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.
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.
S2, Ep 10 - The Future of Drug Prices
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
So complicated. So it seems like this could have really big implications for drug pricing. And it’ll be interesting to see how this plays out, especially because so many in our community rely on drugs to you know, live meaningfully in daily life with their conditions.
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. And I’m 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.
Zoe Rothblatt 00:47
So Steven, let’s start as we always do with a listener comment. Are you ready?
Steve Newmark 00:52
I’m ready.
Zoe Rothblatt 00:53
This one is from KF 0206. And they wrote, easy to listen to and informative as well.
Steve Newmark 01:00
Easy listening. Excellent. That’s what I aim for when I’m in my department store shopping. And when we’re doing our podcast, I like it. Thank you KF 0206.
Zoe Rothblatt 01:12
Thanks for your review. And we invite all of our listeners to go to Apple Podcasts and leave an honest five star rating and positive review.
Steve Newmark 01:20
Today, Zoe, I want to start by asking you and our listeners if you think the cost of prescription drugs is reasonable?
Zoe Rothblatt 01:26
Good question, easy answer for me, I would think honestly, no. When you have a chronic illness like I do, it’s a constant cost to get your prescription medications. You know, every month when I go to refill my medications I’m faced with co pays, this portion of the cost that I’m responsible for out of my own pocket. And, you know, I’m grateful for my health insurance, which definitely keeps the cost down for me, I’m not paying out of pocket entirely, but it’s expensive to be chronically ill.
Steve Newmark 01:53
Absolutely. I always say it’s almost like a double whammy, you have to deal with the illness itself. And then on top of that you’re getting hit with these bills that make it harder just to financially navigate.
Zoe Rothblatt 02:03
It’s so true.
Steve Newmark 02:04
And you know what, Zoe, you’re not alone. According to a recent Kaiser Family Foundation poll, the majority of Americans feel the same way as you. 83% of adults think that the cost of prescription drugs is unreasonable. And 26% say it’s very difficult for them to afford their prescriptions.
Zoe Rothblatt 02:20
You know, if 83% of adults think it’s unreasonable, what can we do about that?
Steve Newmark 02:25
One of the things that they’re trying to do in Congress, they’re putting together a package known as The Build Back Better Act. And we do have some updates on that and how it may relate to prescription drug prices.
Zoe Rothblatt 02:35
Right. And this time, I’ve been reading up and doing my homework. It certainly gets confusing, though. So Steven, I’m hoping that we’re gonna break it down together. And as always, of course, talk about the impact it has on our community.
Steve Newmark 02:48
Exactly what we do best as health advocates. So jumping right in The Build Back Better Act passed the House in November, and is now going through the Senate, where we expect it to undergo some changes. But there are some key provisions as it stands right now for drug pricing, six of them in fact.
Zoe Rothblatt 03:03
Six. Wow, that’s exciting. But it can also be confusing. So let’s take it from the top. As I understand it, one of the provisions is that for the first time, the federal government will be able to negotiate prices for some high cost drugs covered under Medicare, which is a federal insurance program for those over age 65 or those who are disabled.
Steve Newmark 03:25
Right. This provision would allow the federal government to negotiate drug prices directly with drug companies for a small number of high cost drugs covered under Medicare’s Part D and Part B, and this would happen from 2025 through 2028.
Zoe Rothblatt 03:39
You know, this is important for our community because top spending brands and biologics without generics or biosimilars would qualify for this. And also all insulin products, too. So when you think about people in our community, many are taking these kinds of medications, so to be able to negotiate could be helpful. The caveat is that it isn’t for recent drugs, it has to be some time since it had Food and Drug Administration, the FDA approval. So for small molecule medicines, it would be nine plus years since approval and biologics 13 plus years. So we’re talking about medicines that have been around for quite some time.
Steve Newmark 04:17
And for drug companies who don’t comply with the negotiations price, there would be a fine.
Zoe Rothblatt 04:22
So what does this negotiation actually mean for patients?
Steve Newmark 04:27
That’s a good question. We like to say that the price of a drug is really the price that a patient pays for the drug. And that’s what matters to us and to those that we fight for. These negotiated prices are supposed to help lower premiums, the price that you pay monthly for your drug plan, as well as out of pocket drug costs. But for the person on Medicare to see these changes, it really does depend on how many and which drugs are subject to the negotiations process.
Zoe Rothblatt 04:50
So confusing.
Steve Newmark 04:51
Indeed, Democrats and some Republicans have long championed the idea that Medicare should negotiate directly with manufacturers for discounts on prescription drugs. Medicare is explicitly prohibited from doing so under current law however. While this may seem illogical the prohibition exists because Medicare would not have the leverage to obtain discounts in a traditional negotiation and the Medicare Part D program, plan sponsors negotiate with manufacturers for discounts in exchange for formulary placement and beneficiaries can pick between dozens of plans to find a formulary that meets their specific needs. So in other words, when you go out and figure out which plan you want to purchase, in Medicare Part D, you look to see which of your drugs are covered compared to the overall cost of those plans. Since Medicare itself has no drug beneficiaries, and does not restrict access to a limited subset of the drugs, the program has no leverage to negotiate additional discounts. Similarly, in Part B, drug discounts can only be negotiated if Medicare were to restrict access to certain drugs to incentivize price cuts. Restricting access to treatments has long been a political impossibility, making negotiation something of a fool’s errand potentially worse for patients is that the Congressional Budget Office estimates that the drug pricing reforms will result in 10 fewer drugs entering the market over the next 30 years. I guess we each have to hope that these new drugs are not the ones that we would have needed.
Zoe Rothblatt 06:10
It seems like there’s some good and some not so good stuff for patients. And I’m really glad we’re breaking this down together. Because you know, we do this for a living. And it’s still pretty confusing. When we’re talking about in hypotheticals, it’s even more confusing than what we’re seeing in the real world.
Steve Newmark 06:25
Sure.
Zoe Rothblatt 06:26
Moving on to the next provision, so we’re at number two, we have that drug companies will have to pay a rebate if drug prices rise faster than inflation. And this is for Medicare and private insurance. So Steven, what is going on here?
Steve Newmark 06:43
So this one starting with this year 2021, as the base for measuring changes. If the price for a single source drugs and biologics covered under Part B, and nearly all the Part D drugs increase faster than the rate of inflation, then drug manufacturers would have to pay the federal government.
Zoe Rothblatt 06:59
And where would that money go to?
Steve Newmark 07:02
The money goes into a Medicare supplementary medical insurance fund.
Zoe Rothblatt 07:06
I see. And let me guess this impacts patients by once again putting pressure to limit drug spending, so our premiums and out of pocket spending can go down.
Steve Newmark 07:16
That’s the idea. Yes. But it also could have an impact on research and development for drug companies leading to less innovation in the marketplace.
Zoe Rothblatt 07:24
Right. So we really have to weigh that scale and get some balance going.
Steve Newmark 07:28
Yeah. All right. Let’s move on. Next one, the next provision also tackles out of pocket spending for Medicare. This one adds a $2,000 cap on all Medicare Part D out of pocket spending.
Zoe Rothblatt 07:40
$2,000, in my mind is still a lot to have to pay for health. But I guess we’ll take what we can get, you know, it’s good to have some cap.
Steve Newmark 07:48
Indeed, it’s good to have a cap and you won’t have to pay the $2,000 all at once. It allows for beneficiaries to spread the cost out over the year.
Zoe Rothblatt 07:56
Okay, that certainly helps.
Steve Newmark 07:57
Yeah. And speaking of caps, The bill also includes a cap for insulin so that monthly co pays cannot exceed $35.
Zoe Rothblatt 08:04
That’s huge, because I’ve heard that insulin can be 300 to $400 a month.
Steve Newmark 08:10
Yeah.
Zoe Rothblatt 08:10
And if I’m doing some fast math here, keep in mind, I’m not a mathematician. If it’s $35 a month, that means that most in a calendar year, it’ll be $420, which is a huge improvement from spending that much per month. And this bill brings down the cost of insulin back in line with what the original creators had intended. When they created the first type of synthetic insulin, they sold the patent for $1 in hopes that the drug companies would have no reason to charge high fees. Flashforward 100 years, quite the opposite has occurred. So this part of the bill will arguably have the biggest and most immediate impact out of all of the great things included in it and should hopefully remove some of the need for patients to use other sources like GoFundMe or Kickstarter as a way to crowdsource for their insulin costs.
Steve Newmark 08:25
Correct. Yes, so another improvement on the cost front, part of this provision also includes improvements to the coverage of adult vaccines. It eliminates cost sharing and Medicare Part D for recommended vaccines and also requires coverage of adult vaccines in Medicaid with no cost sharing as well.
Zoe Rothblatt 09:17
You know, as a patient advocate, I’m going back to how important this is for our community. People with chronic disease can be at high risk for complications from illness. So to eliminate cost sharing for vaccines, hopefully more people will get vaccinated and more will be protected and therefore protect our community who are so vulnerable.
Steve Newmark 09:35
Absolutely. Herd immunity is so important. We’re not just talking COVID here, and primary care, such as vaccines really should be available to all folks. All right. Are you hanging in there, Zoe? It’s a lot. I know.
Zoe Rothblatt 09:49
I know. Right?
Steve Newmark 09:49
We’re going fast.
Zoe Rothblatt 09:51
Okay, before we move forward, let’s recap really fast. So we started with price negotiations.
Steve Newmark 09:57
Correct.
Zoe Rothblatt 09:57
Then we have that drug prices can’t rise faster than inflation or else there’s a penalty.
Steve Newmark 10:03
Yes. Then we have the $2,000 out of pocket cap.
Zoe Rothblatt 10:06
Right. We also have that $35 monthly cap on the copay for insulin.
Steve Newmark 10:12
No cost sharing for vaccines. And finally, we have the repeal of the Trump administration drug rebate rule.
Zoe Rothblatt 10:20
Okay, let’s dive into that.
Steve Newmark 10:22
This rule would have, it never was implemented. But this rule would have eliminated rebated negotiated drug prices between drug manufacturers and pharmacy benefit managers or health plan sponsors and Medicare Part D.
Zoe Rothblatt 10:36
So coming in with the patient voice again, since the rule never took effect, I guess repealing it won’t really have any impact for people that are currently on Medicare.
Steve Newmark 10:45
Right. But if it had taken effect, it was expected to increase premiums for people in Medicare Part D. That said, the rule also would have eliminated rebates, which ultimately could have been to the benefit of patients.
Zoe Rothblatt 10:58
So complicated. So it seems like this could have really big implications for drug pricing and it’ll be interesting to see how this plays out especially because so many in our community rely on drugs to you know, live meaningfully in daily life with their conditions.
Steve Newmark 11:13
We’ll see what happens. I think when you’re dealing with drug pricing, there are so many factors at play. And there is no one size fits all cure all. If you try to standardize the price of drugs, you’re going to end up affecting innovation, which leads to the development of drugs that help folks in the chronically ill community live better lives. However, if the drug prices are too expensive, then they’re just out of reach for folks who need them. Right now, there’s no majority. As you know, Democrats have 50 members, Republicans have 50 members in the Senate. And it’s only by dint of the Constitution, which calls for the Vice President to break ties, the Democrats can pass legislation like this at all, as has been the case throughout all of 2021. The senator watch is the man from West Virginia, Joe Manchin. Two days ago from our recording, he called for a quote, strategic pause, whatever that means. While Senate Majority Leader Chuck Schumer is looking to take a vote before Christmas. We don’t know where this is going. We don’t know what Joe Manchin, what his strategic pause, which parts of the bill, he may have trouble with, which parts he may be in favor of. It’s not just Joe Manchin, there are others in the Democratic Caucus who have a lot of question marks in the air, including on some of this drug pricing stuff. So it’s hard to say whether the bill, of course will ultimately pass to begin with, but it’s very difficult to say, in what form the bill will ultimately pass. Not to mention once it passes, going back to our favorite cartoon from middle school.
Schoolhouse Rock 12:31
I’m just a bill, yes, I’m only a bill.
Steve Newmark 12:34
How a bill becomes a law.
Schoolhouse Rock 12:36
Here on Capitol Hill.
Steve Newmark 12:37
Once it passes, it’s going to have to go back to the House to reconcile the differences between the House and the Senate versions of these bills.
Zoe Rothblatt 12:44
So Steven, you’re our Director of Policy. What’s your sense about what’s happening in Washington?
Steve Newmark 12:49
I think there was a point when Democrats really wanted to get this bill passed before 2022. Democrats we saw what happened in the off year elections in 2021, in November. Democrats are prepared for a really bad year in 2022. And they kind of want to get this bill behind them to start focusing on the politics. But there’s almost a sense now in Washington amongst Democrats that they’re resigned to the idea that they’re going to lose a lot of seats in the House, and potentially the Senate as well. There’s almost a sense of, you know, what’s the difference if we pass this in December, January, February, or even March, there’s nothing we can do to stave off the bloodbath that’s coming. So let’s just get the right bill rather than try to rush it through. So we’ll see. As I said before, Senate Majority Leader Chuck Schumer is still talking about taking the vote before Christmas, there’s a chance he puts the bill on the floor and tries to force Joe Manchin and others to make their position known, but that’s a really big risk to take.
Zoe Rothblatt 13:44
I want to switch back to our regularly scheduled programming COVID. I’m just kidding. But for real, sometimes it feels like that’s all anyone is talking about. Right?
Steve Newmark 13:53
Yeah, for sure. Especially now with Omicron. That sounds like something from the Marvel Universe. That’s our new enemy.
Zoe Rothblatt 13:58
I know, right.
Steve Newmark 13:59
Omicron, let’s get him.
Zoe Rothblatt 14:01
Before we wrap up, I did want to share the latest news on Omicron. Pfizer said that for people who got all three shots, blood samples show robust antibody levels against Omicron. The caveat here is that this was done on blood samples in a lab and not in the real world. So it’s really preliminary. And this isn’t data specifically on immunocompromised people. But I do think it can provide some level of comfort as we navigate this new phase. Last time you were talking a lot about the confusion and should we be scared, should we have fear and I think as we get this data, it helps with that.
Steve Newmark 14:35
We’re coming closer to the end of the phase of wait and see. But that preliminary data is promising from folks who have the three shots. One of the things I’m most curious about is Israel, where the majority of the country there has three shots of Pfizer actually it’s almost exclusively Pfizer so if we see a lot of Omicron spread there, we know we can break through the defenses with the three shots however, if we see spread, but the virality is not so strong, that could potentially lead us to some comfort. So that’s more of a real world sample, if you will.
Zoe Rothblatt 15:05
For sure, which is helpful to look at as we prepare. But I think that the key message here is boosters help.
Steve Newmark 15:13
Absolutely. We spoke a few episodes ago about boosters versus a third shot, which is where I learned the difference between what a booster is and what a third shot is, technically speaking. And don’t forget, some people are calling it additional because if you got J&J, you might just have one and you’re getting a second. Right.
Zoe Rothblatt 15:30
It’s more confusing.
Steve Newmark 15:31
I’m starting to read a lot of literature and I’m starting to come around to the idea that perhaps the third dose is actually a dose in and of itself and not a booster, if you will. You know, vaccines have different dosage schedules that take years to develop. And it may just be that the third shot is actually the proper dosage.
Zoe Rothblatt 15:50
Yeah, it’s just part of your preliminary vaccine dosage.
Steve Newmark 15:55
Right? And it’s strength in with dealing with Omicron may tend to validate that theory, if you will, not that it matters, because ultimately, what matters is everyone over the age of 16 now, who’s eligible should get the booster and if you still know folks who are not vaccinated, obviously, they’ve got to get vaccinated as quickly as possible.
Zoe Rothblatt 16:11
For sure. That’s the key message here. I think right now, it feels like our vaccine is our biggest line of defense for getting through this and through the variants. So Steven, turning to my favorite part of the show, what did you learn today?
Steve Newmark 16:24
Well, I learned in just talking about Build Back Better how confusing things can be in Washington and how difficult it is to relay what’s happening in Washington and explain it and its relevance to the patient community.
Zoe Rothblatt 16:35
I definitely learned that too. And, you know, I also learned that there’s six key provisions in there for drug pricing. And when we break them down, it’s for sure complicated and each have pros and cons and it’ll be interesting to see what happens.
Steve Newmark 16:50
Well, we hope you learned something, too. We hope to hear from you about Omicron, about Build Back Better or whatever is on your mind. Send your email to The Health Advocates at GHLF dot org. Or better yet, include a short video or audio clip.
Zoe Rothblatt 17:03
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 17:11
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 17:16
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.
Steve Newmark 17:35
I’m Steven Newmark. We’ll see you next time.
Narrator 17:40
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 9: Should We Fear the Variant Omicron?
The majority of Americans have been vaccinated, including the millions of people who have already received an extra booster shot. But how will these vaccines protect us from the new variant Omicron?
“Take precautions, lets prepare ourselves by being calm and if we have to lose that calm and become crazy, we’ll deal with that when we have to deal with it,“ says Steven Newmark- Director of Policy at the Global Healthy Living Foundation.
S2, Ep 9- Should We Fear the Variant Omicron?
SPEAKERS
Steve Newmark, Narrator, Zoe Rothblatt
Narrator
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steve Newmark
Take precautions, let’s prepare ourselves by being calm. And if we have to lose that calm and become crazy, we’ll deal with that when we have to deal with it. 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
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve Newmark
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
So, let’s start as always, with the listener comment. Are you ready?
Steve Newmark
As ready as I can be.
Zoe Rothblatt
Okay, so a little different this time. I saw this one on Twitter and it came from “chronic migraine girl” who wrote listen to the newest Health Advocates podcast episode on my morning drive. Great way to start the day.
Steve Newmark
Nice.
Zoe Rothblatt
And break through the confusion on COVID-19 boosters.
Steve Newmark
Nice.
Zoe Rothblatt
Thanks, Zoe and Steven. Wow, we definitely like that. Boosters are definitely becoming more popular. And I think that their popularity is about to rise with this new variant that we’re going to talk about today. For sure. Well, “chronic migraine girl”, thanks for your review. And we invite all our listeners to go to Apple Podcasts leave an honest five star rating and positive review.
Steve Newmark
So Zoe, how was your Thanksgiving?
Zoe Rothblatt
It was really relaxed. We sort of just ended up keeping it to our core family. And we had a nice brunch and watched the parade and made turkey and it was actually beautiful weather. The dogs were outside playing, things were really nice. How about you?
Steve Newmark
It was nice to see family again. That was a lot of fun. When last we spoke, I was on my way to my in-laws, and my mother in law laid down the rules for safety. And it was good thing that you did because we had 19 people expected and one of them tested positive before coming out. So we wound up with 18, which is still a pretty healthy number to say the least. And we had a great time.
Zoe Rothblatt
Oh, what a great testament to how important testing is.
Steve Newmark
Definitely.
Zoe Rothblatt
Like blown away by the fact that you know everyone was able to get tested and and you were able to say, Okay, this is unsafe, we need to rethink our plans even last minute.
Steve Newmark
Thankfully, it was only one cousin, he’s doing fine. No, no symptoms or anything of that nature.
Zoe Rothblatt
Oh, good to hear.
Steve Newmark
But the rest of us all tested fine. We also got some bad news. It was literally Thanksgiving Day that the world learned of a new variant gaining attention in South Africa. We all know it as the Greek letter Omicron. It’s concerning to epidemiologist because it has a large number of mutations, and many of them are on the spike protein. And this is the protein that the virus uses to get into cells and what is targeted by the vaccines. We have a lot of questions. And I think the biggest one is will our vaccines hold up? I have two shots plus my booster third shot, whatever you’re calling it, and I’m immunocompromised and I’m just wondering, will I be okay in the face of Omicron? That’s the million dollar, billion dollar, trillion dollar question that is yet to be answered. The dots that I’m connecting from my chair, I am not a scientist. I’m a lay person. I read regular news articles. I’m not reading scientific journals. But from all of the sources that I read, ultimately, we don’t know the answer to that question, the question of whether it this particular variant can evade the vaccines. There’s a lot of talk that the vaccines will provide some level of protection, number one and number two, there is a lot of talk. Oh, I hear Macintosh, he’s weighing in as well.
Zoe Rothblatt
Yep.
Steve Newmark
I hear a lot of talk that because we’ve already developed the mRNA technology, we can, for lack of a better term, upgrade that technology specifically to deal with Omicron in a much shorter timeframe than the initial vaccine development.
Zoe Rothblatt
Okay, so what me and Macintosh are hearing over here is that we have a lot of big questions. But we also have a lot of options. So we shouldn’t be too worried that we don’t know enough right now. But we do have a plan. It’s not like the beginning of the pandemic, when everything was up in the air. We have things that we can do and we have scientists working on it.
Steve Newmark
One thing to note is that our leaders, our scientific leaders, our political leaders, are putting out very balanced statements, very different statements than what you’re seeing in a lot of the mainstream media headlines. As an example, the World Health Organization put out a statement saying the variant has a large number of mutations, some of which are concerning. Preliminary evidence suggests an increased risk of infection with this variant as compared to other variants. But of course, when I click on various news articles, I see headlines such as “What we know about Omicron,” “The Omicron variant, we still don’t know what’s going on,” “The Omicron variant is causing anxiety” and so on and so on. It’s causing anxiety. It’s almost a chicken and egg thing, what’s causing the anxiety? Is the anxiety being caused because we’re told to be anxious, or is there really a reason to be anxious? So Zoe, it reminds me of a phrase I’ve heard from psychologists known as anticipatory anxiety, sort of anticipation of an adverse act is actually causing one to become anxious even before the act itself has arrived. It’s kind of like when you have to give a speech, you start getting anxious the night before, or you are anxious that you may get called upon to do a certain task or in this particular case, you’re anxious that Omicron may turn out to be worse than is feared. All that being said, I would rather plan for the worst and have the best outcome happen than the opposite.
Zoe Rothblatt
Me too. And I think that phrase, anticipatory anxiety really rings true for our community.
Steve Newmark
Definitely.
Zoe Rothblatt
You know, these are people with underlying condition who may be at high risk for complications from COVID. So what we don’t know so much about the variant. It’s pretty scary for people in our community who just don’t know what the reality is, and how much more you have to isolate or the vaccines have been effective enough for us. It’s different news for people in our community. And I think it’s hard when mainstream headlines are ignoring that people are immunocompromised, and it’s a large portion of the population that’s living like this.
Steve Newmark
Absolutely. First of all, hope it’s not Macintosh who’s living like that, too. But if it is, make sure he knows be a little calm, you know, we’ll see where we are. Take precautions, which is something you know, we still should have been doing all along, particularly those of us dealing in the immunocompromised community. I was thinking about this as well. There’s nothing for folks like us to do. We’re not scientists, we’re not on the policy team that’s going to determine who gets to come in or out of the country, we don’t have the scientific capabilities to determine the efficacy of this particular strain. So let’s prepare ourselves by being calm. And if we have to lose that calm and become crazy, we’ll deal with that when we have to deal with it.
Zoe Rothblatt
And if there’s one thing we can do, aside from just staying calm, it’s it’s this, it’s talking about it, raising the voice of people in our community, and just getting the word out there that there are people who are really scared, and that’s okay. And we know our tried and true safety precautions, vaccination, masking, distancing, regular testing as evident from your Thanksgiving dinner.
Steve Newmark
Yes.
Zoe Rothblatt
So we have the best of what we can do.
Steve Newmark
Yeah. And I would also just add, try to encourage everyone, you know, if they’re not vaxed by now get them to get vaxed. Try to get them to get the booster. It’s very early, but preliminary data is showing that the rate of boosters has been really increasing exponentially since it was approved for all adults a few weeks ago. It looks like they’re moving to approve boosters for 16 and 17 year olds as well. And then beyond that, we’re seeing again, it’s very early, but it’s starting to increase as a result of news of Omicron. So that’s a good thing, too.
Zoe Rothblatt
So what are our vaccination rates looking like?
Steve Newmark
Well, that’s a great question Zoe, because so much of the talk over the past year has been so negative. A strong focus on the unvaccinated. But the reality is that the overwhelming majority of the US is in fact vaccinated.
Zoe Rothblatt
That is great news, Steven, and also a great point, something that we really do need to remind ourselves of more often. So I’m going to throw some numbers out here. Are you ready?
Steve Newmark
Ready.
Zoe Rothblatt
As of our recording, 80% of people over the age of 12 have received at least one vaccine, which is definitely very encouraging and 69% are fully vaccinated. And over 18, the numbers even jump to 82% have at least one vaccine and 71% fully vaccinated.
Steve Newmark
And it’s too early to start looking at the under 12 numbers since kids ages five to 12 just became eligible last month.
Zoe Rothblatt
Good point, you know, it does take some time to see a plateau and where we’re at. But the thing that we do know right now is that it’s easing a lot of fear and anxiety among parents who’ve been living in uncertainty because their kids couldn’t get vaccinated. You know, we got the vaccine emergency use authorization almost a year ago in December and kids just recently, so it’s been a long haul for parents and I wanted to ask a few episodes back, you mentioned that your kids were getting the shots. Are you hearing more about what’s happening among their friends?
Steve Newmark
Yeah, so my children are now double vaccinated, between that and the boosters, this is like peak immunity in the Newmark household, for sure. But I’m not hearing more from other parents. And I think it’s still healthcare, it’s still fraught, you know, you’re not supposed to mention religion or politics, or I guess, medical issues in certain conversations, and it doesn’t come up. And as much as I’m bursting at the seams to start mentioning it and inquiring, I just don’t do it. I pump my kids for information like, Hey, are you hearing anything about vaccines? Are your friends talking about? You know, they’re kids so that’s not happening. It’s frustrating. I would love to get an email from the school saying, hey, good news. We’re 95% vaccinated or something of that nature.
Zoe Rothblatt 09:27
Well wait to hear what the data showing about you know what percent we’re at with children. And if it’s matching up to this 80% that we’re seeing with adults?
Steve Newmark
Yeah. Yesterday at my kids’ school, they had a vaccine clinic. I don’t know what you call it a vaccine pop up, whatever those are called. And it specifically said only for those getting the first vaccine, which made me think oh, there’s still people out there vaccinating for the first time for their kids even though it’s been several weeks. I take that mostly as a good thing that they’re still pushing forward. But I’ve seen more than one email along the lines of, if you want to be fully vaccinated by Christmas, you need to start your first vaccine on this day, your second vaccine by this day, in order to have full vaccinations that is by Christmas. And I was hopeful that people would take that to heart as their North Star. Perhaps they are. Let’s get back to the positive. Turn back a year ago, vaccines were just starting to be rolled out for the healthcare workers or certain populations only. And you know, there was a lot of talk in the general public, Well, I want to wait and see, I’m not really sure let’s say like goes and then there was this overwhelming anti-vax push that I don’t think anyone could have anticipated how mainstream that would have gone. And even in the face of all that, we’re at this 80% threshold, which is pretty good. And of the 20% or so that remain unvaccinated, there’s still a sizable portion there that is not anti-vax, per se, but rather still in their wait and see mode. As time goes by, as mandates force folk’s hands, this group will shrink. The group that has politicized the vaccines have likely reached the point of no return, you know that they’ve dug in too deep and simply won’t get vaccinated. And it’s probably pointless to even try to convince them at this point. Look, there’s a regional disparity, some places are in the 60s, some places are in the high 80s. And it will be great to get to 90% vaccination in the country as a whole. And there are lots of things that we, the royal we, could have done better to get there. But I do think it is important to remember that the overwhelming majority of Americans are vaccinated.
Zoe Rothblatt
It’s really sad, but it is true. And if we’re focusing on the good, it’s important to remember that 80% is still a really good portion to be vaccinated. On that note, I’ll turn to our favorite part of the show. What did you learn today?
Steve Newmark
Well, you know, just in having this discussion, I learned that it’s okay to be anxious, a little bit anxious. But let’s wait and let’s save most of our worrying for when we have to worry.
Zoe Rothblatt
And for me, I was reminded of the importance of testing. I think sometimes when you test and it’s like, Ah negative, it’s like, do I really need this, but no, you do. And your story really rings true for that, and it is an important factor in our safety precautions.
Steve Newmark
Well, we hope that you learned something too. We’d love to hear from you about Omicron or your anxieties or anything else that’s on your mind. Send an email to The Health Advocates at GHLF dot org. Or better yet, include a short video or audio clip.
Zoe Rothblatt
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark
Also, email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt
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.
Steve Newmark
I’m Steven Newmark. We’ll see you next time.
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 8: To Boost Or Not To Boost
Studies show COVID vaccines wane over time, leading to a push for a booster, or an additional shot of the COVID vaccine. In this episode, we explore whether to get the booster, when to get it and how often.
“Needles are intimidating for sure and I definitely felt a lot safer after getting the third shot,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation.
S2, Ep 8: To Boost or Not to Boost
SUMMARY KEYWORDS
vaccines, booster, shot, question, boost, zoe, folks, needle, vaccinated, listener, mets, fda, dose, authorized, people, waning, studies, felt, booster shot, phobic
SPEAKERS
Narrator, Dr. Fauci, Theme song, COVID PSA, Movie scene, Steve Newmark, Zoe Rothblatt
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
Needles are intimidating for sure and I’ve definitely felt a lot safer since getting that third shot.
Steve Newmark 00:16
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 00:26
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve 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.
Zoe Rothblatt 00:38
So Steven, let’s start as we always do with a listener comment. Are you ready?
Steve Newmark 00:43
As ready as I can be.
Zoe Rothblatt 00:44
So this one came from “Nats Not Mets” and the comment said “outstanding and just what the doctor ordered, love this podcast.” Well, this one made me smile to think of our show, as you know, a healthy dose from the doctor.
Steve Newmark 00:58
Interesting name. “Nats Not Mets.” I don’t know if that’s a little dig in my favorite baseball team there.
Theme song 01:02
“Meet the Mets, Meet the Mets, step right up and greet the Mets.”
Steve Newmark 01:09
But we appreciate the comments so keep them coming.
Zoe Rothblatt 01:11
Thank you for your review “Nats Not Mets.” We invite all our listeners to go to Apple Podcasts and leave an honest five star rating and positive review. Steven, the big question on my mind, and I think many people’s minds here in the US is to boost or not to boost, that is the question.
Movie scene 01:28
“To be or not not to be, that is the question.”
Steve Newmark 01:30
Ahh, whether it is nobler in the mind to suffer the slings and arrows of contracting COVID or to take arms against a sea of troubles. And by not vaccinating ourselves and them.
Movie scene 01:38
“To sleep no more.”
Steve Newmark 01:41
That is about all I can remember from “Hamlet.”
Zoe Rothblatt 01:42
Well, better than me.
Steve Newmark 01:44
So what should folks do about this booster?
Zoe Rothblatt 01:47
Listen to your doctor, I think.
Steve Newmark 01:48
Well, that goes without saying. So no, you can’t just stop there, Zoe, let’s get deeper into this.
Zoe Rothblatt 01:53
Okay, take me on that road.
Steve Newmark 01:54
All right, so let’s break down what we’re talking about here- boosters, aka the third shot. So as of our recording, the FDA has authorized a booster shot for anyone 18 and older who has taken the Johnson and Johnson vaccine. As for the Moderna and Pfizer vaccines, the FDA has authorized a booster shot for people who fit into a few categories. And those folks include folks who are over 65, folks who are living with an underlying condition that puts them at high risk for severe COVID. Or those who work or live in environments that put you in a high risk for COVID.
Zoe Rothblatt 02:27
You know, it doesn’t end there. The booster campaign is ongoing outside of these few groups.
COVID PSA 02:32
Hi, it’s Dr. Dave Choccy, with an update about COVID-19 booster shots.
Zoe Rothblatt 02:37
Other countries have authorized boosters for all adults 18 and over, for example, Israel and Canada have done this, you know, Canada our close neighbors, so I think we’re really looking there to see what’s going on and what our next move is. As of this recording, health officials in Arkansas, New Mexico, Colorado, California and New York City are in fact not waiting for the FDA.
COVID PSA 03:02
Make today the day, take care of New York.
Zoe Rothblatt 03:05
They’ve authorized boosters for all adults. So you know, if you’re an adult, and you want a booster, and it’s been six months since your last shot of the mRNA vaccine, you can seemingly get a booster in any of these few states.
Steve Newmark 03:18
And it seems as though the FDA is moving towards allowing for boosters for everyone, all adults 18 and over. So we still haven’t answered the question. Should folks get the boost?
Zoe Rothblatt 03:28
Well, the second caveat that this is a personal decision, I’d say the answer is that it would certainly help. Studies are showing that all three of the vaccines wane in effectiveness over time. And before we dive into that, I think it’s important to preface this by saying that does not mean that the vaccines are not working. In fact, they are. Waning immunity happens to some extent with all vaccines and their effectiveness often reduces as time goes on. But back to what I was saying about waning immunity for these COVID vaccines, many studies are showing that the mRNA vaccine, so Pfizer and Maderna, remain more than 50% effective at preventing infection, which is the level that they had to meet in order to first get authorized by the FDA back in 2020. So you know, they’re still very effective at preventing severe illness. But when we think back to when they were first authorized, it was about 90 something percent effective against infections. So we’re seeing a decline in protection overall. And I think that these studies are helping to shape the booster conversation and recommendations to say, you know, we need this extra protection.
Steve Newmark 04:36
And certainly immunocompromised individuals should strongly consider a third dose and for the rest of society, it looks like regular doses like an annual flu shot are in our future and that seems okay with me. COVID is a new disease and the vaccines are new too. While we know they are safe, we also know that we need to see long term studies to learn how long they will last. It appears based on the latest evidence that boosters are a helpful thing.
Zoe Rothblatt 04:59
I actually got mine and I definitely felt a lot safer since getting that third shot. Right after the FDA said immunocompromised people with underlying conditions should get it, I went and had a conversation with my rheumatologist about what to do. And she said, get it and gave me the same advice as my first two shots, which was, you know, what medications to hold when and for how long and I was grateful to have her advice as the news was coming in. And I really didn’t know what to do.
Steve Newmark 05:28
Until the FDA makes the full authorization available, it can be tough. Personally, I was in agony over what to do for the third shot. We have Thanksgiving coming up, I want to get fully boosted. I started reading stories about the Pfizer studies. Pfizer’s what I took and the waning effectiveness over time, and I started to get worried. And you know, we’re heading into a busy holiday season where students are coming home from colleges and folks are really mixing with one another once again, and it’s an easy time for a virus to transmit itself. And, you know, I wanted to get the boost very badly. And I was I was wrapping myself in knots. Because I’m a stickler for rules. I like to follow the rules. And I went on to various websites. And I started looking around and it asks you to affirmatively state that you meet one of the requirements. And as of a few days ago, I did not meet one of the requirements. And I just wouldn’t do it. Coincidentally, as I was searching New York City where I live specifically announced that they would make it available for everyone 18 and older. And I signed up immediately. And I said okay, without the ethical considerations, I felt better about it.
Zoe Rothblatt 06:30
Definitely. And I think that there is a lot of confusion going on. My question is, you know, what about the experts that are skeptical of boosting right now? Or, or maybe not skeptical, but have been closely watching and not making a recommendation. Yet it feels a little bit like the wild west out here with states deciding to give boosters ahead of the FDA weighing in.
Steve Newmark 06:52
You know, I think one question that we’re completely ignoring, of course, is the global question, the idea of those of us in the wealthier nations, like the United States taking a third shot, where so many around the world have yet to receive their first shot. So just as a caveat, we are putting that question aside. We’re fortunate enough to live where we live, and these boosters are available. So I think that’s part of what’s weighing on some folks. But I think for the experts that you’re describing, there’s also the consideration that many Americans have still yet to get the first shot. And there’s a sense that pushing the third shot may actually delay some folks in taking the first shot.
Zoe Rothblatt 07:26
That’s a really good point. But when we think about the fact that we are waning in immunity, it almost feels like at some point in the near future, people who have been vaccinated could be on par with people who aren’t. When we think about, you know, needing to get a regular dose and keep up our immunity. I think it’s key and in our COVID response to be looking at the full picture here.
Steve Newmark 07:50
Yeah. And I think a related issue to the one you brought up earlier about experts being skeptical about authorizing the third shot, I’ve not read much downsides to getting a third shot, at least for an individual. We know what the risks are to the vaccines generally, they’re low. The risks are generally short term, like with all vaccines, but I think that there’s a worry that the general public will start to lose trust in vaccines. Like “wait, wait, wait a minute, you told us to get the vaccines a year ago, and now you’re telling us we need another vaccine? What is this? What’s going on here? I thought these things work, they don’t work. Oh, look, people are getting sick, who’ve gotten vaccinated. Why should even take that vaccine?” That’s part of what’s weighing on folks. And it is hard to grapple with the idea that we’re dealing with a new virus and a new vaccine. And the initial doses were I don’t want to say that they were rushed out, that’s not necessarily the right thing. But we wanted to get through the trials as quickly as possible. And we spaced the first shots out by three weeks, right, we could have just as easily spaced those first shots out by two or three months. But that would have delayed the trials exponentially. And as such, it would have been harder to get those first shots out. What we may be learning over time is that perhaps the proper course of action is to take a booster every six months or every 12 months, that might be the right way to go. But of course, in trying to get the initial vaccines out, we didn’t want to take time during the trial phase to learn something like that.
Zoe Rothblatt 09:09
It’s true. We don’t know what that sweet spot is to get a booster and if people boost now it’ll give us more data to figure out when is that sweet spot in the right time moving forward.
Steve Newmark 09:20
I’m gonna quote Dr. Fauci. He said a booster may be a bonus or may be part of the primary regimen.
Dr. Fauci 09:26
Ultimately, the proper complete regimen will be a single dose followed in a few weeks by the second dose, followed several months later by the booster.
Steve Newmark 09:37
So, I think to answer the initial question, what to do about boosters with the caveat always talk to your medical professional. Studies are pointing to the fact that it will increase your immunity and we know that downside risks to these vaccines are very minimal. So you know weighing those factors, you’ll have to make the decision on your own but something certainly to consider.
Zoe Rothblatt 09:58
Great way to look at it, Steven, we’ll leave it at that and as always keep our listeners updated on what the news is saying.
Steve Newmark 10:04
Excellent. Well, we’ve read a listener comments today. So I thought today we would do our first ever listener email question.
Zoe Rothblatt 10:10
Well, that’s very exciting. I’m ready for it.
Steve Newmark 10:12
Jen P from Illinois writes, “Love the show. Thanks for making this crazy time so relatable. I have a question for you guys. Do you think that some folks who are anti-vax are really just needle phobic, and are using the rising popularity of anti-vax as an excuse?
Zoe Rothblatt 10:29
Whoa, interesting thought.
Steve Newmark 10:30
I think there’s some validity to that idea. And is that Macintosh weighing in?
Zoe Rothblatt 10:35
I think maybe I think he has a strong opinion on this. But for now, I’ll keep it to my thoughts. And I think that that probably rings true for those who are vaccine hesitant, which is a little different from being anti-vax. And I imagine there is a portion of adults who aren’t vaccinated because of a needle fear, especially with these COVID vaccines that we’ve been talking about that require multiple shots and perhaps a booster so even a third shot and if you’re needle phobic, that’s a lot to encounter.
Steve Newmark 11:02
Yeah, based on absolutely nothing. My guess is that there may be a small number of folks who are needle phobic and using this as part of their excuse, you know.
Zoe Rothblatt 11:15
I have to give myself regular injections for my conditions. And I take pause every time and have to even count down from five to get myself to do it. Needles are intimidating for sure.
Steve Newmark 11:26
Bottom line, not sure. But it’s an interesting thought.
Zoe Rothblatt 11:29
Yeah. Thanks for emailing us, Jen. Well, Steven, we’re coming up on the best part of the show. What did you learn today?
Steve Newmark 11:36
Well, I learned just to think about the idea that folks who are needle phobic may be part of the reason for so many of the unvaccinated.
Zoe Rothblatt 11:42
And I learned your quote from Dr. Fauci that boosters are an essential part of our COVID response. And we need to think of them in that way as opposed to maybe just a boost.
Steve Newmark 11:53
We hope that you learned something too. We’d love to hear from you about what you’re doing with the third vaccine. Send your email to The Health Advocates at GHLF dot org. Or better yet, include a short video or audio clip.
Zoe Rothblatt 12:05
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 12:12
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week at The Health Advocates at GHLF dot org. And Zoe, this is our last podcast before Thanksgiving. So we wish everyone a very happy holiday. Don’t eat too much.
Zoe Rothblatt 12:25
And if you do, don’t worry. That’s what the holidays are for. Thanks, everyone 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.
Steve Newmark 12:48
And I’m Steven Newmark. We’ll see you next time.
Narrator 12:53
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 7: The Holidays, Big Bird, and COVID
It’s beginning to feel a lot like…the holidays, holidays that will feel different from last year thanks to vaccines, COVID testing, and the lifting of the travel ban. But there are still precautions you need to take to protect yourself from the pandemic.
“I do want to scream, I said, “what do you think is going to happen in a few weeks that hasn’t already happened?” These vaccines have been around for a long time. They’ve been tested, tested, and tested. Get it as soon as possible,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S2, Ep 7: The Holidays, Big Bird and COVID
SUMMARY KEYWORDS
vaccinated, vaccine, pandemic, holidays, year, people, reunite, thinking, caseload, rule, plans, december, conversations, weeks, zoe, administration, biden, holiday season, ticketmaster, steven
SPEAKERS
Big Bird, Steve Newmark, Narrator, Zoe Rothblatt
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steve Newmark 00:09
I do want to scream, I said, “what do you think’s going to happen in a few weeks that hasn’t already happened?” These vaccines have been around for such a long time they’ve been tested and tested and tested. Get it as soon as possible. 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 00:31
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve 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. Let’s start as we always do by reading a listener comment.
Zoe Rothblatt 00:46
I’m ready for it.
Steve Newmark 00:47
Well, in episode five, we talked about public health officials under attack and “LSinVA” writes “interesting and thought provoking discussion, makes clear that we all need to protect this important sector.” L, thank you for that comment. We appreciate it.
Zoe Rothblatt 01:02
Yeah, we definitely do. We’ll try to keep the conversations thought provoking. And everyone if you have thoughts, definitely share them with us. Write a review, tell us what you’re thinking about in protecting public health.
Steve Newmark 01:14
Okay, great. Now, let’s get into this episode.
Zoe Rothblatt 01:17
So Steven, what’s on my mind right now is that the holidays are coming up. It’s our second year of holidays during the ongoing COVID 19 pandemic. Can you believe it?
Steve Newmark 01:27
I guess I can believe it because it’s happening. But no, you’re right. I would have thought there wouldn’t be more than one such season like this.
Zoe Rothblatt 01:34
It’s true. How are you planning on celebrating the holidays this year?
Steve Newmark 01:37
We took a year off last year of our traditional Thanksgiving holiday celebration with my wife’s family. And we’ll be regathering again this year, though it’s going to be a bit different. We’re all taking various precautions in a way that we hadn’t done pre pandemic as you can imagine. How about you Zoe?
Zoe Rothblatt 01:54
Similar situation here. Our Thanksgiving plans were put on pause last year during the thick of it. And when we were still really isolating we just had it with our immediate household. And this year, I would say that my family is in the wait and see bucket. We’re all texting and figuring out what the best thing is to do and who’s comfortable with what and what precautions we need to take to all feel safe together. But I’m very hopeful that we can be together.
Steve Newmark 02:21
On a very personal level, I’m very excited Thanksgiving happens to be my favorite holiday of the year, you get together with family and eat a lot of food. So those are two of my favorite things to do.
Zoe Rothblatt 02:30
Me too and early dinner is always a good thing.
Steve Newmark 02:33
And football.
Zoe Rothblatt 02:34
Znd there’s a lot of decisions to make around the holidays this year. I actually wanted to bring up to you a recent poll from our COVID-19 Patients Support Program asking about holiday plans. And this was a poll done for people living with chronic disease. 11% of respondents said they plan to celebrate the holidays like they did before the pandemic. This was a little surprising to me.
Steve Newmark 02:58
That’s very surprising to me that 11% of chronically ill individuals are going back to pre pandemic days. In our household, my mother in law has already sent out a missive- everyone who comes has to get tested the day that they come or the day before they come. She’s also asking everyone to take extra precautions the week before we come out. So that means, you know no dinners or anything outside of the household and things of that nature.
Zoe Rothblatt 03:22
These are great tips, I’m definitely going to keep them in mind. And I hope our listeners do as well when thinking about organizing plans at the holiday. And going back to the poll, the majority are planning on taking at least one type of precaution. And whether that means rescheduling celebrations to allow for testing in advance, changing the location to eliminate travel or you know limiting who you’re seeing throughout the holiday season.
Steve Newmark 03:46
I think that’s more of the norm the idea that we’re taking at least one level of protection, whether it’s testing, using the week before not to do something, making sure that every family member is vaccinated.
Zoe Rothblatt 03:57
We’re definitely in a different situation than we were last year. Many of us are vaccinated. Last year the vaccines were just on the cusp of getting that emergency use authorization in December and that was only for healthcare officials.
Steve Newmark 04:10
Right.
Zoe Rothblatt 04:11
But now, you know we have the vaccine. We have the booster. Kids are getting vaccinated. Steven, how’s that going, I know last time we talked about that you have children and your hope is to get them vaccinated.
Steve Newmark 04:22
Yes, it feels great. My children are six and nine years old. So as soon as it came out, I went online. It’s like going onto Ticketmaster and try to get tickets and find their location. But you know, I won that Ticketmaster lottery, I guess, I was able to get them in pretty early. Also where we live, they were providing vaccines at the schools as well. So it seems pretty good. I feel very lucky that in each of my children’s classrooms, it’s only been a few days since the authorization came out. And they’re at about 50% of kids have gotten one shot already. So that’s a good feeling.
Zoe Rothblatt 04:51
Wow, that’s really impressive. And how are your kids feeling after the vaccine?
Steve Newmark 04:55
Ahh, you know, they didn’t feel anything at all.
Zoe Rothblatt 04:58
Oh, wow.
Steve Newmark 04:58
Well, it’s a smaller dose. It’s only one third. As I recall for adults, the norm was to feel something more so after the second shot, so we’ll see in three weeks what it’s going to be like but talking to other parents, this is all anecdotal, but I haven’t heard of any kids who have had issues that day or the following day.
Zoe Rothblatt 05:14
Still anecdotal conversations and thoughts are really helpful in these scenarios. It’s what we do here, we break down the news in an easy, understandable way. It’s hard sometimes when you’re just seeing the headlines, vaccines approved and you want to know, well, what will that feel like for me? The same thing when people living with chronic disease often go to each other in the community to hear what are you saying, I got my doctor’s advice. Now, I also want to combine that with what my friends are saying,
Steve Newmark 05:40
Yeah, that’s true. You know, even my kids are out there chatting away to their friends about getting the vaccine and what it felt like and like, oh, it’s, it’s better than a flu shot. It doesn’t hurt as much.
Zoe Rothblatt 05:50
That’s so cute. The playground conversations about vaccines. I love it.
Steve Newmark 05:55
Yeah, I’m fortunate they live in an area where the peer pressure is actually to get vaccinated rather than the opposite. So hopefully, that peer pressure will continue to build in a way that we get to almost 100% vaccination rate.
Zoe Rothblatt 06:08
This is giving me hope that kids at such a young age are pro vaccine and having these conversations.
Steve Newmark 06:15
I’ll tell you anecdotally, on the other side, I do hear from some parents who will say things like, I want to wait a few weeks and see how it goes. And I bite my tongue because I don’t want to engage and come off as a jerk, because I don’t think that’s helpful to anyone in the conversation. But I do want to scream, I said, what do you think’s going to happen in a few weeks that’s that hasn’t already happened? These vaccines have been around for such a long time they’ve been tested and tested and tested, do you really think something’s going to happen in a few weeks? In fact, you know, get it as soon as possible, but I bite my tongue, because I think that’s the wisest course of action in these particular instances.
Zoe Rothblatt 06:47
And on the idea of getting it as soon as possible in the context of our holiday season. You know, research shows that there’s significant benefits just even two weeks after the first dose. So even having that one dose under your belt for the earlier holidays coming up. It’s better than nothing and could reduce cases and have children reunite with grandparents and immunocompromised loved ones.
Steve Newmark 07:08
Absolutely. So based upon the timing, you have to wait three weeks for the second vaccine and then two weeks after that, for the vaccine to take full effect. That’s a total of five weeks, so it won’t be possible to be fully vaccinated, if you will, by Thanksgiving. But as we move into December, depending on when you get the vaccine, you may be fully vaccinated by the end of December to celebrate holidays like Christmas, Kwanzaa, New Year’s. Hanukkah comes early in December this year. So that’s going to be a tough one to be fully vaccinated for but there’s reason to be hopeful. I mean, five weeks marking back from let’s just say Christmas, that’ll be a very Merry Christmas for a lot of folks celebrating there.
Zoe Rothblatt 07:43
And I heard Santa’s vaccinated too.
Steve Newmark 07:46
Oh, and Big Bird.
Zoe Rothblatt 07:47
And Big Bird.
Big Bird 07:51
Something’s going on down at the store. Don’t wait. Vaccinate.
Steve Newmark 08:01
Yeah, I don’t know if we want to wade into that one. But Big Bird is vaccinated. He’s officially six years old I found out and was eligible. Amazing because he’s been around since 1969.
Zoe Rothblatt 08:10
Well, what else is at play here when we’re thinking about gathering for the holiday season?
Steve Newmark 08:15
Another vaccine related factor here are the legal challenges to President Biden’s mandate plan. The Biden administration set January 4, as the deadline for large companies to mandate coronavirus vaccinations or to start weekly testing of their workers. And this is for companies with 100 or more employees. The rule was followed by threats of legal action from Republican governors and others who argued it overstepped the administration’s legal authority. And recently a US federal appeals court temporarily halted this plan citing grave statutory and constitutional issues with the rule.
Zoe Rothblatt 08:46
Okay, so we’re hearing threats and quotes. I’m gonna call lawyer, say Steven, you’re the lawyer here. So you’re gonna need to explain this one.
Steve Newmark 08:53
Okay. Well, basically, opponents of President Biden’s rule are arguing that the administration’s power to issue emergency rules in the workplace are limited to hazards such as industrial chemicals, not a widely circulated virus. They also accused the Biden Administration of regulating healthcare, which is the power traditionally left to the states.
Zoe Rothblatt 09:13
So in thinking about what the counter argument will be in favor of the rule, what are proponents saying?
Steve Newmark 09:19
Well, the counter argument or the argument from the Biden Administration will most likely focus on the fact that there is a real danger from COVID entering the workplace. And because of an emergency temporary standard rule, the administration is allowed to address what is known as a quote, grave danger. They will also have to show that there are no other means of addressing the grave danger.
Zoe Rothblatt 09:38
Do you know the timing on this?
Steve Newmark 09:40
You know, we have that looming deadline of January 4, it depends how high the appeals end up going. If they make it all the way to the Supreme Court. It could take us into late December, but I think realistically we’re looking at a final determination by mid December otherwise it will be difficult to adhere to that January 4 deadline.
Zoe Rothblatt 09:57
That’s interesting to think about in the context. of holidays and this making a difference of getting people vaccinated.
Steve Newmark 10:05
Yeah, and there’s another factor at play this holiday season. The U.S. has lifted the travel ban for vaccinated foreigners. Fully vaccinated, travelers will be allowed to enter the United States if they can show proof of vaccination and a negative COVID test taken within three days of travel.
Zoe Rothblatt 10:19
This means that families who’ve been apart for a really long time will be able to reunite. I think the restrictions have been in place for more than 18 months, which is a long time.
Steve Newmark 10:28
Wow.
Zoe Rothblatt 10:29
To go without seeing family.
Steve Newmark 10:30
Yeah, we’re already seeing videos and photos from major international airport hubs such as JFK in New York and Dulles in Washington with families reuniting and it’s definitely heartwarming to see that.
Zoe Rothblatt 10:42
On the one hand, I’m really glad that there’s such strict restrictions in place and people have to show vaccination and proof of a negative test. So ideally, this shouldn’t be contributing to new cases. However, you know, we do see breakthrough infections, and it’ll be important to see how this plays out over the course of the season.
Steve Newmark 10:58
It goes along with what we’ve talked about in the past about how do you balance, how do you live permanently with coronavirus and other viruses like the flu and the cold. You could always shut everyone out and try to tamp things down to zero caseload. But at a certain point you have to slowly reopen society and reuniting folks with family members is certainly a big part of that.
Zoe Rothblatt 11:17
For sure. Have you heard anything about, do people feel safe enough to do this or how are the airlines handling that?
Steve Newmark 11:24
Well, in terms of international bookings, the airlines are reporting a big jump and expect a surge in travelers even before the peak holiday period. United, for example, will fly 69% of its 2019 international schedule in December, which is up from 63% this month. American Airlines international capacity for November and December is set to be more than double that of a year ago. So we’re starting to see more flights for sure.
Zoe Rothblatt 11:46
So given our last conversation on the podcast out, living with a pandemic. it seems like we could be on the road to that reality.
Steve Newmark 11:54
It’ll be interesting to see how the holidays play out this year. I would be surprised if there isn’t some uptick in caseload of coronavirus. Because similar to colds and flus they tend to thrive in colder weather when people gather indoors, because it’s an airborne virus. And the likelihood is that the caseloadswill jump but hopefully with all the precautions that everyone will be taking with the increase in vaccination rates, the hope is, of course, that we emerge in the spring without a large spike in those caseloads.
Zoe Rothblatt 12:24
For sure. And you know, I’m still thinking of the people in our community who are isolating strictly and are nervous with precautions and people who are asking their family to take precautions and their family may not be so willing.
Steve Newmark 12:37
Absolutely. Absolutely.
Zoe Rothblatt 12:38
So you know, I just want to give a shout out and say happy holidays to you, to everyone. But we’re thinking of you and you’re not alone. Steven, we’re coming up on the best part of the show. I have to ask what you learned today.
Steve Newmark 12:50
Well, I learned that according to respondents to our poll, 11% of our folks who are chronically ill are going to continue with their holiday traditions without the restrictions of the pandemic. They’ll be going through the holiday season this year with ways that were the same as pre pandemic. And that was pretty surprising for me.
Zoe Rothblatt 13:07
And I learned about the legal challenges to Biden’s mandate.
Steve Newmark 13:12
Excellent. Well, we hope that you learned something too. We’d love to hear from you about what your holiday plans are. Send your email to The Health Advocates at GHLF dot org, or better yet include a short video or audio clip.
Zoe Rothblatt 13:23
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 13:30
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 13:35
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 13:55
I’m Steven Newmark. We’ll see you next time.
Narrator 14:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 6: The New Phase of COVID
COVID fatigue has set in and there won’t be a big party to announce the pandemic is over. So how do we shift the debate from how to end the pandemic to how to live with it? Plus, what impact does the pandemic have on our mental state and for people living with chronic illness?
“I think the goal at this point is no longer to eradicate COVID. The priority now is to remove it from being the guiding force in all of our lives, says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S2, Ep 6: The New Phase of COVID
SUMMARY KEYWORDS
pandemic, vaccines, mask, virus, felt, steven, protect, vaccinated, people, live, zoe, zune, lives, infection, healthy living, hear, thinking, review, country, advocates
SPEAKERS
Steve Newmark, Narrator, Zoe Rothblatt
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steve Newmark 00:08
I think the goal at this point is no longer to eradicate COVID. The priority now is to remove it from being the guiding force and all of our lives. 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. And I’m 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. So Steven, after our last episode about the public health crisis, when it dropped, I went to go look at the reviews to see what our listeners were saying. Are you ready to hear one? Absolutely.
Zoe Rothblatt 00:51
Okay, so this one is from Tunes Zune, and they were too often we only think about health care when we urgently need it, when we may lose it or when our politicians are fighting about it. This podcast is raising important topics in public health and healthy living that don’t get enough air time elsewhere. More please.
Steve Newmark 01:08
Nice. Glad to hear that review and we will continue doing our best to make these topics easy to digest. Well Tune Zune. Thanks for your view, we invite all our listeners to go to Apple Podcasts to leave an honest five star rating and positive review. So Zoe, now it’s my turn to read a comment. In a recent White House press briefing on COVID, Dr. Fauci said, it is going to be very difficult, at least in the foreseeable future, maybe ever to truly eliminate this highly transmissible virus.
Zoe Rothblatt 01:36
Wow.That’s a very scary reality. And I think about the people we represent, people living with chronic disease who really have felt and continue to feel left behind as society moves on and seemingly unsafe, COVID world.
Steve Newmark 01:49
And maybe that’s where the key issue is. Many have let their guard down and act like the pandemic is over or are debating how to end the pandemic. But maybe we have to start thinking and debating how we live with a pandemic. Looks like you’re learning to live with a panting dog back there. How’s McIintosh doing today? He was just chowing down on a bone and stopped for a little water break. Delicious. That’s everyone’s reminder to stay hydrated. Fair, fair. So back to what you were saying, living with a pandemic. That’s an interesting thought. I guess you’re saying that many have sort of prematurely claimed victory over COVID, especially this summer, when we saw numbers going down. And this led to less restrictions, which what we found out is that’s where the virus thrives. And we saw with the number of cases rising again, shortly after we felt this breath of fresh air. And if we accept that we live with COVID, then we can continue with our precautions and you know, sort of figure out a way to live safely with the virus. And we saw in the recent elections in New Jersey and Virginia, where there were many factors at play, but you can’t help but think that pandemic fatigue played a role. And there was a portion of the electorate that voted against the status quo, Vis-à-vis masks and mandates. Going back to Dr. Fauci’s point, the idea of eliminating the virus is getting further and further away. So we have to find another way. Similar to how we live with seasonal flu and other common colds. Steven, haven’t you felt like we’ve become a bit complacent with the virus? I noticed a lot of restrictions going down in our area and less mask wearing. Yeah, no, absolutely. It feels natural that you can only stay in your seat belt for so long. It’s like an airplane, when the airplane lands, how many people unbuckled before you get to the gate? Yeah. And how many are already at the overhead getting their carry on? Right? It’s like, what are you doing? You’re saving three minutes. It’s like, what are you doing taking the mask off? We haven’t finished yet. It’s the same phenomenon. And it doesn’t matter whether that’s a three hour flight, or a 10 hour flight. It’s that extra like 10 minutes. People are like, No, I’m not doing another 10 minutes. I’m taking my seatbelt off now. I’m taking my mask off now. Yeah, until that big accident happens. Or maybe someone close to you gets COVID, you’re not really in a mindset that you need to keep these protections. It’s easy to seem like you’re just safe until the threat is very real. And I think that this new mindset, you’re talking about, how to live with a pandemic could really help drive innovation for other ways to fight the virus. And in thinking about that, my question is, what could a future with COVID look like? How do we know when we’ve arrived at that okay, point? There’s so many questions there. When we think about daily lives with COVID going forward. Today is the pandemic starting to wind down? Well, by some measures, it appears that way. Infections have fallen in much of our country. Our kids are back at school, most Americans are vaccinated, some of them with booster shots. But a cold weather resurgence is possible. And there are far too many other uncertainties to declare victory just yet. It’s more like a new phase one, in which people are accepting a little more risk and adapting to the reality that the virus will be with us a little bit longer. As one epidemiologist said it’s slowly becoming part of the furniture. That’s a good one. We all have those pieces in our house that have just been lying there forever. Yeah. So ultimately the question is, are we going to wear masks all day indefinitely. Holidays are coming up, those is going to look quite different. Is it always going to be like this? Those are really good questions. And also I was thinking about, we talked about testing a few episodes back, will that be part of our regular lives before you go to an event will you get tested, like you mentioned, the holidays are coming up. Will we always have to go in with this concern and layers of precaution. And for me thinking about a dream scenario of living with COVID. And you know, when we’ve arrived at that point, I’m thinking back to the beginning of the pandemic, when everything was in shortage. In this dream scenario, I imagine we’d have enough supplies in the hospital, enough oxygen, protective gear for everyone and our health care professionals. Vaccines widely available and access to treatment options for COVID. We’re definitely moving towards that point where treatment options are becoming more available. At home treatments look like they’re going to become the norm as well. Another first step that folks could take is still the masks. Get this, a recent New York Times article quoted a model that projected if 95% of Americans wore a mask in public, there would be roughly 56,000 fewer deaths by February 1, 2022. Well, that’s huge. That’s that’s a lot of lives that could be saved, and I always think about how in other parts of the world people mask up during flu season, and maybe that’s what it will be from now on just like, we get a flu shot annually, we would get a COVID shot and mask up to keep ourselves and each other safe. Yeah, I’m definitely masking up during flu season. What’s the harm? I don’t wanna get flu. I don’t need that. I’ve got enough going on. I know me too. Nobody in my family got sick last year, because we were all in masks. I don’t think anybody in the country got sick from flu last year. I think the rates were one of the lowest ever because, A we were in you know, still in the semi quarantine last winter. When we were outside, we were wearing in the masks. Our allergies came in this spring. And we had completely forgot what it was like to have a stuffed nose and headache, thankfully, but I definitely plan to mask up. Yeah, it can’t hurt. And also on the other side, the flip side of that is if I have a sniffle I’m going to mask up to protect people around me, I still don’t want to get other people sick. So I think I’ll take a few more precautions to help others That’s really poignant in our community, because even just a common cold is really brutal when you have a chronic illness and you take immunosuppressant medication. So it really does help when people stay home and mask up and protect the spread of of these conditions. Yeah, I think the goal at this point is no longer to eradicate COVID. The priority now is to remove it from being the guiding force in all of our lives.
Zoe Rothblatt 07:30
And I guess to do that, we have to face the really difficult fact that COVID is going to be with us forever, which is a really heavy weight on our community. And I’m thinking that aside from masks, we also have our other tools, vaccines. And going back to the original goal of vaccines, it was to prevent severe illness and death. And then as clinical trial data came out, we saw that the vaccines were extremely effective even against having a symptomatic infection.
Steve Newmark 07:56
Right when we saw that it felt at least on a local level, that we could eliminate COVID like we have for the most part with mumps, or measles in the United States. That was a hopeful moment. But alas, that dream is gone. And the variant came in and these lessons some of the protection from the vaccines. And don’t get me wrong, I mean, the vaccines still protect against serious illness, which is the most important thing here. But for our conversation, I just want to highlight that herd immunity, which is when there’s a certain percentage of the population immune to infection and the infection stops spreading through the community. That concept of herd immunity seems out of reach for COVID. Exactly. The virus continues to circulate. So we have to find a way to live with it. And that’s not easy. I know we’re all feeling fatigued from living in it and the stress of an unending pandemic. Yeah, I’m definitely feeling that stress. I actually saw an article about that feeling you’re describing and they called it pandemic flux syndrome. And it’s this emotional impact of this phase in the pandemic and the realization that we aren’t going to have the big, “ah the pandemic is over” moment. Yeah, I know I wanted that party. I want my money back. What the heck, man. So aside from figuring out the logistics of living in a pandemic, and getting the virus under control, as individuals, we have to get our emotions and our mental health state in a better place too. Our bodies are not designed to live in stress for long periods of time, and we need to learn how to cope. And this stress is really palpable in our community. I’ve heard from many patients that are still very isolated. And I think that if we move forward with the idea of living in COVID, and using precautions, finding a way to mitigate this huge threat, it could relieve a lot of that stress. And we’re constantly making strides to get there. In good news, millions of doses for the Pfizer COVID-19 vaccine are being shipped from the country’s facilities to distribution centers all across the country. The FDA and CDC have signed off on the Pfizer vaccine at 1/3 dosage for children ages five to 11 Excellent news. This means that It sounds like McIntosh concurs. Yep, and this means that 28 million children will be newly eligible. And this is extremely important because children are making up a disproportionate number of new COVID-19 cases. So we really want to get them protected. Yeah, this is great news, of course. My own children are six and nine and I will be first in line if I can to get them vaccinated. I cannot wait. Steven, do you have any concerns about vaccinating your children? None at all. Well, I’m certainly not surprised, there, given all our conversations. Look, I get it, I understand that folks who are not steeped in scientific literature, who don’t follow these things the way we do, might have some apprehension. But for everything I read about vaccines and kids, it comes down to two things. Number one, the effects of COVID are worse than the worst side effects of the vaccines. And number two, it’s our responsibility to vaccinate ourselves to protect the most vulnerable. My six year old will likely be okay if she were to get COVID. But what about the 20 other kids in her class. I can’t let my daughter act as a carrier for one of them. This idea that there’s some kind of a long term effect of having a vaccine, it just doesn’t bear out. We’ve had vaccines for hundreds of years, there are side effects that occur locally, there are side effects that occur in short order within a few days. And for the children, it’s been well over a year of studies for these vaccines, and nearly a year of when the vaccines had gone out to the general public. That’s a really good point, it goes back to we’re in this for the community and for each other, it’s easy to get caught up in the big flashy news stories. But when you break it down, we’ve seen the data that these are safe. And it’s a really good reminder that vaccines are about more than just personal protection. And they really are about protecting our society as we you know, move forward out of COVID. Yeah, as we discussed, we missed the window to completely eradicate COVID-19. But we still have to get as many of us vaccinated to protect our society. Yep. And on that note, Steven, our time is winding down. So you know what that means. I’m gonna ask you what you learned about today? Well, I learned about pandemic flux syndrome, which for me, normalizes what I’m feeling at this stage of the pandemic. And I learned that while we still have many questions about COVID, and our response, we also have many answers from the data that can help us move forward. We hope that you learned something too. We’d love to hear from you about vaccines and about pandemic flux syndrome or whatever else is on your mind. Send your email to the health advocates at GHLF dot org. Or better yet, include a short video or audio clip. And who knows whatever you share, may be 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. That’s the health advocates at ghf.org.
Zoe Rothblatt 12:39
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.
Steve Newmark 12:57
I’m Steven Newmark. We’ll see you next time.
Narrator 13:02
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 5: Public Health Under Attack
A sad consequence of the pandemic is the erosion of trust in public health officials. Physical threats, cuts in funding and changes in laws have led to an exodus of qualified public health workers in the United States. In this episode, we explore how this crisis goes beyond the pandemic and what this means for you as someone living with chronic disease.
“Public health departments have been at the forefront of delivering vaccines that helped eradicate smallpox and polio. Public health officials are responsible for so much more than the direct individual being,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation.
S2, E5: Public Health Under Attack
SUMMARY KEYWORDS
public health, public health officials, zoe, vaccines, threat, community, public health departments, people, pandemic, polio, health, tuberculosis, laws, steven, tb, health officials, folks, underlying conditions, important, restaurant
SPEAKERS
Steve Newmark, Narrator, Zoe Rothblatt
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steve Newmark 00:08
Zoe, how often do you eat out in a restaurant that has a C or a B?
Zoe Rothblatt 00:11
Never.
Steve Newmark 00:12
Never?
Zoe Rothblatt 00:12
I’m even skeptical of a B.
Steve Newmark 00:14
B? Come on. If there’s not an A, I’m out. I’m out. I need my health department checking that place out early.
Zoe Rothblatt 00:20
Exactly.
Steve Newmark 00:22
Welcome to The Health Advocate,s 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 to live your best life. So Zoe, it’s great to see our listeners share their comments about this podcast. Ready to hear one?
Zoe Rothblatt 00:49
I think so let’s hear it.
Steve Newmark 00:50
Great. Lynn 1911 says, this podcast was super interesting and just the right length. I was able to quickly get clear and concise answers to the many questions I had about vaccines, boosters and antibody tests.
Zoe Rothblatt 01:03
Wow. Thanks, Lynn, for writing into us and these great comments. We hope that we provide some answers during this time of confusion.
Steve Newmark 01:11
Lynn, thanks for your review. We invite all our listeners to go to Apple Podcasts and leave an honest five star rating and a positive review. And wherever you’re listening, click the subscribe button so you never miss an episode.
Zoe Rothblatt 01:22
Yep, I’ve subscribed so I never miss us too.
Steve Newmark 01:24
Haha, terrific. Let’s get into this episode. Today we’re going to talk about a looming public health crisis.
Zoe Rothblatt 01:30
You mean COVID, the one that’s already here?
Steve Newmark 01:32
No, not COVID A different public health crisis.
Zoe Rothblatt 01:35
Okay, tell me more, Steven.
Steve Newmark 01:37
Well, one sad consequence of this pandemic is an erosion of trust and public health officials and worst, there are threats and defunding and changes to laws that have had led to an exodus of highly qualified public health workers across this country. And this is particularly meaningful for us, you and I, Zoe have dedicated ourselves to public health. It is our careers, but really it is our passion.
Zoe Rothblatt 01:56
That’s true. It really does stem from a point of passion for me. I knew from the age of 15 that I wanted to take the little knowledge I had about public health, learn more and be a force to help make our world a better place. And, you know, since my diagnosis with Arthritis and Crohn’s, I’ve really come to see from the patient perspective how hard having a health condition is and how much public health matters. I got my Master’s in public health and work at GHLF to help patients like me live their best lives.
Steve Newmark 02:23
And similarly, I care deeply about public health. I’ve done it in the courtroom. I teach it at universities. And of course, I work here as a fierce advocate at GHLF.
Zoe Rothblatt 02:32
And bringing it back to this crisis that you’re talking about. Public health is under attack and in some cases, literally. There are stories of public health officials who’ve been threatened, followed home all because of promulgating rules to help combat the coronavirus. I know I feel lucky, I haven’t felt these threats, but they’re very real. And this fallout could be for decades to come.
Steve Newmark 02:53
It’s crazy. One of the few positives of this whole pandemic is a dedication to public health is a belief in public health and the power of what public health officials can do, the power of what a community can do when we come together to fight for ourselves. And all of that is not just gone. But it’s actually gone beyond that and gone in a different direction.
Zoe Rothblatt 03:10
Right. I came into the pandemic saying nobody knew what my degree in public health was before. Now everybody does.
Steve Newmark 03:18
Right, now people are probably scared to get it.
Zoe Rothblatt 03:20
Exactly.
Steve Newmark 03:21
Zoe, get this a new review by the New York Times shows that local public health departments are less equipped to confront a pandemic now than at the beginning of 2020. That is startling.
Zoe Rothblatt 03:30
That is startling. You’d think we would have had some lessons learned and be extra equipped to confront a pandemic.
Steve Newmark 03:37
No, it went the other way. Because despite the pandemic, public health departments actually lost employees over the past 18 months. Even worse, there have been a host of new laws that limit the powers of state and local health officials.
Zoe Rothblatt 03:49
Like how many new laws?
Steve Newmark 03:51
Over 100.
Zoe Rothblatt 03:52
Wow.
Steve Newmark 03:53
And this undermines everything from flu vaccination campaigns to dealing with measles outbreaks.
Zoe Rothblatt 03:58
Oh, geez. And we saw a huge measles outbreak a few years ago in New York City. So you know, this kind of stuff is a real threat. It’s important.
Steve Newmark 04:06
Yeah, some of the folks that are replacing these public health officials are, let’s just say they’re not quite as public health friendly. In Idaho for example, commissioners appointed a new physician representative in Boise, who refers to COVID vaccines as, quote, “needle rape.”
Zoe Rothblatt 04:20
Wow, “needle rape.” That’s shocking. Those are really strong words to be using.
Steve Newmark 04:24
Yeah, it’s gross. It’s just gross. There are also new laws in 32 states that restrict the ability of health officials who impose mask and vaccine mandates, close businesses or even conduct contact tracing
Zoe Rothblatt 04:35
All this that you’re mentioning is COVID focus, but we’re also feeling this in other public health areas. We’re seeing a spike in drug overdoses, sexually transmitted diseases and even lead poisoning. You know, in Texas, requests for exemptions for the usual suite of immunizations has skyrocketed, not just demands against COVID vaccines, but just general vaccines.
Steve Newmark 04:55
And there’s definitely a fear that we’re going to see less vaccinations for your more traditional suite of vaccines, as you had just mentioned. I mean, it’s crazy to think that our country has so turned against the idea of collective good. I mean, mandates and mobilizations have been part of America since before we were a country. Colonists issued quarantine laws and fines for disobeying them in the 1700s. The pillar of public health framework is about doing the greatest good for the greatest number of people, really thinking about how decisions will affect the well being of the community.
Zoe Rothblatt 05:27
I really liked that you brought up, you know, public health framework and about how it’s for the community. Public health departments have been at the forefront of delivering vaccines that helped eradicate smallpox and polio, a threat that we often don’t think about today even and prior to that public health officials cleaned our streets, they’re responsible for so much more than just you know, your direct individual being but really about the community. Cleaning our sewers, to make our water drinkable and stop the spread of disease through all these different avenues.
Steve Newmark 05:56
Yeah, they, they inspect our restaurants to make sure that there’s not rats running around. They play a huge role, our public health departments. And one example would be in the 1980s, when we saw a rise in HIV and also in tuberculosis cases. Tuberculosis or TB is a disease caused by a bacteria that are spread from person to person through the air, just like COVID. Its reemergence pose a threat to our public health, especially because tuberculosis can become antibiotic resistant. That means that the bacteria causing TB stops responding to the drugs that you take, and you can no longer kill the bacteria causing the infection.
Zoe Rothblatt 06:30
Great example to bring up Steven, there’s actually a lot of parallels between those TB rise and COVID that we’re seeing today. In the 80s, it was primarily impacting those who are vulnerable, meaning people who are sick and the poor, people with underlying conditions. And this began to pose public health questions like how should we respond to a disease that can spread through these vulnerable communities? How do we monitor and make sure the disease isn’t spreading and that people are following treatments so TB doesn’t become antibiotic resistant and an even bigger threat. And they were really tackling the same questions that we are today, when you think about it, the issue of intrusiveness and upholding individual rights or the community when you’re facing a threat, especially a threat that impacts the most vulnerable in our community. We’ve had a lot of discussions, you and I and and with patients in our community, about COVID and how our community who lives with chronic conditions are at high risk for complications and hospitalizations. So Zoe, was there a lot of pushback in the 1980s to some of the public health initiatives? You know, there was because you have to monitor people taking medication to make sure that it doesn’t become antibiotic resistant. And people were saying, Well, you know, why should you expect that somebody isn’t taking their medication? Do you have the right to say we’re going to watch you take it. It goes back to the pillar of public health that we have to do the greatest good for the greatest number of people. And we should be surveying and watching to see that people are following these public health measures. And I think if cases have been on the decline since 1992, you can really see as an example of public health coming together.
Steve Newmark 08:04
So obviously tuberculosis hasn’t been a large threat in our country for over 30 years. That would be an example of a successful public health response. Right?
Zoe Rothblatt 08:12
Yeah. And what’s interesting here is that federal agencies worked with state and local health departments, and they were able to improve their resources for tuberculosis prevention and control programs so that we were able to really tackle this at a local level.
Steve Newmark 08:27
You know, the great irony of successful public health campaign is that the public after a while, no longer sees the successes of it.
Zoe Rothblatt 08:34
Interesting. Explain that more.
Steve Newmark 08:36
One is the Ebola virus, if you remember, it was a little less than a decade ago that there was a fear of Ebola virus coming to our borders, there was a national as well as local response to quarantining individuals coming from certain countries, inspecting folks who were traveling internationally. And ultimately, we only wound up with a handful of cases in the United States. That was completely successful. But it’s not something that folks talk about much outside of the public health world.
Zoe Rothblatt 09:01
Yeah, definitely a forgotten pass, especially with COVID on our minds, that seems like such a minor threat. But it was a really big deal at the time.
Steve Newmark 09:09
It was huge. You know, another example that folks are more familiar with is the eradication of polio, because it happened in an era where folks are still around to remember what it was like, when polio was running rampant through communities. The vaccine was developed, people, unlike today, people ran out to get those vaccines. And within a few decades, polio had been completely eradicated from our country yet today, a lot of folks who don’t remember what our country was like when polio existed are more resistant to the vaccines.
Zoe Rothblatt 09:40
It’s interesting you bring up polio, that’s something I learned about in school or just you know, family stories from my parents who would talk about it but it was just this weird word to me and seemed like so out there that you could get this thing that I don’t even know about. I didn’t get vaccinated for it’s not like chicken pox, you know, what is that threat and we really under appreciate how nice it is to not know what that threat is.
Steve Newmark 10:03
Absolutely. I actually read my kids very regularly now a book about Jonas Salk and the polio vaccine. I actually learned from my kids book that Jonas Salk also developed the first flu vaccine. I didn’t know that. So I think it’s important, hopefully, other parents like me, that this generation will start teaching their kids about the importance of vaccines. But one thing I always stress to my kids, I actually just got them their flu vaccine yesterday. I always stress to them, they’re doing it not just for themselves, but also for the rest of the community, and particularly for folks who are unable to get vaccinated.
Zoe Rothblatt 10:33
That story reminded me that in my sixth grade science fair, we had to do something about, you know, someone that invented, created something, and my mom said, why don’t you do it about the smallpox vaccine? And I said, what’s that? She said, Well, Edward Jenner created this vaccine, smallpox, and none of my peers knew about it. And it was really important for me to stand up at the Science Fair and say, like we’re saying with polio, we don’t have this as a threat today, thanks to this man who created what’s known as the smallpox vaccine.
Steve Newmark 11:02
We talked a little bit before about public health’s mission being about the community. But in recent years, we’ve seen a shift as we have overcome many of these infectious diseases that we’re talking about, smallpox, measles, whooping cough, the focus of public health turned more to individual elements, such as heart disease and cancers.
Zoe Rothblatt 11:19
Right. That’s a really good point, Steven, there’s less of this collective action with these non communicable diseases such as the ones you mentioned, you know, for heart disease, each individual follows their own course, has their own genetics to worry about. It feels less burden on society to address those issues, but rather on yourself to keep up with your regular medical appointments, your medications, your exercise, your diet, whatever it may be, is really on you.
Steve Newmark 11:43
And as a result, the collective need to work together to battle an invisible invader seems almost lost. Just getting back to what you were talking about earlier with some of the issues that public health officials are dealing with. In California, an official resigned after a resident announced their home address at a public meeting. Multiple officials have reported phone messages, including threats. In one county in Washington State, the sheriff, the law announced that his office would arrest anyone enforcing health restrictions that he alone deemed unconstitutional.
Zoe Rothblatt 12:13
Very scary that people have this power. It’s scary as a public health professional, and it’s scary just as a regular citizen living in this world. When you think about it, what are some of the potential consequences of this behavior?
Steve Newmark 12:26
Well, the consequences some of them we’ve seen, it’s led to less enforcement during this pandemic, thereby exaserbating it. For other infectious diseases that come our way, it’s going to be harder to battle. With less personnel and less experienced personnel in public health departments, it will be harder for departments to focus on other public health crises such as obesity, the opioid crisis and other issues that arise.
Zoe Rothblatt 12:46
Well, Steven, that brings us to the big question, what do we do about this?
Steve Newmark 12:51
Advocate, our show was called The Health Advocates.
Zoe Rothblatt 12:53
Right? Right. I should have realized that one.
Steve Newmark 12:57
We got to make sure local health officials have our support. Tthey keep us safe, they ward off disease. You know, like I said, they check our restaurants to make sure that they don’t have any rats in them. Without local health departments, we’d be a lot sicker.
Zoe Rothblatt 13:08
That’s true. And I would dine out very less frequently if I knew there was a risk of rodents in the restaurant.
Steve Newmark 13:14
Yeah, we live in an area, Zoe and I, each restaurant has a rating from A, I don’t know how high they go. But the lowest I’ve ever seen is C, I think after that they shut you down. But Zoe, how often do you eat out in a restaurant that has a C or a B?
Zoe Rothblatt 13:26
Never.
Steve Newmark 13:26
Never?
Zoe Rothblatt 13:27
I’m even skeptical of a B.
Steve Newmark 13:29
B? come on.
Zoe Rothblatt 13:30
And it’s also pasted on the window in like a standard paper size for everyone to see.
Steve Newmark 13:35
Yeah, if there’s not an A, I’m out. I’m out. I need my health department checking that place out early.
Zoe Rothblatt 13:40
Exactly. And when we think about the patients we represent who are vulnerable living with underlying conditions, the importance of these public health programs is just underscored so much. Health is multifaceted and as we learned in public health, and discussed today, there’s so much more that goes into your health than just your genetics. The term is social determinants, but these are factors like your socio economics, your physical environment, and your own health behaviors and the health behaviors of those around you. We really have to focus on these other measures. And that’s where public health comes in.
Steve Newmark 14:12
So we have to keep fighting and reminding people of how public health departments have been helping our community since long before COVID. And on the micro level, if you have an opportunity, if you come across a public health official, just simply say thank you, be the opposite voice of those folks out there yelling at these public health officials.
Zoe Rothblatt 14:29
Agreed and ask us questions. We love to tell people about public health and public health programs. I think it’s important for people to know and if you have questions, it’s important to ask.
Steve Newmark 14:39
Absolutely.
Zoe Rothblatt 14:40
Well, Steven, we’re coming up on my favorite part of our show. I’d love to ask you what you learned today.
Steve Newmark 14:45
Well, I learned that you want to go into public health professionally since you were 15 years old. So kudos to you for following through on that goal.
Zoe Rothblatt 14:52
Thank you and another personal learning. I learned from you how you can be a model parent and teach your kids about public health programs and really instill from a young age how important caring for the community is.
Steve Newmark 15:04
Well, thank you Zoe. And we hope you learned something too. We’d love to hear from you about public health generally or any other topic that’s on your mind, send you an email to The Health Advocates at GHLF dot org. Or better yet, include a short video or audio clip.
Zoe Rothblatt 15:20
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 15:26
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week. That’s The Health Advocates at GHLF dot org.
Zoe Rothblatt 15:34
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.
Steve Newmark 15:51
I’m Steven Newmark. We’ll see you next time.
Narrator 15:57
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 4: A Dose of Politics
Congress is debating two major pieces of legislation that could have an impact on patients, especially ones with chronic illness who rely on prescription drugs. We dive into the fray to examine the tradeoffs of negotiating lower drug prices.
“Obviously we want it all. We all want cheap drugs but we also want more advances. Ultimately you cannot have everything. Drug prices seem to be an easy target because unlike, say, the prices of cars, they include products that can save one’s life,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S2, E4: A Dose of Politics
SUMMARY KEYWORDS
drugs, patients, lower drug prices, booster dose, zoe, vaccine, bill, democrats, include, advocates, research, steven, development, legislation, medications, estimated, review, question, healthcare, cost
SPEAKERS
Steve Newmark, Narrator, Zoe Rothblatt
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steve Newmark 00:09
Obviously, we want it all. We all want cheap drugs, but we also want more advances. Ultimately, you cannot have everything. Drug prices seem to be an easy target because unlike say the prices of cars, they include products that can save one’s lives. 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.
Steve 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.
Zoe Rothblatt 00:44
So Steven, as we’re starting this new series, it’s really exciting to read a review. Are you ready?
Steve Newmark 00:50
Absolutely.
Zoe Rothblatt 00:51
One of our listeners, Bobby said talking about healthcare’s often boring or complicated. These hosts make it interesting and accessible. Can’t wait for more episodes.
Steve Newmark 01:00
Wow. Excellent. I guess we got to do some more episodes.
Zoe Rothblatt 01:03
Yeah, we’ll keep it interesting and accessible. As always today, Bobby, thanks for your review. We invite all our listeners to go to Apple Podcasts leave an honest five star reading and positive review.
Steve Newmark 01:14
Excellent. So as we get into today’s episode, Congress is debating President Biden’s agenda. There are two large pieces of legislation.
Zoe Rothblatt 01:21
I’m hoping you can break this down, Steven for me and everybody listening because there’s a lot of news going around. It’s confusing. I’m hearing all these terms. And I want to understand what this means for patients, especially people living with chronic disease.
Steve Newmark 01:35
Sure. So first, as I said, there are two pieces of legislation. The first is bipartisan, it’s sometimes referred to as the bipartisan infrastructure framework or the BIF. And this is a deal that Democrats and Republicans have struck, and it passed the Senate in August with all 50 Democrats and 19 Republicans. It’s currently awaiting a vote in the House. This is an infrastructure bill that deals with roads, broadband, public transportation, things of that nature. The second piece of legislation is called sometimes the reconciliation bill, sometimes it’s called build back better, it’s often even just referred to as its current costs, which is $3.5 trillion over 10 years.
Zoe Rothblatt 01:45
That’s a lot of money.
Steve Newmark 02:13
It is a lot of money. And in Washington, it’s always about the money. This bill for arcane procedural reasons has to be budget neutral. So if it’s going to cost $3.5 trillion, it also has to save the government $3.5 trillion over that same 10 year period.
Zoe Rothblatt 02:30
Okay, and what kind of things go into this bill? What are we spending this money on?
Steve Newmark 02:35
Well, there’s some public health programs, there’s healthcare, there are plans to address climate change, education, and childcare. Those are some of the programs that are being proposed that’s going to cost money.
Zoe Rothblatt 02:46
So how do we make this budget neutral?
Steve Newmark 02:48
One avenue that Democrats are considering is to allow Medicare, the government funded health care program, to negotiate lower drug prices?
Zoe Rothblatt 02:57
Okay, so I think I’m understanding if Medicare is able to lower drug prices, this would give more money for other programming in the bill that you mentioned, like climate change, education and all those programs. Right?
Steve Newmark 03:10
That is it. But is it good policy? Will this help patients?
Zoe Rothblatt 03:13
That’s the question, what the bill does is that
Steve Newmark 03:16
Zoe, do I hear Macintosh in the background?
Zoe Rothblatt 03:18
Sorry, I think the dog was sneezing. He’s very interested in in the plans for this bill. So let’s get into it. What would allowing Medicare to negotiate prices mean for patients? Supporters of the proposal simply say this is our taxpayer dollars, and it’s estimated to save 450 billion over 10 years. So we should have the ability to negotiate lower prices. And this is used to appeal to the public that talk about large profits of pharmaceutical companies. And then on the flip side, there’s researchers that say that reduced prices would mean reduced profits, therefore leading to less funding for research and development in the pharmaceutical industry. And that means that if there’s less revenue to be had, there will be less incentive to invest in certain medications.
Steve Newmark 04:02
There’s no question that there is some trade off from lower prices. Nearly all analysts agree this means that the industry would spend less money on research and development. Fewer drugs would be approved and those losses would increase over time. Although estimates range widely because there’s so much uncertainty in the drug development process. The nonpartisan Congressional Budget Office estimated in August that legislation similar to what the House Democrats have proposed would result in fewer new drugs, specifically that eight fewer new drugs would be introduced in the US from 2020 through 2029 and about 30 fewer new drugs over the following decade. That’s about a 10% drop in new drugs. We’d normally expect 300 drugs to be approved every 10 years at the current rate of approval. Over the past decade, the Food and Drug Administration has approved anywhere from 22 to 59 new drugs each year. One concern that patients raise is that if drug makers pare back their research, treatments for rarer diseases that affect fewer people will receive the first cutbacks.
Zoe Rothblatt 05:00
Listening to you talk, there’s nowhere like the United States of America for patients in need of medications. Americans have this unparalleled access to cutting edge treatment. And, of course, the reason for our access is that we pay much more for treatments. And a lot of that money that we pay goes into research, about 25% of revenue goes to research and development meaningfully higher than the amount in other innovative industries.
Steve Newmark 05:23
Right. Plus at least 40% of the world’s pharmaceutical research and development originates in the United States. Perhaps most importantly, for American patients like us, we get the earliest access to the latest drugs. The US is where novel treatments debut accounting for 65% of global sales for newly launched medications. Research has consistently linked drug companies revenue to research and development spending and to new drug approvals.
Zoe Rothblatt 05:47
All of this conversation brings us to the big question is should we be rooting for lower drug costs? And I think that while this question has been analyzed for years, it’s important to put context with it. The fact that when you’re chronically ill, there’s a cost burden every month, or however often you take your meds and this is for the rest of your life so long as there’s no cure, which there isn’t cures for most chronic diseases, you’re living with it. So you’re continually strapped with these high costs in order to take care of yourself. And on the other hand, as patients, we rely on the innovation of new medicines, especially because many patients in our community go through a bunch of trial and error before finding the right treatment. So we definitely want options out there. It’s a tough situation.
Steve Newmark 06:30
Look, obviously we want at all, we all want to cheap drugs, but we also want more advances. Ultimately, you cannot have everything. Those of us who have been blessed to have access to medications that have literally been life altering, and this includes me, are naturally wary of any change in the current reimbursement structure. Drug prices seem to be an easy target because unlike say, the prices of cars, they include products that can save one’s lives.
Zoe Rothblatt 06:53
Right. But we also want to be sure that everyone has access and that means everyone who needs a drug can afford one. Ultimately, it’s more complicated than just lower drug prices. This issue is a complex one and it’s hard to grasp from just news headlines.
Steve Newmark 07:06
Just look at Moderna. They’ve been working on their mRNA technology in vaccines for over 10 years before the COVID pandemic. And dare I say we’re all grateful for their investment.
Zoe Rothblatt 07:16
And speaking of we have some fresh news from the FDA regarding boosters. We can maybe mix and match and boosters will likely be available soon for all three vaccines. Recently, an FDA advisory panel recommended a booster dose of the Moderna COVID-19 vaccine at half the dose of the initial shot to be given at least six months after the initial two dose to eligible groups, which includes those who are at high risk of severe COVID. The Johnson and Johnson COVID vaccine booster has a different recommendation from the two mRNA vaccines, Pfizer and Moderna. The panel recommended a second shot for everyone who received the Johnson and Johnson vaccine originally and there’s also talk that if you got the Johnson and Johnson to maybe get one of the mRNAs next where the mix and match comes in. So just like the Pfizer conversation, this panel’s recommendation will now go to the FDA to decide whether to issue an emergency use authorization for the booster dose and to CDC to clarify which groups should be eligible. So you know, we’ll keep you updated on The Health Advocates as we get the latest news. So Steven, as always, what did you learn from our conversation today?
Steve Newmark 08:32
Well, I learned that congressional procedures can be a bit weedy but necessary to grasp if you want to understand how the sausage gets made in Washington, and more important if you want to influence how the sausage gets made.
Zoe Rothblatt 08:43
And I learned that policies aren’t necessarily black and white, and we need to dive into issues with a critical lens before marking them as doing their job or not.
Steve Newmark 08:53
We hope you learned something too. We’d love to hear from you about drug pricing or anything else that’s on your mind. Send your email to The Health Advocates at GHLF dot org. Or better yet, include a short video or audio clip.
Zoe Rothblatt 09:05
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 09:10
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week. That’s The Health Advocates at GHLF dot org.
Zoe Rothblatt 09:18
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 podcast, give us a rating and write a review on Apple Podcasts and subscribe to us wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 09:34
I’m Steven Newmark. We’ll see you next time.
Narrator 09:39
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 3: Mandates and Personal Liberties
Vaccine mandates are taking over the political landscape in upcoming elections. But are vaccine mandates a matter of personal liberties and if so, whose liberties are more important: those vaccinated or those who refuse to be?
“I’ve been carded at a restaurant for my vaccine and I feel so much safer and I think that can bring a lot of comfort to people in our community knowing that you’re going into a building that’s safe and if you are going to sit down at a restaurant and if the mask comes off, you know that those around you are vaccinated so the spread is lower,” says co-host Zoe Rothblatt.
S2, E3: Mandates and Personal Liberties
SUMMARY KEYWORDS
mandate, vaccinated, vaccine, people, required, healthcare workers, states, restaurant, hear, happening, personal liberty, jacobson, zoe, issue, tested, texas, pandemic, votes, testing, religious exemption
SPEAKERS
Steve Newmark, Narrator, Sarah Rene, Zoe Rothblatt
00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
I’ve been carded had a restaurant for my vaccine and I feel so much safer. And I think that that can bring a lot of comfort to people in our community knowing that you’re going into a building that’s safe. And if you are going to sit down at a restaurant and the maks comes off, you know that those around you are vaccinated, so the spread is lower.
Steve 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 00:39
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 better informed decisions to live your best life.
Zoe Rothblatt 00:50
So Steven, it seems like encouraging people to get vaccinated against COVID isn’t quite cutting it at this phase in the pandemic. And now we’re turning to what’s known as vaccine mandates.
Steve Newmark 01:02
Yes, we’re definitely past the carrot phase and into the stick phase. In September, President Biden announced a big push to get American workers vaccinated through a mandate requiring that companies with more than 100 workers require vaccination or weekly testing. You heard of the Occupational Safety and Health Administration, OSHA, to draft a new rule for this. This would cover about 80 million workers.
Zoe Rothblatt 01:24
In my mind, I don’t know if that’s really a mandate because it’s giving the option of get vaccinated or as an alternative to get tested weekly. So I think maybe this is a good step in the right direction to say, Okay, we’re not full for saying mandate but we’re giving this gradual push towards getting people vaccinated, which would be really important because I saw that as of recently 66% of people 12 and older in the US have been fully vaccinated. That sounds pretty good 66. But it’s really a lower figure than many other countries have achieved. I’m wondering what you think of this mandate coming from the White House. How are states reacting?
Steve Newmark 02:05
Turning to the states, in Texas Governor Greg Abbott issued a broad executive order that bars virtually any vaccine mandate in the state. And that goes for private employers, which had been exempt from previous edicts against the mandates. Other states are starting to follow suit as well, barring such mandates in private businesses. The reactions, particularly from folks who are still not vaccinated, particularly from certain states has been, let’s just say less than stellar. And I think some of that may be some salesmanship. You know, rather than call it a vaccine mandate, they could have called it a testing mandate with an opt out if you decide to get vaccinated. That might have sold a little bit better.
Zoe Rothblatt 02:41
Oh, yeah. You should be marketing for these rules.
Steve Newmark 02:45
Yeah, my marketing guru is not quite there. But that’s what it is. You’re not required to get the vaccine. But you are required to at least take some precautions to help your fellow workers and to help your fellow American citizens ultimately, and that’s either by showing a negative test once a week or having the vaccine itself.
Zoe Rothblatt 03:02
From what I understand the Texas order will probably go to the court or maybe it’s already in the court, as did the ban on masks. So we saw earlier in the pandemic, courts to usually uphold these vaccine mandates. And that’s because it isn’t just you and your rights, but you’re putting other people at danger. Something that we learned in foundations of public health is this court case called Jacobson and Massachusetts, where the state said, if you have to get vaccinated against smallpox or there’s a fine at that time, it was $5, which may sound small today, but it was a pretty hefty fine at the time. And this man Jacobson refused to get vaccinated. So he was fined and there was a question about did this violate his personal liberties? And what the court ended up saying is that no, because of its for the public good, it’s not violating your liberty because it impacts others. And I think it’s interesting to look at cases like this to say, we’ve been having this conversation for a long time and there is this blueprint for us to work with.
Steve Newmark 04:01
I always like to remind everyone that George Washington instituted the first mandate for his troops in the Revolutionary War. We lost more troops disease in the Revolutionary War than to actual casualties of warfare itself. But what you mentioned is the idea of personal liberty. It’s hard to exercise your personal liberty, when exercising your personal liberty could put you in a danger of public health, particularly for the patients that we represent, chronically ill patients.
Zoe Rothblatt 04:28
Yeah, that’s so true. I remember earlier in the pandemic, with masks, many patients in our community were saying, you know, my life is just as valuable as yours. And that goes back to this personal liberty thing. You can’t just decide, I’m going to do something that’s going to harm others. It has real repercussions for many people, especially people who are immunocompromised, that you know, are high risk for complications or hospitalization from COVID.
Steve Newmark 04:53
Absolutely. You can’t just drive your car 100 miles per hour on the freeway, you can’t drive under the influence of alcohol. We have laws for that, because while it is your personal freedom to make a decision to do that, your freedom to drive intoxicated is infringing upon my freedom to drive in a safe environment, and but you’re putting my life at risk.
Zoe Rothblatt 05:12
That’s so true. The more I think about it, the more we have these in everyday life, you know, even with the car, just you wear a seatbelt to protect yourself, people in the car, it’s just so interesting to think about it on a basic level. And we go through the motions every day. And often we don’t stop to think about how much we’re doing to protect others.
Steve Newmark 05:33
Turning back to Texas, that it was a Texas hospital over the summer, Houston Methodist, which was one of the first large healthcare facilities in the country to enforce a mandate when more than 150 staff members were fired or forced into resigning. It’s a good reminder, the anti mandates side be loud, but not necessarily in the majority.
Zoe Rothblatt 05:52
That’s true. So Texas was really setting an example from the front. And now it seems like leadership is maybe taking a step back from that example. But we shouldn’t just put all of Texas in into one box, maybe. I was gonna say the next question from here is, are these mandates working, whether it’s testing or vaccines, what’s really going on? And I think that we can look to our own state for this answer. We’re both in New York right now. And New York recently required healthcare workers to get vaccinated. I actually was chatting with my friend who’s in med school out on Long Island and the hospitals there since this mandate came out were requiring the workers to get vaccinated or get tested in the meantime, while you wait to be fully vaccinated, right, because you got the first vaccine and up to wait a few weeks for the next one. And then two weeks after that you’re fully vaccinated. So there’s been testing in the meantime, and there’s been these huge lines of people getting tested as this rolls out. And it seems like this is really bolstering action. If there’s huge lines of people getting tested and lining up to get vaccinated, it seems like yeah, in my opinion, the vaccines are working when we look at what’s happening.
Steve Newmark 07:03
And these issues that you’re raising, these mandates, they could really shape other states responses. In New York, Rhode Island, Maine, Oregon and the District of Columbia healthcare workers must get vaccinated in order to remain employed. California and New Jersey, Pennsylvania, Maryland and Illinois, workers have the option to be tested regularly if they choose not to get inoculated. Here in New York City, teachers and healthcare workers cannot opt out of a vaccine. And patrons of gyms and restaurants must offer proof of inoculation to enter.
Zoe Rothblatt 07:32
It’s interesting that you brought up that you have to bring a proof to enter a gym or restaurant. I’ve been carded at a restaurant for my vaccine, and I feel so much safer. And I think that that can bring a lot of comfort to people in our community knowing that you’re going into a building that’s safe and if you are going to sit down at a restaurant and the mask comes off, you know that those around you are vaccinated, so the spread is lower. So what’s happening recently is that originally this New York mandate excluded religious exemptions, but then just recently, a federal judge ruled that New York state health officials must allow employers to grant a religious exemption to a COVID vaccine mandate for healthcare workers. And this is while a lawsuit challenging the mandate makes its way through the courts. And this is what had initially made me think of Jacobson vs. Massachusetts, because in that case, he was saying it’s a violation of my religious personal liberty. So I wonder what will happen here and I hope that, you know, regardless of the outcome, that it’s either some sort of mandate, a testing mandate, a vaccine mandate, something to help keep us safe.
Steve Newmark 08:40
On that note, I think mandates will continue to be a big discussion as we move forward, particularly in the political arena. This year, we have two governor’s races, one in New Jersey and the other in Virginia, and we can see the mandates are playing a role in both of these races. This can give us some clues as to where things might be headed in the political arena for 2022 and beyond, but also how elected officials are going to handle mandates moving forward. In Virginia, there’s a clear split on vaccines, the Democratic candidate Terry McAuliffe would require them for students, teachers and healthcare workers, and would support businesses that impose mandates. The Republican candidate, Glenn Younkin, says that he encourages everyone to be vaccinated, but opposes mandates himself. And it’s emerging as an issue in that race.
Zoe Rothblatt 09:26
So New Jersey Governor Murphy recently issued an order that two year olds and older have to wear a mask in daycares. And he’s required employees of schools, daycare centers and healthcare facilities to be fully vaccinated or submit regular testing, which is an opt out important for teachers. So we’re seeing this play out in states and I’m curious for your thoughts about what this means for other elections and years to come. Because this isn’t just about 2021.
Steve Newmark 09:53
I don’t think in any particular race, it’s going to be the deciding factor per se, but politics has become so hyperfocus on particular issues that even a few votes one way or another could really make a difference. New Jersey tends to be heavily blue state. So from that perspective, Governor Murphy should win reelection. Virginia is a purple ish state, although it leans blue, I don’t think that they have, it’s been over a decade since they’ve elected statewide a Republican. So the odds are heavily in favor of a Democrat winning. But pundits and folks like us in the policy arena are going to look at the ultimate vote numbers, to see how voters reacted in particular to things such as the mandates. You know, I said, it’s not the number one issue, but the number one issue probably is COVID right now. It’s hard to handle anything else until you get the pandemic under control. And the mandates are a big factor in doing that, and we’ll see what the reaction is. There’s certainly a louder contingent on the anti mandate side, but that doesn’t necessarily translate into votes. I’ve heard from small business owners who will say publicly, they don’t want to come out one way or another in favor of a mandate because of the political nature. They want to make sure that they appeal to all potential customers. And they do their best to adhere to the requirements. But anecdotally, they have said they would prefer mandates to guide them and being able to use the government, if you will, as the bad guy. I dealt with this when I used to work in local government, I remember restaurant owners that we talked to you loved the public health prohibition on animals, dogs in restaurants, because they were able to put up a sign that said, Sorry, we would love to have your dog in our restaurant, but the health department won’t allow us to. It makes it easier when there’s someone else to be the boogeyman, if you will.
Zoe Rothblatt 11:32
And I’m thinking how important the right information plays a role in this, there’s been a whirlwind of disinformation going around and having you know, that boogeyman give out the right information on vaccines is so important. And then thinking about what the people know, and what the people want. We actually received some listener feedback from our recent episode on vaccines and third shots and boosters. And I wanted to play this clip for you and everybody listening. I think it’s a really poignant, real life example of exactly what we’re talking about.
Sarah Rene 12:04
Hi, I’m Sarah Rene, I just want to scream. My aunt passed away after she got COVID when she was in the hospital for getting treatment for her Crohn’s disease. And the reason she died was because she was not vaccinated. She was afraid of getting vaccinated, afraid of what was in the vaccine, and very hesitant to get the information and hesitant to getting the vaccine out of fear of what was in it. I’m just angry that her along with 700,000, other Americans have caught COVID and died. And now that we have a vaccine, we have the key to not dying. I wish we could go back and get her the vaccine because then she’d still be alive today.
Steve Newmark 12:47
It’s heartbreaking to hear a story such as that, it’s literally a matter of life and death. Not getting the vaccine caused this person’s death, caused countless other deaths that didn’t have to happen. And it’s just heart wrenching. I’m not sure how to do a better job, I feel almost personally responsible because this is what we do. We’re trying to convince people to listen to the public health authorities, to listen to the scientists, to listen to people who have the expertise that we don’t have as to the safety and efficacy of these vaccines. And I almost feel a personal sense of loss, of failure that we were unable to break through to a lot of these individuals.
Zoe Rothblatt 13:26
That really resonates with me also. It’s, it’s easy to think of these in terms of statistics and numbers. And then we hear this clip from Sarah about her aunt. And we realize it’s a stark reminder that these are real people that we’re talking about and lives, precious lives that could be saved if people get vaccinated. We want to thank Sarah for her comment and being courageous and sharing her story with us and our audience. If you have comments, we invite you to send it in any form, that’s audio or written to our email at The Health Advocates at GHLF dot org. We encourage you to engage with us and you know, we may play it and have a discussion to better inform ourselves and our listeners. So Steven, as always, I wanted to ask what did you learn today?
Steve Newmark 14:10
Well, I learned that a third of the country eligible for vaccines is still on vaccinated. Unbelievable.
Zoe Rothblatt 14:16
And I learned that our conversations about vaccine mandates go back to George Washington, I think it’s interesting to think about our history and how long that we’ve been doing these and having these discussions.
Steve Newmark 14:30
We hope that you learned something too. We’d love to hear more from you about these topics and more. As Zoe said, send your email to The Health Advocates at GHLF dot org.
Zoe Rothblatt 14:39
And whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 14:45
Also email us if you wanted to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 14:50
Well, everybody 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 write a review on Apple Podcasts or wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 15:06
I’m Steven Newmark. We’ll see you next time.
Narrator 15:11
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 2: True Test Stories
Two podcast hosts traveling in two states share two memorable stories of searching for or being required to get a rapid COVID test.
“The price of a McDonald’s hamburger is the price of a McDonald’s hamburger but the price of an at-home COVID test really does vary depending on where you are in this country,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S2, E2: True Test Stories
SUMMARY KEYWORDS
test, home, testing, people, masks, zoe, vaccinated, week, declining, advocates, health, laws, steven, pregnancy test, price, spread, urgent care center, drove, shortage, local pharmacy
SPEAKERS
Steve Newmark, Narrator, Zoe Rothblatt
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steve Newmark 00:09
I learned that prices for these at home tests can really vary widely depending on what state you’re in or perhaps even more locally than that. I mean, the price of McDonald’s hamburgers, the price of McDonald’s hamburger, but the price of an at home COVID test really does vary depending on where you are in this country. 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 00:39
Our goal is to help you understand what’s happening in the healthcare world to help you make better informed decisions to live your best life.
Zoe Rothblatt 00:46
So Steven, I wanted to start us off with some good news. It seems like the summer’s Delta surge is declining as we begin the fall season. Leaves are changing, things are feeling pretty good.
Steve Newmark 00:57
Yeah, in Texas and other hard hit states, new infections are going down, suggesting the virus has already spread through the most vulnerable. Overall US cases are on the decline. Yet the pandemic continues. Hospitalizations remain at levels they were last winter, and the death toll has passed 700,000 Americans. Data showing declines are very reassuring but when you look at the toll the ICUs are still bearing, it’s really brutal out there.
Zoe Rothblatt 01:22
And while numbers are declining, now is really the time to stay on the offense against this disease. We’ve learned that when we let up the disease really comes roaring back. We’ve been in this since the end of 2019. And it’s still with us. So how do we end this pandemic? Last week, we talked about vaccines could help end it. What about the other tools that we have, masking and testing?
Steve Newmark 01:44
It seems as though there are really three tools at our disposal. There’s the vaccines, there’s masks, there’s testing. There are other tools, of course, there was quarantining, but we’re not going back to that anytime soon.
Zoe Rothblatt 01:55
Hopefully.
Steve Newmark 01:56
Yeah, but the three big ones, of course, are vaccinations, masks and testing. We spoke last week about the vaccines, it seems as though we’ve moved past the carrot phase and into the stick phase. But the other two, masks and testing. Masks are still very controversial. It still is a political statement almost to wear a mask in certain parts of our country. But testing, the third prong of those tools could be the key. One example is in Great Britain, children are back at school and are doing so without masking. They’re doing a heavy dose of testing. I believe that they’re testing up to twice a week, all schoolchildren, so they’re able to identify and find cases early, have individuals quarantine and thus stop the spread that way. I have a question for you, Zoe. Would you like to see more at home testing?
Zoe Rothblatt 02:39
I would like to see more at home testing. And I think the Food and Drug Administration who approves these at home tests just recently authorized a new at home COVID test. And it’s anticipated that this will double the availability of tests in the coming weeks. What’s really great about these tests is that they can give results in as little as 15 minutes. Actually, did one myself, I just went to the pharmacy across the street, I picked one up and at first I thought maybe this is a little sketchy. How can I do a test, I’m not a medical professional. And then I was thinking people do at home pregnancy tests. And, you know, we go to the doctor to say, Okay, final results, maybe confirm if you’re actually pregnant when you get a positive results. But in the meantime, an at home test is a good indicator of what’s going on. So I’d like to see more at home tests. It’s something our community has, and we should get more comfortable with. And it’s really important because there’s been supply shortages. So it’s really important in that sense. And for people in our community who may be afraid to go out and go to a testing facility where people are positive, it can be comforting to be able to just do it in the comfort of your home.
Steve Newmark 03:45
I totally agree. I think we need more at home testing, we need more testing generally, you can confirm or at least get a better sense, like you said, you can confirm it later at a true healthcare facility with a perhaps a PCR test. But getting a sense of whether your scratchy throat is COVID or just a scratchy throat is so important to help stop the spread. And I am definitely understanding of those shortages. I’ll tell you a very quick story. Several weeks ago, my kids had randomly off on a Monday, Tuesday, Wednesday from school so to help with my childcare duties, I left on a Sunday to go to my in laws, drove two hours with my kids arrived at my in laws a little after four o’clock, got a phone call as I arrived that there was a child in their school that had COVID that tested positive and I said, Well, what am I supposed to do here? I mean, they have about 500 kids in the school. You know, I’m with my elderly in laws, they’re vaccinated. My kids seem fine. I didn’t know what to do. I was freaking out. It was not something I would have worried about if we were just at home with myself and my children. But being with my elderly in laws, I felt okay, here’s what I’m gonna do. I’m gonna go get a test. I’m gonna do a rapid test and we’ll knowm, if they test negative I’ll feel okay, if they test positive, we’ll deal with it then. So with my children, I drove around to five different pharmacies. None of them had tests. While I was doing that, my wife back in New York City was calling urgent care centers near her parent’s house. But they were all closing it was late in the day on a Sunday. So I was unable to get a test, I had just driven for two hours plus another 45 minutes driving around to find the test. And I didn’t know what the ethical thing to do there was. And I said, Well, I can’t expose my in laws. I told my kids, I said, guys, back in the car, and we’re going home. And I drove back. And this time, it took almost three hours to get home because traffic had built up pretty heavily.
Zoe Rothblatt 05:28
Oh man.
Steve Newmark 05:28
Got home, my wife in the interim was able to get a test at a local pharmacy near us, it was simple like you mentioned. It was like a pregnancy test where you get the results within 15 minutes. We all tested and we all tested negative, thankfully. And yet, if I could have gotten that same test, by my in laws, I would have saved myself, not only three hours of driving, but three days of babysitting just because it was so difficult to get a test we couldn’t do that.
Zoe Rothblatt 05:51
What strikes me about this story is you’re a health advocate, a policy person, your wife works in the healthcare system as well. So these are two very equipped people to be navigating the healthcare world and industry around you. And you had so much trouble. So that just makes me think of people that aren’t as familiar with what to do in these scenarios, people in rural areas that don’t even have access, you mentioned going to a bunch of places. I feel lucky that we’re in an area that has a lot of places. And I think that at home testing could really help so many people like you in this scenario, but also people out there that just don’t really know what to do.
Steve Newmark 06:27
One other issue I wanted to raise with regards to testing, I don’t mean to complain but the at home tests, they cost some money. Prices seem to vary somewhat wildly. We paid essentially $25 per test. And that’s not cheap for the at home tests. Ironically, however, if we were able to find an urgent care center that was open, it would have been covered by our insurer. So I just think that’s a factor, gee should I get dressed, go to an urgent care center, potentially expose other people in the world to the virus to get the free test versus getting it at home, which is much simpler.
Zoe Rothblatt 06:59
And sometimes I’ve seen the lines here in New York City are around the block so it seems like you would have to wait an hour just to get the test. And people don’t have that availability. And employers are demanding these tests as vaccine mandates come up. And people need more tests. And this is causing the shortage. And you say it’s expensive, as demand goes up, the price goes up for these tests, there’s not enough so whereas I saw that in Missouri, they used to sell the BinaxNOW that’s actually the one I got that was at my local pharmacy. It comes in, it comes in a pack of two, and they were selling it for $5, which is pretty decent cost I mean, as opposed to free, not great, but still $5. And now it’s getting more expensive, because there’s a shortage of supply, which is intimidating as we head into the cold weather.
Steve Newmark 07:46
First of all, that’s great. $5 I paid $25 for my Binax. But it’s still not as bad as South Carolina, where a spokesman says that they’re paying as much as $130 for each of their rapid tests.
Zoe Rothblatt 07:57
Oh, man, I don’t think I could afford that.
Steve Newmark 07:59
Right. I know. I know.
Zoe Rothblatt 08:00
Because some people probably have to get tested once or twice a week. And could you imagine so much of your budget going to
Steve Newmark 08:07
Oh, I hear Macintosh. How’s he doing?
Zoe Rothblatt 08:10
He got his last rounds of shots as we talked about last week. He’s feeling good. He’s feeling protected. Actually, it’s funny you ask in terms of testing. The vet said we still test if he has any symptoms, collect a little sample and bring it in. So it feels like the puppy world is similar to the world we’re living in.
Steve Newmark 08:28
Oh, wow. Don’t get him within six feet without a mask.
Zoe Rothblatt 08:30
Exactly. Only other vaccinated dogs at the dog park. But on a serious note, I actually have a really successful testing story. I went to a wedding earlier this summer, it was outdoors. But we were still nervous. I’m immunocompromised and a lot of members of the family are and the bride wanted everybody to feel really safe. So she actually got the at home tests and had a little tent when you entered and every guest got tested and of course, if it’s negative, you’re allowed in, if it’s positive, sorry, go home.
Steve Newmark 09:00
Do you know if anyone tested positive?
Zoe Rothblatt 09:02
That’s a good question. I don’t know because they didn’t make it into the wedding if they did, but what I do know is after the wedding, no one reported having COVID which I thought was a really big success because I had heard from other people at weddings earlier that summer, even even that week that they were becoming COVID hotspots of super spreader events. So I was really glad to see that this shows how testing can really stop the spread.
Steve Newmark 09:26
Coming full circle who should get tested?
Zoe Rothblatt 09:28
Great question. I will say that the guidance is often changing from the CDC, the Centers for Disease Control and Prevention, but as of now, who should get tested is people who have symptoms of COVID, people who have a known exposure and people not fully vaccinated who have been asked to get a test whether it’s by your school. an employer, you know, if you’re going to an event that requires a negative COVID test, these are the groups that should be getting tested. I think the one remaining question is when to get tested after exposure. So it’s recommended that if you’ve been fully vaccinated, you should get tested three to five days after your exposure to the infected individual. And then it’s also a good idea if you can to get tested another three to five days after that, because some people it can take a week to 10 days after exposure to develop, I guess symptoms of a COVID infection.
Steve Newmark 10:20
Oh, wow, this has been fascinating and illuminating. We didn’t get to talk much about the other prong of protection, which is masks but I’m getting the sense it’s almost as if we’ve sort of come to a place in our country where those who are going to wear masks are going to wear masks, and those who aren’t are just not going to be convinced otherwise, which really means we have to strengthen the other two prongs, the vaccinations and the testing in terms of keeping things up. So hopefully some of what we talked about in terms of getting more tests available, more access for folks will make their way into actual policy. And hopefully you and I, Zoe, can help effectuate that.
Zoe Rothblatt 10:53
Well, Steven, it’s been great chatting with you today. As we close out, I wanted to ask you as always, what did you learn today?
Steve Newmark 11:00
I learned that prices for these at home tests can really vary widely depending on what state you’re in or perhaps even more locally than that. I mean, the price of McDonald’s hamburgers, the price of McDonald’s hamburger, but the price of an at home COVID test really does vary depending on where you are in this country.
Zoe Rothblatt 11:13
For me, what I learned from your story is that you are your own best advocate. And when faced with a health challenge, it’s really important to get out there and research and do what you can do to help get the right care and keep everybody around you safe. It’s just a really stark reminder of even when you have all the tools, it can still be a big challenge navigating this healthcare system. So, you know, reach out to people like us, health advocates that can help you get the care that you need.
Steve Newmark 11:40
Well, we hope you learned something too. We’d love to hear from you about masks and testing and how it’s affecting your daily life. Send your email to The Health Advocates at GHLF dot org. Or better yet, include a short video or audio clip.
Zoe Rothblatt 11:55
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steve Newmark 12:02
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week. That’s The Health Advocates at GHLF dot org.
Zoe Rothblatt 12:09
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 rating, write a review on Apple Podcasts or wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 12:25
I’m Steven Newmark. We’ll see you next time.
Narrator 12:29
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Season 2, Episode 1: Confusion, Confusion
As we start season two, we have a new look, a new title and a renewed focus. Steven and Zoe walk us through the confusion over vaccines, boosters and conflicting scientific opinions. On top of this, we see how trust is compromised when government agencies don’t agree.
“Confusion might be an understatement,” says Zoe Rothblatt, Patient Advocate at the Global Healthy Living Foundation.
S2, E1: Confusion, Confusion
SPEAKERS
Steve Newmark, Narrator, Zoe Rothblatt
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steve Newmark 00:09
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 00:19
And I’m Zoe Rottblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steve Newmark 00:23
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions and live your best life. There’s a lot of confusing information out there.
Zoe Rothblatt 00:32
Yeah, Steven, I think confusion might be an understatement at this point. We’ve been hearing a lot of news about boosters and third shots and it’s extremely confusing, especially for our community who are immunocompromised patients, people living with chronic disease, you take medications that suppress their immune system, there has been a lot of confusion in the general news. And also we’ve been lacking specific information for our community on what to do next.
Steve Newmark 00:59
You know, it seems as though the main complaint lodged against Donald Trump’s response to the pandemic is that he didn’t follow the science. Joe Biden has promised repeatedly to do so. But when it comes to the pandemic, there’s a catch there are conflicting scientific opinions. And our main governmental institutions in charge are having trouble deciding among them faced in the last month with adult variant the Biden administration has not performed so well, was late in appreciating the threat that the Delta very imposed. Even though the virus was raging through India in May. The CDC declared that the vaccinated need to wear masks and Biden called for, quote, summer of freedom from COVID to be celebrated on July 4,
Zoe Rothblatt 01:38
I’d like to take a step back here and think about that time, a lot of people were really excited to get into summer and and rightfully so hopeful. But at that point, many in our community, we’re still feeling really left behind. They weren’t ready to go out there. They were still isolating strictly, we had learned from some studies that maybe they didn’t respond to the vaccine as well and build up enough immunity. So going out still felt very scary. And when you see the overarching attitude of the country is let’s go we’re fine. It’s sorry, scary for our community that didn’t have this protection that other people did.
Steve Newmark 02:13
Absolutely. And to be fair, it’s not just our community. By July, the Delta variant had taken hold in the United States, cases of hospitalization and death were soaring. Those of us like me who follow sports knew that breakthrough infections were occurring. I saw with my sports teams, but the CDC didn’t seem to take notice until there was a widespread outbreak among celebrants in Provincetown in early July, at the same time in Israel where 78% of the population over age 12 had been vaccinated, a fourth wave of the virus hit. Many of those infected had already received two doses of the Pfizer vaccine. And by late August, nearly 60% of the people hospitalized in Israel had been vaccinated, a shockingly high number. So there was evidence out there around the world that there could be breakthrough infections. And there was some timidity in the United States in what we were dealing with. And on the basis of Pfizer’s finding that a third dose would increase immunity as much as tenfold, Israel began giving third doses to its citizens with initial findings showing that the boosters had slowed the rise of the virus.
Zoe Rothblatt 03:09
Yeah. And I actually remember when we first got that news that Israel was giving out booster shots. I heard from many patients we work with, a really sense of hope to say, okay, somebody else is doing it, maybe it’s coming to us soon. Throughout COVID. It’s been really interesting. We’ve talked about on this podcast to compare what’s going on in the US versus other parts of the world. And it seems like with the vaccine, we had been really ahead and we talked about how Israel was doing a terrific job with distributing the vaccine. And I think that there was a really big sense of hope when we heard about this news.
Steve Newmark 03:43
Absolutely. And in mid August, the CDC did recommend that immunocompromised Americans should receive a third dose of one of the mRNA vaccines, those are the Pfizer or Moderna. The FDA adjusted emergency authorizations for Pfizer and Moderna to allow for this extra dose for certain immunocompromised individuals. Even the guidance was a little, shall we say, unclear, but still, it came out in mid August, and many folks in our community got this third shot under recommendation from their doctor and felt much more protected and safe. The purpose of the shot which is different than a booster, the purpose of the shot was to accomplish in immunocompromised people what the two doses accomplishing everyone else. Now, the booster shot is a little different. It’s the same physical shot, but the idea of a booster is to give your body a boost so that you’ll get back to where you are after getting a second shot. So Zoe, we’re still at a point now, where vaccination rates are not as high as they should be. Do you think that the federal government has been too timid in responding to this emergency in putting forth policies that would get more Americans vaccinated?
Zoe Rothblatt 04:51
It’s a really good question, because we’re having two conversations at the same time. One is like you mentioned, we need to get people their initial doses and the other one is this conversation about boosters and third shots and for the people who have already said, yes, I’ve got the vaccine. I’ve got the one shot Johnson Johnson or the two shot mRNAs. Now we’re saying, Okay, do they need more protection? And who should we put the focus on? Should it be on one group, should be on both groups? And it seems like that first group of sorry,
Steve Newmark 05:21
did your dog get the shot?
Zoe Rothblatt 05:23
Actually, he he’s about to get his second round of puppy shots. So he’ll be fully vaccinated soon. He’s a vaccine advocate. Yeah. And so great.
Steve Newmark 05:32
You could take his mask off.
Zoe Rothblatt 05:33
Yes, exactly. He can meet other vaccinated dogs. So it seems like this first group has been kind of ignored, this one that once the booster shot conversation came into play that this first group who hasn’t been diagnosed is getting a little bit ignored. And, and to me, as a public health person, I like to go back to the data and see what’s going on. And I think that we saw in these FDA meetings, these advisory committee meetings that people are seeing different things in the data. But what’s challenging is that some people are saying, okay, there really isn’t a need for the general population to get a booster. And this is positive, in my opinion, if we still have immunity to COVID. And we can get away without getting another shot. That’s incredible. But we do have to think about this initial group. And to go back to the question you asked, Is the government being a little too timid? I think the answer is yes, we talked about the way out of this pandemic is vaccines. So we must focus on all the group’s in my opinion,
Steve Newmark 06:31
I have to agree with you. We’ve spent a lot of this summer, the carrots and sticks. There have been the carrots, the $100 gift cards, the lotteries, and in Ohio and West Virginia, you know, it helps, but it’s gotten to the point that it’s surprising to me that there are still so many folks who are so public facing, folks who work in education with children, and folks who work in healthcare who are still not vaccinated. They use the term mandate, which I think is a misnomer. There was that promulgation by President Biden, from OSHA regulations mandated from certain private businesses, I think it was over 100 employees, it was not really a vaccine mandate, it was a mandate to either get tested or get the vaccine, I think the more proper term, it was actually a mandate to get tested, which you can opt out of if you get the vaccine. So I think that the salesmanship on that was pretty poor.
Zoe Rothblatt 07:18
And what’s also interesting in this time, I’m talking about mandates is that the Pfizer vaccine actually got full approval from the FDA. So this was different than the emergency use authorization it had before.
Steve Newmark 07:32
Good point.
Zoe Rothblatt 07:32
and that the other vaccines still have this is the only one that has full approval. And I think that helped bolster a lot of the the questions around it to say, Okay, this has legitimate approval now. And we did see some people saying, Okay, I’ll get it.
Steve Newmark 07:47
Right. And I just want to say in regards to mandates, I’d like to see studies, but anecdotally, they seem to work. Here in New York, there’s a requirement that survived a court challenge for healthcare workers to be vaccinated. There have been disputes, there were protests, but it went through, there was an article showing that a lot of healthcare workers actually got vaccinated right before the deadline to avoid losing their jobs. We’re also seeing in New York City specifically, there’s a mandate for teachers to get vaccinated. I think it’s actually for anyone within a public school building to get vaccinated, I suspect we’ll see a similar uptick there as well. So to me, that’s a sign that these mandates do work. It’s like, Hey, you want to come to work, you got to take healthcare precautions. If you want to send your child to school, they have to have the measles, mumps, rubella vaccine, they have to have all the vaccines and this is one of the vaccines that are required now in the working world. If you want to interact with your fellow citizens, I’m surprised and disappointed that they’re still not an FAA regulation requiring vaccinations on airplanes. But on the flip side of that, it seems as though there have been very few outbreaks connected to airline travel.
Zoe Rothblatt 08:55
To go back to where we started. It’s confusing. I think that a lot of people are confused with the recent news. And there’s been some conflicting opinions about who needs what shot and I think maybe that also plays into the mandate conversation where it’s hard to tell people what to do when when the regulators are still having these discussions and figuring it out. So just to dive into that a little bit, there was an FDA advisory committee meeting earlier this month, and they were there to talk about whether or not people for the Pfizer vaccine should get a booster. And what they ended up saying was that certain groups should. Right now the vaccines approved for 16 and older so they said okay, not that but seems like by the data 65 and older should get a vaccine, those who are immunocompromised because of an underlying condition that puts them at high risk for COVID complications, and also people who are at high risk from their jobs. So when we think about healthcare workers or people in tight places where COVID could be passing around.
Steve Newmark 09:57
Right.
Zoe Rothblatt 09:57
So this was a committee meeting that makes the recommend In addition for the FDA, and then there’s also a CDC Advisory Committee. Right. So they met to discuss the same thing with the Pfizer vaccine. And for the most part, they agreed. And then they had this one caveat which said, Okay, maybe not for people with high risk from their occupations. And I think that confused a lot of people, because our regulatory bodies are are saying different things. And what came out of that was the director ended up saying, okay, it should also be for people who puts at high risk from their jobs. But my question for you is, how do you make sense of these conflicting opinions and ever changing guidance?
Steve Newmark 10:38
It’s very confusing, and, how do you make sense of it? Frankly, you just don’t know that that’s a bad answer. You do the best you can with the information you have presented in front of you. That’s the role of a policymaker, true policymaker, are supposed to take expert opinions, folks who are experts. On a personal level, what disappointed me with the FDA’s decision, and I watched a lot of the hearing or the meeting wasn’t a hearing. The FDA’s role is to really deal with the science and whether a vaccine or a drug is efficacious, doing what it’s supposed to do. And whether it’s safe. A lot of the discussion, if you followed it was about well, is Is this the right thing to do from a public health standpoint? Are we going to confuse people by sending out this guidance? Are we going to take away vaccines from folks overseas who need it? And as a citizen watching that I was very distraught, I said, that’s not the role of the FDA, the FDA are supposed to be the scientists who tell us whether the vaccine is effective, and whether it’s safe, yes or no, answer that question, then get to the next level, which is the CDC. And then the ultimate policymakers have to weigh those competing interests of the global public health in the United States, the confusion to the people and so forth. So I do think that the FDA, you know, for lack of a better term overstepped their mandate in terms of just strictly following the science, which I think was problematic, and leads to more confusion. You know, I talk with friends in Washington, who always say everyone is an armchair quarterback now when it comes to politics. You know, when people ask about politics, you know, they’re talking about the infrastructure bill. If you like it or not, and they start to quote, well, I don’t think it has the votes to pass or something like that. But that’s not the policy, you know, everyone’s trying to be a pundit. And I think the FDA kind of overstepped their bounds which, which has led to deeper confusion, unfortunately,
Zoe Rothblatt 12:13
that’s interesting. I didn’t think of it that way. But they overstep their bounds. And we all feel a lot of this at our dinner table where, like you just mentioned with the politics, what do you think of this bill and and people sidestep and just have different conversations on the actual topic, when it comes to politics, it’s a bit challenging to navigate. But I think that when we look at the data, they did make the right decision. In my opinion, we saw that people who are immunocompromised need it, when you think about people are at high risk from their jobs, I’d like them to have it that sounds like a necessary thing. And people older than 65 have weakened immune systems similar to our community. So at the end of the day, I think we came to the right spot, and I’m hopeful that we can see a boosted immunity in our country,
Steve Newmark 12:58
there is one other thing that I’m interested in that I don’t know about. So I was wondering if you knew about it? What about the idea of testing your own current state of antibodies, if you will?
Zoe Rothblatt 13:07
So this is a little tricky. What you mean by that is, is testing the antibody levels through a blood test or what have you, in order to see what response you garnered from the vaccine?
Steve Newmark 13:19
Correct.
Zoe Rothblatt 13:19
So right now, it’s not recommended to do that. I know people are doing it with their doctors, you can get the test no problem. And I actually got it, it’s covered by insurance. What’s interesting is that there’s no one test. So they’re all really different. And it’s very hard to compare. So that’s one issue with it is that not one test is out there. So you’re not getting the same story across the board. When you look at the numbers, you know, someone could, let’s say have, I don’t know in the 1000s, and someone in the 100s. But you can’t really compare those numbers to say you have a better response, because it’s a different test. And the second issue is, is that there’s also I believe it’s a T cell response. I’m not exactly sure I’m not, you know, a scientist here.
Steve Newmark 13:59
yes, get your science news elsewhere. This is health policy. And not science.
Zoe Rothblatt 14:02
exactly get. the cellular level should not be depended on from me. But there’s also responses that we can’t get in the blood test. So when you look at this antibody response, it’s not the full picture of the immune responses going on in your body. You know, you can get it and it may make you feel good or have a better conversation with your doctor about what to do next. But then again, it’s not the full picture. So that’s where these other precautions come in, like wearing your mask and distancing and trying to do things outside whenever you can.
Steve Newmark 14:33
Right, masks, and also just testing. Those are two good topics that we should definitely talk about on future podcasts. This has been great. Thanks as always Zoe, it’s been illuminating for me,
Zoe Rothblatt 14:43
Steven, what did you learn today from our conversation?
Steve Newmark 14:47
I guess I learned about these antibody tests and how there are different antibody tests. I did not know that and how there could be discrepancies based upon the test that you get, and it’s not, at least as currently situated, that’s not going to be the savior.
Zoe Rothblatt 15:01
For me, I’m thinking back to your conversation about the FDA and what they’re supposed to look like, as a patient myself in a patient advocate, I think it’s easy to get into the emotional side of the argument and saying, we want this, we need this, but it’s a good thing to step back and say, Okay, what is this regulatory body supposed to be doing and supposed to be looking at and let’s follow that and go from there.
Steve Newmark 15:25
We hope you learned something, too. We’d love to hear from you about your thoughts on the boosters and the state of confusion generally, with a pandemic. Send your email to the health advocates at GHLF dot org? Or better yet, include a short video or audio clip
Zoe Rothblatt 15:39
Yeah, and who knows whatever you share, may be included in our listener feedback portion of future episodes.
Steve Newmark 15:46
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:51
Well, everybody, 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 or wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steve Newmark 16:09
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.
About Our Hosts
Steven Newmark
Steven Newmark, JD, MPA, is Director of Policy and General Counsel. Steven leads global advocacy and policy initiatives. He was most recently Special Counsel to the President of NYC Health + Hospitals in New York City. Before that he served as the Senior Health Policy Adviser to New York City Mayor Bill de Blasio. He also served as General Counsel in Mayor de Blasio’s Public Advocate office, and as a Health Sciences Litigation Associate at Orrick, Herrington & Sutcliffe, LLP in New York City where he was part of the team that successfully defended the Vaccine Act before the Supreme Court in Bruesewitz v. Wyeth.
Additionally, he has taught Public Policy at Columbia University and is an Adjunct Professor in U.S. Health Policy at the City University of New York, Baruch College. He received his Juris Doctor from Fordham University School of Law and his Master of Public Policy and Administration, Advanced Policy and Management from Columbia University School of International and Public Affairs. He received his Bachelor of Arts, Philosophy, Politics and Law from the State University of New York at Binghamton.
Zoe Rothblatt
Zoe Rothblatt, MPH, is a Patient Advocate, Community Outreach Manager and engages in direct patient communications, supporting GHLF’s patient councils and board of governors. Zoe is responsible for understanding patient needs and creating patient-centered resources as well as researching policy initiatives. She earned a Master of Public Health at Columbia University’s Mailman School of Public Health, with a focus on Health Policy and Management. She received a Bachelor of Arts in Health: Science, Society and Policy from Brandeis University. Prior to joining GHLF, Zoe worked at the Community Service Society of New York as a community health advocate providing direct service, advocacy, advice and referrals for patients needing assistance.
Catch up on season one, titled “News You Can Use” with Steven and Zoe.
Season 1, Episode 8: Airborne viruses can be stopped with masks
Steven and Zoe are in conversation this episode on mask, mask, masks. And the learnings on how to handle COVID-19 in our new normal this summer.
This episode helps to provide hindsight on where we are and where we’ve been.
Season 1, Episode 7: Did the COVID-19 outbreak come from a lab?
Steven covers if the COVID-19 virus came from a lab, what that means, and how the government is taking action against the virus. While Zoe covers how we can work together as a global society.
This episode helps to understand the origins of the virus and how the world can work together to continue decreasing cases.
Season 1, Episode 6: Listen to the science but do what makes you comfortable
Steven covers how COVID-19 numbers are dropping across the United States while vaccination rates increase. While Zoe covers how immunocompromised people can feel safe reaching back to the new normal. This episode is great for those who are immunocompromised or share concerns about mask-wearing changes.
Season 1, Episode 5: But what does it mean, the plague? It’s life, that’s all
Steven covers the CDC’s rule revisions on mask-wearing for those vaccinated, while Zoe dissects the difficulties people may face with re-entering the new normal after vaccination. This show answers philosophical questions that arise after pandemics and shares insights into how politics come into play.
Season 1, Episode 4: What are the international COVID-19 vaccine rollout strategies?
Steven covers the different vaccine rollout strategies between the United States, Israel, the United Kingdom and Chile. The team dissects the strategies in full. While the BLATTs cover the big questions on everyone’s minds: When will we reach herd immunity, is a 60% or 70% vaccination rate enough, will we need yearly COVID-19 vaccination boosters? How does access and availability of vaccinations improve the quality of life for Americans? This week’s show asks a lot of questions, so you have the answers.
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