The Health Advocates
A podcast that breaks down major health news of the week to help you make sense of it all.
“The Health Advocates” is hosted by Steven Newmark, Director of Policy at GHLF and Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.
“The Health Advocates” is part of the Global Healthy Living Foundation Podcast Network and hosted by Steven Newmark and Zoe Rothblatt.
S5, Ep 1- The COVID-19 Pandemic: A Marathon with the Finish Line in Sight?
In his most optimistic outlook since declaring COVID-19 a public health emergency of international concern in January 2020, the World Health Organization’s Director-General, Tedros Adhanom Ghebreyesus, stated last week that “We are not there yet. But the end is in sight.”
The rollout of vaccines and therapies have undeniably helped curb deaths and hospitalization rates, but with protective measures being eased and over 1 million deaths this year alone, COVID-19 remains a cause for concern while governments explore how best to manage it going forward.
The COVID-19 Pandemic: A Marathon with the Finish Line in Sight?
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
It kind of feels like we are moving on. Mask orders are gone. Also proof of vaccination has completely disappeared. You know, it’s hard to hear that all of these things are ending and I still feel like we’re hearing about new infections. We’re entering the fall and we should expect a surge.
Steven Newmark 00:30
You’re listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:39
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes listen to all of GHLF’s great podcasts. We have so many to choose from!
Zoe Rothblatt 00:57
We sure do! And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Wellness Evolution. We know it’s a really stressful time with, you know, the end of summer, lots of changing guidelines, so definitely take a break and listen to how the hosts are practicing wellness.
Steven Newmark 01:16
Excellent.
Zoe Rothblatt 01:17
So let’s start with a listener comment. Ready, Steven?
Steven Newmark 01:20
I am ready.
Zoe Rothblatt 01:21
This one is from Claud P who wrote “Engaging hosts! Really enjoy this podcast!”
Steven Newmark 01:26
Thanks, Claud, we really enjoy putting on this podcast and we really appreciate your listening.
Zoe Rothblatt 01:31
We sure do enjoy it so much that we are back for season five. We’re so excited to keep the show going and talking to you all.
Steven Newmark 01:39
Yes, yes! Season five! And there is already a lot to talk about.
Zoe Rothblatt 01:43
That’s right, Steven. You know, as the COVID-19 pandemic lingers, many restrictions and protective measures have been relaxed quite a bit. But we know that health care professionals are still at the frontline of this and immunocompromised patients in our community are still at risk. So is it really behind us, what’s going on with the pandemic?
Steven Newmark 02:02
Well, we’ll talk about that in a few minutes. But first, let’s start with some news from the week. First up is the new boosters. The new boosters are here! The FDA has authorized two updated boosters, the bivalent COVID vaccine of Moderna and Pfizer. If you’re at least 12 years old, don’t have an active COVID infection, and it’s been at least two months since you’ve had a booster, you’re eligible for the new booster.
Zoe Rothblatt 02:24
Okay, big round of applause! This is exciting! I know many in our community are excited about it. Because you know, there’s been sort of a drag with getting vaccines and people may not have mounted a full response to the first vaccine and then to have new variants which that vaccine didn’t necessarily cover. This is really exciting because it covers that dominant strain of Omicron.
Steven Newmark 02:44
Yeah, I mean first of all, not only will the booster with the new vaccines decrease the likelihood of infection and severe illness, but it could also decrease the likelihood of developing long COVID.
Zoe Rothblatt 02:54
Yeah, which we know is a concern for our community who already lives with chronic illness, you don’t want to add another chronic condition on top of that. It is a lot to manage!
Steven Newmark 03:03
Right. Many folks in our community have already gotten their boosters, and some have reported getting that and the flu shot at the same time.
Zoe Rothblatt 03:09
Which is awesome. It’s always good to hear from people about their experiences. But as a reminder, you know, always talk to your doctor about getting the shot, and if you need to pause any regular medications to do so.
Steven Newmark 03:20
Now, obviously, having just listened to this, our listeners know all about the new vaccines. But there is some bad news. The boosters are getting very little fanfare. And you know, there’s a fear that too few people might get them. The CDC has said that a national survey found that 72% of respondents said they were likely to receive an updated booster but to actually get them vaccinated requires making the boosters easily accessible and making sure folks know that their benefits. So hopefully we’re continuing to get the word out and I would put forth on to our listeners: don’t just get a vaccine yourself, but make sure to spread the word about the new boosters.
Zoe Rothblatt 03:54
That’s a really good point! And you could also point people to this tool on the CDC website that calculates if you need a booster. You know, you put in your age, if you’re immunocompromised, you know, what vaccines you got in the primary series, if you’ve got a booster, and it lets you know if you are eligible for this vaccine. So that’s a really great tool for people who just simply don’t know the answer.
Steven Newmark 04:15
So more good news. The uninsured rate has approached a record low. Census numbers that were just released, show that 8.3% of Americans or roughly 27 million people did not have any health insurance in 2021. Well, that’s still, I would say unacceptable. It is an improvement from 2020 when 8.6% of Americans were uninsured.
Zoe Rothblatt 04:36
And this is a result of Medicaid, which is the public health insurance option for people with low incomes. And what’s really interesting is that Medicaid rates have increased because of the COVID Relief Bill that Congress passed in March of 2020. So I guess you could say, you know, there’s some good that’s come out of the pandemic because the Family First Coronavirus Response Act basically mandated that Medicaid programs not forcing enrollees to requalify for the program. So it just eliminated a lot of those extra steps like, you know, having to fill out more forms, realizing the plan year is ending, and you have to, you know, get together all your stuff and re-qualify, you just sort of rolled into the next year. So Medicaid enrollment has grown.
Steven Newmark 05:16
Yeah, um, you know, it’s important to advocate, talk to your elected officials about the importance of health insurance and how it helps you to stay healthy.
Zoe Rothblatt 05:23
Totally! And if you want to do so you could always join our 50-State Network. We’re a group of advocates, and we will help raise your voice to legislators and talk about issues that you care about. Okay, Stephen, I want to give a quick update on the methotrexate access issue. We haven’t talked about in a bit and it feels like it’s maybe died down a bit. I’m hearing less from our community about the issue and I guess less from the media too.
Steven Newmark 05:47
Well, let’s just remind our listeners what the methotrexate issue exactly is.
Zoe Rothblatt 05:52
Yeah, good call. So you know, after the overturn of Roe v. Wade, and some states with trigger laws, they called out methotrexate as a restricted drug, because it has this other use that it can be used for an abortion, but we know that many in our community take methotrexate for things like rheumatoid arthritis, to help control their arthritis, and avoid irreversible joint damage. Actually, methotrexate has been around for decades, it’s like one of the oldest drugs used. So you know, obviously, when they call this as a restricted drug, people started having access issues. And I wanted to share that I actually take methotrexate and I moved to Tennessee. I was a little bit worried based on the laws here, and I was able to successfully order it. So I want to tell our listeners, you know, my specialty pharmacy worked for me. And when I talked to others in our community about this, I learned that you know, it might be a problem at the local pharmacy, but this specialty pharmacy is a really good resource. So definitely, you know, talk to your doctor about what the best pharmacy is to work with when you’re ordering your medications.
Steven Newmark 06:51
Well, that’s great news! I’m glad to hear that the stories from our community seem to be dwindling in regard to this topic. That’s a good thing.
Zoe Rothblatt 06:58
Yes, me too, because no one should ever have to take extra steps to get their medication even if they are able to get it. If it takes more prior authorizations and verifications. It’s still delaying people, which just isn’t fair and leaves people in pain.
Steven Newmark 07:12
Absolutely.
Zoe Rothblatt 07:14
Okay, let’s go back to my original question, you know, are we still in a pandemic?
Steven Newmark 07:19
Ahhh- That’s a long winded way of saying: I’m not sure. I will say that precautions like masking and distancing are clearly not being enforced. But that said, healthcare professionals are still on the frontlines of the pandemic. And, you know, high risk patients are as well and folks are wondering if the country as a whole, the world as a whole, is moving on too quickly. Yeah, it kind of feels like we are moving on. Capacity limits are gone. When you go into places, I’m seeing that restaurants, sporting events, everything’s at full capacity. Yeah.
Zoe Rothblatt 07:55
Mask orders are gone. I just took a flight, I was one of two people in a mask. And also proof of vaccination has completely disappeared. There was a while where we had to show our vaccine card to get in restaurants. And you know, that’s gone, too.
Steven Newmark 08:10
Yeah, yeah, it’s true. We never have to show vaccinations anymore.
Zoe Rothblatt 08:13
And on top of that, you know, the CDC recently loosened their guidance on social distancing and quarantine. And, you know, the free government at home COVID-19 rapid test program ended earlier this month, which, you know, it’s hard to hear that all of these things are ending and I still feel like we’re hearing about new infections, BA.4 and 5 are swarming, we’re entering the fall here, and based on previous years, it feels like we should expect a surge.
Steven Newmark 08:42
Yeah. So let me ask you a question. What would be one positive that you would take from the last two and a half years? And also ask a second follow-up question on top of it. What is one thing you’re currently, September 2022, that you’re dispirited about, at this phase of the pandemic?
Zoe Rothblatt 09:00
One positive, I think people are more aware of, you know, staying home when you’re sick. I think before like a lot of people I remember used to show up to class with a runny nose and I would feel so upset because I’m like: “what are you doing here? You’re gonna get others sick” and now I think people know, you know, if you don’t feel well take a step back and stay home. It doesn’t have to be COVID. Like any illness, like really, you shouldn’t be spreading it because you don’t know who around you is high risk.
Steven Newmark 09:27
That’s a good one!
Zoe Rothblatt 09:28
And to answer your other question. What am I sort of feeling like dragged and upset about? I’m feeling upset that it feels like most people around me are talking about COVID as if it’s completely in the past, and I don’t know how you get people to realize it’s still going on. And I’m fatigued too. I’ll admit, I’ve become more relaxed with the mask, especially when no one around me is wearing one, it’s hard to keep it up. It’s exhausting. And you want to be social and protect your mental health but at the same time, it’s really hard to balance all that. And Steven, I’ll throw the question back to you. I’m curious to hear where you stand with all this.
Steven Newmark 09:28
I like what you said about being sick. Just a quick anecdote story, I was talking to a friend who works at a big fortune 500 company. And you know, the joke there about the sick policy was: there is no sick policy. There’s no such thing as calling in sick. But that has completely changed. So that goes to your point. But just so I don’t take the same answer as you. I think one of the things I do like is that it’s become somewhat acceptable to wear a mask in public. And I like that COVID aside, and like that for the flu season. On the flip side, where I am today, I think what I’m most frustrated is, I hear some variation on the phrase of: “oh, it’s like the flu. It’s like a cold. It’s like the flu. Now. COVID is just like the flu.” And it’s not, because the flu infects and kills a certain amount of people each year. But the amount of people that have died as a result of COVID just dwarfs anything that comes near the flu; it’s not the flu. I think conflating the two is problematic.
Zoe Rothblatt 10:57
And you know, the flu is still very serious. You know, we get our flu shots every year for a reason. We can’t just say: “Oh, it’s just the flu.”
Steven Newmark 11:04
Right? Who wants a second flu out there?
Zoe Rothblatt 11:06
Yeah. And you know, with the flu, we know that it’s seasonal. There’s, I guess a time of year where we could sort of take a break from it. With COVID, we haven’t had that luxury. It’s been nonstop, right? So you know, where do we stand with vaccines, one of our best tools when it comes to COVID? I was looking at some numbers, only 67% of the US population are considered fully vaccinated, and only 32% have received a booster. So when you think about that, like what even is fully vaccinated anymore? If you got your first series in 2021, we’re nearing 2023. Is that still protective? You know, is the number of people protected really at 32%? So we’ll see what happens with this new booster. But you know, there’s still a lot of misinformation out there. And I guess vaccine fatigue is something I’ve been thinking about recently, you know, experts are saying we’re going to need a flu shot and COVID shot every year. And it’s a lot! So I think it will be easier as time goes on, and we get more defined time periods to get the vaccine, like we know, annually get your flu shot. With COVID, it’s been sort of a peek into the news and figure out when you need it. And that’s a little fatiguing. But once we get on a rhythm with it, I think it’ll be, you know, helpful and more understandable.
Steven Newmark 12:02
Right Yeah, that’s a good point. There’s a timing element, you know, we discussed the tool on the CDC’s website. If you contracted COVID, how long has it been? You have to plug in different permutations to figure it out. You know, it’s early September, I have an appointment to get my vaccine. I haven’t gotten it yet. And part of what I’m waiting for, my appointment is in early October, I kind of want to get a little more separation since I contracted the illness. I’m also like, have the mindset, you know, should I wait until there’s a particular moment, a particular event that I’m going to be at, Thanksgiving perhaps.
Zoe Rothblatt 12:56
Right, with the holidays, what will those look like this year?
Steven Newmark 12:59
Right. So do I want to wait to get the vaccine, let’s say two weeks before then so I have peak immunity for something like that? It’s such a tricky thing.
Zoe Rothblatt 13:06
It’s so tricky. And something else I want to mention here, that I was reading comments from people in our community, is that many feel unsafe to even go get the booster because in some pharmacies, people aren’t wearing a mask. So it feels risky, you know, to go in and the person administering the vaccine may not be in a mask, and you’re trying to get this protection, but you also could be putting yourself at risk at the same time and I think these little nuances that feel so obvious to our community aren’t coming through in the general public. And that’s where we feel left behind.
Steven Newmark 13:37
Absolutely. So given all this, I guess it feels like the pandemic is still ongoing in some twisted way. And we will keep you at the ear, of course on The Health Advocates.
Zoe Rothblatt 13:46
Yeah, I would say so. I’m going yeah, we pointed to a lot of things. You pointed to the impact on health care, immunocompromised, long COVID, the vaccine conversation. Different restrictions are still being talked about whether they’re removed or here they’re being talked about. Given all that, to me, it feels like the pandemic is going on. And then you’re like, am I in a different world than everyone else? But you add up all these points. And yeah, it’s still going on.
Steven Newmark 13:46
Yeah you know who said this really well is the Executive Director of the World Health Organization.
Dr Tedros Adhanom Ghebreyesus 13:51
“We have never been in a better position to end the pandemic. We’re not there yet. But the end is in sight. A marathon runner does not stop when the finish line comes into view. She runs harder with all the energy she has left. So must we! We can see the finish line. We are in a winning position. But now is the worst time to stop running. Now is the time to run harder and make sure we cross the line and reap the rewards of all our hard work.
Zoe Rothblatt 14:51
Okay Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 14:55
Well, I learned from you about the CDC’s tool. I actually had.. I was not familiar with that, but I’m excited to start plugging it in. And maybe then I will actually figure out when to get my booster.
Zoe Rothblatt 15:05
And I learned from you about how the uninsured rates decrease as a result of Medicaid expansion during COVID.
Steven Newmark 15:13
Well, we hope that you learned something too. We’d love to hear from you. Email [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 15:21
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 15:27
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:32
Well, everyone thanks for listening to The Health Advocates a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts. And definitely hit that subscribe button wherever you listen and share this podcast with your family and friends. It’ll help more people like you, find us. I’m Zoe Rothblatt.
Steven Newmark 15:53
I’m Steven Newmark. We’ll see you next time.
Narrator 15:58
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
S4, Ep 13- Project Wheelchair Runway
Disability representation in the fashion industry has a long history with rheumatoid arthritis designer Michael Kuluva who has championed this issue for years. Kuluva designs accessible clothing, raises awareness for chronic illness through fashion and features advocates like Kelly Boyd as models in his Tumbler and Tipsy show. Now, we meet Kellie Cusack who lives with spinal muscular atrophy, and will be featured in a fashion show, as she “rolls down the runway” at New York Fashion Week on September 8th”
“Fashion really does play a role in your health,” says Zoe Rothblatt, Associate Director, Community Outreach at Global Healthy Living Foundation. “The physical and mental health is so tied together; you want to feel good in what you’re wearing when you’re already feeling so bad about living in pain. It really does make a difference to look good and feel good, as they say.”
S4, Ep 13- Project Wheelchair Runway
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
Fashion really does play a role in your health. The physical and mental health is so tied together, you want to feel good in what you’re wearing when you’re already feeling so bad about living in pain. It really does make a difference to look good and feel good as they say.
Steven Newmark 00:26
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:36
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:41
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from.
Zoe Rothblatt 00:55
We sure do. And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Healthcare Matters, hosted by our colleagues, Robert Popovian and Conner Mertens. They do a deeper dive on policy issues and season three is coming soon. So definitely get caught up on season two.
Steven Newmark 01:15
I call Robert and Conner the smart guys because they seem to know it all when it comes to health policy matters. So definitely check it out.
Zoe Rothblatt 01:22
Let’s start with the listener comment. Are you ready?
Steven Newmark 01:24
Let’s do that.
Zoe Rothblatt 01:25
Okay, this one is from Nick P who wrote, “Great podcast with timely topics.” Steven, this week we have a special guest interview and I’m really excited for you to hear it. I spoke with LGBTQ advocate Kellie Cusack, who on September 8th, she’ll roll in a first of its kind runway show preceding New York Fashion Week.
Steven Newmark 01:45
What do you mean? What do you mean roll?
Zoe Rothblatt 01:47
So Kellie lives with spinal muscular atrophy and uses a wheelchair so she will be taking part of the show called Double Take, which is a fashion show aimed at increasing disability visibility and break down stereotypes around fashion. So to really showcase adaptive fashion, Kellie and other people living with disabilities will be participating in the show.
Steven Newmark 02:09
Oh, sounds exciting.
Zoe Rothblatt 02:10
Yeah, it’s really exciting. And she came on to speak to me about her condition and for her hopes about what people will learn from this fashion show.
Steven Newmark 02:19
Excellent. Well, I can’t wait to listen.
Zoe Rothblatt 02:20
As we always do, we have a few news updates before we hear the interview.
Steven Newmark 02:24
Well, we had another LGBTQ advocate Kellie Cusack, who on September 8th, she’ll roll in a first of its kind runway show preceding New York Fashion Week. we asked our community what our folks think about the new CDC guidelines and what their plans are now.
Zoe Rothblatt 02:34
Surprisingly, 95% of the people that answered, and as a reminder these are people living with chronic illness, so they had not heard about the latest CDC COVID guidance before our poll came out.
Steven Newmark 02:46
70% said they feel unsafe due to the less restrictive guidance and 27% said they feel the same.
Zoe Rothblatt 02:55
About half of respondents from the poll said they’ll continue going out in public the same amount. And the other half said they’ll go out less often. In the free response section, it became clear that people who are going out the same amount are still following the traditional COVID safety precautions like masking, social distancing, and hand washing.
Steven Newmark 03:12
I definitely get the sense that the number of mask wearers is really dipping, almost falling off a cliff. Anecdotal, this is not a poll, but New York City public transit where it’s technically still required, my gut is it’s down to about 15%. Whereas at the beginning of the summer, I felt it was well north of 50%.
Zoe Rothblatt 03:33
Here in Nashville, Tennessee, it seems like I’m one of the only ones wearing a mask. By the way, in the free response section of the poll, many, many people highlighted how a mask would just make them feel so much more safe.
Steven Newmark 03:45
I continue to wear my mask, and I have to be completely honest about it. I do feel like a big reason I wear the mask is less for personal protection at this point and more to make it as socially acceptable as possible to continue wearing masks.
Zoe Rothblatt 03:58
I don’t think you need a reason. It feels good. When I see somebody else with a mask, it’s almost like we have a little wink at each other like, “Oh, yeah, you too. Awesome.”
Steven Newmark 04:07
That’s true. And as I said many times, it’s not just COVID. I don’t want to get the flu, I don’t want to get heck, I don’t even want to get a cold if I can avoid it.
Zoe Rothblatt 04:14
Especially when you have chronic illness, like any little ailment, it’s not exaggerating, when you say it really does have an impact. I live with arthritis and Crohn’s and if I even have a little cold, I feel it in my gut, I feel it in my joints. It’s an all over really bad feeling. And then sometimes you have to pause your medication so then your chronic illness acts up, it takes you for a loop. Our next piece of news, there was a new study published and it was about support and needs in the workplace for chronic illness. So let’s go through some of the results and then talk about what people can do. The study was published in Arthritis Care and Research. It actually focused on Canadian rheumatic disease patients between the ages of 18 and 35. So what they wanted to do was learn more about how telling a supervisor about a rheumatic disease might impact the level of workplace support. Interesting question.
Steven Newmark 05:07
So what did they find?
Zoe Rothblatt 05:08
So they found that 70% of young adults told their immediate supervisor about their condition, which I was surprised. Working in a health care organization, I feel more comfortable to talk about my chronic illness, on the podcast with you and at work in general, but interesting when we work at a place where people understand and we’re working with patients all the time, so there’s like a natural way to bring it up. I was surprised for the people who don’t, it must be really challenging to do so.
Steven Newmark 05:36
I think similarly to the 70% of young adults, I was more inclined to tell my immediate supervisor but not go beyond that.
Zoe Rothblatt 05:44
Right.
Steven Newmark 05:44
First of all, I had to go get infusions. And that requires a lot of time away from the office. So I felt I had to say something. It would have been awkward for me to not say something.
Zoe Rothblatt 05:55
Yeah, here’s what else the survey found. They measured presenteeism, which is the concept of showing up for work but not being productive. I think we’ve all found ourselves there, chronic illness or not. And they found that presenteeism was high, especially when workplace supports needs were not met. And the opposite was true to so that when the supervisor and organization met the needs of the employee, presenteeism was lower.
Steven Newmark 06:23
It’s a different feeling when you feel as if you and your work product is valued versus your body being present in a certain place is is the value.
Zoe Rothblatt 06:31
So here are some of the most wished for workplace supports. Number one, a flexible work schedule.
Steven Newmark 06:38
Yeah.
Zoe Rothblatt 06:38
Two, prescription drug coverage. Three, extended health benefits. Four, paid sick leave. Five, modified job duties. And six, an ergonomic and accessible workstation. As advocates, what can you do if you find yourself in a situation where you know you’re at work and you need some of these things and don’t know what to do?
Steven Newmark 06:57
I think it’s important to remind everyone to advocate for yourself in the workplace. If you don’t feel comfortable talking to your supervisor, talk to someone perhaps in your human resources department and ask for the company’s disability plan and insurance policy. And of course, know your rights. There is the Family Medical Leave Act, FMLA. That allows you to take up to 12 weeks a year for medical emergencies, and the Americans with Disabilities Act, which requires employers to make reasonable accommodations for disabled workers.
Zoe Rothblatt 07:24
All great reminders. Thank you for that. I think it’s important to remember that advocacy can mean talking to your legislators, but it can just mean you know, sticking up for yourself in everyday life and getting your basic needs met.
Steven Newmark 07:35
When you’re standing up for yourself, you’re also standing up for others. Because the more you normalize, what it is to have a chronic condition and the more you show that as a member of the chronically ill community, you’re still a productive member of the workforce. The more folks that see that, the more you’re actually helping others.
Zoe Rothblatt 07:53
Amen, well said.
Steven Newmark 07:55
In other news, Texas has confirmed the first US death of an individual who had monkeypox. It’s not yet known whether the individual died from monkeypox, but what we do know is that the patient was severely immunocompromised.
Zoe Rothblatt 08:09
When I saw this headline, I got nervous because, you know, we know our community is at high risk for a variety of illnesses. And this was the first death publicly reported by health authorities during this current monkeypox outbreak. So I think what you said is true, it’s too soon to know if it was monkeypox. We’re waiting for autopsy results. And instead of being scared, we have to figure out you know, what can we do in the meantime? What can we do to stay safe? And I think it goes back to what we always talk about, you know, make a plan.
Steven Newmark 08:39
Always talk to your doctor. Don’t be scared, but there are scary things out there.
Zoe Rothblatt 08:39
Yeah.
Steven Newmark 08:39
But talk to your doctor to help navigate the world.
Zoe Rothblatt 08:41
Sometimes headlines are put in a way to make it sound scary. So take it with a grain of salt and know that you have a community here with us and we’ll continue putting out information on monkeypox and what you need to know. Well, Steven, and our listeners, have you ever wondered what it’s like to be in a fashion show that’s focused on people with disabilities? Well the good news is that disability representation in the fashion industry has a long history with rheumatoid arthritis designer Michael Kuluva. He’s championed this issue for years, actually. Kuluva designs accessible clothing, raises awareness for chronic illness through fashion, and features patient advocates, like Kelly Boyd, as models in his New York Fashion Week Tumbler and Tipsy shows. Now we meet Kellie Cusack, who lives with spinal muscular atrophy and will be featured in a fashion show as she rolls down the runway at New York Fashion Week on September 8th. Let’s press play on this interview and learn more from Kellie about how she advocates for the disability community and increases awareness of adaptive fashion. Welcome, Kellie.
Kellie Cusack 09:41
Hi, thank you for having me.
Zoe Rothblatt 09:43
Of course. Tell us a little bit about your story and what it’s like living with SMA.
Kellie Cusack 09:48
Yeah, sure. So I’m Kellie, I’m 23 and I have SMA type 2. For me, that means you can see I have a wheelchair, and I love being in my wheelchair you know. Living with SMA definitely isn’t easy but I’m so grateful for my community and people and friendships and make it worthwhile.
Zoe Rothblatt 10:09
So tell us about the community, how did you become an advocate and start sharing your story and connecting with the community?
10:17
I started doing fundraisers with my mom and a bunch of my middle school friends when I was around 10 years old. And ever since then, I’ve just been really involved. I can’t remember exactly what year but my mom and I became co chairs for the New Jersey chapter of Cure SMA. And we’ve been doing so many amazing things since then. And the conference has really helped me find my community, find the people just, I don’t know, feel better about my disease when it’s really hard and have hard days.
Zoe Rothblatt 10:49
For sure, having a community is so special. Just that feeling of when you know someone gets it on some level and can connect with you. It definitely inspires me to share my story when I’m talking with people that get it. You mentioned you’ve done some stuff over the years. Is there like an event or a day that that stands out to you?
11:09
Oh, there’s so many that I love so much. I love the bake sales we did, and we did something called the Bowl-A-Thon where we partnered with a local bowling alley. And all the fundraiser money went toward Cure SMA, and it was so much fun. We had pizza, all kinds of different foods and everyone just had a great time.
Zoe Rothblatt 11:29
I think it’s so great to have fun while you’re doing important work. We’re really here today to talk about this upcoming fashion show. Tell me about the show that you’re taking part of, it’s coming up proceeding New York Fashion Week.
11:42
Yeah. So it’s called Double Take. And basically, the whole concept is that it’s all about disability representation and advocacy, and also the SMA community, and just finally representation in that because we turn through life, it’s hard to find things that are fashionable for us. I know for me personally, and a lot of my other friends we shop in kids clothes in kid’s sizes, sizing, and it’s hard to be inclusive and accessible that way. This show tied to us in the community, and I’m so excited.
Zoe Rothblatt 12:15
And how did you get connected with the show?
12:17
James is music video spaces I saw online. And I just loved it so much. I posted about it online, and then someone from his team reached out to me and said, “Hey, we how much you love his project. We’re gonna do something similar. Would you like to be involved?” And I was like, absolutely. Yeah, that sounds like so much fun.
Zoe Rothblatt 12:40
The show aims to increase disability visibility, break down stereotypes, and really focus on adaptive fashion. What does this mean to you? And what kinds of changes would you like to see in fashion?
12:53
For me, personally, I feel like price points for me, I feel I need to change, it’s just not accessible enough, if that makes sense. So for me in the future, I just hope that it will be more affordable and just easier to get access to.
Zoe Rothblatt 13:09
There’s so much that goes into caring for your health. And I think people just think of it as between you and the doctor. But it’s actually so much more than that. And fashion really does play a role in your health and the physical and mental health is so tied together. You want to feel good in what you’re wearing when you’re already feeling so bad about you know, living in pain or whatever it is. It really does make a difference to look good and feel good as they say,
13:35
Yeah, definitely I think in my head a lot, sometimes about like what’s going on in SMA. So an outfit really changes my perspective. And just gets me out of that, makes me feel so much better.
Zoe Rothblatt 13:48
Me too. I’m with you. An outfit can turn around my day. When others see this show, what do you hope that they’ll learn and take away from it?
13:56
I hope people see us for who we are, that we’re human. And just to see the disability community in a different light and just know how powerful that is, that representation and how important it is for sure.
Zoe Rothblatt 14:09
I think that’s such a good point about you know, seeing disability people in a different light. We can participate in society like everybody else and have fun and be beautiful and be showcased in a fashion show. And I think it’s so amazing that something like New York Fashion Week, which is so big, that we’re able to be part of it. So thank you for all that you do.
14:33
Thank you so much! It’s so much fun. When they said Fashion Week and like what okay.
Zoe Rothblatt 14:38
It’s so cool. Do you have your outfit picked out?
14:40
I can’t say much about it. Yeah, I have my outfit picked out. I’m so excited!
Zoe Rothblatt 14:45
What is your advice for other people out there looking to raise their voice and just don’t really know how to get started?
14:52
Honestly, just get involved, locally. Whatever disease you have or disability, whatever you may have, like look online. All these different organizations, just see how you can get involved. I feel like everybody has a different chapter of organizations for advice. And you never know or even just you can ask for people and say, “I have this, you know, what resources do you use?” That’s really helped me to be more out there.
Zoe Rothblatt 15:20
Well, speaking of getting involved in finding your community, how can our listeners find you and stay in touch with you?
15:26
So I haven’t blogged for thewildwarrior.wordpress.com. And my Instagram, which is #kellielynne99.
Zoe Rothblatt 15:40
Awesome. Well, thank you so much, Kellie, for sharing your story with us and our listeners, and we’re excited to see you in the fashion show.
15:47
Thank you for everything, Zoe! I really apprecaite it.
Zoe Rothblatt 15:52
Thank you to Kellie for sharing with us and our listeners, we hope that the fashion show goes really great. If you’re interested in seeing Kellie roll the runway and other disability advocates as well, we put a link to the fashion show in our show notes. So definitely check it out. I encourage you to watch it on September 8th. That brings us to the close of our show. Steven, what did you learn today?
Steven Newmark 16:13
Well, I learned from our discussion, the term presenteeism. I’m guessing it’s a new term because I had not heard it before. And I learned that it’s the idea of when you’re at work and physically present, but not altogether working too hard.
Zoe Rothblatt 16:26
And going off of that, I learned well as a reminder about the importance of knowing your rights in the workplace.
Steven Newmark 16:32
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:45
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:52
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 16:57
Well, everyone thanks for listening to The health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts. And definitely hit that subscribe button wherever you listen so you never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 17:15
I’m Steven Newmark. We’ll see you next time.
Narrator 17:20
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 12- Fauci, the CDC, and Confidence in Public Health
Trust in public health officials is on a steep decline, so it’s no coincidence the Centers for Disease Control and Prevention is ordering an overhaul of its operations. It comes at a time when Dr. Anthony Fauci, Chief Medical Advisor to seven Presidents, has decided to step down at the end of the year.
“When the pandemic hit, I think we all had to immediately become public health experts and a lot got lost there,” says Zoe Rothblatt, Associate Director, Community Outreach at Global Healthy Living Foundation. “So maybe now’s the time to step back and learn a little bit about how it works.”
S4, Ep 12- Fauci, the CDC, and Confidence in Public Health
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
When the pandemic hit, I think we all had to immediately become public health experts and a lot got lost there. So maybe now’s the time to step back and learn a little bit about how it works.
Steven Newmark 00:21
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:31
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:35
Our goal is to help you understand what’s happening in the healthcare world to make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:48
We sure do, and you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Talking Head Pain hosted by Joe Coe. In one of the latest episodes, Joe chats with Dr. Leroux about starting migraine associations in Canada.
Steven Newmark 01:04
Great.
Zoe Rothblatt 01:05
Let’s start with a listener comment. Are you ready, Steven?
Steven Newmark 01:07
I am ready.
Zoe Rothblatt 01:08
This one is from Sammy S, who wrote, “I look forward to this weekly. So happy I found this podcast.”
Steven Newmark 01:14
Well, thanks, Sammy S. This week in the news, there was a final rule issued on how surprise bill disputes will be settled. Early on in the year we talked about the No Surprises Act, now a federal law, that protects patients from out of network medical bills when they seek care in network facilities.
Zoe Rothblatt 01:32
What this means basically is that now the surprise billing arbitration rules have been finalized. And this is just about how billing disputes are settled. Because you know, there still is a bill and although the patients are responsible, it has to be handled in some way. So you know, if you’re seeing this as someone that lives with chronic illness, don’t worry, your protections still remain the same under the act.
Steven Newmark 01:54
This rule is just about how the bill gets paid and which factors are considered for claim disputes. The final rule says that arbitrators charged with settling disagreements between out of network providers and insurance companies must first take into account the medium in network payment rate for service but also consider other factors including providers training and experience, the market share of a medical facility or insurance plan in that geographic area, how many services the provider offers and whether it is a teaching facility, for example.
Zoe Rothblatt 02:23
That is a lot of things to consider, and I’m glad it happens on the back end and patients can get the care that they need.
Steven Newmark 02:31
In bigger news, or more interesting news for our listeners, Pfizer has announced that they’ve asked the FDA to authorize an updated version of their COVID vaccine.
Zoe Rothblatt 02:40
So this is the one that’s specifically designed to target the Omicron subvariants that are now dominant in the US while also containing the original Coronavirus strain, right?
Steven Newmark 02:51
Correct. They’ve submitted their preclinical data on vaccine efficacy to the FDA. And this is a new booster that will target both the original Coronavirus strain, as well as the BA.4 and BA.5 Omicron subvariants.
Zoe Rothblatt 03:04
I think that if the vaccines authorized by the FDA-
Steven Newmark 03:08
Oh, is Macintosh vaccinated? He wants his vaccine I know.
Macintosh 03:08
Bark!
Zoe Rothblatt 03:11
Yes, he is almost due for his yearly boosters.
Steven Newmark 03:15
There you go.
Zoe Rothblatt 03:16
He’s ready. If this vaccine is authorized by the FDA distribution could start immediately which would time really well with potential Fall and Winter surges as we’ve seen with a pattern over the last couple of years that cases continue to rise. And this could get ahead of a new variant if it’s approved so quickly. One important thing to note about this news update is that the data that they submitted is a little bit different than what was used in earlier vaccine’s authorizations. So instead of waiting for the test results from human trials, the FDA just asked the drug companies to initially submit the results of tests on mice. And they’ll look at those results while the human trials are starting this month. Basically, they’re relying on those results, along with the human neutralizing antibody data from the earlier BA.1 bivalent booster studies because they had done vaccine studies on the earlier variants and they said we’ll make it more updated for BA.4 and 5. So there are still studies to look at. Our last piece of news is that Dr. Fauci announced he’ll be stepping down later this year.
Lester Holt 04:21
After 38 years as director of the National Institute of Allergy and Infectious Diseases, Fauci says he’s leaving that position as well as his role as President Biden’s top medical adviser in December.
Steven Newmark 04:34
To lead any institution for that long is really just incredible. That’s a testament in and of itself. He has advised seven US presidents starting with Ronald Reagan through the HIV AIDS epidemic, West Nile virus, the 2001 anthrax attacks, various bird influenza threats, Ebola, Zika, and of course COVID. And now monkeypox.
Zoe Rothblatt 04:54
By the way, when he made this announcement, he said, you know, I’m gonna focus on the next stage of my career. It is isn’t like okay, I’m gonna go sit on a beach somewhere. He’s ready and excited to do more.
Steven Newmark 05:05
Boy, at 81 years old, I hope that I’m having a next phase of my career.
Zoe Rothblatt 05:09
And me too. And of course, you know, many of us have become familiar with Dr. Fauci in COVID, he stepped into the spotlight, so to speak, and 2020 as you know, the face of the pandemic response.
Steven Newmark 05:21
Think back to how stressed we were in that time. And I know there’s still a lot of stress, especially for our community. But back then, when we were really hunkered down at home, and you sort of want something to be mad at, and you can’t totally be mad at a virus. And then there was this figure Dr. Fauci who stepped in, I think a lot of people directed anger towards him, which isn’t fair because public health isn’t political. It’s about protecting the health of the community. We’re making the decisions for the health of the community, and sometimes those decisions can counteract your personal opinion. It’s interesting, some of the news reports, referred to Dr. Fauci almost as controversial, which is, so if I may say, just unfair. The job of being the face of public health when dealing with a pandemic is so difficult trying to thread that needle between placing fear, the appropriate amount of fear, in the public’s view so that they take action, but not overwhelmingly fill them with fear. And you’re never going to make everyone happy. In some instances, you’re going to really make people upset. And in the age of social media, it’s easy to get people riled up. It’s unfortunate that there was so much negative blowback to someone who has worked so hard in his career for public health. On a very related note, there is a major change happening in public health leadership in the United States. CDC Director Rochelle Walensky has ordered an agency overhaul of its structure and operations.
Rochelle Walensky 06:51
We learned some hard lessons over the last three years. And as part of that, it’s my responsibility, the agency’s responsibility, to learn from those lessons and do better.
Zoe Rothblatt 07:00
Similar to what we were just saying, we know there’s been a lot of criticism of the CDC of how it’s handled COVID and now monkeypox. And this overhaul is an attempt to modernize the agency and rehabilitate that reputation.
Steven Newmark 07:14
Yeah, the goal is to improve how the agency shares information, develops public health guidance then communicate with the public.
Zoe Rothblatt 07:21
Let’s dive into some of that criticism. What happened? We talked about this in an episode a while ago that, you know, since COVID, public health officials have come under attack. You know, many have accused the CDC of federal overreach and on the other side of it, you know, many in our community have have said, you know, the CDC are just not doing enough to protect us.
Steven Newmark 07:40
The CDC’s authority has been challenged in multiple court cases, such as with the CDC directive that people wear masks on public transportation.
Zoe Rothblatt 07:47
They’re trying to clean up messaging. The guidance has been changing quickly and confusing. And I know that the COVID landscape changes quickly. So you know, of course, the guidance has to follow that. But that community level chart, there was some feedback that that was really confusing for people. And it sort of got people fatigued from all the change that people are lacking trust.
Steven Newmark 08:10
It is fatiguing. Interestingly, in March 2020, according to a survey by the Pew Research Center, 79% of Americans said public health officials, including those at the CDC, were doing a good job responding to the pandemic. By May of 2022, only 52% of Americans felt similarly.
Zoe Rothblatt 08:28
Wow, that is a pretty big jump in two years.
Steven Newmark 08:32
Yes, it is.
Zoe Rothblatt 08:33
Reviews were done to spark this change. I saw that there was two reviews in recent months, one by the Health Resources and Services Administration officials. And they looked into the pandemic response and another was the CDC Chief of Staff into the agency operations. And what their view said essentially was that you know, traditional scientific and communication processes were just not adequate to effectively respond to a crisis with the size and scope of the COVID pandemic.
Steven Newmark 09:04
Macrae’s review outlines a series of recommendations for improvement, number one, releasing scientific findings and data more quickly to improve transparency. Number two, translating science into practical and easy to understand policy. Number three, improving communication with the public. Number four, working better with agencies and public health partners and number five, training and incentivizing the agency workforce to better respond to public health emergencies.
Zoe Rothblatt 09:29
That all sounds great and think about it through the lens of our community. People want information. We want to know you know, how does this disease impact us specifically as someone living with a chronic disease who may be immunocompromised because of our condition or medication? So, you know, the CDC is going to be more transparent and improve communication with the public, I hope that our community is recognized in that because I know we’ve been feeling a bit left behind in the guidance, but this sounds promising.
Steven Newmark 09:58
It does. But this all begs the question, what is and what should be the role of the CDC?
Zoe Rothblatt 10:04
It’s a good question. I saw that Director Walensky said, “I actually really think many people thought this is CDC’s responsibility to fix public health in the pandemic. But the CDC alone can’t fix this. Businesses have to help, the government has to help, school systems have to help. This is too big for the CDC alone.”
Steven Newmark 10:23
Their name is the Centers for Disease Control and Prevention. That’s who they are. They’re a US federal agency mandating with protecting America’s public health, which is vague to say the least. I’m just reading from their website. This is their mission statement on their website, “The CDC works 24 hours a day, seven days a week to protect America from health, safety and security threats, both foreign and in the United States. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, the CDC fights disease and supports communities and citizens to do the same.” That’s somewhat vague, you know, protect us from public health, great. Similar to saying, well, the role of the police department is to protect us from crime, or the role of your local fire department is to protect us from fires. I guess the question is in execution, are they an agency prepared to deal with a pandemic, you know, such as we dealt with the last few years? Are they prepared to deal with the political actors that necessarily have to carry out some public policy pronouncements, public health policy pronouncements. And as a friend of mine said to me, are they just not prepared to be a wartime consigliere, to quote from The Godfather. They’re fine, perhaps dealing with more low key public health, under the radar items such as trying to keep the health of Americans in check so to speak. When things get hairy, are they really the agency to go to?
Zoe Rothblatt 11:50
And I think that goes back to the directors quote I read a few minutes ago that really says we can only do so much, but we need the help of these other institutions. And aside from that, that is made up of individuals, and we need the help of individuals doing their part in order to make these efforts successful, but the CDC itself can’t be responsible alone.
Steven Newmark 12:12
Right, which sort of begs the question, again, in the real world, the agencies are headed by folks that have political bent, if you will. You don’t get to run an agency and certain agencies, particularly a cabinet level positions, like health and human services, without some understanding of the politics involved of what you’re doing. You have to deal of course, with the President, you have to deal with local state health officials who have to answer in turn to governors and mayors who are elected officials. So there’s an element of politics and dealing with the public that is very tricky and difficult to navigate. Just as a simple note, CDC is located in Atlanta. They’re not even headquartered in Washington. I mean that alone, I find fascinating that the emergency responsiveness is not headed in Washington, which is where the leaders are.
Zoe Rothblatt 12:57
And speaking of the leaders, you know, in this discussion, I’m thinking of the FDA and the NIH, the Food and Drug Administration, the National Institutes of Health, and how does that fit into the CDCs role? And what are each of them responsible for? So you know, the FDA supervises drugs, medical devices, clinical trials, and enforces the Federal Food and Drug and Cosmetic Act. So when you think about COVID, the FDA has been the one that’s responsible for authorizing the vaccines, the at home test, stuff like that, while the CDC may give a recommendation, the FDA is sort of the final say.
Steven Newmark 13:34
Yeah, I think that’s fair to say, well, the FDA by law is the only agency that can officially approve a drug.
Zoe Rothblatt 13:41
Yes. And then the NIH is focused more on medical research, and they’re responsible for those important discoveries.
Steven Newmark 13:49
Right. So bringing it all together, layered on top of that is the CDC and the CDC, they’re more of your public health folks. They advise local health departments about diseases, they advise the federal government and in particular, other federal agencies, the president, the executive branch about disease outbreaks that might be going on. They deal with chronic illness, how to address various disease states going on in the United States, but it’s essentially for others to promulgate policy and most importantly, enact and enforce that policy. You know, so it does beg the question, is there a particular person that should be layered on top, a sort of health czar, if not in title, in certainly in deed, it felt as though at times Dr. Fauci had played that role. At times, it feels like the Secretary for Health and Human Services plays that role in non-pandemic public health environments. But there is no one person that the President taps at a particular time to say, “Hey, you’re our health czar. You’re going to get us out of this.” And not that there should be because then like Dr. Fauci was, you have all eyes focused on you, which may not be a good thing either.
Zoe Rothblatt 14:55
I think maybe this overhaul will be helpful for us understand the role of people in the CDC and how the agency works. I think there’s going to be some new teams overseeing this overhaul. And they said they’re going to increase communication. So hopefully, the pieces will start to come together a little bit more. When the pandemic hit, I think we all had to immediately become public health experts and a lot got lost there. So maybe now’s the time to step back and learn a little bit about how it works.
Steven Newmark 15:27
Absolutely. And unfortunately, Zoe, I don’t think we’re going to get the answer in our 12 minute little podcast here. But my best advice would be something akin to when necessary, it should be incumbent upon a president to appoint someone almost temporarily to be that czar. President Obama did this with Ebola, he appointed Ron Klain, who is now serving as President Biden’s Chief of Staff. So Ron Klain is not a public health expert, but he’s somebody that understands government, he is someone that understands politics and policy. And he is smart enough to get up to speed when it comes to public health issues, and can act as the liaison and also understand when the CDC or some of the public health folks are not speaking publicly and making sense to the general public. He’s someone that can help interpret that for the general public and certainly to the president to help propagate stronger policies. So that would be my suggestion is, I don’t think there needs to be necessarily an ongoing health czar at all times, I think that would be unfortunate. But when needed, you can sort of have that role, somebody that steps up almost to a cabinet level type position within the White House.
Zoe Rothblatt 16:33
I think many in our community would appreciate that, because you know, they’re looking for someone that’s going to help guide and if there is that person, it could be really comforting in a stressful time.
Steven Newmark 16:43
Absolutely. And I would also caution and get back to the idea of clarifying the role of the CDC, which is investigating, figuring out what’s going on from their perch way down in Atlanta, figuring out what’s going on when it comes to diseases, and then promulgating suggestions that go up the food ladder. And by the way, I felt as though we spoke somewhat negatively about the CDC. But before we close, I do want to say I still rely on the CDC, I go to their website, I know that they are still, I think, the gold standard when it comes to information about public health information about what one should do when it comes to various diseases, whether it’s flu, zika, heart disease, diabetes. Their website is more trustworthy than any other source. I’m grateful that the CDC exists and puts the information out that they do.
Zoe Rothblatt 17:33
Yeah, me too. And by the way, not just in the US, but they’re highly respected all over the world. On that note, that brings us to the close of our show. What did you learn today?
Steven Newmark 17:46
I thought it was interesting, we talked about the new Pfizer vaccine coming out instead of waiting for test results from human trials the FDA asked Pfizer to initially submit the results only on mice so they can get this going quicker. And I’m happy to hear that.
Zoe Rothblatt 18:00
Yeah, me too. And I learned from you about, you know, the final ruling on the No Surprises Act.
Steven Newmark 18:07
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 18:18
And who knows, whatever you’re sharing may be included in our listener feedback portion of future episodes.
Steven Newmark 18:26
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 18:30
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts. And definitely hit that subscribe button wherever you listen so you never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 18:48
I’m Steven Newmark. We’ll see you next time.
Narrator 18:54
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 11- Methotrexate: Pharmacists Caught in The Middle
The Supreme Court’s decision, making abortion illegal, is causing confusion amongst pharmacists who prescribe methotrexate, a drug used to treat certain diseases but also to end ectopic pregnancies. In this episode, we hear the pharmacists role in helping patients retain wide access to this drug.
“Any health care professional’s first duty is to the patient, and they should do whatever it takes to assist that patient, either themselves or by referring to someone else who can help,” says Dr. Donald Miller, Professor of Pharmacy Practice at North Dakota State University and former member of the FDA’s Arthritis Advisory Committee.
S4, Ep 11- Methotrexate: Pharmacists Caught in The Middle
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Donald Miller 00:06
Any healthcare professional’s first duty is to the patient and they should do whatever it takes to assist that patient, either themselves or by referring to someone else who can help.
Steven Newmark 00:22
Welcome to The Health Advocates, a podcast that breaks down the major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:32
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:37
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, I want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:50
We sure do. As a reminder, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout out to the podcast called Thriving While Aching. It’s hosted by clinical psychologist Laurie Ferguson and it really just showcases the stories of older adults doing what they love despite aches and pains.
Steven Newmark 01:10
That sounds like my life. So it’s great that Laurie is doing that.
Zoe Rothblatt 01:13
Okay, let’s start with a listener comment. Ready?
Steven Newmark 01:16
I am ready.
Zoe Rothblatt 01:17
This one is from Jack N, who wrote, “I enjoy tuning in weekly to learn from you.” Thank you so much.
Steven Newmark 01:23
Today we have a special guest with us Dr. Donald Miller, Professor of Pharmacy Practice at North Dakota State University and former member of the FDA’s Arthritis Advisory Committee, and he’s here to talk to us about how pharmacists play a role in patient advocacy and share thoughts on the methotrexate access issue that we’ve been discussing.
Zoe Rothblatt 01:42
But first, we do have a few news updates. There was a lot of COVID related stuff this week. Perhaps the biggest one is that the CDC loosened the COVID guidance.
Steven Newmark 01:51
The CDC estimates that 95% of Americans ages 16 and older have acquired some level of immunity either from being vaccinated or infected. And as such they have loosened the recommendations.
Zoe Rothblatt 02:03
Yeah, there’s five big points. The first one is test to stay is no longer recommended in schools. This was used by schools to allow students who were in close contact with a person who had COVID to continue to attend in person as long as they’ve been testing negative and asymptomatic.
Steven Newmark 02:20
It sounds almost like it’s more akin to traditional illness such as a flu or a cold. The new guidelines say stay home for five days, followed by five days of masking on return. You know, the significant change here is that the last set of guidelines suggested that schools required the test. The guidelines continue to suggest the use of a test based strategy if masking is not possible.
Zoe Rothblatt 02:39
And I think in general, this updated guidance shows that, you know, it’s really focused on the individual now as we continue to live with COVID. The second point here is that unvaccinated people no longer have to quarantine if they were exposed to someone with COVID.
Steven Newmark 02:55
I guess I wouldn’t even say selfish, I would be of the mindset that, hey, if somebody in your family has the flu, I would kind of prefer you stay home, frankly, then come to my office. And if you are going to come to my office, I kind of would prefer you wear an N95 mask, while you’re here. I also do understand that that has not been what we have done with other viruses ever. So we’re sort of falling back.
Zoe Rothblatt 03:17
You know, it’s important to note the third point here is isolation is still recommended for people with COVID. So what we’re just talking about is exposure. But if you test positive, you still do need to isolate for at least five days.
Steven Newmark 03:30
Absolutely. And again, comparing it to flu, I would hope the same is true if someone gets the flu.
Zoe Rothblatt 03:34
Yeah, rest lots of fluids. Stay home.
Steven Newmark 03:37
And stay the heck away from me.
Zoe Rothblatt 03:39
Yeah. Stay away from our immunocompromised community, please.
Steven Newmark 03:43
Yes.
Zoe Rothblatt 03:43
Respect us.
Steven Newmark 03:44
Yes. Well, back to testing people with COVID, the CDC now says you need two negative tests within 48 hours, if you have had COVID and are isolating before going back out in public. Two negative tests within 48 hours.
Zoe Rothblatt 03:58
And then the last part of this is the CDC, I guess dropped the six foot standard. They’re making social distancing less of a priority now as we move forward.
Steven Newmark 04:07
Which makes sense. I am a little embarrassed. I didn’t even realize we were still doing this six foot standard. I thought it was reduced at some point to three feet. I thought I remember reading that.
Zoe Rothblatt 04:16
No, I think that was last summer, I remember.
Steven Newmark 04:19
We’ve said it before on our podcast, it’s up to yourself as an individual to stay as protected as you can, which puts the onus on you to wear the proper mask and make sure it fits properly and all of that. What I find tough about this is when I’m out in public in an indoor setting on mass transit, I am wearing an N95 mask at all times. But there’s a part of me that wants to sort of take a breath, like pull the mask down and take a breather here and there as is the norm when you have these masks. And I feel very uncomfortable even taking that breath because very few people are in masks anymore. I would feel more comfortable if everyone was wearing a cloth mask or one of those disposable. I feel like at least there’s some level of protection from the virus from something leaving that individuals nose or mouth by having some kind of covering there. And I could allow myself to take a breath here and there.
Zoe Rothblatt 05:10
I think you just summed up pretty well like how a lot of our community is feeling like just very alone in it and not like it’s the community is in it together, maybe the chronic illness community is in it together. But the community at large is sort of ignoring the needs of people who are high risk. And while I will say that your COVID in 2022 is very different than COVID in 2020, and we know a lot and we have vaccines, we have protection, it still is scary for our community.
Steven Newmark 05:38
I will say one positive thing that I find. I know it depends on where you live in this country. I have found that wearing a mask, I don’t see anyone giving me the side eye, anyone shaming me, anyone looking askance because of the mask.
Zoe Rothblatt 05:54
Yeah, I’ll tell our listeners, I recently moved to Tennessee. And I feel like I’m one in five people that wears a mask here. And while I don’t get mask shamed at all, I definitely do get some side glances like, “Whoa, you’re still wearing that thing?” And it definitely is different than New York City where I think more people are in masks. It’s definitely dropped down. But here especially I’m like one of the only people and it almost feels embarrassing at times, like, “Oh, why am I still doing this? I’m the sick kid.” And I just have to remind myself why I’m doing it and that I’m staying safe and protecting myself and I don’t want to catch COVID just because I want to get groceries. Like it’s very simple to just keep myself safe. Going back to some of the guidance, the CDC recommended two negative tests, I saw that the FDA had actually recently recommended to do three take home tests if you’re exposed to COVID.
Steven Newmark 06:48
Previously, the FDA had advised taking to rapid antigen tests over two or three days to relent infection, but now they’re saying three. They say new studies suggest that just two tests can miss many infections and result in a spread to others. So adding a third test will improve accuracy.
Zoe Rothblatt 07:03
And then our last round of COVID news, the FDA accelerated the release of the next round a COVID boosters.
Steven Newmark 07:10
These are going to be distributed in September, and the new shots are being reformulated to include components of the Omicron strains BA.4 and BA.5.
Zoe Rothblatt 07:18
I’m curious to see how the CDC updates its vaccine guidance. What shot is this considered? And is it considered different than the others? I’m curious to see how it goes because many in our community just got a fifth COVID shot.
Steven Newmark 07:33
It should be noted that this vaccine also includes the original strain, in addition to the Omicron strains. The thing that I’m curious about because there’s so much less testing going on now, public testing at least, I can’t figure out how prevalent BA.4 and BA.5 are.
Zoe Rothblatt 07:48
Totally, because so many people also just do the at home test and then they’ll just stay home with a mild infection and do what they need to do. But it’s not reported. Many people are just not testing at all if it’s so mild.
Steven Newmark 08:06
For now we turn to our special guest here with us today, Dr. Donald Miller. He’s a Professor of Pharmacy Practice at North Dakota State University and former member of the FDA Arthritis Committee.
Zoe Rothblatt 08:17
Welcome Dr. Miller. Thank you for joining The Health Advocates.
Dr. Donald Miller 08:20
Hi, thanks for having me.
Steven Newmark 08:21
We’ve been working a lot, Zoe and I and our colleagues at GHLF regarding the methotrexate access issue in the wake of the Dobbs Supreme Court decision. How are pharmacists handling the this access issue? And what have you been hearing generally?
Dr. Donald Miller 08:36
It’s a very important question. First, I think pharmacists were really confused about what to do if they lived in a state that was banning abortion. The problem has really come around methotrexate, because that is listed by some states as a drug that’s used for abortion. It’s a bit of a misnomer because it’s not used for a typical abortion or a medication abortion. It is used sometimes in ectopic pregnancy, An ectopic pregnancy, by definition has not viable, will threaten the life of the mother, and has to be removed so it’s not done by surgery, it’s done by medication. So that is really a drug that should have an exception for abortion. But nonetheless, obviously, many people are afraid of getting accused of being involved in abortion and getting being afraid of going to jail, given the accusation could be fairly devastating. So a lot of pharmacists are very careful and at first were turning down prescriptions for methotrexate altogether. Most methotrexate is for rheumatoid arthritis and other rheumatic diseases. So if a pharmacist knows the patient or knows the prescriber it should not ever be an issue. I can see if a brand new patient or if a different doctor came in with a prescription then the pharmacist would have to ask questions, clarify appropriateness, that’s perfectly okay. But in fact, if it was being pushed to ectopic pregnancy, and then that actually should be okay to again, the legal environment has to get sorted out here. There are two important issues. One is the pharmacist, of course, can turn down a prescription. They can do that, because the prescription is inappropriate, or they can do it because they’re cautious to do that. So you know, so pharmacists don’t want to prescribe morning after pills like Plan B. So that’s fine. If a pharmacist is declining because of their own cautions, then they need to make arrangements for another pharmacist to fill that prescription either in their pharmacy or a different pharmacy. But at the same time, they have an obligation to the patient. So again, if they want to decline, and yes the prescription is appropriate, they have an obligation to help the patient.
Zoe Rothblatt 10:45
In a scenario like this where a patient is having trouble accessing their medication, whether it be this methotrexate issue or all the time there’s different barriers that are you know, stopping patients from accessing their treatment, whether it’s insurance barriers, shortages, what types of actions can pharmacists take to help patients in scenarios like those?
Dr. Donald Miller 11:03
You mentioned insurance access, that’s a huge issue and time consuming for pharmacists. Both physicians and pharmacists will spend a lot of time trying to navigate insurance. There are many issues with something not being covered, or insurance companies may require a patient to fail other medications before they can get a more expensive drug. It’s inconvenient for the pharmacist but any health care professional’s first duty is to the patient, and they should do whatever it takes to assist that patient either themselves, or by referring to someone else who can help in a better way.
Steven Newmark 11:39
Can you tell us about any action that pharmacists can take to help patients become better advocates themselves?
Dr. Donald Miller 11:45
When you say advocacy, I think of legislative advocacy, which something also I’ve been involved in. Here is an issue where I think patients and healthcare professionals need to get involved, particularly right now with state legislators, where states are banning abortion or have similar restrictions. It needs to be clarified that there are some safe harbors for prescribing medicines like methotrexate, so that’s going to happen naturally. But I think if pharmacists and health professionals in particular can be very helpful to state legislators to say, here’s some ideas for how you can clarify things give us some legal safe harbor and yet, you know, maintain some restrictions.
Zoe Rothblatt 12:26
Switching gears a little bit. You’re a former member of the FDA Arthritis Advisory Committee, could you tell us about what that committee does, why it’s in place, and you know, what your role has been as part of it?
Dr. Donald Miller 12:38
By law, the FDA has a number of advisory committees in different therapeutic areas, that they’ll convene when they’re considering a new drug application or a change in a new drug application that is not straightforward. The FDA is not monolithic. And then there are many people involved in making a drug approval decision. It’s very clear when you’re on the advisory committee, that sometimes there’s arguments within the FDA whether to approve or not approve, the kind of labeling would go along with that. So when an advisory committee is convened, it’s usually a day long meeting. The drug manufacturer typically will present their case first, they’ll give all the evidence they can saying, “Yes, you should approve this medication.” Then the FDA will kind of give their point of view. And they’ll point out any concerns they have about either safety or efficacy. There’s always a time for any interested party like patients to make comments. And then there’ll be just an open discussion on the issues and that’ll be finalized eventually, with a vote for approval. The FDA usually follows the advisory committee, especially if it’s sort of a slam dunk decision. But sometimes even the advisory committee can be conflicted, you know, if it’s a seven to six vote in favor or against approval, doesn’t necessarily give the FDA clear indication. But even if the vote is pretty clear, I found that the FDA convenes these meetings to get opinions and the FDA staff, of course, are not an act of practice anymore. And so when you have practitioners on that advisory panel that can say, “Well, in my experience, this is what I think might happen, how the drug might be used.” And that really gives the FDA a lot more insight into whether to approve, and also the conditions of approval and the labeling that would go along with that.
Zoe Rothblatt 14:29
You mentioned that patients are invited to speak up during these meetings. What’s it like hearing from a patient? How does it differ than hearing from the other stakeholders and do you think that the patient voice does make a difference?
Dr. Donald Miller 14:41
It’s good to get the patient’s point of view. Unfortunately, what usually happens is the drug manufacturer will kind of invite people to speak and pay their expenses to come to the FDA meeting. Those patients are often people who are in the clinical trials, and had a good response. Personally, I always take those patient comments with a grain of salt, because they’re just a little bit biased. But again, as I say, getting patients unique opinions about what the drug did for them and so on is helpful. So mostly consider the scientific evidence, but the patient’s opinion also is useful.
Steven Newmark 15:18
This is great information for patients to learn about becoming better advocates and different avenues where patients can advocate such as at the FDA. I know it’s something that both Zoe and I have done on behalf of patients through our work here at GHLF. Also, it’s great talking to you to hear about the work that you’re doing on the methotrexate access issue and what you’re hearing from fellow pharmacists. It has been invaluable for us to have this conversation. So thank you for your time.
Zoe Rothblatt 15:43
Thank you so much for joining us and giving an insight into you know, behind the scenes at the FDA and what pharmacists are talking about.
Dr. Donald Miller 15:50
Well, thank you very much.
Zoe Rothblatt 15:51
Okay, Steven, that brings us to the close of our show. What did you learn about today?
Steven Newmark 15:55
I learned from Dr. Miller the importance of pharmacists in patient advocacy and the unique role that pharmacists can play in the healthcare ecosystem.
Zoe Rothblatt 16:04
And I learned from you about the removal of the test to stay strategies in schools as kids go back to school.
Steven Newmark 16:13
Well, we hope that you learn something too. We’d love to hear from you what you’re dealing with as the CDC guidance changes. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:26
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:33
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 16:38
Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen so you never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 16:54
I’m Steven Newmark. We’ll see you next time.
Narrator 17:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 10- Add to the Outbreaks: Polio
Polio is the latest disease to make a comeback. One case in New York and traces of it found in London and Jerusalem have health advocates sounding an alarm of polio’s potential spreading with a renewed look at the vaccine’s effectiveness.
“It’s worrisome that polio can come back. It’s worrisome that there may be folks in this day-and-age of vaccine hesitancy and anti-vaxxing that may refrain from giving their children the polio vaccine. That’s how viruses come back,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S4, Ep 10- Add to the Outbreaks: Polio
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:06
It’s worrisome that polio can come back. It’s worrisome that there may be folks in this day and age of vaccine hesitancy and anti vaxxing that may refrain from giving their children the polio vaccine. That’s how viruses come back. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:34
And I’m Zoe Rothblatt, Associate Director of Community Outreach.
Steven Newmark 00:37
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:51
We sure do and you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Talking Head Pain, a podcast for people living with headache and migraine and their caregivers as well. Definitely listen in as Joe speaks to migraine advocates about their experiences
Steven Newmark 01:09
Love this podcast and I love Joe.
Zoe Rothblatt 01:10
So let’s give another shout out. Are you ready for listener comment?
Steven Newmark 01:14
I am ready.
Zoe Rothblatt 01:15
This one is from Lynn, who wrote, “This podcast is super interesting and just the right length.”
Steven Newmark 01:20
Well, thank you, Lynn.
Zoe Rothblatt 01:21
Perhaps the biggest news of the week is that the Senate passes the bill focused on climate change, tax, and healthcare so that we could dive into what this means for health care.
Steven Newmark 01:32
Originally, this was the Build Back Better legislation that we’ve spoken about in past podcasts. That legislation we thought was dead in the water. However, it seems to have been revitalized and came back in a new form. Is Frankenstein a good example? Who is the one that dies and never comes back? It’s a few of them, right?
Zoe Rothblatt 01:50
Yeah.
Steven Newmark 01:51
Zombie legislation. That’s what it is, zombie legislation. It has reappeared as Inflation Reduction Act of 2022.
Zoe Rothblatt 02:03
Although it’s scaled down, it is how progress is made in Washington. I feel like we talk about this a lot, that progress is slow, and it often involves a lot of compromise. So it’s still good, even though it’s scaled back.
Steven Newmark 02:15
Absolutely.
Zoe Rothblatt 02:16
So the first big thing is negotiating prices. So for the first time, Medicare would be allowed to negotiate with drug makers on the price of prescription drugs. And this is projected to save the federal government billions of dollars. But hopefully this is going to help bring down the cost of health care for patients.
Steven Newmark 02:34
And the savings will go to Medicare, it would apply to 10 drugs initially beginning in 2026, and then expand to include more drugs in the following year. It should be noted that the Congressional Budget Office as well as opponents of this provision have said that this plan would stifle innovation and the development of new drugs.
Zoe Rothblatt 02:51
From my perspective, it’s good to have some change, because we hear from patients all the time on Medicare about how the system isn’t working for them. So I’m excited to see some sort of change coming out of this. Another thing to look forward to in the coming years effective in 2025, there’s going to be a cap on out of pocket costs that seniors pay annually for prescription so that’ll be capped at $2,000. And the bill will also ensure that seniors have free access to vaccines.
Steven Newmark 03:16
There’s also a cap on insulin. When the bill was originally reproposed, there was a $35 cap on insulin for all patients. However, in the final stages of the vote, the $35 cap was removed for patients on private insurance but does remain for Medicare patients. Again, we, and I say we are referring to GHLF, we are very optimistic about this portion of the bill. The $35 cap for insulin is great, we would have liked to have seen it for all patients. But again, now we’ve sort of moved the goalposts and said, “Okay, we got the $35 cap for Medicare patients. Now let’s keep going and get it for private insurance patients.”
Zoe Rothblatt 03:52
And then the last piece of this is the subsidies so the legislation broadens the subsidies available under the Affordable Care Act for another three years.
Steven Newmark 04:01
Which is great, because a few weeks ago, the government announced that they are the lowest percentage of uninsured Americans anytime over the last 50 years. So it’s great to see that more and more Americans are obtaining insurance, which is always the first stopgap measure in healthcare.
Zoe Rothblatt 04:15
And for our community that relies so heavily on insurance to help get access to doctors, this is good news that it will be more affordable.
Steven Newmark 04:25
Some other good news is the Novavax COVID-19 vaccine has had its rollout. It’s off to a slow start, unfortunately, but it is out there. As a reminder, the Novavax COVID vaccine got emergency use authorization last month.
Zoe Rothblatt 04:38
So with this slow rollout, I want to look at the numbers of it. And I saw that there’s more than 26 million American adults who remain unvaccinated. And you know, we’re hoping that this Novavax vaccine could have been appealing to this group because it’s different than the other ones out there, but only 7300 doses have been administered to Americans, which is pretty small.
Steven Newmark 05:01
Some reasons for the slow start include the vaccines weren’t immediately available after the authorization. And so there may have been some reporting delays. The vaccine also has not been widely available. They’re just 385 sites initially that were offering the Novavax vaccine. Hopefully that number is starting to tick up. It’s now offered at almost 1000 sites around the country. So hopefully, we’ll see some progress. You know, as we’ve spoken about before, the window of folks who are unvaccinated but willing to take the Novavax vaccine rather than the mRNA, it was a small slice. So most of those unvaccinated are unvaccinated for other reasons.
Zoe Rothblatt 05:35
I guess the good news buried in all this is that the numbers are going up of its availability. So hopefully we’ll see vaccination rates go up too.
Steven Newmark 05:48
Other news, health officials in New York State have discovered a case of polio in an adult. The first case in the United States since 2013.
Zoe Rothblatt 05:56
This was jarring, you know, we have COVID, we have monkeypox. Now we’re talking about polio. Let’s dive into this. What’s happening and what do we know?
Steven Newmark 06:04
Polio is an infectious disease caused by a virus that can spread from person to person and cause paralysis.
Zoe Rothblatt 06:10
What’s interesting about it is most people who get infected don’t have any visible symptoms, like one out of four people have flu like symptoms, and then a smaller proportion will have this more serious symptoms that affect the brain and spinal cord. And it’s when you don’t catch it because you’re not having symptoms is that then it becomes a problem.
Steven Newmark 06:28
So let’s talk about what’s happening with polio. Earlier this summer, British health authorities announced that they found evidence suggesting local spread of polio in London, and it should be noted that the country was declared polio free in 2003.
Zoe Rothblatt 06:40
In this instance, no one had turned up sick. The proof just came from routine tests of sewage samples. These are routine tests, we’re doing them with COVID now. We test the water and they can just alert health officials that a virus is circulating and allow them to intervene quicker in a more preventative way. What happened in London when they found this is that they reached out to families with young kids to make sure they’re vaccinated as a preventative measure.
Steven Newmark 07:04
Now things are a bit different here in the United States. A young man in Rockland County in New York sought medical treatment for weakness and paralysis in June. By the time the tests confirmed he had polio nearly a month had passed. After this case appeared, New York state health officials started testing wastewater samples from Rockland County and surrounding counties to help determine if the virus is spreading elsewhere.
Zoe Rothblatt 07:25
I was wondering why did it take this man having to come in. But since polio has for the most part been eradicated, it’s like the cost outweighs the benefit of testing the waters because we have such high vaccination rates and the risk of spreading disease is really low. So we’ve been testing for other diseases like COVID, but not necessarily polio.
Steven Newmark 07:46
So wasn’t polio eradicated?
Zoe Rothblatt 07:48
Yeah, in 1988, we had a huge effort to eradicate polio. This was a Global Polio Eradication Initiative. And it really focused on vaccination. We have to get vaccines into people and also surveillance around the world, see where it’s traveling, test the waters, stuff like that. And it was a really, really successful campaign. Polio is more or less been eradicated across the globe. It remains in impoverished countries that struggle with vaccination rates and clean water. So you’ll most commonly you’ll hear about polio in Afghanistan or Pakistan, but for the most part, we’ve really gotten rid of it. So you know, that begs the question, how did it come back?
Steven Newmark 08:26
I guess it just speaks to the idea as much as you can eradicate a disease if you don’t stay vigilant, if you don’t keep up with the vaccinations, and if you’re not so robust in a worldwide vaccination effort, there is always a risk of it returning. And in this particular instance, we don’t know what happened with this individual. We do know that this particular person had traveled extensively, but we don’t know the specifics of this case. So we’re still trying to learn what’s going on here and what’s going on elsewhere. I just want to pause here and say that most adults and I’m talking well, north of 90% of adults do not need to worry about polio. It’s not something to worry about. If you have been vaccinated, you are fine. If by chance you happen to be traveling to a country that potentially might have cases such as Afghanistan or Pakistan, talk to your doctor, although you’re probably going to want to talk to your doctor about other viruses that might be circulating there as well. But in the United States, if you have been vaccinated, there really is no cause to worry, it’s worrisome that polio can come back. It’s worrisome that there may be folks in this day and age of vaccine hesitancy and anti vaxxing that may refrain from giving their children the polio vaccine. That’s how viruses come back. It is like a zombie can’t just sit back and let it die, You have to stay on top of it.
Zoe Rothblatt 09:42
It’s comforting what you said that most people don’t need to worry because most children have been vaccinated by the age of two. I actually checked my vaccine records to double check that I have and I have which felt good so you know, if you’re worried just double check your records. You can also continue handwashing, the mitigation efforts that we’ve already been doing. Keep up with them and practice, you know, social hygiene to keep yourself safe. But there’s really should be very little worry when it comes to polio.
Steven Newmark 10:09
And I have to say, the polio vaccine is one of the great success stories. There were two doctors who developed them separately, Dr. Sabin and more famously, Dr. Jonas Salk. He never got rich off the polio vaccine. He worked diligently, created the vaccine, did a world of wonder for public health, which is really fantastic. And also I should mention, pharmaceutical companies got together and they worked in tandem to produce and distribute these vaccines.
Zoe Rothblatt 10:33
You walk into public health school, and this is one of the first things that they bring up is how successful of a public health campaign this is. Let’s model campaigns after this because it has been such a success. So when we think what’s there to worry about? Not much. One last thought I was thinking about how Polio is so visible, if you do get the impact, or you’re paralyzed from it, as opposed to COVID, which really isn’t visible. And I think there’s such a component there with encouraging people to get the vaccine and protect against this. Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 11:05
You know, I learned about the recurrence of polio and how scary it is that diseases that we thought had been eradicated or nearly eradicated can come back.
Zoe Rothblatt 11:13
And I learned from you at the top of the episode about you know, the new health care bill that’s hopefully going to pass.
Steven Newmark 11:21
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] or better yet, include a short video or audio clip.
Zoe Rothblatt 11:31
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 11:38
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 11:43
Well, everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts. And hit that subscribe button wherever you listen so you never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 12:00
I’m Steven Newmark. We’ll see you next time.
Narrator 12:05
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 9- Health Without Borders: Advocating for Rheumatoid Arthritis in the UK
For people living with rheumatoid arthritis, knowledge is power, whether it’s here in the United States or around the world. In this episode, learn what a leading health advocate in the UK is doing to serve 450,000 adults living with RA and 12,000 children with juvenile rheumatoid arthritis.
“Everything we do is about giving the individual living with inflammatory arthritis as much knowledge and as many tools for them to understand their condition,” says Clare Jacklin, CEO at National Rheumatoid Arthritis Society in the United Kingdom.
S4, Ep 9- Health Without Borders: Advocating for Rheumatoid Arthritis in the UK
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Clare Jacklin 00:09
I think the key thing about being an advocate for yourself is really to have the knowledge and knowledge is power.
Steven Newmark 00:19
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:28
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:32
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:46
We sure do. And you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Getting Clear On Psoriasis. It is Psoriasis Awareness Month, and this podcast can really help you feel less alone as you hear from experts who treat it and patients who live with psoriasis as well. Alright Steven, let’s start with a listener comment as we always do. Are you ready?
Steven Newmark 01:08
I am ready.
Zoe Rothblatt 01:09
This one came from Amy D., who wrote, “Great podcast, keep up the really helpful work. You are my go to source for excellent and current info.”
Steven Newmark 01:18
Well, thank you, Amy. That’s always great to hear. And we’ll keep doing what we’re doing and you guys keep doing what you’re doing.
Zoe Rothblatt 01:24
We have a special guest here with us today, Clare Jacklin, who is the CEO at National Rheumatoid Arthritis Society. And she’s here today to talk to us about her work with advocating for rheumatology patients. We certainly look forward to that conversation. But first we have a few news updates.
Steven Newmark 01:40
The US government is working to increase access to evusheld.
Zoe Rothblatt 01:44
As a reminder, evusheld is the preventative COVID treatment to help protect immunocompromised individuals against COVID. And this is really important because some people in the immunocompromised community haven’t amounted full response to the vaccine. So to be able to have another layer of protection has really helped our community feel more safe.
Steven Newmark 02:03
Evusheld will be available through a subset of federal pharmacy partners as well as individual health care providers who will be able to order smaller amounts.
Zoe Rothblatt 02:11
I also saw that they’re setting up a toll free number for doctors, healthcare providers to get information about the treatment, including how to order it. This is so important because when we did our quick poll, when we asked about evusheld it became clear that many patients were just on a waiting list or waiting to hear information from their doctor. So now for providers have more access to information that will hopefully help patients get that information too.
Steven Newmark 02:37
In other news, President Biden tested positive for a rebound case of COVID-19 after being treated with paxlovid.
Zoe Rothblatt 02:43
Paxlovid is the antiviral treatment. So as opposed to what we were just hanging out, this is something you take once you have COVID. From what I understand, a rebound case is when you test positive after the round of paxlovid. And some cases can be asymptomatic and other times your symptoms actually return.
Steven Newmark 03:01
Experts are looking into why this happens, whether it has to do with the Omicron variant or if there are little pockets of COVID that managed to survive the treatment and then they start replicating again.
Zoe Rothblatt 03:10
I guess the most important part of this as advocates is that there’s new guidance issued by the CDC which is really about isolation periods and masking. So they say if you have a rebound case you should isolate for another five days and after that if your fever and symptoms are gone, you can come out of isolation but you should still wear a mask for 10 days after your symptoms come back.
Steven Newmark 03:34
As we mentioned, this week we have a special guests here with us, Clare Jacklin, who is the CEO at the National Rheumatoid Arthritis Society in the UK. Welcome to The Health Advocates, Clare.
Clare Jacklin 03:44
Delighted to be here. Thanks very much for inviting me.
Zoe Rothblatt 03:47
Welcome, Clare. We’re so excited to have you on.
Steven Newmark 03:49
So Clare, tell us about your organization, the patients you serve and your role as CEO.
Clare Jacklin 03:55
We call it NRAS for short, National Rheumatoid Arthritis Society. We’re the only patient organization in the United Kingdom that focuses specifically on rheumatoid arthritis. And in more recent years, also juvenile idiopathic arthritis. I know in the States, you tend to call it juvenile rheumatoid arthritis. But here we say juvenile idiopathic arthritis. And the organization, NRAS, was founded 21 years ago. So we’re 21 years old this year, we’re having a little bit of a do to celebrate. And the reason the organization was set up was because there was no other organization that really understood the real difference between rheumatoid arthritis and the more general form of arthritis, which of course is osteo. And this is the most common form of inflammatory arthritis, which many of your listeners will know. And it was really important that we had that specific focus. So we serve about 450,000 adults in the United Kingdom with RA and there’s about 12,000 Children living with JIA. I joined the organization over 15 years ago as the Volunteer Manager and have steadily worked my way up to the lofty heights of Chief Exec. And I took over from the founder of the organization back in July 2019, just in time for the pandemic. So wasn’t I the lucky girl.
Steven Newmark 05:21
Good timing.
Zoe Rothblatt 05:22
15 years, that’s really amazing that you’ve been helping patients for so long. I wanted to ask how things have changed for rheumatology patients in your area over the course of these years, like whether it’s access and accessibility to healthcare, your early diagnosis, is there a trend that you’ve noticed in your time?
Clare Jacklin 05:41
Well, certainly things have changed, you know, that is the one thing we can all rely on is change. And of course, when the organization first started, we didn’t have Twitter, and Facebook, and all these things. The way we were communicating with people back then was very, very different. And that was not just through the patient organization’s communication with people, but also the health system. And so over the recent years, there’s been a huge change in how patients interact with their health care professionals. When it comes to how things have changed with the treatment of rheumatoid arthritis, when the charity was first started it was because the catalyst of these new medicines coming to market called the biologics. And of course, over those subsequent years, there have been far more new innovative medicines coming to market. And that, of course, has a massive impact on the quality of life. Talking to many of our medical advisors, they said when they first started in rheumatology, they suddenly became experts in wheelchairs, and makes of wheelchairs. That is no longer the case. Any young consultant or any new registrar in rheumatology, probably are not seeing as many patients in wheelchairs anymore, thank heavens, because of all the innovation in medicines and the treatments, and the understanding of inflammatory arthritis as well. So huge amounts change going on. And we’ve been working very much behind the scenes as well, as well as that face to face interaction with patients. We also do a lot of advocacy and campaigning to ensure that people have the best access to the best treatment at the right place and the right time.
Steven Newmark 07:30
Clare, we first met you at EULAR, which is the European Conference on rheumatology. Can you talk to us about why these meetings matter to you and to NRAS and what it’s like working with other stakeholders and coming together?
Clare Jacklin 07:42
Well, I think it is like in any area of work or industry, learning from your counterparts in different parts of the world, and seeing how things are done, and being able to bring that back to your own country. But also learning a great deal about the science, what’s the advances that are being made. I remember when I first went to my very first EULAR, I was just amazed by the scale of rheumatology, generally. But back then nobody, nobody was daring to talk about potential cures, or getting more and more patients into remission, it was very much about talking about managing the condition. Now, the difference in those intervening years is that we are hopefully looking at, you know, that the science and the research that’s coming through, that is shared at EULAR really is being optimistic about potentially within our lifetimes, we will see cures. We certainly will be able to see far more people with rheumatic diseases having a far better quality of life. And it’s that interaction of sharing of experiences, and the science and the research that is really going to make that happen. And its health without borders really is what it’s all about. And working with the other patient organizations, building really firm friendships between ourselves and my counterpart in Germany and Belgium, in the Netherlands, and Ireland and Canada. And these are really helpful. And while we might not come up with all the answers, it’s still supportive to know that we’re not alone in our own countries dealing with these issues, that they’re similar issues. And of course, we’re stronger together when we can combine our voices on a global scale. That really makes a big difference.
Steven Newmark 09:33
Absolutely.
Zoe Rothblatt 09:34
For sure. I love that you said you know, we’re not alone. we’re in it together, especially as a patient community. It’s so important to lean on each other for support. I wanted to ask you, trickling down from working with stakeholders, how do you bring this information to patients and advocate on behalf of patients with rheumatoid arthritis?
Clare Jacklin 09:53
We’re constantly keeping our website and our information up to date. So what we learn at EULAR and on these global platforms, we bring back and we share through disseminating it through our website, through our online broadcasts a bit like this, we do Facebook Lives. But also in our magazine as well. So that we’re keeping people living with rheumatoid arthritis and JIA up to date with what’s happening. Now, that gives real hope for optimism for the future as well. Because even those people that think, “Well, this may not make a difference to me and my condition, but if somebody in my family develops this in the future, how much better things are going to be?” And I think it really encourages people to think about getting involved in research, by participating in something going on now, so clinical trial, or whatever, will make a difference, as I said, not necessarily to them, but maybe to future generations. And I think generally, most people really want to do that. And that’s how we try to gage our beneficiaries in the work that we do. And of course, then we also by that sharing of experiences that we hear at EULAR, when we’re advocating and campaigning for our UK beneficiaries, we can actually say, “Look, we’re falling well behind France, or Germany or Denmark, if they can do it there, why can’t we do it here in the UK?” People are people regardless of where they live, so why should they be restricted to what they can access, what medicines may be available in this country compared to another country, etc. So it gives us a much stronger voice, when we have that information that we’ve gathered through that coming together.
Steven Newmark 11:39
Can you tell us how you empower patients to be advocates in the UK?
Clare Jacklin 11:43
Well, I think the key thing about being an advocate for yourself is really to have the knowledge and knowledge is power. If we were a stick a rock or a candy with riding through the middle, it would have self management written right through NRAS. Everything we do is about giving the individual living with inflammatory arthritis as much knowledge and as many tools for them to understand their condition, have that better dialogue with their clinicians, and also feel that they can ask for more. They deserve more. They shouldn’t settle for that’s as good as it gets, it can be better, and really to push those boundaries and by them knowing what’s acceptable, and what are their rights within their workplace, perhaps as well as in their health care gives them confidence to say it’s not just about me, this is about everybody living with these conditions. So I will stand up for myself. And I think it’s having that knowledge and understanding of their condition mean able to better self manage does help them to be their own advocates and to be their flag bearers for themselves and for others.
Zoe Rothblatt 12:57
Clare, can you recall a time that that you remember helping a patient be more confident and stand up for themselves?
Clare Jacklin 13:01
When we’ve helped someone and then they phone us back the following week. And they say, “I went back to my GP. And I told them what you told me and now I have an appointment,” and they just feel like I took control. On a population basis, some of the work that we’ve done that has truly made a big difference to individual people’s lives. One example, we were campaigning for about four years alongside the British Society for Rheumatology and another patient organization called Versus Arthritis, for the to be a pediatric rheumatology department unit in Wales. There was a whole country that did not have pediatric rheumatology tertiary center. So young children and their families were having to travel huge amounts of distance to see someone that had that specialist knowledge. So after four years of campaigning to the Welsh Government, we were successful and there was now a pediatric rheumatology team and a growing team based in Cardiff. That has made such a difference not just to the individual child’s life, but to their whole family’s life, because not just the distance but having that specialist care that they can access in a more timely way. And another example of some of the work that we’ve done that has truly moved the needle in care if you like, we worked again with the British Society for Rheumatology to get the threshold for accessing some of these advanced therapies lowered because we had the highest threshold, the highest barrier to cross to get them compared to most of Western Europe. So again, after many years of gathering the data and gathering the evidence, we have now managed to get that lowered, so that people with so called “moderate disease” can actually get onto some of these medications at a much earlier stage of their disease rather than having to wait until things have really got to crisis point and they’re severely affected.
Steven Newmark 15:12
Clare, this is really been illuminating for us here in the United States to hear about the work that you guys do in the UK. And just to learn about the landscape generally. Before we let you go, we do have to ask, what’s the latest with COVID in the UK? Does your community feel safe?
Clare Jacklin 15:27
I wouldn’t say our community feels safe. But we feel safer than we did two years ago. We have had an incredibly successful vaccination program here in the United Kingdom. Anybody that was involved in the global vaccination program should be incredibly proud. It’s the most magnificent advances in medicine at speed. And we will look back on this time and think that was quite a time that we all have lived through. But are we safe? No. There are many people who have autoimmune conditions like RA, that don’t mount a good enough response to the vaccination. So they are still incredibly scared and vulnerable and worried. But I think the majority of people are feeling a lot safer than we did. And I think it’s gotten to the point now where we will need to learn to live with COVID. It’s not going away, won’t disappear. A bit like we learn to live with flu. You know, we have our regular vaccinations every year against flu. I think that’s the direction of travel. And of course, there is still huge advances going on in the fight against COVID. We now have the antivirals. And I know in some countries, we have prophylactic for those who don’t mount a good enough response. We currently don’t have that in the UK, yet. There’s a medication that there’s a campaign to try and get the government to procure. So we hope we will get that. But who knows, because there’s still some concerns about whether that will actually be effective against the current variants of COVID.
Zoe Rothblatt 17:04
Well, overall, it’s great to hear that the community is feeling safer as time goes on. And you know, we hope you and your community and everyone continues to stay safe and healthy. Thank you so much for joining us today.
Steven Newmark 17:18
Yeah, thank you.
Clare Jacklin 17:19
Thank you so much, Zoe. And thank you, Steven. It’s been a real pleasure.
Steven Newmark 17:23
It has. Thank you.
Zoe Rothblatt 17:25
All right, Steven, that brings us to the close of our show. What did you learn about today?
Steven Newmark 17:29
Well, it was more of a reminder this week of how important it is the sense of community that we all have as patients and patient advocates and to really know that we’re not just a national community, but a global community of patients and patient advocates. Really is heartwarming.
Zoe Rothblatt 17:44
100%. I totally agree with that. And I also learned about the advancements in rheumatology and health care that Clare talked about over the past 15 to 20 years and how patients have better access to medications and healthier lives thanks to science.
Steven Newmark 17:59
And makes the advocates like Clare and us. Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip. Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 18:20
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen so you’ll never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 18:37
I’m Steven Newmark. We’ll see you next time.
Narrator 18:43
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 8- How Worried Should You Be of Monkeypox?
As the World Health Organization declares monkeypox a global health emergency, the U.S. is getting more aggressive, directing states to share data, while another 800,000 doses of the monkeypox vaccine will soon be available nationwide. All this for the rare but potentially serious disease that is caused by the monkeypox virus.
“I think monkeypox is just similar to what we’ve been doing with COVID,” says Zoe Rothblatt, Associate Director of Community Outreach at Global Healthy Living Foundation. “Stay up to date on the spread of virus in your area. The CDC has a map now that you could check out.”
S4, Ep 8- How Worried Should You Be of Monkeypox?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
I think monkeypox is just similar to what we’ve been doing with COVID. Stay up to date on the spread of virus in your area. The CDC has a map now that you could check out so you know what the spread of monkeypox is in your area.
Steven Newmark 00:24
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:34
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:39
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:52
We sure do. As a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Thriving While Aching, one of our newest podcasts that inspires and teaches you how to live a fuller life while safely managing your pain. Alright, let’s start with a listener comment. Ready, Steven?
Steven Newmark 01:11
I am ready.
Zoe Rothblatt 01:12
This one came from Vanessa R., who wrote, “Thank you so much for covering important topics for our community.”
Steven Newmark 01:19
You’re welcome, Vanessa.
Zoe Rothblatt 01:21
Let’s dive into the news. As of this recording, you can now access a fourth COVID shot for those who may be reluctant to have any of the first three we got approved and that’s the Novavax vaccine.
Steven Newmark 01:32
I do know people who have been holding out for the Novavax vaccine. So there is a small segment of our population that is unvaccinated get willing to get vacced woth Novavax.
Zoe Rothblatt 01:45
Well, that’s great news, especially for our community who relies on the people around them being vaccinated for extra protection.
Steven Newmark 01:51
Yes.
Zoe Rothblatt 01:52
And I saw that this vote to authorize this vaccine and recommend it was a 12 to 0 vote. So you know, there’s a lot of support behind it, which is always good.
Steven Newmark 02:02
Absolutely.
Zoe Rothblatt 02:03
Next bit of news, I saw this survey found that public health workers are leaving their jobs.
Steven Newmark 02:09
I’m not surprised.
Zoe Rothblatt 02:10
So here’s the finding, Steven. This was a 2021 survey published this week in the Morbidity and Mortality Weekly Report and it found that over 40% of US healthcare workforce plans to leave their job within the next five years. And then on top of that, 51% said more staff were needed to respond to COVID.
Steven Newmark 02:31
Certainly the spring of 2020, we were all praising healthcare workers. And we asked them to do difficult work, put their lives at danger, respond to tough circumstances. And as the pandemic has waned, it seems as though the public’s appreciation for healthcare workers has also waned, not to mention that health care workers are still left stretched very thin. It was not an easy profession before the pandemic, but they’re still stretched thin. And it’s difficult. You know, you mentioned 40% of the workforce plans to leave their job within the next five years. But number one, a lot of Americans are leaving their jobs, generally. There’s a lot of mobility in the workforce nowadays. So that’s one thing to keep in mind. And also, just because someone says they plan to leave their job in the next five years doesn’t necessarily mean that they’re actually going to do so.
Zoe Rothblatt 03:15
Good point. There’s also a lot of people going into public health now with a newfound interest because the pandemic. So hopefully, there’s a good amount entering this field. I would say that the tricky thing as a public health person myself, the tricky thing about recognizing public health is that so much of the work is focused on prevention. When you think about vaccines, the idea of stopping the spread of disease through vaccines, it’s not spreading, you don’t see it. Public health is also responsible for cleaning the streets, workplace safety, and it’s a lot of being proactive and preventative measures. So you’ll people might not realize the achievements that public health has until they’re gone.
Steven Newmark 03:52
Public health folks are like the people who tell you to wear seatbelts. You know, it’s always tough to prove when you’re doing something in preventive work that the work you’re doing pays off, but it does. Of course, as we know.
Zoe Rothblatt 04:00
I wanted to quickly talk about the struggle that many in our community are having with finances in this current economy. Healthcare is expensive, right, Steven?
Steven Newmark 04:09
It depends where you live, what country. But yes, in our country, it certainly can be.
Zoe Rothblatt 04:13
True. You know, we recently published an article on CreakyJoints with tips for managing your health care costs. These are always helpful but especially right now and I wanted to go through some of the tips and see if you have any of your own.
Steven Newmark 04:26
Absolutely.
Zoe Rothblatt 04:26
Our first is always the most important, review your health insurance policy. You know, make sure your meds are covered. Review what types of plans are better for you. There’s different things like higher premiums, lower deductible or a higher deductible with a health care savings account. So it’s really helpful to sit down and look at some of that, depending on how often you take your medications.
Steven Newmark 04:48
Along the same lines, it’s important to review your benefits pretty closely. Sometimes your benefit plans have more financial benefits than you’re necessarily aware of. Get comfortable learning about how to use your flexible spending account. For example, some health policies provide reimbursement if you belong to a gym and actually prove that you go to the gym, there are other cost savings or other benefits that you may not be aware of.
Zoe Rothblatt 05:10
That’s a great point, I would say take advantage of telehealth, another great benefit and something that got more popular in COVID. Of course can save your time and also save money on gas if you’re traveling pretty far to go to the doctor.
Steven Newmark 05:22
Along those lines about saving on gas or sometimes it saves money, ask for a 90 day prescription rather than a 30 day for example.
Zoe Rothblatt 05:29
If any of our listeners have tips definitely write in to us. But those are just a few and you could check out more at creakyjoints.org.
Steven Newmark 05:38
I think we should also talk about there’s a new global emergency. We’ve talked about it before, monkeypox. For the second time in two years, the World Health Organization, WHO, has declared a global emergency.
Zoe Rothblatt 05:50
It sounds scary. As we look into it and discuss it, it may be less scary than we think it is. When this happened, I just felt like I don’t have the mental capacity to deal with this. Like I’m so emotionally tired from the past few years. I know we say when we talk things out together on this podcast, it really helps to just like allay a lot of those fears. And I’m hoping we could just talk about what we know and don’t know.
Steven Newmark 06:13
First, let’s start at the top. What does it mean to be declared a global emergency?
Zoe Rothblatt 06:17
It’s funny you asked this, because I looked into that because I was like, “Shoot, is this another pandemic?” But it’s actually not, it’s not the same thing as a pandemic. A global emergency, it’s a formal declaration from the World Health Organization of okay, here’s the quote, “An extraordinary event which is determined to constitute a public health risk to other states through international spread of disease and to potentially require a coordinated international response.” So it’s really just a call to action when you think about it.
Steven Newmark 06:48
And as I understand it, it also could unlock funding in global efforts to collaborate on sharing treatment and vaccines, they way we have done in the recent pandemic.
Zoe Rothblatt 06:55
Just a call to action to say that we need to work together because we’re seeing that this is spreading, but it’s not the same as a pandemic. So there’s a bit of relief. We’ve had a bunch of these; Swine 09, Zika, Ebola, and now monkeypox. We’ve had a bunch of these, not all of them have, of course, been as dramatic as the past two years living with COVID. The WHO met around a month ago to look at monkeypox and see if it should be declared a public health emergency. And at that time, they decided no, they met again. So, of course, it’s ongoing. And this committee comes together to bring a lot of experts together to look at the risk internationally and the spread and the risk to human health and decide what to do there on out.
Steven Newmark 07:38
I was actually involved. I was a very small piece of the puzzle when it came to Ebola. I was on a team that dealt with it specifically in New York City government. I remember swine flu. I remember Zika, I was also involved with Zika. Luckily, those never became full fledged pandemics in part, I have to think, folks smarter than you and I, Zoe, got together, the virologist, vaccinologists, epidemiologists to assess all those risks, and to tamp down and minimize the spread of these viruses.
Zoe Rothblatt 08:05
That kind of goes back to the top of the episode with public health successes. Thank goodness those didn’t turn out to a pandemic.
Steven Newmark 08:12
Absolutely. You got to stop it now before it becomes something.
Zoe Rothblatt 08:19
So what do we know so far about monkeypox? It’s most similar to smallpox, which is eradicated through global vaccine efforts in the 1980s. The reason it’s called monkeypox is because it was first discovered in a colony of monkeys used for research in 1958. But that doesn’t mean it originated with those animals. The source of the disease remains unknown, and it was also first detected in humans in 1970. So it’s so easy for us to compare it to COVID because that’s what we’ve been through and COVID-19 was the novel Coronavirus. This we have information about which brings me comfort.
Steven Newmark 08:54
The symptoms include fever, headaches, muscle aches, lack of energy, sounds familiar. You can also see a rash resembling pimples and blisters as well.
Zoe Rothblatt 09:03
I think that’s a key part of the spread, the rash, because the current outbreak is through human to human contact. So you can develop an infection from a droplet from respiratory particles if you spend too much time like face to face or through physical contact. So if somebody has one of those pimples, lesions, if you touch it, it can be exchanged through those bodily fluids, and you can become infected by touching the person or an infected surface.
Steven Newmark 09:29
The good news is that more than 99% of patients can expect to survive. Of course there are special considerations for our community who is immunocompromised and often at risk for serious illness. This is still new, so we will keep you updated as we learn more.
Zoe Rothblatt 09:42
On that note about what you could expect for how severe the illness should be, according to the World Health Organization, for the most part, the virus should just run its course and symptoms should clear up on their own in two to four weeks without the need for treatment. That’s still is like a long time. I’m going to be definitely taking my measures to keep myself safe. One of those measures is the vaccine and Steven, I was wondering if you could talk to us a little bit about what’s going on with this vaccine because I was a bit confused.
Steven Newmark 10:11
A few things I know, first of all, the vaccine itself is 85% effective against the virus. There are two types of vaccines, one of them is in limited supply. So keep an eye out on news when it might be more readily available. And the other vaccine has certain indications that folks with some skin conditions and those with a weakened immune system, so pay pay attention there and people who are pregnant should not be taking this one. The US is working to get additional doses of the vaccine. And the goal is to vaccinate groups where monkeypox is spreading, including in people who’ve been exposed to someone with the virus or simply more at risk. It goes jurisdiction by jurisdiction. Most jurisdictions have limited the availability of the vaccine. Where they even have the vaccine, I believe it’s to gay men who are sexually active. But of course, talk to your doctor for more specifics.
Zoe Rothblatt 10:56
And it’s not a sexually transmitted disease, it’s just that it could be transmitted through bodily fluids. So by nature, the risk of having sex is you know, sharing bodily fluids and putting you at risk. But I just want to make that clear, because that was confusing for me at first.
Steven Newmark 11:13
Right.
Zoe Rothblatt 11:14
What else can we do?
Steven Newmark 11:15
The CDC advises people to be extra cautious when there isn’t a lot of personal space. It sounds kind of obvious, but always be careful when you’re interacting with anyone you don’t know. That’s true for any disease or any virus, you’re always going to want to take extra care and, and precautions in how you interact with people you don’t know.
Zoe Rothblatt 11:32
I think this is just similar to what we’ve been doing with COVID. Stay up to date on the spread of virus in your area. The CDC has a map now that you could check out so you know, similar to how we’ve been doing with the COVID. And look at the county level so you can know what the spread of monkeypox is in your area.
Steven Newmark 11:50
The only weekly update that’s shared publicly on monkeypox vaccines is a weekly update from the US Department of Health and Human Services. They detail how many doses have been distributed to each state. And then as I mentioned, it’s up to each state to determine how they want to make those distributions.
Zoe Rothblatt 12:04
Unfortunately, if you are experiencing symptoms, or you believe you are in contact with someone who has it, you’re supposed to isolate yourself. The WHO is advising for people to isolate for three weeks, which is pretty tremendous and takes a lot of privilege to be able to do that. And then of course, you should reach out to your health care provider to figure out whether he should be tested or vaccinated because I heard you could also get vaccinated shortly after exposure to the virus too. Overall I feel like there’s enough information in place. So we’re not totally in the dark about this.
Steven Newmark 12:37
I’m hesitant to be too optimistic only because there’s just not that many vaccines available. There’s a dearth, I see it in my local community, people who are interested in getting vaccinated are unable to do so. People, even people who are eligible are finding it’s not quite so simple. So like anything else, you see a little fire in the corner, you want to stamp it out before it becomes a big fire and the whole house burns down like COVID. Right now, it’s still a little fire in the corner. It’s growing ever so slightly. And I’m hopeful that I think the majority of the public is like, “Ah, I can that’s gonna go away on its own. If it doesn’t, I don’t care.” But that’s what public health folks do. Folks like us make a little bit of noise. Folks who are epidemiologists do the research, virologist, vaccinologists are doing what they need to do and local public health officials hopefully will obtain enough vaccines and be able to actually stamp it out before the public even raises arms, to be honest. That’s the hope. For sure. And that’s our role as advocates just to advocate for continued access to vaccines, to information, just getting the information out is so important. Well, we hope that was helpful.
Zoe Rothblatt 13:42
For sure. That brings us to the close of our show. Steven, what did you learn today?
Steven Newmark 13:46
I learned from you, Zoe, the difference between a public health emergency, a global public health emergency, and a pandemic, the different levels for getting from one to the other. So thank you for that, Zoe.
Zoe Rothblatt 13:57
Of course, and I learned from you about the vaccine for a monkeypox and what we should be looking out for and who is most at risk.
Steven Newmark 14:05
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 14:16
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 14:23
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 14:28
Well everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts, and definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 14:46
I’m Steven Newmark. We’ll see you next time.
Narrator 14:51
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 7- We Have a Doctor in the House
Each day seems to present new questions about COVID, its variants, and the best vaccines. In this episode, we get clear answers from GHLF’s own Dr. Daniel Hernandez about our risks to contract COVID and whether to wait for a new vaccine to come to market before getting boosted.
“You should get a COVID vaccine even if you have already had COVID. There’s no way to know how long immunity lasts after the infection,” says Dr. Hernandez, Director of Medical Affairs and Hispanic Outreach at Global Healthy Living Foundation. “There are very specific vaccines that are coming out. We have to make sure that we’re up to date with those as well in order to protect ourselves in the best way possible.”
S4, Ep 7- We Have a Doctor in the House
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Daniel Hernandez 00:08
You should get a COVID vaccine even if you have already had COVID. There’s no way to know how long immunity lasts after the infection. There’s very specific vaccines that are coming out. We have to make sure that we’re up to date with those as well in order to protect ourselves in the best way possible.
Steven Newmark 00:28
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at Global Healthy Living Foundation.
Zoe Rothblatt 00:37
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:41
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:54
We sure do. And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Wellness Evolution. Don’t forget to check out those Breathing Breaks, with guides on breathing through stress and anxiety. So Steven, let’s start with a listener comment as we always do. Ready?
Steven Newmark 01:12
I am ready.
Zoe Rothblatt 01:13
This one is from David P. who wrote, “I look forward to this weekly show.”
Steven Newmark 01:17
I look forward to it as well, David. Thank you for writing in.
Zoe Rothblatt 01:20
Thank you so much. We do have a special guest here with us today, our colleague, Dr. Daniel Hernandez, who’s here to talk to us about vaccines and what’s going on with the COVID vaccine. And we do look forward to that conversation. But first, we have some news updates. Steven, I know you love these, our GHLF Patient Support Program quick poll results. So this time we asked if immunocompromised people living in our community have got their fifth shot for those who got the mRNA series, that’s Pfizer and Moderna. Interestingly enough, only 25% said yes, that they have got their fifth shot already.
Steven Newmark 01:57
That’s fascinating, because I remember in a prior poll, 78% said they had gotten their fourth shot. So there’s a big drop off between the fourth and fifth.
Zoe Rothblatt 02:04
And in the free response section, we got some answers to that drop off. It became clear that many are worried about the new variants and are waiting for a variant specific vaccine that could maybe be coming this fall. People are also simply just unaware of this recommendation, just learned about it.
Steven Newmark 02:22
This recommendation was sort of tucked away on the CDC’s website. There was no grand announcement by any means. So we’ve got some work to do, because it’s our job at GHLF and at Health Advocates to make sure people know, if you are immunocompromised, you are eligible for a fifth shot. But I do understand the desire to potentially wait for something that is more variant specific.
Zoe Rothblatt 02:40
For sure. And definitely just talk to your doctor about it to figure out what’s right for you.
Steven Newmark 02:45
What else we got in the news this week?
Zoe Rothblatt 02:47
So UnitedHealthcare, the health insurance company, nixes insulin co-pays. They announced that they’ll eliminate out of pocket costs. It’s a little tricky and standard fully insured group plans for certain preferred prescription drugs.
Steven Newmark 03:01
This includes insulin and similar drugs used to treat emergencies such as severe allergic reactions, hypoglycemia, opioid overdoses and acute asthma attacks.
Zoe Rothblatt 03:10
This is huge. Eliminating out of pocket costs just really helps reduce the burden and medical costs, especially when you live with a chronic illness. Insulin is something you need to take regularly. So you’re regularly paying that bill. So to say that it’ll be $0 really does help and encourage patients to be able to refill their medication.
Steven Newmark 03:28
Absolutely. This is great news. We can’t take credit specifically for this. But this is what we do here is we advocate for things such as this. Trying to lower barriers to access, lower costs for patients. And generally speaking, this is something that we have been fighting for for years. So we’re happy to see this announcement.
Zoe Rothblatt 03:44
For sure. I hope to see other insurance companies follow suit. Our last piece of news, I saw that unfortunately kids vaccines are really hard to find in Florida and many parents are struggling to find a place to vaccinate their children.
Steven Newmark 03:58
Not surprising considering Florida was the only state that refused to preorder the vaccines. They also are the only state to prohibit county health departments from distributing or administering the shots. So you essentially have to go to your pediatrician.
Zoe Rothblatt 04:11
And because of that, the waitlist at pediatricians offices are stretched for weeks. Doctors who do have doses are fielding calls from parents miles and miles away who are just trying to find it in somewhere. And I even saw on the news that families are debating road trips to neighboring states to try and get their kids access to the vaccine.
Steven Newmark 04:30
I do wonder if that also has an effect on pediatric practices generally being overburdened with this. Whereas with the other distributions and other states and with adults, the vaccines were given out mostly outside of the realm of primary care doctors. I hope it’s not taxing the system too much in that regard.
Zoe Rothblatt 04:47
It’s unfortunate to hear this and we’ll keep watching and see where this leads and how we could advocate for children to have better access.
Steven Newmark 04:55
This week, we’re excited to have a special guest here with us, our colleague, Dr. Daniel Hernandez. How are you today, Daniel?
Daniel Hernandez 05:01
I’m fine. Thank you, Steven. And thank you, Zoe, for having me. I’m very excited to be here.
Zoe Rothblatt 05:06
Welcome, Daniel. We’re so excited to have you on The Health Advocates. I’d like to ask you to begin by introducing yourself and what you do here with us.
Daniel Hernandez 05:14
Yeah, my name is Daniel Hernandez. I’m the Director of Medical Affairs and Hispanic Outreach for Global Healthy Living Foundation. We connect patients who are from underserved communities, such as Hispanic community, specifically prefer to speak Spanish with the correct information and resources in order to manage their chronic illness.
Steven Newmark 05:32
Daniel is a great resource for all of us at GHLF. It’s great to have an MD on staff that we can go to with our medical questions. And today, we’re excited to talk with Daniel about vaccines. Can you just give us a basic overview of how vaccines work and provide protection from disease?
Daniel Hernandez 05:50
Sure. Basically, what vaccines are, they’re very simple. They stimulate different branches of your immune system, right? So they stimulate B cells, T cells, antibody levels, to increase and fight the pathogen when you’re exposed to it. That’s all it does. It’s very simple. And that’s been working since the 1700s.
Zoe Rothblatt 06:10
If the vaccines are so simple and work, what role do boosters play? Why do we need those?
Daniel Hernandez 06:15
So those antibody levels that I had just spoken about, they fade away with time. But the B cells, they stay in your body as memory cells. And whenever you’re exposed to that pathogen again, they’re basically like surveillance. So once you’re exposed to that pathogen again, these B cells will recognize the pathogen, and they’re going to start stimulating your immune system. Sometimes it’s recommended to be up to date on these boosters in order to have the strongest immune system possible in order to fight the pathogen. This is especially important when your immune compromised or also, if you’re older than 50 years of age.
Steven Newmark 06:56
Why do vaccines cause side effects?
Daniel Hernandez 06:58
That’s a really good question. In most cases, discomfort from pain or fever is normal. It’s a normal sign that your body is building protection. And it should go away very, very quickly in a few days. If it doesn’t go away in a few days, it’s important to go to the doctor and speak to your doctor about this and just see if it’s an adverse effect. So that’s something that sometimes happens to people, it’s rare. But if it does happen, then your doctor can help you in treating it. And if the side effect is in the rare side of things, then obviously your doctor can help you. But usually, it’s just normal, it’ll go away very quickly.
Zoe Rothblatt 07:35
Well, that’s comforting to hear. We always talk about paying attention to your symptoms and writing them down. So if you know that for a vaccine, it should go away quickly. You could keep jotting down if things are lingering, and then talk to your doctor. Daniel, we’re getting a lot of questions from our community and a big popular one has been, “Should I get the vaccine or a booster if I’ve already had an been sick with COVID?”
Daniel Hernandez 07:59
We’ve been hearing that quite a bit, I know. And the answer is you should get a COVID vaccine even if you have already had COVID. There’s no way to know how long immunity lasts after the infection. And the immune response can vary by a wide variety of things. So it’s the time since the infection, your age, the severity of your illness. And also, as we’ve been hearing all of these strains and variants of the COVID-19 pathogen. So we have to make sure that we’re up to date. And as you both were mentioning that there’s variant specific vaccines that are coming out, we have to make sure that we’re up to date with those as well, in order to protect ourselves in the best way possible.
Steven Newmark 08:42
What is the current state of the COVID vaccine? Does it offer protection? How long is that protection? How safe should we feel?
Daniel Hernandez 08:49
The vaccine will be effective in all of these variants. The level of effectiveness that it will have is still an ongoing research issue. But the bottom line is that it’s very important to get vaccinated because you will build some sort of immunity against the COVID-19 and its variants. So it’s very important to get vaccinated.
Zoe Rothblatt 09:11
We know that it’s kept people out of the hospital, we know that the vaccines have helped protect against severe infection. So while you’re saying that even though we don’t know how much it’ll protect you and you may get sick and feel uncomfortable, we do know that it’s doing its primary purpose of eliminating severe infection for the most part.
Daniel Hernandez 09:30
Absolutely. For the most part, that’s exactly it.
Zoe Rothblatt 09:32
So what are some tips for advocating for yourself when it comes to deciding when you should get the vaccine, where to go, how to talk about it? What is your advice for a patient navigating those conversations?
Daniel Hernandez 09:44
That’s the best advice is speaking to your physician about this. Sometimes it’s difficult to have those conversations especially when the time crunch is so short. A recommendation that we usually tell our patients is call the doctor’s office, leave a voice mail, you’ll get a response back in due time. And express to your physician the issues that you’re having. If it’s the medications that you’re taking, and the hesitancy that you’re having to take the medications plus the vaccine. That’s something very important to speak to your doctor about. Usually, it’s not an issue, the medications that you’re taking and the vaccine, but it’s always very, very important to just double check.
Steven Newmark 10:21
I feel like you’ve given such great advice and thoughts and overviews of the vaccine for our listeners. And we greatly appreciate your time, Dr. Hernandez, and Daniel, my friend. We look forward to your continuing advice. We’d love to have you back on the show one day to check in and see how things are going.
Daniel Hernandez 10:38
Anytime. Thank you so much, Steven.
Zoe Rothblatt 10:39
Thank you, Daniel. It was wonderful to have you on.
Daniel Hernandez 10:42
Thank you so much, Zoe. Have a great, great day.
Zoe Rothblatt 10:45
All right, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 10:49
I found it fascinating the survey that you had mentioned, only 25% of folks who are immunocompromised in our community have taken the fifth shot. And I found it interesting some of the reasons. Number one, not knowing that fifth shot is available and number two, waiting for a vaccine that’s more variant specific. I found that to be just interesting.
Zoe Rothblatt 11:07
And I was reminded by Daniel about the importance of talking to your doctor about your concerns when it comes to the vaccine and your preferences too, and how important that shared decision making is.
Steven Newmark 11:19
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 11:30
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 11:37
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 11:42
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts, and definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 12:00
I’m Steven Newmark. We’ll see you next time.
Narrator 12:06
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 6- Patients Spark Action on Methotrexate
The recent abortion ruling by the U.S. Supreme Court created an unintended consequence for patients seeking methotrexate, a drug which prolongs the lifespan of people with rheumatoid arthritis and other inflammatory diseases. In this episode, learn how GHLF is championing the cause and advocating for these patients.
“Imagine what patients are going through…They’re told that they’re no longer able to fill that prescription because of a change in a law,” says Conner Mertens, Patient Advocate and Community Outreach Manager at Global Healthy Living Foundation. “It’s really scary time for some of these patients.”
S4, Ep 6- Patients Spark Action on Methotrexate
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Conner Mertens 00:09
Imagine what patients are going through, they’re gonna go to their pharmacist to fill their prescription they’ve been doing for years now. And they’re told that they’re no longer able to fill that prescription because of a change in a law that they might be able to bear children. It’s really scary time for some of these patients.
Steven Newmark 00:26
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I have Steven Newmark, Director of Policy at the Global Healthy Living Foundation. Today we have a special co-host joining me, Conner Mertens.
Conner Mertens 00:38
So glad to be here, Steven. I’m one of our Patient Advocates and Community Outreach Managers at the Global Healthy Living Foundation.
Steven Newmark 00:44
Zoe’s out helping patients today, but it’s great to have Conner in the co-hosting chair this week.
Conner Mertens 00:48
You know we love helping patients around here, Steven.
Steven Newmark 00:50
Of course. Today we will be discussing the ongoing access issues with methotrexate in the wake of the Supreme Court’s Dobbs versus Jackson decision. And Conner talks extensively to our patients, so he’s the perfect co-host as we continue to explore this issue and try to help patients.
Conner Mertens 01:04
Thanks, Steven. It’s terrible what patients are going through, an unintended consequence of the Dobbs decision. But I’m grateful for the work that we’re doing with GHLF in our community to help bring awareness to this issue as it’s unfolding in real time.
Steven Newmark 01:17
Absolutely. Before we get started, we want to remind everyone that our goal at The Health Advocates is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. We always highlight one of GHLF’s great podcasts, so this week, Conner is here and can tell us about his podcast, Healthcare Matters.
Conner Mertens 01:33
Along with my co-host, Dr. Robert Popovian, we take these complex healthcare policy and economic issues and break them down to something that’s a little easier to understand. Because, you know, Steven, how confusing that can get.
Steven Newmark 01:44
No, that’s true. I’m grateful to both you and Robert, as I need help understanding some of the complexities when it comes to healthcare matters. And we also start out with a listener comment. Are you ready to hear one, Conner?
Conner Mertens 01:54
We always love hearing from the listeners.
Steven Newmark 01:55
Well, this one is from Adrian T. who wrote, “Thank you for covering and raising awareness on the methotrexate access issue.”
Conner Mertens 02:01
We’re always trying to make sure patients are up to date and this is such a topical and timely issue that we’re here to tell you all about it.
Steven Newmark 02:07
Absolutely. And today we’ll talk a lot more about methotrexate. But before turning to that issue, let’s get folks updated on some other important news around the country. A new study came out this week that found that Drug Formularies often have exclusions that could harm your health or cost you more money.
Conner Mertens 02:23
And as you know, formulary is a list of preferred drugs that a health insurance company agrees to cover during their policy.
Steven Newmark 02:30
The researchers, which were led by our colleague and your co-host on Healthcare Matters, Dr. Robert Popovian, found that there were 563 drugs excluded from this particular formulary. Over 40% of the time those exclusions mandate a provider to prescribe a non therapeutic equivalent medicine based on differences in active ingredients or formulation.
Conner Mertens 02:50
And we also saw that a small percentage were complete executions, meaning that there was no recommended alternative on the formulary.
Steven Newmark 02:57
Right. So here’s what you can do. This is an issue that obviously affects patients, and patients unfortunately can’t control Drug Formularies. But what you can do is look around at different health plans to make sure that you choose a health plan that has your preferred doctors and hospitals are in network.
Conner Mertens 03:11
And check the formulary to ensure that any drugs you take for chronic conditions are going to be covered and work with your provider and make sure to check the formulary to ensure any drugs that you take regularly for your chronic conditions are going to be covered.
Steven Newmark 03:25
Before we turn to the methotrexate issue, again, we should give a little update as COVID cases continue to rise. Because the Omicron invades infection based and vaccine based antibodies, then BA.4 and BA.5 variants are taking over as the dominant forms of COVID and driving up positivity rates across the country. But unfortunately, spotty testing and data collection has really hampered the nation’s ability to accurately track the new number of cases.
Conner Mertens 03:49
It’s interesting. I feel like every week I hear another friend that has a text that says they can’t make it to something because they got COVID. And thankfully, they’re staying home and being smart. But all across the country. It’s it sounds like we’re just seeing these these numbers creeping back up and not a lot of mitigation tactics that are being taken.
Steven Newmark 04:07
And we’ll remind our listeners if you’re immunocompromised, or just in the interest of protection, please do wear a high quality mask when you’re indoors. Wear an N95, a KN95, or a KF94 when in public indoor settings and around crowds.
Conner Mertens 04:20
And Steven, I’d like to remind your listeners that they can go to covid.gov and pick up their free tests and they absolutely should. They’re just good to have around.
Steven Newmark 04:28
So let’s get into the methotrexate issue. After the recent Supreme Court decision, GHLF has been hearing from patients around the country that they are now facing additional problems getting their methotrexate treatment because of it’s used in treating ectopic pregnancies.
Conner Mertens 04:41
And let me just say that you and Zoe have been doing a stellar job of making sure that the message is getting out to the community and also the entire country. I have seen you getting your voice out there in LA Times, MSNBC, Time Magazine, ABC News and the BBC. So we’re going international with this issue.
Steven Newmark 04:58
Well, thank you, Conner, but a bigger thanks goes to our patients for sharing their stories. Conner, what are you hearing directly from our patients?
Conner Mertens 05:04
Well, it’s scary. It’s exactly what you described, patients are seeking to fill their prescriptions only to be denied. And these patients have been on these medications, sometimes for years and stable for years. And so it’s really kind of up ending their lives or just causing a lot of severe emotional concern about what could happen.
Steven Newmark 05:21
The time from when you first feel an ailment for a chronic illness to the time it takes to go through, get a diagnosis, and then often the trial and error period when trying out different kinds of medication takes years and for a patient to become stable is really the culmination of a long process. So to take stable patients and to halt their prescriptions for no good reason is just horrific.
Conner Mertens 05:46
Yeah, imagine what patients are going through Steven. They’re gonna go to their pharmacist to fill their prescription, they’ve been doing normally for years now. And they’re told that they’re no longer able to fill that prescription because of a change in the law, that they might be able to bear children. It’s really scary time for some of these patients.
Steven Newmark 06:03
When you say some of these patients, let’s clarify that we are only talking about women of childbearing age. It’s approximately half the population. We’ve also been hearing of a few instances where doctors had to verify clinical criteria and say that this diagnosis code is particular to this and go through a patient’s diagnosis code and patient’s history, which is still bad because it delays patients even for a little bit.
Conner Mertens 06:25
And any delay in care can really affect a patient’s quality of life. Even just a few days of not getting their regularly scheduled medications can can have drastic consequences. And there’s this fear, we’re hearing anecdotally that people are scared because methotrexate is used for abortion. We’re seeing it on social media that women are concerned about losing access to his medication that they’ve been stable on for years, which is ultimately what we’ve been talking about.
Steven Newmark 06:47
We at GHLF sent a letter to Texas Governor Greg Abbott, seeking clarification that the state of Texas explicitly allows for the distribution of FDA approved drugs such as methotrexate to patients with valid prescriptions.
Conner Mertens 06:59
We’re also happy to announce that the Biden administration is taking the best steps that it can to protect access to reproductive health services. Can you tell us a little bit more about that?
Steven Newmark 07:08
Yes, the administration issued a memorandum that states that under federal civil rights law, pregnancy discrimination includes discrimination based on current pregnancy, past pregnancy, potential or intended pregnancy and medical conditions related to pregnancy or childbirth. Further, the Federal Department of Health and Human Services is sending more than 60,000 retail pharmacies a copy of this memorandum this week. Citing provisions in the Affordable Care Act and the Rehabilitation Act of 1973, the memo also states that pharmacies that receive federal funding cannot discriminate based on their views on contraception and abortion in regards to supplying medications such as methotrexate, making determinations regarding sustainability of a prescribed medication for a patient or advising patients even about medications and how to take them.
Conner Mertens 07:53
Thanks, Conner. And thank you to our listeners who always help to keep us informed. Well, Conner, we always end our show by sharing with our audience what we learned today, what did you learn? And as a reminder, medications approved by the US Food and Drug Administration, the FDA, they’ve undergone extensive review and once approved can be prescribed by doctors and used by patients as they’re indicated. So there should be absolutely no reason for any person prescribed methotrexate to be fearful of losing access. It’s a vital medication used by millions of people living with arthritis, psoriasis, and a plethora of other conditions. If you’ve been affected by this methotrexate issue, it’s critical that we hear directly from patients on this. Please email us, you can email me directly. That’s [email protected] And we’ll make sure that you get a megaphone to tell your story. I learned that despite everyone kind of saying we’re out of this pandemic, we’re certainly not out of this pandemic. We still gotta be taking those mitigating steps and looking out for one another.
Steven Newmark 08:50
And I learned just in talking to you, it was great to distill a complex issue, this complex science policy issue, that was fun to do. So thank you for that. Well, we hope that you’ve learned something too. We’d love to hear from you about your advocacy stories or what’s going on in your world. Send your emails to [email protected] Or better yet, include a short video or audio clip.
Conner Mertens 09:13
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 09:19
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Conner Mertens 09:24
Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. It was great to be part of the show, Steven. Thanks for having me. You and Zoe are invited on to Healthcare Matters whenever you want. If you liked this episode, give us a rating and write a review on Apple Podcasts. And don’t forget to hit that subscribe button, it’ll help people like you find us. I’m Conner Mertens
Steven Newmark 09:44
Steven Newmark, we’ll see you next time.
Narrator 09:49
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 5-Methotrexate: Confusion and Controversy
If you’re immunocompromised, you’re tired of having to fight for basic health care. But after the U.S. Supreme Court issued Dobbs vs. Jackson which overturned Roe vs. Wade, access to the drug methotrexate, which prolongs the lifespan of people with rheumatoid arthritis, is being denied in some states due to its connection to abortion.
“There’s so much confusion and overwhelm with managing such a dynamic fluctuating condition like inflammatory arthritis, that when you finally find through trial and error, a medication regimen that works for you, it’s like striking gold,” says Cheryl Crow, founder of Arthritis Life. “So, to know that suddenly that’s going to be taken away from you, it’s really scary to a lot of patients.”
S4, Ep 5-Methotrexate: Confusion and Controversy
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Cheryl Crow 00:08
There’s so much confusion and overwhelm with managing such a dynamic fluctuating condition like inflammatory arthritis, that when you finally find through trial and error, a medication regimen that works for you, it’s like striking gold. So to know that suddenly that’s going to be taken away from you, it’s really scary to a lot of patients.
Steven Newmark 00:30
Welcome to The Health Advocates, a podcast that breaks down on major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:40
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:45
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. You have so many to choose from.
Zoe Rothblatt 00:58
We sure do. And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Thriving While Aching, one of our newest podcasts that inspires and teaches you how to live a fuller life while safely managing your pain.
Steven Newmark 01:14
Yes, I’ve taken a listen. It’s a great podcast hosted by Dr. Laurie Ferguson. It really helps, as we like to say, live your best life.
Zoe Rothblatt 01:21
Thriving while you’re aching, like the name says. All right, let’s start with the listener comment as we always do. Ready, Steven?
Steven Newmark 01:28
I am ready.
Zoe Rothblatt 01:29
This one is from Taylor D who wrote, “Thank you for keeping me informed on the latest issues for those with chronic illness.”
Steven Newmark 01:35
Thank you, Taylor for the comment. Much appreciated.
Zoe Rothblatt 01:39
All right, let’s jump into our news. I saw that many Washington counties are starting to wear masks again, after they’ve been rated as a high community level by the CDC.
Steven Newmark 01:49
In Washington State, the CDC has shown that 15 counties have high levels of COVID-19. And as such, they’re asking folks to mask up again.
Zoe Rothblatt 01:57
And as a reminder, high means that you’ve had 200 or more new COVID cases per 100,000 people in the last seven days or more than 20 new COVID hospital admissions per 100,000 in a seven day period. So given that they’re asking to mask up.
Steven Newmark 02:15
I think we’re starting to feel another wave or a wavelette, mini wave, the BA.4, BA.5 wave.
Zoe Rothblatt 02:21
And the CDC has a really good tracker on their website. So if you’re wondering, it’s pretty simple to look it up. And just for our community’s immunocompromised, of course mask indoors, you should take extra precautions like distancing, avoiding crowding areas.
Steven Newmark 02:36
Absolutely. So what else is happening in the news?
Zoe Rothblatt 02:38
Well, I saw that Aetna, the health insurance company, dropped prior authorization for most cataract surgeries.
Steven Newmark 02:45
Great.
Zoe Rothblatt 02:45
So this means that patients won’t need a pre-approval.
Steven Newmark 02:49
And this covers all patients except those enrolled in Medicare Advantage in Florida and Georgia.
Zoe Rothblatt 02:54
This was a big win because there was pushback, I think about a year ago, Aetna announced that there would be this prior authorization. And what they’ve said is that the indications for cataract surgery are well established. That’s what the doctors were arguing. And the benefits are so clear, so this extra step is a really big imposition. It’s good to see that now they’re walking that back and people have more access. And Steven, we hear all the time from our patients about delays with prior authorization. We know how annoying that is.
Steven Newmark 03:22
Yeah, well, I have big news. This is big to me. Here in New York City, officials are working to increase the number of public restrooms. Very happy for me.
Zoe Rothblatt 03:32
Oh, my goodness, this is so exciting. You can’t be a New Yorker and not have a story about desperately trying to find a bathroom. It feels like there’s none, especially as an IBD patient. It really feels like there’s none.
Steven Newmark 03:44
Totally. I’ve definitely done my fair share of walking into restaurants. “Yeah, I’m just waiting for my friends. While I wait, I’m just gonna run to the restroom.”
Zoe Rothblatt 03:52
I know and you want to have easy access. You don’t want to have to come up with a cover story like that. So this is great news.
Steven Newmark 03:58
New York, by the way, ranks 93rd in the United States in its ratio public restrooms to people with just 16 public restrooms for 100,000 inhabitants.
Zoe Rothblatt 04:07
Wow.
Steven Newmark 04:07
So there’s legislation in the New York City Council that would require the New York City Department of Transportation and the City Department of Parks and Recreation to submit a joint report to the Mayor and the City Council Speaker that identifies at least one location in every one of New York City’s zip codes, there’s 214 zip codes in the city, that would be suitable to install a public restroom.
Zoe Rothblatt 04:28
That’s awesome.
Steven Newmark 04:29
This is a big win for our IBD community who often has an urgent need for restroom access. So this is great.
Zoe Rothblatt 04:34
Especially with COVID.
Steven Newmark 04:36
Right!
Zoe Rothblatt 04:37
I know it’s harder to get into a restroom. Whether it’s part of a private facility or a public facility. There’s more restrictions and for an IBD patient or digestive disease patient who has an urgent need to go to the bathroom and often can’t wait, you don’t really have time to explain, “Listen, I have IBD, I really gotta go,” because you really have to go so to increase the number of public restrooms really does make a difference in quality of life. And our last big piece of news, we touched on it in our last episode is the issue of methotrexate access. Steven and I had an interview with Cheryl Crow, who’s an occupational therapist, rheumatoid arthritis patient. And we talked a lot about this issue and I’m excited for you to listen.
Steven Newmark 05:19
Yeah, I’m excited too. Here at GHLF we’ve been working a lot on this issue the last few days. It’s unfortunate in the wake of the Supreme Court decision that overturned Roe vs. Wade, in multiple states where abortion is now illegal there have been access issues to methotrexate.
Zoe Rothblatt 05:36
Methotrexate is a drug that’s commonly used in our community to treat autoimmune arthritis. And it also has this secondary use at higher doses to be used for an abortion for an ectopic pregnancy. And in some states that have stricter abortion laws, it’s now being restricted as an abortion inducing medication. And pharmacists are nervous because the law states that it’s a felony if you’re dispensing this medication for an abortion. Of course, our community is using it for a completely different purpose. But we’ve been hearing that as a result of laws that are coming out that people are having to extra validate their prescriptions or getting denied. And there’s a lot of fear in our community. So we just want to sit down with Cheryl who’s been a large voice in advocating on social media and hear what she’s thinking about this issue and how she’s advocating. This week on The Health Advocates, we have a special guest here with us, Cheryl Crow, who is an occupational therapist, rheumatoid arthritis patient and founder of Arthritis Life. Hi, Cheryl, how are you today?
Cheryl Crow 06:36
Hi, I’m great. Thanks so much for having me.
Zoe Rothblatt 06:39
Of course, do you want to kick it off by telling us a little bit about Arthritis Life and what you do?
Cheryl Crow 06:44
Yeah, yeah. So I personally have had rheumatoid arthritis for 19 years now. And after becoming an occupational therapist, I noticed so many patients with inflammatory forms of arthritis like rheumatoid, they really needed help with daily living tasks. And if I could summarize occupational therapy, because a lot of people don’t know what we do, it would be that we are life skills specialists. So every little barrier or annoyance in your life, from opening jars to difficulty navigating the healthcare system, we are really experts in those life skills. And so I started Arthritis Life to fill a gap I saw in patient education and support. I thought that people needed more rigorous, in depth access to support groups and education. So I’ve put together some of my own courses and online support groups. And it’s been a wonderful experience. Plus, I also do a lot of, I guess you call it outreach, on social media through sharing my personal and professional life hacks for arthritis.
Zoe Rothblatt 07:41
We’re so appreciative of what you do. Just something funny to point out that you mentioned about the jar, I remember you are the one who showed me about the electronic jar opener and it is life changing. So do not dismiss these small tricks. They really help.
Cheryl Crow 07:55
Everything’s interrelated. And I sometimes joke that my unofficial tagline for Arthritis Life is “Come for the life hacks stay for the emotional support.” Because really, at the end of the day, that is actually what I’m really the most passionate about is helping people with coping skills to cope with all the uncertainties and ups and downs of chronic illness. And something as simple as having difficulty opening a jar or zipping up your jeans, it does profoundly affect your emotional life too. Especially as a young person with chronic illness, you don’t want to feel like you can’t do basic daily living tasks. So yeah, I’m a big proponent of small gains add up over time
Zoe Rothblatt 08:33
100%. I love tuning into your tips. But you know, you brought up something about emotional support. We’re here today to sort of talk about this huge emotional issue going on. Patients around the country here in the US are having trouble either accessing their methotrexate or fearing that they’re going to lose access to their methotrexate. I’m wondering if you could kick us off with a recap of what’s happening.
Cheryl Crow 08:57
Yeah, like with everything else in autoimmune disease, everything becomes complicated really quickly. Methotrexate has been the gold standard starting treatment for rheumatoid arthritis for many, many decades, and it’s very cheap and effective. So it was really surprising to a lot of people that suddenly it was being denied because in rheumatoid arthritis, we’re used to medications being denied that are the expensive specialty tier medications like the biologics. So the reason is because methotrexate is not only used for lupus and rheumatoid arthritis and similar conditions, it’s also used at higher doses to end a ectopic pregnancy. And so when the Supreme Court overturned Roe versus Wade, certain states, not the majority, but certain states like Texas have written into their laws, specifically calling out methotrexate as something that is not okay to be prescribed anymore. This is not legal advice. And the legal part is very overwhelming and confusing, but basically, the result is that there has been a lot of confusion on the part of doctors and particularly pharmacists on whether they are still allowed to prescribe this in cases that don’t have anything to do with reproductive health like the case of rheumatoid arthritis.
Zoe Rothblatt 10:14
It’s so terrible that this is happening. And because methotrexate is restricted as an abortion inducing drug, what does that mean for patients in our community who take it for completely different uses? And I think we’re hearing a lot of noise on social media, the chronic illness community is loud and advocating, as usual, I wanted to ask, what is the sense that you’re hearing about patients on social media and their access issues?
Cheryl Crow 10:40
I think it’s really example of insult to injury because we have to look at the context of this happening. It’s not just one lone instance of a medication being denied. For many people, this is like the third major barrier they’ve had for getting their medication. The first one might be they were denied a biologic because of their insurance wanting them to fail a cheaper medicine first, ironically, which is using methotrexate. And then secondly, they might have been denied Plaquenil during the pandemic earlier, because of that being used for COVID. And then now this is the third thing. And I think that there’s so much confusion and overwhelm with managing such a dynamic fluctuating condition like inflammatory arthritis, that when you finally find through trial and error, a medication regimen that works for you, it’s like striking gold, right? And it can take a long time. And it can take a lot of pain to get to that point where you’re like, “Okay, finally, I found the combination that’s working for me.” So to know that suddenly that’s going to be taken away from you is it’s really scary to a lot of patients. I could group two different groups, there’s the newly diagnosed patients, and then there’s the established patients. The newly diagnosed is hard because many of them are initially scared to start any medication period, because it’s a new thing for them, right? And they’re scared of side effects. You go from scared of taking methotrexate to, “Wait a minute but I want the option of taking it, if my doctor says I need it, I want to take it.” So it’s very overwhelming. And I think the third or fourth blow would also be that a lot of patients are autoimmune patients. Right now we know that we’re immunosuppressed, the degree to which we are immunosuppressed is still kind of confusing to many of us. I am an optimist by nature, I think this issue is going to be resolved in the majority of cases. And right now, in the majority of states, there isn’t an issue getting the methotrexate, but we’re tired of having to fight for the basic standard of care we deserve to get.
Zoe Rothblatt 12:34
It isn’t fair. And it’s also not fair because these are not based on medical decisions. You and your doctor know your personal history, your medical history, your lifestyle, and you’ve chosen to use all that to make an informed medical choice with your doctor. And then this outside thing is stepping in and saying, “Well, for no medical reason, we’re going to take you off your medication and now your stable health is put at risk,” which is just so unfair.
Cheryl Crow 12:57
It is. This medication, methotrexate alone, is associated with an increase in lifespan. So this is not just a quality of life issue. This is literally a life prolonging medication. And there was an article even back in 2002, Choi et al, “Methotrexate and mortality in patients with rheumatoid arthritis,” that clarified there is typically a 10 year reduction in lifespan for rheumatoid arthritis. That’s huge. Instead of living to 75, I’m gonna live to 65.
Zoe Rothblatt 13:24
And with a better quality of life, because these medications are reducing your symptoms and pain and reducing the joint damage and you’re able to live so much better with modern medicine.
Cheryl Crow 13:36
Exactly, like quality of life is extremely important. But also I think if you’re talking about this, as this is a life issue for many people, my life matters, too. Right? And methotrexate not only prolongs the lifespan of people with rheumatoid arthritis, it also augments the effectiveness of a biologic. So like I’ve always been on methotrexate plus a biologic because I have a history of making antibodies to the biologic. So it’s just really an essential part of treatment for rheumatoid arthritis. You know, I saw an article from 2019 from the Annals of Internal Medicine by Jeff Sparks, said that 50% of patients do well on methotrexate, monotherapy or methotrexate alone. That’s a huge amount of patients and to deny them this based on it’s not a medical decision. It’s really scary. I’ve seen people on social media who have been successfully treated with methotrexate now their doctors and pharmacists are refusing to give it to them and it feels unethical.
Zoe Rothblatt 14:33
I agree. It really does feel unethical and like you said, a patient goes through so much to find the right treatment and to be faced with another barrier is so challenging to say the least. So one thing we’ve been hearing a lot on social media is that a number of patients have had to go through I guess like an extra verification process to get their methotrexate. So it wasn’t completely denied but the pharmacists and doctors offices are being extra careful and you have to submit more clinical criteria to say this is the diagnosis code, my patient is in fact, on this medication. I’m wondering what advice do you have for patients that are in that situation where they need to communicate with their doctor? What are some of your best tips for opening that line of communication advocating to get your medication?
Cheryl Crow 15:18
I think communicating as early as possible is really important. So if you are worried that this might affect you, contact them now. It doesn’t have to be direct communication to your rheumatologist, it could also be to the rheumatology nurse or anyone else on their staff. You know, this is a lifelong condition. So in general, it’s really in your best interest to develop a good relationship with all of the people, the front desk, the rheumatology nurse. Also keep an eye out on the advocacy organizations and what statements they’re putting out like the American College of Rheumatology. They’re gathering stories currently from patients and providers. They’re trying to figure out where is the issue coming up. I know for some patients, it’s been the doctor who is fine with prescribing it, but when they go to the pharmacy, the pharmacist says no. For other patients, it’s actually at the level of the doctor. Like there was a woman on Twitter in Tennessee that said that their facility said, “We have been instructed to discontinue methotrexate in female patients of childbearing age.”
Zoe Rothblatt 16:15
Wow, that’s just such a powerful statement. There’s no reason just because of who you are, you’re being denied this medication.
Cheryl Crow 16:24
Exactly. And I know that there are some lawyers that are looking into this as a potential lawsuit for gender discrimination. I have been hearing from patients who have received their methotrexate. Some of them are like, “Well, I’m 74. So I got it. But I don’t know whether that’s because of my age,” or there was one patient in Houston, which is where, you know, Texas is where a lot of the denials are happening. But she said that her pharmacy, they saw this coming and they just had to document that she was on birth control. But again, not I should even say just how many people don’t want to take birth control and maybe it messes with their hormones. Unfortunately, I heard another case where a pediatric rheumatologist where their pharmacy told an eight year old patient that she had to take a pregnancy test before they would give her methotrexate.
Zoe Rothblatt 17:05
Wow. If you take injectable methotrexate, you take it once a week. And usually typically a supply is given for a month. So you can only imagine every single month you have to go through this and you’ll reprove your disability again, reprove that you’re taking whatever steps they’re deciding you have to take in order to get your medication. It’s exhausting. You know, something we always say is having chronic illness as a full time job. this like adding another internship to that job. It’s too much, you know.
Cheryl Crow 17:32
On top of what patients already are having to do to get there other medications, the biologics. I mean, we’ve been advocating for years to get step therapy and fail first practices to be decreased. It’s tiring, and most people don’t have the emotional and just logistical time and the medical expertise to understand even how to advocate and how to get started. So that’s why organizations like Global Healthy Living Foundation, you know, and other disease specific nonprofits can be a really great lifeline right now. So keeping an eye out also for like the disease specific nonprofits that are putting out statements and putting out resources is going to be really helpful as well.
Zoe Rothblatt 18:11
On that note, my last question for you, Cheryl, is why is it important to share your stories? You’ve been so active on social media trying to reshare other people’s stories and giving your own perspective. Talk to us about what that does in this scenario.
Cheryl Crow 18:25
It’s important to share stories because humans are storytellers. And so I think of it from multiple angles. I think it’s personally from my personality, it’s very cathartic to share my story. I know not everyone is like that. Some people are more shy or introverted. It’s stressful for them to share their stories. So I want to acknowledge that not everyone enjoys sharing, as much as I do, you know, Show and Tell was my favorite subject in school. So I’m like, I’ll share anything. For me, it brings purpose to my life, to share my story and to amplify other people’s stories. It’s also important for health care providers to hear the direct patient stories. And for patients to hear the direct provider stories, it’s important for us to all hear each other’s stories to understand each other better, because it’s interesting being both like a licensed health provider and I’m an occupational therapist, I’m not a doctor provider, but and a patient. I do see sometimes that there’s a little bit of a don’t shoot the messenger thing that happens sometimes, like there’s many times that the doctors or health providers would love to give you like the best care possible and they literally just can’t for reasons out of their control. So if we share our stories, we can understand each other better. And also problem solve. In this case, everyone sharing their stories really helped the larger organizations figure out what was going on. Where’s this happening? You know, is it Tennessee? Is it Texas? Is it Michigan? Why was somebody in Pennsylvania all of a sudden denied? You know, there’s, the more stories we have, the more information we can gather, I guess. For sure, just piecing together and then you know being able to say now that we have this information, we can educate and advocate so that people in those scenarios know what to do. And the people who aren’t in those scenarios can prepare and be equipped to deal with them if it comes up. Cheryl, thank you so much for joining us today. We appreciate your insights on this issue. And of course, we hope everyone gets access to their medication, but if not, we know we’re fighting together. Thank you so much. And thank you for what you’re doing to track this issue. I’ve been directing people your way to share their stories. So thank you.
Zoe Rothblatt 20:30
All right, Steven, that brings us to the close of our show. What did you learn about today?
Steven Newmark 20:35
Well, it was great listening to your interview with Cheryl. I really learned firsthand what patients are dealing with when we talk about the methotrexate issue. To hear Cheryl’s story and all that she’s doing to help advocate on behalf of herself and other patients is really inspiring.
Zoe Rothblatt 20:49
And I learned that we have a big win for IBD patients and hopefully more public restrooms in New York City.
Steven Newmark 20:56
We hope that you learned something too. We’d love to hear from you about what you’re up to these days. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 21:07
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 21:14
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 21:20
Well everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 21:36
I’m Steven Newmark. We’ll see you next time.
Narrator 21:41
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 4- Advocating for BIPOC and LGBTQIA+ Health Care
Diseases don’t discriminate; anyone can get one or suffer from a chronic illness. But they do disproportionately affect BIPOC and LGBTQIA+ communities. In this episode, Sarah Shaw, BIPOC Outreach Manager at Global Healthy Living Foundation, describes what it’s like being a Queer, Black woman living with chronic migraine, endometriosis, and anxiety and how health care providers must improve interaction with these communities.
“Maybe if there have been more representation showing that Queer people get migraine. Black, Indigenous, and People of Color get migraine. Men, Women, Trans, and Non-Binary folks get migraine. If that representation had been there, maybe they would have jumped to a migraine conclusion diagnosis first, instead of what I was pushed on, which was, ‘Oh, it’s just anxiety or stress,’ when I was seeking answers,” says Sarah.
S4, Ep 4- Advocating for BIPOC and LGBTQIA+ Health Care
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Sarah Shaw 00:08
Maybe if there have been more representation showing that queer people get migraine. Black, Indigenous, and People of Color get migraine. Men, women, trans, and non binary folks get migraine. If that representation had been there, maybe they would have jumped to a migraine conclusion diagnosis first instead of what I was pushed on, which was, “Oh, it’s just anxiety or stress,” when I was seeking answers.
Steven Newmark 00:30
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:40
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:45
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:58
Yes, we sure do. And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to our newest podcast which just launched called Thriving While Aching. It’s a series hosted by Laurie Ferguson, who’s a clinical psychologist and certified health coach, and it showcases the stories of older adults doing what they love while living in pain.
Steven Newmark 01:20
I can’t wait to take a listen.
Zoe Rothblatt 01:22
Yeah, Steven, you’re gonna love it. Okay, well let’s start with listener comment as we always do. Are you ready?
Steven Newmark 01:27
I am ready.
Zoe Rothblatt 01:29
This one came from Meghan P. who wrote, “Insightful and easy to listen to.”
Steven Newmark 01:34
Insightful we go for that. Easy listening, like elevator music.
Zoe Rothblatt 01:42
Facts. Okay, let’s jump into our news update. The first thing I wanted to talk about was the fifth shot for immunocompromised. Have you seen this?
Steven Newmark 01:52
Yeah. Cinco.
Zoe Rothblatt 01:53
Yes. So the CDC notes that people ages 12 and older who are moderately or severely immunocompromised should receive a total of five doses of an mRNA vaccine to stay up to date. So those five include the three primary series and two boosters.
Steven Newmark 02:08
So the general population, remember, is only recommended to have one booster at this time, although the two booster regimen can be given to those over age 50.
Zoe Rothblatt 02:16
For those of our listeners who got the one dose Johnson and Johnson and are wondering what this means for them, the CDC says that you should get a second dose of either mRNA vaccine and then two mRNA boosters for a total of four doses.
Steven Newmark 02:30
This one felt like the CDC did this somewhat quietly. I didn’t see a big announcement. I don’t know. Did you?
Zoe Rothblatt 02:36
No, and I’m glad you said that because it did feel quiet. And you know, I heard somebody in our community mention it and I looked it up and there was all this guidance on the website. And I was wondering why we didn’t get this big announcement and why there was no news coverage of it, or not big enough news coverage.
Steven Newmark 02:53
Strange. Well, we at GHLF will work hard to dig deep on the CDC’s websites and always find whatever information is out there.
Zoe Rothblatt 03:00
And I guess one big question is, will I keep needing boosters? I don’t know. Do you have thoughts on the answer to this? It seems like a lot to keep getting shots.
Steven Newmark 03:10
Yeah. For now we’re at the stage where if you’re immunocompromised, it’s two boosters. If you’re not, it’s one booster. But that may change when there’s an updated vaccine that is more durable or when a different type of technology exists for folks who are immunocompromised. Well, there was big health news. And then it does relate to immunocompromised, the Supreme Court overturned Roe versus Wade.
News Reporter 03:30
There is no longer a federal constitutional right to an abortion. Even though America was braced for the decision, it was nonetheless momentous.
Steven Newmark 03:40
Which means that it’s up to each state to determine individual laws when it comes to abortion.
Zoe Rothblatt 03:44
Thinking about this in terms of our community who live with chronic illness, I would say that the first thing to point out here is just talk to your doctor about your medications. There are certain medications used for inflammatory diseases that have a product label warning not to use them when planning to become pregnant or when you’re pregnant or breastfeeding. So I would say now more than ever, it’s really important to have those family planning conversations with your doctor just understanding the risks of certain medications.
Steven Newmark 04:12
We’re already hearing about an access issue in certain states that had what are called trigger laws that outlawed abortion in those states. The moment the Supreme Court made such a ruling, we’re starting to hear that particular medications that are used for treatments of inflammatory conditions, as well as treatments for abortion, are being withheld for autoimmune patients.
Zoe Rothblatt 04:33
An example of this is in Texas there’s a law, SB 4, that restricts the distribution of medication that can be used for abortions. So two medications that we know our community uses have been added to this category of abortion inducing drug in Texas law. So even if people in our community are using it to treat their chronic illness, since it also has this other use it’s approved for, it’s causing fear amongst pharmacists, people are gonna start being extra cautious. We’ve seen people tweeting out that they’re already getting denied and their prescriptions are being called into question. So it’s just really shocking to see the impact it’s having on our health already.
Steven Newmark 05:11
Absolutely. I’d say the big takeaway for anyone who is on methotrexate or any of these other similar therapeutics, and you live in one of these states that have outlawed abortion already to understand the new landscape, and it may be more difficult to obtain your prescription. It may take more time. Pharmacists and doctors are proceeding with more caution.
Zoe Rothblatt 05:32
You know, of course, we’ll keep an eye out as advocates on different policies that come up and ways we can advocate and raise our voice. Because, you know, of course, we believe everyone should have access to their medication that treats their condition at the right time, and you shouldn’t be delayed. And you shouldn’t have to go through this. And it’s really unfair, and just know that we’re doing our best here to try and help you.
Steven Newmark 05:53
Absolutely. This week, we have a special guest here with us, Sarah Shaw, who is part of our advocacy team here at GHLF. She’s our BIPOC Outreach Manager. Hi, Sarah. How are you today?
Sarah Shaw 06:03
Hey, hey, thanks, Steven and Zoe for having me back on the show. I’m really glad to be back here.
Zoe Rothblatt 06:08
Welcome, Sarah. Last time you came on The Health Advocates, we talked about your advocacy experience with Headache on the Hill. Today we’ll continue that discussion as it’s Migraine and Headache Awareness Month. And it’s also Pride Month. We wanted to have you on just to talk about why awareness and advocacy is so important and how different parts of your identity play into your chronic illness and treatment journey. What do these awareness months mean to you?
Sarah Shaw 06:32
It’s really cool that Pride Month, Migraine and Headache Awareness Month, and Juneteenth all fall in the same month. There is this meme going around, about when you’re Black and have migraine during Pride Month that you get elevated during this month. And I just think that it’s a great way to not only celebrate who you are, but also bring awareness to identities, to chronic diseases that are so important, not only that are huge part of my identity as a queer Black woman living with migraine, but to a lot of other people that might not be aware of it. It’s a way to build community, to make people feel less alone. It’s also time to celebrate who you are, and bring up serious issues facing our communities at the same time. You can help educate others inside and outside of the communities about what’s going on and why it’s so important to support us. And it’s also a chance for our allies to help out and support us as well. So I think all around there’s a lot of communicating and a lot of awareness going on this month and a lot of love to share.
Steven Newmark 07:27
How does your identity play into dealing with a chronic illness? And vice versa, how does having a chronic illness play into your identity as to who you are?
Sarah Shaw 07:36
Being a queer Black woman living with chronic migraine, endometriosis, and anxiety, it is a part of me and it’s inevitably going to come up when I go to the doctor’s office. Especially when I see a new doctor, whether that be if my insurance changes, or I need to find a new doctor if I have a new condition. Or if when a doctor that I’ve been seeing for a while leaves and what not a lot of people realize is that when that happens, you often have to come out every time you have a change in your doctor’s office. In the very beginning, it was very awkward to come out. And sometimes people are not as accepting in doctor’s offices, or they’re very confused, or they’ll use the wrong language. And for me, I’m a cisgendered, queer Black woman so I present as female, then my pronouns never get misused, but for our trans and non binary folks, that does end up happening to them. And I want to make sure that they are in a safe and accepting physician’s office and we want to make sure that people feel as safe as they can when they are at the doctor. So I think I can’t really have one without the other anymore. Migraine is part of me, my queer identity is a part of me and they interchange.
Zoe Rothblatt 08:43
I love what you said about feeling safe at the doctor’s office, you’re already so vulnerable when you feel sick, when you’re seeking a diagnosis and to have an extra layer of feeling uncomfortable on top of that is really challenging. And you mentioned some doctors using the wrong language. I’m wondering if you could share with us, what’s some positive language that has made you feel more comfortable in the doctor’s office?
Sarah Shaw 09:05
When I would go to my gynecologist office, they would often use the term woman and for me that was correct. But people with uteruses, like gender inclusive language like that. On the forms, sometimes it’ll say just female and male, no other option or are you single, married or other and it would be nice to have more inclusive language because sometimes people in our community, they might have multiple partners. And I think just making those changes, making sure that pronouns are used and just not assuming and making sure that dead names aren’t used when at the doctor’s office. This, again, does not apply to me. But it does apply to a lot of people within the LGBTQIA+ community to make sure that you’re being as affirming and inclusive. That your practice is as inclusive as it can be. And you’re always learning, you’re gonna make mistakes, but checking in and tapping into the community, we’re always willing to talk and help and I think that that’s just such a great way to make your space just better for patients all around. What do you think are some of the unique challenges that LGBT folks face when accessing migraine treatment and care? I think access to health care and treatment is still such a huge issue for folks in the LGBTQIA+ community. A lot of us don’t have access to insurance or are disabled or on Medicaid. And we need to make sure that they still have access to the same amazing doctors that people with commercial insurance have and treatments. And oftentimes, that is not the case. And people end up having to forego seeing a doctor, forgo getting treatment. And also, they have similar issues to insurance barriers. And sometimes we don’t have the time or energy or money to fight these cases. I have a lot of privilege as a cisgender queer woman, but I’m always fighting to make sure for a more inclusive workplace. And unfortunately, there is still homophobia that exists in the healthcare system, we just have to do better to ensure that we’re making sure every patient is getting the type of equitable care that they deserve.
Zoe Rothblatt 10:55
And I think it’s so important to listen to stories like yours and perspectives like yours, because you’re in the community talking to people and you’re hearing those stories about what people are encountering when they go in the doctor’s offices. And we really need to do a better job at calling that out. And like you’re saying, you can really change a simple piece of paper, you can alter a form and that can make a huge difference in someone’s day and life. So I just appreciate so much that you’re giving tangible examples of ways that we can fix things in our system.
Sarah Shaw 11:24
Yeah, if we all work together, I know that we can really make change.
Zoe Rothblatt 11:29
I want to talk about Talking Head Pain, another GHLF podcast, which you’ve been featured on. You shared about experience of navigating migraine care as a person in various marginalized communities. And I’d like to play a clip of you in an episode of Talking Head Pain where you shared your experiences of navigating migraine care as a person in various marginalized communities.
Sarah Shaw 11:49
“You hear the word migraine thrown around a lot. It’s sometimes very stigmatized. And when it’s portrayed, it’s all middle aged white women. But I didn’t recognize this was something that Black people could get. Because I had never seen, until much recently, Black people portrayed in migraine commercials, even for prescription medication in social media, in doctors offices.”
Zoe Rothblatt 12:16
Sarah, what are some of these stigmas that you’re talking about that migraine patients face? And how did that play into your journey?
Sarah Shaw 12:23
For me as a queer Black woman just starting out on my migraine journey when I didn’t know what I was experiencing was a migraine attack, what you see when you think of a migraine, it’s shown as a cisgendered, straight, white, middle aged woman. When that is all that surrounds you, you start to think that that’s not something that can affect you. I feel like my migraine diagnosis was really delayed due to the fact that not only myself but my doctors also didn’t think that migraine was something that was affecting me. Maybe if there had been more representation showing that queer people get migraine. Black, Indigenous, and People of Color get migraine. Men, women, trans and non binary folks get migraine. I feel like if that representation had been there and had been in the forefront, then maybe they would have jumped to a migraine conclusion diagnosis first, instead of what I was pushed on, which was, “Oh, it’s just anxiety or stress,” when I was seeking answers. And I think that that’s something that affects a lot of people within both of the communities that I’m a part of; BIPOC and the queer community.
Zoe Rothblatt 13:23
That brings us back to what we’re talking about in the beginning, how important these awareness months are, because it really does give a big name and a big face just to showcase that more than one type of person gets these diseases. Diseases don’t discriminate.
Sarah Shaw 13:36
They definitely don’t. But they do disproportionately affect BIPOC communities and LGBTQIA+ communities.
Steven Newmark 13:42
Sarah, what advice do you have for others on speaking up and advocating as you have?
Sarah Shaw 13:47
I think the first thing is self care is so important. And you have to remember it’s a marathon, not a sprint with advocating. Make sure that you take breaks, to take care of yourself. I know that I’ve been taking more part in our Wellness, Evolution podcast “Breathing Breaks.” Those have been so helpful for me throughout the day, because sometimes you just need to breathe. And remember that when you first start out, or even if you’ve been doing this for one year, three months or five years, remember that your story does matter. And it may not seem at the moment that like people are listening to you. But I guarantee you, if you yell hard enough into the void like I did, like I started out my advocacy just yelling out into the void on Twitter about what was going on with me, how I was feeling and the void, I think this joke, the void shouted back. They found me, they yell back at me in a good way. And they supported me. The community is there and sometimes when the community is really magical and they’ve got your back and you can really look to them to be mentors and also help pave your own way in advocacy as well and lead you hopefully to the Global Health Living Foundation.
Zoe Rothblatt 14:46
I love that, “The void shouted back.” That’s such a good quote. And I’m so glad they shouted back and brought you here on with us and we’ll keep shouting with you. Well Sarah, thank you so much for joining us today. We appreciate your candidness and just sharing your story with us and our listeners. Thank you.
Sarah Shaw 15:03
Thank you both.
Steven Newmark 15:04
Yes, absolutely.
Zoe Rothblatt 15:05
Okay, Steven, that brings us to the close of our show. What did you learn about today?
Steven Newmark 15:09
I learned what folks like Sarah in the LGBTQ community face when accessing treatment and care and the unique barriers and difficulties they go through.
Zoe Rothblatt 15:18
And I learned from Sarah about ways that we can help be more inclusive, like updating the forms at doctor’s offices to just take into account all identities.
Steven Newmark 15:29
Well, we hope that you learned something too. We’d love to hear from you about your stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 15:39
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 15:45
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:50
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 16:08
I’m Steven Newmark. We’ll see you next time.
Narrator 16:13
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 3- When Is A Cold, Just A Cold?
Have you noticed your symptoms for a common cold during COVID are worse than normal? You’re not alone. Researchers believe our acquired immunity is lower, which can be particularly nerve wracking for those in the immunocompromised community.
“The weird thing about the pandemic during the lockdown phase is I didn’t get sick,” says Steven Newmark, Director of Policy at Global Healthy Living Foundation. “And I was so used to, my whole life, going through a winter and always having a tickle in my throat or sneezing or what have you. And to have zero illness was just a very strange experience.”
S4, Ep 3- When Is A Cold, Just A Cold?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:06
The weird thing about the pandemic during the lockdown phase is I didn’t get sick. And I was so used to, my whole life, going through a winter and always having a tickle in my throat or sneezing or what have you. And to have zero illness was just a very strange experience. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:34
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:38
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:53
Yes, and as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Wellness Evolution. That’s a podcast that brings together diverse communities to discuss topics like mindfulness, chronic illness, and mental health along with some breathing exercises. So let’s start as we always do with a listener comment. Are you ready, Steven?
Steven Newmark 01:16
I am ready.
Zoe Rothblatt 01:17
This one came from EGA95, who wrote, “I just listened to the conference episode and really appreciate the host sharing their highlights in an easy to understand format.”
Steven Newmark 01:27
Thank you, EGA95. That means a lot. Especially going to conferences, it’s not so easy to travel in this day and age with everything going on. So it’s nice to be able to report back and hear that folks like listening to it.
Zoe Rothblatt 01:38
Alright, shall we hop into our news updates?
Steven Newmark 01:40
Absolutely.
Zoe Rothblatt 01:42
The first one is that the US Centers for Disease Control and Prevention, the CDC, endorses Pfizer and Moderna vaccines for children.
Steven Newmark 01:51
That was me clapping.
Zoe Rothblatt 01:52
Big round of applause.
Steven Newmark 01:54
So now children as young as six months are eligible to get a COVID vaccine.
Zoe Rothblatt 01:58
This is good timing. It’s the start of busy summer, a lot of people are going on vacation and of course children have summer camps. So it’s nice to get in this protection before all that hectic summer plans.
Steven Newmark 02:09
The CDC is not favoring one shot over the other, either vaccine is safe and effective, as we all know. And for parents who wonder don’t kids have strong immunity? Aren’t their bodies better protected against it? The truth is, it’s always good to arm up. If you’re going into battle, you want to have as much armor as possible, right? So get vaccinated.
Zoe Rothblatt 02:26
And I saw that the CDC did emphasize that children who have already had the virus should still get vaccinated to one, prevent against reinfection. We know that happens and you will also protect your family members and community members. I’m sure there’s people in our community have children around them that are really excited for children to get the vaccine and be able to comfortably hang out.
Steven Newmark 02:47
Yes, so 49 of the states enabled pediatricians to pre-order these vaccines for their children. So the 50th state was Florida
News Reporter 02:55
As COVID vaccine distribution begins for the nation’s youngest age group, the debate over whether or not kids should be receiving those shots continues to rage here in the Sunshine State.
Steven Newmark 03:05
In Florida, Governor Ron DeSantis was the only Governor not to allow doctors, pediatricians to pre-order vaccines so that they would be ready to go once full approval came.
News Interviewee 03:16
I had parents contacting or reaching out to me all of last week saying, “Am I going to have to go to Georgia?” That is the type of confusion that he created last week.
Zoe Rothblatt 03:23
Okay, so what does that mean now?
Steven Newmark 03:25
Now that approval has come, doctors are able to place their orders. However, they’re doing so directly through the federal government and not with the assistance of the state of Florida, which makes it a little bit of a harder hurdle. number one. And number two, since they did not pre-order, it means that they won’t be ready to go at the same time as the other 49 states.
Zoe Rothblatt 03:44
It’s just unfortunate to have a slow rollout, especially when you think healthcare workers got the first shots December 2020. Now it’s June 2022. We should have the rollout pretty seamless by now. But I’m glad that the White House is stepping in.
Steven Newmark 03:58
Look, we don’t want to talk politics too much. So I would say there was a statement by Governor DeSantis where he said, “I would say we are affirmatively against the COVID vaccine for young kids. These are the people have zero risk of getting anything.”
Gov. Ron DeSantis 04:10
We’re following the data. You look at these European countries, a lot of them don’t even allow Moderna for under age 30, or they recommend against it.
Steven Newmark 04:17
For a leader to come out and say that when it’s clearly not true, it’s unfortunate and it cuts into the confidence that we’re trying to build in these vaccines.
Zoe Rothblatt 04:28
Okay, I have some good news. The Senate passed major benefits expansion for veterans. So this bill would offer new health care and tax free disability benefits to as many as 3.5 million veterans
Steven Newmark 04:42
Under this legislation, the Department of Veterans Affairs would consider a veteran with any of 23 conditions ranging from brain cancer to hypertension, who was deployed to a combat zone during the wars of Iraq or Afghanistan to be automatically eligible for care by the VA.
Zoe Rothblatt 04:57
This is based on the presumption that exposure to toxic chemicals in the warzone caused the ailments. Many veterans are denied care and disability benefits that they deserve because it’s hard to prove this exposure. So the way that the legislation is written, it would automatically qualify and get this group the health care that they need.
Steven Newmark 05:16
We know how hard it is to prove disability. We’ve heard from people in our community about the grueling, long process of applying for disability and how you have to reapply constantly. It’s exhausting to continue advocating for yourself. So hopefully this bill expands access.
Zoe Rothblatt 05:29
Yeah, I would just reiterate, it is so exhausting to keep advocating when you’re just trying to take care of yourself and stay healthy. And then on top of it, you have to do all this extra work. It’s really a lot. The House is expected to pass the bill and then send it to President Biden to sign into law.
Steven Newmark 05:44
Well, for today’s episode, we wanted to talk about something that perhaps you have experienced or you’ve heard about others experiencing. You may have contracted a cold or a flu, and it feels a little different than it did pre-pandemic.
Zoe Rothblatt 05:56
For sure. Familiar viruses are definitely acting in unfamiliar ways. So let’s walk through it. What’s familiar and what’s not familiar?
Steven Newmark 06:05
Sure.
Zoe Rothblatt 06:06
So familiar; respiratory viruses and the flu typically pop up in the winter. Rhinovirus, the cause of the common cold, rarely sends people to the hospital, you know, you’re just sick at home. What’s unfamiliar is hospitals are seeing people come in for respiratory viruses, especially children. Some even had two viruses a co-infection. The flu, which seemed to disappear during our lockdown, came back this year in December 2021 and disappeared in January once the Omicron variant. COVID was spreading, now the flu seems to be coming back. Common colds are a little more virulent, seemed to be a little worse. I don’t know. Does this ring true for you, Steven? Did you get sick at all when we were hunkered down stay at home?
Steven Newmark 06:49
The weird thing about the pandemic during the lockdown phases, I didn’t get sick. And I was so used to my whole life going through a winter and always having a tickle in my throat or sneezing or what have you. And to have zero illness was just a very strange experience. I even asked one of our colleagues who’s a doctor, I said, “Oh, by the way, are our own immune systems going to be okay, when this whole thing is over? Are they going to forget how to fight viruses?” And he said, “I’m not really sure that, that’s something to think about. But let’s just get through this pandemic, first and foremost,” but yeah, absolutely. So I was definitely the opposite in that I didn’t get sick. I have two children. It’s weird seeing them not sick during the pandemic, because kids are always sick. They always have runny noses. So that was kind of strange.
Zoe Rothblatt 07:29
I had the same experience. I didn’t get sick when we were really hunkered down. And actually, a few weeks ago, I got extremely sick. And I was like, wow, I haven’t been this sick in two years. It felt so unfamiliar, uncomfortable, to say the least. It took my body for a shock. I’m glad that this is becoming a new story and people are looking into it. It’s like you mentioned researchers are looking at our behavioral changes, like the stay at home orders, the masking, social distancing, and whether those are responsible for these viral shifts.
Steven Newmark 08:00
I can’t help but wonder and I’m not a doctor, again, the tagline for a show, “I’m not an expert, but,” when I did get a cold recently, it felt worse than it normally did. And I couldn’t help but wonder if some of that was mental or psychosomatic in the sense that it’s been so long since I’ve been sick. Did I forget what it’s like to have a cold? Or did I forget, “Oh, it’s not so bad. I can deal with it.”
Zoe Rothblatt 08:21
It’s like that moment that your nose clears up and you understand how magical it is to breathe. Do you know what I mean like, and I took this for granted the whole time like this is so amazing to be able to breathe,
Steven Newmark 08:33
Right. Look, it’s definitely true. We’re hearing from researchers that our acquired immunity is lower for those of us who stayed in and did not get sick. And that can be particularly nerve wracking for those in the immunocompromised community.
Zoe Rothblatt 08:45
Yeah. And what you mean by acquired immunity, it’s like because we limited our exposure to COVID, we also limited our exposure to other viruses. So if you don’t get exposure to certain viruses and a time period passed is, you know, you may not be able to protect yourself as well because your immune system has lost that memory. And this leads to this out of season surges.
Steven Newmark 09:06
That means keeping an eye out on the diagnostic process for viruses that may not usually present at this time of year, like the flu, for example, which is still out there. Even though it’s June. Keeping your vaccines on hand. Usually the flu campaign is in the fall, but perhaps going forward, we may start to rethink that.
Zoe Rothblatt 09:23
Given all this, what is there to do? I would say it falls into a few buckets. The first one is stay calm. It’s viruses we know, it’s not like the novel Coronavirus. So while the patterns are different, we do know how to treat them and we have vaccines.
Steven Newmark 09:38
You mentioned vaccines. So focus on prevention, get your flu shot, get your COVID shots, make sure you’re updated on all recommended vaccines for your age.
Zoe Rothblatt 09:45
I would also say talk to your doctor just about your risk about how to stay safe. When things are swarming I usually talk to my doctor about what I should do and who I should call and what I should do about my medications and it’s comforting to get advice from a medical professional.
Steven Newmark 10:02
And also keep your mask handy. I was also very glib about this during the lockdown phase, I said, “I don’t really want to get the flu in the future. I’m going to wear this mask all the time in the winter when I’m out and about because why not, right?” Now that things are a little different, I’m still a mask wearer so I’m not at the phase where I’ve taken the mask off. But I would say I definitely when I had my cold, I was really making sure I was wearing the mask because I didn’t want to spread it to others. I felt that was sort of my duty to do that at least.
Zoe Rothblatt 10:29
Yeah, I wish everybody felt like that.
Steven Newmark 10:31
Yeah, yeah.
Zoe Rothblatt 10:32
Overall, just be patient. Experts anticipate that the viruses will fall back into patterns once the population immunity increases, and that will decrease what’s known as the force of infection from these viruses. That brings us to the close of our show. Steven, what did you learn today?
Steven Newmark 10:54
I learned what we have experienced anecdotally, you and I in terms of colds and flus acting strange and being in our environment, is happening around the country and indeed around the world. So that makes me feel a bit better always when something is normalized.
Zoe Rothblatt 11:08
So true. And I learned about some of the hurdles with getting the rollout of the kids vaccine.
Steven Newmark 11:15
Yeah, so we hope that you learned something too. We’d love to hear from you about your stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 11:25
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 11:32
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 11:37
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts, and definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 11:55
I’m Steven Newmark. We’ll see you next time.
Narrator 12:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 2 – New Test: Are You Immune to COVID?
You’re vaccinated, boosted, and perhaps even had COVID. But how much protection do you currently have from the virus or one of its variants? An international group of researchers have developed a new blood test to help assess a person’s COVID immunity. While the test is already used in Europe, the FDA is in the process of reviewing the technology.
“If there was an at-home version…I would take it every week. The idea of just knowing and I would feel safe,” says Steven Newmark, Director of Policy at Global Healthy Living Foundation.
S4, Ep 2 - New Test: Are You Immune to COVID?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
I would love this test.
Steven Newmark 00:10
Me too.
Zoe Rothblatt 00:10
I hope to see it soon. That would be cool.
Steven Newmark 00:12
If there was an at home version, I would take it every day. Maybe not every day, I would take it every week. The idea of just knowing and I would feel safe. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:32
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:36
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:50
Yes, and as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Talking Head Pain hosted by Joe Coe, who recently attended a migraine conference and gave updates throughout the conference from experts. Definitely check it out to stay up to date on all things migraine.
Steven Newmark 01:08
I think we have some news about our podcast, right, Zoe?
Zoe Rothblatt 01:11
We sure do. 10,000 listeners!
Steven Newmark 01:14
Excellent, excellent. 10,000. That’s a great number. Please continue to tell your friends where to find us. And thank you. Thank you.
Zoe Rothblatt 01:22
And definitely keep leaving comments. We love to read them. So let’s start with listener comment. This one is from Alex M. who wrote, “Great podcasts and engaging hosts.”
Steven Newmark 01:31
Thank you, Alex M. Maybe that is why we have 10,000 listens. So thank you, Alex.
Zoe Rothblatt 01:36
Yeah, we’ll keep boosting our ego. Well, we do have some news updates this week for our community. The biggest news I saw was that it’s a big week for children’s COVID vaccines. Pfizer and Moderna are both asking the FDA to authorize doses of their vaccine for kids ages five or six months to four or five years, which is really exciting.
Steven Newmark 01:57
As a reminder, children under five are the only group in the United States who remain ineligible to get vaccinated.
Zoe Rothblatt 02:02
So Pfizer’s vaccine is a three dose vaccine and Moderna’s is a two dose. FDA scientists released their analysis of both vaccines saying the shots appear to be safe and effective in young children. So you know, there’s no reason to think this wouldn’t go through.
Steven Newmark 02:18
Safe and effective. Those are the two words. The issue of course is getting this group vaccinated could be the most challenging part to come. Data from the Kaiser Family Foundation shows that while 18% of parents with kids under five are eager to get them a shot, 27% of parents said they will definitely not get their child vaccinated. In addition, more than half of parents said they do not have enough information about efficacy and safety.
Zoe Rothblatt 02:40
I get it. We saw with the older children age 5-11, their vaccines been available since around November 2021. And I saw for the Pfizer vaccine that only 36% of that population have received one dose and only 29% has been fully vaccinated. So it doesn’t totally surprise me that it would be challenging to vaccinate the even younger.
Steven Newmark 03:02
Right.
Zoe Rothblatt 03:03
Also just thinking about the timeframe that we’re in, Summer is approaching. And I know school is a big reason to get vaccinated. Maybe in a few months, when kids go back to school in the fall, we’ll see higher vaccination rates.
Steven Newmark 03:16
Hopefully that’s correct. We’ll see higher vaccination rates in the fall. And also look, once the vaccines get approved, at least it’s out there. Thankfully, for healthy children, the COVID pandemic was very different. It has mercifully spared the youngest.
Zoe Rothblatt 03:30
And then in other COVID news, I saw that Massachusetts is distributing another 2 million free COVID testing kits. And I just thought that was pretty cool. You know, the US government has been giving free ones. But here in New York, I haven’t seen any large scale distribution of free COVID tests. So I thought this was a fun piece of news.
Steven Newmark 03:49
I also got my third round of free tests from the US government. So I feel like I’m almost becoming a hoarder having all the test kits. Look, they’re good to have. I’m having a very mini family gathering this week. So that’s what they’re there for. So we’ll be using. Other quick news, the US lifted COVID testing requirements for international travel that is returning to the United States.
Zoe Rothblatt 04:14
This was pretty big news. You know, of course, the officials said that the CDC will do a reassessment of the rule in 90 days and then on an ongoing basis. Of course, if a new variant emerges, the CDC could reinstate it. So it isn’t the be all and end all. But for now, I guess like a little intimidating.
Steven Newmark 04:32
I think this one is tricky. I think the perfect rule if you could is so difficult to design. It’s got to be something like if you’re traveling in a certain jurisdiction where cases are above a certain threshold, the CDC will ask you to produce a test or something of that nature. Just from personal experience, I recently traveled internationally. And I had to come back and get the test and my mindset was, but I was only out of the country for a few days and I went to a place where the rates are actually lower than the United States, it doesn’t make any sense. I could have flown to anywhere in the United States and not have to take this test. And I found it to be quite a hassle as an American citizen trying to return home. That being said, when I got on that plane, it kind of hit me like, wow, this is a really safe place to be because everyone in here has been tested within the last 24 hours tested negative.
Zoe Rothblatt 05:20
I know that’s such a cool thought. That situation almost could be safer than going out to dinner, you know?
Steven Newmark 05:25
Yeah, absolutely. I think it’s just so difficult and complicated to design the perfect public health rule in this situation. So they’re going for broke, we’ll see what happens.
Zoe Rothblatt 05:35
You know, of course, our community always feel safer knowing people have tested negative that they’re going to be around and get more nervous if safety measures are dropped. And you know, that actually leads us into our next news, which is we have our own GHLF Quick Poll results from our Patient Support Program about summer plans and what activities people who are immunocompromised or live with underlying conditions feel comfortable doing this summer.
Steven Newmark 05:59
I love these quick polls, by the way, so give it to me.
Zoe Rothblatt 06:01
Shockingly, people are more willing to participate in activities compared to last summer, but only 30% said they feel more comfortable doing it. So you know, it kind of read, “Yes, things are opening up, and we’ll do them. But we really don’t feel comfortable.” And in the free response section, it became so clear that this is because there’s a drop in COVID safety precautions generally. So while things are open, there’s no more masks, there’s no more distancing, restaurants are operating at full capacity. So it does make them nervous.
Steven Newmark 06:31
That makes sense.
Zoe Rothblatt 06:32
Some of the most popular activities people plan to do are attend to outdoor gatherings, dine outdoors at a restaurant, and travel out of state. I definitely plan on doing all of these. So the poll results ring true to my reality. And like people in our poll, we’ll be paying close attention to case rates in the area and adjust plans, given the numbers.
Steven Newmark 06:52
I also plan on doing all of those things. I’m looking forward to it. So for today’s episode, we have a question. Have you ever wondered how much protection you have from COVID? You’ve gotten vaccinated, you’ve gotten boosted, perhaps you even had COVID. But how much protection do you currently have from COVID? That is an important question.
Zoe Rothblatt 07:15
To answer tha,t literally every day. I feel like I’m always wondering.
Steven Newmark 07:20
Well, people have tested antibody levels with their doctors. I never did that. Zoe, have you ever done that with a doctor?
Zoe Rothblatt 07:26
I actually did. We did it after the first two shots I tested and then after the third, and we did see a jump in antibodies, and then we haven’t really tested since. But obviously it’s not the full picture. You know, it can give an indication if you’ve had a certain level vaccine response. But there’s other part of your immune response that plays into this COVID protection aside from just antibody levels. And part of that is these T cells.
Steven Newmark 07:50
T cells are the white blood cells that work alongside a virus fighting antibodies to mount an immune response. An international group of researchers recently developed a new tool to help assess COVID immunity. And it’s a blood test that can measure T cells.
Zoe Rothblatt 08:04
This isn’t totally new. Last year, the US Food and Drug Administration granted Emergency Use Authorization to another T cell test, it just tends to be a little more labor intensive and time intensive. This new test that you’re talking about simplifies it just by using technology that’s widely accessible and can turn around the tests in less than 24 hours. This sounds like an overnight strep test type thing.
Steven Newmark 08:27
Right, and I should mention that this is already in use in Europe, and the FDA is in the process of reviewing the technology. So it’s not available here just yet. But knock on wood, it would be a fantastic tool to have in our arsenal.
Zoe Rothblatt 08:38
As we always do, what does this mean for our community, who live with underlying conditions and take immunosuppressive medications? How could this test like help us?
Steven Newmark 08:40
First, some immunocompromised people do not produce antibodies, even after a few vaccine doses, but they may have a T cell response. And this would help fill in that knowledge if these patients do have protections.
Zoe Rothblatt 08:57
It could also help to find how long protection lasts and how often boosters are needed. So for someone like me that knows I have a certain level of protection, I got my fourth shot at the end of January. Now we’re towards the end of June. And it would be neat to know where am I at, when’s the next time I need a booster and this test could help be a little more predictive in that and have that precision medicine is so cool.
Steven Newmark 09:22
Totally, folks who are immunocompromised, hopefully knock on wood have had the fourth shot or at least are heavily considering getting the fourth shot. We’ve spoken about this in terms of timing. When you get the fourth shot? We know for better or worse that the efficacy of the vaccines wane over time. So there’s this thought you want to have maximum protection before a certain event. If for example, you’re going to a wedding, you potentially want to time a vaccine related to that. However, if you have this tool, you’ll also be able to know whether you’re at full protection. If you’ve already had your fourth shot, you can test yourself and if the T cell response doesn’t look good, you may consider not going and conversely if the T cell response does look positive then you might go and feel a lot more comfortable about it, which is a good thing.
Zoe Rothblatt 10:03
It can just clue you into making that assessment and feeling more comfortable, relieving some of that stress, understanding how careful do I have to be? Or maybe I can be a little less careful this time and just probably enjoying the moment a bit more if you’re not so stressed about COVID.
Steven Newmark 10:20
Perhaps there would be less trepidation if you knew that your level of protection was very high.
Zoe Rothblatt 10:24
For sure, for me, I would love this test.
Steven Newmark 10:26
Me too.
Zoe Rothblatt 10:27
I hope to see it soon. That would be cool.
Steven Newmark 10:29
If there was an at home version, I would take it every day. Maybe not every day, I would take it every week, depending on the cost and everything. But I really would, the idea of just knowing and I would feel safe. And conversely, the opposite. If I knew the opposite was true, I would say, “Okay, N95 everywhere, no clowning around.”
Zoe Rothblatt 10:45
I think it would be exceptionally helpful as new variants emerge. And in that pattern where we hunker down a bit more and get really nervous. I think that having a test like this would be really good during those time periods.
Steven Newmark 10:56
Absolutely.
Zoe Rothblatt 10:56
But of course, I guess you just have to remember that experts are still trying to find out what the right level of protection is that makes a person unlikely to get sick. So it isn’t necessarily a yes or no answer, like, “Aha, you have the COVID protection,” it’s just sort of more data to calculate your risk. Because we don’t exactly know what is the right level of where you should be at. We have a hunch of what’s a good response, what’s a not so great response, but it’s not like you aced the test type thing. Well, Steven, that brings us to the close of our show, where we talk about our learnings for the day. So what did you learn today?
Steven Newmark 11:31
Well, I learned from you about GHLF’s quick poll and learning there’s still a high level of trepidation about certain activities. Hopefully that will start to dissipate, hopefully cases will start to go down, and some of the trepidation will start to dissipate.
Zoe Rothblatt 11:45
And from you, you got me thinking about how to design a good policy when we were talking about the lift of the testing requirement for international travel. And, you know, there’s a lot of thought that goes into it. And it’s sometimes not as easy to design the perfect policy versus just making a general rule.
Steven Newmark 12:01
Right. Well, we hope that you learn something too. We’d love to hear from you about what it is you’re dealing with as we enter this summer, what activities you may be planning for. Send your email to [email protected], or better yet, include a short video or audio clip.
Zoe Rothblatt 12:18
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 12:24
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 12:29
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 12:47
I’m Steven Newmark. We’ll see you next time.
Narrator 12:52
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 1- Guess What We Learned at a Medical Conference?
The Health Advocates share several takeaways from attending a medical conference on rheumatology. One was a “bombshell finding” that chronic pain is now identified as its own disease. Another is that people’s level of anger and social isolation have declined after COVID vaccines became widely available.
“It was really powerful to come to this conference and realize that there’s an abundance of research happening on chronic illness and COVID,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at Global Healthy Living Foundation. “And we really aren’t being left behind. People are studying and are caring.”
S4, Ep 1- Guess What We Learned at a Medical Conference?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
It was really powerful to come to this conference and realize that there’s an abundance of research happening on chronic illness and COVID. And we really aren’t being left behind. People are studying and are caring.
Steven Newmark 00:23
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:33
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:37
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to make sure that everyone takes listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:51
We sure do, and you can check them all out at ghlf.org/listen. This week, Steven, we’ll give a shout out to your other podcast called Gut Culture.
Steven Newmark 01:01
Great. Our latest episode features the IBDMoms and why building a community is so important for spreading awareness and information in the chronically ill community.
Zoe Rothblatt 01:10
So let’s start with a listener comment. Are you ready?
Steven Newmark 01:12
I am ready.
Zoe Rothblatt 01:13
This one came from Danny B., who wrote, “I feel so judged by a lot of the spaces I’m in. This podcast helps me feel seen.”
Steven Newmark 01:20
You know, this is the start of our fourth season. This season, we really want to dedicate ourselves even more so to our patients, because it’s our patients and our listeners who really make this worthwhile.
Zoe Rothblatt 01:30
I know, it’s been so amazing to see the growth of this show and see the comments coming in from people and we’re just so grateful to all of you.
Steven Newmark 01:38
And Macintosh for that matter.
Zoe Rothblatt 01:40
He’s almost a year old but is as puppy as ever. So pardon the interruption. Season Four, we’re more motivated than ever and just ready to jump in. So should we start with our news update?
Steven Newmark 01:53
Absolutely. Let’s do it.
Zoe Rothblatt 01:55
In big news on the Novavax vaccine, experts who advise the US Food and Drug Administration, the FDA, voted to recommend the agency to issue an Emergency Use Authorization for the vaccine.
Steven Newmark 02:07
It was a 21 to 0, with one abstention.
Zoe Rothblatt 02:11
I think it’s important to note that vote because you know, it just shows how far we’ve come in looking at these vaccines and recommending them. The fact that the overwhelming majority said, “It’s good to go, let’s get it out there,” was really impressive to me.
Steven Newmark 02:26
The big thing with the Novavax vaccine, it’s now our fourth vaccine in the United States. It’s not mRNA technology. That is, it’s old school technology, if you will. There is a very small slice of the population that was wary of the mRNA technology. There was also a small slice of the population that was unable for medical reasons to take an mRNA vaccine. So if this helps get a few more folks vaccinated in the United States, that’s a good thing.
Zoe Rothblatt 02:51
Yeah. And just bringing it back to our community who lives with chronic disease, we often rely on the people around us to be vaccinated. So if this gets more people vaccinated, that’s a huge win for our community. So Steven, you recently traveled outside the country. First big trip, I guess, since COVID. And what was it like, in the context of COVID, traveling?
Steven Newmark 03:15
Yeah, was my first big trip. I’m very grateful. I got to attend, on behalf of GHLF, a medical conference on rheumatology. I had COVID a few months ago, so I knew that I felt personally safe because I knew I was in that zone of heightened protection, if you will. And with that, I was able to have less anxiety and enjoy myself a lot more while I was at the conference itself.
Zoe Rothblatt 03:35
And for people like me, who are still a little bit uncomfortable with travel, I attended virtually, and it’s really nice that the conferences had that hybrid option.
Steven Newmark 03:44
Yeah, we attend these medical conferences to, number one, give the patient perspective. We provide some of our research learnings, but we’re also there to make sure that the patient’s voice is heard. It’s one thing for doctors to speak to other doctors about how to deal with rheumatism. But it’s another thing to hear directly from patients and patient groups like ours.
Zoe Rothblatt 04:03
100%, it’s so important. And I did notice more conversations this year than in the past about including the patient voice.
Steven Newmark 04:10
Yes.
Zoe Rothblatt 04:10
And I would say the other part of it is just, you know, we’re doing it right now but we also did it on Twitter throughout the conference is putting the information out in an easy format that people can read up on and you know, get more informed on their health, ultimately have better conversations with their doctor, and advocate for themselves. You know, we’re The Health Advocates, how do you best advocate? With information. And we’re there to grab the most interesting pieces of information and helpful things through the lens of patients and spread it out.
Steven Newmark 04:38
There was a lot of discussion about anxiety and depression for patients, long COVID and its implications for autoimmune patients.
Zoe Rothblatt 04:44
So that was a highlight for me, the COVID. That felt, you know, the most newsworthy. Some of the studies even felt a little bit outdated on vaccines, because I’m like, you know, these were conducted a year ago and now we’re here and it’s a little bit different, but there was a lot on long COVID. There was a lecture on what is the rheumatologist role in treating COVID, long COVID in rheumatic disease patients. And for me, I guess, we often talk about how we feel left behind and the news isn’t highlighting. So it was really powerful to come to this conference and realize that there’s an abundance of research happening on chronic illness and COVID. And while it may not be making headlines, we really aren’t being left behind when you take a look at it and people are studying and are caring. And that was really important to me.
Steven Newmark 05:29
Outside of COVID, I would say the number one takeaway for me that I thought was somewhat of a bombshell, if you will, or as much of a bombshell as you can get from a medical conference, there was discussion of chronic pain being identified as a disease on its own, which would really be groundbreaking. So I thought that was fascinating.
Zoe Rothblatt 05:45
Yeah, they talked about how it’s a continuum and there’s different types of chronic pain, and we can’t just brush it aside, it really is legitimate. I think this conference overall helped me and patients feel seen, it felt like the patient voice was really coming in. There was a lot of sections on the importance of involving more patients in research. At the end of the day, the patient experience is really what matters and what you’re feeling. And you’re really a part of your care team. And I think that when we talk about how you advocate, it’s also getting involved in research. That’s part of being an advocate is paving the way for future patients to have better care, because you’re lending your experience.
Steven Newmark 06:26
That’s a great way of putting it. You’re advocating on behalf of yourself, other patients, but probably most prominently future patients, to have ultimately a better experience and a better life trajectory. And that’s sometimes difficult to wrap your head around.
Zoe Rothblatt 06:35
Of course, they had sections that were very sciency and focus on actual clinical learnings in disease. But I felt like it was a very well rounded discussion in the fact that sexual health was addressed, fatigue was addressed, diet and exercise was addressed, the role of your gut and inflammation tying in other conditions and the overlap there. So I felt like the researchers and doctors and these groups around the world are paying attention to the full lifestyle and experience of patients.
Steven Newmark 07:07
And we as an organization, as folks know, we do a lot of research. And we’re grateful for the research that we’re able to do. And we presented several of our research projects, and one of them that I had an opportunity to see from our colleague, Kelly Gavigan, was to determine whether patient recorded scores for mental, social, and physical health, how it fluctuated during the COVID-19 pandemic for people living with autoimmune diseases. And the takeaway was that the scores for anger and social isolation, they worsened over the last eight months of 2021. That essentially corresponded to the pandemic, but scores for anger and social isolation started to decline and got better after the vaccines became widely available in the United States. That was good to hear, I guess.
Zoe Rothblatt 07:50
Yeah, that feels like it rings true for me. It’s always nice when you have the data to support your personal experience. And I think that was a huge highlight of this conference.
Steven Newmark 07:59
Yeah. And it’s very important for the medical providers, at this conference and beyond, to hear the mental health plight that patients go through, or have been through and continue to go through. Because you can’t just focus on a patient’s physical health, you really have to take a patient in the totality. So it’s important for us to present these findings, which is great.
Zoe Rothblatt 08:19
100%. Mental health and physical health are equally as important. You can’t prioritize one over the other. They’re both there. And I liked that each year, we’re researching more and understanding that more because it really does tie into each other and one impacts the other tremendously. If you want to learn more about this, definitely head to the CreakyJoints Twitter, or creakyjoints.org. And you could read more about the studies that our organization did.
Steven Newmark 08:45
Absolutely.
Zoe Rothblatt 08:46
So Steven, there was a lot of learnings today, but I guess, share one.
Steven Newmark 08:51
I liked what our commenter wrote, Danny B., who wrote about being judged, feeling judged by some many spaces, and it is a reminder that it is difficult at times to go through life with a chronic illness. But it is also important to have that community that we have helped to build here at GHLF. So thank you, Danny, for that reminder.
Zoe Rothblatt 09:10
Yes, thank you, Danny. And I learned from you just now about the study led by Kelly in our organization about the emotional and mental impact of COVID.
Steven Newmark 09:20
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories or anything else that’s on your mind. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 09:32
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 09:38
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 09:43
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 10:01
I’m Steven Newmark, we’ll see you next time.
Narrator 10:06
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network
S3, Ep 21- It’s Time to Start Your Wellness Evolution
What is your trilogy of living a healthy life? Is it the body, mind and soul or perhaps exercise, nutrition, and mindset? Whatever it is, we are all part of an evolution of wellness. In this episode, we introduce you to a new GHLF podcast, “Wellness Evolution” with its hosts Angel Tapia and Danielle Ali.
“Your community is such an essential part of your wellness,” says Danielle. “We have an opportunity to bring the community together to discuss mental health, like the physical wellness, and how that can change the experience that we’re having as a patient,” adds Angel.
S3, Ep 21- It's Time to Start Your Wellness Evolution
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Danielle Ali 00:09
Your community is such an essential part of your wellness.
Angel Tapia 00:12
We have an opportunity to bring the community together to discuss mental health, like the physical wellness, and how that can change the experience that we’re having as a patient.
Zoe Rothblatt 00:24
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. And yes, you heard that right. It’s just me, Zoe, this week. But don’t worry, because we have not one but two guests. As you know, our goal here is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. Before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from, and you can check them all out at ghlf.org/listen. Our shout out this week will be to Wellness Evolution. We have both of the hosts here with us today to talk more about mental health and advocacy. And we look forward to that conversation. But before we jump in, let’s start as we always do with a listener comment. This one is from Casey A., who wrote, “I feel so comforted by this podcast.” Well, thank you, Casey, we feel so comforted by your comment and all of our listeners. Okay, let’s jump in. Welcome Angel and Danielle to The Health Advocates. Angel and Danielle are the hosts of Wellness Evolution, a new GHLF podcast, and are here today to talk about caring for your mental health while advocating. So why don’t you both introduce yourself and a little bit about the podcast. Angel, welcome.
Angel Tapia 01:44
Thank you so much for the invitation, Zoe. I am a Patient Advocate and Hispanic Community Outreach Manager with GHLF. The podcast was really created as a way to have a conversation with individuals and healthcare professionals to talk about really what is wellness, what is our well being challenges, what are the triumphs, and also to learn from stories of those that have experienced it, those that help us get through some of those situations, and really learning the relationship between health and wellness.
Zoe Rothblatt 02:14
I’m so excited to learn from you. And we also have your co-host here, Danielle. Welcome, Danielle.
Danielle Ali 02:16
Thank you so much, Zoe, for having us on here on The Health Advocates. And hello, everyone. I’m Danielle, the System Analyst at Global Healthy Living Foundation. I think the beautiful aspect of our podcasts is that it ties together real stories and challenges that everyone faces and has a simple wellness practice that of course can not eliminate any of the challenges that you may be facing, but can help bring you a little bit more balance in facing those stressors that life has to offer, especially as a person living with a chronic illness.
Zoe Rothblatt 02:50
Thank you both so much for joining us. I want to talk a little bit about the intersection between advocacy and wellness and learn from each of you what advocacy means for you and how exactly it played a part in making your podcast, Wellness Evolution. Danielle, if you’d like to start.
Danielle Ali 03:06
Advocacy means to me is telling your side of the story that can help a bigger picture evolve. And I think wellness has a part in that because you cannot be a good advocate if you’re not a good advocate for yourself. Self care, knowing when things are a little bit too much. There’s advocacy burnout, that is very, very real. And if you don’t give yourself back the caring that you need and the betterment that you want to see in the world, then you can’t advocate for the better world.
Zoe Rothblatt 03:36
Wait a minute, advocacy burnout? Tell me a little bit more about that.
Danielle Ali 03:40
Advocacy burnout for me, I saw really the first time in 2020. There was a lot of advocacy in so many different areas, a lot of people were more aware, especially in our healthcare system of things that were going wrong for a lot of groups. So people were advocating and people were taking this like globalized responsibility to solve these big problems that as individuals we might not be able to solve, but we feel like we do. And when you have that passion with something, it can exhaust you. It can exhaust you mentally, it exhausts you physically, because now you’re giving so much energy to this very big problem and not at all to yourself. So just like a burnout in a job when you do too much of a thing that can cause a lot of different stressors, you get burnout.
Zoe Rothblatt 04:25
For sure. And I always say that you’re living with a chronic illness, you’re already managing that plus the burnout plus everything else. It’s a full time job in and of itself. And I really do feel like many in our community get burned out so easily. We have the Spoon Theory which says that you only have a number of spoons per day. And a person with chronic illness starts off with less spoons and each thing you do requires a spoon and that’s one less spoon for the next thing you have to do. And I think that what you’re describing is part of that Spoon Theory where eventually you run out of spoons and it’s just continuing to take when you don’t have anything left to give. And Angel, the portion of the podcast that you host is longer form interviews. Do you have any advice as our wellness expert on coping with burnout?
Angel Tapia 05:11
I love that you said wellness expert, because I think we all are that in a way. We know what feeds us, what helps us. And I think it’s learning what we need and how to be consistent in that. And in talking to the patients, there’s always this common thread of being given either inadequate unfair treatment or care, whether it be through insurance, whether it be communication with family, at work, relationships, or friends.
Gina Hessburg 05:36
Going through this journey, I’ve just learned a lot and have been overwhelmed by how difficult it can be.
Angel Tapia 05:44
So really finding a way to advocate for yourself, I know there is an inadequacy here, finding the strength then to have that voice to share it with someone. And advocacy can be as large as doing something through 50 State Network and advocating with legislatures or just advocating within a relationship with family or friends. So it’s really I think about speaking up when you feel that there is something that affects you mentally, physically, emotionally, and you want to have to share your story, which is the difficult part of it. But once you do, that really opens up for people to learn more, be supportive, and engage in what you’re going through.
Zoe Rothblatt 06:20
Speaking up can be really nerve racking and cause a lot of stressors. In your interviews, did you come across any tips on how to take care of yourself while you’re experiencing these stressors?
Angel Tapia 06:31
One thing I realized is that the less we say, or the less we ask for, the less that we then receive. So I think the importance of speaking up will show us that we can yield better results. Within the Hispanic community, we have a Patient Leaders Group, and what I’ve really noticed is that giving them the words to be able to speak to their physician or speak to their family about their chronic illness condition provides a way for them to also feel some resilience and pride in knowing their story, having some ownership in what their experience is and what they’re able to teach others. And I think that that’s the best way to advocate for yourself is you have to ask those questions of others, you have to provide information and education for those around you. It can be challenging, but the more that you do it, I think you’re more comfortable with addressing these issues in different platforms.
Zoe Rothblatt 07:25
For sure. I totally agree. Practice makes perfect. And you know, I think that the word wellness gets tossed around a lot these days. And I love how you guys are really touching on the advocacy portion of wellness, because I think that’s something that’s not discussed and giving tangible advice to people. Part of your podcast is these breathing exercises, Danielle, that you host.
Danielle Ali 07:48
Deep breathing is a tool used in meditation. However-
Zoe Rothblatt 07:52
Can you talk about how you decide to do these, what benefits it has, and how it just plays a role in your wellness?
Danielle Ali 07:58
It was kind of brainstorming the entire podcast and in thinking about how there’s so many, especially in like modernized wellness spaces, podcasts and shows about what wellness means and meditation and breathing and using all these terms very interchangeably to sell as a whole package. But in my own personal journey with chronic pain as well as mental health, these wellness practices came across my path and I kind of digged a little bit deeper because in more older traditions, they were used separately but together and to see how that is. When Angel and I were speaking about it, the key was with these breathing exercises to get people to see breathing as a health benefit and not something that’s always tied into meditation because I think when people think meditation and or mindfulness, they get a little bit taken aback because it seems a little complex or abstract, where breathing is something that we do and you can manipulate your breathing to help you ground yourself in a specific emotion, to help let go a specific emotion. We all have emotions, and especially when you’re dealing with a chronic illness, chronic pain, those emotions could inflame whatever symptoms you’re having. So if you can control or help feel out the emotions that you need to feel out, it can help your overall pain and help your overall health wellness. Wait a moment.
Zoe Rothblatt 09:24
And Angel, what was it like for you when Danielle came to you with this idea and then hearing the breathing exercises recorded as a final episode? What was going through your head at that time?
Angel Tapia 09:35
I think it just made a lot of sense to have the breathing exercises as a part of the podcast because the things that we do automatically, we can easily take for granted and breathing is one of those things. It just happens. We don’t have to think about it. And so sometimes we don’t really realize that putting an effort into breathing can be so helpful. So when you take that moment and you focus on your breathing, you realize how good it does feel, how it does clear your mind for that moment, how your body does immediately relax, and you have an actual exercise that you can do that has immediate results. Who doesn’t love that? I get to try a breathing exercise and in that moment, while I am present, I’m feeling that relaxation. And it was just a really great fit, because we do talk about some heavy mental, physical health aspects that are challenging for folks. So to be able to bring in the breathing exercise as a way to just kind of release after listening to some of this intense feedback or stories, I think is just a great way to move on from the next task at hand.
Zoe Rothblatt 10:39
I can testify to what you’re saying that you get this immediate benefit. When you guys had first shared with me the podcast episode, and then I listened to the breathing. I actually had a meeting shortly after. And I realized I went into that meeting, feeling just so much more centered and calm. It just gave me a break in the day, to focus on myself and just be in the moment. And I think we need that a lot. We need that within the context of dealing with chronic pain, like you mentioned, Danielle. We need it with advocacy. It’s a hectic day, take a break.
Angel Tapia 11:08
It’s also okay to just do what you can. And I think we become our harshest critics at times when we’re trying to advocate for ourselves or for others. There’s this book that really got me into the new thought and wellness idea is The Four Agreements by Don Miguel Ruiz, and one of the agreements is to always do your best, whatever that may be in that moment. So we need to make sure that we don’t push ourselves to exhaustion, we give ourselves kudos for whatever we’re able to do within the time that we have with the energy that we have in that moment. And the interview that we have on Wellness, Evolution, the “Advocacy and My Chronic Illness”, which is raising your voice for yourself and others just touches on that burnout and how it can take a toll on your mental health. It was very heart opening raw conversation that really sheds a light on the importance of support when you’re an advocate and also the importance of your mental health and reaching out to others when you need support.
Zoe Rothblatt 12:10
Did your view of wellness change when you started doing this podcast? Danielle and then Angel.
Danielle Ali 12:16
Such an interesting question, Zoe. I think the whole point of the podcast is that we’re ever changing. And that wellness is your evolution. Every day, you come with new information from the moment you wake up to the moment you go to sleep. Work, social, health wise, every piece of information that you receive is going to impact on how you view wellness, whether it stresses you out, you might learn something new. And I think one of the things I remember telling Angel in the beginning of this doing the breathing exercises was, “I can’t do this alone, who am I? I’m just learning all this stuff. I’m a student, how am I going to lead these things?” And trying to look for experts. And then the experts not lining up with exactly what we’re trying to say and do in the chronic community. And Angel’s just being like, “You being a student is more than enough because we’re all students.”
Angel Tapia 13:05
And that was very true, because we had to twist her arm to just figure out that in seeking we’re learning and that taking the listeners on that journey, I think is the best way to do it. We don’t want to sound like experts, we want to invite experts to speak but we always want to have that curiosity and sharing things as we’re learning it because I think it’s a great way to show everyone that you could start from anywhere and the skills that you gain as you’re doing these practices build upon each other. And that’s why I say we are all experts in our own way we know what makes us feel good. We just have to try it. And then after we do, be consistent in those practices when we start seeing those positive results.
Zoe Rothblatt 13:52
By the way, that’s something we talk about in advocacy all the time, you know the power of sharing your story, and that each of you has an important story. And that legislators and their team can go and look up the facts and read the bill easily. But what they can’t look up is your story if you don’t say it. And you know, just showing up, Danielle, showing up like you showed up for this podcast and trying it out and just sharing your story, it’s really impactful. And I think that when people listen to your podcast, they will feel that these are real people sharing their heart from their wellness journey. And I’m just so excited. I know for me when I’m feeling that burnout and that lag I get so energized from hearing patient stories. I saw a comment from someone this morning that said that one of our resources helped them get a diagnosis and that they felt empowered to speak up and ask for the right blood tests and advocate and it’s just so important that we keep putting out this content and helping people and I think that you guys are touching on something really special because there isn’t a lot about wellness and chronic illness that goes deep. And I think you guys go deeper than a lot of other resources go. And that’s what patients really want. They really want to connect and understand and have people speaking to them that also live in chronic pain that really understand their journey.
Angel Tapia 15:09
And one thing I did notice in a lot of the interviews is that everyone’s story is unique. But there are so many things that make us alike, and we can always find something in someone’s story that we can relate to whether it is a challenge or a triumph. So being able to connect, knowing that we all want to feel well, and we all want to evolve, I feel that this is a great podcast that just intersects all of that. And advocacy is a result of us sharing these stories, and finding ways to support each other, and giving people an opportunity to really share their stories. So I appreciate that we have an opportunity to bring the community together to discuss things that maybe fall outside of just the chronic illness scope, but do bring in the other areas that affect us like the mental health, like the physical wellness, and how that trinity can change the experience that we’re having, as a patient, as a caretaker, as a supporter of someone with a chronic illness and so on.
Zoe Rothblatt 16:12
Wow. It’s really impactful. Thank you, Angel. And thank you, Danielle. My last question for you both is something that we’ve touched on today. What does community mean for wellness? How do they work together, intersect? Danielle, let’s start with you.
Danielle Ali 16:26
I do think community and wellness go hand in hand. You hear the word support system, and a lot of things with a lot of different health care providers, they always ask you if you have a support system. And that is because your community is such an essential part of your wellness, we are social beings. Even if you identify as an introvert, at some point, you crave some sort of social aspect, or you need to engage in some sort of social aspect. And I think community is where we can find bits of ourselves in other people. One thing for me and my personal journey within my community and going through my own healing journey on a mental health side, they showed me even though resilience has a very negative connotation, because you have to be forced to be resilient, and that can cause stressors. But in my resilience, I am so kind to everyone else and showing me how kind I am to everyone else and how unkind I was being to myself by not giving back to myself, was something I was so thankful for my community for my support system. So your community really is not only just people to lean on when things are hard, but also they’re to show you and kind of give you a mirror on just, “Look at you. You’re an amazing human being and you got a lot going on. And sometimes you have the thoughts in your head, but you need the people around you.” And they don’t have to intentionally do it. They do it in little small ways. And that brings that life into where it’s like, “Wow, I am a good person, and I should be giving back to myself more and I am dealing with a lot.” And that helps in that wellness aspect of feeding off of the people around you and the people that care about you.
Zoe Rothblatt 18:01
Right, totally agree. Angel, how about you? What does community mean to you?
Angel Tapia 18:05
I agree with Danielle, I think it’s the parts that come together to help us feel supported. Because it’s not just about the disease, it’s about the illness experience. And that means that we will go through things with a chronic illness or a mental illness or other health challenge as a mom or as a sister or as a co-worker, there’s just so many facets of who we are as individuals that when we look at a chronic illness, and we look at mental health, and we look at physical wellness, there are still so many subsets of that, that there are communities there to support us because of the experiences that we’re going through that can relate to others. We have an interview with Rebecca Council for Wellness Evolution, and we talk about the LGBTQ community and how that has been a support for her to be able to get through her chronic illness. And you see the interconnectedness that the differences that we have and the similarities that we have, can create a sense of support in so many different ways. There are really layers to it, because we need support for chronic illness. But we also need support for other individualities that we have. And building a community that is multifaceted is very important to make sure that we are addressing all of the areas that give us the overall health wellness experience that we all deserve.
Zoe Rothblatt 19:32
I totally agree with both of you. Thank you both for sharing. I feel as The Health Advocates, we’ve created a bit of a community here and it’s really nice to be able to invite you guys on and chat with you and create our own little community. I think that community doesn’t always have to be so large. You can keep it as a small group and really have the people that you rely on and depend on and you never know when you’re going to find great conversation and meet new people. And I think it’s really special that we’re able to sit down and talk together.
Danielle Ali 20:02
Thanks for having us, Zoe.
Angel Tapia 20:03
Thank you so much, Zoe, for having us on today. I encourage everyone to please visit Wellness Evolution podcast to listen to all the great stories and learn more about wellness and your evolution.
Zoe Rothblatt 20:15
Thank you guys so much for joining me on The Health Advocates. That brings us to the close of our show and at the close of every show, Steven and I usually share learning so I will share that today I learned from both Danielle and Angel how important it is to just take care of yourself while you advocate and how every little bit really does count and you don’t need to go so large scale. You can really start small and build up and just take care of yourself. So I hope you learned something too. I’d love to hear from you about your wellness and advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip. And who knows whatever you share maybe included in our listener feedback portion of future episodes. Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week. Well everyone, thank you for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt and I’m excited to be joined by Steven next week for our episode. We’ll see you next time.
Narrator 21:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 20- Don’t Let Them Gaslight Your Health
People living with chronic pain are often misunderstood. Their ongoing struggles cause those lacking compassion to gaslight them and minimize their symptoms. In this episode, we meet Catina Morrison, who is using her own experiences living with rheumatoid arthritis, fibromyalgia, and endometriosis to teach others how to stand up and self-advocate to overcome people, pain, and stigma.
“People who complain of chronic pain are often told that it’s in their head. “Oh, it can’t be that bad. It’s just a bad period. Aren’t period supposed to be painful?” No, they’re not,” says Catina Morrison, Corporate Nurse and Chronic Illness Coach.
S3, Ep 20- Don't Let Them Gaslight Your Health
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Catina Morrison 00:09
People who complain of chronic pain are often told that it’s in their head. “Oh, it can’t be that bad. It’s just a bad period. Aren’t period supposed to be painful?” No, they’re not.
Zoe Rothblatt 00:22
That’s like the biggest, like, eye opener when you learn stuff like that.
Catina Morrison 00:25
Exactly.
Steven Newmark 00:28
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy of the Global Healthy Living Foundation.
Zoe Rothblatt 00:38
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:43
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of our great podcasts here at GHLF. You have so many to choose from.
Zoe Rothblatt 00:56
And you can check them all out at ghlf.org/listen. This week, I wanted to do a quick shout out to Talking Head Pain. There’s new audio guides that are part of this series and the latest one was about different treatment options available for migraine. And it’s just a really informative listen. So definitely check it out.
Steven Newmark 01:14
I look forward to that.
Zoe Rothblatt 01:15
So Steven, are you ready for our listener comment?
Steven Newmark 01:18
I am ready.
Zoe Rothblatt 01:19
This one is from Taylor G who wrote, “The energy is great. I always feel like I’m in the same room with the hosts.”
Steven Newmark 01:25
That’s fantastic. Thank you, Taylor for writing in. We’re all a community together.
Zoe Rothblatt 01:30
This week on The Health Advocates, we have a special guest here with us. Catina Morrison, who’s a Corporate Nurse and Chronic Illness Coach.
Steven Newmark 01:37
Catina is here to talk about our advocacy, and how she helps women with chronic illnesses advocate for themselves.
Zoe Rothblatt 01:43
And we look forward to that conversation. But first, we have some news updates for our community. Steven, the US has reached this grim milestone, we’ve surpassed 1 million COVID deaths.
Steven Newmark 01:53
It’s horrific. A million people, that would be the entire population of San Jose, California.
Zoe Rothblatt 01:58
When you put it like that it’s really hard to believe.
Steven Newmark 02:00
It feels like the numbers are just numbing, they have no meaning anymore.
Zoe Rothblatt 02:04
Just quickly remember, in the beginning of the pandemic, when the New York Times had put the list of everyone that had died so far, that was astounding.
Steven Newmark 02:11
I remember that.
Zoe Rothblatt 02:12
And there was a list of names all over the front and back page or whatever it was, I can’t believe it’s like we’re still adding to that list.
Steven Newmark 02:19
In some good news this week, Novavax is confident that their COVID vaccine will receive FDA authorization in June.
Zoe Rothblatt 02:26
This is great because this is another shot on the market. And this would offer a choice to those who are not vaccinated who didn’t want an mRNA vaccine because this uses different technology than that.
Steven Newmark 02:38
This uses essentially the same technology that we’ve used in the past for past vaccines. So there are still a handful of folks who are vaccine hesitant, this is what they’ve been waiting for. So that’ll be helpful.
Zoe Rothblatt 02:48
And Steven, you’re a parent, I saw booster shots were authorized for kids.
Steven Newmark 02:53
Yes, yes, yes, yes, yes. It’s a good time to get boosted with Omicron, the BA variants raging. So that’s really good news for children, ages 6 to 12. I’m excited for that.
Zoe Rothblatt 03:03
And lastly, the third round of free COVID tests are available, which makes me so happy. All US households are eligible for this third round of tests. And each order now is eight tests and previously had four. So we’re getting more and it’s expanding its reach.
Steven Newmark 03:19
That’s good.
Zoe Rothblatt 03:20
Okay, well, let’s jump into our guests. Hi, Catina.
Catina Morrison 03:24
Hello. It’s nice to be here. Thank you for having me.
Zoe Rothblatt 03:27
Thank you for being here with us.
Steven Newmark 03:29
Thank you. So just the briefest of introductions. Catina Morrison is a Nurse and Chronic Illness Coach. After decades of symptoms, such as chronic pain and fatigue, she was diagnosed with rheumatoid arthritis, fibromyalgia, and endometriosis in her 30s. Her experiences with the healthcare system fueled her passion for assisting women with autoimmune diseases to reach their best quality of life so they can stop hiding and start thriving. She helps women with chronic illnesses uncover their purpose by doing what we’re meant to do, walk in their power by advocating for themselves in all aspects of life, and achieve strategic growth in health, career, and business.
Zoe Rothblatt 04:03
I wanted to start off by asking about what advocacy means to you and how you found your voice in order to help others.
Catina Morrison 04:11
Advocacy to me is so vital in all aspects of life but especially in our health. And being your own advocate to me means finding your voice and using it in order to be an active participant in your health and to take the steps to ensure that you’re receiving the quality of health and care that you deserve. In many cases, we find that people find it uncomfortable, especially those of us who live with chronic illnesses, to actually speak up for themselves, advocate for themselves, to make simple requests. Many are experiencing things such as medical gaslighting, and the sense that their feelings and symptoms are minimalized. But when we learn to advocate for ourselves, we’re ensuring that we are heard, that we can stop hiding in a sense by being afraid of speaking up for ourselves and start thriving in all aspects of life. And I found that to be the case, for me personally being someone who has lived with multiple chronic illnesses for over 30 years, and being a registered nurse and working in the healthcare system for more than 23 years now. I know the value and the importance of it personally and professionally. So that’s why I’m out here doing my best to encourage as many as possible to learn to advocate for themselves. Find your voice and use it because you deserve to get the best care possible.
Steven Newmark 05:29
Can you give an example, perhaps, of what you mean by advocacy?
Catina Morrison 05:32
If we take my experience, being someone who started having symptoms at the age of 11, and was not diagnosed until I was in my 30s. It took me some time to find that voice and to effectively use it, you can see. And that’s why I try my best to minimize the amount of time it takes others. But when we think about health advocacy, it means being able to openly and honestly and transparently speak about what your particular circumstances are. What are your symptoms? What are your feelings? What do you need from your healthcare provider? If you’re not comfortable with the answers that you’re receiving, getting the answers and asking for them to place them in as simple of terms as possible so that you can understand it clearly. And asking them to be a member of your team, not a dictator of your health. So that means understanding what type of care do you want. It actually means you doing some self evaluation, too. Do you want natural, holistic methods, for example? Because we live in a time where people are trying to go as natural as possible, because they know the effects that medications can at times have. Do you want your doctor to really listen to what you’re experiencing, and provide you a assessment of all of your options, and then allow you to say exactly what you want out of what they provide them and be willing to respect your wishes? Are you looking for kindness and compassion and the type of treatment and care that you’re receiving? So advocating for yourself in all aspects of your health. Are you actively being a participant? Are you also a member of your healthcare team? Making sure that you are feeling comfortable and confident that you’re receiving the best quality of care because we all want the best quality of life. It starts oftentimes with ensuring that we’re getting the best health care possible.
Zoe Rothblatt 07:23
I love what you’re talking about, that you as a patient have such an important role in your care and a seat at the table. And it really should be a team effort. And no one else can tell you how to live your life. It’s you and your life and you want to do what’s best for you. I wanted to pick up on something that you were mentioning before about medical gaslighting. First, maybe define what that means for you? And second, what do you do when that’s happening?
Catina Morrison 07:49
I think this is such an important topic because it’s a term that’s becoming more prevalent nowadays. It’s so important that we recognize our rights when we are before someone who is medical gaslighting goes or we’re being medically gaslit. That means that your symptoms and your feelings, what you’re openly explaining that you’re experiencing is being minimized. For example, terms like it’s in your head. People who complain of chronic pain are often told it’s in their head. “Oh, it can’t be that bad.” For those of us who have experienced a lifetime of endometriosis or fibroids, ovarian cysts, women health concerns, you might hear terms like, “Well, it’s just a bad period. Aren’t periods supposed to be painful?” No, they’re not.
Zoe Rothblatt 08:38
That’s like the biggest like eye opener when you learn stuff like that.
Catina Morrison 08:42
Exactly. So that’s what medical gaslighting is, is when your symptoms and things that you are really feeling is being turned into something very minut or being considered a mental health concern rather than an actual physical issue.
Zoe Rothblatt 08:57
I’ve experienced it. You’ve experienced it. I know many in our community have and it just so unfair.
Steven Newmark 09:03
Can you tell us a little bit about your podcast, Inflamed Sisters Thriving?
Catina Morrison 09:08
Hello! What is an Inflamed Sister? I started the podcast in a hope to unite women and others who are suffering with chronic illnesses and knowing that it is still possible to thrive despite living with chronic illness. I named it Inflamed Sisters Thriving because in a sense when we live with rheumatic diseases or inflammatory diseases like rheumatoid arthritis, as well as fibromyalgia, lupus, so when you live with those types of conditions, in a sense, you’re inflamed. But it’s not something that we should be ashamed of. It’s something that is a part of who we are. It doesn’t define us but it is a part of who we are. So I am so excited to have this podcast as a way to not only have guests on who share their experiences transparently in order to encourage inspire others, but also to raise awareness to things that affect people who live with chronic illnesses and ways that they can learn to cope. And like I said before, in a sense, stop hiding what they’re going through and learn to live and be okay with being vulnerable, transparent, and still being able to learn to live happy, fulfilled lives, in spite of their health conditions.
Zoe Rothblatt 10:24
Congratulations on the launch of your podcast. It’s so exciting. I did have a listen. And I’m just so excited for new episodes to come out and see where it takes you.
Catina Morrison 10:32
Thank you, I appreciate that.
Zoe Rothblatt 10:37
How did you decide to make your work female centric? I was feeling a little inspired by what you were just talking about where your pain is dismissed. And I think that often as a woman, you’re told, “Oh, you’re complaining too much, you’re this, you’re that.” And it’s hard to be a woman in this world. And it’s hard to be a woman living in chronic pain.
Catina Morrison 10:55
We have to recognize the type of society that we live in. It’s a patriarchal society in which generally women are gaslit in a sense, or minimized as far as what their feelings are. And when we talk about our pain, and our concerns, and our issues, it’s looked at as, “You’re complaining too much, oh, that’s what women do.” But these are real issues. While what I do and talk about can help both men and women, I chose to focus in this area, because having the career that I’ve had in health care, I see how women are moreso impacted in the sense of not being heard and having chronic illnesses and conditions that don’t get the awareness and the research that it deserves. I want to raise awareness to it. And I want women to join their voices and forces together to know that it’s okay for you to say, “I deserve better and I want better.” And it’s okay to know that just the way that you hire a doctor, you can also fire them. Second opinions are okay, women. We don’t have to be tied to just one doctor for the rest of our life, we can have many choices. In that sense, I chose to focus in on women because of my own history with health, what I’ve seen in healthcare, and being a nurse, I know that this population needs others who are willing to advocate for them and push them to become their own advocates as well.
Zoe Rothblatt 12:22
I love that so much. Thank you for being a champion for women out there.
Catina Morrison 12:26
Thank you.
Steven Newmark 12:27
Catina, you’re creating a workbook about self advocacy. Can you tell us about this project? What sparked it and what people can look forward to learning?
Catina Morrison 12:34
Yes, I was looking for an opportunity to create something that I knew would really help others. Because we can talk about things, but many of us learn in various ways. And me when I see it, and when I read it, and when I do it, it becomes a part of who I am. So I said, “Okay, what can I put out there that I can make accessible to women, it’s free, that can help them to start that journey to finding their voice, learning how to use it and provide them different examples of ways that they can do it in their healthcare?” So I created the book, The Inflamed Sisters Guide To Thriving With Self-advocacy For Health. And in this book, it does exactly that. It was created to help people to find their voice so that they can thrive in all aspects of their health and start them in that journey. I am going to create various books that speak in reference to self-advocacy. But I wanted this to be that first step. And in fact, I’m going to be joining a summit. My speech will focus on self-advocacy. And I wanted to make sure that this book was available at that time so that I could reach as many people as possible and encouraging them and showing them how they can be their own advocate in their health.
Zoe Rothblatt 13:49
I love what you mentioned about people learn in different ways and that you created this book to reach more people. I think that’s so important. What’s your one tip for self-advocacy?
Catina Morrison 13:59
What I recommend for people is to start journaling. Journaling is so important for someone whether you live with chronic illness or not. You’re going to the doctor for a reason. So journal what is going on. What do you want the doctor to address for you? What questions do you want to ask them? When you leave that appointment, what is it that you want to understand? As you do that journaling, it’s so important to document your medications. Document, also, how you’re feeling at the moment. When you go to the doctor, you’ll already have outlined what you want to say, what you want to have addressed. And you won’t leave that appointment without getting those questions answered, because we will go into the doctor’s office and then we’ll leave and it took us a month to get the appointment, or more sometimes, and we did not get all the answers to the questions we had. In fact, we didn’t even ask them because we forgot them. But by journaling you can ensure that you can be that active participant and you can advocate for yourself by having everything outlined for you easily in front of you. So the best thing you can do start journaling, documenting your symptoms, documenting your concerns and questions. And when you get in that appointment, be ready to use your voice.
Zoe Rothblatt 15:14
That’s great. It’s so true what you mentioned.
Steven Newmark 15:16
Absolutely. Where can people follow you, stay in touch, listen to your episodes?
Catina Morrison 15:21
You can find me on Instagram. My Instagram handle is @Iam_CatinaMorrison. You can also find me on my website, it’s nurselovesessentials.com. There it details what services I offer. And also my podcast, blog, and episodes are attached there. You can find my podcast, Inflamed Sisters Thriving, on Anchor, as well as Spotify, and it’s on all the additional outlets.
Steven Newmark 15:46
Great. I’m excited to finish up our episode so I can go listen to Inflamed Sisters Thriving.
Zoe Rothblatt 15:50
Well Catina, thank you so much for joining us today and sharing your story with us and our listeners. It’s been great getting to know you a little bit more. So just thank you.
Steven Newmark 15:59
Thank you.
Catina Morrison 15:59
I appreciate you having me. And thank you for all the work that you all are doing to support this community. I appreciate the opportunity to be here.
Zoe Rothblatt 16:08
Well, that brings us to the close of our show. And at the close of our show, Steven and I share what we learned today. So Steven, what did you learn?
Steven Newmark 16:15
Well, I learned a lot from Catina, very specifically how prevalent gaslighting is particularly amongst female patients. And that’s disappointing to have learned. But I’m glad that there are people like Catina who are out there and helping to teach patients how to advocate for themselves
Zoe Rothblatt 16:30
For sure, me too. And I was just more of a reminder I guess, than a learning, from Catina about how important it is to use your voice and just start talking and asking and telling your needs because at the end of the day, it’s your life and it really does matter.
Steven Newmark 16:46
Well, we hope that you learned something too. We’d love to hear from you about what you’re dealing with in your doctor’s offices. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:58
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 17:05
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week
Zoe Rothblatt 17:10
Well everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts, and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 17:27
I’m Steven Newmark. We’ll see you next time.
Narrator 17:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 19- The Alphabet of COVID and Why It Matters
A series of letters and numbers have changed our lives: COVID-19, SARS-CoV-2, Omicron, Delta, BA.4, BA.5. So no wonder we’re confused by the virus and all its variants. In this episode, our host Zoe Rothblatt leads our class in sorting through the confusion and, together with Steven Newmark, bottom line why we need to understand it all.
“How do you recognize your symptoms? I did a COVID test because I was so nervous. I’m like, “No; it’s allergies.” And it would really be helpful if I read up more so I could recognize those symptoms and not bring myself into a panic,” says Zoe, Patient Advocate and Community Outreach Manager at the Global Heathy Living Foundation.
S3, Ep 19- The Alphabet of COVID and Why It Matters
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
How do you recognize your symptoms? Right now, I have allergies. I did a COVID test because I was so nervous. I’m like, “No, it’s allergies.” And it would really be helpful if I read up more so I could recognize those symptoms and not bring myself into a panic.
Steven Newmark 00:24
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:34
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:39
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:53
We sure do. And you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Talking Head Pain hosted by Joe Coe. New episodes are out for season two featuring a diverse group of migraine advocates, and it’s just a great listen. So check it out. Let’s start as we always do with a listener comment. Are you ready, Steven?
Steven Newmark 01:14
I am ready.
Zoe Rothblatt 01:15
This one came from Alex G. who wrote, “Great podcast. Quick and easy to follow.”
Steven Newmark 01:20
Quick and easy to follow. And that’s no accident, Alex G. We know that your time is important and we try to condense information in as short a format as possible
Zoe Rothblatt 01:28
And have fun while we do it.
Steven Newmark 01:30
Absolutely. I’m excited for today’s episode because I was ranting about the variant and the subvariants. And how do you know the difference between a subvariant and a variant? What does that mean? Who is this there that some exalted council that sits on high? And I thought we should get an expert on to talk about it. And I realized we can just do some research and figure out what this stuff is all about and present it to our listeners. So hopefully, folks will find that interesting.
Zoe Rothblatt 01:55
For sure. I definitely learned a lot in my research, and I’m excited to talk about it. But first we do have a few news updates. The first one is that we have our COVID-19 Patient Support Program quick poll results. So this was sent out by GHLF to our Patient Support Program. We wanted to learn more about our community’s experience with Evusheld, which is monoclonal antibodies. It’s a medication that you can take to prevent COVID before exposure in immunocompromised individuals. So you know you would take this before you come in contact with somebody as a preventative treatment.
Steven Newmark 02:29
So the idea being that if you are going to be attending an event where you’re putting yourself at risk, not this is not something that should be taken daily, but if you’re going to attend an event, a wedding or a family gathering, this could be helpful for folks who are immunocompromised as a preventative measure.
Zoe Rothblatt 02:44
And because we know that people are immunocompromised may not have garnered as full of a response as you know our quote unquote healthy population. So this is sort of an extra layer of protection for immunocompromised individuals.
Steven Newmark 02:56
So what did we find?
Zoe Rothblatt 02:57
What the poll found was that 64% had heard of this medication, and of those nearly half have had at least one dose.
Steven Newmark 03:06
Wow, that’s pretty high. I’m surprised.
Zoe Rothblatt 03:08
Yeah, me too. If I’m gonna be honest, I really only know about it because we work here at GHLF. I haven’t heard like any friends or family talking about it. So I’m pretty impressed that, you know, 64% have heard of it. So what was interesting is most received it through their specialist doctor. So rheumatologists, oncologist, neurologistsn nephrologist. And you know, for those who had not received it, we asked why. And we found the majority didn’t get it for three reasons. The first was because their doctor just didn’t recommend it for them. Maybe their condition didn’t qualify or whatnot. Two, there’s limited availability. There was a lot of waitlist and low access and different priorities near them. And three, their doctor want to wait for a little bit more information because as we know this is under emergency use authorization and not fully approved so they wanted to wait a little bit longer to see how things play out.
Steven Newmark 04:01
Also this week, we, GHLF, testified on a bill in the Delaware State Senate. The bill would ban copay accumulator adjusters. Basically, the law would make it so that copayments made using a copay assistance program, which many of our patients use, will count towards patient deductibles and out of pocket maximums, thus overall saving costs for our patients. Our testimony was delivered by our colleague Corey Greenblatt, who you’ve heard from before on our show.
Corey Greenblatt 04:29
I advocate for laws like this because we should be doing everything we can to make it easier for patients to access medications that work for them. And copay assistance and this legislation do just that.
Zoe Rothblatt 04:42
As an aside, I recently ran out of my copay assistance and have a copay accumulator adjuster and this is so personal and frustrating right now. And every time I go to order, luckily, the assistance program is really nice and will give extra benefits. But it is so stressful, just even coordinating with all the different players that you have to make phone calls and take time out of your day. And a bill like this would help patients get their medication. It would save so much time and frustration. I’m just like really hoping this gets passed. And of course, we’ll keep everyone updated.
Steven Newmark 05:18
It is frustrating. I remember once trying to work the copay with the copay card and dealing with my specialty pharmacy. And there was a moment that I was sitting in my doctor’s office with my doctor, his office manager, myself, I have a background in health policy, right, and my wife who is a social worker. All four of us were on separate cell phones, calling for 20-30 minutes to resolve an issue. Unbelievable. Four people who are clearly experts in this thing.
Zoe Rothblatt 05:48
It’s really not easy. Especially when you don’t feel well, it’s so difficult to pick up the phone and do all this. You have such limited energy anyways. Speaking about not feeling well and getting medications, the FDA approved Rinvoq for people with ankylosing spondylitis, which is always really exciting to get another medication approved and options for treatment for people.
Steven Newmark 06:11
Also, we have a few new mask mandates as the Omicron sub-sub-sub-sub-subvariant, whatever it is called, is coming back. The Bay Area, a few cities and agencies in the Bay area of California, are reinstating mask mandates. Some local school districts in Massachusetts are recommending that students wear masks indoors following CDC’s classification of Middlesex County. Massachusetts is having a high COVID transmission. Let’s get into this because I will admit to our listeners, I tasked you with doing the homework, so I’m excited to learn.
Zoe Rothblatt 06:43
Okay, so there’s a lot of terms running around. And as I did some research, I came across even more than I realized. And maybe we’ve been saying them without knowing. So there’s mutation, strain, variant, and subvariant. And then I was thinking, you know, we did say a new strain of COVID, and then switched it to variants. So what happened? Like I don’t know when that switch was, so let’s take it from the start. When you have a virus of SARS-CoV-2, the genetic material is RNA. And in order to replicate, that RNA hijacks the host cell and it uses that cell to duplicate itself.
Steven Newmark 07:21
I remember that from eighth grade bio.
Zoe Rothblatt 07:23
We’re going back to our bio roots. So errors often occur in this process of duplicating the RNA. This means that when it does duplicate, the virus is similar but not exact copies of the original virus. And these errors are what’s called mutations. So then the viruses with these new mutations are called variants.
Steven Newmark 07:43
Got it.
Zoe Rothblatt 07:43
And variants can differ by the original virus by a single or many mutations, it doesn’t really matter. Once it’s changed it’s known as a variant.
Steven Newmark 07:52
So a mutation and variant, while not exactly the same thing, are very related. Basically, the errors, what you’re saying, are called mutations. And then the new virus is called a variant-
Zoe Rothblatt 08:04
Yep.
Steven Newmark 08:04
-that is created. Got it.
Zoe Rothblatt 08:05
So a strain is a variant that’s built a little bit differently. And I think it’s like a super variant, because there’s so many mutations that alter the building block, the main structure, of it, so it behaves really differently to the parent virus.
Steven Newmark 08:21
Right. So you’re saying all strains are variants, but not all variants are strains?
Zoe Rothblatt 08:25
That’s right. You could think about it like it just a variant has a few or many mutations, but the strain really has changed the original structure of the virus. So then what is the subvariant. Subvariant means that it’s not distinct enough to be classified as an entirely new variant, and it shares many of the same genetic similarities with the original variant.
Steven Newmark 08:50
Hold on, let’s take a pause there. So the original strain, we’ll call that SARS-CoV-2, did that have a name or was that just the Wuhan strain?
Zoe Rothblatt 08:56
I think that was just COVID-19.
Steven Newmark 08:59
Essentially, they get names when they’re considered an actual variant. And then a subvariant, you’re saying, it’s a variant that is not distinct enough to be classed as an entirely new variant?
Zoe Rothblatt 09:09
Yes, here’s where it gets interesting. A subvariant can eventually become a variant. So BA.2 is a subvariant of Omicron, because it descended from this original variant, and it shares many of the same mutations as Omicron. So it has that common lineage. But it also has some genetic changes not seen in the initial version, which makes it different. But if it continues to spread and infect people in high numbers, it could acquire its own variant name, because at that point, it’s changed so much from Omicron.
Steven Newmark 09:42
So you’ll take Omicron, Omicron was the variant, BA.1 was a subvariant, BA.2 was another subvariant. Then there are sub-subvariants like BA.2.12, is a sub variant of BA.2?
Zoe Rothblatt 09:56
Yeah.
Steven Newmark 09:56
But one of these subvariants could sort of, for lack of a better term, break out and actually become, what comes after Omicron, P?
Zoe Rothblatt 10:03
Yeah.
Steven Newmark 10:04
As the next actual variant.
Zoe Rothblatt 10:06
Steven, I think you’ve got it.
Pickering (My Fair Lady) 10:08
Tonight, old man, did it. You did it, you did it. You said that you will do it. And indeed you did.
Steven Newmark 10:14
Thanks to you.
Pickering (My Fair Lady) 10:15
Oh, it was nothing, really nothing.
Zoe Rothblatt 10:17
It is so confusing.
Steven Newmark 10:19
I know, that’s why I made you do it.
Zoe Rothblatt 10:22
I couldn’t find this information in the context of another virus, which is really what I was looking for, to help shine light on this. So this was a really COVID focused research, very surface level. I’m sure there’s many experts out there that are saying we’ve glazed over so much. But from the gist of it, we had COVID, we got a variant, the building blocks have changed. Subvariant, it’s similar to that variant, but it also has the potential to become its own thing as it moves through the population. And by its own thing, I mean, a variant with a name.
Steven Newmark 10:54
Excellent. And as I understand it, if you do get infected with a particular variant, you are less likely to be reinfected with that variant in the future. You have greater protection against that variant than a subvariant, and you certainly have less protection against another variant. As I understand it.
Zoe Rothblatt 11:13
I understand it that way, too. And you actually brought me to my next question, like, why does it really matter? And is it a waste of efforts to keep looking at and naming these things? But of course, you just mentioned one of them. It does matter for reinfection. Who has protections? Who’s getting reinfected? How’s it moving through the population? If this one comes and people get it, is it endemic now? It does matter for how we’re looking at the virus.
Steven Newmark 11:39
Absolutely. I think it matters how quickly it moves. These Omicron variants, each one seems to move faster than the one before it through the population. So that’s important to know. If you want to develop a vaccine, you may want to specifically target a vaccine to a variant or a subvariant. It will take a lot of time to do that. But you have to start questioning how rampid it is. And if it starts to outlast all other variants to such a degree that it might be worthwhile to pursue a vaccine specific to a subvariant
Zoe Rothblatt 12:07
And why is this important for immunocompromised? I think it matters for how concerned we should be. Knowing if it causes severe illness. The newer ones have caused mild symptoms and I think it’s helpful to know what’s in your area and what’s causing what symptoms. Is it more virulent? How transmissible is it? How do you recognize your symptoms? Right now I have allergies. I did a COVID test because I was so nervous. I felt a sigh of relief that I saw a negative. I have them around, so I just did it. I’m like, no, it’s allergies. And it would really be helpful if I read up more, so I could recognize those symptoms and not bring myself into a panic.
Steven Newmark 12:43
And I would also add, I think it’s somewhat relevant if you’ve been infected to know that what you have likely been infected with is either still on the population, or it’s been replaced by a new variant. In which case, you probably have to take more precautions again.
Zoe Rothblatt 12:58
Sometimes it’s just nice to put a name to what you have.
Steven Newmark 13:00
True.
Zoe Rothblatt 13:01
When you get diagnosed. There’s like a really good feeling that’s part of this dread. That’s like, you know, I finally have a name. And I know COVID-19 as a name, but maybe getting more specific is actually kind of comforting to some people.
Steven Newmark 13:13
I can see that for sure. Not with COVID, but so many times I’ve gotten ill with something and I’ve gone to a doctor, and I just want to know what it had. Was it, is it a flu? Is it pneumonia? I just want to know. And once you get the diagnosis, I’m like, okay, at least I know it’s something that’s in the world. It’s not a new disease, because that would have been the scariest part, getting it early on.
Zoe Rothblatt 13:31
And a little more news in my research, there’s even more terms for variants. The CDC and World Health Organization have classified variants into different categories. So there’s variant of interest, variant of concern, and variant of high consequence.
Steven Newmark 13:48
These I actually know. A variant of interest is a variant that, compared with earlier forms of the virus, has genetic characteristics that predict greater transmissibility. And so there’s a belief when it’s called the variant interest that it’s going to be more transmissible. A variant of concern has actually been observed to be more infectious and is likely to cause breakthrough infections or reinfections for folks who have been vaccinated or previously infected. And then a variant of high consequence, I believe that that is a variant for which vaccines do not offer protection. But as of now, knock on wood, there have been no SARS-CoV-2 variants of high consequence.
Zoe Rothblatt 14:22
Yeah, thank God we have not heard that term flying around. I don’t think any of us can handle that emotionally. And then the big question at the end of it is, will there be more variants?
Steven Newmark 14:32
I know the answer to that one, too.
Zoe Rothblatt 14:34
Okay.
Steven Newmark 14:34
Yes, there will. Yes, there will. Yes, there will because nature is such that the winning variants are going to continue to be the ones that are able to evade, I’m gonna say, evade capture, and keep going. So they’re going to drown out the one that comes before it and the one that comes before that and so on and so forth. So as long as Coronavirus continues to spread, mutations will continue to happen. And the winners are going to be the variants that are most effective.
Zoe Rothblatt 14:58
What’s hopeful, though, is that each talked about this in an episode a few back, the virus wants to live on and it’s in its benefit not to kill the host. And that’s why they become less intense.
Steven Newmark 15:09
They become weaker. Very good point, let’s put a pin in this here and on a positive note. Number one, there will be more variants, but they are more likely to be less virulent. Number one. Number two, could even get better versions of vaccines that come out. And number three, as we continue to develop various therapeutics to combat it, once we get sick, we should be in an even better state as the months and years go on.
Zoe Rothblatt 15:30
That’s really comforting. Steven, I wanted to try something new this week with a listener question. We had a few similar questions come in and they went something like this. “I’ve had one or two doses of Evusheld and what now? Can I eat outside or inside without a mask? Can I visit my grandchildren? Can I go to concerts? There’s really no clear evidence, please advise.” So I thought maybe we can walk through this question, talk about how we would answer it. Of course, use our tagline we are not experts, but we do have some thoughts here.
Steven Newmark 16:04
We can never give specific medical advice, of course. But in terms of this question, look, it’s challenging navigating the changing guidelines, it is very challenging. And unfortunately, there is not a clear cut answer on how safe or risky various scenarios are.
Zoe Rothblatt 16:17
I 100% agree. It’s good to be asking the questions and looking at the scenario. Of course, number one, I always talk to my doctor. And when people ask questions like this, I always say you know, talk to your doctor first. They know you, your personal health history, your location, you know your day to day life, and they can give you informed medical advice. But otherwise, personally, when I think about a situation, I’m going to I ask myself a few questions. What safety precautions are in place at the event? Will there be distancing? Is it indoors, outdoors? I take a scan of the scenario, then I take a scan of the people. Do I know the people? Is that a close group of friends that I know their vaccine status? Do I know that they’ve been sort of just hanging out with the same group or at a large gathering? Maybe if they’ve been a large gathering, I don’t want to go near them. And then I think about, personally, what safety precautions do I have? I have my vaccines, I have my booster, I have my N95 mask. And I think about, you know, what can I bring to the table in that scenario. And then given all those, I decide if it’s something that I feel comfortable with.
Steven Newmark 17:22
I would say I’m the same way. I tell people to wear the N95 masks and try to avoid certain indoor situations. And yet I fully admit that I violate that myself at times. So I am not consistent. And you can call me out. And that’s the way it is. I would say I’ve sort of gotten to the point where I also believe that there is a health benefit to participating in certain activities that may be risky, a mental health benefit, if you will. I ride public transit, I fly on airplanes, occasionally, I do know somebody who flies on airplanes extensively, and wears the N95, from the moment they get into a taxi to the airport until the moment they land, doesn’t take it down to breathe for even a moment. I have not taken a long flight, but I’m planning on some. I can’t imagine not pulling it down for just a second to take a breath here and there.
Zoe Rothblatt 18:08
Yeah, and you know, staying hydrated is also really important on a plane. You can’t compromise so much of your health that you’re going to be in a bad way after it’s just how I looked at it.
Steven Newmark 18:17
Right. And I mentioned this on our last podcast, I’ve heard that the times to be most cautious are when boarding and deboarding an airplane because that’s when they turn the HEPA filters off. That’s when you’re really crunched in tight to your neighbors. So that is a time period in which I definitively keep the mask on very tight. I’m definitely less scared about going into supermarkets and things of that nature. I go to markets that are very large. I know that I’m in and out in less than 10 minutes at most supermarkets now. Maybe 15 minutes on a really bad day. So I feel less scared. I am wearing a mask of course, but I don’t feel nervous. The weather is better. So it’s easy to eat outdoors. If you’re going out for meals. That’s a saving grace too.
Zoe Rothblatt 18:57
I’ve been eating outdoors a lot. And it’s so nice to, you know, just get pampered. That mental break makes me forget about COVID for a little bit, which is really, really helpful.
Steven Newmark 19:08
But there are other things I still haven’t done. I still haven’t gone to a movie.
Zoe Rothblatt 19:11
Me neither, actually.
Steven Newmark 19:13
I did get tickets, God, I’m very New York right now, I got tickets to a Broadway show, which I haven’t seen in over two years.
Zoe Rothblatt 19:18
I think it’s just about how you’re prioritising your needs and your safety and determining what’s right for you. I’d say that the people asking these questions, you’re not alone. I find myself asking these questions a couple of times a week when things come up. And I really evaluate each scenario by itself and think about how I’m feeling, you know, what’s going to be most beneficial to me. And if I get to a place where I don’t feel comfortable, I leave. I’m not like chained to the place. You can always reevaluate as you go. And it’s hard that there’s no clear cut answers.
Steven Newmark 19:47
Well, I learned a lot today.
Zoe Rothblatt 19:49
I know me too. You share first.
Steven Newmark 19:51
I appreciate the work that you did in explaining the differences between variants, subvariants, mutations, and strains. And I did learn from that. So thank you very much.
Zoe Rothblatt 20:00
I learned from that too. And just doing the research and talking it out with you. It’s helpful. I guess my learning is that it’s helpful to really talk it out and be able to say it more than just read it.
Steven Newmark 20:12
Well, we hope that you learned something too. We’d love to hear from you about how you’re dealing with this phase of the pandemic. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 20:23
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 20:30
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 20:35
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 20:53
I’m Steven Newmark. We’ll see you next time.
Narrator 20:58
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 18- This Nerve-Wracking Time of COVID
Who doesn’t want to leave winter behind and enjoy life beyond COVID? But the truth is we’re living in a place in-between, eager to drop our guards and live life out in the open again but with the invisible threat of variants always looming nearby.
“I saw New York City has moved into the medium yellow risk category as (COVID) cases rise,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Heathy Living Foundation. “That sent off the little alarm bells in my head…it’s a little nerve wracking to be moving into this category.”
S3, Ep 18- This Nerve-Wracking Time of COVID
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
I saw New York City has moved into the medium yellow risk category as cases rise. That sort of sent off the little alarm bells in my head because we also know that people are testing at home. So cases are probably higher than we think. You may walk outside and everyone’s acting normal. It’s a little nerve wracking to be moving into this category.
Steven Newmark 00:30
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:40
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes listen to all of our great podcasts. We have so many to choose from.
Zoe Rothblatt 00:58
This week, we’ll give a shout out to our newest podcast called Wellness Evolution. It’s hosted by our colleagues, Danielle Ali and Angel Tapia. And it’s just this wonderful podcast bringing you diverse conversations about mental health, the wellness journey, and there’s also these great breathing exercises.
Steven Newmark 01:16
Yeah, it’s great to help you get through difficult times that we’re all feeling these days.
Zoe Rothblatt 01:20
Yes, and you can check them all out at ghlf.org/listen. Let’s start as we always do with a listener comment. Are you ready?
Steven Newmark 01:28
I am ready.
Zoe Rothblatt 01:30
This one is from Tamari95, who wrote, “The host provides so much relevant information. Thank you.”
Steven Newmark 01:36
We’re glad to hear that you’re finding it useful. And we’ll continue to do what we do. Thank you, Tamari.
Zoe Rothblatt 01:43
For this week, in this episode, I have a feeling we’re going to go on another rant. We’re in this uncertain period in between winter and you know, being bottled up in our houses and trying to let go of that as the nice spring air comes in. The city’s coming back to life where we are. And you know, I’m feeling hopeful. But we’re also in this weird in between period where cases are rising and how do we reconcile all that. But first, let’s take a look at the news of the week. The biggest news on my mind this week is that it’s Arthritis Awareness Month.
Steven Newmark 02:11
So that’s a clue in to say that it is May, and during the month of May last year, we had a campaign called We’re Still Invisible. Especially because of COVID, it feels like we’re kind of having the same conversation.
Zoe Rothblatt 02:24
People are going out about life and feeling comfortable with the virus. And I feel like we keep crying out that our life matters. Arthritis is sometimes visible, I’ll say that. But a lot of times a lot of the things we feel are invisible. And I think we’ve become more invisible during COVID. And it’s just hard to say that a year later, you know, another year passes and we’re still fighting and having the same crying out.
Steven Newmark 02:47
Absolutely. On a personal note, I find it is always helpful to advocate. I think it helps mentally, it makes you feel like you’re doing something, and it’s better than sitting around and brooding and being depressed. And we have a few ways that you could help advocate for yourself and for others this month. Number one, you could share your experience with those around you on social media. Number two, you can join our 50 State Network to take action to improve health policy. And number three, you can contact your elected officials and share your story. And number four, you can participate in research through GHLF’s Arthritis Power.
Zoe Rothblatt 03:20
You mentioned our 50 State Network, you know, if people want to join and don’t know where to get started, definitely reach out to us at [email protected] and we can help you get started.
Steven Newmark 03:30
And this is the month to do it.
Zoe Rothblatt 03:31
Yeah, this is. What else is in the news this week? I saw a lot of vaccine updates. It’s really focused on children. And I’m interested to hear your perspective as a parent. So Pfizer recently asked FDA to authorize a third dose of its COVID vaccine for children ages 5 to 11. So this is about a booster and the booster is already authorized for teenagers 12 to 15. That happened in January. So now they’re looking at this younger age group. Then two other updates; Pfizer and Moderna are both filing with the FDA to get Emergency Use Authorization for vaccines in children. Pfizer hopes that they could do 3 extra small doses in children under 5 and Moderna is hope that they can provide a 2 low dose shot to protect children under 6. Okay, that was a mouthful. What are you thinking hearing all this?
Steven Newmark 04:20
I relate to that with the masks. I’m like I don’t really care what kind of mask people are wearing as long as there’s something there It’s great news. In terms of the children 5 to 11, there may be an authorization for boosters. And in terms of the children under 6, we may get our first authorization for actual vaccines. So let’s take it one at a time. I guess we’ll start with the youngers because that’s probably the bigger news and frankly, the more important because they are still the only age class that is ineligible for vaccines. There are a lot of anxious parents out there who want their kids to have the vaccine. I know parents, frankly, who don’t even care what the efficacy level is. It’s almost like I don’t care how effective it is. If it’s barely effective, I just want something. Right. And I think that there’s that feeling out there for a lot of parents. I was just saying last night to my wife, the one saving grace from this whole pandemic, if there is a saving grace from COVID, is that mercifully, it has not attacked children the way it has attacked the adult population. I’m grateful that vaccines are coming. But I also don’t have a child under the age of 6, so my anxiety level is probably not the same as theirs. So being a step removed from it, I’m a little all over the place right now. But I’m happy it’s coming. But I was not freaked out about it the way some parents were and seeing those parents, I’m happy for them. I’m happy for society that finally we can get the vaccines. The one thing that does give me pause, I don’t want to pause, I want this authorization to happen. But I am not nervous about the number of children who will be taking it. We see the numbers for the ages 5 to 11, it’s lower than I think it should be. So I’m even more nervous for the children under age 6. So we’ll see what happens.
Zoe Rothblatt 05:54
I’m not in parents circles, so it’s interesting to hear the conversations that you’re a part of and you’re hearing. I guess, from my personal experience, being someone with underlying conditions, who’s immunocompromised, my heart goes out to the children who are living with conditions, you know, it’s Arthritis Awareness Month, I think a really big misconception is that young people don’t get arthritis, young people don’t get chronic diseases. And there are many children out there that are scared, their parents are worried for them. I hope this brings some light. And you know, like we mentioned on a recent episode, there are treatments available to children if they do get COVID. So you know, this is just like another step in the right direction.
Steven Newmark 06:31
And I guess if my excitement is tempered, it’s probably because I was excited in February for the kids. And then when it didn’t happen, it was sort of a gut punch. It’s like, oh, gosh, what is going on? In baseball, I’m a Mets fan. So I’m never able to actually celebrate ever until maybe after the last out of a World Series, which I likely will never see. I can’t feel comfortable until what happens.
Zoe Rothblatt 07:04
Summers coming up, we have a lot of long weekends and camp. So I hope that we can get these approved so, you know, kids can enjoy their summer.
Steven Newmark 07:12
Yeah. And getting back to the, I guess we’ll call them the older kids, the 5 to 11 boosters, that I’m very excited for, if for nothing else, and I’m speaking not as an expert, but as somebody who reads excessively on this, I worry, not just for the current Omicron because I’m hopeful that by the time the authorization comes out, I’m hopeful that the BA.2 may be tamped down, we may be in the summer where where there’s more outdoor activities and less indoor activities and less, some less transmission. But I have this anxiety that in the fall, there’s going to become another variant. And as children reenter school, as those of us who have been outdoors or had been outdoors over the summer start to come back inside, this spread is going to become higher, and I worry about the waning efficacy of the vaccines for children. So a third dose coming in the fall, I think would be great to reboost the antibodies.
Zoe Rothblatt 07:59
And on the topic of a booster conversation, I know immunocompromised people, I’ve got a fourth shot, I believe people over 50 are eligible for fourth shot and I’m wondering about the waning immunity. I wonder when we’re going to see a fourth shot for the general population and what the data is going to look like as we get these more variants. You know, we’re now in BA.2.1- I don’t even know what they’re called anymore.
Steven Newmark 08:25
BA.2.2115.
Zoe Rothblatt 08:26
This morning, I opened my news, I saw BA.4 and 5.
Steven Newmark 08:29
Yeah,.
Zoe Rothblatt 08:29
I didn’t know those existed yet. And it seems like the variants are just rapidly coming.
Steven Newmark 08:34
My one area of hope, again, not as an expert, at least the variants are sub lineages of the same Omicron variant. So hopefully, those who have been infected have some level of protection, they say reinfections, even with the new variants is quite low. So that’s one good sign. I’m more worried if we get an actual new variant, not one of these BA sub Omircron variants. But you know, another Delta type variant. Not to mention, if we get something that actually is more damaging, that would be a horrific.
Zoe Rothblatt 09:01
That’s a good distinction.
Steven Newmark 09:03
In terms of the fourth dose, we’ve said for quite a while I’m expecting this to be an annual thing, every fall similar to a flu vaccine gotta get your antibodies up. I think it seems as though they’re testing and there are worries that the fourth vaccine, it was a study out of Israel that showed that the fourth vaccine, the antibodies, unfortunately did not last, They wane very quickly. So I think we’ll have to continue to see what the studies show in regards to a fourth vaccine for the general population. I know I was talking to my parents, and they were talking about getting the fourth shot in discussing it with them. We came to the decision to plan your fourth shot around a specific event. My parents would barely leave the house. But let’s say they have an event to go to on July 1. I said let’s try to plan back from that so your protection is at its peak when you’re doing your event.
Zoe Rothblatt 09:48
That’s great advice to think about planning and your protection.
Steven Newmark 09:52
But unfortunate because then you can’t do an event in August.
Zoe Rothblatt 09:54
Yeah, talk to your doctor of course about what’s best but people with chronic illness are always planning and calculating, you know, if I take a shower now will I have the energy to go do this. And it’s funny just to have that conversation in all things related to health. I was also reading that experts are moving away from this term fully vaccinated and using up to date, which means getting a booster when eligible. Because what is fully vaccinated? There’s different shots available to different people and up to date is just a more current language to use. And I kind of liked that.
Steven Newmark 10:32
Oh, yeah. Is that the language we use for other vaccinations?
Zoe Rothblatt 10:35
I think so. I feel like I go to my primary care and they say, “Are you up to date? Let’s see if you’re up to date on all your vaccines.”
Steven Newmark 10:41
Right. They don’t say, “Are you fully vaccinated?” It actually doesn’t make sense if you think about it.
Zoe Rothblatt 10:45
Yeah, for the puppy too. “Is he up to date on all the shots?”
Steven Newmark 10:48
Right, right, right. “Are you up to date?”
Zoe Rothblatt 10:50
I guess this is a good opportunity to say that we talk a lot about the COVID vaccine. But vaccines in general are just so important. And I didn’t even realize that I was due for some boosters of vaccines I got as a child. And that was pretty illuminating in my recent appointment. And like I just realized how much there is to keep track of and advocate and keep your records in a good spot that you can show your doctor and have these conversations about what you need to do.
Steven Newmark 11:15
Yeah, one thing I would also advocate for, I think I could say I’m an expert in this area, at least if nothing else, is it’s always good to have your records in one place. I’ve always been very vigilant about getting all of my records to my primary care doctor. No matter how many specialists I go visit, I always ask them to send it to my primary care doctor, in case of emergency, in case of whatever. I want my records to be in one place. They’re electronic. So if I’m ever traveling, and I need to access my records, they’re in one place. So it’s something I would always advocate for. And when it came to the vaccines I made sure to do that as well. I am definitely surprised at how quickly the world has moved away from the vaccinations requirement. I say that I am planning to go to a big arthritis conference in Europe at the end of the month. And I was surprised I don’t need to show any proof of vaccinations to get into Europe. Nor do I need to show any proof of vaccinations to return to the United States. I do have to show proof of a negative test within one day of travel to get into the United States. But the vaccines, I have laminated all my cards, I’ve got photocopies, I’ve got everything on my phone. But it seems as though the proof of vaccinations is not a thing anymore. That didn’t last.
Zoe Rothblatt 12:19
So speaking of travel, I saw that the CDC still staying firm and encouraging masks on travel regardless of what the federal judge ruled, which I thought was interesting that now a little time has passed, but the CDC is still coming out and saying.
Steven Newmark 12:33
Maybe they listened to The Health Advocates, because we’ve been saying that too. It’s your personal decision. But my personal decision is to keep wearing my N95 mask when I’m anywhere indoors with other folks that I don’t know. And definitely on a plane.
Zoe Rothblatt 12:46
Yeah.
Steven Newmark 12:47
I’ll give you another public service announcement that I found. It is difficult to wear a mask, I understand, for a very long flight. Including the airport time, time in a taxi, and all that stuff waiting to get on. I did hear that the absolute most important time to wear the mask is when boarding and when de-boarding a plane. Because when you’re in the air, not that it’s particularly safe, per se, but they are running the HEPA filters when you’re in the air. But when you’re boarding you’re you’re scrunched together, you’re tight together and the filters are not running. So that is really the time that you definitively want to be in a mask. If you ever have the sense that I want to just pull down the mouse for a second, take a breath. That’s not the time to do it. So just a little word of advice that I heard.
Zoe Rothblatt 13:27
Yeah, the more you know, that’s a really great tip. Thanks for sharing that. The last thing on my mind is that I saw in New York City, which is where we are, has moved into the medium yellow risk category as cases rise. And that sort of sent off like a little alarm bells in my head because we also know that people are testing at home. So cases are probably higher than we think. You may walk outside and everyone’s acting normal. It’s a little nerve wracking to be moving into this category.
Steven Newmark 13:53
Yeah, not to mention you move into a category that doesn’t do anything, right. I mean, the mayor said, “Yeah, we’re in the category.” What does it mean? J”ust means we’re in a new category.”
Zoe Rothblatt 14:01
Yeah, they’re raising this risk category. But there’s no direction for how we should behave as a result. The public health response feels a bit lacking to me.
Steven Newmark 14:09
I totally agree.
Zoe Rothblatt 14:10
We know what to do for ourselves. But it would be nice if, as a community, we were all doing it together. Because with this virus, you do have to be in it together. It’s not just about individual behaviors.
Steven Newmark 14:20
Hopefully cases will start to go down.
Zoe Rothblatt 14:22
Another week, another rant from us.
Steven Newmark 14:24
Yeah,
Zoe Rothblatt 14:25
Steven, that brings us to the close of our show.
Steven Newmark 14:27
Let’s be positive, let’s be positive.
Zoe Rothblatt 14:29
Let’s be positive. What did you learn about today?
Steven Newmark 14:32
I learned the general use of the phrase with vaccinations should probably not be fully vaccinated, but rather, “Are you up to date?” And I think that is a better way of asking it. Are you up to date.
Zoe Rothblatt 14:43
Agreed, and I learned from you about the conversation that parents are having about children and the vaccines and the hope that there is.
Steven Newmark 14:50
Well, we’ll have you on something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Better yet include a short video or audio clip.
Zoe Rothblatt 15:02
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 15:09
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:14
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 15:33
I’m Steven Newmark. We’ll see you next time.
Narrator 15:38
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 17- “We Grieve Who We Once Were”
The majority of Americans are now believed to have had COVID. So as communities lower their guard, the strategy to fight the virus is as much rooted in vaccines and masking as it is with new drugs that are being approved. But for our immunocompromised community, the fear of contracting COVID keeps them isolated while they long for that time when they were once free from chronic illness.
“We’re all just one chronic disease away from being chronically ill,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Heathy Living Foundation. “I was once young and healthy before I got the diagnosis. We grieve who we once were and what we used to be able to do.”
S3, Ep 17- "We Grieve Who We Once Were"
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
We’re all just one chronic disease away from being chronically ill. You know, I was once young and healthy before I got the diagnosis. We grieve who we once were and what we used to be able to do. It’s an interesting concept to think of yourself in a certain way. And then one day you get a diagnosis and it’s not that
Steven Newmark 00:28
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:38
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:42
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:57
And you can check them all out at ghlf.org/listen. Big shout out this week to Healthcare Matters. Our colleagues, Conner and Robert recently did a two episode special on non-medical switching on their show and the impact it has on patients.
Steven Newmark 01:11
And it’s a great listen for those who want a deeper dive on policy topics.
Zoe Rothblatt 01:15
Okay, Steven, let’s start as we always do, with a listener comment. Are you ready to hear it?
Steven Newmark 01:20
I am ready.
Zoe Rothblatt 01:21
I really smiled when I saw this one. Christina wrote, “This is my other can’t miss health podcast. If you have chronic illness or illnesses in your household, you might find this encouraging and helpful.”
Steven Newmark 01:32
Wow. Well, I got to know what the other other can’t miss healthcare podcast is. Please let us know what the other one is because I’ll started listening. And thank you for your comment.
Zoe Rothblatt 01:41
In healthcare news, the White House announced plans to expand availability of the COVID drug Paxlovid.
Steven Newmark 01:48
Yes, this is the new push from the White House to get Paxlovid, a drug which reduces COVID hospitalizations by 90%, into the hands of more Americans.
Zoe Rothblatt 01:56
And this is especially important because for our community, who is at high risk for, you know, severe case of COVID and complications, getting access to drugs like this is important to stop the infection early on. This drug is authorized for use in patients 12 years of age and older who test positive and are at high risk. This expansion is really targeted towards our community, which is nice because we’ve been talking about feeling left behind. So this is really encouraging.
Steven Newmark 02:24
It’s definitely important for keeping folks out of the hospital, as you said. It reminds me, I am not a medical expert so this is not a medical comparison, but it reminds me a little bit of Tamiflu. It’s a drug that if you take it within the first five days of testing positive or actually being infected with COVID, it will help tamp down the symptoms essentially, and thus make things better to bear if you will, during the course of your illness.
Zoe Rothblatt 02:47
I feel really grateful that they’re going to expand this availability. I know the rollout has been really slow and pharmacies haven’t really had stock of the drug. And physicians have been hesitant to prescribe it because they know there isn’t a large supply. So it feels really good to know that we’ll have an extra tool in our kit as a defense against COVID.
Steven Newmark 03:05
They’re pushing an arsenal as well where you can actually get tested at a pharmacy and you’ll be able to get a supply of Paxlovid on the spot. So you won’t have to take the two step process of going to a doctor to get the prescription, have it called in, and then picking it up. So that already exists. But it’s just not as widespread as probably it should be.
Zoe Rothblatt 03:24
That’s a really great program. All of our spoony listeners know how frustrating it is to go through the process of getting medication and how important early treatment is. So to have it in one stop shop, we know how valuable that is. Absolutely. And hopefully the supply will increase as well. Because one issue is, as you mentioned, doctors are reluctant, you know. They have to go through a whole checklist to see whether you’re eligible. And hopefully it will become more akin, if you will, to Tamiflu. They don’t even have to check to see whether who is eligible. If you’ve tested positive, get yourself on it within the first five days, and with the illness not quite as bad as it might otherwise have been. In other treatment news, I saw that the Food and Drug Administration, the FDA, granted full approval for the COVID treatment called remdesivir for young kids.
Steven Newmark 04:13
Yeah, this is great, too, because this is a first treatment that’s available for children. And that includes children under five, who are as we all know, are ineligible for vaccines at the moment. So this is another tool that will help our youngest.
Zoe Rothblatt 04:26
I saw that it’s approved for children over 28 days of age, which is really remarkable to think that for new parents who are really really worried and concerned about their kids who don’t have protection that we now have this.
Steven Newmark 04:39
Absolutely. Look, we’re starting to talk about the idea that COVID is out there, it has infected a lot of people, the chances of avoiding COVID fully are just diminishing by the day. The new strains are getting more and more contagious. So, you know, the idea of fully avoiding it, as I’ve said before, unless you want to be a hermit in a cabin somewhere, it’s going to get more and more difficult to avoid it. So we need to rely on things on the back end to help keep us safe, should something happen.
Zoe Rothblatt 05:06
I’m hearing again of people left and right testing positive. It’s getting to that point again, where I’m getting really nervous again. Nobody in my building is wearing masks. I find myself in the elevator, you know, it’s a cramped space. And it’s tough when you’re looking at people, and they’re not in a mask. Cases are going up and it’s hard. But I’m glad that in our news recap, we’re talking about these treatments and advances that are happening.
Steven Newmark 05:31
Yeah, absolutely. We have, if I dare say, as a non expert, crossed the threshold, we may have crossed it a long time ago, when the idea of eradicating COVID is just not in our sights.
Zoe Rothblatt 05:43
I know what a dream we had. Let’s go back to those good days.
Steven Newmark 05:47
Yeah, it was this thought flatten the curve. Remember the olden days?
Zoe Rothblatt 05:50
Yeah, two weeks, we’ll be back in two weeks.
Steven Newmark 05:53
But even even beyond that, when the vaccines first came out, when we started masking, there was definitely a thought that we would get herd immunity with a combination of vaccines and folks who have already been sick. The CDC, just this week, also announced that they believe that 60% of Americans have been infected. And even more jarring, 75% of children have been infected with COVID, which is incredible. And I got to think off the top of my head, that they’re undercounting some of the folks who were asymptomatic. Oh, and that was before the BA variants, the various BA variants. This is from February of 2022. And as you said, we’re starting to hear about folks who are getting infected who had not previously tested positive. So you’ve got to figure that the real number is closer to let’s say 66%. So that’s two out of every three Americans have been infected at some point with, at least once, with COVID, which is pretty wild.
Zoe Rothblatt 06:48
Also, a lot of people are testing at home on rapid tests, which isn’t documented. So all those cases are unaccounted for.
Steven Newmark 06:54
Exactly. Thankfully, thankfully, thankfully, because of treatments that are being developed and are out there now, the hospitalization rates are stable, they’re actually going down. We’re certainly in the phase where we’re going to have to start to say herd immunity, that is not going to happen, or it’s going to be very difficult to get. So we have to start to think how are we going to deal with this. You know, I think for those of us who are immunocompromised, a lot of it is seeing the numbers, as unreliable as they may be, we have to see when the numbers are high, when the numbers are low, how we react. Maybe we could afford to be a little less cautious when the numbers are extremely low. And we know to take extra caution when the numbers start to increase.
Zoe Rothblatt 07:31
Let’s back it up. You mentioned herd immunity. Also people may know it as community immunity. This is when a large portion of the population and area is immune to a specific disease, mostly attributed to vaccination rates. And the idea is that when people are protected, it helps protect the vulnerable who can’t get a vaccine. We know some in our community are unable to get the vaccine, you know, because of various, you know, allergic reactions or whatnot. We talked about children, herd immunity is important for children who can’t get vaccinated. So you’re saying and you know, what I’m thinking and experts are thing is that we can’t get to this point with COVID.
Steven Newmark 08:06
There was a point where several countries at the beginning believed that the best path through the crisis was to slow that controlled spread of infections through the population, particularly the young and the healthy, to achieve herd immunity to best protect the more vulnerable populations
Zoe Rothblatt 08:20
That’s true. That’s a good point. I was talking to my own doctor about COVID. He said, “You know, don’t don’t forget, you’re young.” Like, am I? The definition of young is really starting to be stretched a little bit if I’m in that category. But I think generally the idea at the beginning voice was to let it spread, at least in certain countries. And let’s just say it didn’t work. We’re all just one chronic disease away from being chronically ill, you know, I was once young and healthy before I got the diagnosis. I think probably all our community, we grieve who we once were, and what we used to be able to do. And it’s an interesting concept to think of yourself in a certain way. And then one day you get a diagnosis and it’s not that I guess maybe it’s helpful to think of an example of where we did achieve herd immunity and how that happened. I think a really common one is the measles. Measles spreads through the air. It’s really contagious. And for the most part, the US has eliminated transmission and kept measles from circulating. And we attribute this to three things. One, we have an effective vaccine. Two, the measles virus doesn’t really change or mutate in significant ways. And three, we have a really successful childhood vaccination campaign. So with all those combined, we’re really not seeing cases of the measles.
Steven Newmark 09:35
That’s absolutely right. And each year, by the way, a certain number of cases do arise in the United States when travelers bring it into the country. But it has never gained a foothold here, or regained a foothold here, and continue to circulate because we have such strong community level protection.
Zoe Rothblatt 09:48
What’s interesting is the World Health Organization did issue a warning in 2019 that measles could become endemic again as a result of vaccine hesitancy. So you know, just having that really good childhood vaccine campaign and also a really effective vaccine is so important for keeping this at bay. And I guess, often we don’t really think about how good we have it until it’s gone. And we talked about this with COVID. This virus is not spreading because we’ve been so successful at it. So let’s keep that up.
Steven Newmark 10:17
I should just point out some differences between the measles vaccine and the COVID vaccine. The measles vaccine creates sterilizing immunity, the COVID vaccines do not do this. While vaccination reduces the chances that you might pass COVID on to someone else, contact tracing studies have shown that it still happens. So that is a major difference between the two vaccines.
Zoe Rothblatt 10:36
Yeah, that’s a really good point. Also, while the COVID vaccines don’t necessarily prevent transmission, they are really effective at reducing severe illness and hospitalizations and deaths, which to me, when I think about what I want a vaccine to do, it’s exactly that.
Steven Newmark 10:52
Yeah, I don’t want to go to the hospital. Or worse. You know, it’s interesting, just in talking about herd immunity and where we were at the beginning and the idea that okay, if we can get enough folks vaccinated, if enough folks, unfortunately, get infected and survive, they’ll have some immunity as well. It was that thought of getting to this herd immunity. It just makes me so angry about how the early days of the pandemic were handled. You can’t go back in time, but I think about H1N1, Ebola, swine flu, all the viruses that could have had a catastrophic impact globally, and these were all very relatively recent viruses and the way they were handled in each case, the world was alerted immediately. The world went on a quasi, not lockdown, but high alert at the airports, at incoming ports of call. In each case, we were able to tamp it down. I remember I personally was very active with Ebola in New York City and we had a case and the person was isolated and it never spread. I know you could say you’re comparing apples to oranges. COVID is perhaps more virulent, perhaps more transmissible, but it is interesting. And it scares me also for what could potentially come next. If we don’t learn from the mistakes that were made here.
Zoe Rothblatt 12:00
That also reminds me of when Zika was going around and how scary that was. And that, similar to COVID, you’re outside and you’re sort of trying to protect yourself and you don’t really know where it’s around. I think Ebola is way more symptomatic. And I just remember this fear of going outside during Zika. What are we learning from these crisises? Are we prepared for the next pandemic? I don’t know.
Steven Newmark 12:24
I know and probably at least in our country, worst of all, is incredibly our system of public health is perhaps weaker than it’s ever been. We spoke last week about the federal judge’s ruling that curtail the powers of the CDC to control and prevent diseases. So who knows whether it’s going to leave us the next time something arises or just in COVID, the next variant.
Zoe Rothblatt 12:45
You know, if we’re not going to reach herd immunity, and that’s likely it, what hope is there, what can we do?
Steven Newmark 12:51
Let’s end on a hopeful note. Number one, we know how to protect ourselves. When case loads are high in the area, and that’s a combination of official numbers, anecdotal stories, you hear from friends and family about cases rising. Perhaps wastewater reports, if you live in an area that’s testing wastewater. When cases are high, you know, to be safer. You know to say, “Look, I’m gonna stay in a lot more. Maybe I’ll even stay in 100% of the time have groceries delivered, I’ll go back to what I need to do,” if you’re able to do that. Number two is you know, the N95 masks, the KN94 masks, you know to mask up, you know to be extra safe about masking up. Number three, keep focused on the therapeutics that are available. If you suspect that you may have COVID, if you suspect that you may have interacted with somebody that is positive, test as often as you can. When you’re not testing, when you’re staying at home and feeling safe, just keep collecting as many free tests as you can. Keep stocking out because when you need to test, you need to test and as soon as you test positive, make sure you have a primary care doctor or whomever your go to doctor is, is ready to supply you with the needed therapeutics very quickly. One last thing, be healthy generally, you know. It’s always a good thing to live a healthy lifestyle.
Zoe Rothblatt 14:03
Yeah, that’s my game. Yes, be healthy. I love that.
Steven Newmark 14:06
Yeah. It’s like having an emergency plan, like what do you do when an emergency hits.
Zoe Rothblatt 14:11
Physically and mentally, you know, take care of all aspects of your well being. And I would also add just doing a little research. We talked about some of the new therapeutics out, it’s really good to know beforehand, before you’re in the situation so you know exactly what your doctor is talking about what you could take and just being really prepared in that sense that you have the knowledge going in. It makes it a lot easier to tackle the situation, when/if it comes. Hopefully, you don’t end up in that situation, but we really don’t know. Okay, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 14:43
I learned from you about the remdesivir approval for children 12 and under. That’s great news. So I’m happy to hear that.
Zoe Rothblatt 14:50
And it was really interesting for me to think about herd immunity and how we’ve achieved it with other vaccines and the difference that you mentioned between the measles vaccine and the COVID vaccine.
Steven Newmark 15:02
Well, we hope that our listeners learn something too. We’d love to hear from you about your advocacy stories. Send you an email to [email protected] Or better yet include a short video or audio clip.
Zoe Rothblatt 15:13
And who knows, whatever you shared may be included in our listener feedback portion of future episodes.
Steven Newmark 15:20
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:25
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll have more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 15:43
I’m Steven Newmark. We’ll see you next time.
Narrator 15:49
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 16- “Wear the Damn Mask”
Not everyone is cheering the news that the mask mandate on planes and trains has ended. While the Justice Department is appealing that ruling, those most susceptible to contracting COVID fear for their health and safety. In this episode, our hosts can’t contain their frustration and anger at those adults unwilling to wear masks for the common good.
“I don’t understand all these adults that act like children. For the good of people who are suffering; from immunocompromised, elderly, or whatever the case may be, just like wear the damn mask for a little bit longer,” says Steven Newmark, Director of Policy at the Global Heathy Living Foundation.
S3, Ep 16 - "Wear the Damn Mask"
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:09
I don’t understand all these adults that act like children. For the good of people who are suffering; from immunocompromised, elderly, or whatever the case may be, just like wear the damn mask for a little bit longer. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:32
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:37
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:50
And an exciting new season two of Talking Head Pain just dropped. It’s really great.
Steven Newmark 00:56
Talking Head Pain is hosted by Joe Coe, who we’ve had on The Health Advocates before. And he does such a great job at sharing people’s migraine stories.
Zoe Rothblatt 01:03
And you can check them all out at ghlf.org/listen. So Steven, let’s start as we always do with a listener comment. Are you ready?
Steven Newmark 01:12
I am ready.
Zoe Rothblatt 01:13
This one is from slefko16, who wrote, “This podcast is truly awesome. It’s informative and super helpful.”
Steven Newmark 01:19
Well, you’re awesome too, slefko16. Thank you for the comment. We appreciate it.
Zoe Rothblatt 01:25
Steven, it’s a big week for healthcare news, we got a lot on our minds. Why don’t you kick us off.
Steven Newmark 01:29
Sure. You’ve probably heard that the mask mandate is going away, the federal mask mandate on transportation for flights, trains. And apparently the Centers for Disease Control and Prevention, according to one judge, does not have the actual authority to control disease prevention in the United States. So we will see what this means. We will see if there is an appeal. But as of our recording right now, there is no longer a mask mandate and mask requirement on travel.
Zoe Rothblatt 01:55
Make that make sense. The CDC doesn’t have the authority over disease prevention. That’s a oxymoron there.
Steven Newmark 02:03
Right, right. I definitely find myself getting very frustrated. I feel like, I feel like we’re in like a video game or something where each time we get to another level, it just gets harder and harder and harder. We started out with the first wave two years ago. And we all huddled inside we said this is how we’re going to protect ourselves. We got through that, they came up with the vaccines. The vaccines were great. It turns out they weren’t the lifesavers we had anticipated they might be but they’re still helpful.
Zoe Rothblatt 02:28
Like at that point. We are all in it together.
Steven Newmark 02:30
Absolutely.
Zoe Rothblatt 02:31
In that first wave, we were all, you know, in the house making banana bread, doing the Tik Tok dances. Like everyone was doing the same schtick day after day and we were just in it together.
Steven Newmark 02:40
Totally. So then all of a sudden comes this thing called Delta. Things are a little scarier out there. It’s like oh my gosh, this is happening again. Okay, but we learned a lot more about the masks. Maybe get stronger masks, better masks, the N95s. Then it gets even scarier. We’ve got Omicron that comes out this winter, the rates are going through the roof again, because this thing can evade vaccines, whatever the heck it does, we’re hunkered down for the most part. And now we’ve got another one. It’s like we’re on another level. There’s these variants, the BA.2 there’s another variant BA.12, BA whatever, there’s a lot of B variants out there. But at the same time we’re taking off our armor. We’re telling people, “Don’t bother masking, don’t do whatever. And it’s a personal decision. So yeah, if you want to go out and wear an N95 mask all the time, 24 hours a day, and be super safe. Go live in a cabin somewhere sure that’s your decision.” But it’s essentially saying to folks who do want to live safely who are immunocompromised, elderly, or whatever the case may be, “You’re on your own,” and it just feels so unfair. It’s like just going to be another level. When is it going to end? I’m frustrated. Sorry.
Zoe Rothblatt 03:41
I know, Steven. All the lessons feel like they’ve been unlearned by everybody, all the quote unquote healthy people out there that don’t seem to care and they’ve unlearned all the lessons about being in it together and protecting each other. I heard that the news came out that face coverings no longer are required while flights were in air.
Pilot 03:59
And I just checked with the company. The Delta position is masks will be optional this evening for all crew and passengers as well. So it is cause to celebrate, for those who want to wear masks please feel free to.
Zoe Rothblatt 04:13
They started cheering, ripping them off, celebrating
Pilot 04:16
It is optional and that way we can alleviate any stress and discomfort. Thank you very much.
Zoe Rothblatt 04:22
The source of celebration was, “We’ve been on these flights in tight air with face coverings and we’re so uncomfortable. So thank God it’s off.” And I’m like you could wear a face covering. People have serious illnesses and they’re worried about life threatening complications, and you’re just like a little bit uncomfortable. It makes my heart break that that’s where society is on both spectrums.
Steven Newmark 04:44
I don’t understand how all these adults that act like children and maybe it’s like a society thing. Just on a quick side note, I don’t know about you, when I ride public transportation in New York City now, there’s this new thing where people use their phones as if they are personal television sets and they hold them and they do not use headphones, and they run through Tik Tok all day long. I noticed that I was in a doctor’s office. And people were sitting there watching. I’m like, come on, like you can’t spend $2 on a cheap set of headset like what? Like, do you not realize what you’re doing is rude. And I translate it to what we’re talking about with the masks, I see so many adults who are just like, “I just can’t wear it anymore. I just can’t, I can’t be bothered to put a piece of cloth over my face.” Meanwhile, anecdotally at least, I see children and actual children who don’t complain about it, who wear it without complaining. So what is with the adults who are so immature that for the good of people who are suffering, just like wear the damn mask for a little bit longer. I understand when the cases are extremely low, when we’re in a dip, totally take them off. I totally get that. But we’re in this stage right now where it’s like Omicron part two, which is the B variants and they seem to be pretty transmissible. So it’s basically saying, “Yeah, live your own life, live your own life, great. If you’re immunocompromised, that means, you know, don’t leave your house or barely leave your house and make sure you’re wear N95s and face masks and whatever.
Zoe Rothblatt 06:00
Also for me, you know, if I’m outside, I’m not necessarily wearing a mask, and I make decisions to go inside and put on the mask. And this is like the ultimate inside on transportation. Windows aren’t really open, you’re in this tight incubator close to people. And to say that on like the ultimate inside scenario, you don’t have to wear masks. What does that say for everything else? I’m worried about going in the supermarket now. How can I expect anyone to wear masks there if you don’t have to wear it in this like tight enclosed space.
Steven Newmark 06:29
I know. It’s very frustrating.
Zoe Rothblatt 06:31
You know, at a quick glance, I saw major airlines make these statements that they prioritize health and safety and still encourage masks. And you know, I just want to say I agree with that. And while it may be just statements coming out from the airlines, and who knows what we’ll see, I definitely, you know, want to tell our listeners if you feel uncomfortable, a mask mandate removal doesn’t mean you don’t have to go maskless. You still can wear them and just wear it when you feel like you need to and want to.
Steven Newmark 06:57
Obviously we encourage everyone to continue wearing masks who feel based on your level of safety and comfort in particular the N95s and the KN94s and top quality masks. You know the truth is when you tell people it’s a choice, and the majority of people decide to take the masks off becomes a societal pressure to not wear the mask. And that starts to spread throughout society. So we’ll see what comes of it. Knock on wood. We’re hopeful that this new variant won’t spread. And I will just add that the White House is reviewing, as of our recording, and reviewing the court’s ruling and the Justice Department will decide whether it will appeal. This decision is at odds with the CDC who had recommended its order for passengers to wear face coverings be extended.
Zoe Rothblatt 07:36
We know this brings a lot of concern to our community. So just know we understand and we’ll keep talking about it.
Steven Newmark 07:46
We also have some GHLF news to report on. We have the results of our latest quick poll from our COVID-19 Patient Support Program.
Zoe Rothblatt 07:53
And we asked our community if they’ve been infected with COVID since being vaccinated and, you know, if so what was their experience like?
Steven Newmark 08:00
And the poll revealed that 20% said that they got COVID. This included fatigue, headache, and sinus congestion were the most common conditions.
Zoe Rothblatt 08:06
I found this really interesting because I think a real fear is just wondering what COVID will feel like for you if you’re immunocompromised. I thankfully have not got it yet. I hope I’m not jinxing myself and you know, yeah, exactly. Thank you, everybody, all our listeners, please knock for me and you and all our family and friends. But, you know, it’s becoming more common to get as new variants emerge. So just to have data like this about what it actually feels like and, you know, what symptoms to expect, how long they last, what it stopped you from doing just makes me feel so much more comforted.
Steven Newmark 08:38
Yeah, I definitely think there’s an aspect of this of the the anticipation of getting something. I was talking about it before with this Omicron. Omicron is more transmissible than Delta. Now they’ve got the subvariant, which is more transmissible than the original Omicron and they got these two others that are even more transmissible. That’s like how much more transmissible can it be? What does it mean? Like if you look at somebody with COVID, you’re going to get COVID? So I think that there’s this anticipation that is fueling a lot of anxiety. And from the free response section on our poll, it was clear that our community is grateful for the COVID vaccine. And they attribute that to their relatively mild infections.
Zoe Rothblatt 09:12
Of course, I just have to say it isn’t mild for everyone.
Steven Newmark 09:15
Absolutely. Absolutely.
Zoe Rothblatt 09:16
Many people with underlying conditions are at risk for severe COVID and complications. But it just does make me feel better to see this poll and see that the vaccines are protecting us. You know, we have our own GHLF data to say the vaccines are doing good things.
Steven Newmark 09:31
Absolutely. Also in the news, the FDA authorized the first COVID breatha- breath test, I was about to call it a breathalyzer. We’ll call it a breathalyzer. So you can get results in less than three minutes. That would be great. Particularly if it’s something that used a lot. Three minutes, you’re in and out, just your breath seems pretty easy.
Zoe Rothblatt 09:47
I know. Imagine like all the appointments they could slot it in because you’re not waiting the 15 minutes. So, I know such an issue was the long lines like maybe those could be shortened and more people can have access to this test because it’s shorter.
Steven Newmark 10:00
Yeah, and depending on the cost of these tests, could you imagine going to a wedding and being told, “Okay, we’re just going to do quick three minute tests. We have a ton of tests, everyone could test at the same time. It should only take like 15-20 minutes to get everyone tested.” Then you could walk in, I mean, talk about a level of comfort,
Zoe Rothblatt 10:14
Right? This just sounds so futuristic to me. I feel like every time we have like a new COVID innovation, we’re like, whoa, we’re in the future.
Steven Newmark 10:21
We’re in the future. We are. We’re beyond the future. We have computers in our pockets now, so.
Zoe Rothblatt 10:26
Yeah. It’s really cool to see, you know, this rapid innovation during COVID. And that it keeps happening. And we talked about it with the RNA technology, just getting this new technology and seeing what it could do for healthcare and maybe other diseases. It’s, it’s amazing.
Steven Newmark 10:41
Yeah. So where does that leave our community? You know, we talked earlier about how the immunocompromised are potentially being left out of some of these discussions, and we’re just in a different category. What if we could flip that discussion? Instead of saying the greatest good for the greatest number of people, we could really focus on tailored policies and solutions to provide the right support to different populations and not leave people behind.
Zoe Rothblatt 11:01
I think, talking about tailored solutions, an easy one that I was thinking of is returning to the office. I know so many in our community are worried about it, they have no choice, and are scared to bring it up with their boss in fear of losing their job. And that, to me, feels like an easy place to start. Making flexible work options, offering masks only areas, offering regular COVID testing. And I think really thinking through what people need to feel comfortable and safe. We can’t rely on a one size fits all approach. And, you know, I would love to see people from our community being uplifted in these positions to help make these decisions and to help people and policymakers and you know, employers and whoever is in charge of making decisions to say, you know, we have a voice here it is, we can’t do one size fits all.
Steven Newmark 11:48
Yeah, it’s something we do here at GHLF, is listen to our community. We mentioned our poll, and we regularly poll our members and we meet with our Patient Leadership Councils. And it’s listening that helps us create the right resources that people are looking for
Zoe Rothblatt 12:00
Listening is such a big part of it. And people with chronic disease just had a seat at the table and we’re part of conversations about opening up and returning to normal. Honestly, all healthcare policy is it feels like sometimes patients just don’t have a seat at the table. I know we advocate and show up and lend our voice. But I think that it would be so much better if there was a real spot to listen to our community in this COVID scenario. And you know, COVID hasn’t disappeared. We can’t just act like it did.
Steven Newmark 12:31
Now I get to exhale. ,
Zoe Rothblatt 12:33
Well, maybe not such a big exhale. You gotta stay vigilant, Steven,
Steven Newmark 12:37
I will, I will. I’ll exhale into my N95 mask.
Zoe Rothblatt 12:41
So that brings us to the close of our show. Steven, what did you learn about today?
Steven Newmark 12:46
I just learned like the importance of listening. I think it’s important for us to listen to our patients, our listeners, and it helps inform the decision making process. Listening, employers need to listen to their employees to create the right work environment as we start to go back to work and our elected officials and policymakers need to listen to everyone in the community, particularly folks dealing with immunocompromised conditions to help craft policies.
Zoe Rothblatt 13:11
For me, two things. The first is that, you know, we’ve had a guest for the past couple of weeks, and it feels good to be back just us chatting and going through the news. We love our guests. We love our guests but this is home for us. So, thanks, Steven, for a great conversation today. And my learning is also about our poll results from our community with COVID. I felt so comforted when I read them and just it gave me more knowledge and to me knowledge is power and helps me take care of myself and have better conversations with my doctors. So, thank you to everyone who participated in the poll because it really helped me.
Steven Newmark 13:45
Well, we hope you learned something too. We’d love to hear your rants as well. Send your email, in rant form, to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 13:57
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 14:05
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 14:09
Well, everyone thank you for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts. And definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 14:28
I’m Steven Newmark. We’ll see you next time.
Narrator 14:34
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 15- Becoming a Health Advocate Through Grief
Rashaunda Shaw became a health advocate when her mother and sister were both hospitalized and dying. Now, she’s turned her grief into purpose.
“In the midst of us grieving, we would start this foundation to advocate and raise awareness around digestive diseases in the African American community,” says Rashaunda, founder of the nonprofit Shakeilya Shaw Scholars Education Foundation.”
S3, Ep 15- Becoming an Advocate Through Grief
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Rashaunda Shaw 00:08
My oldest sister smiled because she was just like, “You are like on this computer finding out all this information.” I said, “No, we have to definitely support her as best as we could.”
Steven Newmark 00:22
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:32
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:36
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from.
Zoe Rothblatt 00:50
Steven, I’d like to give a shout out to your other podcast, Gut Culture. New episodes are coming out and I’m just loving this mix of patient and expert perspectives.
Steven Newmark 01:00
Well, thank you. I co-host that one with Melodie, from Color of Crohn’s and Chronic Illness, or COCCI. And together we challenge assumptions around IBD.
Zoe Rothblatt 01:07
And you can check them all out at ghlf.org/listen. So let’s get started as we always do with the listener comment. Are you ready?
Steven Newmark 01:16
I am ready.
Zoe Rothblatt 01:18
This one is from HGlistens who wrote, “This podcast is so easy to listen to. And I appreciate how the hosts always bring in the Chronic Disease perspective.”
Steven Newmark 01:28
It’s unfortunate that the chronically ill certainly seem to be forgotten about at this stage of the pandemic. The whole idea of returning to normalcy and everyone seems back and like la dee dah, everything is fine again, but there really is barely a mention of those suffering from chronic illness.
Zoe Rothblatt 01:34
This week on The Health Advocates later in the episode, we have a special guest here with us. Rashaunda Shaw, who is an advocate for digestive diseases.
Steven Newmark 01:50
Rashaunda is here today to talk about her family’s story and how we can better advocate and raise awareness for digestive diseases.
Zoe Rothblatt 01:56
And we look forward to that conversation. But first, we have a few news updates for our community.
Steven Newmark 02:01
First thing is Philadelphia is reinstating their mask mandate as the city responds to a new wave in COVID cases.
Zoe Rothblatt 02:07
Right, COVID cases are on the rise in the Northeast, once again. I also heard that many US universities are reinstating mask mandates because of this uptick in cases.
Steven Newmark 02:17
But we aren’t seeing a massive spike like we did with the Omicron surge this past winter. And that is likely due to the fact that we have protection from those who got infected with Omicron. And also, of course, we have protections from the vaccines and boosters.
Zoe Rothblatt 02:29
So true. And I really do feel relieved that we have these protections and aren’t seeing this huge dramatic spike. Well, just yet. We never know. I’m always on my toes with COVID. Steven, also on my mind this week, is Dr. Fauci said, we’re going to see that each individual is going to have to make their calculation for the amount of risk they want to take.
Dr. Anthony Fauci 02:48
Even though I’m in a green zone, I want to feel a little bit more protected because I’m either elderly, I’m frail, I have an underlying condition. So people need to understand that the judgment call with broad recommendations from the CDC is still at an individual basis.
Zoe Rothblatt 03:04
This, to me, was in stark contrast to the messages all along about working together and keeping the community safe. It was kind of surprising.
Steven Newmark 03:12
Totally, I still just don’t understand why it is so onerous to put on a little face covering to help vulnerable folks in our society, but apparently it is for too many people. We’ve talked about it many times here how when it comes to public health, it really is about society working together to protect each other. And while people should make decisions about their own health, we should be working in a societal framework, like everyone getting vaccinated to protect the community.
Zoe Rothblatt 03:37
I totally agree. Well said, Steven. And you know, while we have to learn to live with this virus, we can’t just completely ignore that there are many people out there living with underlying conditions who are at risk for severe COVID. So we’ll keep advocating is all I have to say.
Steven Newmark 03:53
Well, with that, we will turn to our special guests here, Rashaunda Shaw. Rashaunda is an educator, principal, healthcare and patient communication advocate, as well as nonprofit founder of the Shakeilya Shaw Scholars Education Foundation. She resides in Baldwin, New York, and lives with her three children and her husband. After the unimaginable loss of her mother and sister, she began speaking up for patients health rights and navigating a path for better medical communication. At her core, Rashaunda is grounded in faith and rooted in family first. Aside from her consistent advocacy for awareness and understanding of digestive diseases within the African American community, she’s a mother, wife, educator, volunteer and Girl Scout co-troop leader who is passionate about community contribution. Very cool. Thank you, Rashaunda, for coming on.
Rashaunda Shaw 04:41
Good morning. Thank you for having me.
Zoe Rothblatt 04:43
So Rashaunda, we first met you at the Digestive Disease National Coalition advocating for digestive diseases. So, you know, we’re a bit familiar with your story, but can you start off telling our listeners about your story and what led you to start advocating?
Rashaunda Shaw 04:58
Sure, sure. After the unimaginable double loss of my mom from acute pancreatitis, two years later, approaching the one year anniversary from my youngest sister who passed at 43 from complications of kidney disease and liver disease, I realized that this issue doesn’t have nearly as much awareness or support, prevention, intervention, and education as it needs. Specifically in the African American community. After the loss of the two most important people in my life, I’ve made it my mission, to bring it to light.
Steven Newmark 05:35
Can you tell us a little bit about the health disparities that you and your family have faced and how they have impacted getting a diagnosis and treatment, perhaps?
Rashaunda Shaw 05:44
Although both of them had health insurance, the hospitals that they were admitted to, they were well versed in the disease. But as far as like reaching out to another facility that was located in New York City, who could assist and support my mom, I don’t think that enough was done there to actually get my mom to another facility. When we admitted her to the hospital, we weren’t sure about the diagnosis. It took a while to get the diagnosis. Tests had to be run. The next day, they told us that she had acute pancreatitis, she was placed in ICU. Fast forward a couple of weeks later, they were telling us that we needed to transfer her after the supportive therapies that they were given her to a subacute rehab. We knew that my mom was still not in the best shape possible to be released from the hospital. But the social workers, the doctors who were taking care of her, they insisted, “Oh, you know, she can get the therapy and the support that she needs in subacute rehab.” So we went on a quest to look for a subacute rehab. We found one in Long Island, and we transferred her there. This was a quick weekend, we had to end up rushing her back to the hospital. But it took a very long time for this process to actually happen, which is why I believe that the health disparities, in reference to having a patient with acute pancreatitis transferred immediately once they start to show some improvement, from a hospital to a subacute rehab, was not the best outcome for my mom, which resulted in her passing that Monday. It just felt like that was not the right course of action for her to have been offered.
Zoe Rothblatt 07:29
Listening to you, like, it’s so frustrating knowing that an expert in the condition is so close by and you guys are trying to navigate that. It’s hard to do as a healthy person, and it’s even harder to do when you don’t feel well. I’m wondering if you have advice for people on how to advocate when you find yourself in the situation where you’re having this poor communication with medical teams?
Rashaunda Shaw 07:50
Yes. Clarity, succinctness, and making things as honest and clear as possible would have been something that my sisters and I would have appreciated from the medical professionals who were handling my mom’s care at the time. I took copious notes in my iPhone to record day to day interactions, questions that I had with the doctors. One of the things that I was adamant about was having family meetings with the physicians so that we would be clear as to, you know, what is my mom’s diagnosis. Asking those hard questions about prognosis is something that many people may not be able to get that statement out, that question out, at the time, because it’s a very emotionally charged question to ask when your loved one is sitting there, and you see your loved one in ICU, and you see all of the machinery and everything trying to keep that person alive. And you’re asking about the diagnosis, the prognosis, and where do we go from here. I also used an app called Just Answer, where doctors are located and you can field questions to doctors. And one of the things that I did was, I was being very honest and open about what was transpiring at the time with my mother and my sister who was hospitalized last year. They were also able to give me additional questions to ask, which I thought was completely helpful for me.
Steven Newmark 09:18
How did you and your surviving sister do things differently with your younger sister?
Rashaunda Shaw 09:22
So with my youngest sister, Shakeilya, she got sick last year. She was rushed to the hospital with complications due to her kidney. One of the things that I noticed with my Mom, she wanted us to know like where her paperwork was. We didn’t want to hear that. So this time around with my sister, we got a family lawyer involved because my sister was 43. She wasn’t married, she didn’t have any children. We were able to actually enlist the support of a lawyer who was able to draw up paperwork for Shakeilya. The medical healthcare proxy, which the hospital allows you to do as well, but we wanted to have one that was very specific. We also had how she wanted us to advocate for her. So we had all of the legal documentation that we needed to make decisions for her in the event that she couldn’t. And it actually came in handy because she started suffering from, with liver disease, it starts to take a toll on your mental capacity, so she developed encephalopathy. And at that particular point, she was placed back into the neuro step-down unit trying to help her. We also had multiple meetings with the hospital staff. I was emailing the Chief Medical Officer trying to get answers as to, okay, well, have you tried this particular procedure, because they weren’t clear as to what her diagnosis was. I think the doctors, they were really surprised that I was able to ask those questions under such an intense situation that could be very depressing for another family. So I was very well involved with what was going on with her case. And then I also understood, not just researching information on Google, doctors may not listen to that, but they respect the NHI. So any information that I was able to get from NHI, they were very respectful of that. And they tried it. I printed articles for them, I emailed articles to them, and, you know, at the end of everything, they did say to me that I was very much involved with researching and finding out different procedures that they could actually do that they did not think about at that time. And that kind of made my oldest sister smile, because she was just like, “You are like, on this computer finding out all this information.” I said, “No, we have to definitely support her as best as we could.”
Zoe Rothblatt 11:55
I got the sense that you really honored your sister and and your mother too in these decisions and, you know, were doing all that you could to just communicate, write down, speak up, research. It’s really amazing to hear and thinking about speaking up, I know, you started this foundation in your sister’s name, can you tell us a little bit about that work and how you got to starting that?
Rashaunda Shaw 12:17
Yes. I wanted to turn our pain, our grief, into purpose and continuing to advocate for patients, whether patients are in the hospital or patients are in education setting. And both my mom and my sister, they were educators. My sister worked in a school in Bedford Stuyvesant, where we grew up as children. And it’s a very struggling neighborhood for many of the students who live in an urban setting. And one of the things that Shakeilya would do every year was to organize a school supply drive for the students at her school. And we wanted to continue her legacy of what she had started. And both my mom and my sister, I would describe them as silent missionaries. So they never told people what they were doing for others. So we decided that, in the midst of us grieving, that we would continue her legacy and we would start this foundation. And the foundation has like a two part goal. And that goal is to advocate and explain and raise awareness around digestive diseases in the African American community. And we’re doing that through our church, through organizations within that neighborhood. And then we also wanted to help parents of students who may have been impacted by COVID, or other situations like foster care, or homelessness, or parents who may not make enough money, and they may have a large family of children who need education supplies. So we launched our first initiative, and we did some fundraising. And we asked for donations from local people who loved my sister and my mom. And we were able to raise over $6,000 in the first year, and we were able to purchase the book bags, the supplies for the students. My sister was a part of the Order of the Eastern Star. So all of her sisters, and I have a 17 year old son, my 14 year old son, and my seven year old daughter, and my husband, we all met with the principal, we did a collaboration with a school supply company called Yes Bundle to pack the supplies. And the first giveaway that we wanted to do was at our church, Price Fellowship Baptist Church in Brooklyn, New York. And the smiles that we saw on the children’s faces and the parents, you know, being grateful for those supplies was priceless.
Zoe Rothblatt 14:44
Wow. That’s amazing. That’s really special. Yeah.
Rashaunda Shaw 14:49
Thank you.
Steven Newmark 14:50
That’s fantastic. Rashaunda, thank you so much for coming on and sharing your inspiring story and hopefully helping to encourage others who are out there. So thank you, Rashaunda.
Zoe Rothblatt 14:59
Yea, and thank you for all you do for the community. It sounds like you, know, you’re really bringing people together in memory of your sister and mother. So that’s awesome.
Rashaunda Shaw 15:08
Thank you so much for having me.
Zoe Rothblatt 15:10
Of course. That brings us to the close of our show, and at the close of our show, Steven and I talk about what we learned today. So Steven, what’s on your mind?
Steven Newmark 15:18
Yeah, mine was just a reminder in talking to Rashaunda, how there are good people out there. And it’s important to know when times are tough.
Zoe Rothblatt 15:25
And I was reminded about when you’re sick or a loved one’s sick, you really do have to become a medical expert and how much words and terminology there is to learn in order to communicate.
Steven Newmark 15:36
Absolutely. Well, we hope you learned something too. We’d love to hear from you about your advocacy stories or anything else that’s on your mind. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 15:51
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 15:57
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 16:02
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts. And hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 16:20
I’m Steven Newmark. We’ll see you next time.
Narrator 16:26
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 14- Patients Fight, Advocates Unite
For patients with chronic illness, getting through a day is often daunting. But these same people have the power to impact change when they share their stories. Recently, the Global Healthy Living Foundation participated in an advocacy event to educate lawmakers on challenges facing people with digestive diseases — all in an effort to pass laws to help them.
“A brave person who is suffering from a chronic health care condition is willing to visit their legislator in Washington or get on a Zoom to talk about how they’re impacted by digestive diseases and educate them about what’s happening in their community,” says Dale Dirks of the Digestive Disease National Coalition.
S3, Ep 14- Patients Fight, Advocates Unite
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dale Dirks 00:09
A brave person who is suffering from a chronic healthcare condition is willing to visit their legislator in Washington or get on a Zoom to talk about how they’re impacted by digestive diseases and educate them about what’s happening in their community.
Steven Newmark 00:27
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:37
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:42
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:55
And you can check them all out at ghlf.org/listen.
Steven Newmark 00:59
One of our newer podcasts that I’m particularly proud of is Gut Culture, where I am a co-host with my friend Melodie Narain-Blackwell, who is the founder of Color of Crohn’s and Chronic Illness, and we discuss issues dealing with IBD specific to the Black community. And it’s been a great learning experience for me.
Zoe Rothblatt 01:18
I’m so excited for new episodes to drop. Okay, Steven, shall we get started with a listener comment, as we always do?
Steven Newmark 01:25
Yes, let’s do it.
Zoe Rothblatt 01:26
So this one is from Jess L, who said, “This podcast is really helpful for keeping me informed as someone living with chronic disease.”
Steven Newmark 01:33
Well, that’s what we aim to do, to keep folks informed and help also create the sense of community for folks living with chronic illness.
Zoe Rothblatt 01:41
Today’s episode is a bit different than our usual stuff. We have a guest here with us.
Steven Newmark 01:46
We recently participated in the Digestive Disease National Coalition’s Public Policy Forum. And we spoke about our efforts on virtual advocacy on Capitol Hill.
Zoe Rothblatt 01:55
And in today’s episode from the DDNC, we have with us Dale Dirks. Dale, how are you doing?
Dale Dirks 02:00
Glad to be here with you and thanks for asking me to join you.
Steven Newmark 02:03
Thank you so much for being here. In previous episode, we talked about the days of in person advocacy and being together and the collective feeling of being part of an organization like DDNC, where we come together and advocate for. Can you tell us a little bit about the history of the DDNC?
Dale Dirks 02:17
The DDNC was actually started in 1978, the founder of the Crohn’s and Colitis Foundation, and then president of the American Gastroenterological Association decided that if they were going to convince Congress to implement the recommendations of this National Commission on Digestive Disease Research, it would be important for all digestive disease organizations to speak with one voice to urge Congress to implement the recommendations of the National Commission. It turns out, that was the start of the DDNC. One of the first accomplishments of the organization was to take those recommendations of this National Commission on digestive disease research and implement them into the structural changes that were recommended by the National Commission. And what you see now at NIH, the National Institutes of Health is the National Institute of Diabetes, and Digestive and Kidney Disease Research at NIH. And that was the first big advocacy victory for the organization.
Steven Newmark 03:17
What led you specifically to digestive health and what brought you to the DDNC and digestive health?
Dale Dirks 03:23
I’m the President of the Health and Medicine Council of Washington, which is a government relations firm. And the DDNC is one of the many clients that we have that are focused on health policy. My family is very politically active. My dad started this firm back in 1978. And I came to work for him in 1982.
Zoe Rothblatt 03:40
Our listeners may know but I have a digestive disease called Crohn’s disease, which ultimately led me to GHLF and to pursue patient advocacy because I personally saw how much patients have to go through and I’m sort of getting the sense from you that it’s also in your blood and you grew up just learning.
Dale Dirks 03:57
I’ll tell you this one of the tragedies of digestive disease is that it impacts a lot of people. My dad died from colon cancer at the age of 59, which helps me enhance my focus on digestive diseases as an advocate. I’ll also say looking back at the late 1970s, early 1980s, people with Crohn’s disease and ulcerative colitis were subjected to a lifetime of surgeries and poor health outcomes. Not everyone is positively impacted by the treatments that are available today. But a lot more people are. If you fast forward 40 years from then to now, people with Crohn’s disease and ulcerative colitis and other digestive healthcare conditions have a lot more treatment options. And in some respects, many of them can lead a normal life. And that wasn’t the case. It points up the importance of that investment in research and public health programs that are focused on digestive diseases on a day to day basis sometimes it’s hard to see progress, but if you look at it over the course of decades, you can see real progress that’s made and the improvement in people’s lives that suffering from chronic digestive diseases.
Steven Newmark 05:02
That’s really a great point. As an advocacy professional myself, I find that when I speak to lay folk, if you will, there’s a lot of frustration with Congress, oh, nothing ever happens in Washington, this and that. But as you know, progress is slow. It takes a while. Can you point to some advocacy efforts that you’ve been involved with over the years that have proved beneficial to patients?
Dale Dirks 05:22
Well, the first one, I would just remind you about the implementation of the recommendations of the National Commission on Digestive Diseases, and the fact that both patient and professional organizations coalesced around those recommendations and went to Congress and said, “Look, you know, if you really want to get a fix on research on digestive diseases and improve people’s lives, you got to implement these recommendations.” And we made a convincing case to Congress thanks to people like Suzanne Rosenthal, who is the founder of the Crohn’s and Colitis Foundation. She would come down from New York periodically and stand before Congress and testify before the committee’s. She wasn’t someone that legislators could say no to. The DDNC advocated for a Medicare benefit for colon cancer screening. Back in those days, it was required that Congress actually include something in the law for a preventive health screening benefit, and we convinced Congress to add a colon cancer screening benefit to the Medicare program, and that not only opened up improve outcomes for colon cancer screening for Medicare beneficiaries, but it was a signal to other third party payers, private insurance, that they should focus more on colon cancer screening. Year and a half ago, we were able to fix the polyp penalty, which is a loophole that if an individual that was receiving screening colonoscopy, if a polyp was found, then it became a therapeutic event which required a copay for the beneficiary. And we were able to solve that loophole working with organizations like the ACG, the AGA, and the American Cancer Society. Currently, we’re focused on patient access issues like the Safe Step Act, which would put the guardrails around the practice of step therapy. I will just say to you that any of those advocacy successes takes a sustained effort, it took several years for the implementation of the National Commission’s recommendations, we advocated with Congress for about eight years to get a colon cancer screening benefit. We advocated for almost 10 years to fix the polyp penalty. And we’re in the third or fourth year of advocating for the Safe Step Act. And we have high hopes that Congress is going to pass that legislation, but it’s going to take a sustained effort.
Zoe Rothblatt 07:36
We’ve talked a lot about the Safe Step Act on this podcast and just how much it would help patients. And you mentioned all these successes from the DDNC, which we’re so grateful for. You mentioned a couple of groups that you’ve worked with over the years, how has the digestive community changed and grown over the years and what’s it like to work with different groups?
Dale Dirks 07:57
I’m really proud of the DDNC because it’s been an organization that’s been around for a while. And it’s always maintained a robust membership of about 40 different national voluntary organizations and professional societies. The group has been effective. We do any number of things to get the word out about digestive diseases with legislators and other decision makers in Washington. It used to be that Congress held a more formal process on an annual basis of getting input from the public. But as things have got busier, and busier and busier, and legislators have got busier, and busier and busier, they hold fewer public hearings than they used to. So advocates for any chronic healthcare condition, including digestive diseases have had to seek ways of getting the ear of legislators and other decision makers in Washington. For the last two years, we’ve had the Public Policy Forum as a virtual event because of the health pandemic and the fact that Capitol Hill is really not allowing visitors but we hope to get back to in person advocacy activities in a traditional public policy forum in 2023.
Steven Newmark 08:11
You know, it was interesting, we were talking about Suzanne Rosenthal, we often talk about on this podcast, and in general at GHLF, the importance of sharing stories with lawmakers, explain to them the issues, and when a lawmaker understands the issues, you’re more likely to see positive results. I’m wondering if you could talk a bit more about that, the importance of actually having patients and providers talk directly to lawmakers to share what it’s like to go through the patient journey.
Dale Dirks 09:33
I think one of the hallmarks of the DDNC is that we invite people from all over the country to the Public Policy Forum to share their story. And the important thing is that you don’t have to be a legislative expert. You don’t have to know what fiscal year it is. You don’t have to know the bill numbers. What’s really important and what we find most effective is that a brave person who is suffering from a chronic healthcare condition, and many times it’s very personal in nature, is willing to visit their legislator in Washington or get on a Zoom meeting or some other electronic opportunity to talk with their legislators about how they’re impacted by digestive diseases and educate them about what’s happening in their community. And it takes a special person to be able to do those kinds of things. We host all of our teams this past year, we had people from 33 states, we had 14 teams making over 100 visits to congressional offices, and we met in advance with each of the teams and the most effective advocates are those that are willing and able to tell their legislators their story. As a result of hearing their story, most folks in Congress feel compelled to help us. And we’ve got a ready made list of the things that they can do, like support additional funding for research and public health in digestive diseases and support the Safe Step Act.
Zoe Rothblatt 10:57
I will say the DDNC makes it so easy to participate. You guys really put bullet points together and send it to the people advocating and also the legislators and their aides. I know in some meetings, we even reference, you have the materials they sent over. And they said, “Yes, like we have it all.” It’s just do the talking. And it’s so easy. So thank you, Dale.
Dale Dirks 11:17
I’m really proud of the advocates who come from around the country and are willing to share their stories. Some of what you hear is heart rendering. And if I were a legislator, there’s no way that I could say no to any of these folks.
Steven Newmark 11:28
And going to Capitol Hill, it can be overwhelming, but you at the DDNC do make it so easy for us to travel with you and for patients to come and share their stories which is so important. And for that we’re grateful. With that we thank you for your time today. We thank you for your continued efforts on behalf of patients dealing with digestive diseases, and we look forward to continuing to work with the DDNC
Dale Dirks 11:51
Thanks to both of you for having me today. And anyone is welcome to join the DDNC. Any national organization that has a focus and interest on digestive diseases, you can visit the DDNC website at ddnc.org. And we look forward to having anyone in the country that has an interest in sharing their stories about digestive diseases to join us in our annual Public Policy Forum. Thanks to you both.
Zoe Rothblatt 12:16
Thank you, Dale, so much for coming on and sharing your story with us. That does bring us to the close of our show and at the close of our show, Steven and I discuss what we learned about each episode. So Steven, what did you learn today?
Steven Newmark 12:28
I was reminded from Dale about the slowness, the process of change, not just in legislation, but also in healthcare, generally, in all policy areas, and how much further advanced we are today in medicine, and specifically for IBD patients or digestive disease patients. And it truly is better to be alive today than it was decades ago. So sometimes you forget that and it was a good reminder.
Zoe Rothblatt 12:52
Amen to that. And I learned how important it is to pivot what you do. Dale talked about how the DDNC has been doing these meetings in person for decades, and now it turned virtual and it’s been a huge success. So just you know, keep innovating and trying new things, and it’ll hopefully work out.
Steven Newmark 13:11
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories, Send your email to [email protected] Or better yet include a short video or audio clip.
Zoe Rothblatt 13:22
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 13:29
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 13:33
Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 13:51
I’m Steven Newmark. We’ll see you next time.
Narrator 13:56
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, E13: Overcoming Years of Chronic Pain and Misdiagnoses
Imagine having severe abdominal pain, insomnia, and weight loss- and nobody knows how to diagnose you. For patients like Eric, it took painstaking years to properly diagnose him with chronic pancreatitis. In this episode, meet his sister, Megan Golden, who quit her job and launched a nonprofit to help.
“With many diseases that require specialty care, if you’re not near one of the few experts and have the ability to see them, then you’re just out of luck,” says Megan, co-founder and CEO of Mission Cure, a nonprofit with the goal of improving patient outcomes.
S3, E13: Overcoming Years of Chronic Pain and Misdiagnoses
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Megan Golden 00:08
With many diseases that require specialty care, if you’re not near one of the few experts and have the ability to see them, then you’re just out of luck.
Steven Newmark 00:19
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation. Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. Before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts in our podcast network. We have so many to choose from.
Zoe Rothblatt 00:47
Yeah, we sure do. And you can check them all out at ghlf.org/listen.
Steven Newmark 00:52
One of our newest podcasts in our GHLF Network is Getting Clear on Psoriasis, which is a podcast focused on what it takes to live better with psoriasis.
Zoe Rothblatt 01:00
That one is really great. I love the mix of experts and patients. It really brings together all voices. So Steven, let’s start with a listener comment as we always do. Are you ready?
Steven Newmark 01:10
I am ready.
Zoe Rothblatt 01:11
This one is from Steph C., who wrote in saying, “I love tuning into the show weekly and hearing from the hosts. It brings me lots of comfort.”
Steven Newmark 01:18
That’s part of what we aim to do is to provide comfort, provide a sense of community, and letting folks know that you’re not alone. And hopefully each week we continue to do that for folks like Steph C. and others.
Zoe Rothblatt 01:29
This week later in the episode we have a special guest here with us, Megan Golden, who’s the Cofounder and CEO of Mission Cure, which is a nonprofit with the goal of improving patient outcomes.
Steven Newmark 01:39
Megan is here to talk with us about her organization and the work they do for chronic pancreatitis, a devastating disease afflicting her younger brother.
Zoe Rothblatt 01:47
But first we have a few news updates for our community.
Steven Newmark 01:51
First up in recent news, the CDC updated its guidance so that people visiting healthcare facilities are allowed to wear highly protective masks such as N95s.
Zoe Rothblatt 02:00
What this means is that sometimes when you go into the hospital, they have someone at the door who asks you to put on a surgical mask that you’re required to wear. Even if you already have a mask on, they ask you to either remove that one or put theirs over your mask. And there’s been pushback from patients who are in N95s and say it isn’t fair that you’re making me put on a less protective mask.
Steven Newmark 02:19
I’ve had that happen to me before actually in healthcare settings. You would think that the anyone working in a healthcare facility would at least have been given some kind of a memo explaining what the N95s are versus the surgical masks. But alas, this is especially important for our chronic disease community who rely on more protective masks and are also more likely to be going to the hospital for appointments and of course want to feel as safe as possible during those times.
Zoe Rothblatt 02:41
We also have a few COVID vaccine updates. The first is that the FDA, the US Food and Drug Administration, authorized a second booster for people age 50 and up and this is for both the Moderna and the Pfizer vaccine and this booster should be taken four months after their last shot. So the first booster.
Steven Newmark 02:58
Yes, and this comes as evidence that protections from three shots is fading and a fourth shot would help boost immunity. And with BA.2 more contagious than Omicron, we want to ensure that people have the protection they need to stay safe. On the other hand, there are critics are saying there just isn’t enough evidence at this time to say that another shot is needed and that it will provide strong protection that lasts.
Zoe Rothblatt 03:18
And unlike the previous authorization, the FDA is not expected to make the second booster recommendation for everyone but rather an option to say it’s available for those who want it.
Steven Newmark 03:29
The other vaccine update, Moderna will ask the FDA to authorize its vaccine for Emergency Use Authorization for ages six months to six years old.
Zoe Rothblatt 03:37
Moderna released data from two clinical trials which showed that the vaccines generated similar immune responses in this age group as seen in adults aged 18 to 25.
Steven Newmark 03:47
I know a lot of parents with young children are particularly still on edge. So we’ll see what happens there. And finally, we do also have some non-COVID News. The Michigan State legislature voted to pass a bill that would speed delays in care by shortening the required time for an insurer to respond and provide more transparency around the prior authorization process.
Zoe Rothblatt 04:06
Oh boy, we could do a whole episode on prior authorization and how frustrating these delays are for patients. But it’s really good to hear about laws being passed to help shorten this delays and frustration.
Steven Newmark 04:20
So let’s get on with it. We have a special guest today, as you mentioned up at the top, Megan Golden, who comes to us from Mission Cure.
Zoe Rothblatt 04:29
Hi Megan, welcome back to The Health Advocates.
Megan Golden 04:31
Thank you. I’m happy to be here.
Zoe Rothblatt 04:33
Tell us about your story and what led you to become an advocate and start Mission Cure.
Megan Golden 04:38
I am trained as a lawyer and I had been working in the nonprofit sector for a number of years. Around 2014, I was working on an innovative type of financing for early childhood programs that was called Social Impact Bonds. I was going around the country working with different jurisdictions to see whether this new type of financing, which is based on outcomes, the outcomes that people serve by these early childhood programs, could be used to expand their maternal and child health and preschool and child welfare programs. And as I was doing that, I would visit my brother who lives in LA. One time I was there and he was very sick to his stomach. He was in a lot of pain. He was becoming sicker and sicker, unable to sleep, and had a stabbing pain in his abdomen. It took a few years and a few misdiagnoses before he was diagnosed with chronic pancreatitis. At that time, he had lost a lot of weight. And so we did some research to try to understand this disease and what causes it and realize that it’s inflammation of the pancreas. And nobody really knew why, and there’s no treatment. So we were just supposed to watch as his pancreas continued to be inflamed and have fibrosis and scarring. And he lost his pancreatic function. Once we realized that, I started thinking, well, this is actually similar to the type of work I’m doing in maternal and child health, that this is a problem where our society is spending billions of dollars on people going in and out of the hospital with terrible outcomes. And obviously, the people, patients, and their families are suffering. And yet people who are trying to do research and trying to develop therapies are struggling to get a small amount of money just to do a little bit of research. I remember being on a walk with my brother and we said, “Wait, why can’t this innovative financing work to shift the resources for a disease like chronic pancreatitis?” And we talked to the pancreatic experts, and the people I knew in the innovative finance space and said, “What if we started a nonprofit to do this?” And we got enough positive feedback that I quit my job and launched Mission Cure in 2017.
Steven Newmark 07:09
Wow, that’s fascinating. Can you tell us a little bit more about some things that you wish that more folks in the general public understood about pancreatitis?
Megan Golden 07:18
Pancreatitis, as I said, is inflammation of the pancreas. And it’s one of the most painful conditions that anyone can have. And there’s no effective treatment other than palliative care. It’s much more common to have acute pancreatitis, acute episode of inflammation, but for some people, that inflammation becomes chronic, and there’s a lot of pain and they can lose the exocrine function that digestive enzymes and become diabetic. What I wish people knew is that this disease is not caused by alcohol. Unfortunately, people are taught in med school, I think I’m hoping this is changing, that pancreatitis is a disease of alcoholics and it’s caused by drinking too much alcohol. And it turns out as science has advanced, and we’ve learned more about genetics, that that’s just simply not true. Most chronic pancreatitis is caused by or contributed to by genetic variants. Having this misperception about alcohol is actually really harmful and stigmatizing to patients. Children get this disease. And we hear way too many stories of parents taking, say, a four year old child to the emergency room in intense intense pain curled up in a ball. And then the parent is accused of giving the child alcohol because the physicians or the practitioners do not know that this is a genetic disease, especially for children.
Zoe Rothblatt 08:48
That’s really shocking and terrible to hear. And just so important to share this story and get the word out. And in thinking about those misconceptions, and you mentioned, it took a few years for your brother to get a diagnosis. Obviously, there was a bit of a lack of patient centered care going on. So what does an ideal patient centered care look like, I mean, for you and your brother on this journey?
Megan Golden 09:11
This is something that we have thought a lot about. I’ll start with a story, that my brother Eric went to, I think one of the only pancreas treatment places in the country where you see a pain specialist and a pain psychologist in the same visit or you see the gastroenterologist and they coordinate with each other. And they talked to them all and they all kind of convened and discussed and came up with a plan. And I remember him calling me on the way back from that visit and saying even though his pancreas was the same, he said, “I feel better today than I have in almost 10 years since I got this diagnosis because I have a plan.” And so that actually led us, Mission Cure, to really start focusing on what does real good patient centered care look like. Number one, it’s driven by outcomes that are important to patients. Everybody gets best practice care, regardless of whether they live near an academic medical center, or have the right insurance. That is not what happens today. And with many diseases that requires specialty care, if you’re not near one of the few experts and have the ability to see them, then you’re just out of luck. And the third, the care is multidisciplinary. So it includes pain management, mental health, nutrition, and sometimes endocrinology. And then finally, that you have a plan, that you monitor the patient outcomes, and you readjust the care and the plan as patient goes on to try to make those outcomes better.
Steven Newmark 10:48
In the few short years that your organization has been around, can you tell us about some of the positive impacts you have been able to have, particularly on the advocacy front?
Megan Golden 10:56
One thing I would mention is that we helped organize a patient focused drug development meeting with the Food and Drug Administration. Many patients testified about this condition and the impact on their lives and treatments they had tried. That was kind of the beginning of the FDA recognizing that there’s a really serious unmet need in this area, and that we need to find treatments. The second improvement that we’ve been able to do is to come up with what we call a Cure Strategy. What we first did is get an understanding of where the science is now. And we know where we want to be in 10 years in terms of which patient outcomes we want to improve, and what is the roadmap to get us from where we are now to where we want to be. And that’s something that didn’t exist before. We’re lucky that we have a number of researchers working on pancreatitis. However, each researcher has their own area of expertise. And there is not an entity in our research and drug development system whose job it is to say, “This is where we want to be in 10 years, and this is how we’re going to get there.” So we created that roadmap and now we are working to advance multiple efforts and multiple shots on goal to get us there.
Zoe Rothblatt 12:19
You mentioned patients testifying in front of the FDA and sharing their story. What advice do you have for patients that are looking to speak up and advocate and get involved but don’t really know where to get started?
Megan Golden 12:32
Patient stories are incredibly important for educating all of the people that need to come together to develop therapies and improve patient outcomes. We work with many different stakeholders. They’re all really motivated by trying to help people. So when they can really see the impact that their actions can have on a specific patient and family, then that can spur them to action.
Steven Newmark 12:55
Definitely. And Zoe and I have seen that firsthand ourselves in advocating on behalf of patients as well. You know, you bring together many experts, what is it like working with different stakeholders?
Megan Golden 13:05
I love it. What brings people to this field, regardless of which role they play is that they want to help people get better. So we work with academics, pharma, biotech, startups, government, healthcare providers, and obviously patients and families. Even though each of these groups has their own interests, we can often find common ground on putting together a plan and taking action to help patients. And crafting a plan that does that while meeting each stakeholders needs is a fun challenge. And one that keeps it interesting every day.
Steven Newmark 13:42
Yeah, excellent. This was fantastic. Megan, thank you so much for being so generous with your time and more importantly, for both you and your brother, just sharing your stories. Those are not always easy to share. And we’re aware of that. And we are grateful that you’re willing to do so publicly and willing to do so on our program. So thank you so much, Megan. Before we let you go, can you tell us where we can find more information on Mission Cure?
Megan Golden 14:05
Yes, you can find us online on our website at mission-cure.org. And we are also on Twitter, Facebook, Instagram, and YouTube.
Zoe Rothblatt 14:18
Awesome. Thank you so much. It’s always nice connecting with fellow advocates. So thank you for joining us today.
Megan Golden 14:24
Thank you for having me.
Zoe Rothblatt 14:26
And that brings us to the close of our show. Steven, each time we share what we learned about today. I think there’s a lot of learnings here.
Steven Newmark 14:32
I was, still am, but was even more so very ignorant when it came to pancreatitis. So I am grateful to Megan for having taught me a little bit about the disease and I plan to learn a little bit more about what these folks are going through.
Zoe Rothblatt 14:44
Something for me, I learned about, you know, the horrible misconception that people believe that alcohol causes pancreatitis and that people are really suffering and being blamed for a condition that they’re not responsible for.
Steven Newmark 14:58
We hope you have learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet include a short video or audio clip.
Zoe Rothblatt 15:09
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 15:15
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 15:20
Well, everyone thank you for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts, and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 15:38
I’m Steven Newmark. We’ll see you next time.
Narrator 15:43
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, E12: COVID Subvariant: Stay Vigiliant My Friends
The new Omicron subvariant BA.2 hasn’t stopped the majority of people from lowering their guard against the virus. Cities are opening, businesses are returning their workers, and even New York City unvaccinated athletes and performers are allowed back.
“I’m trying to stay calm and I’m really grateful for these at-home tests because I had a COVID exposure last week,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “I was able to keep testing and I just felt so reassured to have the test on hand and not freak out like I did in Omicron.”
S3, E12: COVID Subvariant: Stay Vigiliant My Friends
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
I don’t think there’s a cause for panic just yet.
Zoe Rothblatt 00:11
I’m trying to stay calm. And I’m really grateful for these at home tests because I had a COVID exposure last week. And you know, I was able to keep testing and I just felt so reassured to have the test on hand and not freak out like I did in Omicron This time, I was just much more prepared to tackle an exposure than I did even a few months ago.
Steven Newmark 00:30
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:40
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:58
Yes, we do. And you can check them all out at ghlf.org/listen.
Steven Newmark 01:04
I particularly enjoyed listening to Getting Clear on Psoriasis, a podcast dedicated to explain the ins and outs of psoriasis.
Zoe Rothblatt 01:10
Yeah, I totally agree. It’s incredible that GHLF now has podcasts tailored to so many disease states. And the host, David Brandt, on Getting Clear on Psoriasis makes things well, you know, very clear. So Steven, let’s get into today’s episode. We’ll start as a listener comment. Are you ready?
Steven Newmark 01:27
I am ready.
Zoe Rothblatt 01:28
This one’s a little different. After our recent discussion about telehealth, some people wrote in letting us know what telehealth means to them. And this one is from Julie B who wrote, “I love it. When I’m bed bound, being able to reach a doctor and not having to impose extra stress, pain, and exertion on myself as amazing. In person consultations are still very important. But having that option certainly eases the mind.”
Steven Newmark 01:52
That’s great to hear. It’s really has proven to be a lifeline and going forward, people have recognized the ease with which you’re able to access your providers.
Zoe Rothblatt 02:02
What is in the news this week? The first thing on my mind is that I saw that the special enrollment period for Obamacare opened up. This is for low income Americans who miss signing up in 2022 for Affordable Care Act coverage, and they can now enroll in plans with $0 premiums through the federal exchanges website.
Steven Newmark 02:21
This expanded enrollment stems from the $1.9 trillion COVID relief package which was was enacted last year. In addition to the generous subsidies that reduced the premiums to zero or close to it, the law also allows folks to sign up outside of the traditional open enrollment season, which ended in mid January.
Zoe Rothblatt 02:38
And expanded health insurance is important always, but especially during COVID, it’s so important. And for our listeners, you can go to healthcare.gov for more info.
Steven Newmark 02:47
Also, we have some GHLF news, as we have the results of our latest COVID-19 Patient Support Program quick poll about mask wearing. And the overwhelming majority, over 90% of you, plan to wear masks in indoor spaces but plan to unmask around social settings with trusted loved ones. The poll also found that overall, more people feel comfortable to go without a mask outdoors, especially around people they know.
Zoe Rothblatt 03:08
That sounds like us, you know what we’ve been saying on The Health Advocates.
Steven Newmark 03:12
Totally.
Zoe Rothblatt 03:12
And from the poll, we saw that many are just evaluating it on a case by case basis, which is for sure what I’m doing. I always have my mask handy and just take a scan of who I’m around, how crowded it is, you know, what safety precautions are being practiced and decide what I feel is right.
Steven Newmark 03:27
I’m actually kind of excited. I just got in the mail. You know those duckbill N95 masks? I’ve been wanting one of those. These are the things that make me happy nowadays.
Zoe Rothblatt 03:35
Yes.
Steven Newmark 03:36
And they’re pretty awesome. You actually can breathe in them much better than with the other N95 masks and you can conduct a conversation without being as muffled so I’m very happy right now. And you know, the poll that we just talked about shows that many immunocompromised folks are still feeling ignored and judged as others move into a pre-pandemic normal. It’s hard not to feel left behind. So keeping those N95 masks, those KN95 masks handy is definitely gonna be our future.
Zoe Rothblatt 04:01
I know that people are also feeling judged for wearing the mask.
Steven Newmark 04:04
Yeah.
Zoe Rothblatt 04:04
Because it’s hard when people give you funny looks or make comments. You know, like, “the CDC says you don’t need to why are you wearing it,” and it’s for sure impacting mental health.
Steven Newmark 04:13
Absolutely.
Zoe Rothblatt 04:14
I mean, I don’t know what to say besides, you know, feel confident doing your own thing.
Steven Newmark 04:18
Yeah.
Zoe Rothblatt 04:18
Do what’s right for you, but it’s hard.
Steven Newmark 04:21
You just got to have confidence in yourself.
Zoe Rothblatt 04:23
Fake it till you make it.
Steven Newmark 04:24
Fake it till you make it. I don’t know. It’s like being a teenager. Dress the way you want to dress.
Zoe Rothblatt 04:27
Yeah.
Steven Newmark 04:28
Who cares what other people think of you. Forget that. You’re your own person.
Zoe Rothblatt 04:31
I agree. Another thing impacting our mental health is this new subvariant of Omicron known as BA.2 that you may have heard about.
Steven Newmark 04:39
It’s like the sequel from hell. Halloween Part 11.
Horror Voice 04:42
When the sunsets and someone this alone,
Steven Newmark 04:45
Just when we thought we were out, they pulled us back in.
Horror Voice 04:50
She kills
Zoe Rothblatt 04:53
So, BA.2 is 30% more transmissible than the original Omicron strain and, boy, do we know how transmissible that was. So that sounds a bit intense.
Steven Newmark 05:03
And we’re seeing rising numbers of BA.2 in Europe, Asia, and most troubling for us, is our wastewater. Yuck.
Zoe Rothblatt 05:09
Yeah, that’s certainly gross. But it’s also a good indicator of viruses roaming our community as viruses appear in wastewater even more than they appear on PCR tests.
Steven Newmark 05:19
Yeah, in Boston and New York, where they test wastewater, numbers of BA.2 are rising. For example, over the first 10 days of March, we saw double the number of COVID cases in the wastewater versus the first 10 days of February.
Zoe Rothblatt 05:30
It sounds scary, but remember, you know, the number in early February was very low. So doubling a low number still gets it to a low number,
Steven Newmark 05:38
Right. Still, not to be foreboding, but the ominous signs are there.
Zoe Rothblatt 05:42
And what makes this even scarier, unfortunately, is that we have removed so many protections. Last week congress nixxed a 15 billion in Coronavirus funding from a 1.5 trillion spending bill. The decision is certainly catastrophic. And as the White House has noted, its consequences will be seen quickly.
Steven Newmark 06:02
It’s like the bank hasn’t been robbed lately. So, we let the security guards all go home. The government is going to have to cut shipments of the monoclonal antibody treatments by about a third. In April, the government will no longer be able to reimburse healthcare providers for testing, vaccinating, or treating millions of uninsured Americans who are disproportionately likely to be unvaccinated and infected. By June, the government won’t be able to support domestic testing manufacturers.
Zoe Rothblatt 06:32
To add to all of what you said, as if it’s not bad enough, it can’t buy extra doses of antiviral pills or infection preventing treatments that immunocompromised people are really banking on and were already struggling to get. It will really need to scale back its efforts in order to improve vaccination rates in poor countries, which increases the odds that dangerous new variants will arise. And you know, if such variants arise, they’ll likely catch the US off guard because surveillance networks have been scaled back too.
Steven Newmark 07:01
Right.
Zoe Rothblatt 07:01
So it’s just this vicious cycle of all this happening. People need their booster shots, the government won’t have enough for everyone. And it’s kind of scary.
Steven Newmark 07:10
It is scary. Like I said, it’s like the bank sent home the security guards.
Zoe Rothblatt 07:14
Can we get the security guards back in?
Steven Newmark 07:16
Unfortunately, I’m not counting on it. I mean, that was the promise that some elected officials gave us was, “Hey, we’re gonna lower our guard. But don’t worry if the case is starting to rise. We’ll hold on to our mandates again, to do what we have to do.” But I’m personally just too worried that too many Americans love the phrase, “I’m over COVID. I’m over COVID. It’s done.” But my optimism, such as it is, is resting on the hopes that BA.2 won’t make as much traction in the United States as it did overseas.
Zoe Rothblatt 07:41
My optimism certainly rests on my N95 mask.
Steven Newmark 07:44
For sure. Now is the time to make sure you are wearing the masks. When others are not masked, it’s more important to wear the mask.
Zoe Rothblatt 07:51
Thinking about where BA.2 is right now, the surge in Europe seem to come after restrictions or loosen, like indoor masking. And as we know, there’s no longer indoor mask requirements here in the US for most areas. I’m asking indoors, like we said before from the poll results, you know most of our community is too, but from what we’ve seen, the US has lagged by in Europe by a few weeks. So it’s likely we can see an uptick in these cases soon.
Steven Newmark 08:16
Dr. Fauci said on television, it’s no time to declare victory because this virus has fooled us before. And we really must be prepared for the possibility that we might get another variant and we don’t want to be caught flat footed on that.
Dr. Anthony Fauci 08:28
Hopefully we won’t see a surge. I don’t think we will. The easiest way to prevent that is to continue to get people vaccinated and for those who have been vaccinated to continue to get them boosted.
Zoe Rothblatt 08:38
And the US Surgeon General echoed this by saying we should focus on preparation, not panic, and focus on what we do have. Vaccines, boosters, treatments.
Steven Newmark 08:47
The vaccines are really important because although 65% of Americans roughly are vaccinated, only about half of the people eligible for a booster have gotten one. So we really could be doing better on the booster front.
Zoe Rothblatt 08:58
And throughout the Omicron surge, you know, vaccines did remain highly effective against hospitalizations, even if like many people got Omicron. And researchers are seeing that vaccines remain effective at preventing hospitalizations for BA.2 which is you know, the most important when I think about what the vaccine can do for me, that’s up there. I don’t want to end up in the hospital.
Steven Newmark 09:18
Keep us out of the hospitals for sure. If you wanted to stay positive, so many people contracted Omicron during that last wave over the winter, that there is a high degree of natural immunity. The World Health Organization has said that infection with Omicron provides strong protection against infection with BA.2, the sub variant. So between the combination of recovery from Omicron and the vaccines, that means the US does have a high rate of immunity against Omicron. So I don’t think there’s a cause for panic just yet.
Zoe Rothblatt 09:45
I’m trying to stay calm. And you know, I know that I have all my tools to stay safe. I’m really grateful for these at home tests. I actually got my second round from the government and, Steven, they came in under a week this time. It actually really came in handy for me because I had a COVID exposure last weekend, you know, I was able to keep testing and I just felt so reassured to have the test on hand and not freak out like I did in Omiron when lines were around the corner, you know, the pharmacies didn’t have a stock. And it was nearly impossible to get the tests. And this time, I was in close contact with my doctor. And I was just reflecting on how much more prepared I felt to tackle an exposure than I did even a few months ago. Even though I’m feeling prepared, I’m not sure if I feel like we’re prepared as a whole. Like we mentioned before, people are over it and Congress cut funding, it’s hard to feel prepared as a whole.
Steven Newmark 10:33
And the aspects of the pandemic response that were cut, unfortunately, were probably already insufficient. The US never tested sufficiently, not enough people have been vaccinated as we know, treatments haven’t been widely available to the most vulnerable. It’s clear that these measures probably should have been strengthened, not cut and weakened further, but.
Zoe Rothblatt 10:50
It feels like now the burden is really on ourselves. Immunocompromised people have been feeling this all along, to be honest, the burden’s on ourselves to keep ourselves safe. And without funding, we can’t really depend on the availability of defensive tools against COVID. I’m going to continue staying in close contact with my doctor and just make a COVID plan together about you know, what comes next, what should we do.
Steven Newmark 11:11
You know, it reminds me of local governments, whenever the snow season passes, they decide to cut funding or the next year, they don’t put as much money behind snow plows or whatever it is to clear the streets like, “Hey, it hasn’t snowed in months, we’re fine, we’re safe,” then the snow emergency comes and you’re scrambling to find money in the budget for that kind of stuff. And you don’t want to be scrambling when the snow comes. The idea is you want to be prepared. I think that, Zoe, you and I are much more on the cautious conservative side of life and you prefer to stay prepared to be prepared. I said to someone the other day when I received my shipment of the masks, I got a lot of masks, I got some KN94s I got a K95s. I got a whole bunch. I spent about 200 bucks. And I said, “I really hope that this $200 was a waste of money. That I don’t have to use these masks.” I’d rather have them and have wasted that money so to speak, then then the opposite.
Zoe Rothblatt 12:04
Okay, think about preparation. Steven, what did you learn about today?
Steven Newmark 12:08
You know, I was thinking about the Boy Scouts a couple of times. Their Boy Scouts motto of be prepared. So, crossing my fingers that we are prepared or that we don’t have to be prepared because this wave never materializes.
Zoe Rothblatt 12:20
And I learned from our quick poll that, you know, most of our community is behaving the same as us and masking indoors and taking it off when they’re around trusted loved ones and feel more comfortable but for the most part were masking up.
Steven Newmark 12:32
Well, we hope that you learned something too. We’d love to hear from you about how you’re handling the new BA.2 potential wave. Send your email to [email protected] or better yet include a short video or audio clip.
Zoe Rothblatt 12:45
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 12:52
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 12:57
Well, everyone. Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll have more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 13:15
I’m Steven Newmark. We’ll see you next time.
Narrator 13:20
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, E11: COVID at 2: How We’ve Changed
We’ve passed a dubious anniversary we’d all rather forget. This month marks two years since COVID forced the world into a pandemic. In this episode, we look back at how life changed, and what changes may become permanent.
“Folks are really struggling with mental health issues two years in the pandemic,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “Even more so for our community with underlying conditions.”
S3, E11: COVID at 2: How We've Changed
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
Folks are really struggling with mental health issues two years in the pandemic.
Steven Newmark 00:13
Compounding that, it’s very difficult to find mental health practitioners.
Zoe Rothblatt 00:17
Even more so for our community with underlying conditions. I want to move on and not to care too but when you’re immunocompromised you really just don’t have that luxury.
Steven Newmark 00:26
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:37
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:41
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes listen to all of GHLF’s great podcasts in our podcast network. We have so many to choose from.
Zoe Rothblatt 00:57
And you can check them all out at ghlf.org/listen. And this week, we’ll give a shout out to Talking Head Pain, which is hosted by Joe Coe, who we’ve had as a guest on The Health Advocates. Shout out to Joe. Check out the recent extra episode, which features a leading migraine advocate who talks about his journey and how he overcame the stigma of migraine. Well, with that, Steven, let’s start with a listener comment as we always do. Are you ready?
Steven Newmark 01:23
I am ready.
Zoe Rothblatt 01:24
This one came in from Madison H., who wrote in telling us, you know, “I feel so silly being nervous about the rollback of mask wearing in my state. Mostly I’m just tired of feeling invisible. So thank you for creating a sense of community.”
Steven Newmark 01:36
I really love the use of the word community because that’s really important to us at GHLF. We’ve worked very hard to try and create that sense of community amongst patients with chronic illness. Really helps to deal with difficult circumstances in your life and particularly through the pandemic to know that there is a community of like minded folks, so great to hear from you, Madison. Thank you.
Zoe Rothblatt 01:56
Yes, thank you. And speaking of community, thank you to all our listeners for tuning in each week we’re blown away from all of you. So thank you so much. Seems like things have been looking up COVID wise here in the US. Cases are still low and hospitalizations are at their lowest point since last summer. But the good news isn’t the case for other parts of the world.
Steven Newmark 02:18
China has put several of its industrial hubs under lockdown to confront its worst Coronavirus outbreak in two years, and send tens of millions of residents into another lockdown.
Zoe Rothblatt 02:28
And we talked about this in our Olympics episode that China has the zero COVID policy and this outbreak is certainly testing that policy.
Steven Newmark 02:36
We’re also seeing a rise in cases in several European countries, which may mean the US will soon experience another spike as well.
Zoe Rothblatt 02:42
Because as we’ve learned in the pandemic, we just don’t know what’s around the corner. The virus can come back when things are looking okay, so definitely stay vigilant. The good news, we have our vaccines and boosters, which certainly help prevent serious illness and hospitalization.
Steven Newmark 02:58
And we have our masks, let’s not forget that. Even if others are taking them off, they still provide protection to you the wearer. Especially the N and KN 95 masks. And like we talked about on our last episode there are more free at home rapid tests available for order from the government.
Zoe Rothblatt 03:14
And perhaps the biggest news of all, it’s been two years since the World Health Organization declared COVID-19 a global pandemic. Steven, can you believe it?
Steven Newmark 03:23
Two years who would have thought? Unbelievable.
Zoe Rothblatt 03:25
Do you remember when we thought two weeks to flatten the curve?
Steven Newmark 03:28
Oh my gosh, I remember looking at the numbers thinking oh, we’ll be back by May. Maybe June.
Zoe Rothblatt 03:34
I know who would have thought. So, thinking about leaving the past in the past and looking towards the future, we’ve learned a lot in these two years what healthcare system changes are here to stay. Let’s start with something I appreciate during the pandemic which is telehealth.
Steven Newmark 03:49
Yep, I tried telehealth a few times before the pandemic and was generally unimpressed but the pandemic forced practitioners to up their game and make the telehealth visits more comparable to in person ones. Telehealth services skyrocketed as doctors offices limited in person visits amid the pandemic. The official declaration of a public health emergency eased long standing restrictions on these virtual services, vastly expanding Medicare and private health insurance coverage.
Zoe Rothblatt 04:13
I’ve really liked having telehealth as an option. I used it primarily during the first year of the pandemic and then started going back in person once I was fully vaccinated. I still like knowing the option is there if things do get bad or you know, it’s just a quick check in. It’s nice to have that capability just virtually talk to your doctor. And I’m wondering, you know, will this stick around?
Steven Newmark 04:33
So some of these changes are supposed to go away whenever the Biden administration decides not to renew the public health emergency, the PHE. The government funding bill that recently passed extends key services roughly five months after the PHE extends such as letting those on Medicare access telehealth services even if they live outside of a rural area.
Zoe Rothblatt 04:54
And I know that we at GHLF have been advocating to make these changes permanent. You know, the opportunity to see your doctor without the stress of getting to from an actual office is so important to so many. And when we bring it up in virtual meetings, state legislators really seem to be in favor for the most part and some even very eager to keep it up.
Steven Newmark 05:14
Even though the issue is bipartisan and very popular, it could be challenging to pass unless the measures are attached to some must piece pass of legislation in Congress. But there is reason for hope. We advocated for more telehealth before the pandemic and it would take up so much of our time just trying to explain what the heck telehealth was to legislators.
Zoe Rothblatt 05:31
But now everybody knows what telehealth is right?
Steven Newmark 05:34
Just about. There’s a huge advantage in advocacy, just having lawmakers understand what it is that you’re talking about. So it leaves me hopeful that telehealth can continue beyond the pandemic to the betterment of patients.
Zoe Rothblatt 05:45
Me too. I really hope so. I’m thinking about another big issue that was really highlighted during the pandemic was a reckoning on racial disparities.
Steven Newmark 05:56
Yes, and this was also an issue that we at GHLF focused on before the pandemic. In fact, few of us in public health were unaware of the racial disparities in healthcare and health outcomes. But COVID really pushed this to the forefront.
Zoe Rothblatt 06:07
Right. Hispanic, Black, and Native Americans are twice as likely to die from COVID than white people. And that’s according to age adjusted data from a recent Kaiser Family Foundation report. In short, the Coronavirus exposed the glaring inequities in the health care system. But the big question is will change come?
Steven Newmark 06:25
The hope is that as a country we reached a tipping point and yet any real systemic change will likely take time. But it can start with increasing the number of medical providers from diverse communities, making office practices more welcoming, and understanding biases. We address these issues for IBD patients, for example, in our podcast Gut Culture,
Zoe Rothblatt 06:44
Yes, you and your cohost Melodie help cover these issues so well. I would just add that it’s so important to provide all around support and care to people. Health disparities are so much about your environment, your support, and your access. So really thinking through how can we provide better and more affordable care and listening to BIPOC patients about their needs and not just assuming.
Steven Newmark 07:06
What else has changed, Zoe?
Zoe Rothblatt 07:08
Well, our language for one. We mentioned the flatten the curve before but you know, the Washington Post gave an interesting rundown of some terms that we never used before taking on new meanings. I’ll start with bubble, the most exclusive invite of the pandemic. We created small groups with others to combat loneliness and stop the spread of the virus.
Steven Newmark 07:28
What about zoom fatigue?
Zoe Rothblatt 07:29
Oh, man.
Steven Newmark 07:30
You ever heard that one before?
Zoe Rothblatt 07:32
Every day?
Steven Newmark 07:33
Yeah, everything went digital at the onset of the pandemic and millions of people began experiencing video call induced exhaustion.
Zoe Rothblatt 07:39
Another one here is six feet, the amount of social distance. Well, social distance, that’s one too. Necessary to reduce the transmission of COVID-19 and also the length of a moose. Which we now know because some health advisories got really creative with examples on how far we should stay apart.
Steven Newmark 07:56
Yeah, that’s another good point, though. You mentioned social distance. What does that even mean social distance two years ago, you would have been like, “What the heck are you talking about?”
Zoe Rothblatt 08:04
I know. I remember in the beginning, people kept saying social distancing. And I’m like enough with that phrase. I don’t want to hear it anymore. And now here we are two years later.
Steven Newmark 08:14
Well, what about this one? The almost casual search for outdoor dining?
Zoe Rothblatt 08:17
Oh, yeah.
Steven Newmark 08:18
So about 60% of dining restaurants expanded outdoor dining options in the last two years, according to the National Restaurant Association. So be it rain, sun, sleet or snow Americans took advantage of the alternative for a moment of normalcy to have some outdoor dining.
Zoe Rothblatt 08:33
I’ve loved outdoor dining here in New York City. They’ve created these like really impressive establishments on the street where parking typically and it’s so nice to have. Although at points in the pandemic, I sort of question this like, indoor outdoor thing at some point. I’m like, this is just a different kind of indoor. Is it safe? But I do hope they stay.
Steven Newmark 08:55
Yeah, it’s nice to eat outdoors for sure. I like it. It does feel safer. Even just other viruses. I don’t want to be around people.
Zoe Rothblatt 09:01
Yeah. Well, Steven, another one. What about to mask or not to mask?
Steven Newmark 09:06
That is the question.
Zoe Rothblatt 09:07
We made our masks, double masked, hunted down for N and KN 95s, and even myself got some fake ones. But today states are dropping the requirement and adopting more flexible standards based on community transmission rates rather than just universal mandates.
Steven Newmark 09:24
Yeah, in fact, 98% of Americans as of our recording live in areas where COVID-19 transmission rates are low enough that people can ditch their masks indoors, according to the CDC.
Zoe Rothblatt 09:34
We also got three COVID vaccines within the first year of the pandemic, just a huge feat, thanks to Operation Warp Speed, and that’s another term.
Steven Newmark 09:42
Yeah, that’s true. And speaking of scientific advancements, we have antiviral treatments for COVID. Both preventative and for if you test positive.
Zoe Rothblatt 09:53
In a more somber note, folks are really struggling with mental health issues. Two years in the pandemic has definitely hit an impact on our mental health.
Steven Newmark 10:02
Compounding that it’s very difficult to find mental health practitioners.
Zoe Rothblatt 10:06
Yes, you know, we’re certainly struggling with mental health and can’t seem to get all the help we need, even more so for our community with underlying condition who already are more likely to suffer from mental health issues. You know, we’ve said it before we’ll say it again, it’s especially hard when you live with an underlying condition. It really does feel like people are moving on and don’t care. And I want to move on and not to care too. But when you’re immunocompromised, you really just don’t have that luxury.
Steven Newmark 10:32
And it certainly takes a toll on our mental health. But know that you are not alone. And you have a community here with us. And we will keep on advocating.
Zoe Rothblatt 10:39
On the plus side of mental health, in these two years, I was able to spend more time with close family and loved ones, which was really nice. I also got my puppy Macintosh, who you all hear from every now and then. You know, without COVID I don’t know if I would have got a puppy. So sometimes it helps me to think about like, the positives and the silver linings we got from the pandemic.
Steven Newmark 10:59
Wow, good job, Macintosh. Glad to have you on board.
Zoe Rothblatt 11:02
I think I see him wagging his tail.
Steven Newmark 11:04
And for our listeners, we’d love to hear from you. What changes have you experienced in the past two years, and which do you think will remain permanent?
Zoe Rothblatt 11:11
And lastly, I’ll just say that we’re all really strong for a living through this. And we’ll continue to get through this next phase together, whatever it may bring. Okay, Steven, as we do at the end of every show, what did you learn about today?
Steven Newmark 11:23
I was brought back to the idea of what it was like two years ago before we heard some of these new phrases. And I guess I learned how many new phrases have entered the lexicon because of COVID.
Zoe Rothblatt 11:34
I know, right. Just another thing is thinking about telehealth and just being reminded that it was a temporary thing, and hopefully we can make it permanent. But sometimes we do need to keep advocating and bringing up these topics. Even if we’re not necessarily using it every day. It’s important.
Steven Newmark 11:52
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 12:02
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 12:09
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 12:14
Well, everyone thank you for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 12:33
I’m Steven Newmark. We’ll see you next time.
Narrator 12:38
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, E10: The Power of Virtual Advocacy
One of the best ways to improve health care in the United States is to educate lawmakers. And these days, conversations are made easy through Zoom. Recently, health advocates from the GHLF participated virtually in the Digestive Disease National Coalition’s Public Policy Forum. Their aim was to encourage the passing of the Safe Step Act, which would protect patients from insurance companies overriding doctor’s recommended therapies, and direct money to digestive disease research.
“Virtual advocacy has given us the ability to reach legislators in a way in which we previously weren’t able to,” says Corey Greenblatt, Manager of Policy and Advocacy at the Global Healthy Living Foundation.
S3, E10: The Power of Virtual Advocacy
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Corey Greenblatt 00:09
Virtual advocacy has given us the ability to reach legislators in a way in which we previously weren’t able to.
Steven Newmark 00:18
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:28
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:33
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:47
Yes, and you can check them all out at ghlf.org/listen. And Steven today, I’d like to call it your other podcast, Gut Culture. You and your cohost Melodie talk about inflammatory bowel disease, IBD patient journey, and, you know, specifically how the challenges of IBD are magnified for people of color
Steven Newmark 01:06
Thank you. More episodes will be coming soon. So get caught up on Gut Culture and stay tuned for more.
Zoe Rothblatt 01:11
Alright, so let’s start as we always do with a listener comment. This one came from an advocate from our 50 State Network and they said, “Love the episode where Zoe and Steven talked about masks and risks. It brought me comfort during this hard time.”
Steven Newmark 01:24
Good to hear from folks in our 50 State Network on that.
Zoe Rothblatt 01:28
So this week on The Health Advocates, we have a special guest here, Corey Greenblatt, who’s GHLF’s Manager of Policy and Advocacy. Hey, Corey, how’s it going?
Corey Greenblatt 01:36
It’s going great. Really happy to be here. Happy to join you again.
Steven Newmark 01:40
Excellent, Corey. We’re going to talk to Corey about recent advocacy work that the three of us did in Washington on Capitol Hill with the Digestive Disease National Coalition or DDNC.
Zoe Rothblatt 01:49
But first we have some news updates for our community.
Steven Newmark 01:52
I guess the first bit of news is that Hawaii is the last state to announce that it will drop the indoor mask mandate.
Zoe Rothblatt 01:58
And this is in line with the CDC recommendation that we discussed in the recent episode that suggests that most Americans do not need to wear a mask in indoor public spaces. There are special recommendations for immunocompromised so definitely talk to your doctor about what’s right for you in terms of masking, especially as all of the states end the mask mandates.
Steven Newmark 02:18
For those still worried, the masks are helpful. The particularly the KN masks and the N masks. Zoe and I, we’re still masking up. The Health Advocates are still wearing our masks.
Zoe Rothblatt 02:28
Yes, we are.
Steven Newmark 02:29
Cases are still going down, which is good news, of course.
Zoe Rothblatt 02:32
And speaking of safety precautions, the Biden administration announced that a second round of free COVID tests will be available. So there’s another round of four tests per household through the same US Postal Service Program.
Steven Newmark 02:45
Excellent. I’m starting to stuck up, which is good because I haven’t had to use my tests much recently. And these tests are apparently going to ship faster than the last ones, which is good. As a reminder, you can go to COVIDtest.gov, or call 1-800-232-0233 to order your at home tests
Zoe Rothblatt 03:04
And another COVID related update, the White House announced the “Test to Treat Initiative” which is these one stop locations where you can get tested for COVID. And if you test positive, you can get antiviral medication.
Steven Newmark 03:17
This is a great program that aims to speed up the process of getting COVID drugs for high risk patients who need to start treatment quickly for it to work. There are two COVID treatment pills currently authorized by the FDA. The pills are antivirals and work by stopping the virus from making copies of itself.
Zoe Rothblatt 03:33
Yeah, so you know, instead of saying I have symptoms, getting a test and finding out the result, calling your doctor to get the medication, the doctor writes the script, you have it sent over to the pharmacy and you have to go pick it up, what this test to treat, is saying that you can now do it all in one spot.
Steven Newmark 03:49
Excellent. As we mentioned, we have a special guest with us today, our colleague, Corey Greenblatt, who is GHLF’s Manager of Policy and Advocacy.
Zoe Rothblatt 03:56
Hi, Corey, and welcome back to The Health Advocates.
Corey Greenblatt 03:59
Very excited to talk about some of the stuff we did on Capitol Hill this week. Well, virtually on Capitol Hill and some of the advocacy stuff we’re doing GHLF.
Zoe Rothblatt 04:07
So we recently participated in the Digestive Disease National Coalition’s Public Policy Forum, which is an event held each year, and virtually since COVID, which brings together advocates, healthcare providers and industry representatives to advocate for key legislative issues impacting patients with digestive diseases.
Corey Greenblatt 04:27
Members of the coalition all gathered together and we met with federal legislators, many of them in our group met with legislators from New York State, but there were different state delegations that were meeting with legislators from everywhere that you can imagine; California, Wyoming, Montana, Florida, Texas, everywhere. And that’s because these are issues that affect patients across the entire country. They don’t care about state borders, step therapy is affecting patients in every state. And so it’s important to get all of these legislators on hand with all of this. So with all these meetings, how are you both feeling after this?
Steven Newmark 05:00
Well, I felt a little nostalgic for the days of actually going to Capitol Hill in person. I kind of miss it. You know, it made me realize with all the negative press and the negative comments, you hear from perhaps friends and others about what goes on in Washington, that there really is an opportunity to make progress for things that matter to people. And in our particular instance, for things that matter to patients.
Zoe Rothblatt 05:22
For me, I always find these types of days tiring, but energizing. It’s hard because you’re on the Zoom or in person, and you have to remember your talking points, and you’re going from meeting to meeting. So it does get tiring. But when you hear other patient advocates telling their story and talking about why it’s important to share patient stories, you see the legislator, the legislative aide, nodding along and asking what they can do for help. It’s just really energizing to know that there’s a group of people that want to affect change.
Corey Greenblatt 05:51
I couldn’t agree more, I wthink tiring is definitely a big part of it. I think, early in the pandemic, everyone had this idea that just because we’re doing these meetings on Zoom, they’re easy. They’re not as tiring, you’re not running around Capitol Hill wasting energy going from office to office. But the fact of the matter is, is that they are very draining, they can be very tiring. And yet, at the same time, you mentioned patient stories, I think that’s a great part of it, too, because hearing these other advocates stories, is incredibly inspiring. And it makes me realize that the overwhelming feeling I always get from these days is that I’m always grateful. I’m grateful that we are able to participate in these things. I’m grateful that we’re able to share our voices in these ways. I’ve always considered myself to be a very kind of outspoken person. But being in these meetings and just kind of listening to others share their story is one of the highlights of my job every year. And I’m always very thankful to the DDNC for giving us the opportunity to do this with them.
Steven Newmark 06:48
So let’s jump into it. There were a few topics in which we were advocating for. The first is step therapy, also known as fail first. Mandates that patients try and fail medications preferred by their insurance company before the health plan will cover the treatment originally prescribed by their doctor.
Zoe Rothblatt 07:03
Step therapy is a huge issue for patients. We often hear from people in our community living with chronic disease how harmful step therapy is to them. And it’s just essentially the insurance company coming in and ignoring the patient’s unique circumstance and medical history. It’s sometimes you know, hard enough to decide on the right treatment with your doctor. And then all of a sudden, this outside party is saying no, you can’t have it.
Corey Greenblatt 07:25
Yeah, and incomes the Safe Step Act, which would establish common sense protocols and protections for patients, and would establish these step therapy protocols that would really benefit patients across the country. The bill does a couple of things. Number one, it allows a provider or a patient to request an exemption to a step therapy protocol. Number two, it requires a quick review of this request by the insurance company so they can’t drag their feet. And what this inevitably kind of leads to is that it allows a doctor to say that their patient was already tried and failed on a medication and they should be- sorry, let me deal with my dogs.
Steven Newmark 08:02
Usually we hear Zoe’s dog Macintosh. But now it sounds like we’re hearing Corey’s dog.
Corey Greenblatt 08:06
Yeah, that was my dog, Walker. He’s quite the the vocal participants, when I’m on these calls. An anecdote that kind of can break down step therapy a little bit better so people might understand it. We’re in the day and age where when we sign up for a phone contract, we decide I want to get that iPhone or what that Android is. Step therapy is the equivalent of the phone company saying, “Hey, I know you want that iPhone, we’re going to make you try this flip phone first, because it’s cheaper, and it’s older, and see if that works. And if that works, you can use that and we’ll pay for that. If it doesn’t work, then we’ll give you the iPhone. But first, you got to try and fail on the flip phone.” And that is the equivalent of what step therapy is for patients medications.
Steven Newmark 08:48
That really simplifies it,
Corey Greenblatt 08:49
It really does. And that I think, just show the importance of why the Safe Step Act needs to get passed. Zoe and I were very fortunate to met with a representative who was a freshman representative from Long Island, who had not really known about the issue and wasn’t aware of it. And so we were able to really give them a good intro into what step therapy was. This is a bipartisan issue, so it’s not something that is a very polarizing issue. And it seemed like we were able to kind of light that spark to potentially get him to join on and add support to it. So those are the kind of results that we always kind of hoped for from these meetings.
Steven Newmark 09:24
What was the reaction when you talk about it, and you break it down so simply?
Corey Greenblatt 09:28
The first question that we normally get is how frequent is this? How common is this problem. And something that Zoe brought up a number of times that I thought was very important was this is an issue that spans countless disease areas. I have diabetes, I have had to deal with step therapy. We had patients who had IBD issues who they’ve had step therapy stories to tell. We at GHLF have worked with migraine patients who have had to deal with step therapy. It’s not an issue that singularly affects one community. And so when we start to talk about the span of the impact that these protocols have on patients, it really is kind of amazing to see the realization on these aids and see that what they have been told oftentimes by the insurance companies that this is a small issue is not actually true. And that this is an issue that affects hundreds of thousands if not millions of patients around the country every day.
Zoe Rothblatt 10:25
I would also say that it’s nice, because we join the DDNC every year. So we’re often meeting with people we met last year, who are familiar with the issue and, and it’s nice, you know, to hear updates on their end about progress or what they’re thinking about the bill and really get insights on the challenges that they’re hearing so then we can address them and continue to work with them year over year to get things passed.
Steven Newmark 10:48
This is a piece of legislation that we’ve been advocating for, along with many other patient advocacy groups for several years, now. I also like to use this as a good example of how progress is made, how policies are enacted. And what I mean by that is, it’s very rare to say, hey, we have XYZ policy that can improve the lives of people, can you introduce a bill and get it passed. The much more common route is you have the policy that you want to enact, you get a few legislators to sign on to put together a piece of legislation. And in this case, it happened several years ago. And it takes several years, several election cycles. But it starts to build support. And it’s certainly moving in the right direction each year. I’m more confident it will become law.
Corey Greenblatt 11:31
I couldn’t agree more. My confidence is growing, there are over 100 co-sponsors in both chambers, which means that about 20% of DC legislators are signed on as a co-sponsor of this bill, which is amazing. And it shows how amazing the growth is. But it also shows how difficult it is to get legislation passed in DC. Because if you have this many people who are signed on who are, it’s a bipartisan support in both chambers, and yet, it still hasn’t made it into law. It shows how difficult these things can be. So it’s not giving me any kind of concern that it’s taking so long. It’s really a hopeful experience to kind of see it continue to grow in support, and we just need to keep going in that direction.
Zoe Rothblatt 12:19
So you know, going back to our meetings this week, you know, we pointed out the harm this does to patients, physically and emotionally and this I mean step therapy protocols. And we heard stories from people mentioned, you know, just like how much time was wasted trying to get the right medication. And when you hear that you just are like, it’s a no brainer, we got to pass this thing.
Corey Greenblatt 12:40
Yeah, I completely agree. And that’s why most of our meetings, the big thing that we talked about was the Safe Step Act. But it wasn’t the only thing we discussed in our meetings. We also spent a large portion of it advocating for increased funding for digestive disease research and public health programs. This funding is important for the prevention, education, and public health awareness for a variety of chronic diseases that currently do not have dedicated resources. So it was a very important topic for us to speak about as well.
Steven Newmark 13:09
And just to pivot in terms of what our listeners can do themselves. I think it’s so important for elected officials to hear directly from patients to know about our patient journeys. What it is that we go through. We conduct these meetings with DDNC, it’s a combination of doctors and patients. And it’s important for legislators to hear from doctors. But there’s nothing like hearing from a patient. If nothing else, just to get your story implanted into brains of elected officials is so critical.
Zoe Rothblatt 13:38
Like the elected official can always look up the bill later. And they have experts who know how to read policy. But, you know, hearing that patient story, they don’t have that on their team. So getting that through is so important. I was just thinking about what would be my best piece of advice for virtual advocacy. For me, it’s reviewing my talking points and practicing before always helps me. It can get nerve racking when you go to talk. The goal is just to get that story and emotion across and it’s okay if you need to read and review your materials. And you could also follow up and send those afterwards.
Corey Greenblatt 14:10
For me, I think a tip to remember for virtual advocacy and this might seem funny. If you’re nervous in public speaking, one of the biggest tools that virtual advocacy has presented is the ability to treat it like a mirror. Look at yourself while you’re speaking. Talk to yourself, advocate to yourself, it looks the same to everyone else on Zoom. It looks like you’re still looking at the camera. But it takes away a huge amount of the nerves that patients might feel when dealing with this because again, you’re just talking to a mirror you’re sharing your story with yourself. And I think it’s one of the biggest benefits that virtual advocacy has given us. Also, virtual advocacy has given us the ability to reach legislators in a way in which we previously weren’t able to because what used to take trips to DC or state capitals and make patients take a day off of their work in order to go do these things. Now they can do this during their lunch break. They can do it during 20-30 minutes with advocates while an advocate is in Texas and the legislators in DC. The tip I would have, join us at the 50 State Network, we will help you pick legislation that is either local or federal legislation that you might be able to speak on. We will help you formulate your thoughts so that you can get them into testimony or comment letters, we will put you on the path to being able to utilize your voice in a effective way. And we’re always looking for more patients to work with,
Zoe Rothblatt 15:33
Well, as we do at the end of every show, Steven, what did you learn about today?
Steven Newmark 15:37
I guess it was less of a learning and more of just a remembrance, if you will, of nostalgia for being in Washington and talking with elected officials. It sounds hokey, but doing good for people. So it was a nice episode from that perspective.
Zoe Rothblatt 15:49
I couldn’t agree more. And I learned that we need to have Corey on more often.
Corey Greenblatt 15:54
Great, really happy to be here.
Zoe Rothblatt 15:55
He comes in with these analogies that just makes everything so simple and easy.
Steven Newmark 16:01
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:12
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:20
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 16:24
Well, everyone, thank you for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts. And hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 16:42
I’m Steven Newmark. We’ll see you next time.
Narrator 16:48
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, E9: Calculating Risk, Staying COVID Safe
As the country eases mask mandates, people are now balancing the risk of contracting and transmitting COVID with their decision to let down their guard. For the immunocompromised, there remains caution, concern, and sometimes fear.
“Let’s also remember that mask optional doesn’t mean no mask. You can still wear a mask if you want to. I certainly will,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “The Health Advocates are masking up!”
S3, E9: Calculating Risk, Staying COVID Safe
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
Let’s also remember that mask optional doesn’t mean no mask. You can still wear a mask if you want to. I certainly will.
Steven Newmark 00:15
Me too.
Zoe Rothblatt 00:16
Great! The Health Advocates are masking up.
Steven Newmark 00:21
Welcome back to The Health Advocates, podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:31
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:36
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions and to live your best life. But before we get started, we want to make sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:49
Yes, and you can check them all out at ghlf.org/listen.
Steven Newmark 00:54
One of my favorites, for sure is your podcast on biosimilars. The term biosimilar is so strange but you and your cohost Conner do a great job of explaining what biosimilars are and how they help patients.
Zoe Rothblatt 01:05
Well, thank you, Steven. Biosimilars are still a new-ish therapy, and we work to help patients make sense of it all. Speaking of making sense, let’s start with a listener comment. Are you ready?
Steven Newmark 01:15
I am ready.
Zoe Rothblatt 01:16
So David Z wrote, “Very interesting and informative. Love the hosts.”
Steven Newmark 01:21
Great. I love the hosts too. And I also think I’m very interesting and informative.
Zoe Rothblatt 01:24
Ditto.
Steven Newmark 01:25
I’m just joking, of course. But thank you, David C. We appreciate it.
Zoe Rothblatt 01:31
So Steven, what is happening this week? It feels like a lots going on.
Steven Newmark 01:35
Yeah, it does as if it couldn’t get any stranger or more stressful. Vladimir Putin has invaded Ukraine, a nation of 44 million people
Zoe Rothblatt 01:43
Just when I thought it was safe to think of non COVID thoughts. Oops, here comes this.
Steven Newmark 01:48
I know. At the same time, I personally have been taking strength and solace from the fierce resistance of Ukrainian people. And the fact that most of the world is coming together to protect this small democracy.
Zoe Rothblatt 01:59
Me too. Also in the news this week, new research has come out which points to a Wuhan market as the origin of the pandemic.
Steven Newmark 02:06
Yes, we’ve known for a while that the virus was first detected in Wuhan at the end of 2019. But scientists have been looking into where it originated, which still remains a mystery. Researchers have said that the virus originated in bats. There’s a theory about it coming from a laboratory league. And now these two preliminary studies have said that it probably originated in animals and spread to humans from a seafood market in Wuhan.
Zoe Rothblatt 02:28
So these studies have not been peer reviewed yet. But from what I read, it’s the strongest evidence yet about the source of the pandemic.
Steven Newmark 02:35
Right and getting to the bottom of where Coronavirus originated is important for prevention of future pandemics. It still doesn’t absolve the Chinese government from their failure to alert the world in a timely fashion about COVID-19, of course.
Zoe Rothblatt 02:47
For sure, but hopefully, you know, if we figure it out, we can stop something like this in the future. Steven, there’s more healthcare news. It was a busy week. We also had three recent developments for older adults and healthcare access. The first being that a federal court ruled recently that if Medicare declines to pay for your rehabilitation in a nursing home after you’ve left the hospital, this would happen because they change your status from inpatient to outpatient. You can now appeal that decision. But Medicare does require three consecutive days as an inpatient for you to be eligible for nursing home coverage. But this definitely expands some of the coverage for older adults in nursing home care.
Steven Newmark 03:26
The second is that California eased Medicaid qualifications. California estimated asset limits for older people trying to qualify for Medicaid. In July the asset limits rises to $130,000 for an individual and another 65,000 for each family member.
Zoe Rothblatt 03:41
And lastly, the Social Security Administration has finally announced that it will reopen over its 1000 local offices, which for the most part have been closed since the beginning of the pandemic in March 2020. And this is really important for our community because you can apply online for supplemental security income or SSI, which helps many in our community and seniors who are low income.
Steven Newmark 04:03
Yeah, and I should also mention President Biden has announced Ketanji Brown Jackson as his nominee to replace Stephen Breyer on the Supreme Court. She hasn’t done a ton of rulings or work in the healthcare space. She oversaw a somewhat wonky case ruling in favor of Massachusetts hospitals in a challenge to how the Department of Health and Human Services calculated Medicare disproportionate share hospital payments. Last summer she was part of a three judge panel that allows the CDC to continue their eviction moratorium, so it’s really tough to predict our healthcare rulings, generally. We should also mention President Biden this week gave the annual State of the Union address.
Nancy Pelosi 04:39
Members of Congress, the President of the United States.
Steven Newmark 04:44
He did touch on some points on healthcare he spoke about lowering drug pricing. Specifically he called for Medicare to negotiate drug prices.
President Joe Biden 04:52
Let’s let Medicare negotiate the price of prescription drugs. They already set the price for VA drugs.
Steven Newmark 04:59
And he called A $35 monthly cap on insulin.
President Joe Biden 05:03
So everyone can afford it.
Steven Newmark 05:05
And perhaps the biggest news of the week for us is that the CDC loosened its masking guidance.
Zoe Rothblatt 05:10
Right, right. All good stuff. We spoke about loosing masking guidance a few episodes ago.
Steven Newmark 05:16
The new guidance is a bit different in that until now, we’ve looked at cases of COVID in the community as a guide. But this new CDC guidance uses a system that characterizes counties as low, medium or high risk for poor outcomes. And the CDC recommends for people in high risk areas to wear a mask in public indoor settings. And under the new system, more than 70% of the US is in an area with low or medium community risk right now, which means that most Americans don’t need to wear a mask under this recommendation.
Zoe Rothblatt 05:45
And this guidance is a little bit different for immunocompromised and I guess it’s nice that immunocompromised aren’t being ignored in the new guidance. So often throughout the pandemic it’s been sort of vague for us and it’s nice to have specific recommendations, even if many do feel left behind as restrictions are loosened.
Steven Newmark 06:02
So true. We at GHLF have been poring over info during the pandemic trying to get the latest research out to our community because so much of the conversation didn’t have specifics for the immunocompromised.
Zoe Rothblatt 06:12
Here’s what it is in the new guidance. In a medium risk area, the CDC recommends that if you are immunocompromised or at high risk for complications from COVID, you should definitely talk to your health care provider about additional precautions such as wearing masks. And if you live with or have social contact with a high risk person and you’re in this medium risk area, you should consider testing before getting together and wearing a mask indoors. So, you know, similar to how things have been. Then, if you’re in a high risk area and you’re immunocompromised, you should wear a mask or respirator that provides you with greater protection. So, you know probably those 95 masks we’ve been talking about on here. I think this just means that generally you should wear these masks versus for not high risk individuals it’s just recommended for indoor public spaces in a high risk area.
Steven Newmark 07:00
So let’s jump into this. How did we get to this point? Well, as we said CDC relaxed its mask guidance. Even before the CDC’s change states that had been deemed very conservative when it came to masks like New York and California began removing the mandates. For some this is a welcome relief, they feel sufficiently protected without the masks. They feel that masks have been difficult for their children or for themselves or both, and they are ready to move on. But for others and in particular the immunocompromised ,that’s a group we focus on for our show, the move is scary, or at least a bit uncomfortable.
Zoe Rothblatt 07:33
It’s definitely scary. You know, we’ve spoken about how our voices are being drowned out, it’s easy to feel in the current moment that these fears are basically being dismissed. Everyone’s expected to want to return to this place of normalcy. And if it’s hard to get there, though, it can feel isolating. But today we want to talk about how those of us who may be scared could approach this new change.
Steven Newmark 07:55
Several episodes ago, we addressed the move from a pandemic to the endemic phase. And today we’ll talk a bit more and hopefully offer some reassuring items for our listeners.
Zoe Rothblatt 08:04
You know, let’s try to stay away from arguments about masking policies.
Steven Newmark 08:07
Definitely,
Zoe Rothblatt 08:08
Let’s just, you know, focus on the fact that this is happening and how can we process this and continue to live safely?
Steven Newmark 08:14
Well, we’ve all become more savvy at processing risk in the past two years. Our particular challenge, however, has been thinking through the risks that are small but not zero. We aren’t really well calibrated to processing a 1 in 1000 risk versus a 1 in 10,000 risk.
Zoe Rothblatt 08:29
Yeah, I’ve frequently relied, both personally and in writing, on comparative risk. That is, you know, comparing the risk of COVID to another risk that most people are comfortable taking, like example, the flu or you know, getting in a car and driving even.
Steven Newmark 08:43
Right, right, I saw an economist that I follow often, Emily Oster from Brown University, describe it this way: we can think about the infection risk as the chance that you will come in contact with someone with COVID multiplied by the chance that you get infected. So let’s call these two numbers a and b. Thus, the risk is A times B.
Zoe Rothblatt 09:02
And over the past year plus there have been many changes that alter both a and b. A, you know the chance that you come in contact with someone with COVID has been higher during surges has probably moved around with changes to you know, testing surveillance system and stuff like that, and B is the risk of you’re getting COVID from another person at a particular setting. And that’s moved around with, you know, ventilation improvements, for example, and with the transmissibility of the virus. During the Omicron wave, this number was of course larger in all settings.
Steven Newmark 09:34
And the removal of mask mandates effects B, of course. The goal of wearing masks is to lower the viral transmission. The result of removing masks from requirements should lead to an increase in that B number if you will. However, a randomized trial in Bangladesh estimated at a 10% reduction in symptomatic COVID after the encouragement of masks. Analysis of the impact of cloth masks on aerosol transmission in more lab based settings was suggested perhaps masks leads to a 50% reduction in risks if both people are wearing them.
Zoe Rothblatt 10:04
So, you know, let’s go with that upper bound number here to be conservative. 50%.
Steven Newmark 10:09
Yes.
Zoe Rothblatt 10:09
This would mean that when the masks are removed, the transmission rate doubles.
Steven Newmark 10:14
Correct.
Zoe Rothblatt 10:14
It seems scary. Now the risk of infection seems to be doubled. Oh, no. But you know, it may not be so scary because what has prompted the removal maths is a decline in the case rates.
Steven Newmark 10:25
Right. So where we live, New York City, at the peak of Omicron in January, the daily case rate was about 500 individuals per 100,000 residents. It’s now down to 24.
Zoe Rothblatt 10:37
Wow, that’s a big drop.
Steven Newmark 10:38
Big drop. So this means that the risk of any given person having COVID has reduced by a factor of about 20. So even if the risk of infection doubled with the removal of the masks, the overall risk was still down by a factor of 10.
Zoe Rothblatt 10:52
Well, you know, that certainly makes me feel slightly better. These are good numbers to be hearing. I mean, nothing’s going to put me at total ease. But it’s helpful to hear numbers like this. And of course, the same argument turned on its head is why it may ultimately make sense to return to masking during future stages of surges of cases.
Steven Newmark 11:11
Absolutely. A fair response, of course, is that maybe when you reflect on this, you generally still think that the risk is too high. Masks feel like something we can control in contrast to the COVID rates, which don’t feel like something we can control. If your goal is to have the overall A times B infection risk be as low as possible, the removal of masks gets in the way of that. But, we are where we are. And people want to take the masks off. And politics and policy makers listen to the people. And keeping that B number as low as possible is hard for society to tolerate when the A number is also low.
Zoe Rothblatt 11:44
Let’s also remember that, you know, mask optional doesn’t mean no mask. You can still wear a mask if you want to. I certainly will.
Steven Newmark 11:51
Me too.
Zoe Rothblatt 11:52
Great! The Health Advocates are masking up. You know, this is really important because one way masking is still extremely effective. If I have my mask on, I’m still protecting myself. And the bottom line from various studies is that, as we’ve discussed in the past, if you’re wearing these 95 masks, the KN95 or the N95. You’re very protected from infection, even if somebody around you is unmasked.
Steven Newmark 12:15
Right. So at this moment, you have the capacity with your own actions to lower transmission risk, even if everyone else is doing nothing. So your own personal risk can be lowered by wearing these masks.
Zoe Rothblatt 12:25
Reassuring. But well, maybe it’s a little reassuring. I’m still a little nervous as the masks come off. But it’s something and I love this data that you’re pointing to.
Steven Newmark 12:34
Look, part of what is scary about the removal of masks is that they’re so visible that it feels like a huge change. When seeing someone without a mask, I admit that it’s a little jarring. Even though I mask myself nearly all the time and I’ve had three vaccine doses, it still scares me. Hopefully the data that we’ve talked about relaxes folks a little bit, either to be comfortable recognizing that the drop in case rates really does lower the overall risk tremendously, or in recognizing that you can still focus on your own protection.
Zoe Rothblatt 13:00
And I’ll just add that a very real fear for our community is about ending up hospitalized and in serious condition from COVID, which this fear may be amplified as COVID restrictions are loosened and the masks come off. But a new study did bring some good news for us. It found that the third COVID vaccine offered significantly better protection against hospitalization for immunocompromised people than just simply having the first two doses. I’ll say that this study was conducted before the Omicron surge. So, you know, the results may not be exactly applicable to the current situation but still really encouraging.
Steven Newmark 13:36
Encouraging for sure. And now we have the fourth those two for the immunocompromised, so we will have to wait and see the research there. But this is very promising.
Zoe Rothblatt 13:44
All right, Steven, we’re coming up on the close of our show. What did you learn about today?
Steven Newmark 13:48
Well, I was glad to hear just now from you about the new studies about reduction in hospitalizations for those who have three shots, three vaccines, so that was good to hear.
Zoe Rothblatt 13:57
And it was reassuring for me to walk through the data with you about cases are lower. What happens when the masks come off, we may be okay.
Steven Newmark 14:07
Yes, and we hope you learn something too. We hope maybe you’re a little bit more at ease as the restrictions are being listed. We’d love to hear about you, about any thing that’s going on in your world. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 14:23
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 14:30
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 14:34
Well, everyone thank you for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 14:52
I’m Steven Newmark. We’ll see you next time.
Narrator 14:57
Be inspired, supported, and empowered This is the Global Healthy Living Foundation Podcast Network.
S3, E8: mRNA: COVID and Beyond
mRNA vaccines have provided valuable protection against COVID. Now, researchers say they can also be used to create a variety of vaccines and treatments in less time and at lower cost than traditional methods.
“The mRNA technology has been known for decades, but it was never fully realized until this crisis. And this new technology is currently being studied in cancer therapies, cystic fibrosis, heart disease and rare genetic conditions,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S3, E8: mRNA: COVID and BEYOND
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:09
The mRNA technology has been known for decades, but it was never fully realized until this crisis. And this new technology is currently being studied in cancer therapies, cystic fibrosis, heart disease and rare genetic conditions. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:34
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:39
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes listen to all of GHLF’s brilliant podcasts. We have so many to choose from.
Zoe Rothblatt 00:53
Yes, we certainly do. And you can check them all out at ghlf.org/listen.
Steven Newmark 00:59
Definitely check out Getting Clear On Psoriasis, a show about what it takes to live with psoriasis.
Zoe Rothblatt 01:04
Yep, that’s a great one. Definitely check it out. Steven, let’s start as we always do with listener comment. Are you ready?
Steven Newmark 01:10
I’m ready.
Zoe Rothblatt 01:11
This one is from corecore9222 and they wrote, “Great podcast. Engaging hosts and timely topics. Highly recommend.”
Steven Newmark 01:19
Highly recommend. Excellent. I recommend you corecore9222. So let’s get into it.
Zoe Rothblatt 01:25
Before we jump into today’s discussion, I do have some updates for you and our listeners.
Steven Newmark 01:29
What’s new?
Zoe Rothblatt 01:30
My free COVID at home tests arrived, the ones from the government.
Steven Newmark 01:34
Nice. What did you get?
Zoe Rothblatt 01:36
One small box came and there’s four test kits in their. Course they’re rapid, the results come in 20 minutes. And I’m just glad to have these as mask mandates are being rolled back, it’s good to know that I have a supply of COVID tests on hand.
Steven Newmark 01:49
Yes. And for our listeners, if you haven’t ordered yet, you can go to COVIDtest.gov, or call 1-800-232-0233 for help placing an order.
Zoe Rothblatt 02:04
So Steven, are there any other COVID updates this week?
Steven Newmark 02:09
California became the first state to formally shift to an endemic approach to COVID.
Zoe Rothblatt 02:12
Interesting. So you know, what does that really mean?
Steven Newmark 02:15
Well, first and foremost, I should say as California goes, so goes the nation. California, as many folks know, is the world’s fifth largest economy. So when California speaks, others tend to follow.
Gov. Gavin Newsom 02:25
What we’re announcing here today is about turning a page, moving from this crisis.
Steven Newmark 02:29
Governor Gavin Newsom said that the plan going forward emphasizes prevention and quick reaction to outbreaks over mandated masking and other business shutdowns.
Gov. Gavin Newsom 02:39
People are desperate to get back to whatever semblance of normalcy they vaguely may remember, but they also need to know that we have their back, we’re going to keep them safe. And we’re going to stay on top of this, that we’re not walking away.
Steven Newmark 02:49
But unvaccinated individuals will still be required to wear masks in indoor settings. And if there is a surge in cases, state officials could reinstate mask mandates.
Zoe Rothblatt 02:58
Okay, so it isn’t like they just, you know, turn the switch on COVID. It sounds like they’re moving out of this crisis phase and into a phase where I guess we work and just live with this virus.
Steven Newmark 03:08
Right. And of course, this has implications for our community who live with chronic disease and may be at high risk for complications from COVID.
Zoe Rothblatt 03:15
Yeah, and, you know, the hope is we aren’t left behind as officials evaluate and change policies around COVID precautions, but it does feel like we’re often forgotten and left out of the conversation. So you know, Steven, we’ll have to keep advocating and making noise for our community.
Steven Newmark 03:30
Exactly. Switching gears just a little bit, I’ve been thinking about the advancements made during COVID, specifically the mRNA vaccines, which is the technology that we haven’t used before.
Zoe Rothblatt 03:41
It’s so true. You know, it’s really amazing how the vaccines have helped billions of people around the world stay safe from COVID. And just even more remarkable to think that we didn’t have this technology in use until now.
Steven Newmark 03:53
Right, the mRNA technology has been known for decades, but it was never fully realized until this crisis, and the vaccine field is forever possibly transformed because of this advancement.
Zoe Rothblatt 04:03
Okay, I’m not a biology expert.
Steven Newmark 04:06
Nor am I, but that’s okay.
Zoe Rothblatt 04:08
Public service announcement there. But, you know, just think about how the vaccines work. So traditional vaccine technology works by using an inactivated or weakened virus to get the body to build up an immune response. And then this new mRNA technology works a bit different in that mRNA basically carries genetic instructions from DNA to the body cells to make proteins. And for the vaccine, you know, this means that that mRNA could send messages to create proteins that are similar to ones found in the virus. So then your immune system is able to protect from the actual virus because it has this information now.
Steven Newmark 04:46
Exactly. I think the way I would describe it in laypersons terms because I’m not a biologist.
Zoe Rothblatt 04:51
Okay, let’s hear it.
Steven Newmark 04:52
It’s kind of like giving your body the instruction manual for how to fight a disease whereas the old school vaccines, let’s call them, are essentially, as you said, either giving you a weakend live version of that virus or a dead version of the virus, which is a different way of teaching your body how to fight. But this is more like, “Hey, here’s the instruction manual. Now you know what to do.” Also mRNA is faster to develop as well.
Zoe Rothblatt 05:14
From what I understand also, with the mRNA technology, it’s easy to tweak this genetic sequence or you know, information blueprint that you’re talking about. So it’s like an ideal technology for a pandemic or outbreak when you’re just trying to figure it out on the spot, and you can with relative ease test what information and roadmap is going to work best.
Steven Newmark 05:35
That’s true. But of course, science alone can’t take all the credit. Those of us in the advocacy field and policy, needs to take some credit, I think. Social, financial and political factors play a big role. We had Operation Warp Speed, which the government drove through foundations and corporations to put money into vaccine development.
Zoe Rothblatt 05:52
Right. And this sense of urgency, you know, compelled scientists to collaborate as never before now we have two mRNA vaccines.
Steven Newmark 06:00
That’s right. And now the question is, what else can mRNA do? Researchers say that mRNA can be used to create a variety of vaccines and treatments in less time and at lower cost than traditional methods.
Zoe Rothblatt 06:10
And that right there is just especially important for our community who often rely on complex medications to manage their conditions. There are many options out there, but it’s not like the sky’s the limit when it comes to treatments for autoimmune diseases. And patients often go through trial and error to find the right medication, often eliminating many options along the way. So you know, having new technology and more options really does matter. It matters to me as a patient to hear about advancements happening because I know in the future as I get older, there will be new treatments to try.
Steven Newmark 06:43
Right. And this new technology is currently being studied in cancer therapies, cystic fibrosis, heart disease and rare genetic conditions. Vaccines using mRNA technology are also being studied and developed for the flu, malaria, tuberculosis, HIV and liver ailments.
Zoe Rothblatt 06:58
Wow, that’s so amazing. So mRNA can not only help with, you know, emerging infectious diseases, but also as therapeutic vaccines like for cancer and other chronic diseases. You know, the shift from prevention to treatment.
Steven Newmark 07:11
And just to give you a more specific sense of the advancements going on Moderna has more than two dozen prospective mRNA therapies and vaccines in their pipelines. Biotech, which worked with Pfizer to develop the other mRNA COVID vaccine, has a similar number of new mRNA studies and research projects in the works. And CureVac has launched studies into a half dozen other potential uses for mRNA.
Zoe Rothblatt 07:34
That’s incredible to hear. And if these mRNA therapeutics proved to be as successful as it was for the COVID vaccine, this good to really transform the drug landscape.
Steven Newmark 07:43
Yeah, absolutely. I’d hate to use the term there has been some good from this whole thing. But certainly the advancements in technology that we’ve seen may help us in the future not just with a future pandemic, but with current ailments that we’re dealing with.
Zoe Rothblatt 07:56
That’s true it’s good to find the silver linings in COVID sometimes, you know, digging through all the bad news there. This is definitely a silver lining for me to hear about, you know, new preventatives and new treatments.
Steven Newmark 08:06
Yeah, absolutely.
Zoe Rothblatt 08:08
Okay, Steven, this comes up on the close of our show. What did you learn today?
Steven Newmark 08:12
Well, I learned that someone I know, i.e. Zoe, has received her kit from the government. I’m still waiting for mine, but I’ll look for it. And I know not to look for it with any bells and whistles and no ribbons or anything fancy.
Zoe Rothblatt 08:25
Yep. But they work. So that’s all that matters. And I learned about all the advancements in mRNA technology and the different manufacturers that are doing tons of research, which is great.
Steven Newmark 08:37
Well, we hope you learned something too. We’d love to hear from you about mRNA technology or getting your government supplied tests or whatever else is on your mind. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 08:53
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 09:00
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 09:05
Well, everyone. Thank you for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt. I’m Steven Newmark. We’ll see you next time.
Narrator 09:29
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, E7: Disparities in Treatment for Migraine Patients
Disparities in migraine and headache care exist at every single level, from seeking care to diagnosis to treatment. In this episode, we talk with a leading advocate in the BIPOC community who has made it her life mission to sound the alarm to help reduce disparities in health outcomes.
“Migraine is the least funded research area relative to its very high disease burden. And I knew that this was something that I wanted to get involved in,” says Sarah Shaw, BIPOC Patient Advocate, Community Outreach Manager at the Global Healthy Living Foundation.
S3, E7: Disparities in Treatment for Migraine Patients
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Sarah Shaw 00:08
Somebody had dropped the words Headache on the Hill and I was like, “What the heck is a Headache on the Hill? What is this thing?”
Zoe Rothblatt 00:14
Sounds like a large headache.
Sarah Shaw 00:16
Migraine is the least funded research area relative to its very high disease burden. And I knew that this was something that I wanted to get involved in.
Steven Newmark 00:27
Welcome to The Health Advocates, a podcast that breaks down the major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:37
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:42
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from.
Zoe Rothblatt 00:56
Yes, we do. And you can check them all out at ghlf.org/listen.
Steven Newmark 01:02
Yes, they’re all part of the GHLF Podcast Network. Definitely check out Robert Popovian and Conner Mertens on Healthcare Matters. They bring their wisdom and expertise to wade through complex policy issues affecting patients.
Zoe Rothblatt 01:14
Excellent. Steven, let’s start as we always do with a listener comment. Are you ready?
Steven Newmark 01:18
I’m ready.
Zoe Rothblatt 01:19
So this came in after our Too Soon to be Over COVID episode and writergal54304 wrote, “Great and informative material I can relate to as a chronically ill patient.”
Steven Newmark 01:31
Excellent. I mean, that’s what we try to do. The whole world is going through a pandemic but it’s definitely different for those of us dealing with a chronic illness.
Zoe Rothblatt 01:38
Okay, so this week on The Health Advocates, we have a special guest here with us, Sarah Shaw, who is part of our advocacy team as our BIPOC Outreach Manager.
Steven Newmark 01:46
Sarah will be talking about her work with migraine patients.
Zoe Rothblatt 01:49
And we look forward to that conversation. But first, we have some COVID updates for our community. Steven, another week, and we are still living in a pandemic.
Steven Newmark 02:00
Yes, we are. The week start to blend after two years, I suppose.
Zoe Rothblatt 02:04
You know, there is some news out there. The FDA, the Food and Drug Administration, did not authorize the Pfizer vaccine for use in children under five years old.
Steven Newmark 02:12
Yes, I classified this under surprising but not shocking. The good news is that the two dose regimen was deemed safe for children. But the dosage was so low compared to the adult shots and the shots for older kids, that they just didn’t seem to do much of anything.
Zoe Rothblatt 02:27
So instead of starting all over, which, you know, would have created major delays here, Pfizer instead forged ahead with their studies in the hopes that a third dose would produce enough antibodies to be effective against COVID.
Steven Newmark 02:40
And then a couple of weeks ago, Pfizer indicated that the FDA had asked the company to submit documents now and request approval for the two dose series with the expectation of a third dose being added later. It was unclear what had happened to prompt this.
Zoe Rothblatt 02:55
And the FDA planned to evaluate the data February 15th, with the aim of starting doses the week of February 21st. But instead they posted a statement postponing the meeting. There were, you know, these additional findings as part of the submission and they’re waiting for the third dose information until discussing it.
Steven Newmark 03:13
So for the little little kids, we’re back to where we were several months ago, sort of. Effectively, the FDA may have found themselves contemplating improving a vaccine with somewhat limited efficacy against the threat which is limited in this age group.
Zoe Rothblatt 03:26
But of course, that is all speculation. You know, we don’t really know what happened. For parents of small, healthy, children, it’s important to remember that the risk of COVID to the vast majority of children is extremely low. It’s lower than many other risks like the flu or, you know, even driving.
Steven Newmark 03:41
Look, this sucks. Sorry to be so blunt, but it does. We want every human to have access to a vaccine. And this delay is particularly hard. But again, the risk for healthy young children is minimal. And hopefully this delay will feel like just a blip during the course of this pandemic.
Zoe Rothblatt 03:56
Yeah. And in other vaccine news, Steven, we have updates on boosters for immunocompromised.
Steven Newmark 04:01
Let’s hear it.
Zoe Rothblatt 04:02
So the CDC updated the recommendation to get the fourth shot of the mRNA vaccines, that’s Pfizer and Maderna, to three months after the third shot rather than five months.
Steven Newmark 04:13
Well, that’s good news for the folks we talked about that we’re getting turned away because it was too soon for the shot. This update should mean many of these folks are eligible now.
Zoe Rothblatt 04:20
Yep. And Steven, in our COVID-19 Patient Support Program poll, we had a bit over 2000 responses. And guess what.
Steven Newmark 04:29
What?
Zoe Rothblatt 04:29
96% reported that they got their fourth shot already.
Steven Newmark 04:33
Wow.
Zoe Rothblatt 04:33
And that’s just within a few weeks of becoming eligible.
Steven Newmark 04:37
Wow, that is great to hear that people are getting their protection. And for those who got the Johnson and Johnson vaccines, the CDC also updated guidance for an additional shot. We already had guidance that those who got J&J should get a second shot of an mRNA vaccine and now the CDC says they can get a third shot as a booster two months later.
Zoe Rothblatt 04:55
You know, hopefully this new guidance helps with some of the confusion. I know there’s been a bunch of questions about what to do if you got the J&J. I’ve been hearing it from folks in our communities. So I’m hoping that this new guidance put forth helps people feel like a little more comfortable and get the protection that they need.
Steven Newmark 05:12
Yeah, it’s definitely hard to wade through it all, and we do our best to simplify it. There’s also one more COVID update before we move on to an exciting guest segment. Last week, we mentioned how states are reevaluating mask mandates. We know that many in our community continue to feel left behind as COVID precautions are rolled back.
Zoe Rothblatt 05:28
Right, many who are immunocompromised rely on masks for an extra layer of protection, and we just had a conversation about the fourth shots, our community really needs to keep staying vigilant and, you know, using safety precautions. So the rollback of these mandates can feel really intimidating if you’re a member of our community who’s immunocompromised.
Steven Newmark 05:47
Right, as we’ve discussed, we’re likely going to see indoor spaces filled with people who choose not to wear a mask. This means that finding and wearing the right mask is extra important. We’ve talked about this on the show how the different 95 masks are very protective. And today we want to highlight the resources for getting free ones.
Zoe Rothblatt 06:04
Free protective masks, sign me up.
Steven Newmark 06:06
Let’s see how easy it is. Many pharmacies are participating in what’s called the Federal Retail Pharmacy Program, part of the government’s free N95 mask program. So they will be distributing free masks while supplies last and they are limited to three per person. And we will put the resources in our show notes. But be sure to call and double check with your pharmacy to see that they have masks in stock before heading down there, of course.
Zoe Rothblatt 06:29
Excellent. That’s really exciting. And you know if any of our listeners try this, definitely let us know how it goes.
Steven Newmark 06:38
Let’s move on because this week we have a very special guest here with us today. Sarah Shaw, who is part of our advocacy team as our BIPOC Outreach Manager. Hi Sarah. How are you today?
Sarah Shaw 06:48
Hey, Steven and Zoe, I’m doing good today. I have a little bit of a migraine.
Steven Newmark 06:52
Oh dear.
Sarah Shaw 06:52
So I’m sporting my migraine glasses, which helps, you know, looking at screens. So I’m grateful that I have that to help me navigate the workplace.
Steven Newmark 07:00
Oh, wow.
Zoe Rothblatt 07:00
Well, Sarah, welcome to The Health Advocates. We’re excited to have you on and advocating through your migraine. Thanks for all you do. We wanted to have you on for awhile and with Headache on the Hill happening this week, we thought it was just a great time to have you talk about advocacy and, you know, specifically the work you’re doing focused on disparities in migraine in the BIPOC community.
Sarah Shaw 07:20
Thank you. Thank you so much. I’m really happy to be here. I really look forward and listen to your show almost every week. I always learn something new. I always am waiting for Mac to make his interjections
Zoe Rothblatt 07:33
There’s three dogs here today. So the advocates are ready.
Sarah Shaw 07:38
It’s like a doggy daycare.
Steven Newmark 07:39
A little playdate.
Zoe Rothblatt 07:40
Exactly.
Sarah Shaw 07:41
But yes, this week, I participated in Headache on the Hill, which is an annual advocacy event in Washington DC, organised by the Alliance for Headache Disorders Advocacy, or AHDA for short. The AHDA unites health professionals, migraine and cluster headache patients, and advocates to present our requests, or what are known as asks, of Congress. These asks are typically focused around improving awareness about the impact of headache disorders, and also the need for research funding.
Steven Newmark 08:10
Sarah, how did you get started in advocacy yourself?
Sarah Shaw 08:13
I feel like accidentally, if I’m being honest. So in college, I was a part of many different student run groups. And one of the student groups that I was a part of, they mentioned that they were going to advocate on the Hill about financial aid. Throughout college, I was somebody who was a recipient of financial aid, I relied heavily on it, especially after my father, who was the supporter of our family passed away. And so for me, that was something that was near and dear to my heart. I wanted to make sure that myself and other students like me, were still able to receive financial aid funding. And it kind of took off from there. I kind of think like advocacy has always been in my blood to, you know, advocate for people that maybe are not the voices that are always heard. And for Headache on the Hill, I was looking for resources in the kind of the very beginning of my migraine journey, just trying to get more information. How can I help? How can I connect with more people? And somebody had dropped the words Headache on the Hill, and I was like, “What the heck is a Headache on the Hill? What is this thing?”
Zoe Rothblatt 09:13
Sounds like a large headache.
Sarah Shaw 09:16
I looked into it and I was like, oh my goodness, it’s an advocacy event. And that brings together, you know, a bunch of different advocates and healthcare professionals and they’re talking with their members of Congress. And I was nervous. I knew this was something that I wanted to get involved in.
Zoe Rothblatt 09:29
Walk us through what Headache on the Hill is like. How was it meeting with other patient advocates? Who do you talk to? How do things actually go?
Sarah Shaw 09:36
Great, great question. So this year, there were over 200 Headache on the Hill advocates advocating with us and you’re broken up into your state groups. So I was advocating with people from New Jersey. I had never met anybody living in my state that had like a chronic disease. When you’re connecting with patients online you never know what state they’re in. They’re not close to you. You never get to meet them in person. It’s all virtual, which is great. But when when Headache on the Hill was in person or even when we do it virtually, you actually get to speak with other patients that live in areas like you. They’re able to also suggest different pharmacies or doctors or specialists that are near you. So the day starts out with you can have anywhere from four to five to six meetings with your different members of Congress. And we present different asks. There’s usually one for the Senate and one for the representatives. We all come in with the same ask to keep the focus on what it is that we’re asking for.
Steven Newmark 10:33
What was the focus this year?
Sarah Shaw 10:34
So the focus was actually on disparities within the migraine community specifically for American Indian and Alaska Native or AIAN or indigenous communities in the US. We are asking our representatives for funding to establish what are called Indian Health Services, also known as IHS, Headache Disorders Centers of Excellences. It’s a mouthful but an important and crucial mouthful. Indigenous communities in the US have the highest prevalence of disabling headaches. If funded these Headache Disorders Centers of Excellences will include direct care, telehealth, consultation, education, training, and resources for indigenous communities, which is major. Especially given the fact that there are currently zero Indian Health Services, IHS, doctors that are certified in the specialty of headache medicine. The second ask was focused on disease burden, which is the impact of a health problem as mentioned by financial cost, mortality, morbidity or other indicators. It is often qualified in terms of a quality adjusted life years, also known as QALY’s, Q-A-L-Y’s, or disability adjusted life years, DALY’s, D-A-L-Y’s. Migraine is the least funded research area relative to its very high disease burden. In 2017, there was actually a 14 fold disparity for migraine where it received only 22 million versus the disease burden, which states it should have received $310 million. We were asking our members of Congress to request a Government Accountability Office, GAO, report on NIH research funding relative to disease burden, in particular for headache disorders. Not so fun fact, the GAO has not reviewed NIH funding priorities, including disease burden in more than five years. That was the theme of Headache on the Hill this year.
Zoe Rothblatt 12:20
Wow. Five years. I can only imagine like counting up the amount of migraines you’ve had in five years. It’s really really frustrating. Who did you bring with you? What was it like connecting with people that are similar to you?
Sarah Shaw 12:32
So I had recruited five BIPOC migraine patients. Mainly because I was really tired of going to healthcare and advocacy events and not seeing people that looked like me at these events. And I often think is that part of the reason why there are these huge disparities is when the people advocating for migraine or, you know, chronic illness don’t look like you, do the people that we’re asking think that it only affects one certain type of people. I think that there’s a different level of energy that comes along with advocacy when you see people that look like you. There’s this camaraderie, there’s this, they get it. Migraine is the second leading cause of global disability and leading cause of disability for adult women. And disparities in migraine and headache care exists at every single level, from seeking care to diagnosis to treatment. For indigenous communities specifically, such as Alaska Native and American Indian, is 40% more prevalent, and there is actually only one IHS neurologist for 125,000 in the Phoenix, Navajo IHS service areas, which is less than 20% of the overall US per capita neurologist areas. During Headache on the Hill, there was actually a Capitol Hill Policy Forum on Indigenous communities and one of the panelists mentioned that it took him four hours to get to care and treatment because they did not have care close by which I don’t have four hours out of my day back and forth to get somewhere and I’m just imagining the burden and why there are these disparities. We need to make sure that there is treatment areas and care close to them so that they don’t have to choose between work and taking care of people. Disparities in migraine and headache care exist at every single level from seeking care to diagnosis to treatment. I want to bring up that the prevalence of migraine and headache disorders is very similar across racial and ethnic groups. But there are vast differences when it comes to getting a diagnosis, access to treatment, and resources and even participating and being represented in clinical trials and research studies makes a huge difference. BIPOC and underrepresented groups are less likely to seek care from a healthcare provider. And this is also the case when it comes to migraine and headache. I know personally for me, it took me quite a few years to get a migraine diagnosis. And I think that was partially due to the fact that there was some discrimination from doctors that were treating me. They claim that, what I now know are migraine attacks, they claim it was anxiety or they claim that I was just overstressed from work. And that made me not want to go back to the doctor’s, when that is being told. And speaking with a bunch of other BIPOC people in the migraine community, they’ve been treated the same and sometimes much worse. Like I want to take a second to say that I have a lot of privilege. I am a light skinned black woman. And I know that there are other people in our communities, specifically within migraine, that have different disparities and barriers and access to care. I have insurance, I have access to great doctors now. But that’s not always the case within BIPOC communities.
Steven Newmark 15:32
Sarah, are you starting to see improvements in this area? Because these are issues certainly that we at GHLF and others around the country have been rattling about for for many years, but in particularly, I would say the last five years have been very, very loud about the disparities in health outcomes and differential diagnoses that you’re describing. Are you starting to see any improvement?
Sarah Shaw 15:55
I definitely think that there is an improvement from the last 10 plus so years. I’m seeing more representation in media. Specifically, I’m seeing more diverse people represented in commercials and organizations are finally starting to wake up and realize that migraine does not discriminate. It’s not a middle aged white women’s disease. But it took, it took a lot of time and a lot of work for the communities to get there. There’s a lot more work to be done. I was speaking with Qasim, who is one of the BIPOC patients that we brought on for Headache on the Hill. And he said he’s like, “I’m still the only black man with migraine in a lot of these communities.” He’s like, I know that’s not the case. And that’s why he created something called Black Men Have Migraine Too, because he wants to help break like this stigma. And I think the more organizations and companies realize that these disparities exist, and the more time and effort that we put into making sure that there is access to care, access to medications, there are still so many issues with a lot of BIPOC and underserved communities getting access to these treatments. I’m hopeful though I am because I’ve seen the change. But I’m always like we have to do more.
Zoe Rothblatt 17:01
For those who want to hear more about Sarah’s story, listen to Talking Head Pain, hosted by Joe Coe. Sarah shared her story in three episodes, one just about her story, and then a two part special with her doctor, Dr. Courtney White. So definitely check it out. And, you know, we hope to see you joining us in the 50 State Network and advocating with us in 2022.
Sarah Shaw 17:25
Thank you. Thank you for having me.
Steven Newmark 17:27
Well, Sarah, thank you so much for joining us. And for our listeners, if you’re interested in getting involved in advocacy, please do join us at the 50 State Network, which you can find at 50statenetwork.org. That’s 50statenetwork.org.
Zoe Rothblatt 17:41
Well, this brings us to the close of our show. Steven, what did you learn today?
Steven Newmark 17:44
Well, I learned from Sarah about the underfunding for migraine patients in particularly in rural and indigenous populations around the country and how it’s something that we need to do a better job of advocating for.
Zoe Rothblatt 17:56
Me too. And also just highlight one more thing from Sarah, Sarah talked about, you know, it’s really nice to meet other advocates and patients that live in the same area as you because you can, you know, share so much more because you’re in proximity to each other. And I’d never thought about that. So it’s a really good perspective just to connect with people around you.
Steven Newmark 18:15
We hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 18:25
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 18:32
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 18:37
Well everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts. And hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 18:54
I’m Steven Newmark. We’ll see you next time.
Narrator 19:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, E6: Living With the COVID Endemic
For many, life feels flat from dealing with COVID for nearly two years. In this episode, we examine the growing momentum of states across the United States starting to deal with COVID as an endemic and not a pandemic.
“We didn’t and we won’t eradicate COVID as was a hope once upon a time, but we have to be prepared to live with the endemic phase,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S3, E6: Living With the COVID Endemic
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:09
We didn’t and we won’t eradicate COVID as was a hope once upon a time, but we have to be prepared to live with the endemic phase. Welcome to The Health Advocates, a podcast that breaks down the major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:28
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:32
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from.
Zoe Rothblatt 00:47
Yes, and you can check them all out at ghlf.org/listen.
Steven Newmark 00:52
Be sure to listen to our special two part episode of The Health Advocates filled with tips on how to make sure your insurance carrier pays what is required.
Zoe Rothblatt 00:59
Excellent. So we’ve been getting great feedback on these episodes, but I thought we’d start today’s listener comment from a doctor. Are you ready, Steven?
Steven Newmark 01:07
I am ready.
Zoe Rothblatt 01:08
So Dr. Robert, shout out, wrote, “I listened to the podcast on the shenanigans that payers exercise at patients expense, literally. So professional and polished, not to mention that outstanding content. Seriously well done.”
Steven Newmark 01:23
If a doctor is heaping praise perhaps we ought to stop now. Seriously, though, it’s terrible that doctors had to spend so much time and energy helping patients navigate the insurance system in our country. Give a listen to our two part episode for some good tips and ways to help advocate for laws to make the navigating simpler for patients.
Zoe Rothblatt 01:40
So Steven, a few weeks ago, you mentioned that you’re excited for the Olympics. Have you been watching? How are they going?
Steven Newmark 01:46
I tuned in for the opening ceremonies. But honestly, I couldn’t muster much enthusiasm. I can’t pinpoint why perhaps it’s the second pandemic Olympics in less than a year. It seems like there’s just so little interest in the United States for the Olympics this year. In fact, it seems like there isn’t much interest in anything these days. It just feels like there’s this collective sense of depression we’re all going through. I was looking at some economic numbers the other day, and there’s a ton of good news, lots of jobs, meaning more opportunities for workers, but everything just feels flat.
Zoe Rothblatt 02:14
I agree each week feels as though you know, we’re just dragging on even more. So long as the viruses can mutate there’ll be variants and it’s becoming hard to just keep prioritizing our mental health in all this. Is there something positive to talk about?
Steven Newmark 02:28
Okay. Okay. Here’s some sort of positive news. The CDC just announced that wearing N95 and the K class 95 masks provide significant protections. I thought this was already well known. But it seems that the CDC has been a bit behind on things of late.
Zoe Rothblatt 02:44
Yeah, I agree. I do feel that sense of the CDC being behind I think now they’re pointing to new and more definitive studies that estimate that these high quality masks reduce your chance of testing positive by 83% in indoor settings and surgical mask performed fairly well too, cutting your chance of infection by 66%, the CDC said. So you know, the odds for cloth masks were much lower than that, which is what we’ve been hearing.
Steven Newmark 03:11
And I take this as good news, though, some folks won’t want to hear this, every day, we are inching closer to the moment when the idea of masks being optional is going to be the norm throughout the country.
Zoe Rothblatt 03:22
Yeah, I’m feeling that in our safe bubble of New York City, I’m definitely still seeing masks. But since Omicron has really passed it, it’s become a lot less intense in New York City, I’m seeing less of these N and K 95 masks and more going back to surgical and cloth masks.
Steven Newmark 03:38
Definitely I’m also seeing a lot more of the I’m going to take the mask and pull it down under my nose thing going on these days.
Zoe Rothblatt 03:44
Yeah.
Steven Newmark 03:45
But I’m also less scared for whatever it’s worth. The good news here is that we can work to protect ourselves by wearing the proper masks.
Zoe Rothblatt 03:51
And with proper fitting.
Steven Newmark 03:53
Yes, yes. With proper fitting for sure.
Zoe Rothblatt 03:55
Yeah, I usually, if a mask is too big, you know, sort of take the the loops and twist them a bit to make it tighter, and I definitely feel more protected. But I agree that keeping the mask mandates is going to get harder and harder. And you know, there may be another wave around the corner. You know, despite all our efforts, there’s only so much we can do to create a society that’s safe for autoimmune patients in the face of a virus.
Steven Newmark 04:19
That’s true. I mean, there’s a cultural aspect here, of course. In parts of Asia masks were popularized well before COVID. So it’s easier to keep masking up longer there. But here in the United States where everything tends to get political, I just don’t know how much longer the mask rules and the basic etiquette that goes along with that will stick around.
Zoe Rothblatt 04:37
I saw that recently, several states are announcing to roll back mask mandates for schools and indoor public spaces because of this drop in cases. And I think I saw that this is one of the biggest rollbacks of statewide health protocols since the pandemic began.
Steven Newmark 04:52
New Jersey made this announcement and shortly thereafter, California, Connecticut, Delaware, Oregon and New York said they would also end some of the mask mandates
Zoe Rothblatt 05:01
And while it seems like we could be trending in the right direction with cases dropping, it also really scares me because every time we get an uptick in cases, we sort of go back to our old reliable protection, which is the mask. So I wonder if you and I will be having the same conversation in a few months from now.
Steven Newmark 05:16
Look, the state of rollback of mask mandates seems to be at odds with federal guidance from the CDC, like we mentioned before, where the CDC is citing studies showing that protection is robust from N95s.
Zoe Rothblatt 05:27
It certainly scares me because hospitalizations are still at higher rates than it was in 2021. So I feel like we can’t just look at cases we also have to look at this bigger picture and if hospitalizations are high, I feel like we really need to do our part with the masks. And I think it’s better to be prepared for the next phase than to be surprised by it. And you know, what we always say our best advice for listeners is this. Get your N95s and K level masks, continue to do what you can, and hopefully with spring coming, it should be easier for outdoor rather than indoor gatherings. But essentially, you know, our key advice is just to be ready and keep advocating.
Steven Newmark 06:04
And I think it starts with being mentally ready. We didn’t and we won’t eradicate COVID as was a hope once upon a time, but we have to be prepared to live with the endemic phase.
Zoe Rothblatt 06:14
And in more good news, newer treatments are both becoming available and will more easily be accessible, including new potential for some over the counter treatments. And getting mentally prepared, it may be helpful to talk with your healthcare providers about what you can do to stay safe. And you know what your plan is if you or someone in your house contracts COVID.
Steven Newmark 06:35
You know, and just to leave this topic on a little bit of a positive note, a quote some doctors that I found online, talk to Rhanu Dhillon, an epidemic response specialist at Harvard Medical School said about the N95 masks, they can provide you with as optimal protection as possible, irrespective of what those around you are doing. He also said that wearing an N95 allows folks to quote live as normally as possible, but still stay safe. And he also continued on by saying there are an array of N95 masks that you can find that are actually more comfortable than the surgical or cloth masks. Again, we’re moving towards the endemic phase where we’re sort of on our own, we’re gonna have to protect ourselves. And for us, that means wearing N95s or KN95 as your comfort level allows. And in terms of future mask mandates, I would also add should another surge come our way, hopefully it will be easier to reinstate mandates as needed, depending on the baseline numbers.
Zoe Rothblatt 07:29
I agree. I know we’re like a little, I guess biased because we’re in New York, and people are very much in favor of the mask differently than other parts of the country. But it was true that when Omicron hit people did put the mask back on very quickly. So I hope like you’re saying that if there is another way if people know what they need to do. We’ve been in this long enough that we have the data to support masks do work, and they are helpful. So it’s good to hear from doctors and scientists that keep studying as we go along.
Steven Newmark 07:57
Absolutely.
Zoe Rothblatt 08:00
So before we close, I wanted to ask you and our listeners if anyone’s got their at home rapid test from the federal government. If you remember a few weeks ago, a website opened up where we were all able to order, I think four test kits, I don’t know, correct me if I’m wrong.
Steven Newmark 08:15
Correct.
Zoe Rothblatt 08:15
I ordered mine. Still no sign of them. My friend did get hers in the mail, which gave me hope that they’re on their way soon.
Steven Newmark 08:21
Yes, they’re on their way. That’s all I could say. I don’t know, my informal polling of friends and family. A few folks I know got them yesterday. So that gives me hope that they are in the mail.
Zoe Rothblatt 08:31
Okay, Steven, up on the best part of the show. What did you learn about today?
Steven Newmark 08:35
Well, I learned from you that the N95 masks can protect you roughly 83% against the norm from COVID in indoor settings, and that’s pretty darn good. It makes me feel a little bit safer.
Zoe Rothblatt 08:45
And I learned from our discussion about these mask mandates rolling back and how the states are working or not working with the federal government. So we’ll see what happens.
Steven Newmark 08:56
And we hope you learned something too. We’d love to hear from you. Whether you received your tests in the mail from the federal government or anything else that’s on your mind. Send your email to [email protected] or better yet, include a short video or audio clip.
Zoe Rothblatt 09:10
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 09:16
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 09:21
Well, everyone. Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll have more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 09:39
I’m Steven Newmark. We’ll see you next time.
Narrator 09:44
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, E5: Too Soon to Be #OverCOVID
COVID fatigue has resulted in many people questioning everything from booster to masks — but this fatigue is dangerous to our immunocompromised community. They don’t have the luxury of declaring that COVID is over.
“Coping with the uncertainty of yet another variant is taking a toll on our mental health,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation. “COVID is not over and we’ll keep advocating and keep our listeners updated as more information comes out.”
S3, E5: Too Soon to Be #OverCOVID
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:09
Coping with the uncertainty of yet another variant is taking a toll on our mental health.
Zoe Rothblatt 00:13
And I just want our listeners to know, you’re not alone. You have a community here with us.
Steven Newmark 00:18
Absolutely. COVID is not over and we’ll keep advocating and keep our listeners updated as more information comes out. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:37
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:41
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from.
Zoe Rothblatt 00:55
Yeah, we sure do. For those interested in a deeper dive on policy topics definitely listen to our colleagues, Robert Popovian and Conner Mertens, on their podcast called Healthcare Matters.
Steven Newmark 01:05
And be sure to listen to our special two part episode of The Health Advocates on utilization management that just dropped.
Zoe Rothblatt 01:10
Basically, it’s just the use of managed care techniques that allows, particularly, health insurance companies to manage the cost of healthcare benefits. And that’s often done without your doctor, without you. Definitely take a listen to those special episodes. They’re all part of the GHLF Podcast Network. And you can check them all out at ghlf.org/listen. Steven, are you ready to hear a listener comment?
Steven Newmark 01:35
I am ready.
Zoe Rothblatt 01:36
Okay, this one’s a shout out to Carol, who emailed us over the weekend saying, “Really get a lot of comfort from your podcast. The two of you make a great team. Thank you. And hearing Mac always makes me chuckle.”
Steven Newmark 01:47
Yeah, he always makes me chuckle too. And really great to hear from you, Carol. And I like the fact that you use the word comfort. That’s what we aim for here. So a little chuckle and a little comfort.
Zoe Rothblatt 01:56
Yep. Thank you, Carol. And I think I see Mac wagging his tail in the background. He’s officially our mascot of The Health Advocates. We invite all our listeners to go to Apple Podcasts, leave an honest five star rating, and positive review.
Steven Newmark 02:09
Zoe, I wanted to talk about a trending hashtag that I noticed this week for folks who were done with COVID, whatever that means.
Zoe Rothblatt 02:16
Yeah, I think I’ve seen this #DoneWithCOVID and #OverCOVID. But for real, what does that even mean?
Steven Newmark 02:23
I don’t even know. I mean, I’m done with COVID. But I’m not so sure COVID is done with us, right?
Zoe Rothblatt 02:29
I know. It’s so true. It sounds like a lot of people are just really frustrated and no longer want to take any precautions, which just makes me frustrated because that is simply selfish.
Steven Newmark 02:39
Yes, seeing this trend made me smile. But it also made me angry. I mean, we all want to go about our lives as we did in 2019. But doing so puts millions of our neighbors at risk.
Zoe Rothblatt 02:48
Right. I mean, I hear a lot people don’t get sick if they’re vaccinated. Why do we keep having to wear masks? I’m tired of these scientists, I’m tired of these rules, just goes on and on.
Steven Newmark 02:58
I hear the same and I get it. And as I said, after letting out a smile, I become quite angry. First off if you’re vaccinated, if you’re an adult, and you’re not immunocompromised, what exactly are you precluded from doing? Restaurants are open all over the country. Movies, shows, sporting events are open. Flights are operating. What are folks complaining about? Is it all just about the masks?
Zoe Rothblatt 03:20
I feel like we’re having this conversation over and over again, as we need to as health advocates. You know, we need to raise the voice of our community and say COVID is not over. Omicron may be milder, but it’s not mild. And people with chronic disease just don’t have the luxury of saying, “Okay, I’m over it.” I wish that I could say, “Oh, I’m over it with the arthritis. I’m over it with the Crohn’s.” But you know, it just doesn’t work like that. You can’t just decide that you’re over it.
Steven Newmark 03:44
Right, It’s a freakin’ virus. You can’t just say, “You know, I’m done with you virus. I’m sorry, I don’t really feel like it anymore.” I still don’t quite grasp, if you’re an adult, healthy adult, without comorbidities, you don’t have children, what are you precluded from doing? Is it simply the fact that you have to show a card when you enter a restaurant in certain parts of the country? Is it simply the fact that you still have to wear a mask? I’m not quite grasping it. I do wonder if there’s some kind of a psychological reason behind this. I mean, there seems to be a coarseness to some of these commenters. You know, I’m not referring to the anti-mask crowd. You know, they were anti-mask from the beginning. But rather than the folks who had been masking and are just at the point where they’re ready to take off their masks. The folks who were diligent for so long for whom fatigue is really set in.
Zoe Rothblatt 04:27
I really think they just don’t think about our community much and how fragile our health is.
Steven Newmark 04:32
I agree. These are the kind of folks who talk about how the vaccines have worked, how Omicron doesn’t make us sick, but they seem to conveniently ignore the immunocompromised community or they just don’t seem to care.
Zoe Rothblatt 04:42
And I suppose that’s why our community needs such strong advocates because we’re continuing to be ignored, but especially now I think we’re really feeling ignored.
Steven Newmark 04:50
We simply ask folks to wear a mask because it helps spare the folks around you. Don’t mask shame those of us who want to protect ourselves.
Zoe Rothblatt 04:56
Yes!
Steven Newmark 04:57
Seriously, how is your life affected by me wearing an N95 mask? Do these folks complain about ramps being installed in buildings to accommodate Americans with disabilities?
Zoe Rothblatt 05:05
It’s so ridiculous. It’s so absurd. It’s just completely unfair. And you know, to me, the mask is really like another accessory. It’s putting on sunglasses when it’s sunny out, snow boots for the snow. It’s a cloth over your face. It’s like very simple, but effective form of protection. It’s not this crazy invasive thing that people are making it out to be.
Steven Newmark 05:24
Yeah, I know. Alright, I’m done ranting. I’m done. Let’s move on. Let’s move on.
Zoe Rothblatt 05:29
Maybe we should say we’re done ranting for now, you may catch us ranting later.
Steven Newmark 05:33
You know, I’m gonna start a new hashtag. I’m over those who are over COVID.
Zoe Rothblatt 05:37
Okay, let’s get it trending. I think we’ll get the advocates behind us. Okay, so I have updates for our listeners, I got my fourth shot. But before we talk about that, I want to mention that a few weeks ago, I mentioned that I ordered masks from Project N95. And they arrived, they’re looking good. You know, they’re legit. I double check the stamping on them. And I’m really excited.
Steven Newmark 05:58
Oh wow, great work, Zoe. I remember last time we were speaking about this topic, you had some fake ones.
Zoe Rothblatt 06:02
Yes. Yes. After my investigation, I discovered that I had in fact bought some fake KN95.
Steven Newmark 06:08
Oh, wow.
Zoe Rothblatt 06:09
Project N95 did me right. I ordered them about two weeks ago.
Steven Newmark 06:14
What’d you get?
Zoe Rothblatt 06:14
So, I got the N95. They’re a nice blue color.
Steven Newmark 06:18
Nice, I got those. The Aqua ones?
Zoe Rothblatt 06:20
Yes, and they go behind your head, which is actually very comforting for the ears. And if you’re a glasses wearer, it turns out to work a lot better. So that’s really exciting. So I just want to let our listeners know that is in fact a good resource. And if you order you can probably expect it to come in around two weeks.
Steven Newmark 06:37
Good work. Zoe. Wait, you mentioned the fourth shot. That’s even bigger news. How did it go?
Zoe Rothblatt 06:41
It went well. So I have a few thoughts to share here. First, is that I didn’t get turned away. Last episode, we mentioned how we were hearing about immunocompromised people getting turned away even from multiple locations when they tried to get the fourth shot. So I did some investigating in my appointment. And I asked the pharmacist about this.
Steven Newmark 06:59
Investigating, that sounds more like advocating.
Zoe Rothblatt 07:01
Yep. Well, we are The Health Advocates.
Steven Newmark 07:03
Right.
Zoe Rothblatt 07:04
I asked her she’s seen many people come in for this fourth shot. She’s had a few but not really. And then, you know, I asked her, “Have you been hearing about people getting turned away? Why is this happening.” And she mentioned something interesting, which I hadn’t really thought of myself. She said that she had to turn a few people away because it was just too soon. And the fourth shot is given five months after the third. So she turned people away, but told them this is the day of your third shot. So come back at this right date, that’s five months ahead of that time.
Steven Newmark 07:33
Ah, that makes sense. And certainly makes me feel a bit better that maybe not everyone is simply getting turned away from this protection, but just needs to wait a little bit longer.
Zoe Rothblatt 07:42
Exactly. I felt that same relief. And I just knew we had to talk about it and get the word out. So for our listeners, just double check your vaccine card and count five months ahead and that’s when you know you’re ready to get the shot.
Steven Newmark 07:54
And of course talk to your doctor.
Zoe Rothblatt 07:56
Oh, absolutely. This fourth shot was a decision that my rheumatologist and I made together and then my other update is that I’ve got the Moderna vaccine, so the fourth shot was a half dose. I double check with the pharmacists just to say, “Okay, I’m making sure this is the dose for immunocompromised.” And she said, “Yes, you did the right thing. Third shot for immunocompromised is a full dose and Moderna for the fourth is a half.” So I just thought that was interesting to share.
Steven Newmark 08:21
Wow. It’s incredible when you have certain conditions, how you just have to be hyper aware of everything.
Zoe Rothblatt 08:28
Yeah.
Steven Newmark 08:29
You have to know your condition. You have to know the medications. You really want to be on top of the pharmacists who of course, in the majority of cases will be doing the right thing. Speaking of vaccines, it was a big week for the COVID vaccines here in the United States. Moderna got full approval for its shots and Novavax applied for Emergency Use Authorization and it looks like Pfizer is applying for Emergency Use Authorization for children under 5.
Zoe Rothblatt 08:50
So starting with Moderna, the FDA approval makes it the second COVID shot fully approved in the US, along with the Pfizer vaccine. And in my mind approval provides this extra emphasis of the vaccine’s importance, which matters so much for our community with underlying conditions to show the public, “Hey, these things work and they’re approved. So get your shots and keep us all safe.”
Steven Newmark 09:12
The FDA has very high standards for safety, effectiveness, and quality. So this approval can hopefully give some people additional confidence in the vaccine and having full approval allows local jurisdictions to mandate them.
Zoe Rothblatt 09:24
That’s a really good point. So you know, like you mentioned also, Novavax has applied for Emergency Use Authorization from the FDA. So Steven, I want to take a pause here and talk about why we have so many vaccines, you know, we already have three here in the US. Seems like those are getting them are getting them and like we talked about for the defiant are not. So, will another vaccine make a difference? Why throw another one into the mix?
Steven Newmark 09:47
Well, that’s a good question. And there are a few things to talk about here. One is that Novavax has different storage requirements than the mRNA vaccines. So Novavax is not mRNA, that’s the new technology we’ve spoken about that in past episodes. Unlike the mRNA vaccine, which require hyper refrigeration, if you will, this vaccine can be stored at normal refrigeration temperatures, which means that for distribution, it’s easier to get those hard to reach areas with less intense storage requirements. Also, I do have a fair amount of anecdotal evidence from folks in my circle who have said they are fearful of the mRNA vaccine for whatever reason, and are looking forward to Novavax
Zoe Rothblatt 10:25
And you know, what you said about getting to hard to reach areas, getting the vaccine out to as many people really matters for our community. And we want as many people to get vaccinated to get that community protection. So people feel more comfortable with this technology, that’s great to have these options. And for those in our community who live in hard to reach areas, it’s important to have this access.
Steven Newmark 10:45
And it’s good to have a range of vaccines as we see them work in the real world. As we saw with the J&J, Johnson and Johnson vaccine, it is generally considered less effective in preventing COVID, unfortunately, so it’s good to see how the vaccines play out in the real world and what’s best for different types of people.
Zoe Rothblatt 11:00
Right, so we’ll see how this plays out with Novavax, keep our listeners updated. Also, about the Pfizer vaccine. You know, Steven, you, as a parent, do you have thoughts about this development?
Steven Newmark 11:03
Yeah, I guess a few competing thoughts. The first is I’m definitely disappointed, as of our airing today, for the children 5 to 11. It’s been somewhat stagnant 20%, for quite some time. I take to mean that the folks who are going to vaccinate their children, it’s kind of stuck there. And that’s quite frustrating to say the least. Hopefully, that will start to budge. I am hoping that there’ll be some more sticks to dangle out not just the carrots, but the sticks. I know that my children participate in a fair amount of programs that require vaccination for everyone 5 and older. So the more of those that exist, the more folks they think will get vaccinated. And then for the little, little ones, very, very exciting, because look, they were the last folks standing, if you will, to be out there without any protection, and particularly the youngest who couldn’t even put on a mask, the infants. So this is great news.
Zoe Rothblatt 11:47
You know, when we think about who’s vulnerable, like young people are in that vulnerable category, so it’s really important to get that protection.
Steven Newmark 11:54
Absolutely.
Zoe Rothblatt 11:55
Okay, Steven, all that’s good news. But with good news, there sometimes comes bad news, which is that we have a new variant, or rather a sub variant of Omicron known as BA.2. You know, this comes in as we’re still grappling with Omicron, and I gotta say, it’s hard on my mental health. I’ve heard the same for many in our community. We’re just really dragging with this.
Steven Newmark 12:15
Yeah, no, no, no, it’s very easy. All you have to do is say, #I’mOverIt, and all your worries melt away. It’s the easiest thing.
Zoe Rothblatt 12:23
I’m gonna start doing that from now on, for sure. We’ll see what happens. Nothing.
Steven Newmark 12:28
Ignorance is bliss. That’s the way to go. But in all seriousness, it’s hard. If you’re like me, I find myself grasping for any positive news. And I kind of cling tight to that. Coping with the uncertainty of yet another variant is taking a toll on our mental health, all of us.
Zoe Rothblatt 12:43
It really is. And I just want our listeners to know you’re not alone. You have a community here with us. We’re going to be talking about this so long as it matters and that we’re all feeling this.
Steven Newmark 12:52
Absolutely. And like we talked about at the top of the episode, COVID is not over, and will keep advocating and keep our listeners updated as more information comes out about the impact of this variant on our community and what we can do.
Zoe Rothblatt 13:04
Okay, Steven, up to the best part of the show. What did you learn today?
Steven Newmark 13:08
Well, I learned you got your fourth vaccine, fourth shot, and that it was a nice and simple process, which was reassuring to hear.
Zoe Rothblatt 13:14
Yeah, really exciting. And I learned about the importance of having multiple vaccines available to us, and you know, seeing how they work in the real world and getting them to different areas of the country.
Steven Newmark 13:26
Well, we hope you learned something too. We’d love to hear from you about how you’re coping, mentally, of course, or anything else that’s on your mind. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 13:39
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 13:46
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 13:51
Well, everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts, and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 14:09
I’m Steven Newmark. We’ll see you next time.
Narrator 14:14
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
EXTRA – Part 2: Not Paying it Forward: Insurance Practices
It’s tough enough to live with and manage a chronic illness without insurance companies making it even harder. From utilization management tactics like step therapy to copay accumulator adjusters where insurers charge a patient twice, there are many systems in place that save insurance companies money and increase costs for patients.
“Imagine going to a drive-thru and say you know what, I want to be a Good Samaritan, I want to pay for the person’s meal behind me,” says Corey Greenblatt, Manager of Policy and Advocacy at the Global Healthy Living Foundation. “Person behind them drives up and the person at the window says, ‘Hey, even though the person in front of you just paid for your meal, you didn’t pay for it, so I’m going to charge you again.’ The drive-thru collects the money twice, and the person now has to pay for themselves, even though that was already paid for.”
Extra - Part2: Not Paying It Forward: Insurance Practices
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Corey Greenblatt 00:09
Imagine going to a drive thru and says you know what, I want to be a Good Samaritan, I want to pay for the person’s meal behind me. Person behind them drives up and the person at the window says, “Hey, even though the person in front of you just paid for your meal, you didn’t pay for it, so I’m going to charge you again.” The drive thru collects the money twice, and the patient now has to pay for themselves, even though that was already paid for.
Steven Newmark 00:33
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:44
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:49
Our goal is to help you understand what’s happening in the healthcare world. To help you make informed decisions to live your best life.
Zoe Rothblatt 00:55
So Steven, we’re conducting Part Two of our two part episode about Migraine Utilization Management, what it is, and how it harms patients.
Steven Newmark 01:04
We’ve heard from our friend and colleague Joe Coe about his experience with utilization management and battling to get his migraine medication.
Zoe Rothblatt 01:11
And today we’ll hear from a policy expert, Corey Greenblatt, on how utilization management harms patients and what you can do as an advocate to help patients like you. So as a reminder for ourselves and our listeners, utilization management is when your health plan, your health insurance, assesses and reviews the medication or test before approving it, and often, you know, give you an alternative that wasn’t the medication or test prescribed by your doctor. And their goal in doing this is to manage costs. While it does sound like a good thing to manage costs, it often leaves patients fighting to get their medication, results in delays in taking medication, which can lead to worsening health condition.
Steven Newmark 01:50
We are patient advocates, our show is called The Health Advocates. So today we’re going to talk about what you can do about these issues.
Zoe Rothblatt 01:57
And much of what you can do involves policy. So we brought along our friend, Corey for that. Hey, Corey, how are you?
Corey Greenblatt 02:03
I’m doing well, thanks. How are you both doing?
Zoe Rothblatt 02:05
We’re great.
Steven Newmark 02:06
Excellent.
Zoe Rothblatt 02:07
Corey is our Manager of Policy and Advocacy at GHLF. And we’re going to hear about what states are doing to protect patients from these insurance practices.
Steven Newmark 02:16
When it comes to utilization management, what has been the trend over the last several years in terms of helping or harming patients? Have you seen a dearth of utilization management policies from private insurers? And then when did they start to come about? And relatedly, have there been laws that have been enacted to help patients?
Corey Greenblatt 02:34
Great question, and there’s really some good news, bad news with all of this as there is a lot of these questions we’re going to go into. The bad news, as it relates to patients, is that insurance companies are always looking for new ways to create new types of utilization management as ways to save them money and pass the cost on to patients a bit more. These practices previously were limited to things like prior authorization, but in the last 20 to 30 years, we’ve seen step therapy become much more prevalent. We’ve seen instances of non-medical switching become much more prevalent and things that are specifically targeted to things like copay assistance where we have copay accumulator adjusters, copay maximizers, all these things that sound really complicated. I know everything I said was just English, but putting those words together like that.
Steven Newmark 03:17
Yes, please translate that.
Corey Greenblatt 03:18
The good news to come out of this is that where all of these practices are becoming much more prevalent, so are the laws that are coming up at both the state and the federal level to start to deal with them. Prior authorization reform laws have really been around since the 1990s, if not longer, and then step therapy laws really started popping up around 2011. But like all things, technology has seen a major improvement in the last 20 to 30 years. So the processes that deal with these things like step therapy and prior authorization need to also get updated with the technology that has allowed these things to become much more seamless. Unfortunately, because a lot of these laws were passed at a time when fax was the de facto way to send information and hard copies were necessary to approve things, insurers oftentimes fall back on this kind of excuse that they don’t need to accept digital copies or they don’t need to respond in a certain time, because the law says they don’t need to. And our goal with many of these states is to try and update the laws to add new regulations that strengthen the laws that protect patients, as well as increased the timeline so that they must respond a lot faster.
Zoe Rothblatt 04:30
So you mentioned these laws, can you talk about how they directly benefit patients? What’s sort of in them that that helps patients avoid utilization management?
Corey Greenblatt 04:39
Without getting into too much specifics of it all, these laws essentially include language that requires insurers to respond to exemption requests in a given time, requires them to accept these requests for given reasons, and essentially what that all means, patients should be able to directly access the medications that they’re doctors believed it was the best choice for them, easier than they currently are able to. And so these reform laws, the main goal of them, is to prevent unnecessary delays and to prevent patients from needing to try medications that were not originally prescribed to them.
Steven Newmark 05:15
You and I are also working at the federal level on a bill known as the Safe Step Act. Why is a federal bill necessary if a handful of states are passing nearly identical laws at the state level every year?
Corey Greenblatt 05:27
The short answer is that our healthcare system is complicated and different parts of the healthcare system are governed by different parts of our government. Think of it almost like the Army and the National Guard. Both of them are considered armed forces, but one of them is under a National Charter, and one of them is under a State Charter. And so it’s similar in regards to healthcare. The much longer answer revolves around the law that created the employer based healthcare system that many Americans get their health insurance from. Many, if not most Americans, received their health insurance through an employer. And this system was created through a law called the Employee Retirement Income Security Act, or ERISA as its own for short. ERISA is a very large law, it’s like that many pages, it’s a lot.
Steven Newmark 06:13
Very thick.
Zoe Rothblatt 06:14
Okay, for our listeners, Corey just hel d up his hands to passed the size of his head, so you can imagine.
Corey Greenblatt 06:22
The rules that govern kind of employer based healthcare coverage comes from the ERISA law. And it’s because it’s so thick, and because it governs so many different things, lawmakers are very hesitant to do anything that reforms that law, because it could have a lot of consequences by opening it up and we don’t really need to get into it that much. However, one of the things that the federal Safe Step Act is trying to do is actually open this law up and reform it to just add protections that would make it so that patients would have just more protections against step therapy. And they’re essentially trying to insert the language that has already been passed in many different states, I think that we’re almost at the 30 states right now that have passed this kind of model language. So if that passes, it’d be great for a lot of Americans to get employer based care. But that’s not all of it. While that’ll have a big impact, it doesn’t protect everyone. And that’s where state laws come into play. State laws oftentimes protect patients who are not covered by ERISA. So who would that mean? That would mean people who are employed by state governments, people who get their insurance through the individual marketplace as a maybe a self employed individual who buys their insurance through the state, or people sometimes on Medicaid, some of these laws do cover Medicaid as well. So those are the people who state laws are referring to. And in order for us to make sure that everyone is protected from things like step therapy, we need to make sure that laws are passed, identical laws are passed, both at the state level and the federal level.
Zoe Rothblatt 07:57
So you mentioned all these different types of groups of patients who could be covered by state step therapy, you know, and individual plan Medicaid, how can a patient know if they’re part of that group? How can they check if their state has step therapy protections? And if it doesn’t, you mentioned we’re at 30 states, it’s still another 20 that may not have protections, what can we do to change that?
Corey Greenblatt 08:17
There’s a couple of really great resources here. And the first thing you should probably do is just go to Google, type in your state, and step therapy law. State plus step therapy law. Because the first couple results, you’ll normally get the law itself, if it’s been passed, you’ll get a couple articles. And if nothing has been passed, you won’t see anything there. And so that’s a great indication on if there is a law or if there has been an effort to try and pass a law there. There’s a certain amount of Twitter accounts that you can follow. Creaky Joints, or own Twitter account is a great one to follow. The Federal Step Therapy Coalition has a Twitter account. Other patient groups like ours are a great way to see when things are passed, where we’re focusing on, and how things are going throughout the year. And then another great tool is checking with your drug manufacturers support team. A lot of these places where you get your treatment have teams that are designed in a way to help you address some of these utilization management practices with your insurance. And they know all of the details about your state, about how they address them, and can even usually give you tips on how to get around these protocols. And then finally, if your state doesn’t have step therapy law, one of the best things you can do is let us at GHLF know, and let us know that you want to work to change this. Through our 50 State Network, we can work with you to raise your voice, we can connect you to different media outlets, we can connect you to other patients down there, and we can find a way to work together to pass a law in your state and make sure that the last 20 or so states that need to get passed do join the rest of the country in this regard.
Steven Newmark 09:57
Corey, beyond step therapy, what are some of the other utilization management practices that are being reformed through new healthcare laws?
Corey Greenblatt 10:03
One of the other main ways that insurance companies use utilization management is through a practice called non-medical switching. This is something that, again, is one of these things that those words are English, but they don’t necessarily mean what they mean in the English language. So non-medical switching is when an insurance company oftentimes will send a patient a letter that informs them that soon, the medication that they’re currently using, and successful on, will no longer be covered by the insurance company in the way that it has been. And instead, the insurance company wants the patient to switch to what they determined to be an equivalent and interchangeable medication. However, this medication was not what the patient’s physician originally prescribed. It’s not what the patient is currently stable on. And even if the patient has tried it in the past, there might be difficulty getting around it. And so a patient is faced with an option of either taking the new medication that’s being forced on them, or paying a sometimes ridiculously high cost to take the medication that they previously had been taking. Or they just don’t take anything at all, in which case, they oftentimes are unfortunately, in a position where they’re living in pain. And these mid year changes many times occur because insurance companies are able to receive better deals and rebates through drug manufacturers in the middle of the plan year, and they make these changes to save them money. But in the end, patients are kind of left with these kind of horrible Sophie’s Choice type options. In a way, it’s similar to if you could imagine your phone company calling you one day in the middle of the year and saying, “I know you got an iPhone that you use and you love, but we just got this new deal on an Android and so we’re going to shut down your iPhone right now and just send you this Android whether you want it or not.” And you have nothing to say in the matter. And those type of things don’t really happen in anything other than insurance. So one of our key advocacy areas at GHLF is to work in different states to try and pass laws that make it so that in the middle of a plan year, an insurance company does not have the ability to change a patient off of a medication that they are currently stable on. If a patient is using a medication that is working, then in the middle of the plan year, they don’t have to worry about being taken off of it. And that’s something we’re really working to do across the country.
Zoe Rothblatt 12:21
So in thinking about that moment, when you finally get your medication, often you’re faced with a copayment that’s part of, you know, the cost that you, the patient’s responsible for, and there’s these things called copay assistance programs, where it’s often given by a drug manufacturer that can help you pay that portion of the cost. I know I use them, many patients in our community use them. Can you talk, Corey, about the impact that utilization management has on patients who use these copay assistance programs?
Corey Greenblatt 12:49
One of the ways that insurance companies are trying to manage the use of copay assistance programs, aka utilization management, and negate their usage is through the policy known as copay accumulator adjusters. These are something that have really popped up in the last couple of years, and it become much more prevalent recently. But essentially, what it means is that if a patient uses a copay assistance program, or any other third party, to pay for a medication, your family decides to pay for it, a charity decides to pay for it, your employer decides to pay for, whatever it might be any third party, that’s not you. Any of those payments don’t count toward the patient’s deductible and out of pocket maximum. The insurance company still collects the money. But at the end of the year, they’re going to charge people twice, because they are going to say that they never paid for the medication themselves. One of the ways to kind of think about this is imagine going to a drive thru and says, You know what, I want to be a Good Samaritan and I want to pay for the person’s meal behind me. The person behind them drives up and the person at the window says, “Hey, even though the person in front of you just paid for your meal, you didn’t pay for it. So I’m going to charge you again.” The drive thru collects the money twice, and the patient now has to pay for themselves, even though that was already paid for. That’s essentially what a copay accumulator adjuster does. And so what we are, again working to do is to pass bans on these policies that would make it so that a patient who utilizes a third party payment, all of those payments will count toward the out of pocket deductible and out of pocket max. Which again, was what the insurance company had originally agreed to.
Steven Newmark 14:28
Corey, you and I spend a lot of time talking with policymakers. Talk about the importance of bringing patients with us to these meetings and what it means for particularly for our elected officials to hear directly from their constituents.
Corey Greenblatt 14:40
Yeah, I’d love to. So patient stories are the straw that stirs the drink when it comes to these advocacy initiatives. They are the most important part of these reform efforts because it allows us to connect the reforms to the legislators on a personal level. It gives them someone to think about. It gives them a story to think of when they’re trying to consider these legislations. Patient stories are really the driving force behind everything we do. They provide the real world impact that these utilization management practices have on people. And they’re vital in kind of countering the narrative that insurance companies provide, which is that these practices rarely actually impact patients. We want to show that they do impact patients. And in order to do that, we need these patient stories. So they are vital in everything we do.
Zoe Rothblatt 15:28
Corey, how can patients get started if, you know, they haven’t advocated before? Where do you get started? If you have but put it down, how do you pick it back up? What’s your advice for people, you know, looking to make noise?
Corey Greenblatt 15:41
So, a great way to start is to join the 50 State Network. If you haven’t already, it’s a way that we can start to connect with you to figure out how we can work together to raise your voice, so that you can start to speak on behalf of yourself and other patients like you who might not be able to speak up for themselves. And that’s a great starting point, because it’ll provide information on these laws. It’ll provide information on where we’re starting to be active, and how you might be able to help in these regards.
Zoe Rothblatt 16:10
Yeah, I would also add just, you know, in think about elected officials and sharing your story, just maybe start by sharing your story with your family and friends. Work on what we call an elevator pitch where, you know, you have this short, tight speech that you can say, “I’m Zoe, I have this condition. This is how these insurance practices harmed me and this is what I would like to see.” That’s always a good place to get started, get comfortable sharing with your friends and family. And then once you’re there, take it to the next level. And of course, you know, connect with us.
Steven Newmark 16:38
And of course, if you ever do meet with elected officials through the 50 State Network, Corey and I and Zoe and others in our team will help you develop that pitch.
Corey Greenblatt 16:48
That’s a great point.
Zoe Rothblatt 16:49
Definitely. Well, Corey, Steven and I always end our podcast by telling each other something we learned. I’ll start. I love that analogy you shared about the drive thru I’m going to use that one.
Steven Newmark 16:59
You took mine.
Zoe Rothblatt 17:00
Oh, no. It’s great learning all around.
Steven Newmark 17:03
I like that analogy. And I’m going to start using that going forward.
Corey Greenblatt 17:06
Well, I’m glad to help provide that. I’m going to steal my learning from last episode where I didn’t realize the amount of different types of medications patients who utilize migraine are oftentimes need to try in order to find the one that works for them, whether it’s antiseizure medications, or all the different types that Joe talked about. And if you haven’t caught that episode, really recommend you go back and catch that episode and learn more about Joe’s story and things that he’s gone through.
Steven Newmark 17:36
Well, we hope that you our audience learned something too. This episode, as well as our first episode on this topic, was made possible with support from AbbVie, sponsor of the Global Healthy Living Foundation. And we’d love to hear about any issues you’ve dealt with when it comes to utilization management. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 17:58
And who knows, whatever you share maybe included in our listener feedback portion of future episodes.
Steven Newmark 18:04
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 18:09
Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a five star rating and write a positive review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 18:26
I’m Steven Newmark. We’ll see you next time.
Narrator 18:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
EXTRA- Part 1: What is the Cheat Code for Insurance Companies
Insurance companies devise new ways to save and make money. One method is called utilization management, where insurers direct patients to treatments that are counter to what the patient’s doctor recommends. Utilization management is so important and controversial that we’re devoting two episodes to the topic, so patients are better informed and can better advocate for themselves.
“Imagine being in the exam room with me and my neurologist and then getting told by your insurance company that you’re not eligible for the treatment that you both decided would work for you. That’s what happened to me,” says Joe Coe, Director of Digital Education and Strategy at the Global Healthy Living Foundation and host of the Talking Head Pain Podcast. “And my neurologist needed to do a ton of paperwork called prior authorizations to get my medication approved.”
EXTRA - Part 1: What is the Cheat Code for Insurance Companies
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:08
Imagine being in the exam room with me and my neurologist and then getting told by your insurance company that you’re not eligible for the treatment that you both decided would work for you. That’s what happened to me. And my neurologist needed to do a ton of paperwork called prior authorizations to get my medication approved.
Steve Newmark 00:31
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense if at all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:41
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve Newmark 00:46
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:53
Okay, so Steven, today’s episode is a bit different than our usual stuff. We’re conducting a two part episode about utilization management. I know a term there, but we’ll get into it, we’ll talk about what it is and how it harms patients.
Steve Newmark 01:07
Utilization management, I think the first time I heard that term, I thought, I know those two words. But I don’t know those two words together. But for today, we’re gonna hear from a patient who is a friend of ours, on his experience with utilization management and dealing with his issue of migraine.
Zoe Rothblatt 01:22
And then in a separate episode, we’ll hear from a policy expert on how utilization management harms patients and what you can do as an advocate to help yourself and patients like you. Let’s just jump right in and set the lay of the land what’s going on with this term utilization management. So healthcare costs are rising. We talked about this when we talked about the Build Back Better Act a few episodes ago, and we talked about how people think the price of prescription drugs is unreasonable. But it’s also just the fact that health care costs are rising in general.
Steve Newmark 01:55
It’s no surprise that Americans spend a lot of money on health care each year. We have high insurance premiums, high deductibles, co pays and other out of pocket expenses. Health care costs in the U.S. have been rising for decades, are expected to keep rising. The top three spending categories are hospital care, physician services and prescription drugs.
Zoe Rothblatt 02:14
So in comes this concept called utilization management, which is one of the major ways that the high costs of health care are being addressed by insurance companies. And what happens here is that insurance companies will provide coverage for and pay for alternatives that are typically of lower costs to them. And this often happens you know, when you get your prescription medications or when you go for a test, like you know how sometimes you have to get an x ray before you can get an MRI approved. You know, stuff like that.
Steve Newmark 02:42
And in our community, people living with chronic disease, this often happens with their prescription medications. Some common examples of utilization management are prior authorization where your doctor has to get advanced approval from an insurance company. Another well known example of utilization management is step therapy, which is when you have to fail on a drug before starting on the drug prescribed by your doctor.
Zoe Rothblatt 03:05
And while it sounds great to manage costs, these tactics can also negatively impact patient access to care and contribute to provider burden, especially you know, when you’re forced to fail on a medication. And Steven, we hear about this in our community about the struggle to get access to medication, including major delays or not being able to get their prescription at all because of this. And sometimes it unfortunately leads to worsening health conditions because they haven’t been able to take their prescribed treatment. And this all raises the question, should insurance companies be able to make medical decisions for the patients that they cover?
Steve Newmark 03:41
There was a recent study that backed this up. It looked at the economic burden of drug utilization management on a bunch of different insurance companies, drug manufacturers, physicians and patients. Are you ready to hear how much money is wasted?
Zoe Rothblatt 03:54
Okay, I’m preparing to hear it. But I imagined it to be quite large.
Steve Newmark 03:58
This is a big one. The study found that physicians devote approximately $26.7 billion in time spent navigating utilization management
Zoe Rothblatt 04:07
Wow.
Steve Newmark 04:08
And patients, wait for this, spend about $35.8 billion annually in drug cost sharing even after taking advantage of support programs like copay assistance.
Zoe Rothblatt 04:19
Okay, wow, we got two B’s there. And that data isn’t even shocking, because, you know, we know about this, we hear about this. We’re health advocates, we hear about the hurdles our community has to go through, and I’ve been through it myself, but it’s really shocking to hear that impact. We also have the results of our own GHLF survey about wasting time with dealing with insurance companies. Steven, I’m going to break it down for you, there’s some numbers, so stay with me.
Steve Newmark 04:44
Sure.
Zoe Rothblatt 04:45
So our goal here as you know, was to see how many hours patients waste with insurance hurdles and then calculate that into the amount to see what patients would be owed for their time. And our survey found that on average, patients spend about 30 hours during the year dealing with health insurance issues. So we calculated the hourly wage to be $22.37. How did we get here? We estimated that patients waiting time, travel time, and treatment time can be worth as much as $35 or $15 per hour. And on average, that’s about $22 per hour. So putting all that together, if patients are spending 30 hours, that meant on average, they’re owed $686. And in total, for all the patients who filled out our survey, $109,000 were owed.
Steve Newmark 05:36
It’s not really shocking to hear data like this. And yet, it is shocking. No one should have to fight this hard to get the medication prescribed by their doctor, it’s common, you’d be hard pressed to find someone who hasn’t had to deal with utilization management in some form or another. But when you have a chronic illness, it can sometimes feel like having a full time job just to deal with these issues. It’s hard enough to take care of your health and then you’re tasked with advocating and fighting to get your medications.
Zoe Rothblatt 05:59
Exactly. And that’s what we’re here to talk about as health advocates to raise awareness about these struggles that patients go through and particularly migraine patients in our surveys. 38% of people who responded are living with migraine, it was one of the top three conditions represented. So you know, we know that migraine patients are wasting time fighting for their medications.
Steve Newmark 06:22
Many migraine patients have trouble accessing a lot of the newer migraine medications that are available because health plans force patients to try and fail other options first.
Zoe Rothblatt 06:34
That leads us right into our next section, we want to talk to a patient who has personal experience. We have with us our friend Joe Coe. Hi Joe.
Joe Coe 06:42
Thank you so much for having me on your show, Zoe and Steven. I’m a big fan.
Zoe Rothblatt 06:46
So Joe is our Director of Digital Education and Strategy at GHLF and he’s also a migraine patient and host the podcast Talking Head Pain, which we encourage all our listeners to check out.
Steve Newmark 06:58
And he has graciously agreed to come on our podcast to share his story. Joe, thank you for coming. Maybe you can start by giving us a little bit about your background and including when you first developed migraine and what went through your head both literally and figuratively.
Joe Coe 07:13
I have a hard time remembering exactly when I started getting migraine attacks. But I do vividly remember getting diagnosed by my primary care physician. And that was during college. I went to the office during an attack with a small garbage can in my hand. And that was in case I vomited. His staff immediately brought me to an exam room and turned off the lights. I was given an injection in his office and after was managed by him until about last year. Last year, I started to have some side effects that were troublesome that was caused by medication I was taking to prevent migraine. I had tried many, many medications and landed on this drug that I was on for almost five years. The symptoms included lowering my heart rate to a place that wasn’t healthy. And I was starting to get faint and passing out with routine things like blood work or going on a walk or trying to exercise. So I really needed to decide how I could manage this disease in a way that can keep me living the life that I wanted to live. I transitioned from my primary care physician to a neurologist and cardiologist in my case too, because of the heart related issues and tried to get some of the newer medications for migraine that I heard about. And that’s when I first bumped into this concept personally of utilization management.
Zoe Rothblatt 08:23
So thinking about bumping into that concept, how do you manage migraine when you’re dealing with bumping into utilization management? What happened? Were you able to get your medication and how are you feeling during that time?
Joe Coe 08:36
Utilization management, when I hear that term, it makes my skin crawl. Basically an outside entity, my insurance company is telling me and my doctor how much medication I can utilize or even what types of medications I can get. It feels like they are set up to deny us first. And we experienced this in different ways. For me, I experienced something called step therapy or fail first policies and I also had challenges of prior authorizations. So here I am a 36 year old who has lived with migraine for a long time and has been on numerous acute and prevention medications and I had to fight for my new acute migraine medication. So Zoe, imagine being in the exam room with me and my neurologist and then getting told by your insurance company that you don’t deserve or you’re not eligible for the treatment that you both decided would work for you. That’s what happened to me. And my neurologist needed to do a ton of paperwork called prior authorizations to get my medication approved. I’m happy to report that I’ve been on that medication for some time now. And it’s been tremendously helpful in reducing the pain and symptoms of my migraine attacks. I often asked myself why I waited so long to become more proactive with my treatment. And I think it’s because I knew what was going to happen, that this was going to be a battle. I knew that I was eventually going to get the medication, but I knew doing this work that there was going to be a delay. I wasn’t going to get it approved right away. I needed to pick a time when I had the emotional mental strength to really push through and decide I needed to do this. I know through the work that you guys do that this was going to be a battle. And it wasn’t going to be easy. So I mentally and emotionally prepared myself for the multiple phone calls I would have with my insurance company.
Steve Newmark 10:20
Oh, boy.
Joe Coe 10:22
Let’s stop here and think about this, we have to recognize that the three of us here on this podcast today have an employer, The Global Healthy Living Foundation that enables us to carve out time during our day to deal with things like insurance companies. People that get paid hourly wages that are working in factories that are in the service industry, for example, they don’t have that same flexibility and luxury. And for those folks, it’s even more of a struggle, because you have this second job or full time job to manage your chronic disease. And your insurance company adds a burden. And we know that people are doing this every day. And I’ve only had to do it a couple of times and it was frustrating for me. So my heart goes out to the people that have to manage this multiple times a day, multiple times a year, multiple times a month. It’s not fun, and it’s not fair.
Steve Newmark 11:08
Right? What advice do you have on dealing with insurance companies? What you just said resonated with me, the mental state you have to put yourself in. I feel like I have to block out a certain length of time, I have to mentally prepare myself that I’m going to be on hold, I have to think to myself, Okay, I’m going to do the dishes, I will come up with activities to do while this is happening, I am so prepared. And yet I still lose it when I’m dealing with this kind of stuff.
Joe Coe 11:32
So Steven, my biggest piece of advice for dealing with insurance companies is to document everything. Get a notebook, open up a Word document, however, you’re going to take notes, document everything, everyone that you’re talking to, or everything that you’ve been saying. And what’s being said to you. Get names, get dates, write how long you’ve been on the call. I think it’s interesting for us to be able to see how much time we’re spending fighting with our insurance companies. Okay, so what worked for me. Here’s what worked and it came out of frustration, the moment of anger. I asked directly to the insurance rep, what’s the cheat code? For those that don’t get my millennial video game reference picture this, if you were stuck on a level, you would go to your local video game or video store. Yes, we rented movies. And I also remember when Netflix mailed DVDs, and you would find the book or manual about the video game you were playing. When you got the cheat code, you would be the coolest kid on the block because you would know how to get to the next level. Or you would even know about a secret level. So I needed to find out the cheat code for my insurance company. So I asked, What’s the cheat code? What do I need to tell my doctor, and they’re telling me exactly what needs to be written. And as they’re saying it I’m writing it to my doctor in the electronic medical system that they provide to us. That’s another thing of privilege, I’m able to navigate the system, I have two documents open. I’m exhausted, I’m listening to this person talking on speakerphone, I’m typing in exactly what she’s saying so my doctor can then write it back to her. So after that the medication was magically approved after two to three months of fighting. So my advice, be direct, and ask them for the cheat code to get your medication. And then you can level up and be the cool kid on the block. I know it’s ridiculous, but this is how our insurance works here in America.
Zoe Rothblatt 13:19
This was something that surprised me when I was diagnosed, is how much you have to do as a patient. It wasn’t your doctor’s office calling and saying, you know, what are the magic words, what’s the cheat code? Which isn’t to say your doctor is not great. I know they’re tremendously busy and seeing patients and whatnot. But it is incumbent upon the patient these days to go and make the calls. I find myself making calls and saying, Okay, who is now responsible to get that information from the doctor? Are you calling them, am I calling them? Like you said, you really have to spell everything out and fight for it in order to get the prescription originally that your doctor intended for you to have. And you mentioned time, something I think we should touch on here is we’ve just entered the new year, that often means that your insurance resets and you have to meet your deductible again, and I know as prescription medications, I go through this, you have to get the prior authorization again and the approval. And when you think about how many people that’s happening to at once and patients are overwhelmed, doctors overwhelmed. Pharmacies are overwhelmed. The health plans are getting all these claims at the same time. I think now especially is a huge time for utilization management.
Steve Newmark 14:25
One thing I do find interesting about dealing with insurance companies versus any other customer service, the code normally is, I’m going to cancel my service. That’s the code and they say, Oh, hold on, hold on. We’ll give you HBO for free for another year or something like that. Just don’t cancel the service. But you can’t do that with insurance. Because the majority of us, if you’re on a commercial plan provided by your employer, you’re not the one selecting it necessarily. You’re of course stuck in that plan for the year and you know, there are so few companies out there, the chances of your employer necessarily changing because of you, and who knows what the other side is going to offer anyway, so the code that normally works with other customer service reps probably does not work with the insurance company. I thank you, Joe, we thank you for taking the time to come onto our program and discuss this important issue and to share your personal story of what you’ve gone through and hopefully, others can can learn from this story. It’s disturbing, let’s just say that, that chronically ill folks have to go through this in our country. But that’s where we are.
Zoe Rothblatt 15:22
Yeah, agreed. Thank you, Joe, for coming on and sharing. You’re always welcome to join us on The Health Advocates. But there’s one condition, Steven and I always end our podcasts by telling each other something we learned. I learned that it’s hard to access some of the newer migraine treatments. It’s kind of shocking, you think innovation should help patients, but patients are going through tons of roadblocks and stumbling to access the care that they need.
Steve Newmark 15:46
And I learned that perhaps the most important thing when dealing with insurance companies and trying to access the proper medications is knowing the secret code. We don’t know what that code is for each insurance company or each individual case. But once you figure out what that code is, that particular language, that’s your secret, and that’s what you need and do that every time.
Joe Coe 16:05
Thank you so much, Steven and Zoe for having me on the show. If you’re interested about learning more on migraine, you could check out the podcast that I host called Talking Head Pain. You could stream it wherever you listen to podcasts or visit Talking Head Pain.org.
Steve Newmark 16:21
Thank you to Joe Coe for joining us today.
Zoe Rothblatt 16:23
Yes, thank you, Joe. And we hope you’ll join us for part two of this series where we’ll have Corey Greenblatt, Manager of Policy and Advocacy describing in more detail about the dangers of utilization management on patient health and what you could do about it.
Steve Newmark 16:36
Thanks as always for listening. This special episode was made possible with support from AbbVie, sponsor of the Global Healthy Living Foundation.
Zoe Rothblatt 16:44
I’m Zoe Rothblatt.
Steve Newmark 16:45
I’m Steven Newmark. We’ll see you next time.
Narrator 16:51
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 3, Episode 4: COVID Mandates at the Olympics
Athletes competing in the Winter Olympics in China will get a taste of the strict safety precautions many immunocompromised people have been following since the start of the COVID-19 pandemic.
“Athletes are not eating out, they’re masking up, double masking when needed, and avoiding friends and family,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “So I guess the irony is that these super fit athletes are living life like the immunocompromised community,” responds Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
In this episode, we dive into the COVID precautions being taken in China. Plus, we discuss the fourth vaccination that immunocompromised people in the United States are now eligible to receive.
Season 3, Episode 4: COVID Mandates at the Olympics
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
Athletes traveling to the Games must produce two negative tests and everyone on the ground there will be screened each day. So for the most parts, athletes are not eating out, they’re masking up, double masking when needed, and avoiding friends and family.
Steve Newmark 00:22
So I guess the irony is that these super fit athletes are living life like the immunocompromised community. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:38
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve Newmark 00:43
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. Today we’re going to talk about the Olympics and specifically the Olympics and how COVID is impacting these Olympics that are taking place in China. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts.
Zoe Rothblatt 01:03
Yes, check them all out at GHLF.org/listen. I’ll give a plug for myself since you opened that up so nicely Steven. You can listen to Breaking Down Biosimilars. I also host that podcast with our colleague, Conner Mertens and it’s basically Biosimilars 101. You could learn all about them, you could hear about patients who are taking them and what their experience has been like.
Steve Newmark 01:25
Excellent, and Zoe, for those who don’t know, what is a biosimilar?
Zoe Rothblatt 01:28
That’s a good question. Steven. Biosimilars are a therapeutic that can help patients. They’re sort of a generic version of biologic, which patients often take when they live with complex chronic health conditions and they’re becoming more popular. So definitely check out Breaking Down Biosimilars.
Steve Newmark 01:44
Excellent. I will do that. And we also have shows that address living with various chronic conditions including gout, IBD and migraine.
Zoe Rothblatt 01:51
Definitely listen to all the great podcasts that make up the GHLF Podcast Network. Okay, Steven, ready for a listener comment? Oh, my goodness.
Steve Newmark 01:59
I am, is the comment from McIintosh?
Zoe Rothblatt 02:01
Yes, he wants to get in, he wants to advocate but for real, this one we have is from iHeart Levine. And they wrote this podcast is so informative and they break down information so it’s easy to understand. The hosts are great, too. Oh, well thank you IHeart Levine. I heart you for saying that. Ditto. And we invite all our listeners to go to Apple Podcasts, leave an honest five star reading and positive review.
Steve Newmark 02:28
Alright, Zoe we are you a fan of the Olympics?
Zoe Rothblatt 02:32
To be honest, I’m not the biggest fan. I don’t pay much attention and it kind of sneaks up on me like, oh yeah, the Olympics are happening now.
Steve Newmark 02:41
Is McIintosh a fan?
Zoe Rothblatt 02:42
I think so. He does like the winter. So maybe he can, you know, do a little spin.
Steve Newmark 02:49
Personally, I’m a big fan. I love the pageantry of the opening ceremonies, seeing all the country’s athletes enter the arena. It is particularly chilling to see the athletes competing from smaller countries.
Zoe Rothblatt 02:59
And for this year’s Winter Olympics, the biggest competition may be off the slopes, off the ice, and off the track. The biggest competition may involve the athletes versus COVID.
Steve Newmark 03:08
Right as in, don’t get COVID or you won’t be able to compete at all. These are athletes who have literally trained for years, often the bulk of their lives for this opportunity. So they don’t want to get sidelined with COVID.
Zoe Rothblatt 03:19
And China currently has this zero COVID policy.
Steve Newmark 03:22
Zero COVID. Yeah, we had that too way back in 2019. But let’s talk about China’s 2022 policy and what it means for the Olympics.
Zoe Rothblatt 03:30
So as we all know COVID started in China. And while the origins of this virus are still unknown, we do know with certainty that it did emanate from Wuhan.
Steve Newmark 03:39
And China’s early success in containing the pandemic through iron fist policies emboldened its officials, basically giving them a license to act as they saw fit when it came to curtailing the virus. Many officials in China now believe they must do everything within their power to ensure zero code infections, since it is the will of their people.
Zoe Rothblatt 03:58
And there’s millions of folks in China whose job it is to enforce the zero COVID policy especially now during the Olympics.
Steve Newmark 04:05
The policy is designed to do what it says keep cases to zero. And despite the draconian restrictions in place, it was doing what it intended. But then, of course, came the highly transmissible Omicron and with the Olympics on the way the timing could not have been worse.
Zoe Rothblatt 04:18
But China is sticking by its policy.
Steve Newmark 04:21
The authorities in China have suggested that the first Omicron case in Beijing may have come from a package in Canada. They have since called on people across China to use caution when opening mail from overseas.
Zoe Rothblatt 04:31
Even though we do know that COVID is an airborne disease.
Steve Newmark 04:35
Yep. I mean, we stopped wiping our Amazon packages way back in December of 2012.
Zoe Rothblatt 04:39
Yeah, I think I did that once and was like, we’ve had enough but no doubt they’re aggressive in China.
Steve Newmark 04:45
In China case loads are incredibly low compared to the rest of the world but not low enough for the Chinese authorities. 24 locally transmitted cases have been discovered in Beijing over the past several weeks. Neighborhoods have been sealed off and the authorities have stepped up testing requirements for entering and leaving the Capital. Officials said last week that the Olympics tickets would not be sold to the public because of concerns about the virus.
Zoe Rothblatt 05:08
This all begs the question, aren’t they vaccinated in China?
Steve Newmark 05:11
While more than 80% of the population of China, over 1.2 billion people, has had at least two vaccine doses, most received Chinese made vaccines, which studies have found to provide a little defense against Omicron infections?
Zoe Rothblatt 05:23
Well, yeah, that’s unfortunate. I will stick with my American vaccines. Thank you.
Steve Newmark 05:28
We’ve said it before. But when it comes to high quality medications and vaccines, we are living in the greatest country on Earth. We are truly lucky.
Zoe Rothblatt 05:35
That’s true. Back to zero COVID policy in China, I’ve heard that people can be held on lockdown there without notice.
Steve Newmark 05:41
Yeah, that’s right. One woman in Beijing relayed a story that as she was getting ready for bed last Friday, she received an email from her employer. The day before she had gone to an office building where she doesn’t work for an hour long meeting. And now she was being told to return there for testing and a brief quarantine. Someone who had been exposed to a person with COVID had been on the same floor of the building on a different day. But nevertheless, she was forced to spend that night and the next in the office with more than 200 people she didn’t know. Wow, that’s extremely intense, and just makes me think, bringing it back to our community, that if you’re immunocompromised, that is even more scary. You know, you’re with all these people in quarantine, you don’t know who has been exposed. This doesn’t really sound like an exposure in my opinion, it kind of ignores the science, you know, it’s been going on while we have experts saying the virus exposures, quarantine times, medications, and so on. And this sounds a bit extreme in the face of what we know. And I think particularly scary if you’re someone with an underlying condition. It is scary. To be fair, China has probably saved upwards of millions of people from getting the virus and potentially millions of people from dying as a result of the virus because of this policy. So it’s just something to behold, the extremities that they’ve gone through, what it’s done and whether it’s worth the trade off. Here’s another story, in a glitzy Shanghai shopping district, about 40 people who happen to be at Uniqlo store, were informed that they would be spending the night there. A suspected COVID case had been traced to the shop. Imagine every time you left your apartment, you don’t know if you’re gonna be stuck in a lockdown situation, you’d have to bring all your medications with you everywhere you go.
Zoe Rothblatt 07:16
Right? I can’t even think about how much I would need to pack up and just carry with me everywhere just in case. And with athletes from all over the world coming, this is really going to strain China’s policy. And as to canceling, the International Olympic Committee and Olympic organizers in Beijing have gone out of their way to emphasize that the Games will go on as planned. Asked in early December whether he could envision a situation in which the games had to be postponed, a top Olympic official was blunt. The answer is no, he said in a COVID world, you have to be flexible, and you have to be able to adapt to rapidly changing conditions. And we have that in Beijing.
Steve Newmark 07:53
Great points.
Zoe Rothblatt 07:54
How exactly are they dealing with COVID at the Games?
Steve Newmark 07:57
The protocols are similar to those at the Tokyo Olympics last summer. But even more stringent. Organizers are creating what they’re calling a closed loop system also known as a bubble, in which thousands of athletes, coaches, team officials, Olympic staff members, contractors, volunteers and journalists will be confined for the duration of the Games. The bubble will include competition sites, hotels and lodging for the athletes, media facilities and a transportation network. No one else goes in, no one comes out. Everybody at the Olympics will be required to be vaccinated. And once there, everyone will be tested every day.
Zoe Rothblatt 08:29
Wow. Sounds pretty intense. The closed loop almost brings me back to when we were in the the deep dark quarantine days.
Steve Newmark 08:36
It definitely has an impact on athletes. Imagine a young person who spent their entire life preparing for a specific event. And you go to these events and your whole life is leading towards this and you want to bring your your family with you and be around your loved ones and you’re unable to do that. Think about how that might affect you mentally, think about what we saw in the Japan Olympics last summer and how it may have impacted some of the athletes.
Zoe Rothblatt 08:59
It’s really hard not to have that support system when people with chronic illness know how important that support system is in whatever you’re doing in your life. Having your family, your loved ones there is just tremendous.
Steve Newmark 09:11
Right.
Zoe Rothblatt 09:11
Going back to the COVID precautions, obviously many athletes have to fly to China. So what are they doing in advance of the Olympics?
Steve Newmark 09:18
They’re basically imposing self quarantines. Nobody wants to mess things up now. Normally there might be some pre Olympic competitive events that athletes participate in, but not this year.
Zoe Rothblatt 09:27
Avoiding COVID-19 has of course been a goal for the athletes from the start of the pandemic. Getting sick is at odds where people’s livelihoods depend on their physical well being. But at this point, the concerns of the Olympians, young, fit and vaccinated as a whole are less about the illness or any symptoms and more about the testing regimen. Athletes traveling to the Games must produce two negative tests in the days before they fly to Beijing. And everyone on the ground there will be screened each day. So for the most parts, athletes are not eating out, they’re masking up, double masking when needed, and avoiding friends and family.
Steve Newmark 10:01
So I guess the irony is that these super fit athletes are living life like the immunocompromised community.
Zoe Rothblatt 10:06
I know what an irony, also kind of nice that people are getting a taste of of our life. But we hope the best for all the athletes at these games. Go USA.
Steve Newmark 10:15
Yes, it’s okay to take a side here and root for our country Go USA. I’ll be watching for sure.
Zoe Rothblatt 10:20
Me too. And there’s one other thing I wanted to talk about today with you, Steven, and that is this fourth COVID shot.
Steve Newmark 10:26
Ah, the fourth shot. As a reminder, the fourth shot is a booster for immunocompromised people given after five months of their last shot.
Zoe Rothblatt 10:34
People in our community are having trouble accessing these fourth shots. For instance, someone wrote into us on social media saying, I tried getting it yesterday from three different places and was turned away. And we’ve been hearing this from a bunch of immunocompromised people.
Steve Newmark 10:49
It’s really unfortunate to hear people are having trouble accessing the protections they need. It could stem from the fact that when this fourth shot recommendation first came out, it was in October and the CDC just quietly updated its website. There wasn’t a grand announcement the way it has been for other activities.
Zoe Rothblatt 11:04
Yeah, I know I was thinking about that, too. I didn’t really know about this fourth shot until early January, which is maybe okay, because no one was eligible yet in October if you have to wait five months, because the third shot was approved in August. But still, you know, as advocates, we often talk about how knowledge is power and knowing your rights and health information is just such a crucial part of staying healthy.
Steve Newmark 11:26
Right. And now we’re in a place where pharmacies may not know about the updated guidelines and patients are being turned away as a result of the confusion. It’s extremely frustrating for people to get turned away and our community is already in a vulnerable place. And to get shut down like this is really tough.
Zoe Rothblatt 11:40
Yeah, I actually have my fourth shot scheduled for this week at a local pharmacy per my doctor’s recommendation. I’m a little nervous after hearing all these stories about people getting turned away. But I’m hopeful that it’ll be okay. So Steven, as advocates, what can people do if they find themselves in this situation?
Steve Newmark 11:57
Yeah, it sounds basic, but you always want to be the best advocate you can for yourself. And I would start by having a doctor’s note handy with you to say you’re able to get one and have it printed out, hardcopy if you’re going to a local pharmacy, or try to get the shot with your provider who recommended it if that provider is offering COVID shots.
Zoe Rothblatt 12:16
Really great ideas. If anybody has any stories about getting the fourth shot successfully or not, definitely let us know. I plan to bring a note with me just in case and I’ll keep everyone updated on how it goes.
Steve Newmark 12:28
Yeah, well, good luck, Zoe.
Zoe Rothblatt 12:29
Thank you. Okay, Steven, what did you learn today?
Steve Newmark 12:32
Well, I learned sadly, that people are having trouble getting their fourth shots who need it.
Zoe Rothblatt 12:36
Yeah, it’s really unfortunate. And I learned about the zero COVID policy in China and the closed loop that will hopefully keep COVID out of the Olympics.
Steve Newmark 12:46
We hope that you learn something too. We’d love to hear from you about what you’re dealing with in terms of getting a fourth shot or anything that’s on your mind. Send your email to The Health Advocates at GHLF.org. Or better yet, include a short video or audio clip.
Zoe Rothblatt 12:59
And who knows whatever you share, maybe included in our listener feedback portion of future episodes.
Steve Newmark 13:06
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 13:10
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a five star rating and write a positive review on Apple Podcasts. And you can now rate on Spotify. But definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 13:31
I’m Steven Newmark. We’ll see you next time.
Narrator 13:36
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 3, Episode 3: Free Tests and Best Masks
With Omicron still surging in much of the United States, more people are in need of getting tested for COVID. So free at-home tests are now available to all Americans. At the same time, there is new guidance for what type of mask we should be wearing to stay safe. In this episode, we provide useful information on how to obtain at-home tests and which masks are recommended.
“Now, we have the KN95, which is the Chinese respirator standard. These may be more likely to be a fake. I bring this up because I actually think I bought a fake one. I was a little disappointed to find out when I did my research,” reveals Zoe. “You got some fake ones?,” asks Steven. “Yeah, I think so,” laments Zoe.
Season 3, Episode 3: Free Tests and Best Masks
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
Now we have the KN 95, which is the Chinese respirator standard. These may be more likely to be a fake. I bring this up because I actually think I bought a fake one. I was a little disappointed to find out when I did my research.
Steve Newmark 00:21
You got some fake ones?
Zoe Rothblatt 00:22
Yeah, I think so.
Steve Newmark 00:26
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:36
And I’m Zoe Rotblat, Patient Advocate and Community Outreach Manager at GHLF.
Steve Newmark 00:41
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. Before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from.
Zoe Rothblatt 00:55
Yes, that’s right. And you can check them all out at GHLF.org/listen. For those interested in a deeper dive on policy topics, definitely listen to our colleagues, Robert Popovian and Conner Mertens on Healthcare Matters.
Steve Newmark 01:11
We also have shows that address living with various chronic conditions including gout, IBD, and migraine.
Zoe Rothblatt 01:17
Yeah, I would say definitely take a listen to all the great podcasts that make up the GHLF universe. It’s really fun. And you could do a deep dive into many different topics. Steven, let’s start as we always do with a listener comment. Are you ready?
Steve Newmark 01:30
I’m ready.
Zoe Rothblatt 01:30
Okay, so this one is from AlGlass12. And they wrote, This is super helpful for keeping me informed on what is happening.
Steve Newmark 01:38
Great. That’s what we’re trying to do is keep folks informed. Keep it light.
Zoe Rothblatt 01:41
Yes, thank you for your comment. And we invite all our listeners to go to Apple Podcasts to leave an honest five star rating and a positive review. Steven last week, we mentioned that COVID tests which are great tool for staying safe will be available for free reimbursement from insurance. So of course, we thought today would be a great day to talk about how we can actually do all this.
Steve Newmark 02:03
If we’re going to play Policy Advocates for patients, we should use our knowledge to provide important ways to take advantage of health policies.
Zoe Rothblatt 02:10
So let’s start with insurance coverage for at home rapid tests. As you may be aware, the Biden administration announced that effective January 15, private insurance companies are required to cover over the counter at home rapid COVID tests that are authorized by the US Food and Drug Administration, the FDA.
Steve Newmark 02:29
Yes. And before purchasing any add home rapid tests for reimbursement, please do call your health insurance provider to verify that it is offering this benefit.
Zoe Rothblatt 02:38
Right? That’s always a good idea. We talked last week about surprise billing. Always, always double check.
Steve Newmark 02:44
Right, you don’t want to surprise medical testing bill there.
Zoe Rothblatt 02:46
And now that it’s covered, you know, why not take advantage. So private insurance plans are required to cover eight individual at home over the counter COVID test per month for each individual on the plan. So what that saying is that if you’re a family of four, you can get 32 tests per month for free.
Steve Newmark 03:03
The tests will either be free directly at the point of sale, if your health plan provides for direct coverage, or by reimbursement if you are charged for your test. Be sure to keep a receipt if you need to submit a claim to your insurance for reimbursement.
Zoe Rothblatt 03:16
Obviously, it’s always hurdles to submit for reimbursement, it takes up time. So the Biden administration is strongly incentivizing health plans and insurers to just set up a network of convenient locations across the country. So this is things like pharmacies or retailers where people with private health coverage will be able to online order, walk in and pick up the at home over the counter tests for free. Rather than going to the process of backwards you know buying it and submitting it for reimbursement. If you have your private insurance plan, you should definitely call the number on the back of the card to see if you’re able to get these over the counter tests for free at a place or online or whether you’ll need to submit a claim for reimbursement.
Steve Newmark 03:57
If your plan has a network of preferred stores, pharmacies and online retailers at which you can obtain a test with no out of pocket expense, you can still obtain tests from other retailers if you buy them outside of that network. Your plan is required to reimburse you at a rate of up to $12 per individual test, or the cost of the test if it’s less than $12. Save your receipts to submit to your plan for reimbursement at a rate of up to $12 per individual.
Zoe Rothblatt 04:23
There’s a lot there. It’s not easy.
Steve Newmark 04:25
Is anything ever easy when it comes to health insurance?
Zoe Rothblatt 04:28
No, it’s not easy, and there’s a lot of acronyms and hoops to jump through. But unfortunately also insurers are not responsible for reimbursing test kits purchased before January 15 when this went into effect. Some states do require insurers to process and reimburse claims for test kits purchased on or after December 1. So you can always call your plan and see if that’s possible. But this is one of those policies that’s just effective now moving forward.
Steve Newmark 04:54
Yeah, it’s confusing and it’s not fun. But you know, remember private health insurance in the United States was not set up for over the counter reimbursements for tests like this. It’s a new endeavor to deal with such reimbursements, which was essentially forced on insurers by the Biden administration.
Zoe Rothblatt 05:08
And for those people who are not on private insurance, there are some options. You can obtain free tests through the federal government. So to supplement this COVID-19 testing that’s available at community testing sites and at home rapid tests are available for purchase in retail establishments, individuals will be able to order for a total of four at home rapid tests per households by going to COVIDTests.gov. And there’s also going to be a free call line. I don’t believe the number has been put out yet.
Steve Newmark 05:38
It’s not I just checked COVIDTest.gov and the call line is still not active.
Zoe Rothblatt 05:42
So we’ll keep our listeners updated on that. But in the meantime, COVIDTests.gov is where you can go.
Steve Newmark 05:48
And it’s unclear whether individuals will be able to place orders for additional tests. There are no shipping costs, and you will not be asked to provide a credit card number. Individuals will be asked to provide their name and residential mailing address, as well as their email address if they want to receive order status updates. Tests will be shipped to addresses in the continental United States through first class package services. Tests shipped to Alaska, Hawaii, and the US territories will be sent through a priority mail. Tests are estimated to arrive seven to 12 days after placing an order.
Zoe Rothblatt 06:17
It’s important to note that as we’ve previously experienced during the pandemic, there’s going to be a very high volume of people placing orders for tests, which may cause the website to crash. So patience is really important here.
Steve Newmark 06:30
Yeah, although we also know that patience is in very short supply after two years of COVID. It’s even in shorter supply than tests, I think.
Zoe Rothblatt 06:37
Yeah, I agree with my patients is wearing thin. It’s definitely frustrating out there. So let’s turn to another topic on COVID. Steven, there’s new mask guidance.
Steve Newmark 06:51
Yeah, I’m a total mask nerd. I’m also a little bit of a mask shamer. I like to give the side eye to anyone not wearing a mask or not wearing it properly.
Zoe Rothblatt 06:58
Oh, I like that flipping the mask shame. So until recently, the CDC, the US Centers for Disease Control and Prevention didn’t recommend a specific type of mask. Prior to this change, the CDC just said, you know wear masks have two or more layers that fits snugly covering the nose and mouth. And now they’re saying that the N 95 or KN 95 offers the highest level of protection against the Omicron variant.
Steve Newmark 07:22
I think that the CDC is sort of in line with certainly what I’ve been doing and I think what a lot of our listeners have been doing if you read our recommendations at GHLF.org on masks, this is guidance that we have put forth for the last several weeks. So it’s good to see the CDC catching up to us. They’re doing so because as we know Omicron is highly transmissible. The 95 masks are designed to filter at least 95% of the particles in the air, including viruses and bacteria.
Zoe Rothblatt 07:50
Which like you mentioned is especially important for our community who are immunocompromised or at high risk for COVID because of underlying health issues to stay as protected as possible. And this gets confusing. I actually just learned the differences between these masks. And it’s really all about location and regulation. So the N 95s are made by the US government standards and are rigorously tested. So they’re always a reliable choice. The KF 94 is South Korean standard. And they’re regulated by the Korean government. And then we have the KN 95, which is the Chinese respirators standard, but they’re not as strictly regulated by the Chinese government. So these may be more likely to be a fake. I bring this up because I actually think I bought a fake one. I was a little disappointed to find out when I did my research.
Steve Newmark 08:37
You got some fake ones?
Zoe Rothblatt 08:38
Yeah, I think so. Yeah, there are some clues, though, to detect if it’s fake, like the KN 95s are supposed to be stamped with both the company name and the respirator standard number. So if your KN 95 is missing those like mine was, it’s probably not authentic.
Steve Newmark 08:54
Interesting, I would go so far as to say, if you know you’re going to be in a crowded place, I would go with the N 95s. But first, let’s just back up a little bit. If you remember, at the beginning of the pandemic, we were told not to wear these types of masks actually, at the very beginning, we were told not to wear masks at all. But then there was a shortage of masks and we were told specifically not to use the N 95s because they were needed for medical personnel. That is no longer the case. There’s no longer a shortage. These masks are not that expensive. They cost depending on how much you buy or where you get them from the N 95s and also the K 95s cost roughly one to $2 each, and you can wear them on multiple occasions, depending on how many hours a day that you’re wearing them. It’s not uncommon for doctors to wear them for up to five days for example, the N 95s. The one major problem with the N 95 is some people complain that because they’re so good at filtering particles, it makes it a little tougher to breathe. That said that’s how you know it’s working I suppose. And it’s definitely your top choice when in a crowded area. I use it if I’m on the New York City subway for example. I pull out my N 95. My go to mask, I like the KF 95, that’s the South Korean one that you mentioned. The KF 95 is less likely to be a fake and fraudulent. I also find it has a little bit more breathing room than the KN 95. That’s sort of my everyday mask, you know, those are like the jeans of the mask world so to speak, your every day. Very easy to wear, you know, if you’re going to pop into a store for a couple of minutes, very simple to walk around with that and breathe the KN 95s you know, it’s just more of a stylistic issue. If you find it more comfortable, but be a little bit more wary about trying to find one that’s fake. One other thing about the N 95s and all these masks, you really do want to make sure that they’re close and tight fitting, and you can get guidance on that all over the internet. YouTube has many, many videos on how to make sure that they’re tight fitting properly.
Zoe Rothblatt 10:44
Yeah, you definitely want to make sure it has that like nose clip piece, because that’s key in keeping the tight fit. It’s interesting, you bring up how you know in the beginning of the pandemic, we were told not to get the masks and don’t take them away. Once they said wear the masks, it was kind of hard to get them and they were being sold for pretty expensive. And I’m seeing similar with these 95 masks now that they’re recommended. They’re a little bit out of stock. And I saw, I looked on Amazon, which is where I got my fake one. So actually, this is good advice for our listeners Project N 95 is a really good place to get legit masks. And it’s expensive in the sense that you have to buy a box. So you know, it could be like 40 or $50 because you can’t just buy one or two of them when you buy on on these websites. But like you mentioned, you can rewear them and you know maybe pull in a friend and and try to split the cost together. That’s what I did. It’s expensive and maybe hard to find in some cases. According to our recent COVID-19 Patient Support Program poll, nearly 25% of survey respondents said they had difficulty accessing N 95 or KN 95 masks during this Omicron surge. So, you know, we know that some of our listeners are having trouble.
Steve Newmark 11:56
Let me just take a step back, I just want to mention Project N 95.org. That’s a nonprofit that is sort of your trusted place to look for non fake masks. So that’s the first thing I would mention. The second thing Yeah, like you said, if you buy in bulk, if you buy a lot, the cost can sound pretty damning. But when you analyze it on a per mask basis, it’s not so bad. And who knows how long the pandemic will last, you may, you may need all of those masks, frankly. And you know, there’ll be times in the future that there could be a flu epidemic, you know, in three years or something that you want a good mask for. So get the masks if you can. In terms of finding them, this is anecdotal, I also have not been able to find any of these in any retail stores, I’ve only been able to find them online. I’ve seen N 95 masks sold at hardware stores. But only in packages of one or two. I’ve not seen a bulk purchase and the packages of one or two are much costlier, six to $7 per mask. And I would start with Project N 95.org. And also to help with this, the Biden administration recently announced that it will make some of these high quality masks available to Americans for free. There’s even a plan in the works, supposedly to mail N 95 masks to all Americans.
Zoe Rothblatt 13:07
It does feel a little bit late to have all these things coming. I wish we had them sooner in the pandemic, you know, we’re getting free tests and masks, but it’s better late than never. And in the meantime, any mask is still better than no mask if you can’t get your hands on one of these 95s. You can double mask with a disposable mask under a cloth mask and you know our regular tools, social distancing, get your booster shot when available and do what you can. So I guess the elephant in the room, the Omicron update. Is it peaking? Has it peaked? When will it peak?
Steve Newmark 13:39
Yes, yes. And yes. Or soon. Or maybe. Or it has. The answers to those questions really depends where you live. The very good news is that we’re seeing declines in places that experienced the earliest waves of COVID like New York, Washington, Boston, and the Northeast, generally.
Zoe Rothblatt 13:56
Great news. And it definitely follows what we saw in South Africa and elsewhere. It really could be a steep decline.
Steve Newmark 14:02
Yes, but let’s not get too excited going from 110 miles per hour to 90 miles per hour doesn’t mean you’re in the safe zone just yet. But we are trending in the right direction in the areas that were hit first.
Zoe Rothblatt 14:13
And other parts of the country are at or possibly near the peak. But it’s a very scary time in the US. The Surgeon General warned that Omicron surge of cases has not peaked yet nationally and that the next few weeks will be very difficult in many parts of the country as hospitalizations and deaths rise, which is I think what the experts are saying to look at now more than cases because case records are just so high that looking at hospitalizations, and death is a more accurate depiction of what’s going on.
Steve Newmark 14:41
That’s probably true. My data nerd side of me says more data is always a good thing as long as it’s used in the proper way. So I don’t have a problem with getting more data, obtaining more data. But yes, I would say that the hospitalizations and deaths percentages are a bigger deal. Of course even though Omicron is milder, the fact that it’s so omnipresent, the sheer numbers means that we are seeing hospitals overwhelmed, although again, not necessarily the ICU units, but it’s simply a case of too many folks who end up showing up at hospitals. But much like the beginning of the pandemic, the early stages of Omicron have mostly been tied to urban areas, because of travel to those areas. And of course, those areas are densely packed. So we’ll likely see Omicron sweep across the country hitting more rural sections over the coming weeks.
Zoe Rothblatt 15:27
Which is a bit scary because many of the nation’s rural counties have lower vaccination rates than their urban counterparts. And also there are not a lot of hospitals in rural areas or even ICU beds to care for severely ill so you know, while many people infected with Omicron had no or mild symptoms, others especially unvaccinated and people with chronic conditions can have more serious illness that needs this hospital attention.
Steve Newmark 15:54
Bottom line to staying safe, is get your free COVID tests wear the right masks and of course, get vaccinated.
Zoe Rothblatt 16:00
That’s a good point, do what you need to do. Before we wrap up, let’s take a look at the vaccine numbers. Nearly 63% of the US population is fully vaccinated so either two shots or one J&J, but only 38% of those have received their booster. I was actually reading that some experts are arguing that the definition of fully vaccinated should change to include the booster at this point. So we’ll see if that becomes the new term.
Steve Newmark 16:31
I am not an expert in virology or epidemiology, but I would be one to argue that three shots should be what we consider to be a fully vaccinated.
Zoe Rothblatt 16:38
Yeah, me too. Okay, Steven, that brings us to the close of our show. And as we do each week, I’ll ask what did you learn today?
Steve Newmark 16:44
Well, I’ll start with what we just spoke about that only 38% of folks who are vaccinated, have received their booster which is disappointingly low.
Zoe Rothblatt 16:52
Agreed, and I learned that hopefully masks are coming soon, free mass will be sent out by the US government so I’m eager for that.
Steve Newmark 17:02
Well, we hope you learned something too. We’d love to hear from you about what’s going on with Omicron, your masking situation. Send your email to The Health [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 17:15
And who knows whatever you share, maybe included in our listener feedback portion of future episodes.
Steve Newmark 17:22
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 17:27
Well, everyone thank you for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a five star rating and write a positive review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 17:45
I’m Steven Newmark. We’ll see you next time.
17:50
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network
Season 3, Episode 2: The Best Surprise, Is No Surprise
Patients will benefit from a new law that took effect to start this year, making it illegal for doctors and medical institutions to send surprise bills to patients. It’s estimated that 10 million surprise bills are sent to patients, usually when they have no choice but to use an out-of-network provider, often during emergency room visits.
“When you’re lying on the table there with that big bright light in your face about to go under, you’re not necessarily thinking, Hey, are you in my network?,” says Zoe. Steven adds, “It’s not even like you could say, wait a minute before we start, are you in my network? But the good news is surprise medical bills are now, surprise, illegal.”
Season 3, Episode 2: The Best Surprise, Is No Surprise
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
When you’re lying on the table there with that big bright light in your face about to go under, you’re not necessarily thinking, Hey, are you in my network? And you know, what are you going to do, stop the whole thing?
Steve Newmark 00:19
It’s not even like you could say, wait a minute before we start, are you in my network? But the good news is surprise medical bills are now, surprise, illegal. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:39
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve Newmark 00:44
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:51
Okay, let’s start as we always do with a listener comment. Are you ready, Steven?
Steve Newmark 00:55
I’m ready.
Zoe Rothblatt 00:56
This one is from KMJeff. And they wrote, bright, informative news. Great option.
Steve Newmark 01:01
Very bright, very informative. That’s how I would describe KMJeff actually.
Zoe Rothblatt 01:05
Love it. Well, KMJeff, thanks for your comment. And we invite all of our listeners to go to Apple Podcasts to leave an honest five star rating and positive review.
Steve Newmark 01:15
Well, today, we want to talk about a new law that went into effect that addresses surprise medical bills that we all deal with. But before we do, let’s do a little check in on round 31, as it is of the pandemic.
Zoe Rothblatt 01:26
I know, when you say round 31, when people talk about you know, we’re going into phase three of the pandemic, I have no idea what they’re talking about, like in the first year we were in the third wave. But yeah, it does feel like it’s just dragging on.
Steve Newmark 01:39
Yeah.
Zoe Rothblatt 01:39
We’re here in 2022 and it’s very present, more present than it has been from the summer to now, it’s it’s a lot.
Steve Newmark 01:46
Well, kudos to anyone whose brain has not melted in the past month. I was doom scrolling the other day COVID rates in my neighborhood. And the graph I think was vertical. The past month, I’ve learned that all the cloth masks that I splurged on, they don’t actually work. We have to wear masks essentially, don’t let us breathe, or maybe we have to stop breathing. That’s the rule. Now I’m hearing that the tests which we can’t even get, don’t necessarily test positive if you have Omicron because Omicron is likely in your throat and not your nose. It’s a crazy time.
Zoe Rothblatt 02:13
My friend was flying international and they did the PCR test at the airport, I guess and they swabbed her throat.
Steve Newmark 02:20
Wow.
Zoe Rothblatt 02:20
It was the first time that that happened. They they did the throat and then the nostril. That might be something that we’ll begin to see soon.
Steve Newmark 02:28
My wife when she tests she started to do the back of the throat thing, but I’m not sticking a giant Q tip in the back of my throat. That’s a little too much for me.
Zoe Rothblatt 02:36
The strep test is unbearable enough.
Steve Newmark 02:38
Yeah, no, it’s true. It’s like a strep test. But at least it’s a medical professional is doing that. I’m not doing that myself. I really hope that we are at the peak of Omicron and it’s going to start to precipitously decline in the coming days and weeks, but right now it’s a scary time of course. And I’ve been thinking on a personal level a lot about the schools. I thought this was settled, we’re going to schools open no matter what. It’s too important for our kids mental well being. Parents need to work. Kids, even those who are unvaccinated are going to be okay. But now I’m starting to realize it’s it’s not so simple. You know, what do you do when teachers are calling out sick in mass? What about students? Does the teacher continue a lesson plan when only half the kids are present, or they default to just showing movies all day. In New York City last Friday, there was 44% attendance at the public schools. It’s very disruptive, the anxiety of feeling like you’re just waiting for it to happen. Thankfully, the tests are back in stock, at least at our local pharmacy.
Zoe Rothblatt 03:30
My local pharmacy has just signs taped all over the glass doors and windows. We’re all out. We’re all out. I’ve managed to order some online that’s been successful for me. I’ve yet though to submit it to my insurance, which I’m curious to do to see if I get a reimbursement.
Steve Newmark 03:46
Good luck.
Zoe Rothblatt 03:47
Well, you’re supposed to be able to do that now. Right?
Steve Newmark 03:50
It starts Saturday, January 15th. You’re able to get up to eight tests per month. You’re supposed to go to the pharmacy directed by your insurance company, essentially where your pharmacy benefits manager asks you to go and then it will be free. If you do not go to that pharmacy, then you’d have to apply for reimbursement. So it has an additional step plus you have to outlay the money yourself. So the last few weeks we focus a lot on Omicron in this podcast. But today we want to transition to talk about a new law that has taken effect starting on January 1st. Surprise medical bills are now, surprise, illegal.
Zoe Rothblatt 04:26
I honestly didn’t know about these new protections until you brought it up a few days ago. So I’m excited that you know we’re here today to talk about it and inform our community about these protections. And you’ll learn, ourselves along the way.
Steve Newmark 04:38
Before we get into it, let’s take a step back and talk about what surprise bills are and the challenges patients go through.
Zoe Rothblatt 04:44
Good idea. So surprise billing is when a patient gets a bill unexpectedly, hence the name surprise, and it’s usually for a substantial amount of money because they inadvertently got care from an out of network provider, meaning their health insurance doesn’t cover the services from that provider. And unfortunately, what a patient does get a bill like this, it’s really up to the patient to try and get it fixed if you can, and it’s a huge financial strain, mental and emotional burden on patients to be dealing with this.
Steve Newmark 05:14
And this typically happens in a hospital setting or in an emergency situation. This is because often doctors who work in hospitals don’t necessarily work for the hospital. It’s confusing, I know. So these doctors bill independently from the hospital and do not necessarily participate in the same health plan networks. Also, surprise bills are not uncommon. Sometimes you’re having a procedure in a hospital and there are multiple medical providers, an anesthesiologist, for example, who does not work for the hospital, and is not in your participating plan network, and thus, you get a different bill. And it’s a surprise. So you ready, here are some stats?
Zoe Rothblatt 05:51
Okay, go for it.
Steve Newmark 05:52
According to the Federal Government, roughly 10 million surprise bills are typically sent out in a year.
Zoe Rothblatt 05:57
Wow. 10 million.
Steve Newmark 05:59
Yep. And by some estimates, as many as one in five, all emergency room visits involve out of network care.
Zoe Rothblatt 06:05
That is really concerning one in five, especially for our community who lives with chronic disease. I know that before I was diagnosed, I ended up in the emergency room frequently with these mysterious symptoms that obviously were part of a chronic illness. But when you’re experiencing these symptoms, and you’re in such a bad way, you go to the emergency room, and it doesn’t really cross your mind to think, oh, is this doctor in my network, you’re in such a desperate place, you’re trying to get any help you can and you don’t really have a choice, you’re just lying in that bed and people are opening the curtain and coming in.
Steve Newmark 06:35
Yeah, you’re in a desperate place, like you said. Financially. If you get stuck with one of these surprise bills, particularly it can put people in devastating debt. Some examples of anesthesiology and pathology surprise, bills have exceeded $20,000 at a time.
Zoe Rothblatt 06:48
$20,000 is just beyond, thankfully, I’ve never had a bill like that. But I wouldn’t be surprised if one of our listeners has, given how common it is. I will say that last summer I got a bill for $2,000. And I was freaking out. And it turns out it was a mistake, but still intimidating. And this all begs the question, you know, what protections do patients have? And I think this leads us into the good news from the top of the episode.
Steve Newmark 07:14
Yes. And it comes in the No Surprises Act, which establishes new federal protections against surprise medical bills. This change is the result of legislation passed during the Trump Administration. The law requires the Biden Administration to set up a national consumer complaint system. So if you have a complaint, you’ll be able to call a toll free number or submit a complaint online to get federal help investigating the bill.
Zoe Rothblatt 07:36
And there’s a few scenarios that the law provides protections for against surprise billing. So our first scenario is emergency services. Have you ever just like been in an emergency room, you know, you’re lying there, they’re opening the curtain, different doctors are coming in. Also, sometimes the shifts even change when you’re there and then all sudden you’re hit with this huge bill after…
Steve Newmark 07:57
Right.
Zoe Rothblatt 07:57
Like you had no say in the matter.
Steve Newmark 07:59
So that is a very common surprise bill that people have been hit with. But under this law, if you have health insurance and are having a medical emergency and go to an urgent care center or an emergency room, you can’t be charged more than the cost sharing you’re accustomed to for in network services. So essentially, what that means is, when you’re dealing with an emergency, you don’t need to take the time to figure out well, how am I going to make sure that this is in network? How am I going to make sure I don’t get hit with a surprise bill? This law will now cover emergency services. So you don’t get hit with that surprise.
Zoe Rothblatt 08:27
Which is such good news because there’s already so much to advocate for when you’re a patient, like the financial aspects should just be covered. So this is saying that you still will be responsible for a portion of the bill like your deductible or co-payment. But these are typical expenses. Hopefully no more surprises. And if you do get a surprise, even like you mentioned, you can call that toll free number.
Steve Newmark 08:47
Exactly. So the next scenario is not quite ideal, but it’s dealing with ambulances. So you have an emergency, you need to call an ambulance. Unfortunately, the new law does not cover ground transportation for ambulances. It does offer some protections against surprise medical bills from air lifts that you may need.
Zoe Rothblatt 09:05
Okay. Okay, so we are making progress. But clearly not enough. I think the average person is doing an ambulance on the road and not air travel. But those ambulances do get extremely expensive.
Steve Newmark 09:18
Very expensive. So that is helpful. And look, it’s a first step. Very rarely in the world of public policy does one law solve a problem per se. And yes, you’re not going to call 911 and start asking them to send you an ambulance that’s in your network or any of that thing, but we’re moving in the right direction at least. So next we have routine hospital procedures.
Zoe Rothblatt 09:38
These are things like scheduled services, which is of particular interest to our community. You could have a knee operation, colonoscopy, which often comes up when you have a chronic condition. They’re costly.
Steve Newmark 09:49
Absolutely. If you ever get a procedure, I always think of it like a play. You get dressed and they lead you into the room. All the other, these actors are there. You should know who the main actor is. That’s your doctor. But there are all these other health professionals and most notably, there’s an anesthesiologist. And sometimes on the back end, there are folks who would look at your lab results, things of that nature. You don’t know necessarily who those folks are. And they may not be in your health insurance network.
Zoe Rothblatt 10:14
And when you’re lying on the table there with that big, bright light in your face about to go under, you’re not necessarily thinking, Hey, are you in my network? And you know, what are you going to do, stop the whole thing when, when it’s already almost too late?
Steve Newmark 10:26
It’s not even like you can say, wait a minute, before we start, let me just check your credentials here, are you in my network? But the good news is, this new law says if you choose a facility and a main doctor, that is in your insurance plan’s network, you cannot receive a surprise medical bill from anyone else who treats you. This addresses a large problem because surprise bills often come from folks like I mentioned anesthesiologists, radiologists, pathologists, assistant surgeons and laboratories on the back end.
Zoe Rothblatt 10:53
And if you do get a bill, of course, we have this helpline.
Steve Newmark 10:56
The phone number to call if you have a problem is 1-800-985-3059.
Zoe Rothblatt 11:02
So Steven, this begs the question, does this mean that patients will never be surprised by a medical bill?
Steve Newmark 11:08
Absolutely not, sorry. I’m always surprised by medical bill, they send them out so late, I get a bill three months after I had a procedure. I’m like, I don’t remember having that procedure. I’m not paying this bill. What is this?
Zoe Rothblatt 11:17
I know and there’s just like one small code that you have to start frantically Googling, figure out what was this.
Steve Newmark 11:23
Yeah, you’re gonna still be surprised. But if you have insurance, you now have these greater protections. If you have insurance with a high deductible, or have high coinsurance, or you have to pay a percentage of your medical charges, you still could get a big bill in the mail after any medical care. Patients are able to give written consent to waive their rights under this law, and be billed by out of network providers if they so decide. The patient is of course not required to sign this. And you can do your best to find an in network provider or facility instead. But either way, you shouldn’t be surprised by the bill.
Zoe Rothblatt 11:54
My best advice to avoid a surprise bill or a high bill is just try your best to confirm that the doctor is in network. You know, you could do this by asking your doctor’s office if they accept your insurance, or calling your health plan. There’s usually a phone number on the back of your insurance card for members services. And you can ask them to see if this provider is covered. It’s great that we have all these protections for patients. But I’m wondering how is the law enforced? You know what’s to stop someone from sending a surprise bill?
Steve Newmark 12:23
That’s a good question. The federal government has responsibility of enforcement for most private health plans, and states will lead enforcement for state regulated health plans. The No Surprises Act requires the Department of Labor to do annual audits of claims data from up to 25 health group plans to monitor compliance. Health and Human Services will also conduct up to nine audits annually of compliance by state and local government employer plans. And states also have a primary role in enforcing the rules against health providers, and the federal government will enforce these as a backup.
Zoe Rothblatt 12:54
Okay, so it sounds promising and like there are safeguards in place. What do you do in the event that you do get a bill. We quoted earlier in this episode that 10 million surprise bills are sent annually. So I’m sure we can, you know, expect some bumps in the road and bills to pop up here and there. I don’t think the 10 million is going to disappear all at once. So what can you do?
Steve Newmark 13:14
The answer always advocate, you can appeal health plan denials. So if you get your bill that you’re not expecting submit a claim to your health insurance, and if that is denied, you can also submit an appeal. Annoying I know. But it’s part of this process of health care in our country. Also a national consumer complaint system was established as part of this law. You can go online to find the number for the No Surprises Help Desk and get help there.
Zoe Rothblatt 13:40
All good news there in terms of protections for patients and no more surprise billings. That brings us to the close of our show. Steven, what did you learn today?
Steve Newmark 13:49
Okay, this was a good one. I learned that January 15th we are entitled to up to eight free COVID test kits per month.
Zoe Rothblatt 13:56
I learned that too. But another learning is that almost one in five emergency services result in surprise billing. That’s pretty shocking to me.
Steve Newmark 14:07
Well, we hope you learned something too. We’d love to hear from you about what’s going on with the pandemic, about if you’re dealing with any surprise bills, please send your email to The Health Advocates at GHLF dot org. Or better yet include a short video or audio clip.
Zoe Rothblatt 14:21
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 14:28
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 14:33
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a five star rating and write a positive review on Apple Podcasts. And hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 14:52
I’m Steven Newmark. We’ll see you next time.
Narrator 14:57
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network
Season 3, Episode 1: Omicron: An Excess of Selfishness
As we start a New Year with the Omicron variant raging, there’s both a sense of hope and concern. There’s hope that symptoms are mild and we could reach herd immunity — and there’s concern that many people still aren’t vaccinated and refuse to wear masks.
In this episode, co-host Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation, tells the story of a person who recently refused to put on a mask in her apartment building, despite the known mask policy. “The doorman politely said, ‘Could you please put a mask on?’ And then the guy said, ‘Everyone I know has COVID, I’ll just get it when I get it. If it’s my time to go, it’s my time to go. Why do we even need this?’ And I was standing right there being like, you have no idea that you think this is a young healthy group here, but it’s not and people are living with serious conditions,” laments Zoe.
Season 3, Episode 1: Omicron: An Excess of Selfishness
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
I was walking into my apartment and another person was walking in and my apartment has a mask policy, you must wear a mask, and the doorman politely said, “Could you please put a mask on?” And then the guy said, “Everyone I know has COVID, I’ll just get it when I get it. It’s my time to go, it’s my time to go. Why do we even need this?” And I was standing right there being like, you have no idea that you think this is a young healthy group here, but it’s not and people are living with serious conditions.
Steve Newmark 00:39
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:49
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve Newmark 00:54
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.
Zoe Rothblatt 01:01
Well, Steven, Happy New Year, we’re back at season three.
Steve Newmark 01:04
Yes, happy 2022, year of the Omicron, I suppose.
Zoe Rothblatt 01:08
Yep. That is what’s happening here, there and everywhere. But before we get into that, let’s start as we always do with a listener comment. Are you ready?
Steve Newmark 01:17
I’m ready. First comment of 2022.
Zoe Rothblatt 01:20
Okay, this is a fun one. It’s a little bit different. It came from the free response section of our COVID Support Program, Quick Poll about how people are feeling about Omicron. And one person left us specifically a comment. They wrote, I’m taking COVID and Omicron very seriously. This is to make you smile, anyone who takes Omicron less seriously than me as an idiot. And anyone who takes Omicron more seriously than me is a maniac.
Steve Newmark 01:45
Great. Well, that’s from our last episode where I butchered that great joke from George Carlin. George and this commentator are definitely right, everyone besides me is an idiot. If I have learned nothing else in the past two years, I’ve learned that.
George Carlin 01:57
Have you ever noticed when you’re driving, that anyone who’s driving slower than you is an idiot? And anyone driving faster than you is a maniac?
Steve Newmark 02:08
Zoe, can you just take a moment and explain what the COVID Support Program is?
Zoe Rothblatt 02:11
GHLF, Global Healthy Living Foundation, our organization has a COVID-19 Patient Support Program. If you go to GHLF.org, you’ll be able to find it. And basically, we just provide regular newsletters, quick polls, updates about what’s going on with COVID. You can hear personal patient stories about you know what it’s like to get the vaccine, is the vaccine safe for you? How are you feeling mental health wise, it’s a full range of topics and a really great support during this time.
Steve Newmark 02:37
All right. With that, let’s get ready to jump right into it. It’s a new year, and we have new problems. Omicron, if you don’t know what Omicron is, I suppose that makes you extremely lucky because it means you’re living on some remote island somewhere with no access to the internet.
Zoe Rothblatt 02:49
And no access to podcasts. We start 2022 with sobering news, though there are some reasons to be hopeful. Omicron is tearing through our country and through the world and it’s definitely taking no prisoners. I’m not sure we should even look at case counts anymore, are north of 25% in part of the country.
Steve Newmark 03:07
And those are only the publicly reported cases, the ones where folks test at a public facility, or even bother testing at all.
Zoe Rothblatt 03:13
Right, because if you do an at home test, it’s not reported till you go to the center and get the official test. There’s probably more than we know. The good news is that hospitalization rates are not increasing to alarming rates just yet. And another positive is that we saw in South Africa where we first detected this variant that after the sharp increase, there was an equally sharp decrease meaning Omicron comes on fast, but hopefully it should leave quickly as well.
Steve Newmark 03:39
So for the general population, symptoms have tended to be mild or non existent for the healthy and vaccinated. Of course, we always have a special concern for the immunocompromised. Our one positive is that this variant is clearly less powerful. I hate to say it could always be worse, but it truly could always be worse. Also, if you are able to hunker down, this variant should come and go somewhat quickly based upon what we’re seeing. Experts are predicting peaks in mid January, depending on where you live, followed by sharp decreases.
Zoe Rothblatt 04:09
And thinking about what areas are experiencing these peaks, the nation’s count is already reaching record levels through the Northeast and mid Atlantic. Some Southern states are experiencing the sharpest increases in cases and hospitalizations over this past week.
Steve Newmark 04:24
An epidemiology professor at the University of North Carolina, Justin Lessler said if it’s not surging in your area, it likely will and likely very soon. It’s coming and it’s coming fast.
Zoe Rothblatt 04:34
Oh, okay. Well, now that we’ve got that scary quote. As health advocates, Steven, what should we be doing?
Steve Newmark 04:43
This is a rough time, no doubt about it. A caveat, of course, is that we are not doctors. We are not an epidemiologist. We are not virologists. In all seriousness, we’re two semi competent public health professionals. We read and digest inordinate amounts of information on COVID. We’ve each studied past pandemics and our backgrounds allow us to have a decent understanding of what it is we are reading. Hopefully we can digest the information properly for our audience and give some helpful advice.
Zoe Rothblatt 05:09
And of course, we provide our thoughts through the lens of how this affects the chronically ill community, particularly folks who are immunocompromised like myself. I’m also coming from a personal place when we talk about this. And we know our community is very worried right now. We’ve heard it anecdotally and in our recent COVID-19 Patient Support Program Quick Poll, we had asked how worried people are about this specific variant Omicron and 80% had reported that they’re moderately to very worried.
Steve Newmark 05:37
Wow. 80% I think one abject failure during this pandemic has been a lack of focus on folks with chronic conditions. I saw a comedian joke the other day about the phrase comorbidities and COVID. He said, basically, they mean fat people.
Zoe Rothblatt 05:50
Oye, you know, there’s so much more to it than that. And no doubt obesity is an aggravating factor with COVID. But there really has not been attention paid to our community compared to how much else is about COVID, we’re really left behind.
Steve Newmark 06:04
It still boggles my mind that someone won’t do the simplest selfless act of wearing a mask while shopping for groceries. There are elderly folks and others with who knows what conditions in that store. If for nothing else, just wear the mask to make folks freak out a little bit less.
Zoe Rothblatt 06:19
Totally going back to our poll that I mentioned, another question we asked was about what would help people feel more comfortable. And the two most important factors were other people getting boosters, or third doses, and indoor masks mandates both at 86% wanting these to feel more comfortable.
Steve Newmark 06:36
Mm hmm. I definitely feel comfortable and people are wearing the masks, even if it’s under their nose. It’s like alright, well, at least the person is doing something at this point. I can’t abide by the no masking at all. It’s like come on, well, what point you’re trying to prove here with no mask at all in the midst of omachron. Anyway, you mentioned boosters, and boosters continue to be a big conversation in this country and around the world. Just recently, the FDA authorized the first COVID booster shot for teens 12 to 15. This is for the Pfizer shot and it has to be given at least five months after the initial shots.
Zoe Rothblatt 07:07
The FDA made this decision after reviewing the real world data from Israel that showed there were no new safety concerns in expanding boosters to these ages. And the FDA also authorized a third dose as part of the primary series. So you know those first two shots plus this one for certain immunocompromised children ages five to 11, which is consistent with what’s been recommended for adults. So you know, more people are becoming eligible for boosters and additional protection every day.
Steve Newmark 07:38
Yeah, looking at the numbers here in the U.S., overall about 68 million people are fully vaccinated and boosted. Looking at who’s eligible for a booster that’s nearly 180 million people. So the numbers are promising. And as we see booster eligibility expand, we should see these numbers go up.
Zoe Rothblatt 07:54
And other interesting news about these additional shots that’s relevant to our community is this conversation of the fourth shot. So Israel is going to give out a fourth shot, they announced that they’ll be offering this to people aged 60 and over, people with weakened immune system and residents and staff of nursing homes.
Steve Newmark 07:54
And here in the U.S., it looks like immunocompromised individuals will be eligible for a fourth shot soon according to CDC guidance, which means that our community if they got a dose in August would become eligible in February for the fourth shot.
Zoe Rothblatt 08:26
Of course, people should talk to their doctors about this fourth shot and if they should get it but I do think that this will bring a sense of relief to our community. We’ve heard from immunocompromised people about seeking out fourth or fifth shots because they amounted little to no response for the first few doses. And we’re just scared with Omicron spreading so rapidly and Delta too, other variants that we’ve seen, and they’re just desperate not even to get an extra immunity but to get that initial level of immunity.
Steve Newmark 08:54
The bottom line, a fourth shot is coming soon. Talk to your doctor about whether this is the right thing for you. Ultimately, we’re at another difficult phase of the pandemic. I personally remain hopeful that this could be the last major wave. If Omicron rips through the unvaccinated community and hopefully remains mild and confers some level of immunity, it could lead to the herd immunity that we have been hoping for all along. Then vaccines can fill in the holes and we will be left with an endemic case of COVID-19 similar to the flu.
Zoe Rothblatt 09:23
One can certainly hope especially hope that the case has remained mild. I think that’s really you know what’s scary here is severe infection especially for our community.
Steve Newmark 09:33
My personal advice for this phase is to focus on the mental health aspect. If you are immunocompromised, it is a very scary time we saw those numbers, the 80% are worried. Do what you need to do to help yourself mentally. Everyone has their own ways of coping. There’s meditation, perhaps reading the news a little bit less.
Zoe Rothblatt 09:49
Yeah, but on that news front definitely listen to The Health Advocates.
Steve Newmark 09:53
Obviously listen to us, of course.
Zoe Rothblatt 09:55
Of course and my advice is to keep doing what makes you feel safe. I got mask shamed recently. And I felt really uncomfortable and was like, Oh, should I take it off and then I thought, You know what I’d rather feel uncomfortable and safe. Because if I take my mask off, I’ll probably still feel uncomfortable and then also feel unsafe. So you know, just do what you need to do and and know that you have a supportive community here with us.
Steve Newmark 10:19
Hold on. Wait a minute, you got mask shame?
Zoe Rothblatt 10:21
Yeah, it was scary. To be honest, I was so caught off guard, because I guess we’re almost two years into this. And it hadn’t happened to me.
Steve Newmark 10:30
Wow.
Zoe Rothblatt 10:31
So I was at the hair salon, I finally was brave enough to go and they checked vaccine status at the door. So I thought Great, I’ll be amongst vaccinated and people were still in a mask. They wash your hair before they do the haircut. And I just tucked the ear loops over my mask so I could still have it on but it wouldn’t get soaking wet. And then the person washing my hair started saying I’ve vaccinated, your vaccine. Why do you need it? I just was like, I’m immunocompromised. And it was really overwhelming.
Steve Newmark 10:59
Oh my gosh, I mean, I’ll just say over the holidays, I was at my in laws in Pennsylvania. It just shocked me being at the supermarket and to see people without a mask at all. That’s why I was joking before about the people with the masks down by the nose is like alright, at least at least they’re sort of acknowledging that there is a pandemic still going on. But the folks that didn’t have any mask whatsoever, I’m just like, What is your deal? What is your deal? Are you trying to make a point? Or are you so selfish, this is a supermarket, there are elderly people walking around, I see them. There are probably people that have underlying conditions that you won’t know about because you can’t see those underlying conditions. You have people just don’t think about others.
Zoe Rothblatt 11:00
True. I was walking into my apartment and another person was walking in and my apartment has a mask policy, you must wear a mask and the doorman politely said, Could you please put a mask on and then the guy said, everyone I know has COVID. I’ll just get it when I get it. If it’s my time to go, it’s my time to go. Why do we even need this and I was standing right there being like you have no idea that you think this is a young healthy group here, but it’s not and people are living with serious conditions.
Steve Newmark 12:10
There’s an excess of selfishness. Two anecdotal stories. The first is we’ve talked about this on the podcast, there’s a level of anger out in society, we’ve been hunkered down and living this abnormal life for so long. I saw something that was so disturbing. I saw on the street in New York City. An elderly man was parked and was trying to get out and long story short, a yellow bus was sort of double parked, it would not move for him. And the guy’s like, I just want to get out like just can you just back up so I can get out and the bus driver, there were there were no kids in the bus, just went ballistic. And she started cursing at this man.
Zoe Rothblatt 12:42
Sounds like New York.
Steve Newmark 12:44
It sort of does. She was cursing. And let’s just say she put up two of her fingers. I won’t say which two. So there’s this, you know, this crazy level of anger. And then part about folks not wearing the mask at all. I came across what I thought was a good opinion piece in The Philadelphia Inquirer. The author was talking about a trial in Harrisburg, Pennsylvania, where a local group was trying to get more funding for rural education, specifically seeking funding for science for high school curriculum. And a state senator asked in the midst of the trial, what purpose does taking biology have for someone who’s going to become a plumber. And I read that and I thought the idea that our education system is like a trade school from kindergarten through 12th grade is just an anomaly to me. I remember my seventh grade English teacher taught us that the reason we have free public education in this country is because everyone is allowed to vote over the age of 18. When you hit the age of 18, you have to vote and you want people who are educated. I don’t remember much from biology to be frank or chemistry or physics, but I took them all. And it provides a basis for gaining respect of what science is. It provides you a learning of what the scientific method is. It provides you the basics to understand what facts are and how facts develop and how they are actually facts and the difference between a fact and something that’s false. And when you have an education system that doesn’t accentuate these things after decades, you’re left with a society that doesn’t know how to tell the difference between what is fact and what is not fact and the idea of wearing a mask is is not necessary perhaps. And you know, I’ve heard things in the last week or two, Well the vaccines don’t work, Omicron shows that the vaccines don’t do anything, you can get past the vaccines.
Zoe Rothblatt 14:29
Everyone is their own unique scientist these days, just like they are politicians.
Steve Newmark 14:35
Yeah.
Zoe Rothblatt 14:36
It’s true, like you can’t reduce a subject just to its basic contents. It expands your mind in different ways you know, doing a math problem is very different than writing and gaining those skills really matter especially when when you want to go have conversations like this. I was walking by and I heard this guy say you know, Delta and Omicron, what’s the next one going to be Megatron? Where are they even getting these names from? You know, it just highlights the importance of learning the Greek alphabet to understand where things come from? Yeah, I mean, we need to keep learning, we need to keep discussing and putting out content like this.
Steve Newmark 15:11
With that I feel like one Public Service Announcement, if you’re gonna be out there, one tool we have that we didn’t have in March of 2020, we have access to better quality masks that are more helpful. The N95 masks are fully available now. And they’re pretty affordable. They’re between one and $2. So I would, you know, strongly suggest investing in an N95, or a KF95. The KF95s are high quality as well. The problem with the KN95s are there’s a lot of counterfeit KN95 masks out there. But the one thing that we do know is a single cloth mask and a single surgical mask is not enough anymore.
Zoe Rothblatt 15:47
Yeah, I actually felt the difference. I’ve been wearing an N95 or KN, one of the versions of it. And last night, it was freezing, like let me put on my class mask, it’ll be more comfortable in this 30 degree weather. And I was like, I can breathe way too easily. I’m feeling a lot of stuff come in that I haven’t been feeling. So you know, it really does make a difference to have on that better mask. You know, I keep reminding myself I’m doing all I can to stay safe. And I’m using all the tools we have in our kit. And you know, just try to keep living and enjoying as best I can. Steven, what did you learn about today, our first episode back, season three.
Steve Newmark 16:22
I think I learned that through it all, it’ll be okay. We’ve got to address the mental issues. That’s a big part of it. And it’s okay to be worried that’s a normal reaction. But let’s keep it in perspective.
Zoe Rothblatt 16:33
And I learned about the difference between the the 95 masks, I didn’t know what you know, N95, K95 I kind of just took it for what it is, so thank you for that.
Steve Newmark 16:42
No problem. We hope you learned something too. We’d love to hear from you about what you’re dealing with in this latest phase of the pandemic. Send your email to The Health Advocates at GHLF dot org. Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:56
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 17:04
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 17:09
Well, everyone thank you for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a five star rating and write a positive review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 17:29
I’m Steven Newmark. We’ll see you next time.
Narrator 17:34
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Catch up on season two with Steven and Zoe.
Season 2, Episode 12: Omicron: What Would George Carlin Say?
The rise in Omicron has put added stress on doctors and nurses, as well as on our emotions as we weigh whether to change holiday plans. New restrictions are in place, people are double-masking, boosters lag behind, and at-home COVID tests are hard to find. The uncertainty in how we should respond to Omicron reminds one of our hosts of a famous George Carlin joke, bouncing emotions between an idiot and a maniac.
“If I’m double masked, and I see someone wearing three masks, I’m like that person’s crazy. That person’s a lunatic. But if I see someone with only one mask or not masked, of course, I’m like, what an idiot, that person’s an idiot,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S2, Ep 12: Omicron: What Would George Carlin Say?
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steve Newmark 00:08
It reminds me of an old George Carlin joke.
George Carlin 00:11
Have you ever noticed when you’re driving that anyone who’s driving slower than you is an idiot and anyone driving faster than you is a maniac.
Steve Newmark 00:20
And that’s how I feel about everyone with COVID. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:35
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve Newmark 00:40
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:47
Alright, let’s get started as we always do with a listener comment. Are you ready, Steven?
Steve Newmark 00:51
I’m ready hope for another ego boost for us.
Zoe Rothblatt 00:54
I think so. This one is from Basemomics. And they wrote, this will help me have a better understanding of all the healthcare news constantly coming out.
Steve Newmark 01:02
Great. Well, that’s our goal is to help folks understand healthcare news, and particularly to put it in a lens for our patient population who tends to be chronically ill and immunocompromised.
Zoe Rothblatt 01:13
For sure. Well, Basemomics thanks for your review. And we invite all of our listeners to go to Apple Podcasts to leave an honest five star rating and a positive review.
Steve Newmark 01:23
So let’s jump in.
Zoe Rothblatt 01:25
Okay, I’m ready.
Steve Newmark 01:26
It is Christmas time. And all the talk is on Omicron. And how it’s affecting holiday plans.
Zoe Rothblatt 01:33
I know it feels like the most wonderful time of the year has got a little less wonderful.
Andy Williams 01:38
It’s the most wonderful time of the year.
Steve Newmark 01:42
Omicron, as you recall, was first mentioned on Thanksgiving Day, we first found out about it and is now the dominant COVID strain in the US making up over 70% of new infections. And the new estimate probably underscores just how rapidly it is spreading across the United States. Get this Zoe, just last week, the Omicron variant was detected in only 12% of COVID cases.
Zoe Rothblatt 02:03
Wow. You know, sometimes when you hear data, it’s like not coinciding with what’s happening in real life. But I’m definitely feeling like that data is ringing true, especially here in New York City. I know a bunch of people with COVID. Right now even folks who are fully vaccinated and boosted. It’s for sure getting scary out there, especially for someone who’s immunocompromised. Feels very March 2020 when things were happening so fast, cases were popping up everywhere. Some restrictions are coming back, tests are being hoarded and it’s a challenge to get access to one.
Steve Newmark 02:36
First off the testing. So that’s a big difference between March of 2020. Of course, we have tests, we have vaccines that provide a barrier. We’re using masks unlike in March of 2020, when there was a bit of a shortage of masks and we were unsure about using the masks, whether it would be helpful at all. So we have more preventive measures to know what we’re doing. Hospitals are better prepared when cases come in, of course. So thankfully, we’re not in the March 2020 situation although it does feel like that.
Zoe Rothblatt 03:02
That’s true. That’s a good reminder. Thanks, Steven.
Steve Newmark 03:05
When it comes to restrictions however, because of the uptick of cases, we are seeing a rise in restrictions on gatherings, especially as the holiday nears. Here in New York City, much of Broadway has shut down after just reopening in September. Over in Europe, the Netherlands has introduced a strict new lockdown that allows a maximum of two guests at any indoor gathering apart from Christmas and New Year’s when only four guests will be allowed.
Zoe Rothblatt 03:27
Wow.
Steve Newmark 03:27
France has announced that big outdoor gatherings will be banned on New Year’s Eve and Germany and the UK haven’t announced restrictions but did say that actions need to be taken to reduce the spread.
Zoe Rothblatt 03:37
And I heard the head of the World Health Organization is urging people to postpone holiday gathering, he said an event canceled is better than a life canceled.
Dr Tedros Adhanom Ghebreyesus 03:46
All of us want to spend time with friends and family. But an event canceled is better than a life canceled.
Zoe Rothblatt 03:55
You know really stark quote.
Dr Tedros Adhanom Ghebreyesus 03:57
It’s better to cancel now and celebrate later than to celebrate now and grieve later.
Zoe Rothblatt 04:04
It’s really what our immunocompromised community has been saying and trying to get across this whole time. It’s scary out there. I’m feeling nervous about a post-holiday surge even given some of these restrictions. They’re not really happening in the U.S. so we’ll see what happens in the coming weeks.
Steve Newmark 04:19
In the United States, everyone’s flying around the country now interacting with friends and family. We know probably folks in our community are taking more precautions in the sense that they’re testing before gatherings probably at greater rates than the general public but even with all of that it’s going to be a scary time. But given all this, how are you celebrating the holidays this year?
Zoe Rothblatt 04:37
That’s a great question. Luckily, Hannukah came early this year before Omicron hit so I was able to gather with some family and friends for that. But now thinking about New Year’s Eve, I was supposed to go out to dinner and we’re just going have a night in and order in. I’m sure Mackintosh the dog will be happy to have us home. It definitely feels like the right thing to do, to stay in?
Steve Newmark 05:01
Oh yeah.
Zoe Rothblatt 05:01
How about you?
Steve Newmark 05:02
I’m going to go to a cabin in the woods and dig a hole and dig a moat around, not let anybody come find us. But for real, I’m gathering with some family here and there. I actually have already departed. We tested before we came down to visit my family, and we were negative. Coming from New York City, I was actually surprised. It was the first time I took a test and I thought there’s a 50/50 chance that I have it, just because you must know folks who have tested positive that are asymptomatic.
Zoe Rothblatt 05:27
Yeah. So I actually have a crazy story. I was going over to my friend’s the other night and we said, okay, let’s just be safe and do an at-home test before we see each other. And while I was walking there, her’s tested positive.
Steve Newmark 05:38
Wow.
Zoe Rothblatt 05:39
And she’s totally asymptomatic. That was a few days ago. She feels okay, she’s fully vaccinated. She’s boosted but obviously is quarantining now because she has COVID. And I’m really grateful for these at-home tests because it avoided me getting exposed. It’s no joke here.
Steve Newmark 05:53
No, absolutely. I know of give or take like a dozen folks that I’m connected to and to a person they were either all asymptomatic or had what they would call mild cold-like, not even flu-like symptoms, maybe a sniffle here and there. And these were all children who tended to fare better against the infection and adults who have all been boosted. I guess that’s some good news we could take so far.
Zoe Rothblatt 06:14
You know, I guess there’s always some bad news when it comes with the good news is that I tried to get my hands on a rapid at-home test after this happened. And it’s nearly impossible. Everywhere is out of stock here in New York. I looked online, and I was able to order some from Amazon, who knows if they’ll come, for a reasonable price. I also saw some listed for like $400, $1,000.
Steve Newmark 06:36
Oh dear.
Zoe Rothblatt 06:37
There’s people out there, you know, really abusing this.
Steve Newmark 06:40
We don’t even know if they’re real.
Zoe Rothblatt 06:41
Yeah, I know.
Steve Newmark 06:42
E-bay?
Zoe Rothblatt 06:43
No, actually, I saw at like some common large chain stores that this was happening. And I was just shocked.
Steve Newmark 06:48
Wow.
Zoe Rothblatt 06:49
And that feels very March 2020 to me, when we saw this happening with the masks.
Steve Newmark 06:53
Yeah.
Zoe Rothblatt 06:54
That they were just going for crazy rates.
Steve Newmark 06:56
It’s really unfortunate that in our country, we just cannot get tested to the capacity that it really needs to be. It should be simple to take a test in the comfort of your own home, as you know, you’ve done it, I’ve done it, it’s very simple to do. It takes 15 minutes. I don’t mean this in a glib way at all but it’s like a pregnancy test. You look for a line and it tells you whether they’re positive or negative. And it’s very simple. And we shouldn’t have to run out and wait on a line and risk further infecting others just to get a test.
Zoe Rothblatt 07:24
And also now like all the urgent cares are full of people seeking COVID test.
Steve Newmark 07:28
Right.
Zoe Rothblatt 07:29
If you just have like a regular cold or maybe flu and want to get checked out by a doctor, it’s kind of hard.
Steve Newmark 07:35
Absolutely. I broke my leg a few months ago and my wife said, well, why don’t you go to urgent care, and I said, urgent care, it’s like it’s COVID care, there’s no urgent care anymore. You have to go to the emergency room for everything nowadays. But that’s how it is.
Zoe Rothblatt 07:47
I know. I’m on City MD’s listserv, the urgent care here in New York. And I got an email from them last night saying that they’re shutting down a few locations today to try to avoid further closures later on, when it’s getting worse, like after the holidays. People are overwhelmed. Physicians are overwhelmed. I think we need to do better on that front. I don’t have the answers but hopefully we can get more testing.
Steve Newmark 08:11
The good news is that the federal government is addressing this challenge. The Biden Administration plans to expand testing sites across the country, distribute 500 million free at-home tests and deploy emergency medical teams to support strained hospitals.
Zoe Rothblatt 08:24
Yeah, and it seems like the focus here won’t be on locking down again, but rather supporting these types of mitigation efforts and getting vaccinated. I heard you know, the mayor of New York said we’re not locking down. And I think that’s really the mindset here in the US just to avoid going back into sheltering at home and trying these mitigation efforts. I just wonder is 500 million tests enough? It sounds like a lot, but I really don’t know.
Steve Newmark 08:48
I’m kinda like you, I have a handful of tests that have accumulated. By the way, when I went online to get a test the other day to restock, I was only allowed to purchase one at a time. I have a family of four. I purchased it, but I feel like we got to be diligent about how we use them.
Zoe Rothblatt 09:02
Which is unfortunate because we should be able to test like, I don’t know, twice a week.
Steve Newmark 09:06
Right.
Zoe Rothblatt 09:07
And it’s a bad situation when you’re being really restrictive about testing and maybe only waiting till it’s like past the point where you should have tested and as a public health person, I just wonder how many people aren’t accessing these tests and walking around and spreading COVID more.
Steve Newmark 09:22
Well, we do have another tool in our kit and it’s one specifically for immunocompromised people. Just recently, the US Food and Drug Administration issued emergency use authorization for a monoclonal antibody drug to prevent COVID infection.
Zoe Rothblatt 09:36
I heard that news to very exciting. So this is a medication that’s taken before you have any exposure to COVID whatsoever.
Steve Newmark 09:44
Right.
Zoe Rothblatt 09:45
It’s a long acting preventative meant to help bolster your immune system should you be exposed down the road and this is specifically meant for people who are immunocompromised.
Steve Newmark 09:56
So this should hopefully bring some comfort to people in our community who may not have garnered a full response to the vaccine.
Zoe Rothblatt 10:02
Yeah, I’m excited to hear we’ll definitely keep our listeners updated if we hear of anyone taking this and how it goes for them, but this is a huge win for our immunocompromised community.
Steve Newmark 10:13
Zoe, I’m just curious, do you know this drug, I know it’s new, but as it boosts your immune system, does it have benefits beyond COVID?
Zoe Rothblatt 10:20
That’s a really good question. I have no idea.
Steve Newmark 10:23
Okay.
Zoe Rothblatt 10:24
But I’m curious to learn.
Steve Newmark 10:25
Stay tuned. Stay tuned.
Zoe Rothblatt 10:27
Even if this doesn’t, I’m sure now that they have the science and the technology they could maybe invent another medication like this for different illnesses.
Steve Newmark 10:36
I am staying safe. I’m trying to stay sane more importantly than staying safe. I think I’ve read way too many articles about the dangers of Omicron and its spreadability, if you will. It reminds me of an old George Carlin joke.
George Carlin 10:49
Have you ever noticed when you’re driving that anyone who’s driving slower than you is an idiot and anyone driving faster than you is a maniac. Say, look at this idiot here. Will you just look at this idiot just creeping along? Oh, look at that maniac go.
Steve Newmark 11:07
And that’s how I feel about everyone with COVID. If I’m double masked, and I see someone wearing three masks, I’m like that person’s crazy. That person’s a lunatic. But if I see someone with only one mask or not masked, of course, I’m like, what an idiot, that person’s an idiot.
Zoe Rothblatt 11:21
Yeah, I relate to that for sure. Speaking of double masking, I’ve gone back to double masking, I’ve ordered some N-95s. And I’m trying to get my hands on tests, that’s how I’m staying safe.
Steve Newmark 11:32
Actually, that is a really big deal in terms of items that can be actually helpful from us non experts over here. One major difference between now and the early days is the type of mask you wear does make a difference. Early on, there was such an emphasis on the masks being helpful for those around you and not necessarily for yourself. But the truth of the matter is the right mask can actually protect you very well. You know, there’s a reason when you go to a hospital pre pandemic I’m talking about, doctors wore masks, they weren’t doing it to protect you necessarily. They were trying to protect themselves. And as we know, the top mask out there is the N-95. Cloth masks, which may look good don’t necessarily provide much of a protection. If you’re going to be wearing a cloth mask, you really should be double masked at minimum. Same thing with the surgical masks, disposable surgical masks, but I think it’s time to double mask or go to a K-95, KN-95 mask or even better an N-95 which provides the most robust protection. With that and the vaccines, there is a layer of armor that you have.
Zoe Rothblatt 12:32
I think people are agreeing with you, with us. I’ve noticed that everyone that I’m seeing inside at the supermarket or whatever is in a mask and outside I would say about like 60% of people are wearing masks just by looking around whereas a week ago, no one was wearing a mask outside. So the landscape is changing and here New York City people are gearing up with protection. So Steven, before we get up, I think we’re due for an update on Build Back Better. A few episodes we talked about the drug pricing provisions, what’s happening with this bill?
Steve Newmark 13:08
As we end December and 2021., it looks like Build Back Better may have been given the final deathblow. This bill passed the House last month and we left it off with the Senate and this was a bill, this is President Biden’s, I’ll call it his big social policy bill and it looks like it’s going to go down. Senator Joe Manchin announced recently that he would not support the current version of the legislation, essentially halting its path to the Senate. And his vote is necessary because Democrats don’t have a majority in the Senate. They have 50 votes with the Vice President serving as a tiebreaker. So we’ll see where it goes. But it looks to be as of now on its deathbed. We shall see in the new year what happens.
Zoe Rothblatt 13:44
Steven, we’re coming up on the close of our show where I’m gonna ask what you learned about today.
Steve Newmark 13:49
I just learned in our discussion how it’s a tough time with yet another variant out there. But ultimately, I think I’m more worried about my mental sanity, if you will, than my actual health. I know that we can get through it. I know we have the tools. There are therapies. There are vaccines. There are masks, but my mental sanity is not necessarily on par with the reality.
Zoe Rothblatt 14:10
Yeah, I agree. I kind of learned that it’s really helpful to talk this stuff out and be in the shared experience together and talk about what we’re doing, what we’re thinking. It helps and I hope it helps our listeners to join this conversation with us and listen in.
Steve Newmark 14:24
Well, we hope you learned something to you. We’d love to hear from you about what’s going on with Omicron, about your holiday plans or just an end of the year wrap up. Send your email to The Health Advocates at GHLF dot org. Or better yet, include a short video or audio clip.
Zoe Rothblatt 14:39
And who knows whatever you share, maybe included in our listener feedback portion of future episodes.
Steve Newmark 14:46
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 14:51
Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 15:09
I’m Steven Newmark. We’ll see you next time.
15:14
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 11: Omicron: Are We Going Backward?
Pandemics historically end after two to three years, but with the emerging Omicron variant, the question remains: Are we coming out of the pandemic or going backward? And how will we know when we cross the finish line and the pandemic is over?
“There’s never going to be a bright line that we cross but there’ll be a moment when hospitalizations are down, when we have the therapeutics to help us if we do get sick, similar with the flu and hopefully the strains will become less and less virulent,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S2, Ep 11: Omicron: Are We Going Backwards?
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steve Newmark 00:08
There’s never going to be a bright line that we cross but there’ll be a moment when hospitalizations are down, when we have the therapeutics to help us if we do get sick, similar with the flu and hopefully the strains will become less and less virulent. Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:32
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve Newmark 00:37
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions and to live your best life.
Zoe Rothblatt 00:44
Okay, Steven, let’s start as we always do with a listener comment. Are you ready?
Steve Newmark 00:48
I’m ready.
Zoe Rothblatt 00:49
Okay, this one is from DBNYLA and it definitely boosted my ego a bit, they wrote best podcast on the market.
Steve Newmark 00:57
That might be a relative of mine writing in.
Zoe Rothblatt 00:59
It counts.
Steve Newmark 01:01
But it’s very much appreciate it, best podcast on the market. You know we do we can. I like how it boosted your ego. Now, we need everyone to get boosted for real.
Zoe Rothblatt 01:09
Oh, good point. Thank you for your review. And we invite all our listeners to go to Apple Podcasts to leave an honest five star rating and positive review.
Steve Newmark 01:19
So Zoe, a few episodes back, we talked about living with a pandemic instead of moving past it. But you can’t help think, when will this end?
Zoe Rothblatt 01:27
I know it feels like it’s dragging on and on and not in the same way. Maybe things are potentially getting worse.
Steve Newmark 01:34
Yeah, we have a new variant Omicron, which has multiple mutations that could increase transmissibility and risk of infection. Researchers are still unsure about how dangerous this variant is and to what degree vaccines will be effective against it.
Zoe Rothblatt 01:47
And given this rise in the Omicron variant, we’re definitely seeing a rise in restrictions again. A few states have reimposed indoor mask mandates. As of our recording, it’s New York where we live, Washington, Oregon, Illinois, New Mexico, Nevada, and Hawaii. I was wondering how I guess legitimate are these, are people going to follow and I actually got an email from my apartment building saying all are required to wear masks, regardless of vaccine status. So we’re really seeing this rollout.
Steve Newmark 02:16
It begs the question, are we going backwards? Or is this what life is like with a pandemic? Could the variant send us back indoors again?
Zoe Rothblatt 02:24
So far, our vaccines held up against these mutations and variants. So I would say maybe we’re not going backwards per se. But my question is, are we going forward?
Steve Newmark 02:35
So to add to that question, how do we know when the pandemic is over? If deaths and hospitalizations eventually reach levels usually associated with the flu, would that be a reasonable benchmark for saying the pandemic is over?
Zoe Rothblatt 02:47
Okay, the flu. I’m glad you brought that up. Let’s talk about that for a minute. Perhaps the most famous pandemic is the 1918 Spanish Influenza.
Steve Newmark 02:57
THE, that’s the flu that started at all.
Zoe Rothblatt 02:59
And it’s considered one of the most deadly of all time.
Steve Newmark 03:03
The Spanish flu was a form of avian flu, originating in birds and like COVID had a few waves. The first wave was mild and the second was extremely deadly. The spread was exaserbated by travel due to World War I.
Zoe Rothblatt 03:15
And many of the public health measures used today were used then like masking and social distancing and from records kept from the US Centers for Disease Control and Prevention, CDC, we know that hospitals were overwhelmed and businesses were shut down, morgues were overrun, similar to what we were seeing in 2020 when COVID first hit.
Steve Newmark 03:35
So where did it go? By 1920 after the third wave, the pandemic had ended as a result of public health measures and herd immunity that was achieved because of the amount of infection in the community. And the answer to where it did go goes a step further. It didn’t disappear. It just continued to mutate into a less virulent strain and a version of it continues to circulate to this day.
Zoe Rothblatt 03:55
And you know, the flu is of course, a big threat each year. We do get vaccinated but not in the same way that pandemic is, it’s come to manageable levels. And that’s actually what typically happens with pandemic viruses. They mutate and evolve into this endemic disease, which means that it just is in the population, circulates at these lower levels each season. And some were hoping that this would be the case with COVID.
Steve Newmark 04:18
Right? Over the course of this COVID pandemic, we’ve heard comparisons to 1918, which is hard not to do, though 2020, of course is nothing like 1918. We have vaccines, we have regular global travel, an immense amount of data and scientific therapeutics that they didn’t have back in 1918. And this impacts the trajectory of the pandemic.
Zoe Rothblatt 04:37
That brings us back to our question, Will this pandemic end similarly and how does the time that we’re in impact this?
Steve Newmark 04:45
It’s tough to say. Historically most pandemics end roughly two to three years as the virus mutates into a less virulent pathogen and the population builds up immunity. Experts say that similar to 1918, the hope is that we will get new variants that don’t produce much of a clinical illness. And we don’t know just yet if that could be Omicron or other variants we have yet to meet.
Zoe Rothblatt 05:04
What I’m hearing is that the hope is that between the mutations, the less virulent strains, natural immunity and the population and, you know, vaccine induced immunity, we’ll eventually get out of this or get living with it.
Steve Newmark 05:18
I mean, I think so. I don’t know. But yes, I don’t think it’s hopeful, I think it’s realistic to say it will eventually be a part of our new normal given that if it’s generally accepted that COVID will be with us in some form. The question is, what level is an acceptable level? And who decides when we’ve crossed that line?
Zoe Rothblatt 05:36
I’d add on top of that, that a lot of people do feel like we’ve already crossed that line and have mostly returned to normal, you know, eating out going to large gatherings, not wearing a mask, not distancing, especially as we’re in the holiday season. And this has been really hard for people in our immunocompromised community who feel left behind in all this.
Steve Newmark 05:55
Absolutely. You mentioned here in New York, the mask mandates for indoors has returned. And, you know, I found myself in the last couple of days, walking around going into supermarkets. I was on the subway, and there were still people without the masks. What the hell man, they reinstituted the mandate, you know, no joking around anymore. We’ve got the Omicrons out here, put that mask on, of course I’m too much of a whimp to actually say anything to anyone.
Zoe Rothblatt 06:20
Especially on the New York City subway.
Steve Newmark 06:22
Yeah, right.
Zoe Rothblatt 06:23
There’s the unwritten rule. Just keep your eyes down.
Steve Newmark 06:25
No, it’s true. You don’t mess around with that, you deal with something much worse than Omicron. But in all seriousness, I walk around, I can’t believe being a member of a community, people have to wear masks. You know, we’re dealing with a large number of immunocompromised folks out there, we have the Omicron variant. Like, don’t you want to end this, like enough is enough. And you could say that some people think it’s normal. Yeah, I guess that’s true. But they have to look around and see that the vast majority are still wearing the masks and and are still infecting themselves as a result of this ongoing pandemic. So it is frustrating to see that not everyone, you know, feels a sense of community that we feel and certainly doesn’t feel sympathy towards those who are immunocompromised.
Zoe Rothblatt 07:01
I couldn’t agree more.
Steve Newmark 07:02
And when it comes to comparing it to the flu, the one thing I kept thinking early on, man, wouldn’t this world be a better place if we didn’t have the flu?
Zoe Rothblatt 07:10
Totally.
Steve Newmark 07:11
I mean, how many people die every year of the flu, how many people are sick, elderly folks who contract the flu, and have their lives. That’s it because of this virus that’s out there. And now for the rest of our lives, we’re gonna have two viruses every year that we have to deal with, we’ve got the flu. And now we’re going to have COVID, who needs that?
Zoe Rothblatt 07:27
But I will say it’s not as simple as comparing to the flu, because we’ve been seeing that COVID has waxed and waned, but it doesn’t have the same pattern that the flu does. The flu goes away in the summer and comes back in the cold season.
Steve Newmark 07:40
Right, just to bring it back to Omicron, I think that there’s a few things that based upon my amateur reading, and again, we’re not scientists, but you know, what we’re seeing is a few things. Omicron spreads far more rapidly than Delta. And it’s going to take over as the dominant strain. It’s coming fast, very fast. It reinfect those who have already been sick, and it breaks through to those who have been vaccinated, much more so than the Delta did. However, it does appear that vaccines do protect against severe disease, hospitalization and death. So that’s good, there is some protection afforded. It doesn’t stop the infection necessarily, but it can at least help folks from getting too sick. The cases on average, appear to be much more mild with Omicron. But I think that has to do with the fact that there are higher percentage of reinfections and breakthrough cases, which as I just mentioned, seem to be protected against severe disease.
Zoe Rothblatt 08:30
So you know, when do you think that the big peak of cases will be?
Steve Newmark 08:34
Good question. It’s coming. It seems to be sometime in early 2022. It could be January or February. There’s two things we can do. The first is, of course, to get boosted and get everyone you know, to get boosted. And I think as a society, we need to ramp up the production of therapeutics as rapidly as possible along with testing, because I think the goal at this point is mitigation, not prevention. And I think there’s going to be a period during that peak when there’s gonna be a lot of Omicron cases and the numbers gonna be very high. And I think you’re going to start to see some lockdowns in places that will allow it like parts of Europe, for example, where there’s a willingness to do it. In the United States, you may see things like school closures. Cornell University just closed its doors due to outbreaks, the NFL is having problems with outbreaks now. So you know, we’re starting to see it. And here’s the scariest part. If you’re immunocompromised, you really need to be sure you don’t get Omicron. So the price of success on that front is to be more paranoid than the average person and to really lock down hard while we ride this out. I know that’s very scary.
Zoe Rothblatt 09:34
Which is honestly what many people in our community have been doing, you know, they’ve still been isolating strictly. I do want to go back to something you mentioned about testing, which we did an episode on a few weeks ago. And it seems like I’ve noticed in New York City where I live, there’s a few sites that do testing and the lines have been, you know, down the block and around the corner and I’m wondering what you’re seeing, what our listeners are seeing and if people feel like they have access to these tests. It looks like there’s going to be a two hour wait for people to get tested, which I don’t know many people that could take two hours out of their day and stand in a line, especially if you’re immunocompromised and in chronic pain standing in a line outside in the cold is not pleasant.
Steve Newmark 10:14
Absolutely. I mean, the whole testing thing, it’s hard. I know the title of our show is The Health Advocates, but we don’t go too into the politics. But I think the testing in our country, at least it really has become you know, fiasco is a strong word. But it’s unfortunate to say the least, that we never got to the point where every citizen was mailed an at home test. The way it was set up by the federal government is such that you have to go purchase a test and then deal with the bureaucratic red tape of insurance to get reimbursed. And the tests are still not ubiquitous. They’re not everywhere still. So the at home testing, it’s not where it needs to be. It’s been pretty poor.
Zoe Rothblatt 10:46
And in the face of Omicron, I do hope that testing ramps up a bit.
Steve Newmark 10:51
Absolutely. Like we talked about for Thanksgiving, it’s the same with Christmas and New Year’s, you don’t want to be around folks who have not been tested if we’re going to be in close contact.
Zoe Rothblatt 10:59
So our big question going back to it, how do we know when we’ve crossed the line when the pandemic is coming to the close or turning into this point where we live with COVID the same way that we do with other viruses?
Steve Newmark 11:11
I don’t know. Maybe Dr. Fauci will come out and tell us that it’s over. But I think ultimately, the real answer is there is no party, there is not going to be an announcement, there’s never going to be a statement saying, hey, it’s over, everyone be cool. It’s going to come slowly. I think a lot of people thought we were almost at that point early in the summer and then Delta came, then I we were closing in on that point again, and late fall, perhaps and here we are with Omicron. There’s never going to be a bright line that we cross. But there’ll be a moment when hospitalizations are down, when we have the therapeutics to help us if we do get sick, similar with the flu, and hopefully the strains will become less and less virulent.
Zoe Rothblatt 11:49
So Steven, you know, we’re advocates. Our show is The Health Advocates, what can policymakers and advocates do to help us get to that point.
Steve Newmark 11:58
At this point, make sure everyone you know has been vaccinated and gets a boost. And I would say if you’re immunocompromised, keep talking to your friends and family about what that means and how the pandemic is different for you than it is for them.
Zoe Rothblatt 12:10
That’s a really good point. Sometimes it’s hard to keep advocating for yourself and trying to explain to people what’s going on. And that’s why we’re here and do what we do and have the podcast to try to get the word out and say there’s people living with serious conditions that are very afraid. So it helps if you put on your mask and distance and do things to protect each other.
Steve Newmark 12:30
Zoe, this brings us to I know your favorite part of the program. What did you learn today?
Zoe Rothblatt 12:33
Well, I learned that it’s not so simple to compare the 1918 pandemic to this COVID-19 pandemic, but it can give us hope to say that we’ll eventually be able to live with this relatively normally or in a new normal.
Steve Newmark 12:49
And I learned that there’s never going to be a bright line. It’s kind of sad, and we’re never going to get that party. But we will get through it two to three years, we will get through it.
Zoe Rothblatt 12:58
Amen to that.
Steve Newmark 13:00
Well, we hope you learned something to you. We’d love to hear from you about what you’re dealing with when it comes to Omicron or anything else. Send your email to The Health Advocates at GHLF dot org. Or better yet, include a short video or audio clip.
Zoe Rothblatt 13:13
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 13:21
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 13:25
Well everyone, thank you for listening to The Health Advocates a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 13:45
I’m Steven Newmark. We’ll see you next time.
Narrator 13:50
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 10: The Future of Drug Prices
There are many factors at play when addressing the cost of prescription drugs. A recent poll showing 83% of adults think the cost of prescription drugs is unreasonable. In this episode, we examine several proposals being considered by Congress.
“So complicated. It seems like this could have really big implications for drug pricing and it will be interesting to see how this plays out especially because so many in our community rely on drugs to live meaningfully and daily life with their conditions,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation.