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.
S6, Ep9- COVID After the End of the Emergency: What We’re Seeing
The hosts discuss the current state of COVID since the end of the public health emergency, including updates on case and hospitalization rates, CDC recommendations for improving air quality, promising results on an Evusheld replacement, and vaccine plans for the fall. They also cover the latest news on the debt ceiling, and recent FDA approval of Paxlovid, the antiviral treatment for COVID.
“Researchers estimated that based on COVID rates in January, Paxlovid can lead to 1,500 lives saved and 13,000 hospitalizations averted each week in the United States,” says Steven Newmark, Director of Policy at GHLF.
S6, Ep09- COVID After the End of the Emergency: What We’re Seeing
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
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 00:17
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:22
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 00:28
Today, we’re going to talk about the current state of COVID. What’s going on since the end of the public health emergency, but first, we do have a few news updates, including updates about the debt ceiling. Steven, why don’t you tell us what’s going on there?
Steven Newmark 00:42
Yeah, so as we’re recording, it looks like a deal has been set. And it’s still awaiting passage, but the Speaker of the House, Kevin McCarthy and the President Joe Biden came together for a deal over Memorial Day weekend, and they believe that they have enough votes in the House to get it passed. The leaders of the Senate, Mitch McConnell, the minority leader, and the Majority Leader, Chuck Schumer, have both come out and said that they have the votes on the Senate side of things. So knock wood, it sounds like a deal has been made. And that does avert what many economists were predicting would have been an economic disaster.
Zoe Rothblatt 01:16
So there’s one important piece in here that I wanted to highlight for our community, which is about the COVID clawbacks.
Steven Newmark 01:22
Sure.
Zoe Rothblatt 01:23
So this current deal would take nearly $30 billion in unspent COVID relief funds.
Steven Newmark 01:29
Yeah.
Zoe Rothblatt 01:29
And this would be, come out of dozens of programs. That doesn’t mean all COVID programming will stop, there definitely is money for some programs, such as veterans health care, COVID treatment and vaccine research. But it definitely is a little uneasy to hear that all this money will be taken out.
Steven Newmark 01:45
Yeah. I mean, look, I think the big picture is, you know, the debt ceiling was an opportunity, if you will, a moment for Republicans to impose their agenda, which included the idea to cut spending, and the idea that you were going to get through some cuts of spending and not have it touch health care was probably not something that’s realistic. That said the deal, for the most part avoided a large swath of health care costs, you never want to hear that there were cuts to health care and COVID-19 and relief funds. However, I think it’s important to note that the deal as currently constituted preserves funding for NextGen. That’s the program that is working to develop the next iteration of COVID vaccines. So that’s pretty important. And it would have been really severe having reached the debt limit without a deal. The disruptions to hospitals, providers, really would have been severe in terms of Medicare Medicaid costs, and most importantly, there have not been cuts to Medicare or Medicaid.
Zoe Rothblatt 02:39
Right, right. Yeah. Well, when you put it in that perspective, I guess you win some you lose some.
Steven Newmark 02:44
Yeah. Yeah, exactly.
Zoe Rothblatt 02:46
So when do we think we could see next steps on this? What should we be on the lookout for?
Steven Newmark 02:51
Well, we are recording on Wednesday, May 31, there’s discussion that it could go for the House vote as early as today, possibly tomorrow. Hopefully this week, the Treasury Secretary says that we’re scheduled to run out of money on June 5, so this would have to get asked by both houses and signed by the president before then if we want to truly avoid the debt ceiling crisis. There are some far right Republicans who are making noise and stating opposition to the bill. But it looks as though there are enough of a combination of Republicans and Democrats in the House to get it passed. And it also looks as though incredibly speaker McCarthy will live to survive and if anything come out actually stronger based on these negotiations with which is quite fascinating.
Zoe Rothblatt 03:38
Yeah. Is it the first time a negotiation like this has happened?
Steven Newmark 03:41
No, no, there have been other debt ceiling crises, the most well known one was in 2011. From Republicans pretty similar, you had an incumbent Democrat seeking reelection a year and a half later, and they imposed a deal that called for, they called the sequestration deal, which, you know, essentially froze a lot of funding in place through the election. So it’s not the first time and it’s been threatened at other times throughout as well.
Zoe Rothblatt 04:07
Okay, well, we’ll keep our eye out on that and our community updated.
Steven Newmark 04:11
Yes.
Zoe Rothblatt 04:11
The next bit of news, the US Food and Drug Administration granted full approval to the COVID treatment paxlovid. This is the antiviral that’s for adults who are at high risk of getting severely sick.
Steven Newmark 04:24
Yeah, you know, this jumped out at me, the researchers estimated that based on COVID rates in January, paxlovid and I’m quoting now can lead to 1500 lives saved and 13,000 hospitalizations averted each week in the United States so this is great news. It’s good to have a full approval and some more tools in our arsenal as we go forward.
Zoe Rothblatt 04:43
Definitely and part of the FDA’s role is post market surveillance. So once a drug is available, they look at how it’s going. This was made first available in December 2021 under the emergency use authorization and it’s good to hear that after they’ve seen it in the real world that now it’s getting this full approval.
Steven Newmark 05:01
Yeah. Well, moving on as we enter the summer, if you will, the unofficial start of summer after Memorial Day, we’ll talk about where we are we, you know, we got through the public health emergency and talk about the current state of affairs. So let’s get into it.
Zoe Rothblatt 05:13
So first on our list, surveillance. What’s happening with the numbers? I think we’re all kind of watching, the public health emergency ends. Does this mean COVID is going to explode? Does the virus know our emergency has ended? What’s going on?
Steven Newmark 05:27
Yeah, well, the numbers are showing that COVID-19 is nosediving across all metrics in all regions of the United States, hospitalizations are down, deaths are down, emergency room visits are down. And also wastewater surveillance, that’s still tracking are showing numbers that are down although the caseload is seen in wastewater still higher than it was in 2020, and 21.
Zoe Rothblatt 05:49
So all in all good news that cases are going down, especially what you said, hospitalizations and deaths are going down. I know, those are the numbers that we’re really looking at now.
Steven Newmark 05:59
Yeah.
Zoe Rothblatt 05:59
And it’s great to hear that this is going down, of course, we have to remain cautious. We always know that in the summer, the trends we’ve seen is that cases go down and in the fall, they come up. So of course, we’ll keep a watchful eye, but it’s good to see that the same pattern is occurring.
Steven Newmark 06:13
Yeah and I think the number one metric is really deaths, because that’s the worst possible outcome. And right now, excess deaths in the United States are hovering about 1% above the pre pandemic rates. And just by comparison, at the height of the pandemic, excess deaths were hovering at around 47%. So that’s a pretty good, you know, statistic to look at.
Zoe Rothblatt 06:33
Of course, because I mean, those percentages are a loved one to someone. And, you know, it breaks my heart to think about where we were three years ago, at this time, here in New York City, we had morgues in the street. And it’s amazing to think about how far we’ve come but also just to take a moment and recognize how many people lost loved ones.
Steven Newmark 06:52
Yeah, for sure. So you know, let’s turn to some noteworthy COVID-19 news. Number one indoor air quality. Up until now, the CDC recommended that we quote unquote, improve ventilation to reduce transmission, but didn’t really provide much guidance until about two weeks ago. So the CDC says aim to deliver five or more air changes per hour. And I can’t believe there’s actually an acronym for this, ACH, air changes per hour of clean air.
Zoe Rothblatt 07:19
If it’s healthcare, there’s always an acronym. Right?
Steven Newmark 07:22
I guess that’s true, I don’t even think it’s a health care thing. But anyway, five or more air changes per hour, which is a combination of air ventilation filtration to reach this target.
Zoe Rothblatt 07:34
And they also recommended upgrading filters. So just using higher rated filters in your heating or air conditioning system, turn your HVAC system on.
Steven Newmark 07:44
Yes.
Zoe Rothblatt 07:45
Set your ventilation system to circulate more air when people are in the building. Yeah, these are things that we’ve heard all along, but I guess it’s more specifics now.
Steven Newmark 07:53
Yeah, absolutely. Absolutely. They also recommended adding fresh air opening windows, when you’re able to do so using air purifiers, I got a giant one and you should see it.
Zoe Rothblatt 08:04
Do you feel like your air is more clean your breathing fresher?
Steven Newmark 08:08
I don’t actually but whatever, I’m glad It’s there. And to be fair, I should note this but these are more recommendations for the public at large. I think in your own individual house and apartment, you’re really only dealing with your family. But the idea of turning the HVAC system on I think that’s really meant for particularly places of business where strangers are gathering and coming and going at all different times.
Zoe Rothblatt 08:27
That’s actually what I was about to ask. So these are just recommendations from the CDC for businesses and public areas. But I guess there’s there’s no way to check if this is really happening in those places?
Steven Newmark 08:39
That is true. Yeah, that’s true. That’s true. There’s no way to know. But the whole idea is I suppose it starts up on high, the CDC issues their recommendations, and they start to trickle down. You see them a lot in public buildings. You know, a good example of this would be local districts might impose these roles on schools, for example, so that schools can adopt some of these programs keeping their HVACs, on using air filters, things of that nature. Now these costs money, so I don’t know how likely is that school is going to have this in their budget. Just as an example of how this can sort of trickle down. You can, you could start to get ordinances, local city councils, town councils can start to issue ordinances for businesses to either keep an HVAC system on at all times or have an open vinto open window, things of that nature.
Zoe Rothblatt 09:24
It’d be great if there was some like how the restaurants have the letter grade if there was some grade of air quality and people could go in and make like more informed health decisions about what they feel comfortable with knowing the air quality.
Steven Newmark 09:37
True, although I think for every single person living in Los Angeles or in New York, that air quality would probably always be zero, but so true, but yeah, no, I agree with that. I agree with that. Yeah, I got my air purifier because I had people working in my apartment doing construction and I’ve kept it because hopefully it helps smog or something of that nature.
Zoe Rothblatt 09:59
And then the last two on their list was install UV air treatment systems that can kill germs in the air and use portable carbon dioxide monitors.
Steven Newmark 10:09
Yes, a portable co2 monitor helps you determine how stale or fresh the air is in a room. So I guess that would be how you would test and give these grades that Zoe wants to give out to all the buildings.
Zoe Rothblatt 10:20
I’m cracking down.
Steven Newmark 10:22
Right.
Zoe Rothblatt 10:22
The Health Advocates are giving out grades.
Steven Newmark 10:25
Right, exactly. And I don’t know what rhis means, but according to the CDC readings above 800 parts per million suggest that you may need to bring more fresh outdoor air into the space. At least there’s a there’s some kind of a guideline, at least.
Zoe Rothblatt 10:37
Yeah, that is interesting as air quality is I’m so curious about fall boosters, I saw some talk about, you know, maybe eliminating the original strain from the booster, what’s going on there?
Steven Newmark 10:48
Well, the World Health Organization officially now recommends a one strain booster that targets XBB, that’s the Omicron, that’s one of the Omicron sub variants, this fall. So we’re, so the recommendation is to no longer use the original vaccine, which makes sense. Of course, countries don’t have to follow what the WHO says but that’s likely where we’re headed. There’s a big FDA meeting in June to discuss what we’re going to be doing here in the United States.
Zoe Rothblatt 11:13
And this would be the first time that the original strain isn’t included in a vaccine because even when we had the updated vaccine, it was still bivalent booster. So it had the original and the new strain goes through this would be the first time it’s just entirely updated.
Steven Newmark 11:27
Turning to masks, there was a poll conducted by Morning Consult, it was taken between May 6 and May 9, and it’s found that 46% of respondents wear a mask at least some of the time in the past seven days, just looking out my window now, I was very surprised by this number, but so I’m not really sure what it means. But I do know that it is still important to improve masking amongst older adults, especially in times of high transmission which could reoccur we’re in a lull now, but you know, when things come back, hopefully the masks will as well.
Zoe Rothblatt 11:58
Definitely, yeah, I really haven’t seen a lot of masks around. I know people in our community are still masking but when I’m just out and about, it’s few and far between.
Steven Newmark 12:07
Yeah, for sure, and we’ve spoken about this before, that might be a realistic future where the masks mostly come off during a time of a lull, which in some respects makes it easier to then mask up or get folks to mask up when there’s an uptick. You’re certainly not going to have a situation where everyone is going to mask as they did at the height of the pandemic, that will never happen again. But I don’t think it’s unrealistic to say when the situation gets bad, people will put their masks up. And I think also, it’s also it has become and hopefully will continue to remain more socially acceptable or more common, or when an individual feels that they have a cold or something floating around their system to put on a mask to protect others.
Zoe Rothblatt 12:53
Definitely. I mean, that should always have been common courtesy. Like if you have a sniffle or a cough stay home, especially because I know I would sit in class sometimes and someone next to me is sick and I’m like, oh great, I’m immunocompromised, I know I’m gonna get some version of this and just feel so crappy. And you have to sometimes delay your treatment and it’s so much more than a cold when you have a chronic disease it like sometimes can flare up your underlying condition. It’s just, it should be common courtesy to stay home and mask up, especially if you’re not feeling well.
Steven Newmark 13:27
Yeah, for sure, for sure. And also some good news, it looks like we’re on track for an Evusheld replacement, there’s a phase three clinical trial that is showing promising results, and emergency use authorization could be here by the second half of this year. So that’s another more tools in the arsenal to help.
Zoe Rothblatt 13:44
That’s exciting. That’s something our community has been asking for since Evusheld lost, or was taken off of emergency use authorization or just not recommended. As a reminder, this is the preventative COVID treatment for people who are at high risk of getting COVID. So you know, it’s really exciting. The community has been asking a lot, when are we going to get something like this again? You know, does my first one still have any effects? I’m really yearning for this, so it’s exciting to see that that could be coming soon.
Steven Newmark 14:14
Yeah, excellent. A few other quick things, the risk of long COVID after a second infection, studies are showing it’s greatly reduced. It’s not zero, but there’s a new study out that’s coming out that found that the risk of long COVID after a second infection is one in 40 for those over 16 years old and one in 165 for those under 60 years old. I thought as comparison I thought this was kind of interesting, that annual risk of getting into a car accident is one in 30. So it’s less of a risk to contract long COVID after a second infection.
Zoe Rothblatt 14:45
That’s good news and simultaneously research on long COVID is ramping up.
Steven Newmark 14:50
Yeah.
Zoe Rothblatt 14:50
There are still a lot of unanswered questions and people are out there suffering and living with debilitating symptoms and it’s good that attention is still being brought to how can we help these patients?
Steven Newmark 15:03
Yeah. And one last thing I just want to mention before we wrap up, sad thing is that the COVID vaccines rates amongst children are just abysmal. There was a study that came out that said, if we had reached flu vaccine coverage levels, just this past winter, we would have prevented over 10,000 pediatric hospitalizations and over 5 million days of school absences, just by having gotten those vaccines up so you know, better luck next year. I don’t know. That’s unfortunate.
Zoe Rothblatt 15:29
Yeah, I mean, 10,000 pediatric hospitalizations. It’s not a small number.
Steven Newmark 15:33
Yeah, yeah. And every time, I’m gonna put on my old hospital hat, every time a doctor is working on someone who comes into the ER, it means that they’re not working on someone else who is also coming into the ER, their attention is diverted. So it doesn’t just affect those 10,000 individuals coming in. It affects others who are also trying to get into the emergency room as well.
Zoe Rothblatt 15:53
So true. Well, you know, what’s next? We are headed into summer, we’ve seen rates go down, we should get news, like you said, there’s a big meeting coming up about the COVID fall vaccine.
Steven Newmark 16:05
Yes.
Zoe Rothblatt 16:05
So I guess we’ll just stay tuned and wait for more, which seems like the motto of this pandemic. Stay tuned. See what’s next.
Steven Newmark 16:12
Yeah. And if you’re able to get outside and breathe in some good air away from others, which is what summer makes summer so great, right?
Zoe Rothblatt 16:22
Definitely. I know, teah, it’s nice everyone coming out and you realize how many neighbors you have. And how many people live around here because all sudden everyone’s out and walking around and breathing that good air.
Steven Newmark 16:32
Yeah.
Zoe Rothblatt 16:33
So, you know, hoping for good health for everyone this summer and beyond.
Steven Newmark 16:36
Absolutely. Absolutely.
Zoe Rothblatt 16:39
Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 16:43
Well, you know, I learned in prepping for the show how the numbers are particularly good with COVID and I was again very struck by the death count.
Zoe Rothblatt 16:52
And I learned from you about the debt ceiling and negotiations going on there.
Steven Newmark 16:59
Excellent. Well, we hope that you learn something too. And we’d love to hear from you about all of your stories, you can email us at our new email address [email protected]. We hope to hear from you soon.
Zoe Rothblatt 17:09
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, please give us a rating and write a review on Apple podcasts and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.
Steven Newmark 17:24
I’m Steven Newmark. We’ll see you next time.
Narrator 17:30
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S6, Ep8- Drug Shortages: What Patients Need to Know
In this episode, our hosts shine a light on a critical issue affecting patients all over the U.S. – drug shortages. Shortages have been reported for hundreds of drugs, and here we cover why this is happening and what you can do. We also cover the latest news on Ohio legislation to protect patients from copay accumulator adjustors and movement on the federal PBM transparency bill.
“Drug shortages is not a new problem, but currently, there are hundreds of drugs in scarce supply and that’s just hitting an all-time high for the U.S. It’s a really scary place to be in if you don’t know when the next shipment of your medication is going to be,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
S6, Ep08- Drug Shortages: What Patients Need to Know
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
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 00:17
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:22
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions live your best life.
Zoe Rothblatt 00:28
And in today’s episode, we’re shining a light on a critical issue affecting patients across the US – that is drug shortages. But first, we do have a news update on our work in Ohio to help bring protections against copay accumulator adjusters.
Steven Newmark 00:44
Yes, excellent. The bill we’re advocating for in Ohio was just officially reintroduced yesterday in the Ohio House as House Bill 177.
Zoe Rothblatt 00:52
So this bill, it’s great, it’s identical to others that have passed in 17 other states. So it’s always good to see that model legislation being used. And it’s working its way federally through Congress as the HELP Copays Act. So it’s good to see momentum around the country as we try to get this passed in Ohio.
Steven Newmark 01:10
Absolutely. Absolutely. I also do want to mention in the house of representatives in Washington, the House Energy and Commerce Committee unanimously advanced the package of health policies that will strengthen price transparency rules for hospitals and insurers, and most importantly, for our listeners will increase scrutiny over pharmacy benefit managers or PBMs.
Zoe Rothblatt 01:29
I was gonna say that’s, you know, great news in the states and great news federally.
Steven Newmark 01:33
Absolutely, so that’s where we are. We’re in Washington, but we’re in all 50 states. And that’s why we advocate, that’s why we do what we do. So hopefully, some of this legislation will become law.
Steven Newmark 01:42
And what’s the next step for the PBM transparency? Who has to review it next? Or what do we think the likelihood of passage is?
Steven Newmark 01:49
So yeah, it advanced out of committee, so it goes to the full house. So we have to hope that it gets attached to a package or at least, or perhaps gets voted on as a standalone measure and in the full house, and if it passes there and then goes on to the Senate and passes there, then it gets reconciled. But that’s a whole other thing, before it finally gets to the President’s desk.
Zoe Rothblatt 02:08
Okay. Well, you know, we’ve talked about this a lot, little increments are pretty big when it comes to policy, and it’s great to see it moving forward.
Steven Newmark 02:15
Absolutely. Absolutely. Well, let’s turn now to our topic for today, something that has been in the news, and is certainly of interest to folks. This should be of interest to all Americans, but certainly those who are listening to our program, and that topic is drug shortages. So drug shortages occur, obviously, when there’s an inadequate supply of medications to meet the demand.
Zoe Rothblatt 02:34
And this impacts people because obviously, it leads to delays in treatment. Sometimes it means inadequate dosing, if someone’s trying to space out the medications, they already have to last or even a complete lack of access altogether to essential medications, because there’s just no end in sight for when the shortage will be over. It’s so important for patients to have regular access to treatment. And It’s a really scary place to be in if you don’t know when the next shipment of your medication is going to be.
Steven Newmark 03:05
Yeah, absolutely. It’s definitely a frustrating feeling to know that your medication is due for a refill as an example, and you’re being told it’s on backorder or whatever the case may be, you know, so what causes these drug shortages? What’s going on?
Zoe Rothblatt 03:16
So yeah, generally, there’s many reasons that can contribute to drug shortage. Number one could be manufacturing issues directly where the drug is coming from. There’s also supply chain disruptions. We definitely saw this in COVID. And then there’s also a high demand, like, remember, in COVID, we saw an increase in demand for hydroxychloroquine. And people were taking it and it took it away from people that needed it most. There could be regulatory challenges. There’s a lot of factors at play when it comes to drug shortages.
Steven Newmark 03:47
Yeah, for sure. So what’s happening now?
Zoe Rothblatt 03:49
Well, like we said, drug shortages is not a new problem, but currently there’s hundreds of drugs in scarce supply and that’s just hitting an all time high for the US. So these drugs include critical drugs for cancer care. I think that’s the one people are most focused on right now. But others on the list include sterile fluid for injections, some antibiotics, ADHD medications and children’s Tylenol.
Steven Newmark 04:13
Yeah, very scary. I saw that the American Cancer Society warned earlier this month about potentially life threatening supply problems of chemotherapy drugs, which don’t have an effective alternative.
Zoe Rothblatt 04:24
That’s scary, you know, don’t have an effective alternative. These are people’s lives. I’m sure we all know someone that’s impacted whether it’s cancer or by a condition, and it’s scary to hear that phrase, there’s no effective alternative. And when you’re living with a condition, especially something like cancer that can be so life threatening, you really don’t want your doctor like having to experiment with alternatives simply because of a drug shortage when you know that there are medications that can help.
Steven Newmark 04:51
Yeah, so what’s going on? What’s the reason for these challenges?
Zoe Rothblatt 04:56
It’s a good question. You know, there’s a few reasons so some are just the old fashioned supply and demand challenges like children’s Tylenol, for instance, one on the list after we had this big flu, RSV and COVID season, yeah people stocked up, Tylenol was in demand and now we’re seeing the effects of it. So, a lot of experts are pointing to the generic drug market. We know that when it comes to medications, there’s a brand name and once it loses its patent, often a generic version comes out, that’s much cheaper, and generics account for 90% of all drugs in the US. And in a few cases, we said high demand or over prescribing may be to blame. But for the most part, the drugs that are in shortage, are in short supply, are from this generic drug list. So experts are saying, well, what’s going on in the generic market that’s causing all of these drugs to be in short supply? And there’s a number of factors that could be contributing, you know, one of the makers of Adderall, which has been in shortage announced plans to scale back its generic business because of low profitability. Lidocaine is in short supply, and the manufacturer there announced a financial restructuring.
Zoe Rothblatt 06:11
So it’s a lot, it sounds like there’s a lot of little things that are contributing, that are maybe disconnected perhaps, particularly when you’re dealing with the generic industry. You’re talking different manufacturers have different reasons. But all in all, it’s contributing to this overall, dare I say chaos.
Zoe Rothblatt 06:29
Exactly. So what happens next? How do we deal with this? Of course, the Biden administration has to get involved players like the FDA, and they are all looking at it. The Biden administration has assembled a team to find long term solutions for you know, making sure that we have a smooth running pharma supply chain. The FDA, they have a team that works day to day to mitigate and report on drug shortages, you can go to their website and type in drugs and look at what’s in shortage, like they’re really on top of reporting that and they’re looking into what additional information they can gather. There’s also four Senate bills with bipartisan support that could help get generic drugs to market more quickly by addressing different tactics or loopholes that cause delays. So there’s definitely attention being drawn to this issue. But a lot of it right now is information gathering and figuring out the exact cause of what’s going on here.
Steven Newmark 07:24
All right, that good that they’re gathering the information. Most importantly, what do you do if you’re affected or potentially affected? And what can you, let’s take it into two steps. What can you do if to prepare yourself? Some of the basics, knowing your medications, know what alternatives might exist? Talk to your doctor, am I on the right path, Zoe?
Zoe Rothblatt 07:43
Definitely, I would say yeah, definitely talk to your doctor, number one. Even if you’re a drug isn’t on a shortage list right now. And I don’t want to scare people. Like I’m not saying your drug will be on the list.
Steven Newmark 07:55
Right right right, no, of course.
Zoe Rothblatt 07:56
But definitely just talk to your doctor say, you know, I heard The Health Advocates talking about this, is this something that could impact me? And if so, what’s our plan, and it’s just great to talk about options ahead of time. So you can really get comfortable with it before you’re faced with it, and often just like it’s a high stress anxiety situation, and you feel like you don’t have a lot of control. So just talking to your doctor about options and alternatives ahead of time is really helpful.
Steven Newmark 08:22
Yeah, absolutely. I would also add to that, talk to your pharmacist, I mean, I have personal experience where a pharmacist, I ran to a drug shortage and a pharmacist recommended or alternative to which I said absolutely not, I like my drug the way it is, damn it. I lucked out, it was able to arrive before I needed it. But I actually subsequently saw my doctor and I mentioned that to her, and she said yeah, yeah, you could have certainly taken this other drug, I would have sent that prescription over in a heartbeat. That’s that would have been fine. So you know, it’s definitely good to talk to your health providers and I would include pharmacists in that conversation as well.
Zoe Rothblatt 08:55
And your pharmacists also may have an idea of when a next shipment could come in or stuff like that, and give you a little foresight into timelines on different delays.
Steven Newmark 09:04
Yeah, yeah, you know, I always get the largest quantity that I’m able to get of a supply of a drug. So sometimes that’s 90 days, sometimes it can only be 30 days, depending on the drugs and for reasons, honestly, with all of our policy expertise, I don’t know why that is, but when I’m able to get a 90 day supply, I always do so.
Zoe Rothblatt 09:24
Me too. I noticed that in COVID actually, that was the first time I was able to start regularly filling 90 day supplies and for most of my medications, it’s stuck and it’s really nice to be able to do that. And it wasn’t like a benefit that was told to me, one day my doctor just tried it and it worked. So it’s always good to just try these things and see what your health plan will cover.
Steven Newmark 09:45
Good tips, you know, hopefully folks are okay and just staying on top of things like this and once again, talking to your provider if something were to happen, look for alternatives and you know, knock on wood that everyone will be okay.
Zoe Rothblatt 09:58
And as always advocate, you know, speak up and share your experiences, call your local elected officials and let them know that their sense of urgency around this issue, encourage them to support legislation that helps bring access to medications. Because, you know, we always talk about how important it is for legislators to hear the story, they can see these things in the news, but to know that it’s impacting real people and their constituents makes such a difference.
Steven Newmark 10:23
Absolutely. Well, this has been great, I think, informative. You know, before we wrap up, I should mention we’re recording this right before Memorial Day weekend. So we hope that folks are able to have a nice three day weekend and, of course, on Monday, we hope that everyone takes a moment to think about those we’ve lost in service to our country.
Zoe Rothblatt 10:42
With that, bring out your white pants and enjoy the start of summer. Well Steven, that brings us to the close of our show, what did you learn today?
Steven Newmark 10:51
Well, I learned from you and I had known about these drug shortages, but I didn’t know that ties to the generic market and how it affects it. So thank you for educating me and our listeners on that.
Zoe Rothblatt 11:01
And I learned about momentum around the PBM transparency. I hope it passes. And by the way to our listeners if you have learnings or any questions for Steven or me, we’ve set up a new email address for all of our podcasts series, which is [email protected]. Send us your questions, your thoughts, suggestions on topics, we’d love to hear from you.
Steven Newmark 11:23
Excellent. Well, we hope that you learned something today. And before we go, we definitely want to encourage everyone to check out all of our [email protected]/listen.
Zoe Rothblatt 11:33
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, please give us a rating and write a review on Apple podcasts and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.
Steven Newmark 11:48
I’m Steven Newmark. We’ll see you next time.
Narrator 11:53
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
S6, Ep7- Loneliness: A Public Health Crisis
U.S. Surgeon General Dr. Vivek Murthy recently announced a new crisis that is unfolding – “the epidemic of loneliness and isolation.” The hosts discuss the impact of loneliness, the reasons for the rise in social isolation, and break down the framework for proposed solutions. This episode also covers the latest news on The Safe Step Act, and quick poll results on chronic illness patients’ plans to get the second bivalent COVID booster.
“A new report from the Surgeon General says that social isolation’s effects on mortality are the equivalent of smoking up to 15 cigarettes a day,” says Steven Newmark, Director of Policy at GHLF.
S6, Ep07- Loneliness: A Public Health Crisis
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
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 00:18
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:22
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 00:28
And today we’re going to talk about a new public health crisis unfolding across the United States that is of loneliness. First, we do have a few news updates on the Safe Step Act and our latest quick poll results on the bivalent booster. So, let’s jump into that. Steven, what’s happening with the Safe Step Act?
Steven Newmark 00:47
Yeah, so some good news – After over six years of hard work from patient and provider advocate communities around the country, the Safe Step Act was included in a piece of legislation that is passed out of a Senate committee and it has real momentum at becoming law. Senator Lisa Murkowski, Republican of Alaska, introduced the Safe Step Act as an amendment to a large pharmacy benefit manager reform bill that is being led by Senators Bernie Sanders and Bill Cassidy, the chair and ranking member of the Senate Health Committee that’s, Health, Education, Labor and Pensions Committee.
Zoe Rothblatt 01:17
So this is really exciting and it’s the same bill text as the act has been all along, it’s just included in a larger bill, which helps bring it momentum. So Steven, what’s the next steps for this bill?
Steven Newmark 01:29
I’m glad you asked. The next step for this bill is for it to receive a committee vote and then a full Senate vote before heading to the House for the process to start new in that chamber. I don’t know if you remember that from the great cartoon when a bill becomes a law. Excellent cartoon for those.
Zoe Rothblatt 01:44
Oh yes.
Steven Newmark 01:45
So bills that are led by the bipartisan leaders of the committee do have the best chance of actually taking these steps. So with bipartisan support, we’ll see where it goes. We’re not just going to sit back and be passive observers, of course, but we’re going to do everything we can to ensure that the next steps are taken. The Safe Step Act is a relatively small part of an overall bill so the likelihood that will be cut during the amendment process is slim, because its fiscal impact is quite small. And with over 100 sponsors of the Safe Step Act already in the House, it has an even smaller chance of being cut there during any possible discussions. So we’ll see what happens all in all, where we are right now, this is a huge accomplishment for the advocacy community. But we still have a lot of work to do before this bill becomes a law.
Zoe Rothblatt 02:26
Definitely. And for everyone that’s advocated for step therapy reform, whether as part of this bill federally or also within your own state, it’s definitely helped increase the momentum with states passing laws to help get federal protections and just you know, thank you to everyone in the community has been advocating for so long, and now we get to see the fruits of our labor and see action being taken.
Steven Newmark 02:49
Yeah, absolutely. So we shall see. And we shall continue fighting until it becomes law and signed by the President.
Zoe Rothblatt 02:55
Definitely switching gears a little bit, I have the updates from our latest COVID-19 Patient Support Program quick poll.
Zoe Rothblatt 03:02
This one was about the second bivalent booster. So we talked about this a few episodes ago probably about how a second booster was authorized for people over 65, and people with compromised immune systems. So we wanted to know our community’s plans on getting this booster. And here’s what we found out. Only 12% said they don’t plan on getting it, nearly 43% said that they plan to get it, 22% said they already got it and the other 22% are going to speak to their doctor.
Steven Newmark 03:02
Let’s hear it.
Steven Newmark 03:33
Excellent.
Zoe Rothblatt 03:33
That was really interesting to hear about our community’s plans and that everyone is getting protected and feeling good about it.
Steven Newmark 03:40
Yeah, as folks should. So that’s that puts us in a good place.
Zoe Rothblatt 03:44
And for those who said no, in the free response section, they were able to elaborate and people just mention how they got side effects from the vaccine or it flared their disease or it’s been a lot of shots. Those were some of the common reasons that came up, which is understandable. But I definitely encourage everyone to at least talk to their doctor about these options and what’s right for them.
Steven Newmark 04:04
For sure. All right. Well, let’s get into our main topic for today, which is about loneliness. A new report from the Surgeon General says that social isolation’s effects on mortality are the equivalent of smoking up to 15 cigarettes a day. And I do know from health class in high school that smoking 15 cigarettes a day is definitely not a good thing.
Zoe Rothblatt 04:23
Definitely not. It’s interesting that we’re able to assess that something so physical as smoking to something more, I guess, you know, a mental emotional state of social isolation. There are physical aspects, of course, but wow, that’s shocking to hear that those two are equivalent.
Steven Newmark 04:41
Yeah, research on social isolation and loneliness finds that it contributes to a person having a higher risk of heart disease, stroke, anxiety, depression and dementia, and it makes people more susceptible to infectious diseases. Reports from the Surgeon General are usually reserved for urgent public health issues that require immediate action. So the fact that this report came out from our what we call the nation’s top public health official is a pretty big deal.
Zoe Rothblatt 05:03
Well, yeah, it definitely is a big deal. I’m glad that issues like this are coming to the forefront. Especially, I believe everything you just said about higher risk of these conditions. As someone who is chronically ill, and I hear it a lot from our community, we know how intertwined mental and emotional health are with physical health. And sometimes it’s hard to quantify that or there isn’t exactly treatments that go for both all the time and it’s great to hear a public health leader talking about this so we can get some solutions.
Steven Newmark 05:33
Yeah, it is fascinating. Having read the report myself, I’m not totally shocked and although I was surprised that the report heavily emphasized that its findings were based on trends that were taking place before the pandemic, and they were exasperated during that period of isolation of the pandemic. It was very strongly emphasized in multiple places around the report that these are not due to the pandemic, but if anything, was only exasperated by the pandemic. So let’s get into it. Let’s see what they did. The advisory itself breaks down the measures of social isolation and loneliness in the United States, how they can affect people’s health and introduces recommendations about how to alleviate the epidemic of loneliness. So here are the reports main takeaways. So we’ll start with the first one, Americans are lonelier and more isolated than ever, yet Americans are experiencing more loneliness and isolation than at any time in recent memory. As I said, the trends were underway well before the COVID-19 pandemic, though, of course, living through three years of a public health crisis has likely accelerated these issues, at least for some folks.
Zoe Rothblatt 06:31
And did they talk about how they’re defining loneliness?
Steven Newmark 06:35
Yes. So taking a step back social isolation is an objective measure of lacking connection to family, friends and communities. And loneliness is more is a subjective measure, almost through surveys, like we do a subjective measure of feeling disconnected, generally.
Zoe Rothblatt 06:49
Okay.
Steven Newmark 06:50
And the findings found the findings in the report said, half of Americans say they experienced loneliness, less than 40% said in a 2022 study that they felt quote, very connected to others. Again, It’s subjective and the reports note that a certain amount of solitude even can actually help people become more resilient and has some positive effects. But more objective measures of social isolation also reveal that we’re increasingly feeling more and more isolated from one another.
Zoe Rothblatt 07:16
I was just thinking about how in this day and age, you would think with all the technology we would be even more connected and how this would decrease. And then…
Steven Newmark 07:24
Yeah.
Zoe Rothblatt 07:24
My second thought was, well, Zoe, remember, in COVID, there was all these great virtual options for people and slowly they’ve disappeared and so many people in our community, I know, these studies aren’t specific to our community, but I’m always thinking about our community. And so many people in our community are still isolating and taking more precautions than the general public and a lot of us are upset that the virtual options have gone away. And I definitely think that contributes to these statistics.
Steven Newmark 07:51
Yeah, that that can be a factor. I actually heard an interview with Dr. Murthy, where he talked about the pre pandemic, one of the ways he found himself actually, you know I’m not spilling the beans on the good doctor, because he said this in a very public forum, he said that he experienced his nadir, if you will, in 2018, feeling loneliness, which was where it was first brought to his attention. And one of the ways he helped dig himself out was he got together with two of his friends. So a group of three, and they would get together virtually and again, this was pre pandemic, they would gather virtually, and meet and discuss I don’t remember if he said weekly or monthly, but it was one of the ways he dug out getting together with close friends, even though he couldn’t do so in person, he was able to do so virtually and keep conversations flowing. And probably I don’t recall exactly what he said, but probably, you know, to dive deep and talk about what they were experiencing and help them and help each other out.
Zoe Rothblatt 08:44
Definitely, I actually started something similar with one of my friends we’ll press play on the same show or movie at the same time and talk about it. So it’s yeah, it’s connecting virtually, and it helps like having a plan and reducing that loneliness, for sure.
Steven Newmark 08:58
Yeah, no, for sure. I mean, the other thing about being online and connected and hyper connected, the report does talk about social media and inherent in the phrae social media is the word social, you know, there are a lot of negative effects of social media, as I think most folks are cognizant of these negative emotions that can run deep. It’s not truly connecting you necessarily to people, you’re not actually engaging or interacting. Not to mention sometimes you see very curated lifestyles on Instagram and …
Zoe Rothblatt 09:29
For sure.
Steven Newmark 09:29
It can have a negative effect on you. That said, there is a positive side of course to social media. Groups that have been traditionally marginalized, particularly groups and groups that are in if I will say small numbers in certain communities are able to find a community online in a way that they may not be able to in their physical community. And I think it’s fair to say that certainly holds true for people living with chronic conditions. The online community, one of which is our online community can be a home can be a place is where folks can come together and feel a little bit less isolated. And I think it’s, it is one of the great services that an organization like a GHLF provides. But you know, you have to take the good with the bad and try to accentuate the good if you’re going to be using social media and be aware of its downside as well.
Zoe Rothblatt 10:14
Of course. Taking a step back a little bit, we talked about how the loneliness and social isolation started a bit before COVID, not necessarily a result of the pandemic. So what are some of the other reasons for this increase in isolation and loneliness?
Steven Newmark 10:29
Yeah, well, I mentioned technology, that’s a big deal and all that. Americans are less likely to belong to organizations. Number one being religious organizations, historically, Americans tended to be active religiously, even if they were not, quote unquote, “religious beings.” Being a part of your local church, synagogue, mosque, was a place of social interaction, and certainly a sense of community with numbers. Those numbers have decreased precipitously, local organizations, like I don’t know what you call it, the Elks club, things like that, I don’t know what you call those groups, those are not as popular as it used to be. For kids groups like the Girl Scouts, Boy Scouts, groups that really existed just to almost be places to socially engage, or have lost in terms of popular culture, if you will.
Zoe Rothblatt 11:15
Yeah, you know, it’s so interesting to think about that slowly those things have just like quietly slipped away without you even realizing it and now here we are today, where we’re having the Surgeon General come out and say that we need to fix loneliness. So what is the next step?
Steven Newmark 11:31
Yeah, well, you know, there are other places too. People used to be more, Americans generally were more engaged in their communities more engaged I don’t want to say politics per se, but engaged in being a part of building their communities, a lot of that takes place online now. A lot of it can be vitriolic online, which is actually discouraging to getting people more active as a result. So okay, before we get to what we can do to address let’s also talk about the second major takeaway from the report, which is that loneliness and social isolation affect not just a person’s health, but it also affects the report found that it actually affects the community’s health, which is quite fascinating. So not surprisingly, what we’re talking about isolation and can contribute to a person feeling higher amount of stress, which affects emotional well-being, mental well-being as well as causing the body to release stress hormones. So that’s on the individual level. However, the report also concluded that social isolation in a community actually results in the community at large are having a decrease in life expectancy and higher rates of heart disease, stroke, hypertension, many other illnesses.
Zoe Rothblatt 12:36
Wow.
Steven Newmark 12:36
Yeah, sorry, sorry, to be a downer.
Zoe Rothblatt 12:38
Well, it’s just interesting because when you think about loneliness, like you really think about that as a personal thing, and you’re feeling the loneliness and isolation, but then to say, a community could be feeling that experience together. It’s just so interesting to say community is together and feeling the isolation, and it also causes all these tremendous health issues.
Steven Newmark 13:01
Yeah, absolutely. Which is why it’s being taken so seriously by the surgeon general. You know, another thing I think worth noting is the report itself was focused on the United States. And while things like this may be happening elsewhere, it did touch upon discussions of some other countries and not all countries are experiencing that. The United States is a very individualistic country, we pride our individualism, we pride success based upon the individual. That is somewhat foreign to other countries, if you will, I mean, Alexis de Tocqueville wrote about this way back when, you know, this is who we are as a nation, but it’s gotten to the point where it’s become an issue worth addressing, because it’s affecting our physical health as well.
Zoe Rothblatt 13:42
And to address it, the report mentioned these six pillars. It’s sort of a framework it’s not, you know, a perfect solution mapped out just yet, but there are six pillars to help Americans feel more connected and less isolated from one another. So let’s go through them one by one.
Steven Newmark 13:59
Okay, so the first of the pillars for making Americans feeling more connected and less isolated. Number one is strengthening the social infrastructure creating more communal spaces, more social activities, and better infrastructure to help people access these. So in other words, there should be more places where people to socialize and gather.
Zoe Rothblatt 14:17
And I also want to add, like a better job that I don’t know like, familiarizing each other with those spaces and talking about it more, inviting friends to spaces like I think one is that of course, we need leadership setting up these spaces, but I’m thinking about what could you do on an individual level, invite one friend to come to a new thing with you and just reach out to each other.
Steven Newmark 14:40
Totally, totally. Yeah, that’s actually a big one. Just the idea of talking to your friends. I mean, one of the things that I saw commentary about the report say when somebody calls pick up the phone, I mean, how often does somebody call and you look at your phone, like, I’m not picking up the phone. Who is this person calling without texting me first to give me a warning? But little things like that just picking up the phone and actually having a human to human conversation for a few minutes can go a long way.
Zoe Rothblatt 15:04
It certainly can. I mean, even think about how, I mean I can only speak for myself, but I get so energized after we do these recordings. And you know, we only get to interact with our listeners in a limited capacity but even hearing from all you all, you guys, when you leave comments and email us like, it’s definitely such a community in it of itself.
Steven Newmark 15:23
Yeah, I talk in social circles about how I miss adult interaction, because so much of work has become remote. And being on a Zoom call, I mean, I’m very fortunate that I have a job that I can work remotely that I could be on Zoom and conduct meetings in that fashion, but you miss a lot. You know the meeting starts, you’re lucky to get a perfunctory 10 seconds of “hey how are you”, but right into the meeting and the meeting ends and you press X and that’s it, and you go to your next meeting. Whereas in the olden days, or if you’re fortunate enough to be able to have more in person interactions before the meeting actually starts, you can have some social interactions with the people that are in the room, maybe before or after and you know, it helps foster that.
Zoe Rothblatt 16:04
Definitely. So number two on our list, develop pro connection public policies that account for the need to foster connection when passing laws or formulating regulations this includes anything from transportation to education to housing.
Steven Newmark 16:19
Yeah, essentially getting people to get together more, you know, sharing, carpool, whatever. Number three, mobilize the health sector and train healthcare providers to identify people at risk of isolation and better equip health providers to connect patients with other forms of social support they may need.
Zoe Rothblatt 16:35
This is so needed, we actually it’s Arthritis Awareness Month and Mental Health Awareness Month, and we asked on social media about if people bring up their mental health to their rheumatologist and a lot of people said that there isn’t time or their rheumatologist says, “talk about that with your other doctor.” So we definitely need better resources at our current health care providers to connect us to the next resource or just help us get the support we need.
Steven Newmark 17:01
Yeah, absolutely. Absolutely. All right. Number four, reform digital environments. Not surprising, require more transparency from large tech companies and establish safeguards such as restrictions for young people that can help ameliorate some of the worst effects of social media on vulnerable populations.
Zoe Rothblatt 17:17
Yeah, it sounds obvious, but how do we actually get that done?
Steven Newmark 17:21
Yeah, It’s a tough one. And the reports spent a lot of time talking about the particularly the effects of social media on minors, which, you know, we’re not gonna spend too much time talking about here, there is legislation that would require verification of someone’s age, when they’re under 18, would require parental approval, it would require actually folks who are under the age of 13, to be unable to access social media sites. And for people between the ages of 13 and 18, to have parental approval in order to access social media sites. How is that going to actually be verified? I don’t know.
Zoe Rothblatt 17:53
We’ll see. We’ll wait to hear more.
Steven Newmark 17:55
Right. Yeah, It’s funny. I don’t know if you ever got on a website for like, like, Budweiser or an alcohol company, they asked you to plug in your date of birth?
Zoe Rothblatt 18:03
Yeah. Are you 21? Yes.
Steven Newmark 18:06
So I don’t know how effective that is. But you know, I guess, start somewhere. And I mean, technically, if the safeguards are not strong enough, and they’re finding folks are getting around it, they can invite themselves up for more scrutiny and more, which is not something that big tech wants. So we shall see.
Zoe Rothblatt 18:21
We shall see. Okay, moving on, number five.
Steven Newmark 18:24
Deepen our knowledge, support, academic research, and public information campaigns to improve our understanding of the connections between isolation and health and make people more aware of the problem in the first place. So we are doing that right now. We are making people aware of the issue and helping to spread that. So Dr. Murthy, we’re doing our job here on The Health Advocates podcast.
Zoe Rothblatt 18:44
This feels like the core of public health to me, doing more research, information campaigns, letting each other know, this is what public health is all about.
Steven Newmark 18:53
Yeah, it’s like cigarettes, you know, first step is finding out that they’re bad for you. Second step is doing dozens upon dozens of more research to confirm that it’s bad for you. But then when a tree falls in the forest, you got to make sure someone hears it, so you have actually have to do the public campaigns to let folks know the ill health effects from smoking. And as a result, our smoking rates are way down versus what they had been in the past. Right?
Zoe Rothblatt 19:17
Yes. And hopefully we can get there with isolation. Lastly, we have number six, which is cultivate a culture of connection. So just really reinforcing the values of connection and reducing the polarization that can lead to people feeling more isolated. We know that we’re so polarized these days, like…
Steven Newmark 19:35
Yeah.
Zoe Rothblatt 19:36
In politics, of course, and we’ve seen it a lot in COVID. But you know, it’s also come up in a lot of other ways, even simple social things. Like if you don’t watch a TV show, you’re totally isolated from that conversation all that sudden, you know?
Steven Newmark 19:49
Right, although I was thinking about it in a different way, when it comes to pop culture. I felt like I felt like decades ago, most people did watch particular TV show, whatever the show du jour was and then you come to the office the next day or work and go to the watercooler and you chitchat about the show. Now the shows are all over the place. And people have such curated lists of what they watch. And it actually can foster connection, if you watch the show Succession and you’re a diehard fan, you got five people in your office who are diehard fans, the six of you are going to have some great connection there. But I think about it more with pop culture, the polarization, if you will. When I was a kid, I had records and cassettes dating myself of certain music, but I still listened, I still knew what everything was in the top 40, I had heard everything because you listen to the radio and that’s just It’s somewhat universal. Whereas with Spotify, and all these other things that we use, not everybody gets exposed to the same music, I was always exposed to music that I wasn’t interested in, in listening to if that makes sense.
Zoe Rothblatt 20:51
Yeah, that makes sense. Well, definitely right now is the moment to become a Swiftie, because…
Steven Newmark 20:56
Okay.
Zoe Rothblatt 20:57
The whole Swiftie community is together online, like looking at the same things that happen every weekend at her tour. And it kind of is exactly what you’re talking about everyone coming together talking about…
Steven Newmark 21:11
Yeah.
Zoe Rothblatt 21:11
The little neat tricks she did on stage or the surprise songs, or who got the hat this week. And it’s really fun to all be in it together, even with strangers, just seeing what they’re talking about.
Steven Newmark 21:22
Well, that is like a community, you know, I have my music that I like, and when I go to the concerts, part of what you’re paying for it is that community connection that everyone’s there. And it is interesting, because I’ve also go to concerts of bands that I am not a diehard fan of and I do feel like what’s what these people, they are like in a cult. There’s a fine line between a good social connection and a good cult. Yes, but ya no, that’s certainly a place where people can feel connected, you know, you have a shared interest. I don’t know if that can replace religion, or as a place for us to gather as Americans. But I was gonna say it does whether we like it or not. But yeah, you know, at least at least with music, it’s benign, I’ll say that.
Steven Newmark 22:00
Yes.
Zoe Rothblatt 22:00
For sure. Well, you know, we have these six points. They’re really big undertakings and this is just scratching the surface.
Zoe Rothblatt 22:01
So we’ll see how things develop. But it’s always good to get the conversation started, especially from such a high ranking official.
Steven Newmark 22:17
Yes. We thank Dr. Murthy, for getting the conversation started. And we thank you for listening and being a part of our community and making us feel less isolated.
Zoe Rothblatt 22:24
Oh, yes, I will second that any day of the week. Okay, Steven, that brings us to the close of our show. What do you learn today?
Steven Newmark 22:32
Well I learned a lot. When it comes to loneliness, I think just being here and being with you, and just talking things through, it helps me on a personal level, be less lonely, and I’m appreciative of that appreciate about the connections that I have. And I think going forward, I’m going to try to be even more appreciative and because I know that it’s for my own health, so there’s that.
Zoe Rothblatt 22:51
Yeah, that second part, actually, what you said is trying to appreciate it more just recognizing it is so important. So often we go through the day and don’t recognize little moments and it’s definitely worthwhile to take a step back and take it in. For me my quick learning was just about the Safe Step Act and the momentum there and hopefully we’ll see passage.
Steven Newmark 23:13
Well, we hope that you learned something, too. And before we go, we want you to encourage everyone to check out all of our [email protected]/listen.
Zoe Rothblatt 23:21
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 liked this episode, please give us a rating and write a review on Apple podcasts and definitely check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 23:37
I’m Steven Newmark. We’ll see you next time.
Narrator 23:42
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S6, Ep6- Moving Beyond the COVID Emergency: What It Means for Your Health Coverage
This week our hosts discuss the end of the COVID-19 public health emergency declarations in the U.S. by the World Health Organization (WHO). They dive into what this means for public health and access to vaccines, testing, treatments, and data collection.
“The emergency phase is over, but sadly, as we know, COVID itself is here to stay. On recommendation from the Emergency Committee, the WHO is setting up a review committee to advise on the creation of recommendations for countries on the long-term management of COVID,” says Steven Newmark, Director of Policy at GHLF.
S6, Ep06- Moving Beyond the COVID Emergency: What It Means for Your Health Coverage
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
Welcome to The Health Advocates a podcast that breaks down major health news of the week and help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:18
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:23
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 00:29
And today, we’re gonna talk about the end of the public health emergencies here in the US for COVID. And the recent World Health Organization announcement, you know, what will change and what it means for our community and public health at large?
Steven Newmark 00:42
Yeah, excellent. So, let’s get into it. The World Health Organization has announced that it’s ending the COVID global health emergency just last week, they declared that COVID is quote, “no longer constitutes a public health emergency of international concern.”
Zoe Rothblatt 00:57
And this decision was made as all these decisions are by a panel of experts and majority agreed that COVID no longer meets this criteria of public health emergency of international concern. And It’s not to say, you know, COVID doesn’t exist anymore. Of course, the virus exists, it’s just not in this heightened state.
Steven Newmark 01:18
Right, essentially they are saying the emergency phase is over but sadly, as we know, COVID itself is here to stay, you know, on recommendation from the Emergency Committee, the WHO is setting up a review committee to advise on the creation of recommendations for countries on the long term management of COVID.
Zoe Rothblatt 01:34
So, that’s really good to hear that although the emergency phase is ending there’s still plans for this next phase and navigating it together and how to manage COVID going forward.
Steven Newmark 01:44
Yeah. So let’s talk a little bit about what this all actually means. What changes are coming, and let’s begin with the vaccines, the COVID vaccines.
Zoe Rothblatt 01:52
Yeah, we’ve actually got a bunch of questions about this from our community, especially because the second bivalent booster was just authorized for our community. People have been emailing and asking us if vaccines are still going to be available for free or at what cost and what’s going to happen given the end of the emergency this week.
Steven Newmark 02:11
Yeah, well, as you know, the federal government has been supplying COVID vaccines, including boosters free of charge to everyone regardless of insurance. Now, this is not expected to change just yet, but may change if the government does not replenish its stockpile of vaccines, not to mention its funding for vaccines. So something that probably can’t be counted on particularly the latter.
Zoe Rothblatt 02:30
And until the stockpile is depleted, people enrolled in certain Medicare programs and most private insurance should still be able to receive vaccines from in network providers with no out of pocket costs. Medicaid members will have vaccines covered without copays through September 30, 2024. And Medicaid will also continue to cover future boosters that are recommended by the CDC.
Steven Newmark 02:55
The Provider Relief Fund, which has supported free vaccines, tests and treatment for individuals who are uninsured was exhausted unfortunately, over a year ago in April of 2022. Late last month, however, the Department of Health and Human Services, HHS announced a $1.1 billion public private partnership to maintain COVID vaccine access as well as some treatments such as antiviral medications for the uninsured. And those funds are expected to last through December of 2024.
Zoe Rothblatt 03:20
Okay, so bottom line for vaccines for now, things are still going to be operating as usual.
Steven Newmark 03:26
Yeah.
Zoe Rothblatt 03:26
But I would say definitely check in with your insurance before you get one just to make sure it’s in coverage or just to be totally aware of what’s happening.
Steven Newmark 03:35
For sure. So, let’s talk about treatments and medications.
Zoe Rothblatt 03:38
Right. We’ve gotten these antivirals that have been authorized during the pandemic that have been extremely life saving, especially for our community who’s at risk for severe COVID. It’s been amazing to have access to these and many are wondering, will I still be able to get these for free?
Steven Newmark 03:56
Well, similar to the vaccine stockpiles, when the supply runs out, manufacturers will set prices for the medications and any additional charge to consumers will depend on individual’s health care plans.
Zoe Rothblatt 04:07
So it kind of seems like it’ll depend on your plan, just like any other treatment or medication, you know, just how it goes regularly for other types of medications.
Steven Newmark 04:16
Exactly, exactly. So you’ll have to check with your provider, you’ll have to check with your specific plan. If you know something happens and you need to obtain medication for those on Medicaid. They will continue to cover treatments at no cost to patients through September 30, 2024. Afterward, the coverage is going to vary state by state, however.
Zoe Rothblatt 04:35
And for people with Medicare, plans that include drug coverage, we’ll continue to have COVID medications covered without costs.
Steven Newmark 04:43
Great. So next, what about the COVID tests?
Zoe Rothblatt 04:46
Oh, boy, Steven, we’ve loved getting the free tests through the government.
Steven Newmark 04:51
Yeah, it was good. It was helpful. Anecdotal story, I was meeting a friend last week and he had some sniffles and he said let me just test to make sure were low and behold, he was positive. So we didn’t meet. So you know, tests still have a value.
Zoe Rothblatt 05:05
Totally. Thank goodness you guys thought of doing the test and had it available. I am seeing some articles depending on what our episode comes out or not how useful this advice is. But before the emergency, you can stockpile or get your supply if you hadn’t yet.
Steven Newmark 05:21
Yeah.
Zoe Rothblatt 05:22
Before it ends and you can still cash in on those like eight free tests a month for your insurance. I’m not exactly sure what it is.
Steven Newmark 05:29
Yeah.
Zoe Rothblatt 05:30
It might be a good idea to get a few now, although remember to check the expiration date because tests do expire.
Steven Newmark 05:36
Right, tests expire, use the older ones first, and so on so forth. Yeah, like I said, I mean, I think that they are still useful if you’re going to be an enclosed environment, and with one or more people and you think someone is developing an illness, test and to be safe, but you know, so we’ll see, we’ll see the future of tests. Hopefully, we’ll get a multitask at some point, something that tests for both flu and COVID simultaneously at-home. But anyway, in terms of the public health emergency ending private insurance companies will no longer be required to cover both at home and lab COVID tests for free. So any out of pocket costs for individuals will depend on your specific plan.
Zoe Rothblatt 06:15
And for Medicare enrollees on certain plans will also have to pay for at-home tests. But laboratory tests ordered by healthcare providers are still fully covered by the dederal insurance program and Medicaid will cover tests without charge similarly until that date, September 30, 2024. And then coverage will depend on states.
Steven Newmark 06:37
Great. So we covered vaccines, we cover treatment, and we cover the tests. So those are the basics of COVID specific stuff. Now what about telehealth? Something we saw a big increase of during the pandemic.
Zoe Rothblatt 06:47
Definitely we saw a huge growth, widespread acceptance of telehealth. People in our community really loved it because we see doctors regularly when we have chronic disease. It was scary when we were in lockdown, and to say I’m gonna miss an appointment, it’s not safe to go in and low and behold, we had telehealth and it was just incredible source of technology for our community to maintain our health. So the reason we had that was because of the public health emergencies and policies that helped expanded it. So now we can assume that some of that is going to go away.
Steven Newmark 07:21
Yeah, for sure.
Zoe Rothblatt 07:22
But I would say the main things to look out for is that you know insurance companies did cover telehealth before, so a lot of those flexibilities will stay in effect.
Steven Newmark 07:33
Yeah.
Zoe Rothblatt 07:33
The main thing is that there was loosening restrictions around what technology you can use and providers treating patients across state lines. So those will probably no longer be waived. So technology systems that don’t comply with HIPAA, you’re probably not going to be able to use that anymore. And if your providers out of state from you, they might not be able to treat you via telehealth anymore.
Steven Newmark 07:55
Yeah.
Zoe Rothblatt 07:56
The requirement to be in the same, licensed in the same state will probably take effect again. But again, you should check with your provider because they could be licensed in your state.
Steven Newmark 08:06
Yeah, exactly. So we’ve spoken a lot about telehealth in the past on this show. And you know, it’s still being figured out to say the least in terms of reimbursement rates and what doctors charge when you have less overhead and when you’re seeing a patient perhaps for less time or as I said with less overhead not having to use an office and clean an office before and after an individual visits, scrub it down the way you would perhaps the costs are less. So perhaps the charges will decrease. And there’ll be some kind of a hybrid mix for providers, which will make it financially beneficial to all.
Zoe Rothblatt 08:37
So you know, another big topic we’ve been relying a lot on these weekly morbidity and mortality reports from the CDC. And a big discussion is how will CDC report on COVID data going forward? I think this is extremely important for our community, because we watch as cases rise, we adjust our safety precautions that we’re taking. And, you know like you said maybe encourage those around us to take tests more frequently. So how will we know about COVID cases going forward?
Steven Newmark 09:08
Yeah, well, the CDC did announce his plan for collecting and reporting COVID data going forward is going to focus less on case rates and more heavily on hospital and death data. And one of the biggest hospitalization data changes is that reporting of suspected cases won’t be required anymore. The CDC will still use its hospitalization surveillance network to collect clinical information to better understand the disease and any changes that occur with severity and symptoms.
Zoe Rothblatt 09:31
And I saw that they were talking about how case data has become less reliable because of the rise in home testing and reporting step downs in some jurisdictions. So leaning into the hospital data is actually more accurate.
Steven Newmark 09:45
Yeah, that’s great. We’re also going to be watching the variants which will tracking will continue but the CDC will adjust some of the metrics it uses to model variant proportions. State level estimates of varying proportions will go away but regional estimate will remain. So we’ll see we’ll see how this goes.
Zoe Rothblatt 10:02
And the CDC will also maintain traveler surveillance, testing wastewater on airplanes in an effort to spot new incoming threats.
Steven Newmark 10:11
Great. And starting in June, the CDC will update its vaccination data on a monthly basis. So that’s where we are.
Zoe Rothblatt 10:18
Ya, overall, it’s not as frequent data as we were getting. But it’s in line with saying that we’re out of this emergency phase and let’s start to monitor COVID, similarly to how we do other diseases, and we’ll look at the data that is relevant now. Because looking at, you know, the same way we reported in 2020, it isn’t the same COVID in 2023, we have to think about it a little differently, especially given the at home testing and new things that we have going on now.
Steven Newmark 10:48
Yeah, absolutely. Absolutely. So, you know, I think the bottom line, it’s fair to say that this is great news. We are moving out of the emergency phase, we can downgrade somewhat from where we had been, vis-a-vis this being classified as emergency and COVID still exists. Of course, other diseases still exist that are out there. But you know, you think back on the last three years, 2020 2021, 2022 or 2023, each year certainly was progressively better. 2020 was, you know, I don’t even want to think about it. 2021 we had vaccines. 2022, things start to get a little bit better, and 2023, we’re able to lift the veil of the emergency, it doesn’t mean if you don’t feel comfortable, if you depending on your comfort level, depending on your discussions with your doctors, that might mean still wearing a mask, or you know, a high quality mask out in public, of course, but things are moving in the right direction, for sure. Which is great news.
Zoe Rothblatt 11:39
I agree with a lot of what you said. And to me, it feels like our day to day life isn’t going to change all the sudden, May 11 when the emergency order ends.
Steven Newmark 11:48
Yeah.
Zoe Rothblatt 11:49
It’s more just now being extra mindful about insurance coverage and when you do get a vaccine, test, treatmen. I mean, us chronic illness people like we’re pros at checking insurance. I’m not too worried. But it will be a bit shocking to have to pay attention to this now. And if we do get a bill, I know people have gotten crazy bills for testing. But I hope that as we move forward and plans are put in place by the government that there is a widespread availability still because these measures are key to keeping COVID at bay.
Steven Newmark 12:21
Yeah, totally. I agree. And I think It’s good. I think it’ll be good collectively for our mental health as well. You can’t live years and years in a constant state of emergency. Zoe, I don’t know how much you remember, you’re so young. But in the mid 2000s, after 9/11, they instituted this color coded thing. And I think every day was like yellow, yellow was like, like we were always in a heightened state. It was always a heightened state. And that’s a horrible way for society to live. And then sometimes we would get these alerts to say we’re in orange today, like what we’re in orange, what the hell is going on. And it’s not a healthy way to live, it doesn’t mean that there’s not a threat, that bad things can happen and that happens every day, depending on where you live. You and I both live in the New York City area, there’s crime, but you know, you can’t let crime dictate your day to day life, and you take your precautions as needed. And similarly, with a virus that is out there, we’ll take our precautions as needed for those of us in the current legal community, and some folks need a higher level of precaution and that’s what we’ll do.
Zoe Rothblatt 13:17
And one final thought I was just thinking about how we’ve had a bunch of public health threats in my lifetime, Zika, Ebola, swine ’09. And I don’t really remember there being such discussion around the end of them, kind of one day I just realized we stopped talking about it. And maybe I was younger so I wasn’t reading news as much. But it feels like a lot of conversation and thought is going into ending these public health emergencies which brings me comfort.
Steven Newmark 13:44
Yeah, I was around for those and I was working in public health for Zika and for swine flu, H1N1, and the major difference, frankly, was that the case load went down to zero. It was almost as if we stopped that in what would be the equivalent of March of 2020, before the case loads got high. So to the extent we declared the emergency, it never got to an elevated point.
Zoe Rothblatt 14:08
Well, that brings us to the close of our show. What did you learn today?
Steven Newmark 14:12
You know, I learned actually, in the course of this discussion, I was a little cautious about the end of the emergency but just in talking to you it’s almost therapeutic. I feel pretty happy and that this is something to be celebrated. I learned to look on the bright side and be very happy about this.
Zoe Rothblatt 14:25
For sure, and I learned a bit more about what insurance coverage is going to look like going forward for private health plans, Medicaid, and Medicare.
Steven Newmark 14:35
Excellent. Well, we hope that you learned something too. And before we go, we definitely want to encourage everyone to check out all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 14:44
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, please give us a rating and write a review on Apple podcasts and check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 14:58
I’m Steven Newmark. We’ll see you in next time.
Narrator 15:04
Be inspired supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S6, Ep5- A Multifaceted Discussion on Policy and Health: Debt-Ceiling Debate, PBM Transparency, RSV Vaccines, and Osteoporosis
Today our hosts talk about the latest news on the debt ceiling, pharmacy benefit manager (PBM) reform, RSV vaccines, and 50-State Network advocacy activities in D.C. Our hosts are also joined by GHLF colleagues Adam Kegley, Manager of Global Partnerships, and Angel Tapia, Senior Manager of Hispanic Community Outreach, who discuss their work in osteoporosis advocacy, awareness, and education.
“Over 200 million people around the world live with it [osteoporosis]. It’s a pretty staggering number already, but the thing is that so many people go undiagnosed, because they think a fracture is just a fracture,” says Adam.
S6, Ep05- A Multifaceted Discussion on Policy and Health: Debt-Ceiling Debate, PBM Transparency, RSV Vaccines, and Osteoporosis
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven 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 Stephen Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:18
And I’m Zoe Rothbart, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:23
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 00:29
Today, we’re going to talk about the latest news on the debt ceiling, PBM reform, RSV vaccines and advocacy activities in DC. Steven, I’m excited to hear from you. And we also will hear from two others later in the episode, Adam Kegley, and Angel Tapia on osteoporosis awareness and advocacy. So let’s dive into our news.
Steven Newmark 00:50
Yeah, it’s the beginning of May and unfortunately, this could be the last month that the United States is able to pay our bills, because Treasury Secretary Janet Yellen says that we’re going to run out of money unless our debt ceiling is increased by June 1st. So, welcome to May everyone.
Zoe Rothblatt 01:06
More happy news that we just pile on every episode, right?
Steven Newmark 01:10
Yeah.
Zoe Rothblatt 01:10
Okay. So what does this mean? What is happening? What might happen to stop this?
Steven Newmark 01:16
Well, I’m not gonna take the deepest dive into what a debt ceiling standoff is all about. I’ll just say, essentially, you accrue bills, and you have to pay them, right? You at home, you, you take your credit card, you go out and you pay for things, you have a mortgage, perhaps, or what have you. You don’t then decide whether or not you actually want to pay the bills. In the United States, a government, we have a law that says, “In order to pay the bills in order to increase your debt, even after agreeing to pay these bills, you then have to vote to increase the debt limit afterwards.” So It’s like saying, “Hey, we just ran up the credit card tab. This is from a few years ago, actually. And now those bills are coming due. It’s time to pay the bills.” Now, if you don’t pay your bills, what happens to you as an individual? You get a bad credit rating. You get – now, if, as a government, you decide not to pay your bills, or sometimes even if you threaten to not pay your bills, you can affect your credit rating, which is not a position anyone wants to be in. Folks holding treasury bonds, which are considered to be amongst – if not the safest investment you could possibly hold – they will shake up the markets, to say the least. So it’s not something anyone wants to see happen. But what’s going on right now is that attention is in the Senate as the standoff over raising the debt ceiling continues. So Republicans are using the opportunity of the debt ceiling, it being hit, they’re raising the debt ceiling to put pressure on both the Senate and the White House to try and get through some policies that they favor. So they put forth a bill, the House, put forth a bill. It squeaked by with 217 votes. I think that was one more one, now. They got it by one vote to increase the debt ceiling that – but it also includes a laundry list of deep cuts, shall we say, which are – which have essentially been declared dead on arrival by the Senate Majority Leader, Democratic Majority Leader, Chuck Schumer. And it’s also, you know, even if it somehow miraculously passes the Senate, it’s shortly going to be vetoed by President Biden. However, it’s the opening salvo in negotiations. So it’s probably what we should talk about. And we should talk a little bit about what’s in there in terms of health care policies, because, you know, that’s what we do on the show is we discuss what’s going on. So the Republicans are using the debt ceiling standoff to advocate for one of their long standing goals, which is requiring more low income Americans to work in order to receive government benefits, primarily food stamps and Medicaid. So Republicans tend to see work requirements as almost a twofer. It allows them to reduce government spending, while also bolstering the nation’s labor force at a time when some businesses are stuck struggling to find staff. Still, you know, some Republicans also argue that work requirements can lift people out of poverty, and then their reliance on the government. Critics, of course, see the mandates as an attempt to shrink what many consider the vital safety net programs without regard for the people who will be left struggling to put food on the table as a result of losing their food benefits and Medicaid insurance. So let me just take a pause and say what is actually in the plan that passed the House of Representatives. So what’s in the plan is that if childless, able-bodied adults ages 18 to 55 could get food stamps for only three months out of every three years unless they are employed for at least 20 hours a week or meet some other criteria. Currently, the mandate applies to those ages 18 to 49. That was suspended during the COVID public emergency, which expires next month. Medicaid, the Medicaid work requirements – it should be noted – Medicaid has never had a work requirement, but the Trump administration did grant waivers to several states to impose a mandate on certain enrollees, but that those never went through in full force because of litigation. Now, the Congressional Budget Office estimates that about 1.5 million adults, on average, would lose funding for Medicaid if this were to go through. So – but, the analysis also does say that it’s very possible that states might pick up the tab for some of these folks, or actually more than half of them. So it’s ironically a way of – in trying to save money for the federal government – shifting some money back to the state governments. Also, it should be noted for working age Medicaid beneficiaries without disability, 61% were working in 2021, according to the Kaiser Family Foundation, but of course, they held such low wage jobs that they still qualified for Medicaid. You know, there was one small sample set in Arkansas that, that did mandate work requirements for a little while before it was stopped by the court. And the result there in that small sample size, did – it showed that there was not an increase in [……]. So I’ll pause there and just say that’s, that’s where we are, the debt ceiling debate. The opening salvo includes Medicaid work requirements, which could have an impact on 1.5 million adults.
Steven Newmark 01:45
So thank you, for all that. That was a lot of rich information there, especially in the context of healthcare. I want to ask what happens next? What should we be on the lookout for?
Steven Newmark 06:00
Well, like I said, so now it moves to the Senate. So we’re speaking in the first week of May. The house is in recess this week, and the Senate is conducting hearings specifically on this bill where essentially the Democrats in the Senate are – that control the committees – are basically holding hearings to dismantle the bill, politically, if you will, but we’ll see where that goes. You know, as for the long term plan, that’s tough to say. The White House says they won’t negotiate over the debt ceiling, which I would argue that’s saying you’re not negotiating is actually a way of negotiating in some respects, right? You say, “I’m not going to negotiate over that?” “Well, what if I give you this, what if I give you this.” ” I’m not gonna negotiate.” You know? It’s like going to the car dealer and walking away, like, that’s part of the negotiating strategy, in some respects. So what that ultimately means, who knows? There’s all kinds of tricks that the Treasury Department can make in terms of this June 1st deadline, maybe make it a little bit later. Sometimes they could pass extenders, extend the debt ceiling for a month, two months, tied into the budget negotiations, which is a whole other rabbit hole I don’t want to go down for our listeners. But ultimately, it will affect the entire economy. Because if we do hit the debt ceiling – in 2011 we came close to hitting the debt ceiling, and our credit rating was affected. The United States’s credit rating, I’m referring to. So if that were to happen again, yeah, it could be – I don’t want to be alarmist and use the word catastrophic. That’s an overused term, but it could have an impact on the economy and ripple through and affect essentially everyone, and in terms of healthcare, you could start seeing, legitimately, cuts that have to take place, if the government is forced to pay their bills, and they don’t have – we don’t have the money, you could start to see true draconian cuts across the board, including in the healthcare space, including places like NIH, including places like FDA, HHS, and so forth.
Zoe Rothblatt 07:45
Yeah, that’s definitely, you know, like, scary as someone – just a regular person, but someone with chronic illness that relies on all of the research being done in these authorities to help guide us and we know the COVID public health emergency’s expiring soon. So now feels like a time to bolster all of these authorities, and it’s a little scary to hear that the opposite could happen.
Steven Newmark 08:07
Yeah, I know. I wish I had better news. I wish there were more exciting things to talk about. Well actually I do a better news; I do have better news. I’ve spent some time in Washington the last few weeks and on a very positive front, the issue of PBM reform is really gaining traction. Senators Bernie Sanders, an independent but of course caucuses with the Democrats, and Bill Cassidy, a Republican, have reached a deal on new legislation that aims to increase transparency measures on PBMs, Pharmacy Benefit Managers, as we all know, listeners know, are essentially the middlemen who help raise the price. So these senators, the two of them, lead the powerful Senate committee called the Health Education, Labor and Pensions Committee or the HELP committee. And so they are working on a legislative package to essentially reform the PBM process. They actually held hearings on Tuesday of this week, Tuesday, May 2nd, and ,in what’s called – known as a markup. So we’ll see where that goes. We – and I say ‘we’ – I mean GHLF, and our advocates have been in Washington, and have been pushing to make sure, you know, ensure that a PBM reform is included in the final piece of legislation, which is really a years long effort on our part just to get PBM – the idea of PBMs – even recognized by lawmakers. So it’s fascinating, talking to a colleague, just a few years ago, we would go down to Washington and talk to legislators, and they didn’t know what a PBM was. So you were talking PBM 101 with them, and now we’re at the point where we’re very close to this actually being a part of a major piece of legislation that – bipartisan legislation – has a strong chance of passing. So now where we are in the advocacy phase is as things sort of get into the muck of the sausage making, we want to make sure that our – us – I’m losing the metaphor but our clump of meat gets, gets to stay in that sausage, if you will, before the final bill gets to the full Senate. So that’s where we are. The bill, I should mention, would increase transparency plans to use PBMs as well as impose transparency measures on PBMs themselves. It would also ban spread pricing and mandate that PBMs pass 100% of the rebates collected from rebates from drug makers to health plans. We advocate that the rebates savings should go to, should go to patients. But I think, due to accounting tricks in terms of legislation and getting it marked up and savings to the government, that’s why they it’s going to health plans. And just to define ‘spread pricing’ for those who don’t know: it refers to the margin between the amount charged to a health plan and the amount paid by a PBM to pharmacies or prescriptions. So that difference would be banned essentially.
Zoe Rothblatt 10:36
And there’s a lot of mystery around what PBMs do and the deals behind, so this bill would help uncover some of that and put the practices more into light and put patients in a stronger position.
Steven Newmark 10:47
Totally. So I think transparency is the key, and I should mention there’s growing momentum on the House side as well. So we hope to see something, so if this does get through the Senate, we’re hopeful on the House side as well. So fingers crossed, we’ll see where we are. More than fingers crossed, because we’re actually going to do work to keep fighting for that.
Zoe Rothblatt 11:05
Exactly. Like you said, it’s years of advocating, and we know policy change takes time, and it’s exciting to see that work pay off.
Steven Newmark 11:14
Absolutely. Absolutely. Yeah, like you said, it is the culmination of years of so many folks doing this, and it’s not just GHLF and our members, but we are members of coalitions that come together from different organizations and different backgrounds, different disease states. Just last week, we participated in a congressional briefing with the Coalition for Skin Diseases. We had the opportunity to meet directly with legislative officials in their offices, as well as a luncheon with dozens of attendees of lawmakers’ offices. It was a great opportunity to educate policymakers about what it’s like to live with a chronic skin condition and how pending legislation can make a difference in the lives of these patients.
Zoe Rothblatt 11:52
That’s great. It’s also, I mean, we’ll hear more from Adam and Angel later in the episode but it’s also – you know – a ton of Awareness months, and I think we have the ear of policymakers during this time. And it’s a great time to just get active and do what you’re doing, what our network is doing and help raise the voice of people living with chronic conditions
Steven Newmark 12:11
For sure. So off with Capitol Hill. Zoe, why don’t you tell us what’s going on with the FDA?
Zoe Rothblatt 12:17
Sure. So in exciting news, the FDA is considering an approval of an RSV vaccine for older adults. So an advisory committee to the FDA voted in favor of approving two different vaccines for older adults for protection against RSV. They were looking at Pfizer and GSK vaccines. So let me tell you a little bit about the data that was shown. We know RSV had a huge impact last flu, winter season. So it’s exciting to see this come out now, ahead of the next you know, winter season when stuff usually crops up. So the data they were looking at, the Pfizer data showed that the vaccine was about 67% effective at preventing people from getting two or more symptoms of RSV-associated lower respiratory tract illness and also 86% effective at preventing three or more symptoms. And then similarly the GSK data showed the vaccine was about 83% effective against RSV lower respiratory tract disease and 94% effective at preventing severe RSV. So this was great data to see. This doesn’t mean the vaccines are approved, though the FDA usually follows guidance from the advisory panel, and their decision is expected this month, during May.
Steven Newmark 13:34
What a difference it would be to have a vaccine for the flu or RSV and for COVID next year.
Steven Newmark 13:43
Right. This one’s specifically for older adults, but I think we could expect that next would come immunocompromised [people] or young children, thinking about the groups that RSV poses the greatest risk to. It’s like we’re getting the foot in the door kind of like with policy, you know? You do one change, and then you add on. So hopefully this means that more news is coming.
Steven Newmark 14:06
Yeah, that’s great. That’s great. Thanks for keeping us informed about that, these important updates. That’s fantastic.
Zoe Rothblatt 14:11
Well, like I mentioned, today I’m joined by Adam Kegley and Angel Tapia to talk about their work in osteoporosis both with awareness, advocacy, and helping patients here and globally. So hi, guys, welcome to the Health Advocates!
Adam Kegley 14:25
Hello!
Angel Tapia 14:26
Hi!
Adam Kegley 14:26
Thanks for having us!
Zoe Rothblatt 14:27
I’m so happy to have you guys here. Why don’t you start off by introducing yourselves and telling our listeners a little bit about you. Angel, I think you’ve been here before, so welcome back!
Angel Tapia 14:37
Thank you! Yes, this is my second appearance on the Health Advocates. So super excited to be back. I’ll reintroduce myself. I’m the Senior Manager of Hispanic Outreach. And I also am the host of Wellness Evolution podcast with Global Healthy Living Foundation. So I’m happy to be back and to be here to really share the great work that we’ve been developing to help raise awareness and support engagement for osteoporosis, fracture prevention and healthy aging.
Adam Kegley 15:02
And I am Adam Kegley. I’m the Manager of Global Partnerships at the Global Healthy Living Foundation. My work is all about -well, you may have guessed it – building partnerships with people, organizations, institutions around the world so that we can really continue to better the lives of people living with chronic conditions. I’m super proud of the work we’ve been doing, and especially about leading our Strong Bones & Me global osteoporosis initiative alongside Angel, which I think we might be here to talk about today.
Zoe Rothblatt 15:31
Definitely. So let’s take it back a few steps. Can you guys both – or one of you – briefly explain osteoporosis, and then I’d love to hear from both of you about, you know, what drew you both to advocate for this condition and help patients.
Adam Kegley 15:45
Sure. So osteoporosis is quote unquote, a “bone thinning” disease. It essentially occurs when your body no longer creates new bone as quickly as it removes old bone, which means that your bones kind of become weak and brittle and are pretty abnormally porous and compressible, kind of like a sponge, actually. And at that point, a fall, or even mild stress, like coughing, sometimes – in the worst cases – can actually cause a bone to break. And, you know, most common osteoporotic fractures include the hip and the wrist, but also the spine, which is something that I think a lot of people forget about, or maybe don’t know about. It’s also known as the “silent thief” as a condition because it kind of silently steals your bone density, often kind of – without knowledge – until someone really experiences a fracture or receives a diagnosis, which unfortunately, means it’s pretty successful thief.
Angel Tapia 16:39
And I’ll say, for me, just being a part of the project was, first off, like, we all have bones. So it was very interesting to be part of a project that even though it’s a diagnosis that I don’t have, it’s something that I could learn from, and because it is something that is preventable, and [related to] the importance of healthy aging. So when Adam brought me into the project, I was just very interested in the education, you know? I had a general understanding of osteoporosis. But when you start looking at the research, and you learn the statistics, like one in three women worldwide, over the age of 50, will experience a broken bone due to osteoporosis, and one in five men will – worldwide – will have that experience as well over the age of 50, to experience the broken bone due to osteoporosis. That, like, brings it home, because it is something that can affect all of us at some point. Also, learning about the different communities that are at higher risk was very interesting. And finding out the differences between first fracture and second fracture and those that are not aware of the resources that are available, or maybe don’t know how to talk to their doctor about their bone health. It just really spoke to my empathy, that we can create something that can be helpful for them to engage in better health, to be able to have more education around how to ask questions to their physicians, and then also how to better take care of themselves.
Adam Kegley 17:57
That’s exactly right. And I could only second everything that Angel said so beautifully. I thought, also, it was kind of touching on what she said, it’s so pervasive and kind of rather insidious, in its nature globally. And when I kind of realized one of the statistics as well, that’s over 200 million people around the world live with it, it’s a pretty staggering number already, but the thing is that so many people go undiagnosed, because they think a fracture is just a fracture. Sometimes doctors or hospitals, when they come in, they just send them right back on their way without any follow up or without receiving a bone density scan, which is also known as a DEXA scan, which is kind of a crucial testing element to be able to determine whether your bone density is thinning over time. It’s a key way to determine whether somebody is either at risk for osteoporosis or has osteoporosis already. So these things were really interesting, I think, to both of us and really hit home that we could hopefully help make a difference in people’s lives, you know, who’ve been affected by it.
Angel Tapia 18:59
And even the creativity with figuring out, you know, what some of the barriers are to access and again to the education that’s so important. And us being able to have partners where we can really bridge the gap for a lot of these communities, I think is a part that we’ve really enjoyed about this project.
Zoe Rothblatt 19:17
Thank you so much for all the work you both are doing. You may know this, I’m not sure, but about a year ago, I found out about a family history with osteoporosis and we knew nothing about it. A lot of what you’re talking about just undiagnosed. And it was just, you know, preventative run of the mill scan and it was like, “Okay, this is what’s going on.” And in turn, now, I’m taking preventative steps because of my risk, which includes bone strengthening exercises and daily calcium, and it just – I feel so fortunate that at a young age, I found out about this and I’m able to take the right steps. But I really didn’t know anything about it until it showed up and as so many in our community know it’s like really intimidating when there’s a diagnosis in the family, and it can feel overwhelming. And I just think the work you’re doing to help give people the education and tools upfront is so important, especially because you said one in three women, so many people worldwide, are dealing with this and not enough is being talked about.
Angel Tapia 20:16
And it’s another condition where we have to think about stigma as well, because when we think about our bones, we’re thinking about when we get older, when we get to a certain age. And when you start learning that, as you said, there’s those preventative measures that we can start taking now, there’s history that we could find out from our family members that, you know, makes this even more important. So advocating for those loved ones to get tested, when they get to the age that they should have these testings and then sharing that information, you know, within the family so that those that aren’t of age yet but need to really start paying attention to family history, and really having that focus on how to maintain healthy bones, I missed an important conversation,
Adam Kegley 20:55
I was just going to build on what both of you said, actually, I think it’s a really important point. And what you mentioned, Zoe, is that, you know, outside of family history as well and I think a lot of people don’t realize that if you’re over 50, and you’ve broken a bone, you need to get a DEXA scan. And there are other situations as well, that the average risk person, it’s 65 or older for women and 70 or older for men, but somebody maybe who’s living with a chronic condition that’s been linked to osteoporosis or bone loss or on medications that have been linked to bone loss- those people, no matter the age, they should also be getting a DEXA scan because they’re at a heightened risk for bone density loss.
Zoe Rothblatt 21:35
And just so it’s clear to people talking about that with their primary care, or is there a specialist that that they would go to for this
Adam Kegley 21:42
That’s a great question. The first step I think would be to talk to your primary care provider. There are specialists as well. If you’re involved with an endocrinologist, or perhaps an orthopedic surgeon, or seeing somebody for bone related issues, of course, you can talk to them as well. But your first step would also be your primary care provider.
Zoe Rothblatt 22:02
So tell us about the Strong Bones & Me program. I’m so excited you guys teased it a little bit. Tell us what’s going on there.
Adam Kegley 22:09
Yeah, the Strong Bones & Me program is basically GHLF’s new global osteoporosis initiative. Our focus is really to educate and inform and engage people living with or affected by osteoporosis, as well as providers and others around the world on the risks of the condition, including multiple fractures and prevention of them how people might ask for support and treatment, or especially follow up care if they’ve experienced a fracture from their providers, as well as additional support from caregivers, family and friends.
Angel Tapia 22:42
I was going to add another great part about it is also the partnerships that we’re creating with this project. Since it is a global initiative, we’re working with many organizations worldwide, that are bone health experts. And that’s a way for us to collaborate with those that are leaders really in bone health and to work with the groups that are represented through our Global Council. So we’ve dubbed it a little bit of “friend raising”. And the key there is because we’re cultivating the partnerships and the support. It’s really supporting each other. We don’t see ourselves as the bone health experts, we know that those are already out there, and we’re partnering with them as part of our Global Council. So really, it is just our goal to help connect the education to the populations that are most at-risk, to make sure that we’re amplifying the education that these organizations are already creating, and that we enhance that with the research that we have also found with the content that we’re able to create, and that we’re able to do this in various languages as well, working in countries that may have limited resources to really amplify this gives us an opportunity to use this material in several languages to reach across the world.
Zoe Rothblatt 23:54
That’s great. making things accessible in so many languages is such a huge part of advocacy and giving people the tools to be able to you know, speak up and advocate for themselves. And I’m curious, you know, what’s it like working with these different groups? Tell us about the global perspectives and your experience there.
Angel Tapia 24:11
So aside from the varied time zones that we all have to get very comfortable with quickly, there is a lot of great learnings. I think the experiences have shown us some of the similarities and differences between the communities that we have in the US and the communities that we have worldwide. I specifically work with the Hispanic community and what I’ve seen with some of the partners that we are now engaging is that the similarities for caring for our aging population is something that’s very important, making sure that we are advocating for our loved ones looking out for the barriers that they may have to health care and also providing financial and emotional support to our elders is something that’s very important in a lot of the countries that we’re working in. So our idea to make sure that caregivers find support, that physicians are hearing patients’ stories so that they’re aware of how their community is being affected once they leave their office, and also just an opportunity for voices to be heard around the world, people sharing their stories that may have different circumstances. So it really brings about that even though there are different languages, we are all sharing this human experience that we are all aging, or we have family members that are aging, so we can learn this education for ourselves, and we can share it with others and realize that better health is always a value, no matter where you are in the world.
Zoe Rothblatt 25:32
That’s great. How can people get involved what’s coming next?
Angel Tapia 25:36
we are going to be launching the Strong Bones & Me website very soon. So we’re going to be sharing great content there that has been created to really highlight the osteoporosis and fracture prevention education. We also will be having a social media promotion happening for Osteoporosis Awareness Month, which is May, and that will be on GHLF, as well as CreakyJoints, social media channels and website. So there’ll be more information to come with that. And I’m sure that we could share more content or a few links for some of our resources on the page for this interview.
Adam Kegley 26:09
That’s right! And we’re also having an osteoporosis and bone health-themed live CreakyChats, one of our great CreakyChats on Twitter on the 15th of May, that’s Monday at 7pm Eastern Time. And we would love for any and all of you to join the chat. We’ll have several co-host organizations from our Global Council and a special guest doctor who is an endocrinologist.
Zoe Rothblatt 26:33
Very cool! So we’ll see everyone on Twitter. You could either do #CreakyChats or follow @CreakyJoints to get the information. Very cool. I’m so excited that there’s ways for our community get involved in the great work you both are doing. Thank you so much for joining us today.
Angel Tapia 26:49
Thank you, Zoe!
Adam Kegley 26:50
Thank you, Zoe!
Steven Newmark 26:53
Wow, that was fantastic, Zoe. It was great hearing from Adam and Angel and hearing what they had to say about osteoporosis.
Zoe Rothblatt 26:59
Well, that brings us to the close of our show. Would you learn today?
Zoe Rothblatt 27:02
Well, I learned from you about the great work that is being done in RSV vaccines for older adults, and how there’s some hope that there may be a vaccine as we go into the winter and knock wood hopefully also for you know, beyond just the older adults.
Zoe Rothblatt 27:17
Definitely, and I learned from you a lot about the debt ceiling. There’s so much to recap there and thank you for breaking it down simply for us.
Steven Newmark 27:25
Well, we hope that you learned something, too. And before we go, we definitely want to encourage everyone to check out all of our podcasts at GHLF.org/listen.
Zoe Rothblatt 27:30
Well everyone, thanks for listening to the Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, please give us a rating and write a review on Apple Podcasts. And definitely check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 27:52
I’m Steven Newmark. We’ll see you next time!
Narrator 27:57
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S6, Ep4- The Future of COVID Booster Shots
In this episode, our hosts discuss the learnings from the recent Advisory Committee on Immunization Practices (ACIP) meeting and what it means for COVID vaccine scheduling going forward. They also break down the latest on new COVID boosters, mifepristone, and results from the latest quick poll on stress and chronic illness.
“I feel like we’re not getting news specific to our community, so it feels really important for us to be breaking it down and talking about it. Because… a lot of science is talked about, and it’s hard to read the data sometimes, so just having time together to break it down is helpful,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
S6, Ep04- The Future of COVID Booster Shots
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
Today we’re going to talk about the recent ACIP committee meeting who advises the CDC on vaccines. We’ll talk about the second bivalent booster available, a mifepristone update, and of course some quick poll results on stress and chronic illness.
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 00:35
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:40
Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:46
And today’s Steven, we’re going to talk about the future of COVID vaccine scheduling, what was discussed at the recent committee meeting. But first, as always, let’s hop into the news updates.
Steven Newmark 00:57
Well, speaking about vaccines, the second Omicron boosters are here. The FDA recently authorized an additional round of bivalent boosters for those 65 and older and those with weakened immune system.
Zoe Rothblatt 01:08
So the shots are given in two different time increments. So if you’re 65, plus, it’s four months after your first bivalent booster. And if you’re immunocompromised like many in our community, it will be two months after your first bivalent shot.
Steven Newmark 01:22
These updates are a little different because they say these groups can choose to get these vaccines, they are not a requirement.
Zoe Rothblatt 01:28
Yeah, I thought that was interesting as well. I guess our community has been asking a lot of questions about when the next vaccine is going to be. So it’s good to see that these updates are happening. And I know we’ll get a little bit more into this as we go into the committee meeting. But It’s interesting that it’s not a requirement or recommendation, but rather just a choice.
Steven Newmark 01:49
Also interesting is the FDA is withdrawing authorization for the older vaccines targeting the original strain. And so essentially, anyone who is unvaccinated still can get a single dose of the by bivalent booster, so they don’t have to go through the whole primary series to get the updated booster.
Zoe Rothblatt 02:04
Pretty cool and makes sense because we’re seeing that those are the variants that are circulating, and we’re not really seeing any of the original cases, so I’m glad to see this update.
Steven Newmark 02:14
Yeah, definitely. We also have a mifepristone update from the Supreme Court. The Supreme Court preserved access to the medication ordering that the drug should remain broadly available as the litigation plays out in a lower court.
Zoe Rothblatt 02:25
Yes. So basically, this didn’t end the legal battles over the drug that we’ve been talking about but it just assures that mifepristone will remain available until the justice has decided otherwise.
Steven Newmark 02:36
Yeah, the next steps are the case is going to be heard in the United States Fifth Circuit Court of Appeals on May 17. Although the Supreme Court order is likely to stay in place, even after the Fifth Circuit rules so that any decision would be appealed back to the Supreme Court for a final ruling.
Zoe Rothblatt 02:51
Which might not happen for a while, so I guess we’ll keep updating on this as we learn more.
Steven Newmark 02:56
Stay tuned.
Zoe Rothblatt 02:57
And then our third bit of news here, we have a quick poll update. So we asked our community about stress, specifically stress related to their chronic illness and 75% of the people that answered the poll said that in the past seven days they’ve been moderately or very stressed due to their chronic illness.
Steven Newmark 03:15
I’ve been there. What did they do to manage their stress?
Zoe Rothblatt 03:18
That’s a good question. We also asked about that. So people could select all that apply. 61% said they watch TV or movies. Definitely agree with that. And then nearly half had selected each of these options: they listen to music, read a book, go for a walk or a hike or talk to family and friends.
Steven Newmark 03:36
Those are probably healthier than watching a movie or TV but whatever works, right?
Zoe Rothblatt 03:41
I know. Yeah, I guess It’s like a mix.
Steven Newmark 03:43
You gotta mix. Right? You gotta mix it up, for sure. You’re right, you’re right.
Zoe Rothblatt 03:46
Alright, so let’s hop into our big topic of today. So there was another meeting of the Advisory Committee on Immunization Practices, ACIP for short. This is a committee that advises the CDC and let’s talk about what they discussed. There was a lot of updates on the COVID vaccine specifically. I think we’ll get into some data on the effectiveness, what hospitalizations are looking like, and then ultimately, where does vaccination policy go from here?
Steven Newmark 04:14
First, there was lots of discussion around the vaccine effectiveness and waning immunity and talking about pediatrics. The committee advised that children should stay up to date with COVID vaccines No surprise there. The data showed that monovalent primary series vaccination helped provide protections for children ages three to five against symptomatic COVID infections for at least the first three months after vaccination. It started to wane after roughly the 46 months after the second dose.
Zoe Rothblatt 04:42
And this is similar to the patterns that we’ve seen in adults right, you know, there’s no surprises here.
Steven Newmark 04:48
Exactly. So for most people who got the monovalent shot and are eligible for a bivalent booster it’s been more than a year since their monovalent dose and because of waning immunity, they may have limited protection and it may be time to get that booster.
Zoe Rothblatt 05:01
So yeah, when thinking about what I gathered from this discussion was that in all age groups, there is waning immunity at the four to six month mark, and many people haven’t been vaccinated in over a year. So there’s a lot of people out there that have limited protection.
Steven Newmark 05:17
Absolutely. They also looked at hospitalizations…
Zoe Rothblatt 05:19
And yeah, so the 65 plus age group had the highest rates of COVID associated hospitalization. This isn’t surprising.
Steven Newmark 05:26
No, not at all.
Zoe Rothblatt 05:27
It also makes sense with you know, the new recommendations that 65 plus can get the second bivalent booster. The data did show that they looked at the first bivalent booster and you know, how protective was it for hospitalizations? It showed that it did in fact provide additional protection against emergency department and urgent care encounters and hospitalizations. And most importantly, it showed that the vaccines provide protection against most critical illness, which is you know, being on a ventilator or dying.
Steven Newmark 05:55
Yeah, and then there was also some updates to a COVID vaccine policy. The ultimate goal as for the CDC is to take steps towards simple recommendations to increase the vaccine uptake and they came up with three ways to simplify. The first is a single formulation for mRNA vaccines, the second is to do a single, possibly an annual dose for most individuals to make things easier similar to the flu vaccine. And the third is to allow for flexibility for vulnerable populations including the immunocompromised.
Zoe Rothblatt 06:23
So let’s break down each of these. We’ll start with number one, the single formulation for mRNA COVID vaccines. So basically the committee is supporting the FDA and that transition from the monovalent primary series to the bivalent shot or the mRNA vaccines. That’s a little important distinction, there’s no change for Novavax, or Johnson & Johnson just yet. This is specifically about the mRNA vaccines.
Steven Newmark 06:48
Right. You know, the situation is that many of the monovalent COVID vaccine products have already expired, others are going to expire soon. So the FDA removed authorizations for the monovalent mRNA COVID vaccine products.
Zoe Rothblatt 07:01
And I guess what’s the data to support this? They looked at that in the meeting. And there was a lot of science going on there. And we could just break it down in simple terms as advocates.
Steven Newmark 07:11
That’s what we do here.
Zoe Rothblatt 07:12
So they showed that the bivalent COVID vaccines induce an immune response when given either as a primary series or a booster and when the bivalent shot was given as a primary series induced an antibody response that was 25 times higher than the original monovalent vaccine, which was really good to know that we’re replacing the monovalent shot with the bivalent, and it is in fact producing a higher antibody response.
Steven Newmark 07:40
Yeah, no, that’s great. I mean, there’s limited data to directly compare COVID outcomes after getting the monovalent or the bivalent vaccines, but most studies show that bivalent vaccines expanded the immune response.
Zoe Rothblatt 07:50
So overall, number one, that makes sense, simplify it, get the bivalent shot instead of the monovalent.
Zoe Rothblatt 07:57
Yeah.
Zoe Rothblatt 07:58
Now, what was number two again? That was about a single annual shot, right?
Steven Newmark 08:02
Correct. So when thinking about how frequently people should get a COVID vaccine, data showed that there is an increase in cases in the winter months, and also when there’s an emergence of new variants, of course.
Zoe Rothblatt 08:12
And in the summary, the committee said that they plan for a fall booster that could provide added protections at a time when one you know, the cold weather’s coming, like you just said, or two many would be one year from their last dose and it would help with that waning immunity, right?
Steven Newmark 08:28
I think it would almost sound somewhat similar to this year where many people got the flu and COVID vaccines in tandem, some literally on the same day, some within a few weeks of each other and that looks like we’re going into the future.
Zoe Rothblatt 08:41
That’s what I did. I got them, like within a few days of each other, and it felt good. Just to get that done both together, on a schedule, now I have protections, especially with… I have to hold one of my meds. So it gets a little annoying. And it’s nice to do it together, and just everything at once out of the way.
Steven Newmark 08:59
Definitely, definitely. Hopefully it will be as seamless in the sense that the public emergency is ending. And it will be as simple as going to a pharmacy to get the shots, as many of us did last year, as many of us have done for many, many years with the flu vaccine. So we’ll see. We’ll see what it looks like in the fall. But I’m hopeful that it’ll be pretty, pretty straightforward.
Zoe Rothblatt 09:20
So that was briefly mentioned in the meeting about COVID vaccine cost after the emergency order ends in May. And the committee said that all vaccines purchased by the US government will still be available for free. But there was you know, a few notes on the commercialization of vaccines and having private entities buying vaccines. So we’ll have to see how it all plays out with what it costs. But for now, it’s looking like it’s still covered.
Steven Newmark 09:45
I didn’t quite grasp… they mentioned… I know what you’re referring to in the hearing. Did you happen to grasp or get a sense of whether the U.S. government was going to be purchasing the same quantities that they had been in the past or having a more limited supply and targeted only to those with financial needs, or if it was more likely to be a free for all into the far future. I couldn’t tell.
Zoe Rothblatt 10:06
I couldn’t tell either. From what I saw, it felt vague, kind of like: Oh, this is on our minds, and maybe we’ll discuss it at the next meeting.
Steven Newmark 10:14
All right, well, that’s good. But our preference here as advocates would be for vaccines to be as widely available as possible. We want individuals who are immunocompromised to, of course, get the vaccines and be protected. But we also want the general population to get vaccinated as much as possible to help stop the spread of whatever’s coming our way next fall next winter. So the more accessible these medications, if they’re free, that makes it easier if they’re available at local pharmacies, that makes it easier and more seamless. You know, whatever increases accessibility for the entire population is something that we will continue to advocate for.
Zoe Rothblatt 10:49
Definitely. And one last note on this single annual dose. The data showed that children will likely still need a primary series and a booster to optimize immunity. Like we talked about that data before that immunity was waning in children under five. It’s depending on age, there’s a little bit of difference in how things will go. So always talk to your doctor, I guess is the ultimate rule of thumb. Check in with your doctor about what the timing, when you should get it, which you should get, and all the good stuff there.
Steven Newmark 11:20
Yeah. oh, and then the third piece was the flexibility for vulnerable populations.
Zoe Rothblatt 11:24
Yeah, this goes in line with what we talked about the top of the episode. So this third part with the FDA authorizing a second bivalent booster for 65 plus and immunocompromised, the committee, you know, looked at that decision and were talking about it and ultimately said that right now, there isn’t enough data to support a routine recommendation for both of these groups and just acknowledging that they have to be flexible with vaccine recommendations. So what this ultimately means is, we don’t really know the next step right now for or how often 65 plus and immunocompromised will need a COVID vaccine, but they will continue to look at the data and give recommendations on what feels right and what the data is showing.
Steven Newmark 12:04
Excellent. Well, thank you, Zoe, for covering that for for GHLF. And learning all that you learned from feeding.
Zoe Rothblatt 12:10
Yeah, same to you. It’s good to talk about this. I haven’t seen any big news. I saw news on the boosters. But the rest of these recommendations, it’s like, I feel like we’re not getting news specific to our community. So it feels really important for us to be breaking it down and talking about it. Because again, like a lot of science is talked about, and it’s hard to read the data sometimes. So just having time together to break it down is helpful.
Steven Newmark 12:35
Definitely, definitely. Well, we’ll continue to do that.
Zoe Rothblatt 12:39
Alright, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 12:43
You know, I learned a lot about what happened, at the ACIP meeting from you and your great reporting, if you will, on the ground. And I think generally, my takeaway is that we’re in a good spot, and I feel comfortable about where we’re going in terms of the vaccines moving forward into the future as the public health emergency ends.
Zoe Rothblatt 13:00
Me too. I would agree with that. My takeaway was just that we have a lot of good data now. And it seems like we’re getting stronger in recommendations for how to move forward than just kind of letting you know COVID lead the way. It feels like we’re really leading now.
Steven Newmark 13:14
For sure. But we hope that you’ll learn something too, and before we go, we definitely want to encourage everyone to check out all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 13:26
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, please give us a rating and write a review on Apple Podcasta. And don’t forget to check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 13:40
I’m Steven Newmark. We’ll see you next time.
Narrator 13:46
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S6, Ep3- Breaking Down the Latest Health Headlines with Corey Greenblatt
In this episode, The Health Advocates are joined by guest co-host Corey Greenblatt, Associate Director of Policy and Advocacy at GHLF. Zoe and Corey dive into the latest news on mifepristone and the court ruling, promising research on a new mRNA cancer vaccine, and plans to expand health insurance coverage to DACA (Deferred Action for Childhood Arrivals) recipients.
“Nearly half of DACA recipients are uninsured, so when we talk about the importance of Medicaid expansion, or the importance of the Affordable Care Act expansion, or just generally affordable access to health care, this is something that is just exponentially more important for this group of people,” says Corey.
S6, Ep03- Breaking Down the Latest Health Headlines with Corey Greenblatt
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
Today on The Health Advocates, I’m joined by guest co host, Corey Greenblatt and we’ll cover the latest news on mifepristone and the court ruling, promising results on a new mRNA cancer vaccine, and plans to expand health insurance coverage to DACA recipients.
Zoe Rothblatt 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 Zoe Rothblatt, Associate Director of Community Outreach at the Global Healthy Living Foundation. Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. Today, I’m joined with a special guest, co host Corey Greenblatt.
Corey Greenblatt 00:50
That’s right. I’m Corey Greenblatt, Associate Director of Policy and Advocacy at GHLF. And I’m really excited to be joining you as co host today.
Zoe Rothblatt 00:56
Well, thanks for joining us, Corey. I’m excited to have you here. We have a bunch of news items, and I’m looking forward to hearing your thoughts and insights on these.
Zoe Rothblatt 01:05
But first, how are you? Do you have any advocacy updates for us?
Corey Greenblatt 01:09
I’m well, Zoe, I’m doing really well. And yeah, actually, there’s a lot going on in the advocacy world right now. Myself and our Director of Policy, Steven Newmark, your normal co host are going to be in D.C. this week to advocate for reforms for pharmacy benefit managers, as well as a copay accumulator adjuster ban and holding our second congressional briefing to highlight these issues. And then later next month, our colleague JP Summers and I are going to be taking stops at the state capitals in Wisconsin and Ohio along with some local patients there to support copay accumulator adjuster bands there. So that’s obviously a big issue for us, and we’re hoping to see some things done both statewide and federally. So if you are listening to this, and you have any friends in Ohio, and Wisconsin that are interested in getting involved, we’d love to work with them on this.
Zoe Rothblatt 01:57
Very cool and where can they go in order to work with you on that?
Corey Greenblatt 02:01
Well, the first thing to do would be to sign up at the 50-State Network, and then talk to some of our staff members who will give you a call after you sign up and tell them that this is what you’re interested in doing. Because we’d love to work with you.
Zoe Rothblatt 02:11
That’s great. It’s really cool to hear about all the work you and our network are doing both federally and state-side. We’ll definitely have to have you back on in a few weeks for a recap to hear how it goes, how legislators are thinking about these bills, and the overall impact that you’re seeing.
Corey Greenblatt 02:26
Love to come back.
Zoe Rothblatt 02:27
Okay, so let’s dive into our news. First off, we have an update on mifepristone. So last week, we talked about… Steven and I debriefed our listeners about what’s happening with this drug and how this ruling impacts patient access, FDA authority and ultimately, the biopharma industry. So maybe before we jump into the news update here, Corey, do you have any thoughts you wanted to share on this issue? And just you know, what it means that an FDA approved drug can be attacked like this? I’m curious for your thoughts.
Corey Greenblatt 02:57
You know, I have a lot of thoughts on this. Obviously, this is not something that should happen. The FDA has legal authority to say whether a drug is safe or not safe. And simply put, judges are not trained in scientific matters to be able to understand things in the way that the FDA should. So they shouldn’t be making decisions that overrule these decisions. I have a lot more thoughts, but I’ll keep it to that for now.
Zoe Rothblatt 03:21
Totally agreed. Yeah, especially for our chronic disease community. We know how important drugs are in the review process and the safety, the trust we have in the FDA. So hearing this news is definitely scary for us. So the news update here is on Friday, U.S. Supreme Court, Justice Alito temporarily blocked lower court rulings that impose tighter restrictions on mifepristone. So this block is in place until midnight on Wednesday of this week, that’s April 19th. And basically what it does is it just gives justices more time to review the case. And it gives the groups challenging the FDA time to submit a written argument. So it doesn’t necessarily signal which way the court is leaning and how they’ll rule, it just overall, you know, delays the process a bit to get more opinions out there and thinking.
Corey Greenblatt 04:09
Yeah, I think that this is something that it ultimately helps patients right now. I think that making any decision in a snap judgment would ultimately harm the country. So I think that this was the right decision, and we’ll see what happens during written arguments.
Zoe Rothblatt 04:24
Definitely. We’ll see what happens and we’ll keep our listeners updated. Our second news item; This is pretty cool. There’s progress on mRNA cancer vaccines. So I was reading that this Moderna-Merck mRNA vaccine shows promise against skin cancer. And the researchers presented these findings at an American Association for Cancer Research meeting, and it showed that in combination with Merck’s immunotherapy, it cut the risk of death or recurrence of the most deadly skin cancer by 44%.
Corey Greenblatt 04:55
You know, that’s really incredible. The findings also suggested that adding this personalized cancer vaccine to immunotherapy treatments could prolong the time that patients have without reoccurrence, or death. These vaccines are custom built based on an analysis of the patient’s tumors after surgical removal. And they’re designed to train the immune system to recognize and attack specific mutations in cancer cells. You know, this is amazing, it shows how innovation can take something like the COVID vaccine and turn it into a vaccine that impacts cancer across the country and across the world and could have effects for decades down the road.
Zoe Rothblatt 05:32
Exactly. I heard two elements from what you were saying, one, it’s amazing the technology that we got from the COVID vaccine. And so quickly, we’re seeing mRNA vaccines in use, but also too, you talked about how this vaccine is custom built, and you know, using precision medicine, in order to tailor the treatment to the patient is so cool. We see it a lot in the cancer space, we’re starting to see it in the arthritis chronic disease space. But just seeing this in the cancer space, I guess gives me hope. I know patients in our community have cancer, but most of them are living with auto inflammatory conditions, and it gives me hope that we might see something in our space soon.
Corey Greenblatt 06:09
For sure. And you know, while we aren’t scientists, we can, as you said, talk to the use of precision medicine. We’ve seen it with arthritis starting up. And this is just something that I hope to see more of as we’re going down the line.
Zoe Rothblatt 06:22
Me too, and talking about something we hope to see more of our third news item here is insurance expansion for DACA recipients. So the Biden administration announced a plan to expand access to Affordable Care Act and Medicaid coverage for DACA recipients.
Corey Greenblatt 06:37
Yeah, for just a little background. DACA was created in 2012 by the Obama administration, and allows roughly 600,000 immigrants who were brought to the U.S. illegally as children to live and work in the country, legally,
Zoe Rothblatt 06:51
And DACA recipients are already eligible to apply for some health services in the U.S., but it’s primarily around emergency Medicaid. So it’ll pay, you know, for emergency medical treatment for people who meet the state’s Medicaid eligibility requirements, but not the citizenship and immigration status requirements that DACA recipients don’t meet. And you know, I just think like, it’s just not fair to say you’ll only cover emergency services, especially when you live with chronic conditions. And we always talk about preventative care is so important, and how just detrimental it is to wait for someone to get in that emergency state and have to go seek care at this point so I think this is long overdue to allow access to these coverages.
Corey Greenblatt 07:38
Yeah, and I think something that’s really important to point out, especially as it relates to kind of the health care industry that we occupy, nearly half of DACA recipients are uninsured. So when we talk about the importance of Medicaid expansion, or the importance of the Affordable Care Act expansion, or just generally affordable access to health care, this is something that is just exponentially more important for this group of people.
Zoe Rothblatt 08:03
Totally agreed. I have to ask Corey, we know DACA is currently under threat, how likely do you think this is to go through?
Corey Greenblatt 08:10
You know, it’s hard to predict anything at the court level. But the White House has set a goal for finalizing the measure by the end of the month. And then the program is not currently open to new applicants because of legal challenges. So like always, we’ll keep an eye on the courts. We’ll continue to update people through our podcast. And we’ll hope for the best case scenario in this case.
Zoe Rothblatt 08:30
Especially this is coinciding as millions are about to be losing their Medicaid status because of the emergency health orders. So I think it’s really important that these measures are popping up to increase access to health care as one has reduced and other pops up to help our community.
Corey Greenblatt 08:48
Completely agree.
Zoe Rothblatt 08:50
Okay, Corey, that brings us to the close of our show. What did you learn today?
Corey Greenblatt 08:54
You know, I learned about the new technologies related to mRNA vaccines. I think that when the COVID vaccine was first created with this technology, we all heard that this was the potential gateway to some really exciting things. And to see that start to pay off is really incredible and makes me really excited for where it could go.
Zoe Rothblatt 09:14
Amen to that. And I learned from you about all the great work happening federally and state side in order to help our patients get access to the care that they need. And listeners, we hope you learned something, too. Before we go we definitely want to shout out all of our podcasts and you can check them out at ghlf.org/listen. 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, please give us a rating and write a review on Apple podcasts and definitely check us out on YouTube. I’m Zoe Rothblatt.
Corey Greenblatt 09:50
And I’m Corey Greenblatt. We’ll see you next time.
Narrator 09:55
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network
S6, Ep2- Revoking FDA Approval: The Implications for Drug Regulation and Patient Care
Our hosts share the latest news updates on COVID boosters, our patient support program quick poll results on exercise habits, and the recent decision by the Texas district federal court to ban the use of mifepristone, which threatens the authority of the U.S. Food and Drug Administration (FDA).
“This is the first time a judge has essentially overruled the FDA, and this ruling could open the door to lawsuits, to contest approvals or regulatory decisions related to other medications or vaccines,” says Steven Newmark, Director of Policy at GHLF.
S6, Ep02- Revoking FDA Approval: The Implications for Drug Regulation and Patient Care
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
Last week a federal judge in Texas issued a ruling to revoke the Food and Drug Administration’s 23-year-old approval of a medication. This poses threats to the US government’s regulatory that can go far beyond any one drug, and this appears to be the first time a court has moved toward the ordering of removal of an approved drug from the market over the objection of the FDA. The ruling could open the door to lawsuits to contest approvals, or regulatory decisions related to other medications and if upheld, the Texas decision would shake the very framework of our reliance on the FDA’s pathways for developing new drugs.
Steven Newmark 00:44
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
00:53
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:57
Our goal is to help you understand what’s happening in the health care world and help you make informed decisions to live your best life.
Zoe Rothblatt 01:03
And today we’re going to talk about a recent ruling by a federal judge around some medication that’s been approved decades ago, and you know how this impacts our community living with chronic disease. But before we get into that, we do have a few news updates.
Steven Newmark 01:18
Yeah, so let’s get into it. The FDA is set to authorize a second booster.
Zoe Rothblatt 01:23
Very cool. So yeah, they’re expected to announce this and this would be a second Omicron-specific booster for those who are 65 and older, and those with a weakened immune system, so very pertinent to our community.
Steven Newmark 01:36
Yeah, absolutely. Once authorized eligible individuals can get it if it has been four months since the first shot of the bivalent booster.
Zoe Rothblatt 01:43
Yeah, we’ll definitely keep our community updated on this. Our second news item; I know you love these, we have quick poll results. This time, we asked about exercise habits, essentially, because COVID just changed the way a lot of us exercise. Like for instance, we don’t have a commute anymore. So we lost that daily walking that we once had, and have to find different ways. And we’re just curious what our community does, especially living with chronic disease where it’s unpredictable. So this is what the results showed: Most people in fact exercise daily or weekly, about half said, you know, multiple times a week to every day. And then about 20% said often weekly. So that means that around 70% are exercising daily or weekly, which was pretty surprising.
Steven Newmark 02:27
Pretty high, for sure. What does that mean exercise? I’m just curious. How do you define exercise? Like walking into the garage to get the car? Does that count? When do you cross the threshold?
Zoe Rothblatt 02:38
I think it’s like about intentional movement. We didn’t ask specifically about what kinds of exercise, it was more looking at how often and what barriers. So two of the biggest barriers were chronic pain and chronic fatigue that stop people from exercising. But I would say it’s more just like with the intention to get movement into your day would count as exercise.
Steven Newmark 02:57
Interesting. I mean, when it comes to intentionally exercising as you put it, or intentionally moving, intentional movement, personally, I find the biggest barrier to be time… to set aside time. Like you said, if you’re commuting, you don’t have to set aside time if you’re walking, you know, that’s sort of built into your day. But if you need to set aside time to go to a gym, or to set aside time to say; Hey, I’m gonna walk for the next 30 minutes around the neighborhood. That’s my number one barrier.
Zoe Rothblatt 03:22
19% agree with you. They said not enough time.
Steven Newmark 03:25
Here you go. It’s like Family Feud, number three on the board. But I will say this, talking about like changing habits because of the pandemic, so I used to… I like working out in the middle of the day, I’ve never been someone who is able to wake up early and work an exercise. I’ve never been somebody who’s able to exercise at the end of a workday. I’m just too exhausted. And I find, frankly, to my dismay, that the gyms are much more crowded during the day because people have much more flexibility and their workday. So I don’t get that. I used to like going to the gym, particularly when it was less crowded, so now I don’t have that advantage. So now I find myself going earlier and earlier into like the seven o’clock hour, which I don’t like to do. But anyway, you know, just one digression on how exercise habits have changed in that sense.
Zoe Rothblatt 04:07
Exactly. It’s different for everyone. And like you said, you have to find what works for you in order to make it a regular practice.
Steven Newmark 04:14
Definitely, definitely.
Zoe Rothblatt 04:15
So let’s jump into our topic. Steven, I’m hoping you could walk us through the timeline, some of the big, you know, rulings here as a lawyer, I’d love to hear your perspective on what’s going on.
Steven Newmark 04:26
So what we’re talking about is that last week, a federal judge in Texas issued a ruling to revoke the Food and Drug Administration’s 23-year-old approval of a medication known as mifepristone. Now this medication is used primarily for terminating pregnancy and also has other medical uses as well. It was approved in the year 2000. So It’s been on the market for 23 years, but the judge is essentially over ruling the FTA’s rule approval and saying that it’s not safe and effective. And I’m really oversimplifying things. In a real… in the real world scenario as we’re recording, the judge put a seven day stay on. The Department of Justice is asking to have that state extended, is looking to get to the appellate court. That’s the Fifth Circuit Court of Appeals to have that listened to. But in blunt terms, as best as any… as legal commentators can tell, this is the first time a judge has essentially overruled the FDA. And this ruling could open the door to lawsuits, to contest approvals or regulatory decisions related to other medications or vaccines. We live in this crazy anti-vax world, and if this decision is upheld, it could really shake the very framework of patients’ reliance and doctors’ reliance and the pharmaceutical’s industry reliance on the FDA’s pathways for developing new drugs.
Zoe Rothblatt 05:41
There’s so many layers to this. I think the first is that, like you said, this is undermining the FDA’s authority. We talk about this all the time, as our listeners may know, I have another podcast called Breaking Down Biosimilars, and especially we talk about this in the context of biosimilars about the FDA’s is rigorous studying of medications and how they look at safety and efficacy and how they have to run animal studies, human clinical trials, post market surveillance, all this stuff to say that a medication’s safe. This one in particular has been around 23 years, you know, we look at that and say: Okay, this is like a tried and true medication that’s been around for a long time. We see the effects of it, and we know that it’s safe in post-market surveillance. So it’s really shocking to see that for the first time a court has moved to order the removal of a drug like this.
Steven Newmark 06:29
Yeah, to remove it from the market is quite unprece… You know, I don’t want to hate to overuse the word, but it’s unbelievable, to say the least. You know, let’s just take a step back and give a little bit of background on who the FDA is, where their authority comes from. In 1939, Congress gave the FDA overarching authority to determine whether drugs are safe and effective in the Food, Drug and Cosmetic Act of 1938. Drug companies must conduct a series of animal studies and human clinical trials that can take years and millions of dollars, frankly, to provide enough evidence to the FDA that a drug is safe and effective in treating a disease or a medical condition.
Zoe Rothblatt 07:06
And now this ruling is coming in and contradicting all that work that the FDA does. It’s put the FDA’s authority into a spotlight like never before. And the case is probably going to go to the Supreme Court and just as someone living with chronic illness, and you know, we represent people with chronic illness, it genuinely scares me that judges and people in this country are able to fight and undermine the FDA like this, especially as someone who relies on medications to keep me functioning in everyday life. I’m just wondering to what end… where does this go?
Steven Newmark 07:39
Yeah, that’s a… that’s a great question. Like, you know, we were saying earlier, it’s scary because if a judge, a single judge, anywhere in the country is able to essentially pull a product from the market, you can envision scenarios where anti-vax folks are able to find an anti-vax judge with sympathetic views and pull a vaccine on the market based upon similar ruling, if you will. And you know, not to mention, basically any medication folks don’t like, and they can get to a judge, and the judge could issue the ruling. So it’s scary to say the least. I mean, since the Food Drug and Cosmetic Act passed in 1938, courts have usually defered to the federal agencies’ scientific expertise and oversight.
Zoe Rothblatt 08:18
And you know, we saw this this past summer with methotrexate access, and while that seems to have died down, and of course, people were restricted access, it seems to the situation improved a bit. But we know that when situations like this are happening, it also does cause you know, pharmacists to take pause, doctors to take pause. And even though we don’t know the final ruling, yet, people could have restricted access already, even though it’s still available. And all this news gets people to be overly cautious and people are not able to access their medications like how we saw with methotrexate. I’ve seen some states are already stockpiling this medication, specifically so people can have access. But it’s also just the implication of the news going around has such an impact on, you know, direct patient access already.
Steven Newmark 09:07
Yeah, no, absolutely. Like you said, it essentially throws chaos into the world of the pharmaceutical industry, the medical community and the patient community. It’s a head scratcher, and people don’t know what to do. And oftentimes people can be cautious and say: Well, I’d rather just not get involved and the easiest way to do that is if I’m a doctor not to prescribe a medication, if I’m a pharmacist, it’s not to fulfill certain prescriptions. And it’s scary if you’re a patient because throughout all of this, the patient’s voice tends to get lost, the individuals who are out there being most affected by such a I call it a perverse authority seen in our judiciary.
Zoe Rothblatt 09:41
So let’s walk through some of the timeline of this what happened exactly after the judge, you know, declared that this approval should be invalid?
Steven Newmark 09:50
Sure. As I mentioned, he did put a seven day stay on that… on the exact same day, I guess coincidentally, or perhaps not coincidentally, I don’t really know, a case in Washington state that was brought by Democratic Attorney General’s from 17 states, and the District of Columbia was live and it was challenging extra restrictions that the FDA imposes on Mifepristone. And in a preliminary injunction, the judge there in Washington State ordered the FDA specifically not to limit the drugs availability in those jurisdictions. So you’re talking about 17 states plus the District of Columbia have been ordered not to limit the availability. So now you have essentially two competing rulings, and those are in two different circuits not to get too bogged down, but the appellate courts in the United States are broken down into nine circuits. So you’re dealing with two separate circuits, one out of Texas and one out of Washington State. And if there’s a conflict at the circuit level as well, eventually, it’s likely to make its way up to the Supreme Court. And in the immediate aftermath in the Texas case, the Justice Department, which is representing the FDA, of course, immediately said it would appeal the Texas injunction to the Fifth Circuit Court of Appeals.
Zoe Rothblatt 10:54
So what happens next? This is like the lot of legal jargon.
Steven Newmark 10:58
Yeah, there’s a lot of legal jargon. That’s true. So some folks have called upon the Biden administration and Health and Human Services to ignore the judge’s ruling. They have actually come out and said that they will not ignore a judge’s ruling. That’s probably not the smartest move. It’s also not a way to endear yourself to the Supreme Court where you ultimately want to get a ruling in your favor. So the likely scenario is that this makes its way to the Supreme Court. Now, does the ruling get stayed until it gets the Supreme Court, that remains to be seen? And what happens in those 17 states versus the rest of the country? Again, it’s very chaotic, to say the least we’re dealing with one specific drug. I will add, they’re starting to become political pressure there, that the medical community and the pharmaceutical industry have put out, missives decrying this ruling. So we’ll see where it goes is my tepid answer. I know, it’s not fun to say that. Let me get back into more comfortable waters for myself. I will just say the ruling could violate the Constitution’s Commerce Clause, which prohibits states from impairing interstate commerce, and also the Supremacy Clause which says the federal laws – in this case Congress’s decision to authorize the FDA to regulate drugs – have priority over conflicting state laws. This theory has rarely been tested in court. However, there was a case that involved Massachusetts about a decade ago, where Massachusetts tried to ban a new opioid because state officials worried that the drug itself could be abused, leading to addiction or overdose. A federal judge in that case ruled that states do not have authority on their own to ban such drug. So not exactly on point because that was done by the state of Massachusetts and not by a federal judge. But it gives you an idea of how the federal judiciary has differed generally to the FDA.
Zoe Rothblatt 12:41
Right. So could this case be used then in support of the precedent to uphold the availability of the drug?
Steven Newmark 12:47
Yeah, absolutely. Absolutely. General precedent is under the Commerce Clause, and under the Supremacy Clause. You defer to Congress’s decision to authorize the FDA to regulate drugs such as the one issue here.
Zoe Rothblatt 13:01
Well, you know, that kind of just begs me to ask how then a judge is even capable of making this ruling in the first place if these clauses are in place at federal power?
Steven Newmark 13:11
Well, you know, rulings are made by judges, judges are humans, humans, they’re not always… they don’t always get things right, and that you get overturned. That’s why there are appellate courts to sometimes overrule lower courts and so forth. And even then, even at the highest level judges, shall we say, sometimes get things wrong. We’ve had some horrific decisions over the years and are even at the Supreme Court level, we’ve had the Dred Scott case Plessy versus Ferguson, which said that separate but equal did not violate equal protection clauses of the 14th amendment that was overturned decades later by Brown versus Board of Education. So there are bad rulings that occur. What a lot of legal scholars were considered to be bad rulings, it happens. And you know, that’s just how I guess that’s the best answer I can possibly give is how it can be done. But I will add, judges are human so they are receptive to the real world. And in this situation, upending the FDA is authority could be disruptive to an entire industry, the pharmaceutical industry, to patients to the medical community. You know, the industry itself spends many years and millions of dollars looking for drug approval. If FDA approval can be withheld by a judge, by one federal judge, somewhere in the United States, this could really stifle drug manufacturers from seeking out new therapies. So, again, these folks live in the real world, these judges, so hopefully, they’ll be receptive to the real world consequences of their ruling.
Zoe Rothblatt 14:34
Well, that’s right. That’s what’s scary, too, right. It’s not just attacking a current drug. It also has implications for innovation and just uncertainty for the entire biopharma industry for years to come if this is actually capable of going through.
Steven Newmark 14:48
Right. Yeah, it’s scary. Knock on wood. You know, we’ll certainly keep our eyes on This. And we’ll see where it goes. As I said, it’s likely to end up all the way to Supreme Court.
Zoe Rothblatt 14:56
In a scenario like this is there anything that we can do, just as a patient, as a person, like who can we call when something goes to the Supreme Court like this?
Steven Newmark 15:06
Sure. Well, there is nothing at the Supreme Court. So there’s no one to call right now. I think we’re at the phase where it’s just getting educated and on what this does. Inserting your voice to elected officials is always a welcome thing. The idea that you don’t want to live in a world where you’re worried that you take certain cocktail of drugs, and you don’t want to find… you know, you don’t want to live in a world where a non-experted medical expert judge can revoke the use of those drugs is something that is scary for you. And that’s something that can be expressed, certainly to elected officials. And, you know, there may come a moment where there’s an opportunity to insert yourself in the litigation itself as an… as an amicus curiae, which means friend of the court. Those are individuals who may not be litigants in the case, plaintiff or defendant, but have, you know, some particular special concern about the outcome of how that case could affect them going forward. So that’s… that could be an area where groups like the Global Healthy Living Foundation might insert themselves and might be seeking patients to help with that.
Zoe Rothblatt 16:04
So bottom line, get educated and stay tuned. We will certainly keep our community updated and raise your voice wherever you can.
Steven Newmark 16:11
Absolutely. Absolutely. Yeah.
Zoe Rothblatt 16:14
All right, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 16:18
I learned that our folks, our GHLF folks like to exercise so it’s good for everyone.
Zoe Rothblatt 16:23
Excellent. I almost forgot about that in the middle of all of this chaos. And you know, for me, I just learned a lot about the judicial process and all of this from you. So thank you for that debrief.
Steven Newmark 16:35
Well, we hope that you’ll learned something too. And before you go, we definitely want you to check out all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 16:44
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, please give us a rating and check us out on YouTube. Hit that subscribe button wherever you listen. I’m Zoe Rothblatt.
Steven Newmark 16:58
I’m Steven Newmark. We’ll see you next time.
Narrator 17:03
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S6, Ep1- Protecting Patient Access to Health Care
Our hosts discuss important pieces of legislation in the U.S. that help improve access to care, both federally and around the states, and how the Global Healthy Living Foundation’s 50-State Network has been advocating on the ground. The hosts also break down big news in health insurance, including the recent attacks on the Affordable Care Act and why millions may soon lose access to Medicaid.
“During the pandemic… Medicaid enrollment grew by 5 million people between 2020 and 2022. So that’s a lot of people who are on it [Medicaid] and could potentially be losing coverage, maybe even more than that. And it’s already starting to happen around some states,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
S6, Ep01- Protecting Patient Access to Health Care
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
“Millions are potentially going to lose access to Medicaid what is going on?
Steven Newmark 00:13
Yeah, so during the pandemic, the government suspended procedures that would remove people from Medicaid rolls. In the past, people would regularly lose their Medicaid coverage if they started making too much money to qualify for the program or if they moved out of state.”
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 00:39
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:50
Thanks everyone for your patience during our break, we are back with a new season. Season six, how exciting!
Steven Newmark 00:57
Very exciting. Thanks to all our listeners, and today we’re going to catch up on some news together, and also about some important bills that we’ve been following around the country.
Zoe Rothblatt 01:06
Yeah, so let’s start there. We’ve been busy advocating. Let’s do a: ‘Here’s what you should know’, both federally and around the states. Steven, maybe you could kick it off. I know you’re recently in D.C.
Steven Newmark 01:16
Yes, I was in Washington D.C. talking about copay accumulators with some great individuals starting with JP Summers. She is a Patient Advocate and Community Outreach Manager here at GHLF. I was also joined at the event by the Association of Women in Rheumatology or AWIR, and we were able to discuss the issue of copay accumulators and their detrimental impact on patients. Specifically, we were there to talk about a piece of legislation called the Help Copays Act, which we’re hoping will pass in Congress this year, and as a result, it would ensure that all payments made by patients or on behalf of patients are counted towards their deductible. Using accumulators is a tool that insurance companies often deploy when patients are able to use copay, coupons or have others pay for their high cost medications. It does not count towards their deductible, so it makes it harder for them to reach their deductible and thus, they continue to remain on the hook for this… for payments later in the calendar year.
Zoe Rothblatt 02:16
And what was the sense when you were there? Did you feel like the legislation could pass this year? Were the legislators overall supportive? Do people have any interesting questions?
Steven Newmark 02:26
That’s a great question. There was definitely… I think it was a combination of meeting with folks who were already strong supporters on both sides of the aisle, which is great trying to get them to push a little bit harder, meeting folks who were at the opposite end of the spectrum, not in a sense that they were not supporters, but in the sense that they were not aware of these programs, and not familiar with these programs. So it was a good first step to engage these folks on accumulators and what they do detrimentally towards patients. And then there was a cluster of folks who were sort of in the middle. They were aware of these programs, perhaps a little more educated, they hadn’t yet signed on to the legislation, and they’re interested in continuing the dialogues. So it’s a good… I’d say we’re in a good phase. Look, we have legislation that’s introduced, it’s bipartisan. Is it likely to pass? The one thing I will say in my professional career dealing with policy and advocacy is that patience is most certainly a virtue. It takes time and sometimes it takes several legislative sessions, that’s unfortunate. In certain cases, that’s actually a good thing to let legislation simmer for a bit. You know, obviously we want to pass it as quickly as possible but I think that there are still a lot of elected officials and staff who are unaware of what accumulators are, who don’t get to hear the patient perspective enough. And I think it says to us; we have more work to do. And to anyone listening, it’s important to continue to play a role and to let folks, policymakers, and elected officials know what it’s like to live with a chronic condition, and when dealing with accumulators, the affordability issues at play
Zoe Rothblatt 03:53
100%. And I mean, this one, it’s such a simple issue, but also confusing, like, you might not even know you have an accumulator. It’s like kind of hidden in there. I didn’t even realize I had one at first, and then it’s obviously so upsetting when you learn about it, and you’re paying so much money to take care of yourself. So yeah, I mean, everyone can definitely join our 50-State Network or contact your local representatives and let them know that this issue is important to you. We also had the opportunity to advocate for this Help Copays Act and the Safe Step Act, at the DDNC spring forum, so that’s the Digestive Disease National Coalition, which is always fun for us. We join every year. This year our colleague, Corey Greenblatt, Associate Director of Policy and Advocacy went and he led a few teams around to advocate for these bills and felt similarly that legislators knew the basics of these bills and it wasn’t like the 101 explaining and now we could get into deeper conversation and Corey felt like that’s always a good sign. Of course, there’s more work to be done. But the fact that there’s more comfortability among the legislative offices with these bills is really exciting for us.
Steven Newmark 05:00
For sure, it’s great work that we’re doing around the 50 states, and it’s good to get out there. And with DDNC that was a great opportunity for us to join with a coalition of other like-minded groups and continue to inform elected officials and their staffs about what’s happening with chronically ill individuals and how some of this legislation can help.
Zoe Rothblatt 05:16
And then around the States, we’ve been pretty active. JP, you mentioned before, she was able to testify in Austin, Texas for, you know, similarly, about co pays, but this time on the state level, so she was able to share perspective as an advocate from GHLF. But also as someone who experienced co pays herself and it just always powerful to hear directly from patients.
Steven Newmark 05:40
Yeah, absolutely. And in Texas, there is legislation at the state level that is working its way through the House Select Committee. So hopefully, we’ll get some news to report out of there.
Zoe Rothblatt 05:50
I hope so too. And then some West Coast advocacy that we’ve been involved in. Our colleagues did a little advocacy road trip with some patient advocates going to Washington, Oregon and California. Unfortunately, both the bills in Washington and Oregon died in session. But like we said before, it’s good to lay a foundation. Patience is important, stuff can get reintroduced. So one of those in Oregon was focused on copay accumulator adjusters, and then the other one in Washington was focused on Share The Savings. I’m not sure if we mentioned this so much on the podcast, so it might be worth a quick summary of what that means. It basically requires that patients benefit from the savings that insurers receive from manufacturers. So this bill specifically would require that at least 75% of the rebates and fees negotiated by insurers and pharmacy benefit managers are passed on to patients. Ultimately, this helps reduce financial burden and protect access to affordable medications.
Steven Newmark 06:47
Yeah, excellent. No, that’s great. Unfortunately, we need more legislation like this. And it takes a lot of work to keep pushing ahead. I know these issues can sound esoteric, they can be tough to wrap your head around. And you know, that’s why we have to keep fighting.
Zoe Rothblatt 07:01
Yeah. And then in California, we focused on a legislation that helps again with copay accumulator adjusters. And what was so interesting was that two different legislative offices said that with GHLF coming with patients, it was the first time they ever heard directly from patients about these bills. So like you’re saying; more work to be done.
Steven Newmark 07:22
I mean, that’s incredible. And that really speaks to the work of GHLF in bringing patients to state capitals, to Washington, to meet directly with legislators. There is nothing more powerful for a legislator than to hear directly from person impacted by a piece of legislation. And in our case, there’s nothing more powerful than hearing directly from a patient. So it’s great that our 50-State Network members can join us when we try to advocate around the 50 states and in Washington.
Zoe Rothblatt 07:50
Exactly. It brings it back down to the individual. And that’s what we’re all about: making sure patients feel good. So let’s transition a little bit. That was our recap what’s going on around the states advocating, but there’s also some insurance things been going on the past few weeks.
Steven Newmark 08:07
Some bad news going on actually. I don’t want to talk about it.
Zoe Rothblatt 08:11
I know.
Steven Newmark 08:11
But let’s do it. Let’s do it. We have to.
Zoe Rothblatt 08:13
Okay, so the first on our agenda is Medicaid. Millions are potentially going to lose access to Medicaid. What is going on?
Steven Newmark 08:21
Yeah, so in simplest terms, during the pandemic, the government suspended procedures that would remove people from Medicaid rolls. In the past, people would regularly lose their Medicaid coverage if they started making too much money to qualify for the program, or if they moved out of state. This was somewhat common for people who are… they call them on the bubble, where any given year they might be above or below the threshold. It’s almost ironically a disincentive sometimes to earn more money. But during the pandemic, these procedures were removed, so folks wouldn’t have to worry about that and get kicked off the rolls.
Zoe Rothblatt 08:52
And in fact, during the pandemic, because this was removed, or I guess… we can assume because this was removed, Medicaid enrollment grew by 5 million people between 2020 and 2022. So that’s a lot of people who are on it and could potentially be losing coverage, maybe even more than that. And it’s already starting to happen around some states. I think we’re going to see more throughout April. The good news is that not all ineligible people will be dropped at once. States have different timelines. Most states are expected to take between nine months and a full year to complete this verification process. So there’s a good amount of time to check in on what’s happening.
Steven Newmark 09:33
Yeah, and check in is really the operative phrase there because many people are not being notified about this until it’s happening. And we could end up in limbo in with these individuals with no insurance, because they make too much for Medicaid, but they don’t make enough to get subsidies for the Affordable Care Act.
Zoe Rothblatt 09:51
So you know, what can you do if you’re on Medicaid; look out for the renewal form and any notifications whether it’s mail, phone, text, email. You have 30 days to fill out the form. So definitely keep an eye out to see if you’ve received any of those or we’ll be receiving soon.
Steven Newmark 10:07
Yeah, absolutely. And if you are removed, other options that you have, you know, potentially employer-based insurance, if that’s an option, you have the Affordable Care Act marketplace, including all the subsidies to help you afford different plans. You should note that your child may still be eligible under CHIP. That’s the Children’s Health Insurance Program. And there’s a special enrollment for people who are dropped from Medicaid, which started on March 31, and will last through July 31, 2024. And you can apply for coverage 60 days before your Medicaid is scheduled to end.
Zoe Rothblatt 10:38
Yeah, well that’s good to know because hopefully, that’ll stop some people from ending up in limbo. Obviously, we talk about this all the time, like insurance is so important. Regularly… but especially when you have a chronic illness and we take you know, prescriptions regularly, see our doctors regularly, it’s… Insurance is a lifeline, and it’s scary to potentially lose that access. Hopefully, there’s enough supports out there that people can get a new plan. And if you do change plans, I know you guys know this, but always remember to check your doctor coverage and prescription coverage to make sure that you’ll be able to continue your care as you were.
Steven Newmark 11:13
Definitely. There were some other news as well, regarding the Affordable Care Act, and specifically the provision in the Affordable Care Act about preventive health care. A federal judge in Texas ruled that employers cannot be required to cover specified preventive health services under the Affordable Care Act.
Zoe Rothblatt 11:30
I know. This was like so surprising to me, I thought we were done attacking the ACA, but apparently not.
Steven Newmark 11:36
Right. Well, this is one of the most popular provisions of the ACA, if you will, the idea that insurance coverage is required to cover certain preventive health screenings. You know, it’s important for folks who are healthy and folks who are not healthy to get preventive care and get regular checkups. And you know, so we’ll see what kind of damage this does. The Biden administration is appealing that decision and the case is now on its way to the Fifth Circuit Court of Appeals.
Zoe Rothblatt 12:01
So we’ll wait to hear more news. We don’t know the full extent of the impact, especially as it gets appealed. But it could limit access to keep running of services, you know, aimed at early detection of disease, like lung and colorectal cancer, depression, hypertension, a lot of these are comorbidities for people in our community who live with various chronic diseases. And it’s just really hard to learn that these services that were free now, while they still may be offered, they just might have a co-pay or deductible attached to them.
Steven Newmark 12:32
Yeah, and let’s not forget insurance plans still have the option, of course to cover these services for free. But without this in place, they may start charging co-pays and cut into deductibles. So something to think about.
Zoe Rothblatt 12:43
Definitely. Well, you know, we’ll keep everyone informed on these insurance issues and around the states.
Zoe Rothblatt 12:50
That brings us to the close of our show, Steven, what did you learn today?
Steven Newmark 12:53
Well, I didn’t know that we… we apparently were the first group to bring patients at the California state legislature or at least to the specific offices that we got to visit. So it just shows a great work that we are doing here.
Zoe Rothblatt 13:05
And I learned from you a bit more about what’s going on with Medicaid enrollment and why people may be losing access.
Steven Newmark 13:13
Well, we hope that you’ll learn something too. We also want to mention; check out all of our great podcasts at GHLF. A specific one we’ll talk about is Talking Head Pain hosted by our friend Joe Coe where he interviews neurology experts and people living with migraine.
Zoe Rothblatt 13:27
Definitely, check it out. 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, please give us a rating and check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 13:40
I’m Steven Newmark. We’ll see you next time.
Narrator 13:45
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep23- COVID at Year 3: What We’ve Learned
It’s been three years since the World Health Organization declared COVID-19 a pandemic. Our hosts talk about where we are at now with fighting the virus, what we’ve learned over the years, and how our community is feeling.
“Early on, I felt like there was a high level of concern for the community, for others. People masking up for others, for those in the community who have chronic disease, who are elderly. And that seems to have just gone by the wayside,” says co-host Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
S5, Ep23- COVID at Year 3: What We’ve Learned
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:09
Early on, I felt like there was a high level of concern for the community, for others, people masking up for others for those in the community who have chronic disease, who are elderly. And that seems to have just gone by the wayside.
Steven Newmark 00:24
Welcome to The Health Advocates, a podcast that breaks down and 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, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:38
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:44
Today, we’re gonna discuss COVID and where we’re at now, since it’s been three years since the World Health Organization declared COVID a pandemic. Pretty hard to believe. First, we do have a news update.
Steven Newmark 00:56
First of all three years, okay, feels like three decades. But okay, but you mentioned a news update. Last week in a recent episode, we discussed the Cochrane review on masking and how the findings were misleading. And that it made it seem as though masks were not effective. Cochrane has now revised their summary owning up to the fact that their wording was misleading.
Zoe Rothblatt 01:17
Yeah, they basically explained that the review examined whether interventions to promote mask wearing helped slow the spread of respiratory viruses. So COVID and flu. And then, you know, they said, given the limitations in the evidence, the review is not able to, you know, make a conclusion on the question of whether mass wearing itself reduces people’s risk of contracting or spreading respiratory viruses, just you know, if they were looking at whether masks were promoted if people wore them.
Steven Newmark 01:48
Right, and that’s basically what we discussed a few episodes back. Essentially, what we learned from the Cochrane Review is that, especially before the pandemic, distributing masks did not lead people to wear them, which is why their effect on transmission could not be confidently evaluated.
Zoe Rothblatt 02:02
That rings true here, you know, it was hard to get people to wear a mask, even I see free masks out there sometimes and signs and people aren’t wearing them. So I guess, to me, that conclusion makes sense.
Steven Newmark 02:15
Yeah. And that’s during the pandemic, post pandemic, whatever your you know, when masking became somewhat normal, so you can only imagine what it was like trying to distribute and get people to wear masks in the before times. In fact, not so funny story. I remember traveling on an airline in February of 2020, you know, when the word COVID was in the ether, but not fully out there. A guy came on the plane with a mask. And I remember thinking to myself, “What a weirdo.” Shame on me, that’s where we were three years and one month ago, if you will.
Zoe Rothblatt 02:47
Yeah, that’s where we were. I remember, like starting to see people wipe things down. And I’m like, “Okay, maybe should I do that? That’s a little weird.” And it’s like, now you look at at where we’ve come through years later. And it’s a totally different mindset.
Steven Newmark 03:03
Right, right. Well, you know, that brings us to our topic for today, just discussing where we are, we’re at the three year anniversary, whatever you want to call it, of when COVID was declared a World Health pandemic. And we talked about this last year for COVID at year two, we mentioned the things that have changed or were brought to light during the COVID. And it wasn’t all bad. We got telehealth, for example.
Zoe Rothblatt 03:25
I haven’t used telehealth recently, but I’m like so glad that we still have the option there. I’m worried about what’s to come in May when the health emergency ends, we’ll see how that affects providers. I know one of my friends got a message from her provider saying that, you know, when the health emergency ends in May, and they won’t be able to do telehealth anymore. So you know, there’s a lot to see on that in the coming months.
Steven Newmark 03:49
Absolutely. We learn new lingo things like zoom fatigue, social bubbles, six feet, social distancing, and in potentially positive we learn to enjoy outdoor dining. Depending on your take. I don’t know how you feel about that.
Zoe Rothblatt 04:03
I mean, I remember in New York, they set up these like great establishments outside just like brought the city to life to have that so yeah, there were some good things. There was also some negatives negatives to say the least. Yeah, right. COVID really highlighted the glaring health disparities in our system. We saw who was getting sicker and hospitalized from marginalized communities, our mental health has certainly suffered. It’s been a long three years and I know we say like it’s hard to believe it’s three years and then that time has gone by but it’s also had a huge impact on our communities mental health and you know, the public generally.
Steven Newmark 04:40
Yea, no know, for sure our mental health is definitely suffered. I guess one positive to that, if I may turn that is that I think we’re more aware of our mental health than we were three years ago. So hopefully, we can address those issues better than we might have been able to pre pandemic.
Zoe Rothblatt 04:56
I think so too. And then ultimately, you know, we got vaccines, treatments, rapid tests; a lot of innovation.
Steven Newmark 05:02
Yeah, the medical and scientific communities really came together. And dare I say, saved us through the vaccines through their treatments through rapid tests. And then it was, you know, great to see the marshaling of those resources and, and what can be done when you put your mind to it.
Zoe Rothblatt 05:16
So where are we at now, the death toll is nearing 7 million worldwide and 1.1 million deaths in the US. Um, you know, I saw an interesting statistic from the Wall Street Journal, the virus ranked as the nation’s third leading cause of death in 2020, and 2021. Right behind heart disease and cancer.
Steven Newmark 05:35
Yeah. And infectious disease hasn’t ranked that high, since the combination of pneumonia and flu 85 years ago,
Zoe Rothblatt 05:41
Wow. COVID just become a part of our everyday life. And sometimes I just find it important to look at these statistics. And remember that you know, those 7 million deaths are each a person that has a family and loved ones out there. And, you know, it is really serious. And when you say, you know, something as ranked as high since 85 years ago, like it really is a stark reminder of the impact of COVID.
Steven Newmark 06:06
Yeah, absolutely. But let’s also remember that vaccines, as well as past infections, have less than a threat right now. People are getting less severe illnesses on a whole compared to where we were two years ago, three years ago, of course,
Zoe Rothblatt 06:18
Yeah. And that’s definitely a positive, I would say that we still have a lot of questions about how the virus behaves, its mutations and long term effects. And while we do have vaccines and treatment, you know, we’re still learning a lot.
Steven Newmark 06:31
Yeah, no, absolutely. And you mentioned mutations, one, knock on wood, please, please, please knock on wood. We’re still in the Omicron phase, and it has not mutated out of Omicron, thankfully, which is good. But of course, there’s always that threat.
Zoe Rothblatt 06:46
I know, do not threaten me with that COVID, our mental health can’t handle it. You know, I thought it would be a little interesting to look at the flu for a minute. I was like, what happened there in the end? And how did we get out of it? Or how did it become, you know, the way it is today. So just a quick timeline, the influenza pandemic lasted 1918 to 20. And it wasn’t until the 30s and 40s, that researchers were studying the flu viruses and developed flu vaccines. At this time, it was mainly military members that could get the vaccine first. And then ultimately, in 1945, the first flu vaccines were approved for people who were in the military. And I just thought that timeline was so interesting, because when you think about like COVID, hit 2020. At December 2020, health care workers are getting vaccines, right? It’s right. It’s like incredible what we’ve done.
Steven Newmark 07:40
Yeah, it’s incredible how much faster we’re able to respond. That’s that’s certainly something to be positive about based on the flu curve. As you mentioned, we’re way ahead of that curve. And you know, it look, it took decades to figure out the vaccines, it took a while also to figure out the seasonal nature of the flu. Right, you know, and the system for predicting flu is still not perfect. It’s far from it. But you know, hopefully with more scientists and virologists working their magic, we can get better production as the years go on.
Zoe Rothblatt 08:09
Yeah. And I guess I learned from this that like, it can take time, you know, scientists are really working on this. And while it may feel like we might be behind the curve with COVID, because we don’t know the patterns yet. Like, it just might take some time to figure out but this brought me comfort that it will get figured out just looking at the pattern of flu and the timeline and that history.
Steven Newmark 08:32
Yeah, I agree with that. I think it will get out, you know, get figured out. It’ll be a normal part of our lives the way flu is a normal part of our lives. And you know, we’re not at that stage yet. But we’re also not at the phase we were in one year ago, two years ago, three years ago.
Zoe Rothblatt 08:44
I know, it’s good. We’re not at that phase. It’s hard to think back on it.
Steven Newmark 08:49
I know. I try not to.
Zoe Rothblatt 08:50
So what our vaccine rates looking like in the US right now?
Steven Newmark 08:56
Well, according to the CDC, only 16% of United States have received the bi-vaillant booster shot. The majority who got it are in the 65 and over group or almost 42% of that age group got the booster. That compares to only the primary series by comparison. 69% completed the primary series of the first few shots.
Zoe Rothblatt 09:15
That’s a huge lag off, 69 to 16%.
Steven Newmark 09:20
Yes, it is. Don’t forget, a lot of people even who have been vaccinated, still contracted COVID. So that’s I’m oversimplifying, I could do that. Because I’m not a doctor. It’s almost like getting a booster if you will to have contracted it. But yeah, it is a big drop off. I think there was definitely less of a push for the bi-vaillant boosters, there was definitely fatigue and, you know, the anti vaccine voices are loud. And you know, there are more than a few who will say, “Look, I’ll do I’ll do the first two, but that’s it. I’m stopping there.” So we’ll see. We’ll see where that goes when it comes to the similarities with the flu vaccine and going forward.
Zoe Rothblatt 09:55
I was about to say that I’m curious if once it becomes an annual shot and this regular thing if rates go up and people are more willing to just get the annual shot, because when you look at flu shot rates, it’s similar to last year, it’s at around 47% this year, 44% last year. It’s interesting that that number is so much higher than the people getting the bi-vaillant booster shot.
Steven Newmark 10:22
Yeah, I mean, again, it probably has, there’s so many factors at play. One is that the flu vaccine has been around as maybe more part of that your normal course, your annual course. It probably has something to do with the idea that the people believe the flu vaccine perhaps has been tested more, if you will, even though it’s not necessarily accurate, but it’s been around longer. And it probably has something to do with as I mentioned, earlier, folks have contracted COVID, even after getting the vaccine, so they felt that there was some protection that they had built in.
Zoe Rothblatt 10:54
I got COVID I hope I’m super protected now against these new.
Steven Newmark 10:58
Ah, yeah, well, they say the ultimate protection is, I don’t have it in front of me these studies, but they do say the ultimate protection is the combination of the vaccine and an infection is the highest level.
Zoe Rothblatt 11:09
Yeah, I get that memory like deep in your body. Never forget this virus and.
Steven Newmark 11:14
Right, right, that’s a good thing in some strange way that you had it and you’re fine. I had it and I’m fine. You know, we’ll see what happens. I also sometimes do wonder, by the way, I don’t know about you, but you had it more recently than me. I sometimes wonder whether I’ve contracted it and didn’t know it. Since then. If my body was so ready to fight that it came, my body knew what was going on, and took care of it.
Zoe Rothblatt 11:35
Sometimes I play that game like is it my chronic illness? Or did I catch COVID? The flu? Is it allergies? Symptoms can get you thinking like so deep and wide.
Steven Newmark 11:47
Definitely, definitely. Frankly, I think it’s more than a 50% chance it invaded my body at least a second more than once a second time, if that makes sense.
Zoe Rothblatt 11:56
Yeah. You know, whatever helps you sleep at night. I know, we just mentioned mental health, it’s like, I have to believe that that infection helped give me antibodies. Oh, for sure. You know, speaking of just like mental health, our community, we can’t stress this enough that people in our community are still feeling ignored, whether it be by society, friends and family. We get a lot of messages in our COVID Support Program asking, you know, for help about how they can be with family in a safe way, and that they’re feeling a little pressured. And you also get messages that people sometimes feel ignored by their doctors, you know, the health care facilities, a lot of them are removing masks now and people in our community are asking what to do in that setting and saying, “Could there be a separate waiting room for people with masks versus not masks”. And I just think it’s really important to share that concern that’s coming from people with chronic illness.
Steven Newmark 12:56
We’ve mentioned it so many times. But I think one of the sad things, results of this pandemic was early on, I felt like there was a high level of concern for the community for others, people masking up for others for those of the community who have chronic disease who are elderly, and that seems to have just gone by the wayside. It seems we’re in this every man, every person for themselves situation now, which is just sad.
Zoe Rothblatt 13:24
Yeah. And you know, aside from from that feeling, people really want specific information, you know, similar to seeking out information on your chronic disease and how it affects your life, like people really want COVID information that’s specific to someone with an autoimmune disease or chronic disease, whatever it may be. And while researchers are looking into these, it’s not talked about enough in mainstream media. And I feel like we have a really important role to report stuff like that out.
Steven Newmark 13:53
Absolutely. The last thing we should discuss is long COVID and where we are with long COVID. Well long COVID was frankly, my biggest fear by far during the pandemic once I you know, I hunkered down. I wasn’t afraid of getting sick early on, if that makes sense. I mean, I was just like everyone else was, you know, I was comfortable enough that I could get to a hospital if I needed to, but I was always afraid what would happen with what is This long, COVID thing, but we’re starting to get more and more information about long COVID, dare I say more and more comforting information, in some respects about long COVID. Because obviously, the more you know about something, I think the more you’re able to address your fears if that if that makes sense. You know, if You’re afraid of bats like Batman, the more you learn about bats, the better the better. You feel, I think.
Zoe Rothblatt 14:37
I totally agree that that was also one of my biggest fears, is long COVID especially as someone that lives with chronic illness. It’s like, yeah, you sit there like begging please don’t give me another thing to deal with.
Steven Newmark 14:51
Right, right. I mean, I think the number one thing is almost universally it’s accepted that long COVID is not a chronic illness. It’s not a lifetime thing. It doesn’t I’m not trying to minimize it by any means. But that, for me was one of my biggest fears. Who needs another chronic illness tapped on top of this? Again, not good, but not as, you know, scary, I think, as some of us had thought. And it also seems to be following pattern that other coronaviruses when it comes to the long tail of the illness.
Zoe Rothblatt 15:21
Yeah, I think it’s exactly what you said, it’s not a chronic illness, it’s these lingering symptoms, right. And it’s a little hard because there’s no clear definition or consensus generally about what long COVID is, you know, what are the symptoms included under that they really vary from like a cough to GI symptoms, it really varies. And I think that, you know, a lot of researchers are just trying to piece together all of these diverse studies and symptoms to try and figure it out.
Steven Newmark 15:52
Yeah, absolutely. I still think the worst part of long COVID and I didn’t have long COVID, as far as I know, is the profound stigmatization of people who disbelieve that long COVID is actually a thing. That’s quite, you know, unfortunate, because it is a thing and folks who contract COVID end up getting long COVID end up suffering for a lot longer than your traditional COVID suffer, if you will.
Zoe Rothblatt 16:15
And I actually saw that there could eventually be a blood test to help predict who will get long COVID for you know, these persistent symptoms by looking at certain blood protein levels. Researchers are starting to look at it. And, of course, you know, it may be different for people in our community who have different bloodwork. But yeah, that would be really cool.
Steven Newmark 16:37
Yeah, that would that is interesting. It’s always good to know your risk levels when it comes to certain things. So that’s, that’s good to know. I also actually read a study saying that the risk of long COVID drops after a second infections compared to first infections. So that’s kind of good. It’s good news. And bad news is good news that it drops. In fact, it drops apparently, very precipitously. But the bad news is the risk is not zero.
Zoe Rothblatt 16:59
Well, you know, let’s end on, I guess, a positive note. Yeah, a few things that we’ve learned in these three years, I would say number one, mRNA vaccines are safe and effective, it’s easy to forget that now, like, you know, we have this new technology. And it’s pretty remarkable that we have that.
Steven Newmark 17:16
That’s fantastic. And another thing that we learned, if we didn’t know before we now you know, there are enough studies to show that masks actually work. So if you’re concerned if you’re going out there, wear a mask, or an n95 Mask where it KN94 mask, and they work.
Zoe Rothblatt 17:32
On that note, indoor air quality matters. Better ventilation, we saw, reduces transmission. I had never, you know, given much thought to that before. But yeah, these are all just like really important public health learnings for the future.
Steven Newmark 17:47
Yeah, no, absolutely. I would also say that tracking viral evolution is key. Countries and health agencies around the world have now established genomic surveillance to track novel concerning variants. So that’s great that the world is working together to track these things.
Zoe Rothblatt 18:03
Agreed. I think that’s a great note to end on with these positives. Steven, would you learn today?
Steven Newmark 18:08
Well, I learned from you that there’s potential blood tests to determine if you might be at higher risk for long COVID. I didn’t know that. Going into today’s recording. So thanks, Zoe.
Zoe Rothblatt 18:17
Yeah, for sure. It’s great learning. I learned from you, you know, top of the episode talking about the Cochrane Review and just you know, re establishing the learnings there and the misleading could be and why.
Steven Newmark 18:31
Great. Well, we hope that you learned something, too. And before we go, we want to give a shout out to Healthcare Matters, where our colleagues, Conner and Robert, do a deep dive on health policy. Check it out, along with all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 18:47
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, please give us a rating and write a review on Apple Podcasts. And definitely check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 19:02
I’m Steven Newmark. We’ll see you next time.
Narrator 19:05
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep22- A Closer Look at COVID Data and Vaccines
This week, our hosts break down discussions from the recent meeting held by the Advisory Committee on Immunization Practices (ACIP), a group of advisors to the U.S. Centers for Disease Control and Prevention (CDC). The updates include reassuring data on the safety of vaccines, who is getting hospitalized for COVID, and the role of vaccine boosters now and in the future.
“The goal is not to stop COVID entirely; it’s about the prevention of severe disease. To me, this is similar to the flu, nobody in public health rationally thinks that we can ever stop flu via vaccination in a given year,” says Steven Newmark, Director of Policy at GHLF. “But public health officials recommend vaccinations to help slow the spread to those most vulnerable and to protect against severe disease.”
S5, Ep22- A Closer Look at COVID Data and Vaccines
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:06
The goal is not to stop COVID entirely, it’s about the prevention of severe disease. To me, this is similar to the flu, nobody in public health rationally thinks that we can ever stop flu via vaccination in a given year. But public health officials recommend vaccinations to help slow the spread to those most vulnerable and to protect against severe disease. 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 00:41
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven 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 00:52
And to help you make informed decisions, today we’re going to talk about the recent Advisory Committee on Immunization Practices. They had a meeting, and we’ll talk about what it means for our community. So let’s dive into that.
Steven Newmark 01:06
Yeah, the committee recently met and this is the CDCs external advisory group of expert scientists, and they met to discuss all vaccines. This was part of their regularly scheduled meeting, you know, in other words, these things happen with or without a pandemic. And on this particular morning, they focused on COVID-19 vaccines.
Zoe Rothblatt 01:23
So this discussion was really highly anticipated because it followed the meeting where the FDA discussed the future of boosters in the US for COVID. We talked about that recently, on an episode of The Health Advocates, we had a lot of unanswered questions, you know, will it be a bi-vaillant dose from now on instead of the primary series? Will it be an annual shot? We’re kind of left with suggestions, but up in the air.
Steven Newmark 01:47
Yeah, so some top lines from the meeting. First of all, the top top top top top top top line is that vaccines continued to be safe. There was more reassuring data presented on the safety of COVID-19 vaccines.
Zoe Rothblatt 02:00
I wish our listeners could see that I was smiling, as you said that. Always good to know that vaccines continue to be safe, especially for our community where there’s like a lot of considerations with just you know, your condition, your meds, so it’s great to hear this news.
Steven Newmark 02:15
The second what I think is a big top line is that the vast majority of COVID hospitalizations are actually for COVID-19. What I mean by that a lot of detractors say that the number of COVID hospitalizations is misleading, because it includes people who go to the hospital for some other ailment and quote unquote, happen to have COVID. But the data presented last week actually says the opposite.
Zoe Rothblatt 02:38
Okay. So you know, what does that mean exactly?
Steven Newmark 02:41
The data on hospitalizations for and with. So for means the primary reason that you entered the hospital with is a coincidental coinciding ailment that you may present with when you’re at the hospital. The vast majority of COVID-19 hospitalizations between 80 and 90% for those under age five years, and over 50 are for COVID itself. And this has not changed over time. So yes, COVID-19 is still a problem.
Zoe Rothblatt 03:06
So that’s just basically saying, you know, if I’m sick and going to the hospital for COVID, that’s more likely the case, then I have Crohn’s flare, and I happen to also test positive for COVID while I’m in the hospital. We’re saying that first case COVID’s still problem people are going into the hospital for COVID.
Steven Newmark 03:23
Right, exactly, exactly. So another big deal that jumped out at me is that for adults, 96% had at least one underlying condition. So that’s not surprising. It’s something you know, that those of us in the immunocompromised community are well aware of. Amongst kids, however, 49% had no underlying condition. So essentially, it was 50/50. That’s a really big deal. Half of the children presenting at hospitals with COVID had no underlying health conditions.
Zoe Rothblatt 03:53
And that surprised me that, you know, half of these cases of COVID hospitalizations amongst kids are with no underlying health condition. So that seems like a really big deal to me, given that we’ve said in the past that it hasn’t affected kids so strongly.
Steven Newmark 04:07
Absolutely. So something just to be aware of, to say the least. And you know, another reason why why children should get vaccinated, frankly, regardless of whether you have an underlying condition.
Zoe Rothblatt 04:16
So, you know, when we talk about adolescents, you know, the risk benefit there. I think that they talked about that there’s a lot of chatter around whether you know, the benefits of the COVID vaccines still outweigh the risks for adolescents. You know, where myocarditis is rare but still real risk. So the CDC ran a risk benefit analysis on the bi-vaillant boosters. And what they found is that, you know, when they looked at for 1 million bi-vaillant vaccines given to ages 12 to 17 years old, they found that the benefits did outweigh the risks. So that’s really good to know. This is looking at bi-vaillant boosters, so it’s more recent data, which is always nice to hear.
Steven Newmark 04:57
Yeah, and we should say that the benefits described by the committee were limited to severe disease. Other benefits that they didn’t even discuss include preventing infections, generally, long COVID, days of work that were missed, reduced transmission, etc. So there are even more benefits harder to calculate, if you will.
Zoe Rothblatt 05:15
So we’re looking at this data on protection by age. Where does that lead us for older adults?
Steven Newmark 05:22
Well, older adults were vaccinated in September are coming up on six months on post vaccine. So do they need another vaccine? Or do they wait until the fall like everyone else. It’s clear that protection does wane. You know, it’s unclear as to where we’re going in terms of trying to increase the dosage or decrease, if you will, the time between dosages.
Zoe Rothblatt 05:41
Right. And it’s also an interesting time right now, because we’re headed into spring in the northern hemisphere, which is typically when you know, COVID cases start to go down. So I guess like our immunity would be waning, as the cases are waiting too. So it’s just interesting to see about how, you know, we’ll move forward, whether it’s an annual dose or whatever, but I did see in the meeting that, you know, the CDC clarified the ultimate goal of vaccines is prevention of severe disease, which that’s what they’re doing.
Steven Newmark 06:13
And I think this is an important point that sometimes gets lost. The goal is not to stop COVID entirely, it’s about the prevention of severe disease. To me, this is similar to the flu, nobody in public health rationally thinks that we can ever stop flu via vaccination in a given year. But public health officials recommend vaccinations to help slow the spread to those most vulnerable and to protect against severe disease
Zoe Rothblatt 06:39
Because of this concept that you know, we’re preventing severe disease and it is working in that sense, the committee decided there was insufficient evidence right now to suggest that older adults and immunocompromised need another bi-valiant booster at this time. They did say that could change in the future based on a few things. So the first hospitalization rates among those who got the bi-valiant booster start to increase if we see that, that may be pointing to a reason to get another shot. Other signals of waning vaccine effectiveness of bi-vaillant vaccines and COVID significantly mutates of course, that would be you know, a reason to take a look at when the next dose should be. But as for right now, it seems like the recommendations are that that everyone will be eligible for one shot per year.
Steven Newmark 07:27
Yep. But as we’ve learned, we have to be flexible as this could change. And we you know, we’ll see where we go next.
Zoe Rothblatt 07:32
That’s been the motto the whole pandemic, right, like we know our protective things, you know, handwashing, masking, distancing vaccines, but ultimately, it’s like, we’ll see where we go next. With each season brings a new wave of either relief or concerns. You know, we got relief this year when it stayed in the Omicron lineage and we didn’t get a new original variant. But then again, we got these ones in lineage that that were more transmissible. So it really is about watching and waiting and trusting in the experts that they will lead us in the right direction.
Steven Newmark 08:06
Absolutely. So stay tuned. And it was a good meeting, we learned some interesting stuff. And we’ll keep our ears to the ground again to see what else comes of it.
Zoe Rothblatt 08:15
Well, Steven, that brings us to the close of our show. But did you learn today from the committee?
Steven Newmark 08:20
Well, I learned a lot. I think the most important thing I learned from the committee, for me, is that the vast majority of COVID hospitalizations are for COVID. I was surprised I actually bought into the idea that a lot of the hospitalization numbers in dealing with COVID were for folks who actually presented with something else and turned out that they had COVID.
Zoe Rothblatt 08:39
And for me, it was a good reminder that the ultimate goal of vaccines is to stop severe disease. I think like I say that a lot. But it’s it’s tough to internalize it because we do get caught up in you know, testing positive and what does that mean, but it really is helpful to know that that in this committee, they’re determining that the vaccines are doing their job at stopping severe disease.
Steven Newmark 09:01
Well, we hope that you learn something too. And before we go, we’d like to shout out to Healthcare Matters hosted by our colleagues, Conner and Robert where they do a deep dive on health policy. Check it out, along with all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 09:16
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 like this episode, please give us a rating and write a review on Apple Podcasts and definitely check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 09:31
I’m Steven Newmark. We’ll see you next time.
Narrator 09:34
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 21- Exploring Meta Analysis of COVID Masking Study
This week the hosts cover the latest news on the origins of the COVID-19 pandemic, the newly authorized rapid at-home test for flu and COVID, and new RSV vaccines on the horizon. The hosts dive deep into a new Cochrane review about the effectiveness of masks against flu and COVID, and how it compares to other studies on how masks work.
“Based on the studies that are out there in controlled environments when individuals are masked properly, it does help stop the spread and it certainly protects those who are wearing the masks,” says Steven Newmark, Director of Policy at GHLF.
S5, Ep. 21- Exploring Meta Analysis of COVID Masking Study
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:06
Based on the studies that are out there in controlled environments when individuals are masked properly, it does help stop the spread and it certainly protects those who are wearing the masks. 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, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:37
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. Today, we will talk about a new study about the effectiveness of masks and break down its conclusion and what it means for our community.
Zoe Rothblatt 00:49
I’m really excited to dive into that topic with you, Steven. First, we do have a few COVID infectious disease related news updates. The first on our list is this lab leak theory.
Steven Newmark 01:00
Yeah, I don’t think we can really call it a theory anymore. Or maybe we still can. But several US agencies, including the Department of Energy and the FBI, now say that Coronavirus pandemic was likely caused by a leak at a laboratory in Wuhan.
Zoe Rothblatt 01:17
You know, this adds to previous intelligence that in 2021, a few other intelligence agencies said that, you know, with low confidence, they thought the virus emerged through natural transmission, you know, which would be whether it’s through the market or just jumping around, but they had low confidence. And now it seems like we’re getting new information that it did come out of a lab. We weren’t told what the new information is. It’s just that now that’s leaning towards that this is the true origin, which you know, what does this mean for the future is the big question, right?
Steven Newmark 01:50
First thing we should say is we’ll probably never know definitively where this started, because it’s been three years, and China is not allowing any foreign agencies to actually go and inspect and to try and learn the truth of the origins. But the closer we come to learning where the virus originated, the better we can do in the future to help contain viruses generally speaking.
Zoe Rothblatt 02:12
Exactly and be proactive about how to protect ourselves, especially for our community, who it’s so important. I mean, it’s important for everyone to stay safe, but especially for our community, it’s helpful to be proactive about health.
Steven Newmark 02:24
Absolutely, absolutely. So we continue to learn more, we’ve spoken about it on this podcast, the idea that it came from a laboratory that happens to be situated in Wuhan, I don’t think should come as a total shock to most folks, even despite the transience of China in allowing inspectors in. Hopefully, we will continue to learn more about the origins.
Zoe Rothblatt 02:43
Next up on our news lists we have the FDA authorized the first over the counter at home test for flu and COVID. This is really exciting.
Steven Newmark 02:52
Yeah, that is great. It’s funny, that’s one of the questions, we would scratch our head about, like, hey, why don’t we just have one test for both? And as best as I can recall, I don’t. I’ve never even I don’t recall ever knowing about an at home test for flu at all. Unless I’m wrong.
Zoe Rothblatt 03:07
I don’t think so.
Steven Newmark 03:08
So that’s fantastic. So if you’re feeling ill, you can now take a test and you’ll at least be able to recognize whether you have flu or COVID. And both of those are, of course, illnesses that you want to treat as quickly as possible. And for flu, we talked about it a lot less than COVID. But if you can get yourself on medications early during the course of your illness, it certainly bodes well for outcomes.
Zoe Rothblatt 03:28
And we’ll have to see how this is covered by insurance. I couldn’t find any information yet, because it’s so new. We’ll keep everyone updated as we learn that.
Steven Newmark 03:37
What gets even crazier, the company that produced the actual test filed for bankruptcy. So, so so it’s we’re not exactly, we don’t exactly have the tests ready to go. But certainly we should knock on wood by next flu season.
Zoe Rothblatt 03:52
Yeah, I was about to say hopefully for next flu season, we can be using these.
Steven Newmark 03:57
Yeah, that will be great. And in terms of obtaining them through insurance or whatnot, TBD.
Zoe Rothblatt 04:02
And lastly, big news this week in a narrow vote that FDA advisors recommended that the agency approves the country’s first RSV vaccine, and this would be for people ages 60 years old and up.
Steven Newmark 04:15
That’s more good news that there’s a vaccine out there that will certainly be out into the public. The vote was close, as you said it was seven to four with one abstention. But you know, we will soon have a single dose shot that has been shown to reduce the risk of illness from RSV by 86%.
Zoe Rothblatt 04:31
That sounds pretty great to me. 86%, I’ll take it except obviously I’m not 60 and up, we’ll see what happens for immunocompromised. I bet that that’ll be you know, the next group that they focus on. But as we’ve seen these vaccines get rolled out with certain groups in mind first with how the studies go.
Steven Newmark 04:48
So we’ll see how that goes. The Advisory Committee has also made about another RSV vaccine for older adults, more vaccines that are out there to help the better and certainly the more likely that some of these might get approval down the road or in short order for the immunocompromised population as well.
Zoe Rothblatt 05:04
Now, if only we can combine all these into one vaccine not only go to the pharmacy, but it’s better to make some trips than get sick.
Steven Newmark 05:13
Better to live today than 100 years ago. So be grateful for what we have.
Zoe Rothblatt 05:17
That is true. I am grateful that aside from vaccines, biologics exists now and keep me healthy and our community healthy. There’s a lot of great advancements. Let’s dive into our big story. Do masks work? There’s a new study that seems to show that masks don’t help stop the spread of COVID. This was like super alarming when I read it. You know, I was just really surprised when I learned about this. And I was thinking has everything we’ve been told and learned about this whole time getting unraveled now?
Steven Newmark 05:48
I wouldn’t say it’s getting unraveled. But there’s certainly been a study that came out called the Cochrane Study and it’s a very reputable source. In fact, for medical questions, they are a major source of high quality meta analysis. They’re a UK based nonprofit that publishes long and comprehensive analysis of current evidence on medical and therapeutic interventions. Generally speaking, to boil it down, they kind of aggregate existing studies to produce reviews that are frequently called the gold standard. This study concluded and I’m quoting, “wearing masks in the community probably makes little or no difference to the outcome of laboratory confirmed influenza/SARS-CoV-2 compared to not wearing masks,” that was their official statement.
Zoe Rothblatt 06:32
Okay, lots of confusion. When I hear that, yes, it seems to undo everything we’ve learned. But what’s important is that this was a meta analysis, right? “ooked at a lot of studies.
Steven Newmark 06:44
78 to be exact.
Zoe Rothblatt 06:45
So let’s dive into that. What did they actually look at? And how did they get to this conclusion?
Steven Newmark 06:51
Okay, so that’s a good question. So first of all, they looked at 78 studies, only six were actually conducted during the COVID 19 pandemic.
Zoe Rothblatt 06:59
Wait, hang on, only 6 of the 78 were during COVID. But the conclusion is about masks makes little to no difference for COVID?
Steven Newmark 07:10
For COVID and flu, correct, Okay. In fact, the majority of the studies looked at flu transmission under normal conditions, and many of them are about other interventions like hand washing, not about mask wearing. Only two of the studies were specifically about COVID and masking in particular. And furthermore, neither of those two studies look directly at whether people actually wear masks. But instead, whether people were encouraged or told to wear masks by the researchers. If telling people to wear masks doesn’t lead to reduce infections, it could of course be that masks don’t work. Or it could just be that people don’t wear the masks when they’re told to or they’re just not wearing them properly.
Zoe Rothblatt 07:48
Which we’ve learned about that in the pandemic. But you know, what I’m hearing here is that that conclusion, when you dive a little bit deeper, it’s not what it seems, because very few studies were about COVID.
Steven Newmark 08:01
Right.
Zoe Rothblatt 08:02
You know, somewhere about the flu. So maybe we can make a link there but unclear about COVID. And, you know, very, very few of them, he said two only looked at masking and it wasn’t even a strong study about you know, do masks work, it was more about feelings and attitudes towards mask if I’m getting this right.
Steven Newmark 08:21
Right, exactly. So people want to know a very simple answer to what should be a simple question does wearing a mask work? But that’s a very loaded question. What does work mean? What kind of a mask are you talking about? During what period of transmission? You know, is the individual shedding at a high rate at that particular moment? What is the disease? Are we talking about influenza? Are we talking about COVID? Are we talking about a different virus altogether? And what social context? How close are you? Are you within six feet of another individual, three feet of another individual? What’s the age factor situation? Are you indoors? Are you outdoors? So there are so many questions. You know, I would just sort of come back to this, do you masks work against COVID 19? I would start almost by asking a physics question. Can a masks physically stop droplets and aerosols from coming in and going out? In other words, calling out when you are sick and shedding and can spread a virus and coming in to protect yourself when wearing it?
Zoe Rothblatt 09:22
Okay. Yes, important question. And it’s a little confusing, right? Because we’ve heard a lot over the course of the pandemic. If we go way back to March 2020, we were told not to wear masks, in part because there was a shortage of PPE and we needed to save it for our essential workers. Then, you know, it was like any cloth mask could be good. Later, we learned that that might not be as effective and we really need an N95, KN95, you know, a tighter fitting stronger mask. So where are we today? How do we answer that physics questions, Steven you know, is that true do masks stop these aerosols from coming in?
Steven Newmark 09:59
For the specific experiments, scientists place test subjects in a very tightly controlled environments with equipment that precisely measures the number of particles that were released when wearing a mask or inhaled while wearing different masks. And they inhale them while doing different things while whispering while coughing while laughing to get different variations. And multiple studies have shown that masks help protect the person wearing the mask against COVID-19. In other words, they reduced the number of particles inhaled by someone. Also, the masks reduced the number of particles emitted by a person. One study, in fact found that surgical masks and KN95 masks reduce the outward particle emissions by 90%, or at least 75% in some cases. So when worn properly, masks do prevent emission from individuals that are shedding. And they do prevent inhalation for individuals that are trying to protect themselves.
Zoe Rothblatt 10:56
So it seems like from this, I’m gathering that masks work on an individual level, you know, to help just person to person oftentimes we talk a lot about the population level and public health in that sense. But it seems like this study is proving that even if you as an individual wearing a mask, and especially if the other individual you’re talking to is wearing a mask, it really does reduce what you inhale and what you would emit.
Steven Newmark 11:20
For the most part. And I say for the most part, because, you know, these are studies that are done in tightly controlled environments, which are very different from the real world. In the real world, too many people, of course, don’t wear masks at all. As an example, if you’re in a crowded subway car were very few people are masked and a bunch of them have a virus and are shedding and are coughing, your protection may be limited. Those who do wear masks don’t always wear the proper masks or the highest level of protection, the N95 masks, KN95 masks. Even when wearing masks, folks don’t always wear them properly to get the proper seal. So within the real world, the conditions are quite different. But yes, based on the studies that are out there, in controlled environments, when individuals are masked, properly, it does help stop the spread. And it certainly protects those who are wearing the masks.
Zoe Rothblatt 12:12
So you know, linking this back to that study we were talking about at the top that had a different conclusion, I wish they would have looked at this and seen how this would have altered their results. If they included this study, you always have to look deeper at what’s going on. Because this is a study that’s actually looking at the effectiveness of masks and how aerosols and droplets transmit whereas that meta analysis didn’t look at that.
Steven Newmark 12:38
Correct. Correct. Correct. Because they were looking also don’t forget, they were looking mostly at non COVID-19 viruses, they were looking particularly influenza, which is different. And they were looking at a lot of studies that took place in the real world where it’s hard to get a gauge on on how folks were wearing the masks, and not to mention what kind of masks they were wearing.
Zoe Rothblatt 12:57
I feel like we still have some unanswered questions.
Steven Newmark 12:59
Some?
Zoe Rothblatt 13:02
Well, I mean, we’re going almost three years into the pandemic, I think we’re hitting that mark, but it’s just like, you know, do masks work on an individual level? Do they work on a population level? How do we know what the right mask is? What happens if you don’t have that right fit that you were talking about and there’s leakage? Which is a lot of these questions come to mind. And does it lead to less severe disease, if you are wearing a mask?
Steven Newmark 13:27
I’m a big proponent without any scientific evidence of the last one, the idea that, you know, if nothing else, my hope in wearing a mask is that I will inhale less of the virus and have a smaller viral load, which would lead to either if I were to get infected, either an asymptomatic infection or less severity of an infection. So it’s sort of like, I don’t know, like a strainer? I don’t know what that I don’t know how to describe it.
Zoe Rothblatt 13:53
Like explaining the stuff at the top of your soup.
Steven Newmark 13:57
Right, right. But we don’t have anything definitive that says, you know, I could be, you know, what, that what I’m doing is actually protecting for that particular instance. You know, I think ultimately, the main problem with taking too much out of the Cochrane Review is is is just that too many people in the real world were not masked properly. And it’s hard to extrapolate that because people were not masked properly, that the virus spread. And as a result, we shouldn’t encourage masking any means.
Zoe Rothblatt 14:30
Wait, can you explain that last part?
Steven Newmark 14:32
Well, you know, basically, you don’t want to I think it’s dangerous to say the top line takeaway is that masks don’t work because study after study shows that they do help to decrease the spread when worn properly. They do help to protect the individual on an individual level when worn properly. And if you care about others, if you’re not sick, you help to stop the spread if you have an asymptomatic infection, or if you actually know that you’re sick, you certainly should be matched up if you have to be outside. You know, I don’t think too much can be put into this. Look, the bottom line when you go to get surgery, do you see people wearing masks?
Zoe Rothblatt 15:09
Yeah, I would be terrified if they weren’t. Right.
Steven Newmark 15:12
Right. Exactly. And they would be to they’re doing it for themselves. Yes. So I think the beat goes on, we still have a lot more to learn. And we’re still living the world we’re living in where those of us who want to remain masked can do so you know, I’ll continue to wear mine in public settings, I’ll continue to wear my N95 masks or which, you know, which I feel does provide robust protection when needed.
Zoe Rothblatt 15:36
I think it’s tough because it’s like, where do we go from here? You just mentioned what you’ll keep doing. And I guess at this point is become an individual thing. What’s helpful for me is to think about what we talked at the top of the episode, you know, there’s now a new test for COVID and flu, you know, there might be a new vaccine for RSV coming. And I think it’s helpful that we have all these other supports outside of masking and they can all come together to help us feel safer.
Steven Newmark 16:05
Right. Absolutely. Absolutely. You know, we’d love to hear from you. I’m curious what our listeners think on this subject. We’ll keep reporting what we know until we hear otherwise, as the studies keep showing the efficacy and safety in wearing masks, we’ll continue encouraging folks to do that when in certain situations.
Zoe Rothblatt 16:22
Absolutely. And, you know, we know masking is so important to our community. We hear about it all the time on the internet and just through one on one conversation. So you know, do what you feel is comfortable for you. And like Steven said, we’ll we’ll keep everybody updated. Steven, that brings us to the close of our show. What’d you learn today?
Steven Newmark 16:40
I learned I guess in preparation for today, I learned about the at home over the counter test for flu and COVID. I’m excited when that’s actually available to purchase at my local Walgreens.
Zoe Rothblatt 16:52
Awesome. Yeah, me too. And I learned from you just how to do a deeper dive onto these studies that are meta analyses and like really, really dive in and see what they’re looking at and with a critical eye.
Steven Newmark 17:03
Well, we hope that you learned something too. And before we go, we want to give a shout out to Talking Head Pain, the podcast hosted by Joe Coe, featuring interviews with patients and leaders in the migraine community. Check it out along with all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 17:20
Well, everyone. Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, please give us a rating and write a review on Apple Podcasts and check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 17:34
I’m Steven Newmark. We’ll see you next time.
Narrator 17:36
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 20- Paying it Forward: The Journey to Becoming a Psoriatic Arthritis Advocate
This week, the hosts cover the latest news on the HELP Copays Act, new research findings on COVID reinfection hospitalizations, and tips related to Heart Health Month. The hosts are also joined by patient advocate Eddie Applegate, who shares his psoriatic arthritis journey.
“If I’m able to share my story with others in a way that can help them in a way that I didn’t have when I was first diagnosed … that would be just a great opportunity to pay it forward,” says Eddie.
S5, Ep 20- Paying it Forward: The Journey to Becoming a Psoriatic Arthritis Advocate
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Eddie Applegate 00:10
If I’m able to share my story with others in a way that can help them in a way that I didn’t have when I was first diagnosed, I thought that that would be just a great opportunity to pay it forward.
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 00:31
And I’m Zoe Rothblatt, Associate Director of Community Outreach 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.
Zoe Rothblatt 00:41
Today we have an interview with Eddie Applegate, we talked about Eddie’s psoriatic arthritis journey, advocating for yourself with your doctor, and also just how the chronic disease community helps support each other. It was a really great interviewer, I’m excited for you all to listen. First, we do have some news updates.
Steven Newmark 00:59
The HELP Copays Act was introduced this week in the house. The Help Ensure Lower Patient, or HELP, Copays Act to protect patients from harmful insurance and pharmacy benefit manager practices that raise out of pocket drug care costs.
Zoe Rothblatt 01:12
And this is a federal legislation that helps fill in the gaps that people are left behind. Because the state doesn’t cover everyone. Not every state has a law. And this is basically saying that if you use any money that you use towards a copay, whether it’s a copay card or you know a coupon, something from the manufacturer, or any of those will count towards your deductible. So you can help meet your deductible faster, and the insurance companies aren’t double dipping. So this is huge, because we know our community relies on regular medication.
Steven Newmark 01:46
Absolutely. This is legislation that we at GHLF have sought for many years. And I can’t emphasize enough the bipartisan nature of this legislation. I know, we hear a lot about dysfunction in Washington, particularly in Congress. But this is an area that has bipartisan support. And with that support, or hopefully it’ll get pushed through or hope it gets pushed into law.
Zoe Rothblatt 02:10
And similar to the discussions we’ve had with the Safe Step Act, this is something that’s been introduced in years past, which always is more hopeful as we gain more co sponsors on the act. And finally shout out to our colleague, JP Summers, Patient Advocate, Community Outreach Manager here at GHLF. Yes, she advocated and spoke at a Wisconsin Press Conference on the importance of this bill and how it helps patients. So thank you, JP, for all your work with the 50 State Network.
Eddie Applegate 02:38
Absolutely. Great job by JP.
Zoe Rothblatt 02:41
Our next news update is a little bit of research news. So we have some answers on protection from a previous COVID infection. This new study, it was a meta analysis, which means they analyzed 65 studies from 19 different countries, it was published in The Lancet. And what they found was that risk of hospitalization from COVID among people who were previously affected is 89 to 90% lower for at least 10 months post infection.
Steven Newmark 03:10
Yeah, excellent news for pretty much everyone. It’s great news if you have been infected, of course, but it’s also good news if you’ve not been infected, because it means that there are folks walking around who have been infected who have greater protections for themselves, which will endure to greater protections for the community as a whole.
Zoe Rothblatt 03:28
Exactly. And the study did find that protection from past infection from the earlier variants was high, but it was substantially lower for like the Omicron BA.1 lineage. And you know, obviously the study authors recommend that vaccination is still really important and the safest way to get protection, especially because vaccines also are important for you know, older adults in our community with underlying illness who really rely for those around them to have protection. You know, a vaccine is guaranteed protection versus an infection we really don’t know so much.
Steven Newmark 04:02
We also want to mention, this is our last recording in the month of February. And as we end Heart Health Month, there is a few tips that we wanted to share for you and your loved ones.
Zoe Rothblatt 04:11
Let’s hear it. It’s really interesting how much heart health overlaps with chronic illness like inflammatory arthritis, things like that. There’s such an overlap among co conditions, it’s hard to remember to consider it all. So what are the tips, Steven?
Steven Newmark 04:25
Well, some tips are as with anything else, always start with a good team. Start with your primary care doctor and add a cardiologist to the mix when it’s appropriate to talk about your heart health. You know, when you have your team assembled, make sure that you get proper heart tests to get an accurate picture of your cardiovascular health. Obviously, it’s important to make healthy food choices. The Mediterranean Diet has been found to lower the risk of heart attack, stroke, and heart failure. And stay active. Get moving, exercise can improve vascular function and reduce the risk of cardiovascular disease.
Zoe Rothblatt 04:57
Great. I mean, it’s more of the same stuff that we hear for other chronic diseases, which is good news because I might be already be doing some of it. But just adding a little bit more on shouldn’t be too much of a burden. So like I mentioned, I spoke with Eddie Applegate, we had a really great conversation about ways to just speak up for yourself along your journey. You’re whether it’s the beginning of your journey, or you’ve been living with a condition for a while, it’s always important to connect with others and get these tips. So yeah, let’s have a listen to Eddie. Good morning, Eddie. And welcome to The Health Advocates. It’s so great to have you here today.
Eddie Applegate 05:37
Good to be here this morning, Zoe.
Zoe Rothblatt 05:39
So why don’t you begin by introducing yourself. Tell our listeners a little bit about you, your diagnosis, and where you’re at today.
Eddie Applegate 05:46
My name is Eddie Applegate. I am originally from the great state of Alabama. But I’ve been living in the Atlanta, Georgia area for the past 10 years. I work with making sure commercials run correctly. So I’m I’m sorry, I guess since I’m the one that I’m responsible for some commercials and some programs. So like I said, my apologies on that one. I was diagnosed with psoriatic arthritis in it’s been about 20 years now since I was first diagnosed. And I like to say that my diagnosis story is much different than other people’s because I was actually diagnosed early the first time and by an urgent care doctor, which whenever I tell people that they’re like, “You’re kidding.” I was like, No.
Zoe Rothblatt 06:29
Yeah, my jaw dropped when I found that out.
Eddie Applegate 06:32
I mean, it’s it’s I hate that it is such an anomaly in the lore of diagnoses, but I had been having issues with pain and with stiffness. Getting in and out of a car was tough and painful. And so I finally asked my mother at one point in time, do you think that I have arthritis? And she said, I don’t know, you may but you would need to get a referral first. So that’s why I went to an urgent care just to get a referral to a rheumatologist. But I think I had the one urgent care doctor who had heard of psoriatic arthritis. I had never even heard of psoriatic arthritis, but with the symptoms on my chart, and then he looked at me and he looked at my fingernails, which had some pitting in them, and he looked at my skin, which had psoriasis on them. He said, “I know exactly what you have. You have psoriatic arthritis,” and I was able to get a referral to a rheumatologist very quickly because it was a new rheumatologist at the practice. So I didn’t even have to wait a long time, like others do to see the rheumatologist. I think within a month, I was seeing a rheumatologist and that that led on my journey of 20 plus years. Right now I am at a period of lower disease activity. So I’m very thankful for that. Thanks to good medications. I’m very happy with that. That’s my story in a in a quick little nutshell.
Zoe Rothblatt 07:59
I’m so glad to hear that you’re living with low disease activity today. That is such a win. I wanted to ask you got a quick diagnosis. What happened next? When did you start, you know, advocating and sharing your story and being open about your psoriatic arthritis?
Eddie Applegate 08:16
That was a little further down the road. I tried some medications that didn’t work, I’d even gone off of medication at some point in time because my insurance had changed or lost insurance. It’s amazing how having the right job and the right insurance affects our health care. That’s, that’s another story for another day. But that’s it’s very important. But I’d finally been in a good place medically. And I saw something with the Arthritis Foundation actually like, oh, the yearly walk, I was like, Well, you know what, you know, several years ago, would not been able to do this walk. So why not? Why not try it? And so I did a little fundraising for that. And after a few times, somebody that worked there said, “I keep noticing your name. It’s great to meet you know, if I ever have anything, I’ll let you know.” And that led to being a part of an ACR symposium one day on psoriatic arthritis from as the as the patient, there were a lot of clinicians, and then they had some patients sprinkled in there as well to get the patient point of view. And that really is what what started it. And then I met Ben Nowell from GHLF. And he’s like, “Hey, we’ve got something called Patient Governors, were still looking for some and think that you’d be good. So if you’d like to do that?” Sure. Why not? You know, I thought things are being put in my path for a reason these opportunities have been put on my path for a reason why not get a chance to speak as a patient from my point of view, because you know, a doctor can speak 24/7 but it’s different when someone who actually has the disease tells their experience. That’s much more, that hits much closer to home because when I started with psoriatic arthritis, 2003, there wasn’t a whole lot on the internet about psoriatic arthritis. There, there wasn’t social media like there is now 20 years ago, which makes me feel way older than it should. But it was that way there really wasn’t anything to it. There may have been some message boards are some people commenting on things, but there’s not what we have now. So if I’m able to share my story with others in a way that can help them in a way that I didn’t have, when I was first diagnosed, I thought that that would be just a great opportunity to pay it forward.
Zoe Rothblatt 10:33
I love that, I totally agree. It makes such a difference to hear things from other patients. As I think you know, I live with spondyloarthritis and Crohn’s disease and just opening up about my disease, I’ve had a similar experience to you where you meet people along the way that helped you and you in turn can say something that helps someone else recognize symptoms. And it just it makes such a difference having that in between the doctor’s visits, like you mentioned, you know, you go to the doctor, but what happens in between and you have this sense of community advocating with you in between, which is amazing.
Eddie Applegate 11:07
Absolutely. And I have made wonderful friends through my arthritis journey that I talk with, you know, most every day about arthritis things and about non arthritis things. But it’s good to have somebody because not everyone understands like, oh, well, the doctor told me this, or my medication is making me feel like this. The average person is not going to know what that means. So it’s good to have somebody that does know what it means. And also I found out a few friends of mine, that whenever I would post about stuff, they’ve messaged me privately and said, “Thank you for speaking about this, you know, I have psoriatic arthritis. I don’t feel comfortable speaking like you do. But I’m glad that you are speaking out and telling your story. It does mean a lot.” I was like, Wow, thank you.
Zoe Rothblatt 11:50
I think that’s so key everyone, advocates in their own way. And even just like the person that doesn’t want to share, but is reading your story that also is a form of advocacy, because they’re getting the knowledge and really trying to take control of their care. So that’s amazing. Eddie, you joined The Psoriatic Arthritis Club, another podcasts under our umbrella. And I really wanted to bring you on here to do a little crossover and talk about some of the things you mentioned on there. I was listening to your episode, and you said, “Because if you don’t say something than nothing’s going to change. If a change is needed, if you feel a change is needed, and you don’t say anything, the doctor is not going to know.” That was a really powerful quote to me and just like really highlighted to me how much you’ve advocated for yourself on your journey. Even with a quick diagnosis, it’s still may be a long road living with a chronic disease. Can you talk to us about a time you remember speaking up and a change that you felt you needed?
Eddie Applegate 12:50
Absolutely. I think that the medication that I’m on now is because I’ve advocated for myself. You can’t be shy whenever you go to the doctor’s office and go, “Oh, no, I’m fine. I’m Okay,” if you’re actually in pain, because if you say, oh, no, I’m fine. I’m not in pain. That’s what the doctors gonna believe. And if you are in pain, but you say you’re not in pain, the doctor is not, I think I’ve said before to people like, Well, the doctor is not a mind reader, you have to tell the doctor, exactly, or the nurse practitioner, or the physician’s assistant, whoever the medical professional is that you’re seeing, you have to tell them if something is wrong. I know that I kept mentioning to my rheumatologist, “Yeah, I’m having some issues in my ankle and my knee.” He said, “Well, maybe it’s time for a medication change.” He was always great to listen to me, if I was having some issues, there would be times when he would bring out his little ultrasound machine. And you know, run it over my hand, run it over my knee, just to make sure that when they are looking, see, but if you don’t say anything, nothing changed. And that goes for any situation in life, not not just on a medical situation. But any situation in life. If you don’t say anything, nothing’s going to change because people are going to think that everything is good the way that it is. So you have to you have to say something, if you feel that the medication isn’t working, if you have a new symptom, if there are some side effects to the medication, you really need to say something or else you’re going to stay where you are because the doctor will think, hey, where you are is fine. So it’s important that you do speak up so that they know, you don’t want them to say, “Oh, well, you never said that you were feeling bad. Oh, you never said that this was an issue.” Say it, put it out there. And if they don’t listen, make them listen, but at least you know that you’ve said something.
Zoe Rothblatt 14:33
So what advice do you have for others that are maybe a little bit timid to speak up? How can someone get to the place that you’ve got to where you are recognizing symptoms and saying it out loud?
Eddie Applegate 14:45
I think that if you are a little timid and a little hesitant to some people might think oh, you know, well, I don’t want to contradict what the what the doctor is saying I don’t want to, you know, seem like a bother. If saying something is a problem. Write it down. I’m a big advocate of if you know that there’s some issues going in, write down those issues before you get there. Even if you just want to hand it to the nurse, to the nurse practitioner, to the PA, to the doctor, it may be easier than just saying it out loud. This is how I’m feeling today. On the chart, I know that every time I go, I always have to mark on the chart how I’m feeling. Be honest on there. So if you don’t want to say anything, at least be honest on on the chart, that is super helpful, because they’re looking at that over time. Like, “Oh, you were a four yesterday, you were four you know, three months ago or six months ago, but you’re a six today. All right, what’s what’s going on that we have this, this change?” So honesty is the is the number one thing whether that’s honesty in speech or honesty in writing it down, if that makes you feel a little less aggressive or whatever, but just write it down if saying is too much.
Zoe Rothblatt 15:56
I think that’s great advice, especially because sometimes when you get to the appointment, you go blank and forget what you want to say. So just having it there as that little reminder and push to say it is really helpful.
Eddie Applegate 16:08
Absolutely.
Zoe Rothblatt 16:09
Well, Eddie, thank you so much for joining us today. I really appreciate your time and you sharing your story. You know, you mentioned 20 plus years, I feel like we’re just getting started still. Thank you.
Eddie Applegate 16:21
You are very welcome. It’s I’m very glad to be here. And I’m having to keep all this advice fresh in my mind, because I just switched rheumatologist because my rheumatologist of 10 years, just left his practice. And so I’ve started with I’ve started with the new doctor as of this week. And so I had to remember that for myself. So when I knew that this was coming, I was like, Well, this is kind of a good, this is a good way to put my own words into practice. And hopefully I’m listening to myself and, and, and following my own advice so that I can speak up. And that’s what I did. You know, I said, this is how I’m feeling. And I think that he could tell that I had a good knowledge of what was going on. So I was able to be involved in my own treatment plan. And I think that that that really impressed him. But that’s another reason to speak up because you want to be informed you want to know what they’re doing, you are the most vital and integral part of your own treatment plan. So being informed and speaking up is very important because of that.
Zoe Rothblatt 17:20
Well, before we go actually one more question you just mentioned you switch rheumatologist and I’ve been hearing a lot about that in our community, people’s rheumatologist retiring or, you know, there’s not one in their area. How did you go about finding a new one?
Eddie Applegate 17:35
Well, this one I didn’t have much of a choice with because my doctor sold his practice to another group. And they said, “Okay, yes, you can still come to to this location. There’ll be doctors from that practice that are here a few times a week. And so you’ll see them.” So at least I didn’t have to go out and search. But once I found out who it was with, you better believe I went to, to that practices website. Let’s find this doctor. Let’s see what his credentials are. Let’s see what he is, is doing. But the important thing is research. Unfortunately, the first research has to be do they take my insurance? You are running into your insurance website. I have done that on other specialists. Oh, like, Okay, go to my insurance website. Alright, so what specialists are covered? Okay, so now, who’s closest to me in the Atlanta area. It’s a very big area. And so just because somebody is in the Atlanta area, they can still be an hour plus away from me. So I’m like, Okay, so let’s insurance and then closeness. And then All right, let’s see what the websites look like. And, you know, do they have a lot about the doctors and their credentials, and things like that, but I’ve done that with with other specialists, I’ve kind of gone through that, that research. I think I’ve done more research on doctors sometimes than I have on buying a car. Because that’s a little more important. Like, you know, a car is gonna get you where you need to go, but a doctor is going to be the one that you know, make sure that you are able to function, so a doctor is a little more important, but like I said, with this one that was like, Okay, this practice is taking over and then I was kind of like, assigned to doctor. I didn’t even get the doctor’s name until like a week or so ago. So it was Oh, wow. To me. They’re auditioning for me, not the other way around. It’s like do I want to stay with them? Do I trust them enough? That’s how I always look at it. It’s not Am I good enough to see this doctor is like, is this good? Is this doctor good enough to see me?
Zoe Rothblatt 19:30
Yes. I Love how you just framed that it’s it’s under the same umbrella as this medication failed me. I think we need to do so much in flipping the script on what happens in our care and, and we are you know, we’re the person it’s our life. You know, it’s up to us to have a say and be the main person.
Eddie Applegate 19:51
And feel comfortable with the doctor. And so I think that that’s, that is important that we’re not auditioning for the doctor. The doctor is auditioning for us. We want to make sure that we have that comfort level and the that they have the knowledge base that we require of a clinician. So if they don’t we search again and I know that unfortunately, especially with rheumatologists, it is tough to find multiple rheumatologists in an area. And so some people are kind of stuck with who they have just because of the lack of rheumatologists in the area, if you can and have to, you know, find the one that’s right for you.
Zoe Rothblatt 20:27
Well, on that note, thank you, Eddie, for joining us today and sharing your insights and advice from your journey. I know it’s going to help so many people. So thank you.
Eddie Applegate 20:36
You’re very welcome.
Steven Newmark 20:38
Wow, that was really great hearing from Eddie. Now, what a fascinating journey that he’s had with psoriatic arthritis. I’ll preempt your questions only by saying I really learned a lot about you know, advocating for yourself with your doctor. And you know, just hearing from patients like Eddie is so valuable to the community at large.
Zoe Rothblatt 20:55
I totally agree. Listening to Eddie was so important just about his tips about you know, don’t be shy, the doctor is there to help you. Speak up is really helpful reminders.
Steven Newmark 21:06
Well, we hope that you learned something, too. And before we go, we want to give a shout out to Healthcare Matters, fantastic program, run by our colleagues, Conner and Robert and they’ve done many deep dives on important issues and you could check it out, along with all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 21:22
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, please give us a rating and write a review on Apple Podcasts. Hit that subscribe button and check us out on YouTube. I’m Zoe Rothblatt
Steven Newmark 21:38
I’m Steven Newmark. We’ll see you next time.
Narrator 21:41
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 19- Advocating this Black History Month
This week the hosts cover the latest news on copay assistance, the FDA’s finalized guidance on clinical research for cannabis, and New York’s decision to end the mask mandate in health care facilities. The hosts also discuss the importance of sharing Black patient stories this Black History Month while shining a light on health disparities.
“Going to Capitol Hill, going to your state legislators, and just telling them your stories, it’s such a big deal. And when you say amplifying patient voices, that’s what we mean. When we talk about amplifying Black patient voices and their experiences, it’s the exact same thing,” says Steven Newmark.
GHLF Black History Month: https://www.ghlf.org/black-history-month
S5, Ep 19- Advocating this Black History Month
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:09
Going to Capitol Hill going to your state legislators and just telling them your stories, it’s such a big deal. And when you say amplifying patient voices, that’s what we mean. When we talk about amplifying black patient voices and their experiences, it’s the exact same thing. 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, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:37
Our goal is to help you understand what’s happening in the healthcare world, and to help you make informed decisions to live your best life. Today we’re going to talk about Black History Month, its importance, some research updates and how we can amplify black patient perspectives.
Zoe Rothblatt 00:52
But first, we do have a few news updates. Steven, I think the most exciting update is this amicus brief that you worked on. Can you tell me in our listeners about it.
Steven Newmark 01:00
GHLF, along with 28 other groups have asked a US District Court to accept our amicus brief in a litigation concerning a 2021 federal rule. The rule essentially says that health insurers do not have to count the value of drug copay assistance programs towards patient out of pocket obligations. This is a big deal. This is something that we have been fighting for for many years, the idea of using copay assistance programs and having it count towards out of pocket cost obligations. If our amicus brief is accepted, it will help the court understand how copay accumulators negatively impact patients, caregivers and health care providers. If we’re successful, it will allow for patients to continue to use copay assistance programs and count them towards out of pocket cost obligations.
Zoe Rothblatt 01:49
This is a really big deal to help patients because often these co pays really add up and if it’s not counting towards the deductible, it just becomes like a big financial burden over the course of the year. Steven, I’m wondering though, what exactly is an amicus brief?
Steven Newmark 02:04
Good question. So typically, civil litigation is only between two parties a plaintiff and a defendant. In this particular case, the litigation was brought by several patients along with some patient organizations that represent those patients. However, in some cases, the outcome of the litigation has the potential to impact people other than the two parties litigating, the plaintiff and defendant. For such cases, you look to file what’s called an amicus curiae, which is Latin for friends of the court. And we are looking to enter as an amicus, or friend of the court, to provide the court with relevant perspectives, information and arguments that show the court how our particular ruling could affect non-litigating parties, in this case, how it will affect patients. Is that helpful?
Zoe Rothblatt 02:46
Yeah, that’s really helpful. It’s ultimately raising the voice of patients within these conversations and saying, you know, this is affecting a large group of us.
Steven Newmark 02:54
Absolutely. It’s kind of like how we advocate in the legislative branch of government, the first branch of government. We go to legislators and seek to educate them on the patient perspective and what patients are dealing with in terms of accessing their needed therapies. This is essentially like advocating to the judicial branch or specifically to a particular court.
Zoe Rothblatt 03:14
Great, well, I’m excited to see what happens here. And I hope that the court is on our side and understands, you know, the need for patients to have a copay assistance and it counting towards their deductible.
Steven Newmark 03:26
Definitely. So we’ll see how that goes. In other news, the Food and Drug Administration finalized a 2020 draft guidance detailing the agency’s recommendations for clinical research for developing cannabis and cannabis derived human drugs.
Zoe Rothblatt 03:41
So this guidance really impacts research and ultimately at the end of the day patients in our community. So it says that, you know, those involved in the clinical research of cannabis can rely on this FDA guidance for a few things; recommended sources of cannabis for clinical research, resources for information on quality and control status, and also how to calculate THC differences. So just a bunch of technical things to help improve the quality of research around cannabis.
Steven Newmark 04:12
This is great news for our community, we’re always looking for any kinds of way we can get help with therapies to make life more bearable. And if there’s something that can be found from hemp, or cannabis that’s going to, you know, clearly make a difference in the lives of our patients. I’m curious if this is something that we spoken with our patients about and any feedback we’ve received,
Zoe Rothblatt 04:32
Actually, it’s interesting you bring that up what the patient perspective is, because in 2019, we did a survey of our community with rheumatic diseases. And we found that over half had tried medicinal cannabis at least once and most commonly for pain. Actually, 96% said that they did it for pain. Further, like whether or not they had used it 66% said they wanted more information about it and over half said they prefer to have that information come from their physician. So I think when we look at this final guidance from the FDA, it will help get some research that patients can talk about with their doctors and sort of legitimize the space.
Steven Newmark 05:13
Yeah. Well, it seems sort of axiomatic that any more information on the use of cannabis and how it might be helpful will certainly be a good thing.
Zoe Rothblatt 05:22
Great. Okay. Well, our last piece of news, New York State ends the mask mandate in healthcare facilities.
Steven Newmark 05:29
As of our recording, actually, this means that healthcare settings, hospitals and nursing homes are essentially setting their own masking rules individually.
Zoe Rothblatt 05:37
So this is in line with what happened federally. Back in September, the CDC removed the federal mandate requiring mask and health care facilities. And I tried to look up what other states are doing. And it was actually really hard to find data, it was all websites that haven’t been updated in some time. So it’s not clear if other states have their health care facilities are still masking. And I guess it’s sort of you have to be local and be going there to find out what’s happening, which is a little concerning that that information isn’t more available.
Steven Newmark 06:07
I wonder if it’s a county by county thing in some states, I actually don’t know. I do know that I’m selfishly very concerned about this, the idea of having to go to a hospital and not knowing what the masking rules are, is concerning the idea of going to a hospital, if you’re immunocompromised, if you’re elderly is a scary thing. Hospital acquired infections are a real thing, you know, I would think pre COVID, the idea of wearing a mask is something that should have been explored. But in a post COVID world where hundreds of people are still dying on a daily basis. And in a facility where let’s be honest, there’s a lot of sick people in that facility.
Zoe Rothblatt 06:43
In a hospital? No way!
Steven Newmark 06:45
You would, you would think that they would want to keep the spread of all diseases to a minimum. So it’s concerning, I just think of a scenario where an elderly relative has to go in for surgery, if you’re not wealthy, you have to share a room during recovery. So you share a room and you’re sharing a room with somebody who doesn’t want a mask and who knows what they’re in there for. And they bring in their relatives during visiting hours. And those relatives aren’t masked and other relatives down the hall, they’re not masked, so on and so on, and so on and so on. And meanwhile, this elderly individual who just came in for surgery is now be exposed potentially to harmful viruses.
Zoe Rothblatt 07:20
Yeah, I mean, also for just our community with chronic disease, who often uses health care facilities just for routine care. I know some of my doctor’s offices are in the hospitals. So I do have to go through the hospital in order to see them. And I just wonder how many people are going to forgo their regular chronic disease care because they don’t want to be put at risk and just end up in a worse health situation overall. I always felt like the rules, the mandates from the state or from the government, at least give the perimeter for the local institution to say, hey, it’s not our policy. It’s kind of like the no dogs in restaurants policy. Like, “Oh, I’m a restaurant or I Love dogs. I would Love to have your dog in my restaurant. But you know, it’s not me. It’s the health department.” But without that excuse, it’s going to make it more difficult for hospitals to implement their own rules, I think. I agree. Well, for now, though, I think New York City announced that masks will still be worn in their public hospital system.
Steven Newmark 08:17
Yes.
Zoe Rothblatt 08:18
So we will see how that holds up.
Steven Newmark 08:21
And the private hospitals in New York City and upstate New York have said that, you know, TBD to be determined, we’ll see we’ll see what they decide to do.
Zoe Rothblatt 08:32
Alright, so let’s jump into our big topic of today. It’s Black History Month, which is a time to just celebrate the great achievements and commemorate important black heroes and events throughout our history. But also as people in public health and the health care world, it’s a time to reflect and raise awareness of racial and ethnic disparities across these health sectors. And you know, what we can do to help change that.
Steven Newmark 08:56
There’s always more work to be done in this space, and GHLF continues to honor, amplify and uplift the experiences of those living with chronic illness in the black community. You can check out a portion of our work at ghlf.org/black-history-month for patients stories, and to learn more about health disparities. And we’ll put this in our show notes as well.
Zoe Rothblatt 09:17
So health disparities, let’s talk about that for a minute. First, I just want to say, why talk about health disparities. It’s important because, you know, recognizing them helps create change, you know, we’re not going to create change if we’re not talking about them. And we need to keep highlighting what’s going on in different communities, say that it isn’t people’s fault. There’s inequities in our system that lead to these health consequences. And you know, there are actions we can take but we can’t blame the individual. It’s on us as a public health community to recognize and take action on these.
Steven Newmark 09:52
We talk about health disparities, it’s a sad state that depending on where you live, your zip code can determine your life expectancy. And there is a range of almost a decade difference of life expectancy from some of our longest living zip codes to some of our lowest life expectancy zip codes. According to the CDC, nearly half of all African American adults have some form of cardiovascular disease and stroke, about two out of every five African American adults have high blood pressure, and less than half of them have it under control. And when it comes to breast cancer, black women have the highest death rates of all racial and ethnic groups and are 40% more likely to die of breast cancer than white women.
Zoe Rothblatt 10:30
You know, the heart wrenching part is that this list can go on and on. That’s just a few of the many health disparities that exist in our healthcare system, especially for our black friends. And it’s important to talk about this and, and let people know that, you know, these exist, and we need to do something about it. I actually saw this recent study that suggested that racism might contribute to inflammation. I know, we already know that racism and discrimination impact many aspects of life. But this recent study looked at how racism and discrimination might disrupt what they call the brain gut microbiome system. They did some MRIs, and also some blood tests and microbiome analyses. And at the end of the day, what they found is that the blood tests revealed that black participants in the high discrimination group had high levels of this enzyme that leads to inflammation and Hispanic participants did as well. And the microbiome analysis revealed that they had high levels of bacteria in the black individuals in the study. And this was where people face high levels of discrimination. So ultimately, what this meant is that bodies are showing that high levels of discrimination lead to higher levels of inflammatory enzymes, protein things in the microbiome that cause inflammation.
Steven Newmark 11:53
Is there a theory that higher levels of stress were causing this enzyme to form? Or was it something that is in the genetic coding of individuals with certain backgrounds?
Zoe Rothblatt 12:04
I think it was the first about stress because they broke them down by discrimination groups. And I think, you know, discrimination isn’t something you’re born with. It’s something you experience.
Steven Newmark 12:16
Oh, interesting, interesting. Did they break it down by socioeconomic status to try and hone in on that? Or
Zoe Rothblatt 12:21
I’d have to look back at that? I don’t think so. I think it was like by white, black, Hispanic, different races.
Steven Newmark 12:29
Interesting. Well, not surprising, unfortunately. But certainly interesting. And I’m sure that’s one of just many, many studies that detail the health disparities in our system.
Zoe Rothblatt 12:39
Yeah. And I hope that research like this, just like shines a light on the injustices and helps people recognize that we need to take action and that these are legitimate things happening to people in altering the chemistry of their body because of discrimination. It’s not Okay.
Steven Newmark 12:57
Absolutely. Absolutely. So what can we do as advocates to help on this front. As a start amplifying black patient voices and their experiences to help fight for equitable access to care is one place to start.
Zoe Rothblatt 13:09
It’s a coincidence this week is headache on the hill. And this is an advocacy event that brings together health professionals, migraine and cluster headache patients, and caregivers, anyone really related to migraine headache to advocate and and give asks of Congress to help improve access and funding towards these diseases. And actually, historically, there’s been a really big lack of representation in the migraine community. And I want to give a shout out to our colleague, Sarah Shaw, who is the Senior Manager of BIPOC Patient Outreach. She’s changing that. She put together a group of BIPOC patients who are right now on the Hill sharing their stories to help affect change for others.
Steven Newmark 13:48
It’s just like we always say going to Capitol Hill going to your state legislators and just telling them your stories. It’s such a big deal. And when we say amplifying patient voices, that’s what we mean. When we talk about amplifying black patient voices and their experiences. It’s the exact same thing with a micro advocacy component to it. And it’s great that Sarah’s doing that, it’s great that she’s brought together this group of patients who will be sharing their stories as well all week.
Zoe Rothblatt 14:11
And really quickly just you know, to end our show, I wanted to share a few quotes from the patients on this council on why they advocate. Lesley says, “As a black woman representation matters in the migraine advocacy space and working to promote health equity as key.” Tamisha says, “I advocate because I know what it’s like to suffer in silence and be misunderstood in regards to the wide array of migraine symptoms. Migraine is far beyond a headache and migraine sufferers deserve more acknowledgement and consideration for their varied symptoms.” Lastly, I’ll share a quote from D’Sena who says, “I also advocate because I believe our voices are worthy of being heard in a system that is constantly trying to push us off as someone not worthy of the care we deserve.”
Steven Newmark 14:55
Very powerful. I would always remind listeners that advocacy comes not just in meeting with legislators but also in one on one meetings you have with your health care providers. Be a strong advocate when you’re talking to your doctor or for your own health care.
Zoe Rothblatt 15:08
Exactly. Find doctors that you feel comfortable with that look like you. I know that’s a really big deal in the black community is to be able to have someone that understands you on a deep level and just have that representation. It really matters. And I’m so excited that Sarah and this group are on the Hill this week advocating for things like that.
Steven Newmark 15:26
Absolutely. Absolutely. So we look forward to hearing back from Sarah and see what she’s able to accomplish down there.
Zoe Rothblatt 15:32
All right, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 15:36
Well, I learned about the great interest in the GHLF community about the potential use for medical cannabis, and which just shows the importance of what the FDA is doing and trying to increase research in that field.
Zoe Rothblatt 15:49
And I learned from you about what an amicus brief is and how it can help patients have better access to their care.
Steven Newmark 15:56
Well, we hope that you’ll learn something too. And before we go, we want to give a shout out to The Asthma Podcast, an excellent new podcast. In the first few episodes, our hosts talk with the LGBTQ individuals and how they navigate their identities, relationships and asthma all at the same time.
Zoe Rothblatt 16:10
Definitely check it out at ghlf.org/listen. Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts and definitely check us out on YouTube as well. I’m Zoe Rothblatt.
Steven Newmark 16:29
I’m Steven Newmark. We’ll see you next time.
Narrator 16:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 18- Building Better Ancestors with Dr. Mark Rosenberg and Maria Thacker Goethe
The Health Advocates are joined by Dr. Mark Rosenberg and Maria Thacker Goethe to learn about the Building Better Ancestors project, and their work on improving access to affordable care. Dr. Rosenberg and Maria help us understand public health problems, how we can use past learnings as framework to improve our future, and the steps that can lead us to solutions that promote health equity.
“And we’ve taken nine lessons from the eradication of smallpox, that we think make a really useful framework for thinking about diseases, — whether it’s a new pandemic threat, whether it’s a chronic disease, or I think it’s useful even from the perspective of an individual patient,” says Dr. Rosenberg.
S5, Ep 18- Building Better Ancestors with Dr. Mark Rosenberg and Maria Thacker Goethe
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Mark Rosenberg 00:09
We’ve taken nine lessons from the eradication of smallpox, that we think make a really useful framework for thinking about diseases, whether it’s a new pandemic threat, whether it’s a chronic disease, or I think it’s useful even from the perspective of an individual patient.
Steven Newmark 00:30
Welcome to The Health Advocates, a podcast that breaks down and major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:39
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:43
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.
Zoe Rothblatt 00:49
Today, we have two special guests with us to talk about their work on the Building Better Ancestors Program Health Equity and Vaccine Access. So listeners please enjoy Dr. Mark Rosenberg and Maria Goethe.
Steven Newmark 01:03
We’re very excited to have with us today Dr. Mark Rosenberg and Maria Thacker Goethe from the Center for Global Health Innovation. So this is a very exciting day for Zoe and me to have these two great guests with us. And before we get into a discussion, I want to just turn it over first to Dr. Rosenberg, to tell us a little about yourself and to Maria as well.
Dr. Mark Rosenberg 01:24
Well, thanks, Steven. I have been very interested in what the patient experience is. I’ve worked in public health, I trained in internal medicine and infectious diseases, and in psychiatry, and spent most of my career working in public health, working on violence prevention, and working on global health issues, large scale diseases that require collaboration, and the collaboration of multiple institutions to try and address these problems.
Zoe Rothblatt 01:55
Thank you so much for all the work that you’ve done, Dr. Rosenberg. And Maria, welcome to The Health Advocates. Can you introduce yourself, please?
Maria Thacker Goethe 02:03
Sure. It’s great to be here. Thanks for inviting us and having the center and of course, Dr. Rosenberg, one of our key community leaders to join us on the podcast. Yes, my name is Maria Thacker Goethe, I’m CEO for the Center for Global Health Innovation. At the core of everything we’ve done for the last almost 17 years now for me, has been around patients, how do we drive innovations and cures and therapies to patients to make them live their best life have access, improved access to care and affordable access to care. And I would say one of the highlights since I took over the organization a few years ago, has been helping to establish one of the only patient advocacy alliances in the southeast. And my role is working with industry and public health leaders is actually bringing them to the table to hear directly from the patient. Beginning this year, I’ll actually be sitting on the governor’s task force for rare diseases, and here in Georgia, and I look forward to being the voice of innovation and industry alongside a number of patient groups for that committee starting this year.
Steven Newmark 03:00
So one of the great things that you guys are working on together is the Building Better Ancestors Project. I wonder, Dr. Rosenberg, if you could tell us a little bit about the impetus for the project and what it is that the project hopes to hopes to learn and hopes to and what it aims to do essentially?
Dr. Mark Rosenberg 03:15
About three years ago, the world celebrated the 40th anniversary of the eradication of smallpox. Smallpox was one of the most devastating diseases ever to hit planet Earth. In the last century alone. In the 20th century, more than 300 million people died from smallpox, and it’s a horrendous, terrifying disease. But in 1980, the World Health Organization declared this disease eradicated. It was the first and only human disease ever wiped off the face of the earth. This was an extraordinary achievement. Really, when you think about the diseases we all live with. Now, this was a terrifying disease that was eradicated. And we thought it would be important to take what are some of the lessons from that success. This was the greatest success, the greatest achievement ever, of global health. We said, Let’s take some of the lessons from that eradication, and see if we can’t use them in fighting future epidemics, future pandemics, and even diseases that we live with every day. Aren’t there some lessons there that would be useful? And so we set about trying to extract the lessons and the things we learned. And we’ve taken nine lessons from the eradication of smallpox, that we think make a really useful framework for thinking about diseases, whether it’s a new pandemic threat, whether it’s a chronic disease, or I think it’s useful even from the perspective of an individual patient. One of the differences between public health and health care is that in public health, you think of everybody who has the disease, the whole population, at risk. In healthcare, you think about the patient who’s in your office right now, that’s your focus. It’s a very important focus. But these are different. And public health is hard. It’s hard to think about how you protect everyone, and how you take everyone into account. And we thought that if we take these nine lessons, it makes it easier to do the work, to see the big picture, to see the problem and understand the problem. And I think these nine lessons are really applicable to an individual dealing with their own illness, and their own disease. I can tell you very quickly what these nine lessons are. The first one is this is a cause and effect world. If you understand the causes, you can change the effects and sciences the way we understand the cause and effect relationship. So it basically says use science to understand your problem. The second lesson is, know the truth, share the truth and act on the truth. Know about this pandemic. Know where it spread, know who’s at risk. Know your enemy. Know the bacteria, know the virus. In terms of an individual’s disease, it means, find out everything you can about your illness, so you can be in charge so you can plot the course. But know the truth. Even if at first you think you can’t stand to know everything. It’s your best course find out, ask the questions know the truth. The third lesson is coalition’s are essential. These problems, whether it be COVID, smallpox, or an individual with severe chronic arthritis, it’s important that we work with other people to solve them. For something like COVID-19 There’s no one individual, there’s no one institution that can solve the problem by themselves. As a patient, we need to form alliances with our care teams, with our families, with our friends, coalition’s are essential. Lesson four is avoid certainty. We don’t know things for certain once and for all, because our knowledge changes, our mind changes. What we need to do to prevent or treat something changes as new things are found out as new treatments and cures, come into being and if you’re certain that you know everything about it. That means you don’t want to learn anything more about this problem. But science evolves things change, avoid certainty. It’s the Achilles heel of science, Lesson five, building evaluation and continuous improvement. We need to evaluate where we are with respect to a disease. And we need to take that information into account and be willing to change course as we go forward. Lesson Six, respect the culture. In global health, a lot of times when we’re working in countries that are foreign to us, we need to understand the culture. We don’t tell people what to do, we work with them. We have to understand their perspective. Even if it’s an individual patient. We need to understand the medical culture. And doctors need to understand us. Lesson number seven, seek strong leadership and management. The best decisions are made with the best science. But the best outcomes really depend on strong leadership and management. Take the help, step up into your disease into your care plan. Help manage what’s going to happen to you. Lesson number eight, mobilize political will. In the world of global health, if you want to get something done, it may involve having the government do it. It may involve having the World Health Organization act. It may involve Congress, but mobilize political will because with it, you can do anything. Without it, almost nothing. And the last lesson, lesson number nine, move towards global health equity. The best solutions move us towards equity and whether it’s the equity of how vaccines are distributed, or whether it’s a public health problem like gun violence. We want to make sure that the people at greatest risk the most vulnerable people get the same attention, have the best chance of fighting this problem as those with the most resources. So those are the nine lessons, I would turn it over to Maria, because she has led some very important work on things like vaccine equity,
10:13
Definitely. And I would add, I’m a patient myself, so I certainly and sit on a patient board and I firmly believe in all these lessons and at the Center for Global Health Innovation the core of our mission is around using innovation to help achieve health equity. And these nine lessons really align with how we operate, and in their integrated in everything we do. Now, all these lessons are crucial to what we do, including the vaccine work we’ve done for the last few years during COVID. And in particular, our work in vaccines has been in getting vaccines to underserveed and vaccine hesitant communities has been one of our biggest efforts during COVID. And also mentioned that how we’re moving I wouldn’t say beyond COVID because we still work in COVID, but how he wants to apply some of the work we’ve been doing to other disease areas is really important. So the center over the last few years has work closely with CDC and other federal agencies to tackle the challenge of talking about vaccines, vaccine hesitation, and building trust. And it has been all around coalition’s. Our project over the last year has actually been the most one of the biggest projects we’ve had and shown us a unique model that we can use to tackle other disease areas. The primary goal of that program is to work in underserved and under vaccinated communities to promote vaccine confidence in COVID-19 vaccine and increased vaccine rates. And to do this, we really leveraged our partner network and our collaborative strategies. So that already speaks to two of the lessons here, including coalition building, as well as management having the proper management to bring together an ecosystem of community health workers, local clinics, health professionals and providers, community based organizations, public health expertise. And by building this coalition and building partnerships, across a diverse set of public private partnerships, we were able to do something that is core to everything we do at the center. And that is work to build trust. We work to have everybody at the table. As we were developing training pathways as we were providing training, we wanted the voice from you know, the person the the academic at Emory and Johns Hopkins. But we also needed to hear from people like Reverend Sheffield, we work with a lot of black churches across the states and understand well what these experts are saying, really resonate with the communities they’re working in and providing parent education into. And by having them there at the front end of this entire process allowed us to build trust, have coalition’s that people believe in. And frankly, now we have the momentum to tackle other things. So really at the core of what we did, we identified and hired over 115 full and part time community health workers across 13 communities in seven states. And through that we’ve been able to mobilize over 75 partner organizations. And we’ve reached over a million people to discuss vaccine hesitancy in just less than six months. Some of it’s through direct intervention through social media, others through community health workers. And really what we’ve done is turn the model on its head, we find community health workers that live and work inside the communities are providing care to, and not all of them are necessarily certified. They go through a training with us and they learn how to deliver care. And the the thing is we’re meeting communities where they’re at. So you know, a nine to five community health worker may not be able to go to a church service or a get together after a church service on a Sunday afternoon because they work Monday through Friday. But us working and identifying community workers that live and work in that faith based area in that particular case, they’re there, they’re at the at the dinners for the community on Saturday, or the soccer game or whatever it might be. The best thing is we’ve had real economic impact into these communities, we’ve created jobs. We pay, of course, the community health workers, we do not come in and say we need you to volunteer for the good of your community. We’re giving you a livable wage for this work. We’ve been able to really tackle a variety of addressed a variety of different social determinants of health through this. And what we’ve seen now is these communities and these community health workers are like, Okay, COVID Great, let’s keep doing that. And now we’re looking to scale this program beyond just vaccine education and training to tackle a lot of these other disease areas. And we’re very excited about, you know, the impact we’re having and the how we’re empowering these communities to take ownership of what of creating the change and and they also learn about these amazing innovations.
Steven Newmark 14:48
Very exciting and we definitely look forward to seeing the public launch of what you’re what you are finding. I’m wondering Maria, if you could tell us or Dr. Rosenberg to both talk about the are the nine key lessons that you describe and and how you think it’s going to impact patients as as the hope is that it develops more in the community, both the healthcare community, as well as the patient community and just the general population.
Dr. Mark Rosenberg 15:16
Good question, Steven. I think that this framework is a way for patients to take control of their health and of their care. And working for many years as a physician and working with patients, I came to understand that being in charge of your own health and your own health care is not easy. It’s kind of like attacking an epidemic or a pandemic, whether it be COVID, or Ebola, or TB, or measles, heart disease, diabetes, it’s not easy. And you need some help, especially since doctors for many, many years didn’t really share information with patients they didn’t. And what patients need, I think, is a framework for understanding everything that can impact their health. And this is a framework that will do it. We have a website called Nine Lessons, the number nine, 9lessons.org. And on that website, anyone can go there. One of the driving forces behind this project was that we wanted to make this information available for free to everyone. The future leaders of patient health and patient care is everybody, everybody who’s a patient. And we may not all think of ourselves as patients yet, but we will be sooner or later we will be. We all spend time in healthcare, we all will spend time in a hospital. And how do we navigate this. So these nine lessons are available for everyone, on 9lessons.org. And there’s a trailer that explains the origins of this project, how it came from, and why it evolved from the lessons of smallpox. Unfortunately, when there’s a pandemic like COVID, everyone gets worked up about it. Everyone at first is scared and frightened. We see pictures of patients on respirators dying in hospitals, overwhelmed doctors and nurses, and healthcare workers. And for a while, but unfortunately, only for a while. We’re all paying attention. We’re doing what we need to do, and we’re learning what we need to learn. But as soon as the big threat passes, we seem to forget the lessons that we learned. And we go back to not investing in developing new vaccines, developing new treatments, informing people as Maria said, it’s really important that people understand and that the doctors and healthcare workers understand the people and where they’re coming from. People are not born with vaccine hesitancy. They’re not born afraid of the hospital. But fear often keeps us back. But these nine lessons, I think, are way to overcome any fears we may have. They’re kinds of clear directions of what we need to take control, whether it’s of a pandemic, or of our own illness. And they’re very useful.
Zoe Rothblatt 18:38
Thank you, Dr. Rosenberg, I, I totally agree. And, Maria, I’ll turn it over to you. What do you hope that people learn and what this will improve for lives of patients and public health generally?
18:49
Well, I really think Mark hit on it all. I think for me, I also hope that it creates some actionable results and efforts. So and that gets around really to who the Center is and what we believe we believe global is local. I think that’s one thing I continue to stress. We have communities that have very poor health impact numbers and health data points. And it’s not just over there. Global is not just over there. We have challenges and southeast southwest Atlanta, we have challenges in Appalachia, we have challenges in a variety of different communities that can be impacted by the work of public health professionals and innovation. My hope is really these lessons are picked up and harnessed by not just future public health leaders and providers, but also innovators. So they understand their piece in the entire puzzle building process here to tackle health inequity. That is what the center was designed to do to really advocate whether that’s through coalition building true policy, educating policymakers and also creating a voice on behalf of public health beyond just other entities. We want to talk about it in our day to day communication. Everything we’re going to do as we move forward, we’ll be tying in these nine lessons. Because coalition building and all the other nine lessons are crucial to everything we do as an organization. And we’ve seen as necessary in order to make change in these communities. So that’s really what our focus is going to be. And that’s how I see these making an impact, at least with the work we’re doing here at the center. But hopefully, also, we’ll be able to elevate the work that many other global health organizations are doing, that many people in the public are unaware of,
Dr. Mark Rosenberg 20:24
I want to leave you with a word about lesson number nine, that the best solutions move us closer to global health equity. And someone I called a brother I was very close to and loved was a tremendous pioneer in the area of global health, named Paul Farmer. And Paul died last year. But one of the things Paul always said is that the source of all evil in this world, is the belief that some lives are worth less than others, the belief that some lives are worth less than others. And it means that if you’re a poor person in a poor country, with a chronic disease, like drug resistant TB, your life is still worth as much as anyone who’s rich from a well developed country. And I think on a personal level, it means that even if we have a disease, or two, or three, that we are just as important as anyone else. Our life is as important as someone who’s not sick at all. If we’re old, our life is as important as someone who’s young, and very healthy. And I think that keeping this in mind, that the best solutions move us towards health equity. You are, we all are, we all are equally important. And I think this notion of taking charge of our health of our health care of our lives and our family. That’s really the core of what these nine lessons are about helping us take charge and move towards becoming better people, becoming better ancestors, and taking what all of us have learned from our experience. And the experience of living with a chronic disease teaches us so much. We learned so much. And this project says take stock of what you’ve learned. And pass it on, pass it on to your children, to your friends, to your family, to the world become a better ancestor. It’s within all of our grasps, it’s within our reach. That’s what it’s about living better lives and passing on what we know, to ensure a better future. So thanks for this chance to talk about these things. We really appreciate what you do and the chance you’re giving us to share our messages.
Steven Newmark 23:15
Yeah. And thank you both for coming on our show and sharing your message and all the work that you’re doing.
Zoe Rothblatt 23:21
Yes, thank you.
23:22
I was just going to close by saying you please go check out the trailer, go to 9lessons.org. These are nine simple, proven and reliable ways to approach global health threats learned from the successful effort to eradicate smallpox. They provide guidance for addressing all sorts of problems from COVID-19 to climate change, structural racism, gender equity, and criminal justice. It really applies to everybody. And it really can be a valuable asset for how you leave your legacy behind.
Zoe Rothblatt 23:51
Thank you both so much for joining us and for all the work that you do to uplift the voices of the community.
Steven Newmark 23:58
That was great hearing from Dr. Rosenberg and Maria. It’s fantastic what the work that they’re doing.
Zoe Rothblatt 24:04
I know so you know, what did you learn today? Give us one there were so many but help pick one out.
Steven Newmark 24:08
I guess my learning is just how many folks are out there doing such great things and to hear about their particular plan in addressing health equity, really eye opening.
Zoe Rothblatt 24:09
And I really loved hearing from Dr. Rosenberg about, you know the value of a life and the importance of each life especially when you’re disabled and have chronic illness that you still matter.
Steven Newmark 24:30
Absolutely. Well, we hope that you will learn something too. And before we go, please make sure you take a listen to Talking Head Pain. New episodes are out. Check it out along with all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 24:43
Well everyone. Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, please give us a rating and write a review on Apple Podcasts. Hit that subscribe button and check out YouTube. I’m Zoe Rothblatt.
Steven Newmark 24:58
I’m Stephen Newmark. See you next time.
Narrator 25:02
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network
S5, Ep 17- The End of the Public Health Emergency: What’s Our COVID Action Plan?
This was a big week for health news. We learned that the U.S. will end the COVID public health emergency in May, Evusheld is no longer authorized by the Food and Drug Administration (FDA) and the FDA is meeting about an annual COVID vaccine strategy. What does this mean for you as someone who lives with chronic illness? The Health Advocates break down the pros, cons, and questions that remain.
“It just is kind of upsetting when you realize how health care can be offered so efficiently and now funds are going to be decreased and barriers are going to be put in place to access these different services. And it’s upsetting to go backwards. And that declaration means we have to go backwards in care,” said Zoe Rothblatt, MPH, Associate Director, Community Outreach.
S5, Ep 17- The End of the Public Health Emergency: What's Our COVID Action Plan?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:11
It just is kind of upsetting when you realize how health care can be offered so efficiently and now funds are going to be decreased and barriers are going to be put in place to access these different services. And it’s upsetting to go backwards. And that declaration means we have to go backwards in care.
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 00:42
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:47
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 00:54
Hey, speaking about what’s happening in the health care world, a lot has happened since our last episode, Steven.
Steven Newmark 01:00
That’s right, the FDA met to discuss annual COVID shots, we got a COVID-19 Action Plan from the CDC, and we also learned that the COVID public health emergency in the United States will be ending in May.
Zoe Rothblatt 01:11
So let’s break it down for our community what they need to know. And I think we’ll start with the end of the public health emergency, perhaps the biggest news of all.
Steven Newmark 01:20
Yes, for sure. Let’s start there. Earlier this week, President Biden informed Congress that he will end the COVID-19 National Emergency on May 11.
Zoe Rothblatt 01:30
So these are two emergencies that have been extended throughout the pandemic. The first one started at the end of January when Secretary Alex Azar of Health and Human Services declared a public health emergency. And then in March 2020, as you all recall, President Trump declared COVID pandemic a national emergency. And these have just been extended throughout and now it became the final decision to end and stop extending them.
Steven Newmark 01:56
So what is it about this particular week in early February that is leading the White House to make this a declaration?
Zoe Rothblatt 02:04
Republicans in the House have been putting pressure on to end the pandemic, they have the Pandemic is Over Act, which would end the pandemic immediately. And ending something immediately would have serious consequences on our health system and different programs we’ve got throughout the pandemic. So with President Biden stepping in and saying you know it’s going to end on May 11, it gives the system a few months in order to transition slowly.
Steven Newmark 02:31
And what does this mean generally for the public at large? What does it mean to say that the emergency is over as of May 11 is the actual date?
Zoe Rothblatt 02:39
First and foremost, it means that the White House believes our pandemic is in a new phase, one that’s, you know, less of an emergency than it’s been before. What’s interesting to note is that the World Health Organization still has COVID as a global health emergency. I know they did say we’re reaching this sort of inflection point where higher levels of immunity can lower virus related deaths. But you know, we’re still in an emergency according to WHO. So you know, what else does it mean?
Steven Newmark 03:11
Well, specifically here in the United States, it means we have been getting COVID tests and vaccines for free as well as COVID treatments. Now, once the emergency declaration is over, it’s going to depend on your insurance and potentially your state to there may be out of pocket costs for dealing with these issues.
Zoe Rothblatt 03:29
Right. And I was actually thinking, as you said that it may also be harder to find some of these things like for instance, testing. Testing sites have popped up everywhere, especially in New York City. I don’t know how it is now. But I remember, you know, basically, every two blocks, you could find a testing site, and I imagine a bunch of those will shut down now.
Steven Newmark 03:48
Right, that is likely to happen, which to be blunt about it is probably going to have particularly in the short term, an adverse effect, if you will, in the ability to get tested, the ability to obtain vaccines very easily means that they’re more widespread. It’s certainly not going to increase usage of vaccines and increase usage of testing to ensure that folks who are shedding the virus are out there in the public.
Zoe Rothblatt 04:13
One more point on this, are losing these services. But maybe now there’s going to be a little bit more barriers. It just is kind of upsetting when you realize how health care can be offered so efficiently. And now, you know, funds are going to be decreased and barriers are going to be put in place to access these different services. And it’s upsetting to go backwards. And that declaration means we have to go backwards in care.
Steven Newmark 04:41
We should be clear that for our community, for the Global Healthy Living Foundation community, you know, we’ll be watching closely the next three months to see what the transition is like. We’ll certainly be advocating that many of the policies will continue, policies such as the use of telehealth and reimbursement rates for telehealth being commensurate with going in person, such that it’s easy for folks to access their medical providers. Things such as free vaccines, or as much as possible making vaccines as readily available. General promotion of public health we’re gonna keep fighting for. We’re going to continue providing specific COVID support so long as our community needs it.
Zoe Rothblatt 05:17
Amen. An underscore that. The end of the Public Health Emergency does not mean the end of our resources. In fact, I know we talked about these from time to time, we recently did a quick poll to our COVID-19 Patient Support Program to learn more about what do they want to hear from us? What level of community support for COVID do you want. And about 77% want COVID updates from us weekly or twice a month, and then 73% want updates on COVID treatments and vaccines. 70% said they want updates on variants. And then 68% said they want information on how their medical conditions and medications may affect your recovery from COVID. So it’s just interesting to learn this from our community so that we’re able to provide the best resources and learn what our community wants, even as the general public may want something else.
Steven Newmark 06:08
Absolutely, absolutely. So we’ll continue to be a resource and we’ll continue fighting for resources and needs of our community but really public health in the United States.
Zoe Rothblatt 06:18
Yeah, speaking of losing resources, or restricted access, we recently got news that the Food and Drug Administration, the FDA, revised its decision and said that it no longer recommends Evusheld.
Steven Newmark 06:32
Just as a reminder, Evusheld is the preventive treatment for immunocompromised individuals for COVID.
Zoe Rothblatt 06:38
And the reasoning behind this was they said that more than 90% of the COVID cases are from the new variants, and those sub lineages. And data shows that Evusheld isn’t protective against these. So as long as we see these high numbers of the new sub lineages, it’s not going to be recommended to get.
Steven Newmark 06:55
And that’s one of the things I think that we’re going to keep fighting for is the idea of looking for new treatments. I think that’s what we need as we enter this next phase of COVID-19.
Zoe Rothblatt 07:04
You know, we got a lot of messages from our community saying like Evusheld helped me live a normal life and helped me feel protected because I didn’t get enough protection from the vaccine. So you know, we definitely want Evusheld 2.0, whatever that looks like.
Steven Newmark 07:17
Definitely, we need treatments, and we need real push to get proper treatments. So we’ll keep pushing forward on that. If Evusheld is not protective, you know, we don’t want to just give out placebo for no reason, of course, so.
Zoe Rothblatt 07:30
Exactly. It’s a risk benefit analysis. And right now, the benefits don’t outweigh the risks But what we did get was an action plan from the CDC, for people with weakened immune systems. I’m curious for your thoughts. But to me, it felt like more of the same that we’ve been hearing.
Steven Newmark 07:46
I agree. I mean, the outline essentially says get the updated COVID vaccine, like, who doesn’t know that, particularly for those with weakened immune system. Improve ventilation and spend time outdoors. Okay, we’ve been hearing that for almost three years now.
Zoe Rothblatt 07:59
It’s cold that’s not that easy, especially, you know, my aching joints, I don’t want to sit outside in 30 degrees. Thank you.
Steven Newmark 08:06
I know let me go, let me go through the rest of these, you’ll you know, try to refrain from laughing. Learn about testing locations and treatment options before getting exposed or sick. Get tested if you’ve been exposed or have symptoms. Wash your hands often. Wear a well fitting respirator or mask and maintain distance in crowded spaces.
Zoe Rothblatt 08:24
This is what we’ve been hearing since basically 2020. It puts the burden on people with weakened immune systems. The CDC messaging did say like for those in your household too, these things are really important. But it’s just a messaging that says, you know, if you’re the group affected, you have to take action. And it’s not about everybody else, which is really upsetting because there’s just so much burden on people with disabilities already. And now to say like, this is what you have to do in order to stay safe. It’s more of the same. It’s not giving us new answers. So it’s hard for me to formulate thoughts because I just feel like the aching hearts of our community and reading all this news this week,
Steven Newmark 09:04
Just to give a slight positive spin. I guess it formalizes things that we’ve known, which is good, I don’t know.
Zoe Rothblatt 09:10
I guess also, I just thought about, you know, other public health emergencies have ended. And I didn’t look back a few months down the line and said, You know, I really wish that emergency was still here. I didn’t feel the effects. We recently talking about the M-Pox declaration ended and looking back at Zika. Those kinds of things ended and yeah, life went on. And that gives me a better comfort.
Steven Newmark 09:36
No, absolutely. I said, you know, earlier in the podcast, I spoke about the short term effects, the long term effects are likely to be positive. You can’t constantly be in a state of emergency all the time. And it gives some more gravitas in the future should the CDC, should the US generally, need to make another declaration for an emergency for COVID or for another virus. So you know unfortunately, public health as we know, the image has been eroded in recent years living in a constant state of emergency, I think has not helped that. Whereas if we take out the emergency, and then we need to re put it back in at some point, I think we’ll be in a better state long term.
Zoe Rothblatt 10:16
That’s a good way to frame it. Yeah. Thank you, Steven.
Steven Newmark 10:18
Yeah, unfortunately, that doesn’t fit on to a good talking point. A nice talking point. I guess that’s the advantage of being on a podcast, we could talk for about 30 seconds at a time. Let’s move on now and discuss an important meeting that the FDA recently held, where they voted to approve an annual vaccine for COVID, similar to what is done for influenza.
Zoe Rothblatt 10:42
At first, I was wondering why now is this meeting but given all the news, I’m actually so happy that there’s a plan in place for vaccine rollout and that it seems like we’re looking at the strategy going forward, even if an emergencies declaration. So what is this, what did they vote on? Basically, they voted to approve an annual shot like the flu, which would basically say, you know, at this time, you’re eligible. And it might mean two vaccines for immunocompromised, or people that are older. And they also voted, in order to say we should use the bi-vaillant formula going forward. And that you shouldn’t have to start with your primary series and then be eligible. If you just show up, you should be able to get the new formula.
Steven Newmark 11:27
Hopefully, this will be more akin to the flu vaccine. Of course, flu vaccines are not taken by enough of the population as we know, but it at least puts us on a firmer footing, it sets us almost on a path of some regularity when it comes to COVID.
Zoe Rothblatt 11:41
Do you think that we’re at a time where we can look at COVID in that regularity with the waves?
Steven Newmark 11:47
On a positive note, we have had Omicron for over a year now. So there will always be waves. And just like with flu, they’ll always be new variants. Just like with flu, there will be seasons that will be particularly harsh, and others that we hope will be mild, it’s obviously impossible to predict with precision. But the hope is that there’s some level of predictability.
Zoe Rothblatt 12:09
I’m just thinking about how I don’t even think about the flu until the fall comes around. Like it really goes out of my mind in the summer.
Steven Newmark 12:17
Right, it’s much more seasonal.
Zoe Rothblatt 12:19
And I don’t feel like I’ve had that freedom with COVID.
Steven Newmark 12:22
Well, COVID is new, as more people build up some levels of immunity and continue to build some levels of immunity. You know, the hope is it will weaken, there’s a hope that treatments will continue to develop to make it more livable. Like I said, it’s still a new virus, and we’re still adjusting to it. But you know, flu was pretty scary when it first came on the scene in 19, what was it 18, 19.
Zoe Rothblatt 12:45
The original pandemic.
Steven Newmark 12:47
Yeah. Well, the old school, old school virus, yeah, you know, but the hope is, it will not be quite so damaging. I think the scary thing is that is for me, I think back to the early days of 2020, March, April, May, when there was this hope that we would just eradicate COVID, we would stay inside and it would go away. And now it looks like it will be here forever, like the common cold, like the flu. You know, I want to say Man, oh, man, it didn’t have to be this way. But here we are.
Zoe Rothblatt 13:17
I know. Now, you know, we’re almost at March 2023. Three years later, it’s hard to believe even all that time has passed. So I have a question. How would this actually work and getting an annual COVID vaccine, like what happens in predicting the flu shot?
Steven Newmark 13:32
So for the flu scientists at the World Health Organization meet twice a year. For the Northern Hemisphere, the strain decision that they decide to develop a vaccine for is discussed and decided upon in February for a fall vaccine rollout. So essentially look at what’s going on in the southern hemisphere, what’s likely to transpire in the northern hemisphere the following fall.
Zoe Rothblatt 13:52
So that would mean that right now, basically, they’re starting to meet for next year?
Steven Newmark 13:57
Sort of, for COVID-19, the FDA proposed that scientists meet in June for a strain selection for an annual Fall vaccine rollout. The timeline is possible for mRNA vaccines, not for Novavax, that short timeline. So we’re not sure what you know what that what that means exactly.
Zoe Rothblatt 14:14
So what other questions I guess came up that we’re not sure about?
Steven Newmark 14:18
Well, there’s a lot of questions. Let’s start with the first is this just going to be an annual thing or once a year thing? The FDA said winter is when the stress is on the hospital systems, most because of other respiratory viruses. We want to concentrate on getting people as prepped as possible for the winter rush. The FDA also said it seems seasonal patterns. I’m not sure how true that is. But but that’s what they’re saying. There’s a worry that that gives the impression that people only need to worry about COVID during the winter when we know the need is to be concerned at all times.
Zoe Rothblatt 14:47
Yeah, especially for people with weakened immune systems. It’s constantly on our minds. Absolutely. Even if it’s not, you constantly need to be in touch with your doctor and have a plan just in case. It’s not like only in the winter, could this happen.
Steven Newmark 15:03
Absolutely. You know, and just to be clear, look, the FDA is looking to do this annually for now. But that doesn’t necessarily mean it’s set in stone, they, you know, always evaluate and reevaluate, we really just have no idea what the long term plan is going to look like.
Zoe Rothblatt 15:19
Ultimately, I want to move forward and the FDA is looking at data, they’re, of course, much smarter than I am. I guess, with each phase in the pandemic, I always feel like a bit of apprehension going into it, and then I nestle into it. So I, I hope this could be like that. What’s happening with the rest of the world, though?
Steven Newmark 15:36
Well, the WHO provides universal annual recommendations for the flu vaccine, however, many are concerned that the US is going to dictate what is best because this is where the majority of the pharmaceutical industry is located, we have the most buying power. So as the United States goes, the rest of the world may follow. So if we go to an annual plan that may end up becoming harmonized worldwide.
Zoe Rothblatt 15:59
Yeah. It sounds like there’s a lot of discussions being had, unanswered questions. The committee that met, the FDA doesn’t have to take their recommendation, although they usually do. I’m pretty sure they stamp their unanimous vote on using the bi-vaillant formula, but it’s still up in the air about whether we’ll get annual vaccines
Steven Newmark 16:18
Bottom line, it sounds like in the future, we will get an updated COVID-19 vaccines maybe on an annual basis, maybe a booster for some folks like older adults, but not others. But if we use the flu model for COVID, we’re looking at an annual seasonal vaccine.
Zoe Rothblatt 16:34
Okay, Steven, I think that brings us to the close of our show what’d you learn about today?
Steven Newmark 16:39
I learned a lot. There’s too much in my brain right now. Ultimately, just having this discussion, I see the positives and negatives. And also just the tension sometimes between individuals health needs and the populations health needs. And sometimes what’s best for the population at large is not necessarily best for you as an individual. So you as an individual may need to take greater precautions when it comes to dealing with COVID. Still, and it would probably be best for you as an individual if the entire world did the same. But in terms of world population health, you squeeze too tightly and demand too much of people and it could have a negative effect ultimately, as people push back. So you have folks who work in public health, population health, and have a really difficult job in assessing how best to address public health needs.
Zoe Rothblatt 17:27
Well said. Along similar lines, I learned that you know COVID and handling these public health emergencies or situations is an ongoing learning. And it’s important to use our tactics and strategies from the past in order to formulate a plan for the future. But again, it’s unknown and this is why we have experts to continue learning and we’ll keep talking about it so long as it matters.
Steven Newmark 17:50
We hope that you learn something too. Before we go. I hope that you’ll listen to Zoe on Healthcare Matters where she discussed her work with biosimilars.
Zoe Rothblatt 18:00
Yeah, thanks, Steven. It was really fun to join our colleagues over there and Biosimilars are becoming more popular now in 2023. So definitely have a listen. And thank you, our listeners to 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. Hit that subscribe button and check us out on YouTube. I’m ZOE Rock. We’ll see you next
Narrator 18:28
time. Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 16- Vaccine Update: From the Lag in COVID-19 Bivalent Booster Uptake to a Future RSV Vaccine
The Health Advocates discuss the reasons behind lagging vaccination rates for the COVID-19 bivalent booster in the United States, new vaccines on the horizon for RSV, and strategies that can help improve immunization rates.
“The ability for pharmacists to deliver and provide vaccines is important. It’s much easier to go to a pharmacy. Oftentimes you don’t need an appointment. It’s not as scary, you know, for anything else as going to a doctor’s office. It’s not as intimidating,” says Steven Newmark, Director of Policy at GHLF. “And now they’re also able to provide COVID vaccines, and in some jurisdictions, they’re even able to provide routine immunizations as well. So that definitely helps.”
S5, Ep 16- Vaccine Update: From the Lag in COVID-19 Bivalent Booster Uptake to a Future RSV Vaccine
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
“The ability for pharmacists to deliver and provide vaccines is important. It’s much easier to go to a pharmacy. Oftentimes you don’t need an appointment. It’s not as scary, you know, for anything else as going to a doctor’s office. It’s not as intimidating. And now they’re also able to provide COVID vaccines, and in some jurisdictions, they’re even able to provide routine immunizations as well. So that definitely helps. That definitely helps.”
Steven Newmark 00:34
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 00:43
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:48
Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:54
So Steven, today we’re going to talk about vaccines. Where we stand with COVID vaccination rates, new vaccines on the horizon and just vaccine strategy overall in the United States.
Steven Newmark 01:04
Great. Well, let’s start with the COVID bivalent booster.
Zoe Rothblatt 01:09
Okay, so… you know, thinking about when this was first authorized and available to us, that was around the end of August of 2022. It got the emergency use authorization, and it became available in September, both the Pfizer and Moderna formulations for adults in the U.S., is that right?
Steven Newmark 01:28
That’s correct. In early October 2022, it was authorized for kids 5 to 17. Depending on the vaccine, Pfizer is a 5 to 11, and Moderna is 6 through 17. And in early December, emergency youth authorization was updated to include children as young as 6 months and older.
Zoe Rothblatt 01:44
So from August to December, all the groups got availability to this new booster and where do we stand now is the big question. What are vaccine rates if every U.S. citizen is eligible for this vaccine?
Steven Newmark 01:58
Well, as of today, only 15.3% of Americans have gotten an updated booster. That’s pretty low.
Zoe Rothblatt 02:04
Wow.
Steven Newmark 02:05
15.3% I’ll say it again. Yeah.
Zoe Rothblatt 02:07
That’s really shocking. Actually, I expected it to be a bit higher.
Steven Newmark 02:11
I know particularly with all of the announcements that you see about the importance of getting vaccinated in winter season leading up to winter season in November and December. There were so many announcements: get vaccinated, get vaccinated! It’s still relatively easy to find a vaccination site, it’s still free. So it is definitely surprising to say the least. There is no doubt that it is the easiest way to protect yourself, is by getting the updated bivalent booster, but here we are 15.3% of us have gotten it.
Zoe Rothblatt 02:41
So why is it so low I guess is the biggest question. And I found a study online that could help us understand this low rate of the bivalent booster compared to the other COVID vaccines. So this was published by the Centers for Disease Control and Prevention and their MMWR. So Morbidity and Mortality Weekly Report and it was about reasons for receiving or not receiving the booster. And what’s interesting is that all of the respondents of the survey had at least two doses of the COVID vaccine. So we’re not talking about a group that was against the vaccine. These are people that got their primary series. Okay, so Steven, the study found that the common reasons for not getting a bivalent booster were; number one lack of awareness about eligibility or vaccine availability, and then also over estimations of their own existing immunity. Whether you know, it’d be from previous vaccines or infections. And I thought that was really interesting.
Steven Newmark 03:42
That is really interesting. I mean, I sort of can understand the second one; the idea of overestimating your own immunity: I’m fine, I’ll be okay, I don’t need this. But the lack of awareness about eligibility or vaccine availability is so high, it boggles my mind. And I guess it sort of shows that we live in a little bit of a bubble, because to my mind, I see notices everywhere, they find me every time I go online. Those are the pop up ads about getting boosted. And you know, the idea that people still don’t know that is very surprising.
Zoe Rothblatt 04:13
You know, I went home to New York, New Jersey a few weeks ago, and I did notice a lot more signage about COVID compared to here in Nashville, there’s really nothing. you know, you go into a pharmacy, of course, there are signs about shots available here. But it’s not broadcasted, like we don’t have a subway system, for example. And that’s where a lot of signs are in New York. And it was like coming home and feeling comforted: Oh, yeah. Here’s my bubble. Here’s my people with my messaging. But I guess it’s hard to understand that people don’t know. But I also understand at the same time, because I see that we’re not getting the right messaging out in other parts of the country.
Steven Newmark 04:52
Yeah. So it’s interesting. I’m going to assume that that study did not break it down by geographical region.
Zoe Rothblatt 04:58
I don’t know.
Steven Newmark 04:59
Okay. Well, fair enough. We don’t We certainly don’t have the data for geographic region. But beyond that, what are the thoughts? What thoughts do you have if I may ask Zoe? Putting you on the spot, what thoughts do you have for better educating folks about the availability of these vaccines? The fact that number one, they are available. Number two, you are eligible if you have not gotten a fourth dose, that means you.
Zoe Rothblatt 05:20
Yeah, I think it’s about meeting people where they are.
Steven Newmark 05:23
Right.
Zoe Rothblatt 05:23
So you know, what are people doing everyday, they’re going to the grocery store, they’re dropping their kids off at school, like just… so they’re carpooling, they’re driving on highways, maybe signage there. I think that we have to reconsider where we’re putting messages that we’re meeting people in their everyday life and not creating an extra burden. Because often, like health care can feel like a burden. Especially for people with chronic illness. But I think it’s just about getting the right messaging out in the right places. And interestingly enough, this survey found that for participants that were given more information on eligibility and availability, 67.8% of those that hadn’t gotten their boosters said they would get one. And then a survey one month later showed that 28.6% had actually done so. So you know, giving information works.
Steven Newmark 06:13
Yeah, absolutely. I totally agree with that. I guess, like you said, it’s meeting people where they are. I mean, there was a time when you couldn’t walk three blocks in a major city without seeing a vaccine. Now, you know, to some extent, you have to seek it out a little bit more affirmatively now, by going to a pharmacy. You know, without diving deep into these numbers. I’m less concerned about chronically ill folks who probably have the right information, at least when it comes to knowing the availability of vaccines, and more concerned about the general public. I’m hoping that the chronically ill community is aware of what’s available and their eligibility. But of course, it is important for the chronically ill individuals that a large swath of the population also gets vaccinated to help control the virus and the spread of the virus.
Zoe Rothblatt 06:55
Exactly. I mean, we can dive so deep on that on the concept of herd immunity, that we thought we could get there with COVID but haven’t, but it’s still does matter that those around you are vaccinated. And then Steven, just really quickly, you know, something else that helps with vaccination rates is pharmacists ability to give vaccines and I wanted to give a shout out to our colleagues, Conner and Robert, on Healthcare Matters. They recently did an episode on this topic, on a report looking at the pharmacists’ role in immunization. And overall, they found that since the pandemic, adult patients were getting vaccines at pharmacies, and just general vaccines, and how important of an access point this is.
Steven Newmark 07:35
Yeah, absolutely, the ability for pharmacists to deliver and provide vaccines is important. As you said, it’s much easier to go to a pharmacy. Oftentimes you don’t need an appointment. You can just walk in. It takes a few minutes. It’s not as, it’s not as scary, you know, for anything else as into a doctor’s office, it’s not as intimidating. And it’s been many years throughout the country where pharmacists have been able to provide flu vaccines. And in the United States now, they’re also able to provide COVID vaccines, of course, and in some jurisdictions, they’re even able to provide routine immunizations as well. So that definitely helps. That definitely helps.
Zoe Rothblatt 08:12
You know, thinking about the COVID vaccines in the low rate, you know, experts are looking in strategy going forward about vaccine timelines. And our recording is before this meeting, but the FDA is considering a shift in the COVID strategy. Because currently, people… I actually just learned this. So currently, people want to get fully vaccinated against COVID, you have to first get your primary vaccines. So those first two shots spaced weeks apart, and then two months later, you’re eligible for the booster. So you can’t just walk into a pharmacy and say, I want the COVID booster if you haven’t got the original series, which has a bit of a disadvantage, because that’s updated to combat the current variants. So now the FDA is gathering to discuss whether or not it should just be similar to an annual flu shot where you don’t have to have this previous injections in order to be eligible for the current shot.
Steven Newmark 09:05
Right. And so that would obviously be a big help. So we’ll see… we’ll see what happens with that.
Zoe Rothblatt 09:09
So you know, what does that mean for immunocompromised? Well, there aren’t guidelines yet. This is just the initial thoughts and a meeting. It says that the FDA would recommend two annual doses of the shot and I was just thinking how it’s kind of annoying for people with chronic illness to have to do two shots because you know, myself like many had to hold my regular injections that treat my arthritis and Crohn’s for the COVID shot, so, you know, doing that twice is like a huge setback in health and…
Steven Newmark 09:40
Yeah.
Zoe Rothblatt 09:40
I know for the flu shot, I get a higher dose with my rheumatologist and I guess you know if anyone’s listening from the FDA, we would like a higher dose so we don’t have to go in twice and skip our meds twice because it’s just you know, a lot of considerations on your body.
Steven Newmark 09:56
That’s true. I’m just thinking out loud. I do wonder if some of that happens to be because having two doses is more effective than getting one stronger dose? I don’t know the answer to that. But I’m just positing that as potential, as well as the side effects of a much stronger dose of COVID vaccine versus a stronger dose of flu vaccine could be more impactful, shall we say, in the 24 hours after receiving it. Just a guess, or just a potential answer. But yes, obviously, getting one vaccine is better than getting two, and simpler.
Zoe Rothblatt 10:25
Yeah. So I mean, we’ll wait to hear the guidance. That’s all really good points. And obviously, I just want to do what’s best and gonna be the most helpful, but it’s just a bunch of considerations. Other things experts are grappling with, as this meeting comes up, you know; is it too soon to rely on annual boosters? Is targeting new variants, the most effective way to combat COVID? A bunch of questions like that.
Steven Newmark 10:48
Yeah. So we’ll see what the FDA does. And we’ll see where we go from there. And we’ll report what we learn as always.
Zoe Rothblatt 10:54
So you know, we covered COVID and flu. Now let’s turn to the other… the third link in our tripledemic: RSV.
Steven Newmark 11:02
Well, yeah, there is no vaccine to prevent RSV. There is a medication that can help protect some babies that are at high risk for severe RSV disease. It’s very costly and requires a monthly injection. But there is another medicine in development for infants that would last for an entire season.
Zoe Rothblatt 11:18
That’s great to hear that there’s something in development. And I think there’s also a bunch of vaccines in development for RSV in both elderly and infant populations.
Steven Newmark 11:28
And Moderna and Pfizer, as we know, produced the COVID vaccine in record times, shaving years off the traditional vaccine research and approval process. And now the same expedited timeline is occurring for RSV in both elderly and infant populations.
Zoe Rothblatt 11:41
So the vaccines, I know for infants, it’s focused on pregnant women to protect their infants by transferring antibodies in utero, which is pretty cool. Actually, one of my friends got the COVID vaccine, in I think the third trimester and her baby was born with protections against COVID. So you know, it’s just really cool that we’re able to do that.
Steven Newmark 11:59
Yeah, absolutely. So we’ll see what happens. Hopefully, we’ll get some development on this, particularly for the elderly population and those with young children.
Zoe Rothblatt 12:08
And I haven’t seen any talk about a vaccine for RSV for immunocompromised, but we could probably expect that next, right, since they’re focused on high risk groups. So we’ll definitely keep our community updated.
Steven Newmark 12:20
For sure.
Zoe Rothblatt 12:22
All right, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 12:26
Well, I was definitely surprised when you told me that the top reasons for folks not getting their bivalent boosters is because they’re not aware that they’re eligible, number one. And number two, that they… they’re just not aware about the vaccine generally. It was just surprising. I can’t believe with all of the information that’s out there. It just goes to show you how difficult it is to break through with important information.
Zoe Rothblatt 12:50
For me to. I was so shocked by that 15% have gotten the bivalent booster, especially because it came before the holidays, I really expected that number to be higher.
Steven Newmark 13:02
Well, we hope that you learned something too. And before we go, we definitely want to give a shout out to Healthcare Matters and our colleagues, Conner and Robert. They recently did a deep dive episode into the report on pharmacists role and immunization that we spoke about earlier. You can check out all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 13:19
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, please give us a rating and write a review on Apple Podcasts and check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 13:33
I’m Steven Newmark. We’ll see you next time.
Narrator 13:39
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 15- Clinical Trials and Management of Chronic Pain Conditions: The Importance of Representation
In this episode, our hosts are joined by Dr. Titilola Falasinnu, Assistant Professor at the Stanford School of Medicine, epidemiologist, and pain scientist. Dr. Falasinnu shares about the importance of increasing diversity in lupus clinical trials, her research supporting the experience of patients with chronic pain, and the need to address the unique needs of autoimmune patients.
“We urgently need guidelines for the management of chronic pain… to address the individual needs of the patients from a biopsychosocial perspective, which is where the physical and emotional well-being of the patients are prioritized. So this requires an interdisciplinary approach where multiple specialties work in concert with rheumatologists to address the complex needs of patients with chronic pain conditions,” says Dr. Falasinnu.
Clinical Trials and Management of Chronic Pain Conditions: The Importance of Representation
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Lola Falassinu 00:08
“We also urgently need guidelines for the management of chronic pain in these conditions to address the individual needs of the patients from a biopsychosocial perspective, which is where the physical and emotional well-being of the patients are prioritized. So this requires an interdisciplinary approach where multiple specialties work in concert with rheumatologists to address the complex needs of patients with chronic pain conditions.”
Steven Newmark 00:32
Welcome to The Health Advocates a podcast that breaks down major health news of the week to help me make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:41
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:46
Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:52
Steven, today I’m excited for you to hear the interview I had with Dr. Lola Falasinnu. We talked about the importance of representation of racial minorities, specifically in lupus clinical trials, her research on chronic pain and rheumatic disease, and the value of health advocacy.
Steven Newmark 01:09
Great, I’m excited to listen. But first we have some news updates.
Zoe Rothblatt 01:13
Okay, what’s our first update?
Steven Newmark 01:15
Well, 2022 was a record high year for Affordable Care Act enrollment, also known as Obamacare.
Zoe Rothblatt 01:22
That’s really exciting.
Steven Newmark 01:23
Yeah, open enrollment just ended and close to 16 million people have enrolled in the health insurance platform.
Zoe Rothblatt 01:29
And I think one of the main reasons for that is the increased subsidies, right? These were first put into effect in the Stimulus Bill during COVID, and they were extended in the Inflation Reduction Act, which we did a whole episode on. So it’s really exciting to see it come to life.
Steven Newmark 01:45
Yeah, absolutely. Basically, the subsidies help people pay part or even in some cases, all of their monthly premium.
Zoe Rothblatt 01:51
And we know how costly that can be, you know…
Steven Newmark 01:54
Yup…
Zoe Rothblatt 01:55
But health insurance is so important, especially when you have chronic disease. Like it’s literally a lifeline to getting care. So it’s good to see that Americans are enrolling.
Steven Newmark 02:05
Absolutely. Absolutely. Also following up from our recent episode we did on COVID policy in China, the CDC is expanding airport screening here in the United States.
Zoe Rothblatt 02:14
Yes. So you know, as China moves away from the zero COVID policy, there’s concern over outbreaks, and especially over a new variant and the US is being watchful.
Steven Newmark 02:24
Yeah, as of our recording all passengers two years old and older, originating from China will be required to get a COVID test no more than two days before their departure, regardless of their vaccine status.
Zoe Rothblatt 02:36
Okay, well, it’s good to see the CDC coming out and making some rules. I feel like we haven’t got updated rules from the CDC in a while, so it feels comforting to see that they’re watching this.
Steven Newmark 02:48
Yeah, hopefully it’ll help stem some of the flow and, you know, help us ward off or at least minimize a great influx of some super new variants, but we’ll see. We’ll see what happens.
Zoe Rothblatt 02:58
We’ll see. Alright, Steven. Well, that brings us to the interview portion of our episode. Like I mentioned, I spoke with Dr. Lola Falasinnu. Dr. Falasinnu is assistant professor at Stanford School of Medicine. She’s an epidemiologist, and pain scientist. Her current research interests are focused on developing best practices for adapting electronic health records for use and epidemiological inference in rheumatology with an emphasis on pain, disability and function. Dr. Falasinnu is also an expert in outcomes research and she identifies as Nigerian Canadian and is passionate about increasing the representation of patient and clinician voices impacted by rheumatic diseases in Sub-Saharan Africa. Well, thank you so much for joining us on The Health Advocates. Welcome.
Dr. Lola Falassinu 03:42
Thank you so much.
Zoe Rothblatt 03:43
So why don’t you start by telling me in our audience, you know about yourself, what led you to your research at Stanford, and we talked a little bit in your intro about what you’re working emcompasses now, but maybe you could elaborate for us.
Dr. Lola Falassinu 03:56
So I’m a classically trained epidemiologist. I started off my career after my Master’s Degree in Epidemiology and Public Health Surveillance. I helped coordinate the integration of an electronic HIV registry in health departments in Washington, D.C.. My Doctoral Degree is from the University of British Columbia in Canada, where I also conducted surveillance work at the British Columbia Center for Disease Control. During my PhD I also worked at the World Health Organization where I helped develop policies to guide the adoption of electronic health records in resource limited countries. I also identify as a social epidemiologist. So my PhD involves the development and validation of clinical prediction models and their integration into electronic health records. So during my PhD, I gained an appreciation for sex and gender research, particularly how clinical and structural interventions can best be implemented and adapted to promote health on a population level. And this directly led me to join in Dr. Julia Simard’s Lab at Stanford as a postdoctoral fellow with a broad interest in lupus research. So my current research interests can be condensed into three very broad areas. First, I’m interested in developing tools to study the epidemiology of pain in the general population and also in rheumatology. Second, I’m also interested in explicating the mechanisms of race, ethnic and gender disparities in rheumatology. And finally, I also studied ways to increase ancestral and gender diversity in rheumatology trials.
Zoe Rothblatt 05:25
So going back to your focus, you mentioned that you’re focused on rheumatic disease. Can you talk a little bit about what drew you into this field and why that focus specifically, I know a lot of our listeners live with arthritis so I’m sure they’re excited to hear that you’re doing so much great work in this field.
Dr. Lola Falassinu 05:41
So I am primarily a lupus researcher, but I’m also interested in autoimmune rheumatic diseases. Lupus is a systemic autoimmune disease that disproportionately affects women of childbearing age or women of reproductive age. And lupus has a predilection for racial minorities. So Black, Hispanic, and Asian women have higher risk. My journey to becoming a lupus researcher stems from my experience of losing a very good friend to lupus. During that time, one other friend and a close family member were also diagnosed with lupus. All of them were Black women. So I channeled the helplessness I felt at that time, and this was like a huge inflection point in my life, and I decided to redirect my skills into doing research that will ultimately reduce the pain and suffering in lupus.
Zoe Rothblatt 06:24
I think a lot of our listeners can relate to that and myself as well. I live with two autoimmune diseases and I think whether it’s yourself or someone around you that’s living with these conditions, or, you know, like you mentioned, you lost someone really, you can take that pain and turn it into purpose. So I’m excited to learn from you. Let’s dive into some of the research. You talked about diversity in clinical trials and just diversity in this research in general, why is that important? And what can we do to improve it?
Dr. Lola Falassinu 06:53
So in 2016, we did a review of the representation of racial minorities in lupus trials. We estimated that black patients comprise about 43% of lupus patients in the United States. However, black patients comprise only 14% of trial participants in lupus and black representation actually dropped during the study period from 20% in an earlier time period to 10%, between 2012 and 2017, making this the only race group whose representation had decreased during that time period. So we replicated that study in rheumatoid arthritis and also found under representation of racial minorities and trials. So in that study, we found that black participants represented only 3% of rheumatoid arthritis trials, which was significantly lower than the representation of black people in US census. So the issues of the lack of diversity in clinical trials is not unique to rheumatology. We see it in cancer and cardiovascular disease trials as well. So there are some very important points to consider. For example, the inclusion of race ethnic minorities in trials adds complexity and cost. This includes translation services, transportation and restitution of lost wages. So I usually ask 3 questions when I’m thinking about this line of research. First, are clinicians actively approaching minoritized patients and if we find that they’re not then there are measures and training programs to reduce implicit bias. And the second question usually is: Are minoritized patients refusing to participate in trials when approached, and issues of medical mistrust can be mitigated by having a more diverse trial workforce. And finally, I always ask whether the inclusion or exclusion criteria unintentionally limit the inclusion of race ethnic minorities. For example, black patients have more severe phenotypes of lupus. So are inclusion and exclusion criteria including only milder disease and excluding black patients? And I also think of the following solution. So we need to acknowledge the uniqueness of the lupus patient group. They tend to be very young women who are grappling with their mortality, and they’re also dealing with other life stressors, so they are dealing with schoolwork and relationships. So how can we adapt the traditional trial recruitment framework while acknowledging the challenge of engaging this patient group. First there needs to be very detailed plans to engage women and minoritized patients very early in the development of research questions, so that these questions are relevant to patients across disease severity and subtypes. Second, there needs to be plans to enroll diverse patients in pharmacogenomic and pharmacokinetic studies. And third, within the context of trials, diverse patient perspectives need to be considered in terms of meaningful endpoints and patient reported outcomes. Finally, there needs to be plans to conduct post market surveillance to get a sense of how the drugs are working in different patient groups in which there are minorities and pregnant women. And finally let’s talk logistics. We recently looked at the reasons why black women with lupus enrolled and finish the trial. We found that older women those who are disabled or unemployed, and those with few children in their households, were the most likely to enroll and stay in the trial. In fact, for each additional child in a woman’s household, our odds of staying in the study reduced by 22%. So remember, I mentioned that lupus affects women of reproductive age, or women of childbearing age, life which children can be very busy and schedules of parents may not permit the addition of a clinical trial. I’ve been there. Trials need to improve participation among those with children by making provision for childcare, either on site or through reimbursements with child care services.
Zoe Rothblatt 10:10
From what I’m hearing from you, there are so many stakeholders involved. You started by outlining solutions in the doctor’s office, what physicians can do, then talking about how patients can get involved, then things like post market surveillance, which is a whole other group involved in that. And you know, not only are all the stakeholders, but like you just mentioned, we need to look at the patient as a whole. You can’t just say, okay, here’s a lupus patient, put them in the trial, there are things going on. You mentioned school, work, if there’s a family, and I think that’s so important, because when you live with a chronic disease, that’s just one part of your life. And it may be a really big part, but there’s all these other pieces that you need to advocate for yourself in order to be well, there’s so much more to your health than just the one piece. I’d like to switch gears a little bit and talk about your research on chronic pain. Can you tell us about the study that you worked on and why the findings are important for patients?
Dr. Lola Falassinu 11:04
So people with autoimmune rheumatic diseases such as lupus and rheumatoid arthritis and psoriatic arthritis face many health challenges. This includes unpredictable disease flares and organ damage. Chronic pain often compounds these challenges and often takes many forms including arthritis, headaches and abdominal pain for example. Scientists and clinicians do not fully understand the mechanisms that cause pain and autoimmune rheumatic diseases but we know that pain is one of the most under-addressed complaints in patients with rheumatic diseases. Pain researchers identified about 11 conditions that they named chronic overlapping conditions. These include fibromyalgia, irritable bowel syndrome and chronic low back pain. In the general population, as the number of chronic overlapping pain conditions increases in a patient so does the a likelihood of disability and psychological problems. Chronic overlapping pain conditions are also associated with fatigue, mood, and sleep disturbances. So in this study, our goal was to estimate the burden of chronic overlapping pain conditions in patients with autoimmune rheumatic diseases. So this knowledge can be foundational in developing more effective management options for chronic pain in patients with autoimmune rheumatic diseases and improve their quality of life and function. So we looked at electronic health records of 6,000 patients with five autoimmune rheumatic diseases: psoriatic arthritis, rheumatoid arthritis, lupus, sjogrens syndrome and systemic sclerosis. So between 36 to 62% of patients in the study had chronic overlapping pain condition diagnosis. The most common chronic overlapping pain condition was chronic low back pain followed by migraine and also fibromyalgia. We found higher prevalence among black patients and those using public insurance and also found that patients with one or more chronic overlapping pain condition were more likely to report depression and anxiety and they also had more frequent emergency department visits, surgeries and hospitalizations. So this finding suggests that chronic overlapping pain conditions are strikingly common among patients with rheumatic disease and are associated with lower quality of life and greater health care needs. So what does this mean? We need better chronic pain treatment options. We also urgently need guidelines for the management of chronic pain in these conditions to address the individual needs of the patients from a biopsychosocial perspective, which is where the physical and emotional well being of the patients are prioritized. So this requires an interdisciplinary approach where multiple specialties work in concert with rheumatologists to address the complex needs of patients with chronic pain conditions.
Zoe Rothblatt 13:28
A common thread that I’m seeing in your research is just, you know, looking at the patient as a whole, involving all stakeholders, like it really isn’t on one person to figure this out. As a patient, you’re not alone. There’s other people in your care and I so appreciate that your research is looking at the physical, the mental, the lifestyle, there’s not a lot of research out there that patients can point to and say: “that’s me”, especially when you say that there’s a lack of diversity in clinical trials and just research in general and the fact that you’re paying attention to black voices, so that people can see that research and identify with it is so important. So thank you so much for all that you do. Okay, the last question I want to ask you is what does health and patient advocacy mean to you?
Dr. Lola Falassinu 14:10
So this is such a good question, and it strikes at the heart of the issue of reflexivity. And in research, reflexivity means examining one’s own beliefs, judgments and practices during the research process and how these may influence the research. So I’m a black woman doing research in rheumatology. As I mentioned before, my experience with friends and family living with lupus tends to intentionally or unintentionally show up in the research questions that I pursue. So first, we cannot talk about lupus without talking about sex and the biological significance of sex. However, much less of the conversation is focused on the issue of gender as a constructing risk, morbidity and mortality in lupus and actually in any chronic disease. For example, lupus is an unrecognized leading cause of death in young women in the United States. It is a top five cause of death in 15 to 24 year old Black and Hispanic women. But we do not talk about the psychosocial burden of these young women contemplating their mortality at such a young age. They are often dying of diseases that most people die of at much older age groups. Then there’s the issue of life interruptions. Imagine being a young woman diagnosed with lupus in the middle of say, getting a degree. It’s usually a crescendo of symptoms, and then they finally get a diagnosis. So let’s remember that most people are sickest around the time of diagnosis. So what happens to their dreams of having a partner or children, holding down a job, the achievements that we often take for granted are often out of reach for many lupus patients and this is the same in many chronic diseases, too. And then there’s the issue of social isolation. There are gender disparities in the rate of partner abandonment in chronic disease. For example, in multiple sclerosis, there’s a six fold increase in the risk of divorce after diagnosis when a female spouse is afflicted with multiple sclerosis to when if their spouse is afflicted with multiple sclerosis. So we need longitudinal assessments of social transitions in lupus patients. So how are individual social trajectories unfolding in response to chronic disease to lupus burden for example. So we need interventions to improve resilience coping and medication adherence in patients with lupus. So these are usually like the questions that guide my research priorities.
Zoe Rothblatt 16:25
Well, thank you so much for all you do and for sharing with us today. We really appreciate your time.
Dr. Lola Falassinu 16:31
Thank you for having me.
Steven Newmark 16:33
Yeah, thank you, Dr. Falasinnu and thank you, Zoe. That was a great interview.
Zoe Rothblatt 16:37
Thanks, Steven. I’m so glad you enjoyed it. And may I ask what did you learn today?
Steven Newmark 16:41
Well, you know, I learned… I thought it was fascinating to hear from somebody who has the disciplines of pain management and epidemiology and the interplay between the two. So it was great to hear that interview with Dr. Falasinnu.
Zoe Rothblatt 16:52
Agreed. It was so important to hear from her about, you know, the patient experience and really highlighting that minority groups in order to provide the right care.
Steven Newmark 17:03
Yeah, we hope that you learned something too. And before we go, we definitely want to give a shout out to our colleague Joe Coe who hosts Talking Head Pain where he speaks with people living with migraine and headache about their journey. You can check out all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 17:18
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, please give us a rating and write a positive review on Apple Podcasts. Subscribe and check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 17:34
I’m Steven Newmark. We’ll see you next time.
Narrator 17:39
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 14- RSV, Flu, and COVID: A Look at Today’s “Tripledemic”
As we start the new year with a “tripledemic” from the combined threat of RSV, flu, and COVID-19, there’s both a sense of hope and concern. There’s hope that flu and RSV surges are now declining after a peak earlier in the season and there’s concern among the immunocompromised community that the general public has moved on and are no longer taking COVID-19 safety precautions.
“It’s January. January is a time when viruses tend to promulgate. We’re certainly in the midst of another wave when it comes to COVID, and if you want to stay safe, you’re going to have to keep a mask on. A nice, good, tight-fitting mask, whenever you’re in public,” says Steven Newmark, Director of Policy at GHLF. “And, unfortunately, there aren’t too many other ways to mitigate [risk] in our society.”
RSV, Flu, and COVID: A Look at Today's “Tripledemic”
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:06
“It’s January. January is a time when viruses tend to promulgate. We’re certainly in the midst of another wave when it comes to COVID, and if you want to stay safe, you’re going to have to keep a mask on. A nice, good, tight-fitting mask, whenever you’re in public. And unfortunately, there aren’t too many other ways to mitigate in our society.
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 00:39
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. Today, we will talk about the state of the pandemic and other respiratory diseases going around as well as what to expect for Health Policy in 2023.
Zoe Rothblatt 00:59
2023, that’s right! Happy New Year Steven!
Steven Newmark 01:02
Happy New Year! We hope all of our listeners had a restful holiday. How was your holiday Zoe?
Zoe Rothblatt 01:07
You know, it was really great. In the beginning, I went on a mini road trip. So I saw a bunch of southern cities. It was so fun. Unfortunately, on that road trip, I did catch COVID…
Steven Newmark 01:18
Who invited that guest along for the trip, man?
Zoe Rothblatt 01:21
I know it was a nasty guest. It was pretty rough. As our listeners know, I live with two chronic diseases. So you know, it definitely flared those up. I was in contact with my doctor. But I think you can hear my voice now I’m doing a lot better. So I’m glad to be here recording with you and able to just, you know, focus on my health and good things for the new year.
Steven Newmark 01:41
Well, that’s good to hear. It’s not totally surprising that you caught COVID because it’s still with us, and it’s still with us in a pretty robust fashion. And today we’re going to talk about the latest on what’s happening with COVID-19, the flu, and RSV in the United States, otherwise known as the “tripledemic”, or the “tri-demic”, or the “triple pandemic”.
Zoe Rothblatt 02:01
Don’t threaten me with that, Steven. I don’t think our emotional health can handle a “tripledemic”.
Steven Newmark 02:06
Well, I don’t know what to tell you, welcome to 2023.
Zoe Rothblatt 02:09
Right. It’s not a fun winter. So you know, let’s dive in. What is going on with all these respiratory conditions?
Steven Newmark 02:16
Yeah, well, sorry to say, it is looking a little rough out there. There’s a high number of influenza like illnesses, sometimes shorthand for that is IOI. Those are illnesses that deal with fever, cough and/or sore throat, that are reported at doctors offices, are looking high as of January 2023.
Zoe Rothblatt 02:33
And we know that respiratory season started early. And you know, a lot of that is due because we’ve all been quarantined. And the flu hasn’t been around as much as the past two years because we were taking all the COVID precautions and now as society moves on and the mask comes off and you know, people are just going about their everyday life without distancing and protections. We’re seeing the rising cases. But you know, it’s also on the descent, there is some hope although it’s too early to celebrate because we may see humps as we did in you know, pre pandemic years. And like we see with COVID there’s different waves of it, but it seems like this high wave is on the descent.
Steven Newmark 03:10
Yeah, so you know, let’s break it down disease specific from the “tripledemic”, if you will.
Zoe Rothblatt 03:14
Yeah. Shall we start with RSV, Steven? You’re a parent so I know that this has probably been top of mind for you especially.
Steven Newmark 03:22
Yeah, that’s true. I mean, luckily I don’t have children under the age of five, which is where you really start to look for RSV. RSV, by the way stands for respiratory syncytial virus infection, very difficult to say and also not fun when you have it. But the good news for those following RSV is that cases are actually coming down pretty heavily. So this is good news for older adults as well as parents of children under the age of five.
Zoe Rothblatt 03:45
That’s really good news. You know, we’d never want anyone to get sick, but it’s especially scary when it’s young children. So it’s really good to hear that the hospitalizations are going down and the peak is going down.
Steven Newmark 03:56
Yeah, the peak really was really mid-November of 2022. Hospitalizations, they just blew through the pre pandemic years, you know, and they reached an all time high of 70 kids hospitalized per 100,000 infections. Historically, peaks have been from anywhere between 26 and 52 kids per 100,000 infections. So it was much higher than that. But thankfully, the numbers are really starting to come down
Zoe Rothblatt 04:18
And what’s going on with the flu. I mean, we’ve been hearing a lot about the flu this year.
Steven Newmark 04:22
Yeah, similar to RSV, the flu came on early this year and it appears to have peaked early as well though we won’t know until of course the end of the season to see if it makes a comeback, but trends are going down, not as quickly as RSV but by all metrics, testing positivity rate positive numbers in nursing homes, hospitalizations, are all showing movement in the good direction.
Zoe Rothblatt 04:45
That’s good to hear. Especially you know the difference I think with COVID I know we’re gonna get on a little bit but we have the at home test but for flu I don’t think there’s an at home test. So these numbers should be pretty accurate because it’s people going in to get tested.
Steven Newmark 04:59
Correct. So like I said, the numbers overall are going down. Another thing that’s somewhat positive, the severity of the flu this year is not particularly high. They are on track for a mediocre season when it comes to hospitalizations. So that’s a good thing as well, of course, and not to minimize what is happening out there. We’ve already lost 13,000 Americans to the flu this season. 61 of those were children. So I don’t want to minimize what’s going on with the flu. But just to be positive, we are moving in a positive direction.
Zoe Rothblatt 05:30
I was about to say that, yeah, it’s helpful to hear these numbers. But of course, we can’t minimize the suffering, especially for our community with chronic disease. Sometimes it hits a little bit harder. And, you know, as someone who was just sick, I’m like, we can’t minimize this at all. So stay safe out there friends. Definitely.
Steven Newmark 05:50
Yeah. And I should mention that in the Southern Hemisphere, we saw during the strain of flu, we saw two waves. So there’s a high possibility, if you will, that a second strain could be coming our way.
Zoe Rothblatt 06:02
Because we in the U.S. currently have that influenza A strain, right? And then the other one was B, so we could be seeing that.
Steven Newmark 06:10
Correct. So maybe breathe a half a sigh of relief, not a full sigh of relief, if you will?
Zoe Rothblatt 06:14
Yeah, well, it’s important to know about this. And we’re lucky enough that we get that information from the southern hemisphere and have a little bit of advantage. So you know, the scientists, epidemiologists can be planning and we get the right public health messages out. I do think that so much of advocating for yourself as looking at this information and being well informed so you can make the right decisions to stay healthy throughout this season. Because as we’re talking about, there’s a bunch of stuff going around that we need to be on the lookout for.
Steven Newmark 06:43
Definitely. Well, and then there’s the big one: COVID.
Zoe Rothblatt 06:48
Yeah, it’s hard to believe this is what the third year, the fourth year, I can’t even keep track anymore. It’s still very much in our everyday lives going into 2023.
Steven Newmark 06:59
Yeah, as we enter 2023, I guess, technically the fourth calendar year, if you will, of us dealing with COVID. For some good news, we did get through all 2022 an entire year without a new variant of concern. In other words, Omicron continue to mutate without a variant coming from out of left field. So that’s good.
Zoe Rothblatt 07:17
Oh, right. Because before we are seeing, you know, Delta then Omicron, now these are all just in the Omicron family. And we do have that bivalent booster focused on the Omicron family. So that is good news. But I know it’s good news, always comes bad news. What do you have for us next, Steven?
Steven Newmark 07:35
Well, well, the bad news is that the Omicron subvariants are doing plenty of damage on their own. This is especially the case when coupled with the holidays, you know, the changing behaviors and a lot of socialization without masks. So we’re starting to see an uptick. And the current viral culprit right now is known as the subvariant XBB.1.5.
Zoe Rothblatt 07:57
That sounds threatening.
Steven Newmark 07:58
Yeah, it’s pretty bad. Pretty, “pretty badass”, if you will. It’s definitely like something cool in a science fiction movie, I suppose. The World Health Organization is currently conducting a risk assessment. So hopefully that will come out in a short period of time. But it definitely has a viral advantage here to the United States. It started in the northeast, but it’s now quickly spreading to the south and will dominate pretty much the entire country very shortly with the peak expected sometime in February.
Zoe Rothblatt 08:23
I caught it in the south. So it’s definitely there. Granted I don’t know what variant I had.
Steven Newmark 08:29
Right. Of course.
Zoe Rothblatt 08:30
I’m assuming it’s one of the newer ones, because it’s accounting for a lot of the cases. But it’s definitely moving through the country, which is, you know, like you said, we had the holiday travel we saw after Thanksgiving that cases spiked. And now it’s been a week or whatever, since Christmas, New Year’s, Hanukkah, whatever you celebrated. So…
Steven Newmark 08:50
Yeah.
Zoe Rothblatt 08:50
We are seeing those peaks. And we’re you, just said, we’re expecting another peak in February. So we really do have to stay vigilant this time of year and I became a little more relaxed with my restrictions. I’ll be totally honest. And it was rough. And I’m definitely going to be more careful moving forward.
Steven Newmark 09:08
No, absolutely. I mean, look, I think the key takeaway is, it’s January, January is a time when viruses tend to propagate, we’re certainly in the midst of another wave on when it comes to COVID. And if you want to stay safe, you’re going to have to keep a mask on a nice, good, tight fitting mask whenever you’re in public. And unfortunately, there aren’t too many other ways to mitigate in our society.
Zoe Rothblatt 09:31
Also, unfortunately, a lot of people have moved on and it sort of feels like every man for himself at this point. I know our chronic disease community like really is there for each other and it’s amazing to have that support, but it’s not as strong with the general public. So you know, as we’re in this new year, and people continue to get over COVID I just want to say that you know, we’re here for you and we understand you and we’re going to keep talking about and providing you know, tips and health advocacy for you know, fighting this virus together?
Steven Newmark 10:01
No, absolutely, yeah. That’s what I was referring to when I said there aren’t too many ways of mitigating in our society generally other than wearing the mask yourself. So, you know, each person for themselves out there. But we should talk about some positives. You know, I think it’s important to note that hospitalizations are very different today than they used to be, you know, indications of severe hospitalization, like the number of patients in the ICU are not increasing. This is a very good sign that the severity of Omicron and these mutations may not have changed or may not be changing for the worse. So it’s early, but that’s good. And the second thing, as we say all the time, vaccines work. People that were vaccinated with the bivalent booster have, according to a latest study an 18.6 times lower risk of dying from COVID, than unvaccinated people. The risk of infection is also three times lower when folks are vaccinated. This is even the case for folks with weaker immune systems, like those of us who are chronically ill, and those who are over 80 years old. So the vaccines work, the vaccines help, and we have a bivalent booster that’s specifically targeted for the Omicron variant.
Zoe Rothblatt 11:01
Yes, although I mean, it’s great, we have the vaccines, I don’t want to diminish that, it’s just one thing top of mind for our community is that with the newer subvariants that, you know, the monoclonal antibodies, including Evusheld doesn’t work as well. So you know, it’s still something is better than nothing, it’s what physicians and experts are saying, it just may not be as effective as it once was. Although we do have the treatment Paxlovid which still works. You know, talk to your doctor about what’s right for you. But I would say the best thing is, after just having had COVID, I had been in contact with my doctor before about you know what would happen if I do get it and I had a plan, which made me feel the best about the situation I was in, so I would say that’s my top piece of advice when you hear about these things like Evusheld and Paxlovid and the vaccines, definitely talk to your doctor now, before anything, so you guys can plan together.
Steven Newmark 11:53
Absolutely. I think what you said just to tease it out, is make a plan with your doctor. Be ready.
Zoe Rothblatt 11:58
For sure. So okay, so what’s the bottom line? RSV and Flu trends are showing welcoming signs. But you know, COVID is now taking over the impact of this new subvariant and the height of the COVID winter wave is unknown, but vulnerable people are in a tough spot as they have been, as we have been.
Steven Newmark 12:18
Look, there are a lot of people out there getting sick, and there are still plenty of winter season left. But you know, as a listener of this podcast, you know what to do, make a plan with your doctor, make a plan with your family, make a plan for yourself and be ready.
Zoe Rothblatt 12:31
So Steven, switching gears really quick, I wanted to ask about what we could expect for Health Policy in 2023. We have a new Congress. I know we talked a lot about the election when that was going on. And I wanted to hear your thoughts on this new Congress.
Steven Newmark 12:46
Sure. So as you said, we do have a new Congress. The Senate is somewhat unchanged, there’s a one more democratic seat than there was in the previous Senate, so it’s still controlled by Democrats. However, over on the House side, the Republicans have taken over. And in fact, they even have a speaker of the house, which last week, we weren’t so sure that would happen, but it has happened. So things are up and functioning such as they are over in the house. However, with a divided government, and particularly a divided Congress, it’s going to be very difficult to get things done.
Zoe Rothblatt 13:15
So you know, let’s focus on some areas relevant to our community, we might have talked about them in the past, but going into 2023, we’re still going to be focused on the Safe Step Act, which is a federal piece of legislation that helps protect patients from step therapy, the insurance practice that requires you to try and fail medications before you can get the one prescribed by your doctor. So you know, we’re just continuing to advocate for this and hope for passage. What do you think is the likelihood of something like this passing this year?
Steven Newmark 13:45
Yeah, that’s a great question. I would think of it less in terms of this year or more in terms of this Congress, which is a two year project. And I’ll just say, you know, first and foremost, the odds of any grand legislation in healthcare, or really any area is essentially unlikely because it’s a divided Congress. So the odds of coming together to get something that both Republicans and Democrats are behind, that is somewhat radical, it’s going to be very rare. Now, in our world, you mentioned the safe step act. This has been introduced in the prior three congresses. So for the past six years, it’s been part of the legislative process. And each time it gets introduced, we get more and more sponsors more and more senators on the Senate side, and Congress members on the House side signing on to it. It’s bipartisan. It’s got bipartisan support. And like I said, it continues to grow in support. So at some point, you know, we’re hoping that it will reach the tipping point and knock on wood, fingers crossed, whatever you might want to do. We are hopeful that this will be the Congress where it happens. Congress, I seem to think of it in terms of two years, but really, it’s more like a year and a few months because once we get into mid 2024, it becomes presidential election season. So that’s another time period when very little is likely to get accomplished. But yeah, Safe Step Act is a top priority for GHLF and other patient groups as well. So we hope to work with our coalition partners and with members like you to help push for the passage.
Zoe Rothblatt 15:08
Definitely, um, you know, just thinking about some other top line items. What about COVID? We talked about this, the election would affect COVID funding. What are you thinking now, given the new Congress?
Steven Newmark 15:19
You know, I would say Republicans, particularly Republicans in the House are less than enthusiastic about continuing funding for COVID policies generally, for continuing any policies that relate to protection measures when dealing with COVID. So I think it’s very unlikely they will see more funding more funding from the federal government to trickle down to state and local governments to assist with COVID. That being said, the Biden administration did just authorize, through existing funds, for more free tests per household. So that’s something you should definitely take advantage of, you can get that through usps.gov, or through vaccines.gov. So you know, that’s some minor good news for now. But it’s unlikely that some of the funding will continue. And when I say funding, I’m talking about the ability to get vaccines for free, the ability to obtain some free PCR tests and things of that nature.
Zoe Rothblatt 16:12
You know, it’s interesting, you brought up the free COVID test, I had a mental note to say it. So thank you for the reminder. I took advantage of that, and mine came within a week. So definitely a really great option.
Steven Newmark 16:22
And look, they’re still extremely helpful. I had a family gathering this past weekend. And it’s very comforting to know that we all have plenty of tests, so we can each test without worrying about diminishing our supply, and then we’re able to gather and feel comfortable about it. So it’s great.
Zoe Rothblatt 16:37
And then around the states, we have a bunch of stuff going on. And I wanted to encourage our listeners to get involved with us, you could go to 50statenetwork.org or email us at [email protected]. You know, we have copay accumulator legislation, which helps patients count their money that they paid for their prescriptions, and you know, coupon codes they use or assistance that counts towards the medication and their deductible. And, okay… this is a little bit of a list so bear with me, I just want our our friends in all states to hear where we’re focused. There is Florida, Texas, Pennsylvania, Colorado, Massachusetts, Michigan, Ohio, South Carolina, Utah, and Wisconsin. And I say that with such joy, because it is amazing that, you know, we have so many states focused on this type of legislation to help our patients get affordable access to treatment.
Steven Newmark 17:30
Yeah, no, it’s great working through the states. It’s where a lot of the legislation can be found, particularly with some of the gridlock in Washington that we’re likely to see. So we at GHLF have always been focused on the states through our 50-state network. And we will be hyper focused on the states that you mentioned and particular legislation that you had just brought up.
Zoe Rothblatt 17:49
And then Steven, you know, we’re focused on a few more issues around the states. The first one is non-medical switching, which helps give patients protections to get their medication for the full year and avoid being unnecessarily switched. And we’ll focus there in Texas and Pennsylvania, as well as in Washington, some pharmacy benefit manager reform bills to help increase transparency there. So lots of exciting stuff. And I really encourage our listeners get involved, whether or not you’ve been affected by this issues, if you’re someone living with chronic disease, you can speak to you know how staying on your medication has helped you feel good. I certainly have shared my story just generally, and it really helps when legislators can hear the personal stories of the community.
Steven Newmark 18:33
Yeah, no, absolutely. And as I mentioned, we at GHLF look forward to getting active in the states in 2023.
Zoe Rothblatt 18:42
Okay, Steven, I think that brings us to the close of our show. What did you learn today?
Steven Newmark 18:46
Well, I learned from your unfortunate personal experience that you know, no matter how vigilant you are, COVID can still break through. So you know, it’s unfortunate, but as we spoke about, always be prepared, be ready, be ready with a plan.
Zoe Rothblatt 18:59
And I was comforted by you to hear about, you know, the numbers and hospitalizations going down, especially for RSV. And it’s just really helpful to, you know, put some facts to the worry.
Steven Newmark 19:12
Well, we hope that you learn something too. And before we go, we definitely want to give a shout-out to our colleague, Daniel Hernandez, who’s got a great program called Let’s Get Personal, and it’s focused on rheumatoid arthritis patient journey, so please check it out.
Zoe Rothblatt 19:25
Yeah, that’s a great listen. I highly recommend checking out Let’s Get Personal and you can listen to all of our podcasts at ghlf.org/listen. 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. Also, don’t forget to check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 19:52
I’m Steven Newmark. We’ll see you next time.
Narrator 19:58
Be inspired, supported and empowered, this is the Global Healthy Living Foundation Podcast Network
S5, Ep 13- Health Policy and Advocacy Impact: A Look Back at 2022 and What’s Coming in 2023
As 2022 comes to an end, our hosts reflect on yet another eventful year for health policy and advocacy work. Seven bills that GHLF advocated for were passed at the state level, including copay accumulator bills, step therapy bills, and a non-medical switching bill. Patients also received protections against surprise billing.
Our hosts discuss their advocacy work as well as the advancements for patients and issues covered this year on The Health Advocates. “We talked a lot about COVID this year and also other infectious diseases such as Mpox, polio…. We talked about vaccine hesitancy and how it is affecting this pandemic as well as winter flu season and how we’ve said many times throughout 2022: It’s too soon to be totally over with COVID,” says Steven Newmark, Director of Policy at GHLF. The Health Advocates also offer their thoughts on what’s to come for health policy and advocacy in 2023.
“Because they’ve been sort of bottled up for so long, COVID is on the verge of exploding in China. They are already reporting very high numbers, nearly 40,000 new infections per day,” says Steven Newmark, Director of Policy at GHLF.
Health Policy and Advocacy Impact: A Look Back at 2022 and What’s Coming in 2023
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
“We talked a lot about COVID this year and also other infectious diseases such as mpox, polio… We talked about how the mRNA technology helps bring about new treatments for care. We talked about vaccine hesitancy and how it is affecting this pandemic as well as winter flu season and how we’ve said many, many times throughout 2022, it’s too soon to be totally over with COVID.”
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 00:42
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:47
Our goal is to help you understand what’s happening in the health care 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 01:00
We sure do. As a reminder to our listeners, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout-out to Talking Head Pain hosted by Joe Coe. If you live with headaches and migraine or know someone who does this podcast covers a wide range of experiences when it comes to living with this neurological disorder.
Steven Newmark 01:22
Definitely. It’s a great show and I definitely recommend it.
Zoe Rothblatt 01:25
Okay, let’s start with a listener comment. Ready?
Steven Newmark 01:27
I’m ready.
Zoe Rothblatt 01:27
This one is from Nathan P. who wrote: “Thanks for putting on such a great podcast.”
Steven Newmark 01:32
Well, thank you Nathan for listening to such a great podcast.
Zoe Rothblatt 01:35
Yeah, thanks, Nathan.
Steven Newmark 01:37
Today we’ll be talking about all the advancements in advocacy and policy we saw in 2022. And some top pieces of news from the year.
Zoe Rothblatt 01:44
This is our last episode of the year, kind of bittersweet.
Steven Newmark 01:48
So sad.
Zoe Rothblatt 01:49
You know, we’ll be back in the new year to keep providing content to you all. And I just want to say we’re so grateful to all of our listeners.
Steven Newmark 01:56
Absolutely. 2020 sucked, 2021 sort of sucked, 2022 big improvement!
Zoe Rothblatt 02:02
Well, speaking about improvement, we had seven bills around the states passed that we advocated for.
Steven Newmark 02:08
Yes!
Zoe Rothblatt 02:08
That’s pretty big, especially in an election year.
Steven Newmark 02:11
Absolutely. We had four copay accumulator bills in New York, Washington, Delaware, Maine that passed, why don’t you explain what these bills do actually?
Zoe Rothblatt 02:20
Yeah so, briefly explained, you know, we can go on and on about these bills but just, you know, a quick one sentence if you know, you want to tell your friends and family what’s going on. So these bills give protections so that any payment made on your behalf for a medication, like let’s say you use a copay card to pay for your copay, that money will count towards your deductible.
Steven Newmark 02:40
We also had a nice non medical switching bill that passed in New York, why don’t you explain what that means Zoe?
Zoe Rothblatt 02:45
So this law will prohibit health insurance from switching stable patients off their current medications to another medication. You know the scenario would be here: you’re just going about taking your medication, refilling it as usual and all of a sudden, one day in the middle of the plan year you get a notice saying: “Hey, we actually think you should take this medication instead.” You’re obviously upset because you’re doing well. You want to take what your doctor prescribed, and you’re worried that the other one won’t be effective. So this law ultimately stops that process.
Steven Newmark 03:14
Great. We also had 2 step therapy bills that passed in California and Massachusetts. Why don’t you explain what those do Zoe?
Zoe Rothblatt 03:22
I could have bet on that question. So great news about the two step therapy bills, especially in California, because California actually had a step therapy bill passed a long time ago, so this helped bring in some of the newer protections that advocates have been fighting for, so it strengthened the old bill. So step therapy bills, what it does is it provides protections against the insurance practice of requiring you to try and fail on a different medication before you could have the one originally prescribed. So basically, your doctor says I want you to take ‘x’ medication, insurance says no, you have to take ‘y’ and prove that it’s not effective before you could take ‘x’ and this law provides an exemptions process so you don’t have to do that.
Steven Newmark 04:02
Excellent work. We also got a few protections for surprise billing.
Zoe Rothblatt 04:06
Oh Yeah, this happened in the new year. I almost forgot about that.
Steven Newmark 04:10
If you go back way back when to episode two of season three from our show, we discussed that surprise billing is now illegal under the No Surprises Act.
Zoe Rothblatt 04:19
And surprise billing is literally what the name suggests. It’s just an unexpected bill but it’s usually for a substantial amount of money because, like you accidentally got care from a provider out of network, and the insurance company doesn’t cover services from that provider. Like, I’ve heard stories about: “Oh, the anesthesiologist wasn’t in the plan, and I got this huge bill.” So this is protections against that happening.
Steven Newmark 04:43
Yeah, so some great pieces of legislation around the country, and I would say a big thank you to our patients who helped us get these pieces of legislation passed.
Zoe Rothblatt 04:53
Yeah, we cannot do this without patient stories. Legislators can look at numbers in the bill all day, but hearing the voice from the person impacted ultimately really helps sway legislators to have these discussions with their peers and get stuff passed.
Steven Newmark 05:10
Absolutely. Some other highlights of 2022. We talked a lot about COVID this year, and also other infectious diseases such as mpox, polio… We talked about the idea of getting free tests from the government, and now the elimination of those free tests. What it means to live during an endemic and a pandemic. How the mRNA technology helps bring about new treatments for care. We talked about vaccine hesitancy and how it is affecting this pandemic, as well as winter flu season, and how we’ve said many, many times throughout 2022: it’s too soon to be totally over with COVID.
Zoe Rothblatt 05:45
Agreed. You know, it’s interesting when you parse out these different topics we’ve discussed because COVID can often become a blur and feel like we’re having the same conversation over and over again. But what stood out to me there, you just talked about the mRNA technology that is huge that that can help, you know, bring about new treatments for patients. Also free tests. I hope maybe that program gets mimicked in other health areas. I think there’s a lot to learn from what’s been going on.
Steven Newmark 06:12
Yeah, absolutely. We also met with many patient advocates on the air. I had some great discussions. I’m not going to go through all of them. I will just give a quick shout-out… oh, gosh, too many to name, but I thought it was really exciting to talk to Kellie Cusack who uses her background and interest in fashion to be a disability advocate. I found that to be a great conversation. Any conversations that stuck out for you in 2022?
Zoe Rothblatt 06:35
Yeah, you know, what really stands out was over the summer, we talked a lot about methotrexate access. When patients around the country were having trouble getting their prescriptions filled, or ultimately just worried about losing access to their medication. And we spoke to one of my friends Cheryl Crow, Arthritis Life Cheryl. She’s an occupational therapist, and rheumatoid arthritis patient, and she was following closely what was happening on social media. So it was cool to hear from her. And we also spoke to Dr. Donald Miller, who was a pharmacist, and we got to hear from his perspective about this access issue and what role pharmacists play in helping patients get medications.
Steven Newmark 07:13
Yeah, that was fascinating. We also had the good fortune to attend and report back on many conferences as well as advocacy days that we participated in.
Zoe Rothblatt 07:23
So yeah, what’s like one takeaway from each of these?
Steven Newmark 07:27
Yeah, so I had the good fortune of being able to attend the EULAR conference. That’s the European League Against Rheumatism conference. And one takeaway from that was that chronic pain was being called its own disease.
Zoe Rothblatt 07:40
Oh, yeah, that was really cool, and so important. So many people live with chronic pain and undiagnosed chronic pain so to hear it being recognized as its own could really lead to some advancements.
Steven Newmark 07:51
Yeah.
Zoe Rothblatt 07:51
You know, the next one, which just happened recently, ACR, the American College of Rheumatology, I attended both as GHLF staff, but also as a patient presenter and my main takeaway is just how important it is to insert the patient voice into these conversations that are just outside the doctor’s office and give doctors and patients the ability to communicate with each other.
Steven Newmark 08:14
Yeah, and we also did a bunch of advocacy on days virtually. And I think that the main takeaway from those various advocacy days around the states and in Washington DC, is that advocacy can happen over zoom and be effective. So it was great that we were able to do that this year.
Zoe Rothblatt 08:30
Totally agreed. And I’ve been a part of a few zoom meetings, and whether you’re with a legislator or their staff, I really feel like you do have that one-on-one time with them. Sometimes in person it can be a little chaotic and hard to feel that closeness, but I’ve actually really felt it translated well on Zoom. And then the other thing I’d say is, from the Advocacy Days, we’ve learned that we really need more representation and advocacy. It’s often the same group of people showing up and we need more diverse voices. And you know, we’re definitely trying to find those diverse voices and help them come along, because it’s really important to hear the stories of people.
Steven Newmark 09:10
So true… so true. So we did a lot in 2022 We’ve had some good successes. And of course, there’s still more to do. So let’s give a little preview of what’s on the horizon in 2023.
Zoe Rothblatt 09:21
Well, the COVID emergency is expected to renew so I’m sure we’ll keep talking about it and you know, regardless of its emergency status, so long as it’s affecting our community who lives with chronic disease, we’ll definitely keep talking about it.
Steven Newmark 09:37
Yeah, we will continue to advocate of course to get more bills passed and ensure patients have access to care and medications without obstacles.
Zoe Rothblatt 09:44
So key and just so frustrating that year after year, this has to be a priority, like I wish we could just get it all done and patients could have access and we could live in a perfect world but alas here we are. Keep advocating. And you know, ultimately also more coverage of our conferences and Advocacy Days and of course, bringing along wonderful guests.
Steven Newmark 10:05
Yeah. Well, before we close, I just want to say to you Zoe how great it’s been to do this podcast week after week with you. It’s been a real pleasure in 2022. I’m looking forward to continuing in 2023. And I hope that you will have some restful time as we get to the end of this year and celebrate the holidays with your family and to all of our listeners, Merry Christmas, happy Hanukkah, happy Kwanzaa, whatever it is that you celebrate, Happy New Year. If you celebrate nothing else, at least celebrate yourself!
Zoe Rothblatt 10:31
That’s a great message. Thank you so much, Steven. I’ve enjoyed doing this with you as well. And I’m just so grateful for our listeners that you know, they’re here tuning into us and we’re able to have this time and put a show on for everyone. And yes, Happy Celebrations everyone! We hope you have a relaxing time off. We’ll see you in the new year.
Zoe Rothblatt 10:51
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, please give us a rating and write a review on Apple podcasts and check us out on YouTube. I’m Zoe Rothblatt.
Narrator 11:05
I’m Steven Newmark. We’ll see you next year. Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
EXTRA Part 2- Non-Radiographic Axial Spondyloarthritis: A Conversation with Policy Expert Amanda Ledford and Patient Advocate Ricky White
In the second part of a two-part episode dedicated to non-radiographic axial spondyloarthritis (non-rad AxSpA), our hosts are joined by Amanda Ledford, Director of Policy at UCB, and patient advocate Ricky White, who lives with non-rad AxSpA. Amanda and Ricky discuss the advocacy efforts around helping patients receive a diagnosis and how policy and advocacy play a role in helping patients access affordable treatments.
“We’re really working to remove barriers to the providers’ ability to prescribe the most appropriate therapy to their patients. We feel strongly that decisions about the most appropriate treatment should be made by the health care provider and the patient rather than the insurance company,” says Amanda.
EXTRA Part 2- Non-Radiographic Axial Spondyloarthritis: A Conversation with Policy Expert Amanda Ledford and Patient Advocate Ricky White
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Amanda Ledford 00:06
“We’re really working to remove barriers to the providers’ ability to prescribe the most appropriate therapy to their patients. We feel strongly that decisions about the most appropriate treatment should be made by the health care provider and the patient rather than the insurance company.”
Steven Newmark 00:25
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:34
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:39
Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:45
So Steven, we’re conducting part two of our episodes on non-radiographic axial spondyloarthritis. You know, what it is, how we’re dealing with it and what medical professionals are doing to help.
Steven Newmark 00:57
In our first episode, we talked to Ricky White about the struggles he’s gone through to get a diagnosis and feel better. We learned from Ricky how community is key in the non-rad axSpA journey as community brings support and information.
Zoe Rothblatt 01:09
We also heard from Dr. Jeff Stark who talked about the advancements in non-rad axSpA. I found it really interesting when Dr. Stark mentioned how non-rad axspa has traditionally been under recognized and undertreated but that there’s many efforts going on to improve diagnosis.
Steven Newmark 01:25
Yeah, and to learn even more today we will hear from Ricky and we’re also joined by Amanda Ledford, Director of Policy at UCB on how policy and advocacy play a role in helping patients and some of the challenges and advocacy around helping get patients diagnosed.
Zoe Rothblatt 01:41
So let’s introduce our guests. We’re joined today by Ricky White and Amanda Ledford. You all remember Ricky from our first episode on non-rad axSpA and he joins us again for part two. Amanda Ledford also joins us from UCB where she is Director of Policy. Amanda leads a host of public policy initiatives and strategies focused on improving access and removing barriers to care for patients, especially for those living with chronic and severe diseases. UCB and GHLF have worked together on several policy issues so we’re really excited to have Amanda here today. Welcome again, Ricky and welcome Amanda.
Ricky White 02:17
Thanks for having me.
Amanda Ledford 02:18
Thank you for having me today. I’m really excited to be here and join you and Ricky.
Zoe Rothblatt 02:22
Great. So let’s get started. Amanda, I’ll direct the first question to you. Let’s start talking about diagnosis codes called ICD-10 codes. I know there was a big effort in order to get a code for non-rad axSpA. Can you talk to us about that process? And then I’ll turn it over to Ricky after, to hear his thoughts.
Amanda Ledford 02:41
Thanks, Zoe. I’m happy to talk about ICD-10 codes. As you heard from my colleague Dr. Stark in the previous episode, the UCB team began hearing from patient and provider groups that there’s a need for an ICD-10 or diagnosis code for nr-axSpA. For medical professionals, these codes are common and they’re an important way that rheumatologists can identify patients as accurately as possible – separating nr-axSpA patients from other disease states. There may be differences in the way those patients respond to medications and knowing what to expect and choosing the proper therapy for a patient is critical. Having an ICD-10 code to reinforce the characteristics of a disease really helps to ensure that patients are diagnosed and treated accurately. However, administrative advancements always seem to lag behind regulatory and certainly scientific advancements. So even though the FDA had approved multiple therapies to treat nr-axSpA, and this was a big step and legitimizing the disease, there is still no ICD-10 code to help recognize nr-axSpA. So UCB worked with a wide range of stakeholders to submit an application to the Centers for Disease Control and Prevention or the CDC to obtain an ICD-10 code for nr-axSpA. The path to obtaining this code was a journey in and of itself and this committee accepts requests for coding changes only twice a year. Prior to October of 2020 there was no approved code of any kind for nr-axSpA. Patients were diagnosed using the spectrum of codes providers have available for ankylosing spondylitis. In 2018, UCB submitted an application for a new ICD-10 code. And then in October of 2020, we saw the first step in the right direction. The Coding Committee indexed an existing code to include nr-axSpA. This was progress but still it wasn’t a specific ICD-10 code for nr-axSpA, which is what we ultimately wanted. So with continuing advocacy from UCB, patient groups, professional societies, a new and specific code for nr-axSpA became effective October 2021. So we were very excited about that, because getting a specific code for the condition brings attention to the condition and legitimizes the disease. I know this is something that Ricky and Dr. Stark mentioned in the first episode particularly with respect to Ricky’s own journey.
Zoe Rothblatt 05:01
Yeah, Ricky, if you want to pick up there. Thanks Amanda for talking about that journey of, you know, how many years it took to get a code and then get a more specific code. It’s amazing to think about how many patients were left hanging. And Ricky, you are one of those patients. You told us in the first episode how you had to get diagnosed with ankylosing spondylitis, even though today, you would be categorized as non-rad axSpA. What does all of this bring up for you? Is there anything that stood out to you from what Amanda said?
Ricky White 05:31
Yeah, quite a bit. I mean, it’s great that this is now happening. It’s a shame, it wasn’t the case in 2010, when I was diagnosed. And like we discussed last time, yeah, I had to get a diagnosis of ankylosing spondylitis just to even get any treatment at all. And even with that, I was still refused treatment. So even with a diagnosis for ankylosing spondylitis, I still struggled to get treatment because although I had it on paper my clinical symptoms didn’t match up. And the NHS, which is what I was under, at the time back in England, they knew that my clinical symptoms didn’t match up to the diagnosis so they refused to fund the treatment. And I’ve heard very similar stories here in the U.S. You may have recalled, you know, I moved to the U.S. in 2014 so I’ve had the benefit of being in both health care systems and seeing how they work differently but for all the differences, there’s still a lot of similarity and getting disease codes like this is key for people to get the accurate diagnosis and then get treatment. I still hear today, people get misdiagnosed all the time and with a degenerative disease, it’s critical that we can get diagnosis and treatment done earlier because we can prevent so much damage and so much pain and problems in the long term if we can do that. And so this is just the first step of many to do that.
Zoe Rothblatt 06:42
I want to pick up on something you said talking about access issues and how the diagnosis is just one piece to like starting to get answers, but it ultimately can lead to some more obstacles along the way. Like you mentioned, you didn’t have the right criteria to get certain medications. Can you talk to us about the kind of access issues that you had and if you’ve heard from other patients about having them and what was going through your mind at the time?
Ricky White 07:09
Yeah, it’s something I hear a lot from other people. I’ve been more fortunate than some in my journey in regards to access. It helps to have a well-paying job and good health insurance and all of those kinds of things but not everyone has that privilege. So it’s really difficult, potentially, in somewhere as advanced as even the U.S. that there’s such a difference in availability across 50 states, and I hear everything from I can’t get any coverage at all, because of their disease and the requirements of their disease to: “Yeah, I get everything I want and it costs me very little”, and there is such a broad spectrum for many people. Again, I’m now in a place of privilege, where I have good health insurance and my costs are affordable to me, but not everyone’s the same. I mean, a lot of the anti-TNF injections that people take for non-rad axSpA and ankylosing spondylitis. If you look at the sticker price of those before the insurance, some people pay that out-of-pocket, and it’s, you know, upwards of $1,500-$1,600 a week and that’s not affordable for a lot of people. And so barriers like that certainly cause a lot of problems for patients. And so by having now this new diagnosis code, and then what will come with it is better guidance around treatment availability for those and then it’d be less of a kind of zip code lottery and more of a guidelines and standards approach, right? If you’re diagnosed with this, then these are the treatment options available to you based on clinical studies. That’s the place we want to get to. Getting the code is the first step.
Zoe Rothblatt 08:37
So Amanda, talk to us about how we get to that place that Ricky’s talking about where patients can have access to medications at an affordable and equitable place. What kind of work are you involved in at UCB to help move this along?
Amanda Ledford 08:52
Thanks Zoe, that’s a fantastic question. UCB is committed to promoting affordable and equitable access to care for all patients. And Ricky alluded to this. Ideally, we would like to see all patients have access to a range of affordable, high quality health insurance options that meet their needs, but also have transparent, reliable, formularies and affordable out-of-pocket costs. As far as specifics, we’re really working to remove barriers to the provider’s ability to prescribe the most appropriate therapy to their patients, we feel strongly that decisions about the most appropriate treatment should be made by the health care provider and the patient rather than the insurance company. One example is step edits, or the practice of forcing patients to try and fail on one or sometimes more drugs before getting access to the originally prescribed medication. Also restrictive formularies make it more difficult for patients to access the best treatment for their individual circumstances. UCB is working with a coalition of patient groups, including GHLF, so thank you for your continuing work and your leadership on this issue. We’re working with that coalition to advocate for step therapy override legislation at both the state and the federal level. Step therapy override legislation would create a process whereby a physician can override step therapy protocols under certain circumstances. For example, if the patient has already tried and failed on a particular medicine. And this creates a clear path to get the patient on the most medically appropriate treatment. These bills don’t prevent or prohibit step edits, but they do provide a clear pathway for providers to override health insurance plans’ step therapy requirements. To date we have seen a good bit of success at the state level, over 30 states have enacted step therapy override legislation and we are actively working to promote the Safe Step Act at the federal level when the new Congress arrives in January.
Zoe Rothblatt 10:48
Thank you, Amanda, all such important work. I know so many in our community deal with step therapy and you know, we always say that patients should have access to the right med at the right time and the one they originally agreed upon with their doctor. So let’s say that scenario is true and the patient does get the medication their doctor prescribed, there are often a lot of challenges around paying for treatment. Amanda, can you talk to us about this affordability and the concept of copay accumulator adjusters and what those are?
Amanda Ledford 11:20
Absolutely. Thank you for raising the issue. At UCB we want to preserve manufacturer’s ability to provide financial assistance to patients who aren’t able to afford the medications they need. We’re working to advocate for policies that would prohibit or at least curb the insurer practice of penalizing patients for accepting manufacturer assistance to help with out-of-pocket costs. Specifically, we’re working to advance legislation at both the federal and the state level that would prohibit or at least put some parameters around the use of so called copay accumulator programs. Accumulators are utilized by insurance companies so that they do not have to count manufacturer assistance towards a patient’s out-of-pocket maximum or their deductible. So as a result, individual patients can struggle to afford and adhere to their medications. But the insurers and the pharmacy benefit managers are the middlemen, they really shift more cost-sharing responsibility to the patients and siphon some benefit from the manufacturer assistant themselves. We are also working with several organizations to advocate for closing a loophole in the Essential Health Benefits requirements, which would no longer allow plans to employ so-called copay maximizer programs. These programs are a little less problematic for patients than an accumulator program because patients don’t see that huge mid-year “cliff” or high out-of-pocket payment. The maximizers still take part of the value of the manufacturer assistance from the patient to the benefit of the insurers. And those manufacturer assistance amounts don’t count towards the patient’s out-of-pocket maximum or their deductible amount. 16 states and Puerto Rico have already passed some form of copay accumulator legislation at the state level, and in Congress copay accumulators and maximizers continue to be a major priority for UCB. In 2023, we plan to work with our advocacy partners, including GHLF on commonsense reforms to help bring down costs for patients.
Zoe Rothblatt 13:24
Thank you, Amanda. It’s amazing to hear about the progress. To hear that 16 states and Puerto Rico have passed legislation to protect patients and help them get access to affordable medication is really huge. And like you mentioned, we’re hoping we can see action on the federal level. Ricky turning it over to you, what were you thinking about as Amanda discussed these maximizer programs where the payment made on behalf of a patient isn’t counted towards their deductible? Have you ever encountered something like this? Or do you hear from other patients about difficulty using their copay cards?
Ricky White 13:59
I’ve definitely heard about other people having difficulty for sure. It’s not something I’ve personally dealt with. But yeah, absolutely. And so the more things we can do… I think everyone would agree, the more things we can do to help make these medications and the correct medications more affordable for patients is a good thing. So I mean, my question would then be: how can I as an individual, or maybe as a local patient organization, what can we do to help pass these legislation at the state level? What can we do to get involved?
Amanda Ledford 14:25
Ricky, that is a fantastic question. And I know that at UCB these are issues that we believe strongly in, but we also recognize that patients are the best face and the best voice to take these issues to policymakers. So we do everything we can to support patients and their advocacy.
Zoe Rothblatt 14:42
I totally second everything Amanda just said. I think at the end of the day, policymakers can read the bill and look at the numbers, but you know, hearing a personal patient story can really sway the decisionmakers into understanding the real life impact that these policies have on people, to individual lives at stake. It’s… you know, their well being, it’s their ability to afford other things in their life and not just have everything about health so I think that including the patient’s story and all that you do to advocate is so important. And in thinking about how you Ricky or other patients can get involved, GHLF has a 50-State Network where we’re active in all 50 states and Puerto Rico and we always encourage advocates to join us and advocate with us whether it’s testifying, submitting comment letters, writing an op-ed about your experience. I think that the way you want to get involved in advocacy is really up to you and how you want to raise your voice. I’ll open it up, if either of you have any closing thoughts on today’s discussion, you know, whether it’s about the advancements in diagnosis, or helping patients get access to treatment. Ricky and then Amanda, either of your closing thoughts.
Ricky White 15:50
So it’s great to hear about all these new changes and the new ICD code. And this is only going to have trickle down effects, and so something I’ve been involved with is talking to patients on an individual level through our organization Walk AS One, and what we found is, because people have traditionally been diagnosed with other conditions or forms of ankylosing spondylitis, that’s the term they Google when they get home from the doctor. They don’t Google non-rad axSpA. And so by having that now recognized, it’s going to have a trickle down effect. So when they get home from the doctor, and they want more information or more support, they can now make sure they’re looking in the right places for that support. And then, you know, organizations like ourselves, and people like UCB, and you guys over there can make sure that the resources are there for them when they do do that Google search.
Zoe Rothblatt 16:38
Yeah, thank you Ricky. I think it’s so important that people can find information that they can relate to and not feel like they’re trying to squeeze themselves into somebody else’s diagnosis. And Amanda, I’ll turn it over to you, any closing thoughts on today’s discussion?
Amanda Ledford 16:53
Thank you, Zoe. First of all, thank you and Ricky for having me today and letting me be part of this conversation. It was fantastic to talk about the ICD-10 code for nr-axSpA and really excited and proud of our part in getting that for this patient community. It was also great to talk about the progress that’s been made towards increasing patient affordability and access to necessary medicines but as we all know, there’s still a lot of work left to do in this space. So I’m very thankful to have partners like you and like Ricky to work with us on these important issues.
Zoe Rothblatt 17:31
Well, Ricky and Amanda thank you so much for joining us today. It was really valuable to hear the insights from you about, you know, the policy changes and improving the lives of people with non-rad axSpA.
Steven Newmark 17:42
Yeah, that was great. It’s always fascinating to hear from a patient directly and of course, from someone like Amanda who gives the insight on policy and advocacy. This episode, as well as our first episode on this topic was made possible with support from UCB, sponsor of the Global Healthy Living Foundation. We’d love to hear from you about your experience with non-radiographic axial spondyloarthritis so send your email to [email protected].
Zoe Rothblatt 18:08
And who knows whatever you share, maybe included in our listener feedback portion of future episodes.
Steven Newmark 18:13
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 18:18
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 check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 18:32
I’m Steven Newmark. We’ll see you next time.
Narrator 18:38
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 12- China Eases “Zero-COVID” Policy: Insight on the Implications
In this episode, our hosts discuss China’s decision to roll back some of its “Zero COVID” policy by reducing testing and quarantine restrictions.
While easing these restrictions is in line with what has happened in the U.S., we can’t help but wonder – is China prepared to do so with low booster rates and no variant-specific vaccine? Our hosts also discuss what implications this has for the immunocompromised community.
“Because they’ve been sort of bottled up for so long, COVID is on the verge of exploding in China. They are already reporting very high numbers, nearly 40,000 new infections per day,” says Steven Newmark, Director of Policy at GHLF.
China Eases “Zero-COVID” Policy: Insight on the Implications
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
“Because they’ve been sort of bottled up for so long, COVID is on the verge of exploding in China. They are already reporting very high numbers, nearly 40,000 new infections per day.” 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 00:30
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:35
Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. Before we get started, we want to be sure that everyone takes listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:48
We sure do and as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout-out to Let’s Get Personal, a podcast hosted by Dr. Daniel Hernandez. And it’s focused on the rheumatoid arthritis patient journey. So definitely take a listen.
Steven Newmark 01:05
Excellent. I look forward to that.
Zoe Rothblatt 01:06
All right, let’s start with the listener comment. Are you ready Steven?
Steven Newmark 01:10
I am ready.
Zoe Rothblatt 01:11
This one came from Stephanie W., who wrote: “Informative podcast for those who are chronically ill.”
Steven Newmark 01:16
Great, that’s what we try to do is to inform and we try to do it through the lens of the chronically ill community.
Zoe Rothblatt 01:22
Which is you know, if I could just have a little moment here, it’s so important because we’re often left out of the major news. So we just really want to insert the voices of our community back into the news.
Steven Newmark 01:33
Well, let’s get started! Today, we will talk about China, what’s happening with COVID over there, and ultimately what it means for our community. But first, we have a few news updates.
Zoe Rothblatt 01:42
We sure do. And the first bit of news: I saw 44 states are reporting high or very high flu activity.
Steven Newmark 01:50
Yeah, over the past two years masking and other pandemic precautions has kept the flu at lower rates and has left us for lack of a better term immunologically naive.
Zoe Rothblatt 01:59
Right, because you know, I haven’t gotten the flu since the pandemic started. So I definitely fall into that category. Although I have a vaccine so I do have some protection but none of that acquired immunity I think it’s called. Okay, so here are some numbers. The CDC estimates that so far this season, there have been at least 8.7 million illnesses, 78,000 hospitalizations, and 4,500 deaths all due to the flu.
Steven Newmark 02:27
Yeah, these numbers spiked after Thanksgiving, which is no surprise. And that’s a good reminder to try and stay safe for the upcoming holidays. You know, I’ve said this before I wear a mask, probably in larger part these days for the flu and other viruses than even for COVID in some respects.
Zoe Rothblatt 02:43
Yeah. And I know you always talk about how you and your family are always masking the week leading up to a gathering. And you know, it’s just a good idea.
Steven Newmark 02:50
I’m masked all the time, but that’s different. I know, I know. I’m in the minority. I get it.
Zoe Rothblatt 02:54
Yeah, well, extra cautious. And we’ve seen this year over year and the data shows that when we have gatherings these infectious diseases spread and the numbers spike. So it’s just a really good reminder that you know, we have the tools to stay safe. So as we go into the rest of the holiday season, you’ll consider what you can do to avoid getting illness as best you can.
Steven Newmark 03:17
Absolutely. In other news, the U.S. is going to formally end the Mpox emergency declaration.
Zoe Rothblatt 03:23
Yeah, and Mpox is the new term for monkey pox. And I saw that the Biden Administration recently announced that it doesn’t expect to extend the declaration of public health emergency for Mpox. And this declaration expires at the end of January.
Steven Newmark 03:38
Yes, the administration cited the low number of new virus cases as they announced these upcoming plans.
Zoe Rothblatt 03:44
And of course you know that doesn’t mean that there’s going to be no effort and no consideration of Mpox. It’ll still be monitored, and the case trends will be looked at closely. It’s just not in that emergency state.
Steven Newmark 03:56
Exactly. Just because something’s not officially an emergency doesn’t mean we stopped looking at it. In other news, you told me before we got on the air that you’ve got some new COVID-19 Patient Support Program polls to share.
Zoe Rothblatt 04:07
Oh, yeah, so these are always really fun because we get to learn what our community is thinking about and experiencing. So this time, we polled our support program on long COVID to learn more about if they’ve been diagnosed with it, and what symptoms they had. And you know, if they haven’t been diagnosed, ultimately what symptoms concern them.
Steven Newmark 04:26
Right.
Zoe Rothblatt 04:26
So are you ready to hear the results?
Steven Newmark 04:28
I’m ready.
Zoe Rothblatt 04:29
65% said they’ve been diagnosed or tested positive for COVID. And of that, 44% of those said they’ve been diagnosed with long COVID.
Steven Newmark 04:38
Wow. Interesting. What were some of the diagnoses that they reported?
Zoe Rothblatt 04:42
So yeah, it’s a great question. The most common symptoms they had were chronic fatigue, brain fog and shortness of breath. And what was also really cool was this lined up with the top symptoms people reported being worried about. I mean, I don’t know if that’s cool, because what people are worried about is actually what people are experiencing. But it was interesting to note that those lined up really well.
Steven Newmark 05:04
Interesting. Well, hopefully those folks with long COVID are taking the care that they need and will get better soon. And hopefully all of us will be in a better state as we enter 2023.
Zoe Rothblatt 05:14
For sure. I’m definitely hoping for continued research on long COVID Because we still have so many questions, but little polls like these help us learn a bit more and add to that.
Steven Newmark 05:24
Yeah, so in big news in our main discussion for today, we’re going to talk a little bit about what’s going on in China. As many of you are aware, China has this “zero-COVID” policy, which can be quite draconian in the way it treats its residents, but they’ve begun lifting some of its COVID restrictions, even though the government “zero-COVID” policy officially still remains.
Zoe Rothblatt 05:44
Okay, Steven, how come now China decided to lift the “zero-COVID” policy?
Steven Newmark 05:49
Well, there were essentially nationwide protests that began in late November after the communist government decided to stick with “zero-COVID” policies. And as you know, protesting in China is not a common occurrence. It’s not like the United States. And so the idea that protests were capable of even breaking out I think, really affected some of the Chinese leadership.
Zoe Rothblatt 06:07
So Steven, talk to me, what were the results of this? You know, where and how are they reducing the “zero-COVID” policy?
Steven Newmark 06:16
Well, more than 20 cities, including major cities, like Beijing, got rid of the requirements for negative COVID tests just to enter public transportation and other public venues and some residential compounds now allow infected residents with special needs to quarantine at home instead of be sent to a centralized quarantine.
Zoe Rothblatt 06:33
All seem very fair to me. I can’t imagine being sick with COVID and having to quarantine in a centralized facility and not in the comfort of your home as someone that’s chronically ill we rely so much on like the safety of our home and you know, just having loved ones around. Now obviously, if you have COVID you can’t necessarily have loved ones around but just having the things that you need.
Steven Newmark 06:54
Yeah. Well, your loved inanimate objects, if I can, my iPad.
Zoe Rothblatt 06:59
Exactly. Your cozy blankets, anything you need…
Steven Newmark 07:03
My books!
Zoe Rothblatt 07:03
I can’t imagine having to go somewhere else. It’s pretty scary. So I am glad to see some of these. I don’t even know if you could call them precautions.
Steven Newmark 07:12
Well, just the idea. Imagine having to show a negative test every time you ride public transportation. I mean, how would you get around?
Zoe Rothblatt 07:18
I mean, I would never go anywhere. Yeah.
Steven Newmark 07:21
You can’t get around. You’d have to take a test, like every three hours. It’s Looney Tunes.
Zoe Rothblatt 07:25
Yeah. And like if you think about even just like having to go to the doctor like just like basic things that you need to do. It’s like an extra step. It’s already hard enough, let’s say to get to the doctor, because you need insurance approval, you need to get an appointment. There’s all these wait times, and now you have to get a test. Like it just doesn’t stop.
Steven Newmark 07:42
Yeah, well, here’s the downside. Because they’ve been sort of bottled up for so long. COVID is on the verge of exploding in China. They are already reporting and this is from China. So we don’t even… we can’t even verify how accurate this is. But they’re already reporting very high numbers, nearly 40,000 new infections per day.
Zoe Rothblatt 07:59
So let’s talk about what factors are at play here because China does have a highly vaccinated population. About 90% are vaccinated with the primary series, which just for context, in the US, we have about 68% that are fully vaccinated.
Steven Newmark 08:17
Yeah, but they’re not using the same vaccines as us they refuse to use our American vaccines. Their vaccines are called Sinovac and Sinopharm. These are inactivated vaccines that are just not quite as effective. These are vaccines that were developed, of course, early on in the pandemic, they’re refusing to accept our boosters, which are more Omicron specific and do a better job, not to mention on top of that boosters generally lag. While you mentioned 90% of folks have been vaccinated for the primary series, the number of folks who have gotten boosters is well below that. In fact, one number I did see is that only 30% of 80 plus year olds have had a booster shot in China
Zoe Rothblatt 08:57
Well, and we know how important the boosters are because your immunity wanes. We have these new variants that require more targeted vaccines. So it’s one thing to say you have a highly vaccinated population. But then when you look deeper, and you say, okay we’re not as highly vaccinated as we thought because we’re lacking in the quality.
Steven Newmark 09:15
Right. And don’t forget, they’ve had a lot less folks who’ve been infected. So their infection induced immunities is very low.
Zoe Rothblatt 09:22
That’s true, you know, with “zero-COVID”, people haven’t been getting infected, so they don’t have that immunity.
Steven Newmark 09:28
Epidemiologists are warning that the country is not prepared for wave of deadly COVID infections that it may face from Omicron very soon.
Zoe Rothblatt 09:36
And while we know that Omicron is less deadly than Delta, because we’ve seen that with data here, we’ve still seen how it can be deadly for people with no vaccine protection and vulnerable groups. So it’s just really important to remember that aspect of it.
Steven Newmark 09:51
Absolutely. And you know, if we’ve learned anything from this pandemic is that what happens in China affects everyone around the globe, everyone, right?
Zoe Rothblatt 10:00
Right! Yeah, I was about to ask, you know, what does this mean for us in our community?
Steven Newmark 10:04
Yeah.
Zoe Rothblatt 10:05
Of course, you know, we’re a global society. New mutations can arise that can come our way. Right. You know, we’re not in this COVID fight alone.
Steven Newmark 10:14
Yeah, exactly. So as we know, the virus began in China… began with, you know, one case, a handful of cases, whatever it was, and it became what it became. And you could have said two, three years ago at this point, oh gosh, I’m losing track of time, you would have said: it’s only a few cases in China. But look what happened. So now you have a situation where, again, in China is over a billion people. And as we mentioned, the population just doesn’t have the protections that we have here. The Chinese government is refusing to accept the boosters that are Omicron specific, even though that’s the dominant strain. Now, they’re not taking proactive measures to get folks boosting at all in the way that other countries around the globe have. And you have a population that just has a much lower rate of infection induced immunity. So it’s a little bit of a powder keg, and we’ll cross our fingers and hope for the best.
Zoe Rothblatt 11:01
And a population that’s over it. You know, they’re in the streets protesting because they don’t want the “zero-COVID” policy. I can’t speak for the Chinese population but it must be really disheartening to know that there are vaccines across the world that are working to protect and you have to be so isolated and following all these strict rules.
Steven Newmark 11:22
Yeah, no, absolutely. Many political commentators suggest that the ruling party in China has instituted these rules less for public health measures and more as the ability to design a more authoritarian regime. Because certainly, it’s not working to help in the public health interest. At some point, China is going to open it as we mentioned, it’s starting to open now, and they’re going to be in a more vulnerable state as a result.
Zoe Rothblatt 11:45
And you know, that just makes my heart go out to our immunocompromised friends in China. We know people here are feeling alone and isolated. I imagine that’s just so much more heightened over there.
Steven Newmark 11:56
Definitely. Well, like I said, I wish we could do something better than just cross our fingers. But for now, we’ll have to hope for the best.
Zoe Rothblatt 12:03
Yeah, we’ll keep having these discussions. You know, I think that’s also important just to talk about it.
Steven Newmark 12:08
Absolutely.
Zoe Rothblatt 12:10
Okay, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 12:14
I thought it was interesting that of those in our patient support program who responded to the poll 44% have said they’d be diagnosed with long COVID, you know, suggesting the interplay between Long COVID and chronic illness.
Zoe Rothblatt 12:27
And you know, I learned from you about what’s going on in China with the reduction of the “zero-COVID” policy.
Steven Newmark 12:35
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories. Send your email to thehealthadvoca[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 12:51
Also email us you want to subscribe for our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 12:56
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, please give us a rating and write a review on Apple Podcasts and check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 13:10
I’m Steven Newmark. We’ll see you next time.
Narrator 13:16
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 11- Building a more just and equitable medicines system for all – with Priti Krishtel from I-MAK
Millions of lives are at risk worldwide because of unjust systems that prevent those who are most vulnerable from getting the medicines they need. Even in the U.S., structural inequities exist and remain prevalent, despite appeals for their elimination.
In this episode, Priti Krishtel, a health justice lawyer and Co-Founder and Co-Executive Director of the non-profit organization I-MAK, shares how her organization advances solutions to address structural inequity in the medicines system through research, education, and policy.
“I think in the U.S. we have a real problem now. And that’s why so many people are speaking out to say prescription drugs should not be priced this high,” says Priti Krishtel.
Building a more just and equitable medicines system for all – with Priti Krishtel from I-MAK
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Priti Krishtel 00:06
“We were working in the Global South like India or Brazil, countries that had the ability to produce medicines themselves, and there we saw a lot of wins. You know, we were able to reform patent law to have more safeguards for health. But I think in the U.S. we have a real problem now. And that’s why so many people are speaking out to say prescription drugs should not be priced this high. We’ve got to have a way to rein in these costs!”
Steven Newmark 00:36
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 00:46
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:51
Our goal is to help you understand what’s happening in the health care 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, we have so many to choose from.
Zoe Rothblatt 01:04
We sure do and as a reminder, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout-out to Talking Head Pain. Joe, the host of the show recently attended the American Headache Society Conference and just has some really great conversations with experts there. My personal favorite was a quick episode on the link between migraine and COVID. So definitely check it out.
Steven Newmark 01:28
Yeah, I had the good fortune to join Joe at the American Headache Society Conference and it seems like he was interviewing anyone and everyone and all the most interesting conversations he had are now being posted. So I look forward to listening.
Zoe Rothblatt 01:40
Awesome. Well, we have a listener comment. Are you ready, Steven?
Steven Newmark 01:43
I am ready.
Zoe Rothblatt 01:44
This one is from Diana W. who wrote: “Thanks for the Thanksgiving talking points. It really sparked great conversation.”
Steven Newmark 01:50
Oh, well, thank you, Diana. Hopefully the conversation was civil, to say the least. And we hope you and all of our listeners had a great Thanksgiving.
Zoe Rothblatt 01:58
Yeah, amen to that. I had a really nice Thanksgiving. How about you Steven?
Steven Newmark 02:01
It was good. It was good. I unfortunately over ate, I guess that happens. Yeah. But you know, what can you do? You got to atone the week after I guess.
Zoe Rothblatt 02:09
Me too! Well, today I’m really excited for you to hear the interview I had with Priti Krishtel, a health justice lawyer and co-founder and co-executive director of I-MAK, which is a non-profit building a more just and equitable medicines system. And I spoke with her about patient access to medication and the importance of bringing patient voices into the decision making process. So I’m just excited for you and our listeners to hear it.
Steven Newmark 02:35
Great. I’m excited to listen. But first we have some news updates. A first thing you should know is that Twitter has stopped enforcing COVID misinformation policy.
Zoe Rothblatt 02:44
Yeah, this put a pit in my stomach when I saw that. You know, it could have really serious consequences and just lead to even more false claims about COVID and the vaccine than we’ve already seen.
Steven Newmark 02:55
Definitely. There’s a lot of dealings and goings happening over in Twitter land. So you know, COVID seems to be a part of that. And certainly COVID misinformation. Elon Musk introduced his policy recently, and it counters a policy that Twitter introduced in January of 2020.
Zoe Rothblatt 03:10
I saw that when they first enacted that, more than 11,000 accounts were suspended for violating the rules, and nearly 100,000 pieces of content were removed from Twitter. So that means I guess all that could be back now which is scary.
Steven Newmark 03:26
Oh, absolutely. The problem is, it’s larger than one platform. Elon Musk likes to call Twitter, the virtual town square, where people come together to exchange ideas. And he’s into protecting free speech and all this kind of stuff, which is great but you know, the analogy doesn’t fully hold. A town square in the golden days was a place where a handful of people or a dozen people or several dozen people got together. But misinformation that spreads on the internet, particularly a place like Twitter, can reach millions of people in a matter of seconds, let alone minutes and days. And influential people who have influence over others, people who are respected and looked up to start to spread this misinformation as well. And it starts to get into people’s brains.
Zoe Rothblatt 04:08
And like you said, it’s not just Twitter, it’s all of social media. It’s really a problem. We’ve been working hard the whole pandemic to counter that misinformation with things like our COVID Support Program, which is still ongoing, and people can sign up for it. And you know, we really try to look to experts, specialists, you know, doctors and patients to say: “Here is actually informed and evidence-based information that we can give out.”
Steven Newmark 04:34
Right. And again, one of the problems with Twitter and other social media is they have these algorithms where you’re only seeing certain select feeds based on your individual user algorithm. So you may only be getting the misinformation. But you know, the only thing I could say is the best way to combat this is by promulgating more truthful statements and the more that we can get our truthful statements out there regarding, not just COVID-19, but you know just the idea of what it’s like to live with a chronic condition. It’s the best way to combat it and hopefully break through to some of these algorithms to some of the folks that you may know.
Zoe Rothblatt 05:08
Well, in other COVID news a big topic is Evusheld. Evusheld is the preventative COVID treatment for people immunocompromised, and I saw in a recent statement by the National Institutes of Health, the NIH, said that, you know, the new subvariants are likely resistant to Evusheld.
Steven Newmark 05:25
Yeah, Evusheld as a reminder, as you mentioned, is the preventive COVID treatment for people who are immunocompromised, and it’s disheartening to hear that the new subvariants are likely resistant to Evusheld but what can you do? Well, you know, advocate for yourself, as we always say, talk to your doctor and make a plan for if you do get COVID.
Zoe Rothblatt 05:43
Yeah, and you know, you still get some protection from Evusheld, and some protections is of course better than none, right? It’s not saying it’s totally ineffective, it’s just waning in effectiveness. But you know, still talk to your doctor about getting that. But also, in that case, the bivalent booster is becoming even more important to make sure you have all the layers of protection you could possibly have.
Steven Newmark 06:04
Right, absolutely. Moving on, December 1 through December 7 marks Crohn’s and Colitis Awareness Week.
Zoe Rothblatt 06:11
Yeah, this runs every year during the first week of December, and it’s really a good time to just spread awareness and raise the voices of people living with Inflammatory Bowel Disease (IBD), which is the umbrella term for Crohn’s and colitis. So okay, Steven, here’s some fast facts about IBD. Are you ready?
Steven Newmark 06:29
I’m ready.
Zoe Rothblatt 06:29
So according to the CDC, around 3.1 million adults in the U.S. have been diagnosed with IBD, and around 7 million people worldwide have IBD.
Steven Newmark 06:40
Wow. Well, I’m no stranger to IBD myself so that’s not too surprising. It’s unfortunate, but not too surprising, I would say. I also know that the main symptoms of IBD are abdominal pain, chronic diarrhea, rectal bleeding, weight loss and fatigue.
Zoe Rothblatt 06:54
And you know, you said it, there are chronic, there is no cure. It’s a chronic disease. And there are great advancements and medications and you know, in serious cases, you might need surgery that that can help you reach remission. So although there’s no cure, you know, there’s a lot of stuff going on that can help patients live healthy and meaningful lives with IBD.
Steven Newmark 07:13
Absolutely. So this is a great week to raise awareness for patients with Crohn’s and Colitis.
Zoe Rothblatt 07:20
So like I mentioned, we have a special guest here with us, Priti Krishtel, a health justice lawyer and co-founder and co-executive director of I-MAK, a non-profit building a more just and equitable medicines system. She has spent nearly two decades exposing structural inequities affecting access to medicines and vaccines across the Global South and in the United States. That includes advocating for equitable access to COVID-19 vaccines across the globe to ensuring that the Biden-Harris administration is prioritizing equity in the Patent and Trademark Office. Well, Priti welcome to The Health Advocates.
Priti Krishtel 07:54
Thank you. Thanks for having me.
Zoe Rothblatt 07:56
Awesome. We’re so glad to have you here. Why don’t you start off by telling us a bit about your organization and its mission and how you got started in this work?
Priti Krishtel 08:04
Sure. So we started working on this issue at the peak of the HIV epidemic. So early 2000s, where drugs had come to market for HIV, but weren’t reaching people worldwide who needed them. And that’s where me and my co-founder Tahir first met. We had both gone to India, purely by chance, he was a private sector lawyer who represented big companies on their intellectual property or their patents. And I was a health justice lawyer working with clients who lived under the poverty line who couldn’t afford their medication. And when we met, we realized that a lot of the reasons drugs were coming to market, but then not reaching patients who needed them was because of the way the patent system was being misused. Many of the biggest drug companies were saying that they couldn’t allow for competition, they couldn’t allow prices to come down, and that there was no way to do it. And at the time it was generic companies in India and all over the world who said: “Actually, that’s not true.” This is a worldwide health epidemic, and we can make sure it happens. So we started I-MAK then, and we’ve been working together with our team ever since. And, yeah, we’re coming on almost 20 years of doing that work now.
Zoe Rothblatt 09:17
That’s awesome. Congratulations on almost 20 years! And as you say that it makes me think what change have you seen in the last 20 years? Have there been advancements in getting patients the medications that they need, like you’re talking about?
Priti Krishtel 09:31
Yeah, you know, it’s really interesting, because we were working in the Global South, like in really, usually middle income countries that have really huge populations living in poverty, you know, India or Brazil, other countries, and countries that had the ability to produce medicines themselves. And there, we saw a lot of wins, you know, we were able to reform patent law to have more safeguards for health. We were able to bring cases alongside people living with diseases who are directly affected, to be able to say: “Hey, you know, patents are supposed to be a reward for when somebody invents something.” But when the system starts to get misused, they start to basically build these patent walls, and they start to extend their monopolies longer than they should have them and prices go up and patients don’t get access. So we were able to win legal cases, reform laws, start to change the public conversation. But then in about 2015, we started getting calls from the United States, because you know prescription drugs spending, I think, has increased about 60% over the last 10 years in the U.S. Like it’s at $400 billion today, which is much higher than it used to be. And we started to get calls saying: “Can you come see whether we have a patent problem here in the US too?” Like: is this system not working as intended? And so through all of our research here, we started to realize that yes, actually, like drug makers here, the biggest drug makers, on the most profitable drugs are actually like filing for and getting hundreds of patents on the top selling drugs. And so, you know, your question like: “Is it getting better?” Well, in some cases, it got better globally. But I think in the US, we have a real problem now. And that’s why so many people are speaking out to say prescription drugs should not be priced this high. They shouldn’t cost the country, you know, public payers like Medicare this much. We’ve got to have a way to rein in these costs.
Zoe Rothblatt 11:27
Yeah, especially for the community that our organization serves with chronic disease. It’s like a lifelong condition that you keep having to pay these high prices. It’s really, really challenging when you’re already managing your health to also be strapped with financial decisions like that. And I wanted to ask about your Participatory Change-Making tool and how that fits into this discussion around patents and hopefully changes.
Priti Krishtel 11:53
Yeah, so you know, we spend a lot of time as I was saying, like, using our research to expose the problem, making sure that the press and policymakers and the public knew that this gaming of the patent system was really happening and eroding and diluting its original intent. What happened next is we started to observe the way that law reform usually happens in the U.S. is that it’s those with the deepest pockets who are able to lobby Congress. And so we built Participatory Change-Making to really make sure that people who are being affected would have a seat at the table with policymaking around medicines. We focus first on patents because it’s, you know, kind of the core of our work and usually with patent policymaking, it’s only major corporation who have a seat at the table. So for example, the patent the Public Advisory Committee to the Director of the Patent and Trademark Office, you know, it doesn’t have patient groups or affected communities. So we’ve been making a big push with the agency that that needs to change, but Participatory Change-Making, or PCM, that’s our program, we convene different stakeholders together. And so we make sure that Patent Office officials for example are at the table with people living with cancer, or arthritis, or diabetes, or other conditions, so that they can hear directly from communities who are affected. But in the spirit, also of making sure that our democracy survives in this moment, like, because America is so polarized, because we’ve lost our way on… in general, being able to have difficult conversations across difference… What we do is we bring together a pretty broad-ranging set of stakeholders. So you might have lawyers for the pharmaceutical industry at the table or investors, or patent judges, or academics. And really, by having that very big table with a lot of diverse viewpoints represented, not just like ideological or political differences but also just people who have a different lens on the system, the idea is that people’s understanding of the system would be deepened, and then better policy would come out of it. So policy development could happen in a really informed way.
Zoe Rothblatt 14:05
Yeah, that’s amazing. Thank you for all that you do to make it an inclusive conversation and bring in so many voices. I want to quickly ask what’s it like bringing all those groups together, and if there’s, you know, a memorable moment from a patient interaction that you remember?
Priti Krishtel 14:20
Yeah, in our last convening, we had different government agencies represented, different types of sectors, even because the patent system affects not only pharma, but also tech and, you know, other stakeholders. And so it’s a very diverse room in terms of viewpoints. And we asked some of the people living with cancer or diabetes to open up to us and just make sure that they grounded us in the stories of the impact of the cost of medicines on the real lives. And we got to hear, you know, just that, and I think it sort of anchored us in the policy conversation and that perspective. And then a very rich conversation ensued, where we were talking about the wonkiness of policies about the intersection of the patent office and the FDA. And then at one point, we were really, you know, a bunch of us or lawyers or policy people were getting into it, and I remember somebody from T1International, which is a diabetes advocacy organization, spoke up and said: “Can I just ask, does this actually have anything to do with my life?” And we looked at the policy we were discussing again, and we realized that actually it wouldn’t have an impact, you know, down the line in terms of the cost of medication, you know, to an individual patient or family. And so it really was such an important and powerful course correction that I realized, like we have to keep going, we have to keep pushing government to engage in this type of participatory policymaking, because right now, it’s happening in a very top-down way, and it’s not going to have an impact on people’s lives unless we keep building that bigger table.
Zoe Rothblatt 15:51
That is such a good point! Always remembering that at the end of the day it’s, you know, the patient at the center of these conversations, and that’s, you know, whose life is really at stake here. My final question for you is, you know, what advice do you have for someone looking to get into this type of advocacy? Maybe a patient wants to get involved and raise their voice. What, what would you like to impart to them?
Priti Krishtel 16:14
Yeah, I mean, I’m told as a lawyer regularly that these are technical conversations that you need the facts and the evidence. And that you need to be an expert to have your voice heard. That’s the message that comes from those who want to uphold the status quo. Because it’s the status quo that makes people… you know, there’s billions of dollars on the table, people have a vested interest in maintaining it. And I really urge everyone to see through that and to know that it’s not true, and that if it’s so complicated, we as the public can’t understand it, then it’s actually the wrong system for us. One direct way to get involved is there’s an organization called Patients For Affordable Drugs that we work with quite closely, that spans different disease areas. And so I always encourage everybody to look at their website, or sign up for their newsletter, because they put out regular briefings on the different issues coming out of DC that people may want to get involved with. And if you’re interested in learning about what’s happening with patent reform specifically, you can sign up for our newsletter as well, you can go to our website, I-MAK.org. And then you can click on the thing that says ‘join us’, and then you’ll get our newsletter every month at that point.
Zoe Rothblatt 17:24
Excellent. We’ll be sure to include that in our show notes. Well Priti, thank you so much for joining us today on The Health Advocates and sharing about all the amazing work you and your organization do. We appreciate you.
Priti Krishtel 17:34
Yeah definitely. Thank you so much for everything you all do as well.
Steven Newmark 17:39
Wow. Yeah, that was fantastic. It was really great hearing from Priti about all that she does on behalf of patients, and particularly as a lawyer myself, I was fascinated to hear about how to use the legal system. In fact, I’m going to preempt you by saying that was my learning today.
Zoe Rothblatt 17:54
Oh, yeah. I was about to ask, you know, it’s the close of our show, what did you learn, so I will share that I was reminded by Priti about the importance of bringing the patient voice into conversations especially among decision makers.
Steven Newmark 18:07
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories. Send us an email at [email protected]. We hope to hear from you soon.
Zoe Rothblatt 18:18
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 18:23
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 18:28
Well, everyone thanks for listening to The Health Advocates a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts. And also check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 18:43
I’m Steven Newmark. We’ll see you next time.
Narrator 18:49
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 10- Talking Turkey Day and COVID
While COVID-19 vaccines and medications are largely available, this year’s celebrations will not be without risks, especially for the chronic disease community.
Our hosts discuss their plans for Thanksgiving and share their tips to stay healthy and to help advocate for communities that are at higher risks from COVID. “If you have loved ones or you’re surrounded by folks who may not be as sympathetic or as understanding to getting the vaccine or wearing masks, the best way to listen is to listen with empathy. It may be difficult to listen if you hear loved ones repeating false claims about the vaccine, masking or COVID, but if you immediately shut down their concerns, they may not listen to you in return,” says Steven Newmark, Director of Policy at GHLF.
Talking Turkey Day and COVID
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
“If you have loved ones or you’re surrounded by folks who may not be as sympathetic or as understanding to getting the vaccine or wearing masks, you know, the best way to listen is to listen with empathy. It may be difficult to listen if you hear loved ones repeating false claims about the vaccine, masking or COVID but if you immediately shut down their concerns, they may not listen to you in return.”
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 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, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:45
Hey Zoe, it’s Thanksgiving time, my favorite time of the year.
Zoe Rothblatt 00:48
Me too. I love it so much.
Steven Newmark 00:51
I do too. I like to overeat. I accept that it’s okay. Moderation is great, but only in moderation, as they say. So Thanksgiving is a good day to break from that moderation though, right?
Zoe Rothblatt 01:00
Yeah, you have to indulge a little bit. You know, the crispy marshmallows at the top of the sweet potato, something that you would probably never serve any other day of the year but it’s totally acceptable to have dessert on the table at Thanksgiving.
Steven Newmark 01:14
Umm marshmallows. That is true. I always say, 364 days a year, I cannot recall ever eating a whole turkey in my life, ever.
Zoe Rothblatt 01:23
It’s so fun. I love the indulgence.
Steven Newmark 01:25
Totally. And it’s so American.
Zoe Rothblatt 01:27
Yeah. Well, this year is my first southern Thanksgiving. I’m staying in Nashville. So we’ll see how that goes.
Steven Newmark 01:33
Excellent. So you’ll see a different part of the country. That’s very exciting. Well, today, on today’s special episode, we’re going to talk about Thanksgiving. And we’re going to do our annual Turkey Day talking points and how to talk to some of your relatives about what you’re dealing with as you go through your daily day with a chronic illness or as an advocate for folks with chronic disease.
Zoe Rothblatt 01:52
You know, the dinner table and like that fun environment we were just talking about is such a great time to educate loved ones about living with a chronic condition, the advocacy you do, it feels like pretty low stakes because you know, everyone’s just sitting around anyways. It’s not like you’ve called this big meeting.
Steven Newmark 02:09
Right?
Zoe Rothblatt 02:09
And people are in a good mood and having fun. And yeah, it’s just a great time to talk about these concerns that you have.
Steven Newmark 02:15
Yeah, and whether you’re with friends or family or neighbors, you know, hopefully there’s a celebration of love in the room, and it will be an easy time to talk with folks. Yeah. And you know, of course, we’re not ignoring that COVID is still very real. We know that many will be celebrating over zoom or with smaller groups. And that’s actually exactly what we want to talk about. We’ve said it once, we’ll say it again, you know, it feels like a lot of the general public is back in ‘normal life’, quote, unquote. Mass mandates have been lifted, work-from-home employees returned to offices, and many have just resumed pre-pandemic ways generally. And I’ll say it, you know, things aren’t cut and dry for those of us living with chronic illness. Yeah. And it’s a great idea whether you’re over Zoom or in person to start a conversation about your health and why it is important to stay safe from infectious diseases like COVID-19, and the flu.
Zoe Rothblatt 03:06
So Steven, you know, sometimes these conversations can be really hard to have, especially like everyone these days thinks they’re a public health expert.
Steven Newmark 03:13
Right?
Zoe Rothblatt 03:14
And sometimes it can feel really combative. So what are a few good ways to get going and even start having a conversation like this?
Steven Newmark 03:22
Yeah, I mean, even just starting the conversation is probably the most difficult part. But you can begin by explaining why you got involved with GHLF and the 50-State Network. You can share your personal story to the extent you’re comfortable doing that. You’re likely used to explaining your chronic illness and how it impacts your life so you can go into these conversations knowing that you’ve done this clearly, firmly and successfully before. You can explain your diagnosis and how it may put you at higher risk of severe COVID-19.
Zoe Rothblatt 03:49
Yeah, that’s a really good point. Just start out by making it about you and you know, like the focus on why you advocate, why you’re at severe risk maybe, and your chronic condition and just really making it about: “Hey, guys, I want to talk about these things that are important to me.”
Steven Newmark 04:05
Absolutely. And then you can easily transition into why wearing a mask helps protect the chronic disease community. Some folks are still questioning the use of masks but you could explain that people who are immunocompromised because they take immunosuppressive medication may still be vulnerable to COVID-19 after being vaccinated since we don’t have enough data yet on how well the COVID-19 vaccine protects these individuals. For now, many experts recommend that immunocompromised patients continue to follow standard mitigation efforts like wearing a mask even after they’re fully vaccinated.
Zoe Rothblatt 04:35
Yeah, that’s a really good point. Like it’s not coming out of nowhere, doctors and experts are saying that you should still wear masks and that they are protective. And it definitely helps. I feel more comfortable when I see someone wearing a mask. I know we’ve talked about this. It’s like you’ll get a little smile like: “Oh, that’s my companion out in the wild.”
Steven Newmark 04:52
Yeah, I feel that for sure!
Zoe Rothblatt 04:54
So what about the vaccine? This conversation can get really tricky and uncomfortable. How would you broach that topic with friends and family?
Steven Newmark 05:03
Yeah, again, I will explain that getting vaccinated helps protect the chronic disease community. It protects you, of course, but it also protects the broader community. Public health experts, medical organizations, doctors and specialists have stated that the COVID vaccine is safe and recommends that patients should get vaccinated unless they have a specific contraindication like an allergy to a vaccine ingredient, but concerns remain about whether the vaccine may be somewhat less effective in these patient groups compared to the general population, which makes it all the more important for the loved ones of immunocompromised individuals to get vaccinated too.
Zoe Rothblatt 05:38
Yeah, I’ve been on like a mini campaign these past few weeks to get my loved ones the flu shot and the bivalent booster and it’s going well so far but you know, sometimes it takes a little push to get your loved ones vaccinated.
Steven Newmark 05:51
Yeah, and if you have loved ones, or you’re surrounded by folks who may not be as sympathetic or as understanding to getting the vaccine or wearing masks, you know, the best way to listen is to listen with empathy. It may be difficult to listen if you hear loved ones repeating false claims about the vaccine, masking, or COVID but if you immediately shut down their concerns, they may not listen to you in return. So in this situation, it can be helpful to focus on sharing ideas and having facts ready. Instead of telling others they are wrong, you can explain why you feel otherwise and how staying safe is important to your health.
Zoe Rothblatt 06:24
Yeah, I think that’s a really good point, listening with empathy and also making it about you. Sometimes the news is just so general, and you know, this is good, this is bad, must do, can’t do… And when you bring it down to the personal level about, you know, why you need to stay safe and effective and what your loved ones caring for you means, I think it helps shut down a lot of those concerns.
Steven Newmark 06:47
Absolutely. And when you do have a sympathetic ear, definitely mention the 50-State Network, you can encourage your family and friends to become advocates and join our 50-State Network.
Zoe Rothblatt 06:56
Yeah, we have advocates all over the country and all 50 states and Puerto Rico and you know, we do trainings, and we have some really exciting stuff coming up for 2023. So definitely encourage those around you to get active.
Steven Newmark 07:08
Well, I’m very excited for tomorrow. It’s gonna be a great feast. What are your plans Zoe for Thanksgiving?
Zoe Rothblatt 07:13
So it’s my first Southern Thanksgiving. I’m staying down here in Nashville.
Steven Newmark 07:17
Excellent.
Zoe Rothblatt 07:18
My mom is coming down. So you know, I’ll show her around. We’ll have lots of fun. I’m excited. You know, just to switch up the Thanksgiving traditions this year. Yeah. And, you know, just see how it’s done down South. It’s really exciting. How about you, Steven?
Steven Newmark 07:32
I will be at my wife’s family in Pennsylvania. And I absolutely just love it. It’s a few days of just vegging out. I turn my phone off. I don’t open up a laptop. I try to just veg out. I’m also extra excited this year because the World Cup is going to coincide with Thanksgiving holidays. So I get to watch that as well as American football on Thanksgiving itself. So my brain is gonna be nice and shut off.
Zoe Rothblatt 07:55
Well I’ll be tuning into the Thanksgiving Parade. The Macy’s Parade is a crowd favorite in my family.
Steven Newmark 08:01
Yes! Let me tell you two quick things. The first is when I was a little kid I grew up right outside of New York City. Every year, I would watch the Macy’s Thanksgiving parade, every year I would ask to go see it and every year my parents said maybe next year. And I never got to go and I’m so upset. And I really want to take my kids. Now they live in New York City but of course every year we go to Pennsylvania so I’m never in town.
Zoe Rothblatt 08:22
Well, something cool is also seeing the balloons blow up like the day or so before. Totally. But you risk getting stuck in all the traffic if you hang around in the city too long. Well, sounds like it’s gonna be a fun one this year. You know, I’m definitely feeling good going into Thanksgiving with the bivalent shots. You know, we still have the rapid COVID tests. I feel like we know how to stay safe or you know how to try to stay safe and we can implement those as best we can. But ultimately I’m feeling a bit hopeful to have some in-person fun this year.
Steven Newmark 08:55
Yeah, me too. My family, we tried to time it as best as possible. We got most of our flu and COVID boosters roughly at the three week mark before and we’re all in N95 masks like crazy the week before for the last week. So you know we’re gonna test and we’ll see and I’m pretty hopeful though.
Zoe Rothblatt 09:12
I’m hopeful to! Well, Steven, I hope you have a happy Thanksgiving and to our listeners as well enjoy the holidays. We hope you have time to just relax and take it easy. Well, happy holidays everyone and 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 09:42
I’m Steven Newmark. Happy Thanksgiving everyone!
Zoe Rothblatt 09:44
Happy Thanksgiving!
Narrator 09:49
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 9- ACR Convergence: Key Takeaways from the World’s Premier Rheumatology Conference
The Health Advocates share several takeaways from attending the 2022 American College of Rheumatology Convergence (ACR), a meeting where rheumatology health professionals from around the world gather to share best clinical practices and cutting edge-research.
A highlight of the conference was the patient perspective posters, and our hosts got to speak with a few of the patient presenters about their experiences. Stephanie Aleite, a Mental/Behavioral Health Fellow and patient advocate, created “Engaging with the Spoon Theory” to help her patient peers prioritize how they expend energy. “My hope is that by using this, patients feel empowered to make more meaningful decisions about engaging with their support system and really prioritize events that can give the biggest emotional payoff.”
ACR Convergence: Key Takeaways from the World’s Premier Rheumatology Conference
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Stephanie Aleite 00:08
“So my hope is that by using this, patients really feel less of the emotional strain that comes from living with arthritis and that they feel empowered to make more meaningful decisions about engaging with their support system and really prioritize events that can give the biggest emotional payoff.”
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 00:39
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the health care 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
We sure do, Steven. And as a reminder to our listeners, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shoutout to Talking Head Pain hosted by Joe Coe. Season 3 has dropped and Joe is just talking to migraine and headache advocates about their journeys. It’s really great.
Steven Newmark 01:15
Excellent.
Zoe Rothblatt 01:16
So let’s start with a listener comment. Ready?
Steven Newmark 01:19
Yes, yes.
Zoe Rothblatt 01:20
This one came in from Grace K. who wrote: “Great podcast, really informative!”
Steven Newmark 01:24
Thanks, Grace. That’s what we aim to do.
Zoe Rothblatt 01:28
Alright, Steven, that brings us into today’s discussion where we’ll talk about the recent conference, we both attended: the American College of Rheumatology 2022 Convergence, or as people commonly call it: ACR.
Steven Newmark 01:40
Yes, I was there in person and you were there virtually?
Zoe Rothblatt 01:44
Yeah. Once again, I’m so grateful for the virtual option, the hybrid option, for those of us who aren’t ready to go in person or you know, the travel’s a little more expensive. For you it’s a train, for me it’s a flight. I’m just grateful to have that virtual option.
Steven Newmark 01:59
Absolutely. And for me, being there in person, I was grateful that it wasn’t as crowded as it might have been, because it was offered virtually.
Zoe Rothblatt 02:06
Oh, yeah, that’s a good point. So let’s dive in. What is ACR and why does it matter?
Steven Newmark 02:12
Sure. Well, every fall, rheumatology and health professionals from around the world gather to share best clinical practices and cutting edge research at the American College of Rheumatology Convergence. The goal of the meeting is to educate providers about the latest rheumatology science in order to provide better care for their patients.
Zoe Rothblatt 02:28
And you know, from what you’re saying, it’s geared towards providers, and obviously, we’re a patient organization. So I think, you know, the next question is like, what does it mean for patients? And from our perspective, you know, the meeting serves as a really important goal for educating patients about the latest rheumatology science so that you know, our listeners and our community can learn more about their conditions and be more engaged with their providers.
Steven Newmark 02:53
Absolutely. And I saw a lot of patients while I was there, and I know that you Zoe were connecting to a lot of patients online to get important information.
Zoe Rothblatt 03:01
Oh, yes. Spoiler alert. We’ll hear from a few patients in this episode.
Steven Newmark 03:05
Great.
Zoe Rothblatt 03:05
So you know, what are some key takeaways that you learned from the conference? There was a lot of information going around. You know, what either surprised you or was a common theme that you were hearing about?
Steven Newmark 03:16
Well, I think some of what we learned is that there was a lot of discussion about a shortage of rheumatologists.
Zoe Rothblatt 03:23
Yeah, that was a big one.
Steven Newmark 03:24
Yeah, shortage of doctors specializing in rheumatology.
Zoe Rothblatt 03:28
Steven, I saw that they said that in Barbados, there was only one rheumatologist, that was really shocking to me.
Steven Newmark 03:35
Wow, it seems as though less and less MDs are selected as their specialty while at the same time some of the older doctors are retiring. So there’s not that infill that generally takes place in the profession, unfortunately.
Zoe Rothblatt 03:48
Yeah. Okay. What else did you learn?
Steven Newmark 03:50
There was a lot of talk about the need to humanize health care to make medication more accessible and the idea of working together to find better solutions. And working together that means doctors working with other doctors, patients talking to other patients, and of course patients and doctors talking together along with public health professionals.
Zoe Rothblatt 04:07
Yeah, I saw a lot of talk about the… you know, collaboration between the doctor and patient and it’s cool that you felt that in person and I felt that virtually the messages were getting through to us. I also saw some stuff about telemedicine and by some stuff, I mean, a bunch of stuff. You know, one of the speakers mentioned: “Telemedicine is here to stay! Go virtual or go home.” So that was really exciting to hear.
Steven Newmark 04:31
Yeah, for sure. Look, we all know, we’ve spoken about the benefits of telemedicine and to hear it said in blunt terms that this is here and it’s not going away, from the doctors, is good news I think because I think we all appreciate if nothing else, the option of telemedicine.
Zoe Rothblatt 04:46
Yeah, I definitely do. I love telemedicine. Especially for kind of routine check-ins to go over lab work or something like that. It’s really helpful. And you know, lastly, I would say my last big takeaway was that we’re still very much fighting COVID and it was comforting to hear that talked about in a large conference. Because you know, Steven, we always talk about how the public is kind of ignoring COVID. And it sometimes feels like just our community is shouting out. I know this was sort of a community event where it’s like a gathering of rheumatologists. But it was helpful for me to see that there’s still research being done and discussions being had. And critical discussions like: we don’t know the future but what do we know right now?
Steven Newmark 05:25
Absolutely, there was a lot of discussion about that. And, again, it’s… I think a lot of that is the patient’s voice that’s amplifying that. So it was good that we were there. And it was good that you were there as well, most importantly, to get the information into the hands of patients around the country and around the globe.
Zoe Rothblatt 05:40
Well, speaking of patients, you know, patients are invited to submit a poster about an intervention that helped them improve their health. And you know, these patient perspectives are a really important part of a conference that’s geared towards doctors.
Steven Newmark 05:54
Absolutely.
Zoe Rothblatt 05:55
Many of the speakers are just health professionals. It’s really important to have the patient perspective in there, I think, because, you know, there’s really no one-size-fits-all approach when it comes to medicine, and getting that patient voice and patient perspective helps doctors personalize their care.
Steven Newmark 06:11
Yeah, no, absolutely. You know, it’s really important, again, for doctors to see patients at a conference like this. It’s a very different way of seeing patients than doctors normally get. You know, you’re limited to your six minutes, if you’re lucky one on one with individual patients. But here’s an opportunity to see patients coming together. And speaking in a louder voice. Doctors are able to really take a breath, they’re not in a medical setting per se, and trying to provide medical care.
Zoe Rothblatt 06:35
There is a more equal power balance in a conference versus the doctor’s office.
Steven Newmark 06:41
That’s a good way of putting it, yeah. A more equal power balance. The doctor is not trying to rush you out, because they have another patient to see there. They’re settled in for the weekend. And if they could take a little bit more time to look over some of these patient posters to talk with some of these patients and to see what they’re talking about. It’s really important.
Zoe Rothblatt 06:58
For sure, and actually, I was one of those patients. I submitted a poster with Cheryl Crow who is an occupational therapist and she lives with rheumatoid arthritis. You may know her as Arthritis Life’s Cheryl, she’s so awesome. And we wrote about how social media can be used for good and help us on our healthcare journeys. But you know, GHLF also worked with 8 patients on posters, I guess 8 including me, so seven others, and I sat down and spoke to a few of them about their poster and what it was like So Steven, shall we have a listen?
Steven Newmark 07:29
Definitely.
Zoe Rothblatt 07:29
Okay, let’s start with Stephanie Aleite. Hi, Stephanie. Welcome to The Health Advocates. We’re so excited to have you here today to talk about your poster at the ACR Convergence. Why don’t you start off by introducing yourself to our listeners?
Stephanie Aleite 07:44
Hi Zoe, thanks so much for having me. Yes. So I live with rheumatoid arthritis. I was diagnosed 26 years ago and for the last 10 years, I’ve been a patient advocate. I am also a behavioral health fellow and a clinical social worker.
Zoe Rothblatt 08:02
Great, so what brings us here today is to talk about your poster. Why don’t you dive in and tell us about what you uncovered in your poster.
Stephanie Aleite 08:09
So the abstract that I submitted is called engaging with the Spoon Theory. And it features the intervention that I created, which is called: “Spoon Theory Economics”. It’s a cost-benefit analysis that I created to kind of help patients increase the connection they have with their support system. As an RA patient, I really know firsthand just how isolating living with arthritis can be. And as a social worker, I know that isolation can have a really significant impact on, not just mental wellbeing, but physical wellbeing too. And social support is actually something that has been really, really well documented in clinical research. Especially its relationship with positive health outcomes. So we know The Spoon Theory framework, right. And individuals with chronic health conditions have a reduced number of spoons or units of energy that they have to use every day strategically to complete daily tasks. So my proposed intervention, I won’t go into really definite details, but I’ll give a little overview. Spoon Theory Economics engages The Spoon Theory framework by asking patients to do a very simple mathematical calculation when they’re making decisions about social events. Don’t worry, this isn’t calculus. It’s just a subtraction.
Zoe Rothblatt 09:35
Okay, let’s hear it.
Stephanie Aleite 09:36
Okay. So if you can count to 20, and you know how to use the minus sign, you’re good. All we’re doing is calculating the difference between the importance of an event and the amount of energy or spoons required to do it. Both are rated on a scale of zero to 20. So essentially, the total value, the higher it is, it means the greater emotional gain. I’ll give you an example. If you are rating the importance of an event as 15 out of 20 points, but it costs you 10 spoons to do that, then you’re only getting a five out of 20 total value. So you know, you have some decisions to make. The variables I like to consider when determining the importance of an event are the guestlist, the rarity of the event, the fun factor, and the value to my career.
Zoe Rothblatt 10:29
And what sparked you to come up with this, and you know, submit a poster to ACR?
Stephanie Aleite 10:35
Oh, yeah, well, honestly, it’s a huge honor. It’s something I’ve wanted to do for a very long time. So I was so grateful to get the opportunity to do so. But I came up with a theory because honestly, I was so tired of just the emotional and physical burnout of FOMO, like the fear of missing out, you know. I was so tired of pushing myself so hard to attend things, and then paying for it later, because I was scared that if I stopped attending social events, that people would just stop inviting me. So to be honest with you, I did get to a point where I just gave up participating because the resentment and the burnout was just so real to me. And that’s why I created this intervention. I wanted to figure out an easy way to either help me make decisions about events, meaning which events I’m going to say yes or no to, or at a minimum just helped me be more aware of the cost so I can prepare and plan ahead. Like, for example, if I want to go somewhere, and I know it’s going to cost me a lot of spoons, I might ask a friend to drive me or help me in some other way. So my hope is that by using this, patients really feel less of the emotional strain that comes from living with arthritis, and that they feel empowered to make more meaningful decisions about engaging with their support system, and that they do so in ways that bring about like maximum fulfillment and joy, and really prioritize events that can give the biggest emotional payoff, hopefully free of the consequences that come from overspending spoons.
Zoe Rothblatt 12:21
I love that so much. You know, you mentioned you’ve been an advocate for 10 years. And I love the use that you’re putting your advocacy to in creating this tool that other patients can use to help them advocate for themselves, just like you have for yourself. So thank you for all that you do, Stephanie.
Stephanie Aleite 12:36
No, thank you so much. Honestly, this method has really just helped me in more ways than ever before. And I really hope the same is true for others.
Zoe Rothblatt 12:45
Thanks, Stephanie. Ashley had a few things to say about her poster as well. Why don’t you start off by introducing yourself to our listeners.
Ashley Krivohlavek 12:54
So my name is Ashley Krivohlavek. I am in the Tulsa Oklahoma area, and I have been living with psoriatic arthritis for about, I think we’re coming up on my ninth year now. So quite a while. The title of my poster is: “Please Hear Me: How Effective Provider-Patient Communication Improved My Psoriatic Arthritis”. And my objective with this poster was to absolutely give patients the ability to communicate more effectively with their provider. A lot of times I think that patients are like, well, they should just understand that I’m… when I say I’m fatigued… and just go from there. And a lot of times providers think: “Oh, well, they should know that I need to know how many days out of the week, I need to know that you’re fatigued and how it’s, you know, affecting your daily routines” and stuff like that. So what I really wanted to do was kind of bridge that communication gap and prepare patients going into those office visits with the best, most effective information that they can so that they can talk about different treatment options, or you know, what other lifestyle modifications that may be. So that was sort of the goal with us. And I have employed that advice myself many times, but particularly while changing rheumatology provider during the pandemic. But we came out on the other side and it’s actually for the first time in 8… 9 years it’s being well managed. So very grateful for that.
Zoe Rothblatt 14:41
Yeah, well, congratulations! That is such a big accomplishment to, you know, feel your disease is well managed and in control, and it’s really inspiring that you got to that point because of your self-advocacy, and now you’re sharing it with other patients.
Ashley Krivohlavek 14:55
Yeah, thank you. Every day I kind of just pinch myself and I’m like: “Oh my gosh. I can’t believe that I moved at this point with my chronic illness.” When I first started… I always tell the story… But when I first started my sort of journey into this, I would go by the infusion room. And I would always go past the infusion room and think: “Please, I don’t want my disease to progress to that level where I have to have infusions or other medical interventions.” And like about a year into the diagnosis, I was begging to be in infusion room because I was like, I need it. So it was such a short turnaround. But I am really grateful to be where I’m at today!
Zoe Rothblatt 15:41
And speaking of where you’re at today, what inspired you to submit this as a patient poster at ACR this year?
Ashley Krivohlavek 15:48
So for a variety of reasons. One is that I have been wanting to do more of written and information like just writing and getting things out to people that way. And secondly, the ACR is so amazing, because it puts our writers and people that are working in the rheumatology community in the same building as patients. And so what a unique opportunity that you get to have to talk to providers in sort of an informal setting, you’re not really talking necessarily about yourself, but you’re talking in broad about how to improve, you know, the disease for everybody. And it’s such a collaborative sort of feeling that I’m so excited to be able to do that and be able to communicate and see other patients that are doing the same thing as me and advocating because not everybody likes to advocate or discuss their own journey. And that’s totally fine. But I don’t mind at all. So this was perfect for me.
Zoe Rothblatt 16:57
That’s awesome. Well, thank you for, you know, coming on to The Health Advocates and sharing your advocacy with us and our listeners. We appreciate all that you do Ashley and finally now let’s hear from Eileen. Hi Eileen. Welcome to The Health Advocates. We’re so excited to have you here today to talk about your ACR poster.
Eileen Davidson 17:16
Hi, my name is Eileen Davidson. I’m from Vancouver, BC, Canada and I live with rheumatoid arthritis. I’m also a writer for CreakyJoints, as well as a patient partner with Arthritis Research Canada and several other organizations.
Zoe Rothblatt 17:29
And you will also participate in the Let’s Get Personal podcast, I’ll just give a little shoutout there, where you share your RA journey. So today we’re here to talk about the recent American College of Rheumatology conference where you presented a poster. Tell us about that poster and what you did in there.
Eileen Davidson 17:45
Well, I’ve been partnering with Arthritis Research Canada since 2018. And I’ve learned a lot from doing so particularly the studies that have involved exercise, and it was Arthritis Research that really kind of gave me a deeper understanding of how to live with this disease and pace with it. So when I attended the American College of Rheumatology Conference in Atlanta, in 2019, I saw the patient perspective posters. I instantly knew I wanted to do one. However, I waited a couple of years because I really wanted to do it in person, not virtual. So I knew this year, I was going to be presenting with Dr. Linda Li from Arthritis Research Canada on about a 24 hour day with rheumatoid arthritis. But I also wanted to do a poster and I narrowed it down to two studies that really kind of transformed my life. And I was also to really help out with the research. So they were the studies based off of physical activity, tracking my symptoms and my steps every day, as well as working with a kinesiologist on breaking down the barriers that I face as somebody living with rheumatoid arthritis… And I was able to take my experiences, which helps me write better, exercise better, live better and manage with my condition, but also create useful content for people living with the same condition or similar conditions as me and I kind of just wanted to put it all into one poster.
Zoe Rothblatt 19:08
That’s awesome. And I know you touched on this a little, that you went ACR and saw the posters and want to submit one but you know, what was it about seeing them there that made you say, I want to be part of this conference specifically?
Eileen Davidson 19:21
Well, I wanted to also promote patient engagement and research to other researchers and clinicians. And I think it’s really important for actually clinicians to understand that patients can get involved like this because often medical appointments are infrequent, there’s long waitlists, you won’t necessarily find the answers that you need to, but this is an avenue where you can get information and resources for living with your condition outside of the doctor’s office.
Zoe Rothblatt 19:45
Eileen, that’s so great. And I think it’s really amazing that you’re bringing the patient perspective to these conferences and continue to advocate especially for something like exercise, which I know can be really challenging when you live with arthritis. So thank you for all you do. And thank you for sharing with us today.
Eileen Davidson 20:02
You’re welcome. Thank you so much for the opportunity to do this and the support in being able to learn how to write an abstract, because without CrwakyJoints’ help, I really don’t know if I would have even been accepted.
Zoe Rothblatt 20:13
Well, you did all the hard work. So thank you, Eileen.
Steven Newmark 20:16
Yeah. Wow, that was fantastic. Zoe, it’s so great hearing from the patients one on one, you talking to the patients. You know, having been at the Convergence, it was great seeing the patients, but it felt different than the more intimate conversations you had with Stephanie, Ashley and Eileen. So that was fantastic.
Zoe Rothblatt 20:31
Yeah, agreed. It was really a wonderful opportunity to be able to sit and chat with them. So Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 20:41
Well, I hope that everyone learned the importance of inserting the patient voice into the medical community. You know it’s not just in the offices when you get that few minutes with your doctor one on one, but also the louder voice when we’re able to amplify it at larger gatherings of doctors.
Zoe Rothblatt 20:55
Well, thank you. And, you know, I learned that it’s really helpful to debrief after these conferences and hear from each other about key takeaways and just the difference between in person-virtual, it’s good to have these conversations together.
Steven Newmark 21:10
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories, Send your email to thehealthadvocat[email protected]. Or better yet, include a short video or audio clip.
Zoe Rothblatt 21:21
And who knows, whatever you share, maybe included in our listener feedback portion of future episodes.
Steven Newmark 21:26
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 21:31
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, and it will help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 21:48
I’m Steven Newmark. We’ll see you next time.
Narrator 21:54
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
EXTRA Part 1- Non-Radiographic Axial Spondyloarthritis: A Conversation with Dr. Jeff Stark and Patient Advocate Ricky White
The truth is there are more than 100 types of arthritis, but not all of them receive the public recognition they deserve, especially non-radiographic axial spondyloarthritis (non-rad AxSpA).
In the first of a two-part episode, The Health Advocates are joined by rheumatologist and Head of Immunology Medical at UCB, Dr. Jeff Stark, and patient advocate Ricky White who lives with non-rad AxSpA. Dr. Stark and Ricky discuss the challenges in diagnosis, the advancements in treatment, and the research and advocacy being done to improve the patient journey.
“There are barriers for patients around diagnosis and certainly we want for patients with non-radiographic AxSpA to have appropriate treatments,” says Dr. Stark about the challenges patients face, “but there is so much more that can positively impact the journey that patients with this condition undergo.”
EXTRA Part 1- Non-Radiographic Axial Spondyloarthritis: A Conversation with Dr. Jeff Stark and Patient Advocate Ricky White
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Jeff Stark 00:08
I think that there are barriers for patients around diagnosis and certainly we want for patients with non-radiographic AxSpA to have appropriate treatments. But there is so much more that can positively impact the journey that patients with this condition undergo. And one of those is the way that we capture and record this disease or even have the ability to do that in medical records.
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 00:42
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:47
Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:53
Well Steven, today’s episode is a bit different than our usual stuff. We are conducting a two-part episode about non-radiographic axial spondyloarthritis. In these two episodes, we’ll cover what it is, the road to getting a diagnosis, the advancements in treatment, and most of all, how to advocate for yourself when living with a chronic illness like non-rad AxSpA.
Steven Newmark 01:14
In this episode, we will hear from a patient Ricky White on his journey with getting a diagnosis of non-rad AxSpA, how he became an advocate and where he is today.
Zoe Rothblatt 01:23
And we’re also joined by Dr. Jeff Stark to learn about non-radiographic axial spondyloarthritis, the work done to improve diagnosis, and the importance of research in this area. So, you know, let’s dive in. When people think about arthritis, they generally think rheumatoid arthritis. I know that when I bring up my spondyloarthritis, my friends and family often call it RA. Maybe that’s because it’s easier to say than non-radiographic axial spondyloarthritis?
Steven Newmark 01:51
Is that true, RA is easier to say?
Zoe Rothblatt 01:54
I think so.
Steven Newmark 01:55
I guess you’re right.
Zoe Rothblatt 01:56
Well, whatever the reason is, we got to change that!
Steven Newmark 02:00
We sure do, because the truth is that there are over 100 types of arthritis. And today we will be talking specifically about non-radiographic axial spondyloarthritis. Part of being a patient advocate and a health advocate is letting people know about this information so that number one; people who are undiagnosed may hear about it and recognize symptoms and be able to make an appointment and get a diagnosis, and number two; to provide a sense of community for those living with the condition as they hear from us and from others.
Zoe Rothblatt 02:26
That’s very true. That sense of community really, really helps with coping with a chronic illness. So what is non-radiographic axial spondyloarthritis? Let’s start there.
Steven Newmark 02:36
That’s a great question Zoe, and we’re joined here today by Dr. Jeff Stark, the Head of Immunology Medical at UCB. Jeff is also rheumatologist and spends a lot of time and focus on non-rad AxSpA. UCB has invested in years of research and understanding of this chronic disease. Dr. Stark, how do you describe non-radiographic axial spondyloarthritis to patients and what makes it a particularly challenging disease?
Dr. Jeff Stark 02:59
Thanks Steven. And I love your abbreviated form of non-rad AxSpA because it is something of a mouthful. You know, non-radiographic axial spondyloarthritis, or sometimes we call it Nr-axSpA, is a form of arthritis and it belongs to a larger family of diseases that we call axial spondyloarthritis. And these are inflammatory conditions that can affect the spine and the sacroiliac joints. And what that means is that for the majority of patients with this condition, they really experience low back pain as a primary symptom of their disease. However, symptoms aren’t limited to that area, we actually see that pain and stiffness can occur in many other parts of the body as well. The diagnosis of non-radiographic AxSpA can actually be a challenge, but is sometimes helped by finding imaging changes on certain tests like MRI scans. But these patients by definition, have no X-ray changes and that can often lead to a misdiagnosis or their condition improperly being assessed as a mild form of disease even though the symptoms may be severe. So because of these challenges, non-radiographic AxSpA patients even today can experience many years of delay in their diagnosis. The data actually tell us that this delay can be up to eight to 10 years for some patients and unfortunately, during that time, they may receive inappropriate treatments or be treated in inappropriate care settings before they finally land in the office of a rheumatologist where they can receive a proper diagnosis and proper care. This misconception as well that non-radiographic AxSpA is a milder form of disease, and unfortunately, for many patients, that’s just not the case. We see these folks have a substantial burden of disease in fact and these symptoms that they experience of pain and stiffness can really affect their quality of life through changes such as chronic pain and a reduction in their ability to function every day.
Steven Newmark 04:53
Thanks for sharing and providing those insights. Our listeners know how much we talk about time to diagnosis and how important it is to get that diagnosis as timely a manner as possible in order to improve the quality of life. And there’s clearly a lot of room for improvement in the journey to diagnosis with non-rad AxSpA. Can you share a little more on how UCB is working to change this?
Dr. Jeff Stark 05:13
Absolutely. And thanks for asking that question, Steven. You know, I think that there are barriers for patients around diagnosis. And certainly we want for patients with non-radiographic AxSpA to have appropriate treatments. But there is so much more that can positively impact the journey that patients with this condition undergo. And one of those is the way that we capture and record this disease or even have the ability to do that in medical records. So for several years, UCB worked in partnership with professional rheumatology organizations as well as patient advocacy groups in soliciting a group called the ICD-10 Coordination and Maintenance Committee (C&M) and this is a group that oversees the diagnostic codes that are available to physicians and health care providers in the United States. We requested along with those community partners the creation of a new ICD-10 code specific for non-radiographic AxSpA. So prior to that time, there was actually no way to record such a diagnosis in electronic medical records. We’re really happy that as a result of those concerted and collaborative efforts that in October of last year, the committee endorsed the creation of a new subcategory for non-radiographic AxSpA, meaning that now today, physicians and health care providers in the US can actually record a specific diagnosis of non-radiographic AxSpA. And that’s important for many reasons, but perhaps most importantly, because it recognizes and validates non-radiographic AxSpA as a real legitimate and separate condition from other diseases in this larger category. So this has been an exciting update we think for the community, but especially for people who are living with this condition that traditionally has been under-recognized and undertreated. We also think that proper coding will help to improve diagnostics. We think that it will help to reduce the delay to diagnosis. And actually really importantly, now that we can track and identify patients with this condition in a very specific way, it’s going to allow us to study these patients and generate real world data about the journey that they undergo the kinds of treatments, that they receive the burden of their disease, etc. And I know I think in a future episode that you’ll be hearing from one of my colleagues, Amanda Ledford in greater detail on this topic. So excited for that to happen at a point in the near future. The other, you know, sort of activity that UCB has been involved in is creating resources to really support the health care community and lead to an earlier recognition and timely referral and diagnosis for these patients who may have undiagnosed axial spondyloarthritis. Last year, UCB introduced something called the axSpA-ID Query Set, which is actually a tool or a platform that’s designed to be used with electronic health care records. And what this set does is it puts a customizable clinical criteria set in the hands of health care providers that helps them. It’s sort of seamlessly embedded in their electronic record and helps them to identify patients who have a higher likelihood of AxSpA so that they can be referred on to an appropriate care setting for a formal evaluation that we hope leads to an accurate diagnosis and appropriate treatment to follow.
Steven Newmark 08:27
That’s really interesting. In terms of treatment, I’d love to hear more about the importance of clinical research in this area.
Dr. Jeff Stark 08:33
Absolutely. So there have been some significant advances, really in the understanding of what drives the inflammation of AxSpA over the last two decades. But a deeper understanding of these topics, really kind of the immune system dysregulation that’s going on may ultimately hold the key to raising the standard of care and optimizing outcomes for patients essentially, the more we understand what’s going wrong with the immune system, what’s causing this abnormal inflammation to be present, the more opportunity we have to target those abnormalities and improve the symptoms that patients with non-radiographic AxSpA experience. UCB continues to study non-radiographic AxSpA as a distinct condition with separate and dedicated clinical trials, which we really feel helps to distinguish it as a unique condition and give it the attention that it deserves as a separate disease state. Actually coming up in the very near future, just next week, we’ll be at the ACR Convergence 2022 Meetings, sharing data across our portfolio, but including data specifically for non-radiographic axial spondyloarthritis, and also hosting a medical symposium. They’re on both axial spondyloarthritis and a related condition called psoriatic arthritis to help educate the community about advances in these areas. So you know, I think just to sum up, UCB is committed to innovative research and development to help improve the lives of patients who live with this tough condition called non-radiographic AxSpA. UCB has one approved treatment option for non-radiographic AxSpA that we produce today, but we’re actively investigating other future potential solutions and are excited about those possibilities down the road.
Steven Newmark 10:15
Well, thank you Dr. Stark, I think we’re all excited to see what’s next for non-rad AxSpA patient care. As you noted, many people have a long road to getting a diagnosis. And hopefully with the work that you guys are doing and others, we can cut that time down.
Zoe Rothblatt 10:28
Well, that was really wonderful to hear Dr. Stark. And as we continue the conversation, let’s hear from someone who has personal experience. We have with us here today, Ricky White an individual living with non-rad AxSpA.
Steven Newmark 10:41
And he has graciously agreed to come on the podcast to share his story.
Dr. Jeff Stark 10:44
Ricky, it’s really, really great to meet you through the magic of the internet today, and really appreciative that you’re willing to join this conversation and share your story. I think one of the things we heard in the first part of this podcast is the really long journey that many patients with your condition undergo and wonder if you could share with us a little bit about what that journey looks like for you.
Ricky White 11:04
Yeah, thanks. Great to meet you, too. So my journey started… I was officially diagnosed in 2010. And I probably should say this upfront is officially my diagnosis was ankylosing spondylitis not non-rad AxSpA but because that term didn’t exist when I got diagnosed back in 2010. So if I was to be re diagnosed today, I would fall under the category of non-rad AxSpA. So just put that out there in case anyone reads anything about me on the internet it will refer to ankylosing spondylitis. But that’s officially my diagnosis. And so part of the reason it stays my diagnosis, though, is to touch on points you mentioned earlier. There’s not always the treatment options available to patients with non-rad AxSpA because this is relatively new to a lot of rheumatologist and the problem you mentioned with the coding issue is with the higher classification, you know, and we both know that that’s not true, that one’s not necessarily worse than the other. But there are more treatment options available to me so downgrading my diagnosis to non-rad AxSpA actually do me more harm than good. So I think that’s one thing to point out. And you very, you explain that very well earlier. So hopefully that makes sense to everybody why that’s the case. So I was diagnosed officially in 2010, I actually started suffering with symptoms just three and a half years prior. So that’s very short for most patients. And I got very lucky. So I was a registered nurse at the time practicing in England, I used to work on the ICU, and I was getting sciatic pain and lower back pain. So I went to see my doctors over and over again, short courses of anti inflammatory drugs: “Oh, you’re a nurse with back pain. That’s pretty common. It’s almost part of the job description,” right? So it was kind of just passed off as well. You know, make sure you do your proper moving and handling techniques correctly, and you’re doing all the things you should be doing as a nurse to prevent further injury. But it kept persisting. And I noticed that this was happening almost cyclically, like every three or four months. So back in England, we have this team of doctors called occupational health doctors. And so they’re basically doctors and nurses, for doctors and nurses right there on site in the hospital. If you have a work related problem, you go see them and they can check you out. So I went to see one of those and he says: “Oh, you actually you don’t have lower back pain, you have inflammation in your SI joint.” And so then pain relief was pretty much the same. But it was a different cause a couple of years after that I was getting worse and worse to the point where I was really struggling to work. I went to see my GP and at the time, she was less receptive to the idea that it might be something other than lower back pain. But the luck I had was one of the doctors I was working with mentioned to me after I was talking to him in the coffee break room: “Have you been tested for ankylosing spondylitis?” And I said: “No, what’s that?” Right? So I had no idea what it was, even as a nurse. I ended up getting tested for HLA-B27 and it was positive and they referred me to rheumatology. And that’s kind of how it progressed.
Dr. Jeff Stark 13:48
Yeah, that’s so interesting. And I smile a bit to myself when I hear you say three and a half years is a short journey to diagnosis. It is truly compared to the average but still a very long time for somebody to, you know, be wondering about what’s going on and whether they’re getting the right treatment, we sort of hope I think for many patients that they land in a rheumatologist office, because that’s the specialty who really has expertise in these disease states. I wonder, you know, what that looked like for you and when you knew you’d found the right doctor if you have indeed, you know, found the right one today and what do you look for in a rheumatologist? Who, you know, you feel like provides you the right kind of care, the right approach to treating this condition?
Ricky White 14:27
So I think I definitely didn’t have the right rheumatologist when I started my journey. I definitely have the right rheumatologist now. Part of that is because I moved 3,000 miles to a different country in a different health care system. So my very first rheumatologist basically said to me: “Let’s do an MRI scan. If you’ve got ankylosing spondylitis, your joints will fuse together and then you won’t have pain anymore.” And I was just gobsmacked when he said that, my jaw dropped to the floor, right. I was used to being around bad news working in an ICU, I was used to, you know, giving it and I’ve been in those stressful situations, but I wasn’t used to receiving it, right. And that was probably one of the worst things you probably could say to a patient, right? It wasn’t helpful. There was no plan of action, there was nothing. And the next rheumatologist I saw, he said: “You’ve got severe AS let’s start treatment now, we’re gonna give you a steroid shot,” bang, bang, bang, all the treatment, just everything went from snail’s pace to 100 miles an hour in the space of one meeting with him. And so that really is when things changed. And after I moved to the US, I wasn’t insured for the first year when I was here, I was an immigrant, right, so I wasn’t eligible for Medicaid or anything I had to pay out of pocket. Then we got insurance from my wife’s work, and then everything kind of picked up from there. And I’ve seen a few rheumatologists with my current health care provider who have all been great. As for kind of what to look for, I think there’s this misconception that people have that much choice that they can choose the right doctor, that’s not the case for most of the world, right? You don’t have the privilege of going: “Well, this doctor is not right for me, let me go see the other one two miles down the road.” That is not realistic for most people in the world, even in the U.S. So I think there’s that misconception that you can find the right doctor, right. I always look at it as it’s a relationship, because you’re going to be shown very intimate parts of your health. And so you’ve got to be comfortable with that person. Obviously, that is the most important, if you’re not comfortable sharing with that person, then maybe they aren’t the right doctor, you need to try and look elsewhere. But just because they may not feel like the most qualified or the right doctor at the time doesn’t mean they’re not still going to give you the right care. I think most of the problems patients have come down to miscommunication and styles in communication. The doctor doesn’t quite know what the patient’s telling them, or misinterprets that and the patient doesn’t really want to know how the doctor wants to receive information. So I think if you can figure out how you can communicate well together, like any relationship, then I think that really is going to set you off on the path to kind of getting the right treatment, being upfront about what your goals are, because what your goals are and what your doctor’s goals for you are, may not be aligned. And so you really have to communicate that and be upfront about what your goals are as a person. Because once your goals align, then the treatments will get you there.
Zoe Rothblatt 17:02
Ricky, you touched on, you know what you’ve heard from other patients. I’m wondering if you’ve found a community of other people living with AS and non-rad AxSpA, what that means to you?
Ricky White 17:13
Yeah, I mean, community is key, right, to dealing with this because this isn’t just a physical condition, right? You’re in pain constantly. Because a mental health aspect that plays into this, right? One point myself, I was clinically depressed, I didn’t leave my studio apartment for three months, because I physically can’t walk to the bathroom, barely. So you know, community is really what got me over that period of depression and actually got me on the road to good treatment and really learning about the condition and about how it affects me and really helped me be introspective about why I’m doing the things I’m doing and what I need to do to overcome the things that my body is feeling. So I’ve been in several communities and the platform use changes. Now it’s you know… it could be Facebook groups or anyway. There is a lot out there if you’re willing to look for them. So my advice always to people who are newly diagnosed is go find a community. Go search. Where do you like to be? Is it Facebook? Is it in forums? Is it in person? Do you want to do an in-person meeting? Where are you most comfortable, and then I guarantee there’s a community there for it. And so one of the many hats I wear in life is, I’m the president of a nonprofit called Walk AS One. We’re an all volunteer organization that serves people with AS and AxSpA all around the world. And the whole reason we exist is for community right? To give people a place to come and talk to each other.
Steven Newmark 18:24
It’s great that you’ve created this community or have joined in this community. How do you use this community to advocate for yourself and for others?
Ricky White 18:32
I think the days of me advocating for myself are gone. I find I get more benefit from advocating for others than myself. So you know, my disease is well controlled. Now I’ve got good treatment, I’ve now got the doctors around me. More importantly, I now have the knowledge that I have about the condition and how to treat my symptoms on a day-to-day basis because it’s ever changing. So I tend not to advocate for myself, I tend to advocate for others and that gives me more reward. So how I do that is I think information is key. But a lot of people get this diagnosis, but they’re not necessarily given the information they need. I know when I was diagnosed I wasn’t told about NASS, which is the National one at the time… it was the National Ankylosing Spondylitis Society in the UK, they’ve since changed the name to Axial Spondyloarthritis Society. But so I wasn’t given that information. But I went out and I found that community and then I got all the information I needed and the community and the support. So I try and be that person too. When I hear someone who’s newly diagnosed is the first thing I do is, here’s the support groups, you’re going to need them and explain why. And then I try and give them the information in a way they want to receive it. But also at a level they’re willing to receive it as well. Because, you know, as a nurse, I could talk on a similar level to Dr. Stark, but that will go over a lot of people’s heads. So you kind of have to talk at the right level for them and where they’re at in their journey.
Dr. Jeff Stark 19:48
That’s fantastic, Ricky. Really, really exciting to hear about how you’ve leveraged your own experience for the benefit of a larger community. And really great to hear that you’ve come so far in your own journey and that your own condition is well controlled. At this point, I wonder if you have any tips or tricks from your own experience of living with this disease of how you’re managing your axial spondyloarthritis, and how you’re maintaining that good condition that you find yourself in today.
Ricky White 20:14
I think the key for most people is to keep an open mind because your condition is gonna evolve over time, and so much the ways you approach and treat your condition. I found in the early days, I don’t do it now, but in the early days, I used to write things down how I was feeling on a particular day, what my pain was what I did, and did it work. I was very analytical, right, I looked at the data, that’s just how my brain works. I think writing things down is still good, even if you’re not putting numbers to things because it lets you be honest with yourself about how you’re doing. And then you can treat it appropriately. If you’re ignoring a symptom, or you’re pushing, you know, this depression down. Or if you’re ignoring something that’s clearly upsetting you, then you’re not going to treat it and it just blows up in your face later down the road. Right? So being honest with yourself, I think is the most important thing. And always have a plan B. That’s the other tip, always have a plan B, right? Maybe I’m going out for drinks tonight. And you know, I have a flare, I can’t go out for drinks anymore, I’ve got a plan B. Maybe I’ll FaceTime and say hi, or something you know. So always have a plan B and educating other people so they can help you is also important, right? Because there are days when I maybe I’m walking a certain way or act in a certain way, and my wife will turn around to me and tell me: “Hey, I see what you’re doing. You need to go do this,” right, because I’m ignoring it. And then she tells me now, this is what we do. And this has happened. Building that support network around you is definitely a big improvement to help as far as how I manage my own condition. While right now I’m on anti-TNF injections, that helps a lot. And the thing that by far is helping me most is exercise. So I’m a martial artist, and doing that amount of stretching. And the conditioning that I do with the martial arts has helped me immensely because it’s not just about exercise. And it was about building functional strength. So on my bad days, I’m still strong enough to stand up straight and all this kind of stuff. So I mean, a lot of doctors will tell you not to do impact sports, when you have this kind of diagnosis. And I say do what makes you happy. If it’s making you happy, you’ll figure out how to make it work.
Dr. Jeff Stark 22:09
Great. Thanks for sharing.
Zoe Rothblatt 22:10
Yeah, thank you both so much for joining us today. You know, there’s so many learnings to take away and I really appreciate having both sides of the conversation patient and doctor and all of us advocates to coming together. So thank you. Well, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 22:27
I learned about you know, the importance of talking to doctors and professionals and scientists who are out there working to try and improve the lives of patients. You know, we spend so much of our time talking with patients and advocating on behalf of patients. It was great to hear from a doctor like Dr. Stark who’s out there and actually trying to work to improve timely diagnosis and improve outcomes for patients. So that was great.
Zoe Rothblatt 22:51
And I learned from Ricky just how much goes into caring for yourself and the different aspects of what you can do to care for yourself and advocate for others as well.
Steven Newmark 23:02
We hope that you learned something too. This episode is made possible with support from UCB sponsor the Global Healthy Living Foundation.
Zoe Rothblatt 23:10
And we hope you’ll join us for part two. In part two of this series we’ll have Amanda Ledford describing some of the access and policy challenges in diagnosing non-rad AxSpA.
Steven Newmark 23:19
Thanks as always for listening and a special thank you to Dr. Jeffrey Stark and Ricky White for joining us today.
Zoe Rothblatt 23:25
Yes, thank you so much. I’m Zoe Rothblatt.
Steven Newmark 23:27
I’m Steven Newmark. We’ll see you next time.
Narrator 23:33
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 8- The 2022 Midterm Elections: A Hot Take on What’s at Stake
The 2022 midterm elections are underway, and The Health Advocates are discussing key results for Senate, House and state races. The hosts dive into the biggest surprises of the election so far, what it means for our community who lives with chronic illness, and how the election will chart the course for future health care access, affordability, and public health.
“In terms of just the pure politics of it… there was an expectation late in the race, that there would be some kind of a red wave or a strong Republican showing that failed to materialize… it looks as though the Republicans are poised to take back the House, but not by a particularly robust margin and the Senate is still too close to call,” says Steven Newmark, Director of Policy at GHLF.
The 2022 Midterm Elections: A Hot Take on What’s at Stake
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
In terms of just the pure politics of it, there was an expectation late in the race that there would be some kind of a red wave or a strong Republican showing. That failed to materialize. As of this morning, it looks as though the Republicans are poised to take back the House but not by a particularly robust margin and the Senate is still too close to call. 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, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the health care 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 00:56
We sure do. And as a reminder, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout out to Let’s Get Personal, a new podcast hosted by our colleague Dr. Daniel Hernandez. Dr. Hernandez speaks with rheumatoid arthritis patient advocates about their treatment journey, you know, both the emotional and physical aspects and also sits down with rheumatologist Dr. Grace Wright to hear from her about working with patients.
Steven Newmark 01:23
Yeah, it’s great to hear about that connection between the emotional and physical aspects of our health.
Zoe Rothblatt 01:28
It’s so important. So let’s start with the listener comment. Ready Steven?
Steven Newmark 01:32
I am ready.
Zoe Rothblatt 01:33
This one came from Jamie S. who wrote: “Great podcast. Thanks for keeping me informed.”
Steven Newmark 01:38
Yeah, well, there’s a lot to be informed about. So we’ll keep doing what we keep doing. Thank you, Jamie.
Zoe Rothblatt 01:44
Speaking of being informed, our biggest news of this week is the election. Steven, I know you have a political background. You’ve been around and seen many election nights. And I’m hoping you could share your expertise with us today. What are we seeing so far?
Steven Newmark 01:59
Sure. So let me first start by saying we’re recording this on Wednesday morning, right after Election Day. So bear that in mind, as we go through the results. We’ll talk about how this is going to affect health policy going forward. But in terms of just the pure politics of it, you know, there’s a few things, there was an expectation late in the race, that there would be some kind of a red wave or a strong Republican showing. That failed to materialize, it seems more like a red ripple, not necessarily a wave. As of this morning, it looks as though the Republicans are poised to take back the House, but not by a particularly robust margin and the Senate is still too close to call. So let me just pause there and speak specifically about the Senate. As of now it looks like it is a 48 to 48 tie with four races yet to be called. One is Alaska, which has essentially two Republicans running against each other. So that is going to go into Republic hands that would make it a 49-48. And then the three other races that as of this morning that are too close to call are Georgia, Nevada, and Arizona. So Nevada looks like it’s tipping towards the Republicans, Arizona seems to be tipping in the direction of the Democrats, which means that the balance of power could hang in Georgia. Now Georgia, you have the Republican candidate Herschel Walker facing the incumbent candidate, Raphael Warnock and both are essentially tied at 49%. However, under Georgia rules, you need to secure 50% of the vote to win the election. If neither candidate secures 50%, which seems to be the likeliest scenario that will go to a runoff in early December. And just like it was in 2021, in January of 2021, that race could determine who controls the Senate, because if the Democrats get 50 seats with a tie breaking vote of the vice president that would give control to the Democrats just as it had for the past few years. So that’s where we are in the Senate as of this morning. It’s hard to get exact numbers on the house. But it seems pretty clear that the Republicans are going to have control of the House. The question is: how large that control is going to be?
Zoe Rothblatt 04:00
So yeah, talk to us about that. What does that mean? Like how large the control will be? What does that mean for policies being passed?
Steven Newmark 04:08
So that’s a great question. The larger the lead, the more likely we are to keep that lead, of course, in two years when the house is up for election again. But more importantly, in the interim, I’ll reverse it and say: the smaller that lead, the more you have to rely on each individual House Republican to advance your agenda. So anytime you want to do something, if you look at the last two years in the Senate, for example, the Democrats had 50 senators, and every time they needed to pass something, they needed to get all 50 senators on board or reach across the aisle, which was hard to do in our current state of politics. So if in the house, you have a very close margin, it gives a lot of power to each individual member of the House with a lot of these House members coming from the far extreme of the Republican Party, it’s going to give those folks a lot of power as we go into the next two years to not necessarily affect actual passage of legislation per se, but to advance what I would call the conversation.
Zoe Rothblatt 05:02
So Steven, I’m hearing a lot from you. And I’m wondering if this is overall what you expected to see from this election?
Steven Newmark 05:09
You know, that’s a good question. Of course, that’s top of mind. Is this what folks expected? Was there actually an expectation of a red wave? I would say, for me, this is generally what I expected. I think it was baked into the cake after 2020 that Republicans could take back the house. I think it’s only happened twice in the last 100 years that an incumbent president has actually gained seats in the House of Representatives, two years after first being elected. The last time that happened was in 2002. So it was essentially baked in. Plus, when you add in the redistricting that occurred after 2020, Republicans were poised to pick up between 10 and 11 seats, essentially, without doing anything else. So that was no surprise in the sense that they won. I’m a little surprised that Republicans didn’t do better and pick up more seats. Although again, there’s still a lot of races outstanding, but I’m definitely surprised that the strength of Democrats in Ohio where Democrats actually picked up some house seats. That was surprising. And Democrats had a strong candidate running for Senate who lost but perhaps his coattails, Tim Ryan was the Democratic candidate for Senate, but perhaps his coattails help pick up some of those down ballot House races. The Senate’s tough to call but it looks like as of now, all incumbents are going to be reelected with the possible exception in Georgia and Nevada. I think about a year ago, I would have been surprised that Nevada would have flipped from Democrats that Republican but it’s a toss up state to begin with. And I want to say I was surprised, but I thought it was interesting how much more Republican of Florida moved. Ron DeSantis was reelected by a strong margin, a healthy margin, and they were more Republican votes in 2022 in Florida than they were in 2020. So I think it’s fair to say Florida, which had been thought of as a purplish, reddish, purplish state for such a long time, I think it’s fair to plop Florida firmly into the red category moving forward.
Zoe Rothblatt 06:58
Steven, this is all really good stuff. Thank you for breaking this down. You know, if it’s not too much to ask, what else are we seeing?
Steven Newmark 07:05
Well, I also find fascinating and I will say this in a very positive light. Women have done very well at the gubernatorial level across the country.
Zoe Rothblatt 07:12
Let’s give a round of applause for that.
Steven Newmark 07:15
Republican women are projected winners in South Dakota, Alabama, Arkansas, and Iowa and Democratic women are projected winners in New York, Kansas, Massachusetts, Maine, Michigan and New Mexico. And that will make 10 Women who would be serving as governor simultaneously breaking the previous record of nine. And there’s still races in Oregon and Arizona that have yet to be projected, which could give us at least 12 female governors. Uou know, a few other just passing points, you asked me if I was surprised or what I thought. I think overall, I wasn’t surprised because the actual polls, dare I call them mainstream polls were actually on point in this election, or very close to being on point. There were some outlier polls that that look to skew the numbers towards more of a red wave. But eliminating those from the polling results. We essentially got the results that most pollsters were anticipating which I found interesting because polls have such a negative connotation nowadays. The other thing it’s definitely worth mentioning, is that Donald Trump, still the front runner for the Republican nomination in 2024, was definitely weakened last night. I’m going through the results as best as I can, district by district and state by state, but I haven’t come across one candidate that Trump backed, one of those Trump-backed candidates who actually overperformed to win an election last night. There were obviously Trump-backed candidates who won but they essentially garnered the votes that were expected. I mean, the biggest black eye for Trump is going to be a toss up between Pennsylvania and Georgia. In Georgia, I think it could be said that you could have put a rock in a suit and put an R next to their name and they likely would have won that Senate race. They had Brian Kemp at the top of that ticket who easily won governor in Georgia last night, you had Brad Raffensperger, Secretary of State ran a statewide campaign last night and won pretty easily and it seems as though any Republican could have been pulled up by those coattails. But Herschel Walker who was Donald Trump’s hand picked candidate is in a real fight. So we’ll see how that turns out, likely in the runoff. Also Trump’s shall we say nemesis, if you will in the primaries is potentially Ron DeSantis and Ron DeSantis won handily without any help from Donald Trump and he pointedly attended separate rallies from Trump two nights ago in Florida. He pointedly did not mention Trump in last night’s speech. So we’ll see where this goes.
Zoe Rothblatt 09:21
Yeah, we’ll see where this goes for sure. All right, Steven, I know you’re up late watching all this What’s been your biggest surprise so far?
Steven Newmark 09:28
Biggest surprise for me was definitely representative Lauren Boebert from Colorado. She was recently elected as a Republican very far right, somewhat popular, if you will, amongst a certain contingent of Republicans. Her race was expected to be somewhat of a cakewalk. In fact, to the closest polling there had her rival you know, within double digits. Yet she is in a fight right now. It looks like she’ll pull it out. But there were a lot of people who voted for her clearly in 2020, who did not want to see her return to Congress, which was surprising to me at least.
Zoe Rothblatt 09:57
What’s been your biggest non-surprise then?
Steven Newmark 09:59
I think when it comes back to the polls and how accurate they were ultimately. How expected a lot of this was. You could even go back two years, you know, Republicans going to take the house, they perhaps didn’t recruit enough candidates or the proper candidates, if you will to take back the Senate, win more governorships, so they didn’t get the red wave that they were hoping. So I think, you know, I think it should have been expected even if the media didn’t play that narrative at the end there. And also, actually, I don’t know if I’d call this a non surprise but the most positive aspect of last night for me is how many candidates have conceded. Candidates who had been what they call election deniers, things of that nature. I’m thinking of the Republican candidate for governor in Wisconsin, candidates in Pennsylvania, these folks have conceded they’re not threatening litigation, and they’re not claiming that the election results are false. And ultimately, that’s a very good thing for democracy. So that leaves me hopeful, generally speaking. That leaves me hopeful as well. All right, Steven, as we always do, let’s bring things back to our community who live with chronic illness. We talked today about a lot already so let’s transition a bit to talk about who’s going to be in charge of the house and you know what this all means for health policy going forward? Yeah, let’s talk about what this means for us and health policy. So the House is going to have a new speaker, likely, it’s probably going to be Kevin McCarthy. He’s not really a very strong ideologue but he’s someone that tends to tow the generic Republican line. But as we mentioned, in a closely divided house, he’s going to have to rely on each of his members. So we’ll see where some of his members tend to pull him. Probably the biggest issue when it comes to health and health care is the pandemic. Yes, very important for our community. Let’s dive into that. Definitely. So in looking at pandemic or epidemic resources, I would include monkeypox, COVID, I could also include general funding for vaccine uptakes, general public health outreach regarding the flu, RSV…
Zoe Rothblatt 11:49
Yeah, you know, there’s still an official ongoing announced public health emergency and national emergency declaration by the executive branch. And what this really means at the end of the day, is that allows for funding and for a response team, you know, to tackle the pandemic epidemic and have resources available. So you know, what’s going to happen now as leadership changes?
Steven Newmark 12:10
Right. So I think there’s a few things and Republicans are likely to push to dismantle a number of lingering pandemic policies. One of their top pile policies that they’re going for is the vaccine mandate amongst the US military, according to multiple news outlets. They’re also looking to essentially cut funding or certainly not authorized any new funding with regards to pandemic responses.
Zoe Rothblatt 12:31
And you know, what does that mean for our community? It means it’s not going to be a priority anymore. And we already know that many in our community are still isolating and taking COVID precautions. And there’s already been this general feeling in the public that COVID is over and our community is just really feeling left behind. And I think that if leadership comes in, and all these funding and responses go away, it’s just going to leave our community feeling more alone than ever.
Steven Newmark 12:57
Yeah, for sure. And I would say to be prepared for that to happen. Republicans, as I said, are not likely to advance any funding. So if that’s not going to get through the House of Representatives, new funding just won’t happen. In terms of existing funding, there are likely to be calls to cut funding. And while Democrats may control the Senate and certainly control the veto power with the presidency, there are certain must pass pieces of legislation such as Defense Reauthorization Act and other such things that Republicans could try to attach funding cuts to regarding the public health emergency.
Zoe Rothblatt 13:30
And what about around the states? What does the election mean for COVID responses around the states?
Steven Newmark 13:36
You know, again, it’s a state by state thing, but certainly in states that have tilted Republican, a lot of what they ran on was cutting funds with regards to this funding. There’s also even in Congress, you know, there’s a potential that some committees are going to look to clawback COVID aid leftover from states.
Zoe Rothblatt 13:54
Interesting. What does that mean?
Steven Newmark 13:55
Well there’s chatter, that they may look into states that haven’t spent all their funding and essentially ask for the money back.
Zoe Rothblatt 14:02
Yeah, that’s interesting. What about the non pandemic stuff? What healthcare agendas do we have on our mind?
Steven Newmark 14:08
I would say first and foremost, would be cuts to Medicare, and also to Social Security. There are… there’s a lot of chatter in Republican circles about cutting Medicare generally. But frankly, I cannot imagine they would actually go through with this. It’s terrible politics, and ultimately, it would never get signed into law anyway.
Zoe Rothblatt 14:24
Steven, what about drug pricing? I know we’ve been talking a lot about this recently, especially with the Inflation Reduction Act. What does, you know, a change in leadership mean for drug pricing?
Steven Newmark 14:33
Yeah, I would say again, because of the divided government, it’s going to be near impossible to get any new legislation when it comes to drug pricing. Reducing drug costs was a priority for the last two years. It got through in a tepid way as part of the Inflation Reduction Act. But now it actually has to be implemented. So you know, we’ll see how the implementation goes. But there may be a lot of pressure to slow walk the implementation.
Zoe Rothblatt 14:56
You know, something we advocate for is transparency among Pharmacy Benefit Managers, the so called middlemen that work between, you know, your insurance company and the drug plan and stuff. And, you know, I think I saw, correct me if I’m wrong, but that seems to be one of the few drug pricing issues that’s bipartisan agreement.
Steven Newmark 15:14
Yeah, for sure. In fact, and Representative Buddy Carter from Georgia was a Republican said that if Republicans win the house, he would ask leadership to make PBM reform the subject of one of the first 10 bills in Congress. So we’ll see if that happens. And that does have the possibility of actually passing.
Zoe Rothblatt 15:29
And you know, that would be a huge win for our community who, you know, often we take drugs to treat the complex conditions, and you know, they’re expensive. There’s a lot of behind the scenes work. So you know, it’d be good to see some action at the federal level. And, Steven, you know, I’d be remiss if I didn’t mention this, what about repeal of the Affordable Care Act?
Steven Newmark 15:49
Well, I think that ship has sailed. I don’t even think Republicans have the energy to even try to do anything with that. But one never knows. Stay tuned.
Zoe Rothblatt 15:56
Yeah. Well, with the Affordable Care Act on our mind, you know, it’s a good reminder that it is open enrollment season. So definitely, you know, check out your health insurance and get enrolled, because it’s just so important to have that coverage. Alright, Steven, that brings us to the close of our show. What did you learn today? And dare I say, what did you learn from yourself because you are clearly the expert on this episode?
Steven Newmark 16:20
You know, I guess I learned just in terms of where we are, it’s Wednesday morning again, early Wednesday morning, and what I learned from today is we’re not too far off from where we probably expected to be two years ago, 18 months ago, maybe even 10 months ago. So in the grand scheme of things if that’s where you expect it to be that’s not very fascinating, but it is at least interesting.
Zoe Rothblatt 16:39
And for me, one of the most interesting things I learned from you is how you’re framing these results in terms of the future and next elections and policy priorities going forward. So that was really helpful.
Steven Newmark 16:51
We hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to thehealthadvocat[email protected]. Or better yet, include a short video or audio clip.
Zoe Rothblatt 17:02
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 17:07
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 17:12
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. We’re also on YouTube now, so check us out there. I’m Zoe Rothblatt.
Steven 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.
S5, Ep 7- Cancer Fashionista: Advocating in Style
In this episode, Melissa Berry, founder of Cancer Fashionista and a fashion and beauty publicist, shares how her breast cancer diagnosis sparked her to become an advocate. Through her blog, she now provides fashion, beauty, and wellness advice to help patients feel good about themselves and feel better prepared to manage their care.
“Your doctor is your consultant. Doctors are not gods; they’re human beings. So go to them with information and questions, and come up with a health plan for you. I think that’s just the golden key right there,” says Melissa.
Cancer Fashionista: Advocating in Style
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Melissa Berry 00:08
Your doctor is your consultant. Doctors are not gods. I mean, they’re human beings. So go to them with information and questions and come up with a health plan for you. I think that’s just the golden key right there.
Steven Newmark 00:23
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:32
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:37
Our goal is to help you understand what’s happening in the health care 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
We sure do and as a reminder, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout-out to Let’s Get Personal, a new podcast that’s hosted by our colleague Dr. Daniel Hernandez. In this podcast, Daniel speaks with rheumatoid arthritis advocates about their treatment journey, you know, both the emotional and physical aspects. And what’s pretty cool is that Daniel also sits down with Dr. Grace Wright to hear from her about working with patients. So definitely check it out.
Steven Newmark 01:19
Yeah, sounds great. And I look forward to hearing Dr. Hernandez.
Zoe Rothblatt 01:22
Alright, let’s start as we always do with a listener comment. Ready, Steven?
Steven Newmark 01:26
I’m ready.
Zoe Rothblatt 01:27
This one is from Lisa D. who wrote: “Can’t get enough of this podcast”
Steven Newmark 01:31
Thanks Lisa! Well, we can’t get enough of doing the podcast. So we’re glad to hear that you’re listening.
Zoe Rothblatt 01:36
Good. Thank you so much. Well, Steven, I’m excited for you to hear the interview that I had with Melissa Berry, who’s the founder of Cancer Fashionista. We talked about her breast cancer diagnosis and how that sparked her to become an advocate, specifically in starting Cancer Fashionista to bridge the gap between life saving cancer treatments and fashion, beauty and wellness advice. So I’m really excited for you and our listeners to hear that chat.
Steven Newmark 02:01
Great. I’m excited to listen. But first we have some news updates.
Zoe Rothblatt 02:04
All right, let’s dive in.
Steven Newmark 02:05
Let’s do it. First up is something… probably not a big surprise. There is a shortage of therapists around.
Zoe Rothblatt 02:12
Yeah, so this coincides with the rise of anxiety and depression. We know it’s been on the rise since the start of the pandemic. And obviously that’s getting worse by a shortage of mental health counselors. And you know, this is just always concerning for our community because often chronic illness and mental health go hand in hand and we know that many in our communities still feel really isolated and left behind. So the therapist shortage is definitely impacting people with chronic illness.
Steven Newmark 02:38
Yeah, absolutely. You know, if you’re in this situation, you know, some tips that might help, you should check out any programs that your employer or school, if you’re a student, may offer as part of your benefits. You can ask your provider for recommendations, maybe your specialist like your rheumatologist or gastroenterologist know someone that they can recommend patients to. Also there are a lot of great apps and hotlines out there now.
Zoe Rothblatt 02:59
Yeah, really good tips. And I would say overall, just you know, remember to advocate for yourself and take care of your mental health. Such an important part of self-advocacy is making sure you’re emotionally and mentally well. And you know, I’ll also give another shout-out to our colleagues who host the Wellness Evolution podcast, there’s some really great breathing breaks on there, if you ever need just a moment to breathe.
Steven Newmark 03:20
Yeah. In other news, open enrollment for the Marketplace Health Insurance began on November 1.
Zoe Rothblatt 03:26
Yeah. And you can enroll through mid-January. This is, you know, the open Marketplace Insurance is part of the Affordable Care Act. If you go to healthcare.gov, you should be able to walk through step by step and look at the different plans available.
Steven Newmark 03:38
Right. Premiums are increasing this year, generally, but most folks should not be affected by this higher cost because Congress passed a three year extension of enhanced subsidies as part of the Inflation Reduction Act.
Zoe Rothblatt 03:49
Yeah. Good point, Steven. I remember when we talked about that in a few episodes back about the Inflation Reduction Act and what was in it to help patients and you know, it’s cool to see it coming in reality now as open enrollment season starts. Especially because insurance is so important for our community. You know, there’s definitely things you want to look for: what is your monthly premium? What does your deductible look like? What are the copays on your medication and definitely talk to your doctors see if they’re covered under certain plans.
Steven Newmark 04:18
Right. And of course, you want to make sure that your medications are covered under any plan that you select.
Zoe Rothblatt 04:22
For sure. So you know, our last bit of news is that ACR, the American College of Rheumatology conference is coming soon. You know, I’ll be presenting a patient poster and I know a bunch of people from our team are coming along. I believe you are too Steven?
Steven Newmark 04:36
Yeah. ACR is an annual meeting where rheumatology health professionals from around the world gather and share cutting edge research and best clinical practices.
Zoe Rothblatt 04:45
Yeah, and what’s really exciting is we, at GHLF, have a bunch of research coming out and a lot of patient perspectives like I just mentioned, so you know, follow along on Twitter, and we’ll be sure to keep you guys updated on the latest news coming from this conference and hopefully do a wrap up on our podcasts like we did for EULAR, the European Conference.
Steven Newmark 05:05
Great. Well, I’m excited to hear about your interview.
Zoe Rothblatt 05:08
Yeah. So like I mentioned I spoke with Melissa Berry, founder of Cancer Fashionista about her advocacy. Melissa is a fashion and beauty publicist with a family history of breast cancer. She also hosts the Dear Cancer I’m Beautiful podcast, which is the first of its kind to bridge the gap between life saving cancer treatment and fashion, beauty and wellness advice. Welcome, Melissa to the Health Advocates.
Melissa Berry 05:30
Thank you so much Zoe for having me on the show. I’m so excited to be here.
Zoe Rothblatt 05:34
I’m so excited to have you here and for our listeners to get to know you. So tell us about Cancer Fashionista. Were you always the Cancer Fashionista? What got you started?
Melissa Berry 05:43
Absolutely Zoe. Thank you again. So I always loved fashion. I think I was probably born playing with Barbie dolls. I’ve always enjoyed it. I always had a passion for it. As a teenager loved flipping through magazines. And even in high school, there was a fashion design class that I participated in and loved making the costumes for the high school musicals. And then I decided to go to Marist College where I majored in fashion design and merchandising. And that’s where I really, truly dove into the world of fashion. We have designer critics like Marc Jacobs and Michael Kors and Isaac Mizrahi, who I worked with. So I really had a wonderful time in college exploring my fashionista side. And out of college, I worked as a fashion editor. I worked for a magazine at one point, and I worked for some designers. And then I found my home with public relations. So the kind of fashion and beauty publicist and that was my first career.
Zoe Rothblatt 06:41
And then where does the cancer part come into it? I’m hearing a lot about fashionista. How did you become the Cancer Fashionista?
Melissa Berry 06:48
Absolutely. So I was having a great time with my career. I was married at the time, have two beautiful daughters who are now young ladies now. And you know, I was busy with life. I was juggling career and raising children and all that. And my mom was like, you know, there’s a lot of breast cancer in my family because my mom had breast cancer. Her mother had breast cancer. My grandma’s sister had breast cancer, my grandma’s sister’s daughter had breast cancer. And so when I was about 32, my mom was like: “Look, I know you’re busy. I just think it would be a good idea to get tested for the BRCA gene.” And you know, when you’re the height of your career, you’re raising children, last thing you want to worry about is walking around with the idea that you are probably going to get cancer. But then I decided to kind of look at it from a different angle. I thought, you know what, maybe this could be a roadmap to my health. This could be my GPS to my health. So I kind of assumed that I had the gene because there’s just so much family history, but there was only a 50/50 chance. So I did take the test. And I did test positive for the BRCA gene, which meant that I was very closely monitored for many years. I had a clinical exam where they feel your breasts. I had MRI and mammograms pretty much every six months, and I was under very close watch. I had my BRCA test at 32. I was closely monitored. And then at 42 I just went for a routine mammogram. I was honestly… I was going to a hospital in New York and it was the one time that my oncologist was like Melissa… because I live in New Jersey. He’s like you do not need to go to New York for your mammograms. So I went to a local hospital, which is a wonderful hospital, Englewood hospital, and they… as soon as I went in for my… not even the mammogram, it was the technician who did the clinical. What I didn’t know, Zoe, is that, you know, because I went in there and they were like, well, we need to do a mammogram. And I was like: “Well, you know, I really just had an MRI”. They’re like: “No, no, no, we still need to do this.” So the clinician actually felt a very tiny lump. It didn’t even show up on the mammogram. In the same office visit. The doctor was like, you know, I see something, they did a biopsy, and lo and behold, it was breast cancer. They found it in that very same office visit.
Zoe Rothblatt 09:00
Wow. Yeah, I can’t even imagine, you’re… you’re going through the motions for so long of preventative care. And then all of a sudden, one day you’re faced with this diagnosis, what was going through your head at that time?
Melissa Berry 09:12
Honestly, it was like a very bad dream. And you know, I’ll be honest, you hear about breast cancer, the pink ribbon, all that even as much as it wasn’t my family, you feel like that’s something that someone else gets. It’s not something that you get, and it was very surreal. And I remember when they told me that I had breast cancer, I thought it must be something else. It must be some weird mistake. And then the next day when I went from my consult, I said: “Well, am I going to need chemotherapy?” And they were like: “Yeah,” and I was like: “Is my hair gonna fall out?” They’re like: “Yes,” I mean, the whole thing was just… It happened so quickly. And when I was diagnosed with triple negative breast cancer, and now I’ll be honest, you know, before all this, I didn’t know there were different types of breast cancer. So I thought, well, that sounds triple bad and you know, luckily there’s an incredible support system in place for those with triple negative breast cancer, which I’m so proud to be the board chair of now, which is the Triple Negative Breast Cancer Foundation. And they were incredible, so many great resources, you know: Zoom meetings and chat rooms and all that great stuff that they offer now and thank God for that because it’s a really scary thing to be diagnosed with… with any kind of cancer.
Zoe Rothblatt 10:23
What was the journey like going from feeling that fear in the doctor’s office and you know, not really knowing what your future held to now be sitting on the board of this group and being a voice for Cancer Fashionista and women out there, people out there struggling with cancer and beauty?
Melissa Berry 10:43
You know, it’s also very surreal. So I’ll be honest, if I stop and think about it, I never planned to be a breast cancer advocate. I never planned to have a blog about post mastectomy bras and wigs and lashes. You know, I think sometimes the greatest ideas are born out of pure necessity. And, you know, my background was beauty and fashion PR and when I was first diagnosed, and I knew: Thank God, you know, I was stage one, I was very lucky. No known involvement. It was very early stage and very treatable. And you know, once I knew what my course of treatment was, I thought I don’t even want to look like a supermodel. How do I look like myself going to meetings going to photoshoots and I hit the internet. And I’m like: “All right, where are the wigs, where are the lashes, where are the post mastectomy bras.” And there was nothing in one place. And I thought where is the Vogue of breast cancer because a lot of the products look like something your doctor would have made. Very medicinal. And it was really hard to find these niche brands like Anaono intimates, who I love, to do, you know, products that served a purpose that were functional, but they are also beautiful, where I didn’t have to sacrifice my integrity. So that’s really how Cancer Fashionista was born. It started with a list a list of things that I loved that made me feel beautiful. And then my mom and then my friends would hear if someone that was diagnosed, they’d be like: “Where’s that list,” you know, and then my really good friend Tina, who she was like my arms and legs throughout the whole thing, helping me with getting my kids to school and all that. She has a British accent. She was like: “You want to start a blog” and I’m like: “Tina, I can’t even make dinner. I’m in the middle of chemo. Fine, I’ll do it.” You know, it was like a challenge. And I know it sounds so weird but literally one day I just woke up. And like Cancer Fashionista, it was just like on the tip of my tongue. It’s not like I sat in a board meeting and hired people and decided to start this thing. This was just out of my own need to feel beautiful. And to really maintain my integrity throughout the treatment process and beyond.
Zoe Rothblatt 12:32
That’s amazing. And you know, I can see that your voice for so many, especially talking about that there was nothing out there for you. And now you’ve created this empire, dare I say, where people who are newly diagnosed can now go online and see someone and have products that work for them whereas you didn’t. What was that like when you started noticing people looking to you as an advocate?
Melissa Berry 12:55
Well, thank you for those kind words. And you know, I don’t even look at it as an empire Zoe, I feel like it’s more like a sisterhood. You know, I consider myself you know, it’s like, I never had a big sister. I feel like a big sister will tell you like what to wear on the first date, or like what to say on your interview. And like, you know, friends and family are awesome. But like, we need the big sisters. It’s been like: “Girl all right, the treatment is not that bad. Yes, your hair’s gonna fall out. But this is what you do.” You know, it’s totally a different type of community. But I’m just so grateful, you know, to be able to share the resources and to be able to connect women with each other to support one another. I think it’s so important.
Zoe Rothblatt 13:32
I want to go back to something you mentioned earlier that you know, your mom had had this tough conversation with you about BRCA status in the family and breast cancer history. What advice do you have for people that are looking to have these kinds of conversations about their house with family members?
Melissa Berry 13:49
It could save your life. It’s really that simple. You guys, like take the fear factor out of: “Oh, but I don’t want to know,” listen to the back of our minds, none of us want to know. But if you know that you have a genetic predisposition to something like breast cancer, there’s so many things you can do to prevent it. So why not jump ahead of the curve, cheat the system is how I look at it. And that goes for anything: MS, diabetes, cancer. It’s incredible what they can do with genetic testing these days. So if there is something in your family that’s really predominant, it cannot hurt to ask your primary care physician, you know: “Hey, can I get a panel done? I just want to see if I have a genetic predisposition to something and what can I do to prevent that disease from happening.” We might as well use the science to our advantage? Right?
Zoe Rothblatt 14:32
Exactly. And like you’re mentioning, like such a big part of advocacy is, you know, speaking up at the doctor’s office and asking for those tests, because the doctor may not know about your family history. And if you’re having these conversations in the house, that’s, you know, one part of the advocacy and then bringing it into the doctor’s office and taking care of yourself and the way you did is such a tremendous part of staying healthy, being healthy and taking care of your body.
Melissa Berry 14:57
Thank you for saying that and I couldn’t agree more and you know I’m lucky enough to have conversations with so many incredible other advocates and the one theme that keeps coming up, and I love this, is that your doctor is your consultant. Doctors are not gods. I mean, they’re human beings. So go to them with information and questions and come up with a health plan for you. I think that’s just the golden key right there.
Zoe Rothblatt 15:19
I love that so much, come up with a health plan for you. That’s really what it’s all about. It’s you and your health and your life. And you should have a say in the care. So yeah, I totally agree. Melissa. Lastly, before you go, I wanted to ask you about your podcast, Dear Cancer, I’m Beautiful. Can you tell us about this podcast and where our listeners can find it?
Melissa Berry 15:37
Absolutely. Dear Cancer I’m Beautiful was definitely a COVID idea. It was something that I always wanted to do. But it was a great time to launch it because everyone was kind of stuck at home. But there’s so many of us, so many of my sister thrivers that needed the support, needed the information. So I thought to myself, you know, I’d love to create a library of information. So I talk about everything from postmastectomy lingerie, to clean beauty, to bone health. I have a whole series dedicated to that. So the name of the podcast is Dear Cancer, I’m Beautiful. And then I’ve got a bone health series called Beautiful To The Bone, and it’s been absolutely incredible because I just turned 50 last year, and it was the first time that I ever heard the words DEXA scan. I never knew how important it was to also be really proactive about your bone health. And we could probably have another conversation about bone health and breast cancer. It’s so important. Bone health in general for anybody, men and women alike.
Zoe Rothblatt 16:31
Yeah. Well, we’d love to have you on for that conversation. So I welcome that invite. Thank you, Melissa, so much for joining us today. We are so happy to have had you on. We loved hearing your story and all the amazing advocacy you do.
Melissa Berry 16:43
Thank you so much for having me. And I forgot to mention for Dear Cancer I’m Beautiful. You can check it out on Spotify. And then if you want to follow me, I do most of my fun on Instagram. And that’s at Cancer Fashionista. But I’m also on Facebook and Twitter.
Zoe Rothblatt 16:56
Awesome. Thank you.
Melissa Berry 16:57
Thank you guys. And thank you for everything that you do. It’s really such a pleasure to be working with you and having these conversations here.
Zoe Rothblatt 17:03
Thank you so much.
Steven Newmark 17:04
Wow. Well, that was great. So fascinating to hear from Melissa.
Zoe Rothblatt 17:09
Well, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 17:12
Well, I learned from Melissa that advocacy comes from all different corners and from folks with all different backgrounds. So it’s interesting to have someone from the fashion world who is also an advocate for patients.
Zoe Rothblatt 17:22
And I learned from Melissa the importance of knowing your family history and having these tough conversations with your loved ones.
Steven Newmark 17:29
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to thehealthadvocat[email protected]. Or better yet, include a short video or audio clip.
Zoe Rothblatt 17:42
And who knows, whatever you share maybe included in our listener feedback portion of future episodes.
Steven Newmark 17:47
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 17:52
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 18:11
I’m Steven Newmark. We’ll see you next time.
Narrator 18:16
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 6- Copay Accumulators Explained: Why Advocacy Matters
The impact of copay accumulator policies can create additional financial difficulties for patients by limiting payments that count toward their annual deductibles and out-of-pocket maximums. As a result, millions of patients who are already struggling with the financial and physical toll of their condition may delay care or stop taking their medication altogether leading to worsening health.
“Copay accumulator adjusters are a program used by insurance companies to force patients to take medications that they determine are cheaper for them. And, in reality, it’s actually just cheaper for the insurance company,” says Corey Greenblatt, Senior Manager of Policy and Advocacy at GHLF.
Our guests, JP Summers, Patient Advocate and Community Outreach Manager at GHLF, and Corey, tell us more about their advocacy efforts and about their support for the bipartisan bill called the HELP Copays Act.
Copay Accumulators Explained: Why Advocacy Matters
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Corey Greenblatt 00:08
Copay accumulator adjusters are a program used by insurance companies to force patients to take medications that they determine are cheaper for them. And in reality, it’s actually just cheaper for the insurance company.
Steven Newmark 00:23
Welcome to The Health Advocates a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:32
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:37
Our goal is to help you understand what’s happening in the health care 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
We sure do and as a reminder, you can check all of our podcasts out at ghlf.org/listen. This week will give a shout-out to our colleagues, Conner and Robert. They recently dropped an episode on the 340B program explaining it; who it serves and what’s happening now. So it’s a great breakdown of policy. So check out Healthcare Matters.
Steven Newmark 01:11
Yeah, 340B, it can be a complicated topic, and in particular, whether it’s serving the needs of patients or serving others. So it’s an interesting discussion. I actually already listened to it and I highly encourage others to do the same.
Zoe Rothblatt 01:24
Excellent. Well, let’s start with the listener comment. Are you ready, Steven?
Steven Newmark 01:27
I am ready.
Zoe Rothblatt 01:28
This one is from Casey V who wrote great podcast I enjoy tuning in weekly.
Steven Newmark 01:33
Well, thanks, Casey. We enjoy doing what we do weekly as well. And we’re glad to hear that you’re listening.
Zoe Rothblatt 01:38
Thank you so much.
Steven Newmark 01:40
Well, this week, we have special guests here with us, our colleagues, Corey Greenblatt and JP Summers. They are here today to talk to us about their recent advocacy to help patients use copay assistance. Stay tuned for that discussion. But first, we have some news updates.
Zoe Rothblatt 01:53
All right, let’s dive in.
Steven Newmark 01:55
Absolutely. We’ll start in Massachusetts, where legislation was passed by both the Massachusetts House and Senate after being first introduced over five years ago. This is a step therapy protection law. And it’s one of the strongest step therapy laws passed in the country. And I have to note, because he’s going to be on our program in a little bit, that Corey Greenblat has been working on this for almost the entirety of his tenure here at GHLF. So congratulations to Corey. That’s a real great example that policy moves slowly, but it does move.
Zoe Rothblatt 02:23
100% and big congrats to Corey and all the advocates that have been arguing and fighting over the years to say: “No, we need protections, we should get the medication at the right time that our doctor prescribes.” So I’m hoping that this passes. I think that Governor Baker has 10 days to sign this bill, otherwise, it’ll die and it’d be repassed next year. And you know, I’m hoping that we can see the governor sign this quickly.
Steven Newmark 02:46
Absolutely. Hopefully, we’ll have an update on that within 10 days.
Zoe Rothblatt 02:50
Okay. Well, Steven, I know you love these, we have results from our latest COVID-19 Patient Support Program quick poll.
Steven Newmark 02:56
All right, let’s hear it.
Zoe Rothblatt 02:57
So we asked about holiday plans and COVID concerns which we’ve asked about the past few years. So it’s interesting to get that year over year data. And what we found was that most 83% don’t plan on traveling and if they do, it’s just to a different state overall, most are celebrating in person with their usual friends or family or with just their household. And it seems like most are celebrating like they did before the pandemic with only 5% canceling plans or celebrating virtually. Steven does that ring true for you in conversations that you’re hearing?
Steven Newmark 03:30
Yeah, for sure. I mean, I would still heavily encourage folks to do some of the things that we all know what to do when it comes to being safe around the holidays. Testing right before having everyone who’s visiting a location. Test right before. Our loved ones should feel comfortable enough taking a test, you know, so that we can all feel safe and be safe. I would also encourage a little bit of social distancing, if you will, or almost like a mini isolation period. But before, to the extent you’re able to do that, I know it’s not always easy, but anything you can do to help minimize contact. And of course, encourage friends and family to be even more aggressive than they perhaps normally would be with the mask wearing, in the days, and I would go so far as to say a minimum of a week before, if not 10 days before the holidays.
Zoe Rothblatt 04:14
Yeah. Oh, good tips. And don’t forget to get your flu shot and your COVID Booster. The bivalent booster.
Steven Newmark 04:20
Definitely be ready.
Zoe Rothblatt 04:21
Yeah, the last piece of this was just from the free response section. So many people wrote in that they’re a bit nervous but feeling hopeful and looking forward to the celebrations and that just made me feel hopeful that our community is feeling like they can participate in this holiday season in one way or another and it’s been a really hard few years. So I’m hoping for the best for us.
Steven Newmark 04:44
Absolutely. There are a lot of mental health benefits which translate into physical health benefits, as we know, for getting together with one’s family. Well, most of the time, some folks maybe not but hopefully there are mental health benefits to see our loved ones And we hope you get the opportunity to do that. So like we mentioned, we have with us today Corey Greenblatt and JP summers. Welcome!
Zoe Rothblatt 05:06
Welcome to The Health Advocates, Corey and JP. Would you like to introduce yourselves to our listeners?
JP Summers 05:12
Sure. My name is JP summers. I’m a Patient Advocate, Community Outreach Manager at the Global Healthy Living Foundation. I’m also someone living with several chronic illnesses.
Corey Greenblatt 05:21
And hi everyone, I’m Corey Greenblatt. I’ve been here a couple times, happy to be back. Senior Manager of Policy and Advocacy with the Global Healthy Living Foundation. I am also a type one diabetic patient. So all of this definitely strikes home to me, in addition to being what I work on every day.
Steven Newmark 05:35
Great. Let me start with you, JP, why don’t you just tell us about the recent virtual advocacy day that you guys participated in.
JP Summers 05:42
Sure, Steven. So last week, Corey and I were able to participate with the virtual advocacy, which was the All Copays Count Coalition Hill Day. And that was my first time doing a virtual event for this particular issue. And I had a wonderful group of people from different organizations that participated. And each person played a significant role in speaking with the senator’s office. And it was just overall a great experience as something that I was proud and honored to be a part of, but also as someone living with several chronic illnesses, it really was something I needed to voice my opinion on because I as well had been through that process, not once, not twice, but several times, for myself, but also with my son who also was diagnosed with chronic migraine. So again, it was a personal matter for me, but also being a part of GHLF, it was something that again, I felt the need to do and voice my opinion to raise awareness.
Zoe Rothblatt 06:44
Thank you so much, JP. Before we dive in further to your experience, Corey, this day was focused on copay accumulators. Can you brief us on what those are?
Corey Greenblatt 06:54
Sure, so copay accumulator adjusters… I’ll start with kind of what they are and then a little analogy about them. So copay accumulator adjusters are a program used by insurance companies to force patients to take medications that they determine are cheaper for them. And in reality, it’s actually just cheaper for the insurance company. The way that this works in practice and the anecdote that I always go back to, is something I learned when I was first learning about this. And I refer to it as the drive thru example. And it’s essentially that imagine you’re at a drive thru and you feel generous, you decide to pay for the person behind you, that person goes up to the register and then the person at the register says: “Hey, the person who just was here decided to pay for you. But because you didn’t pay for yourself, we’re going to make you pay because we believe that you need to have some skin in the game.” And that’s essentially what a copay accumulator adjuster does. It says that even though you as the patient have paid using a copay assistance program, and we as the insurance company have accepted that money, we are still going to force you to pay a second time because we believe that you should pay your own medical costs and someone else shouldn’t pay it for you. That’s essentially what a copay accumulator adjuster does. And in reality, there are a lot of reasons this is not a nicer good program. But one of the main ones is that the key argument that insurance companies use for these is that they are forcing… or pushing patients away from expensive brand medications to cheaper alternatives. The problem with that logic is that 99% of the medications that have copay assistance programs do not have a generic equivalent. So it is not just taking a patient from a expensive brand to a cheaper generic. It is actually just taking them from an expensive brand to a brand medication that the insurance company would prefer.
Steven Newmark 08:42
Yeah, and Corey, can you explain the legislation that you and JP were advocating?
Corey Greenblatt 08:46
Sure, so it’s called the HELP Copays Act and essentially what this bill would do is… it’s very simple, it says that any payment being made on behalf of a patient, whether it comes from the patient, a manufacturer’s assistance program, a religious organization, a charitable organization, or a family member who’s being generous, all of those payment methods would be forced to count toward the patient’s out-of-pocket maximum and deductible spending so that they’d be able to reach those thresholds and those benchmarks much quicker than they’d be able to reach them otherwise.
Zoe Rothblatt 09:19
And JP you mentioned, you’ve had experience and trouble with using copay assistance. What would a bill like this mean to you if passed?
JP Summers 09:27
Well, on a personal level, when I first started going through my chronic illness journey, I was on different medications, and I did not realize what was happening until I would go to get my prescriptions filled and all of a sudden, you know, I’m looking at what I just paid before… previously and what I’m paying now and couldn’t understand why has, you know, the amount not changed. But also each medication I was prescribed… again, I was going through different kinds because when you’re chronically ill it’s a process, you don’t know what treatment regimen is going to work best for you, especially when you have other conditions because what people also don’t know is that when you have one diagnosis, another medication can actually make it worse. So it was a process. And it really was several years that I was dealing with this. And six months after I was diagnosed with my first chronic illness, which was chronic migraine, my son was diagnosed with chronic abdominal migraine and it was just a repeat process with him. And again to go through that and when you go from a household that has two incomes to one, because I was so ill that I could not work, that is something that affects you on a financial level, but as well as emotional because now you’re in a situation where you’re having to relook at your finances. And that’s not something you should have to do when you’re trying to focus on how do you get better, you know. I didn’t work, so how was I going to, you know, focus on my health when I was worried about the financial strain it was putting on my family.
Steven Newmark 11:04
Corey, what is it like working with the All Copays Count Coalition?
Corey Greenblatt 11:07
It’s really great. One of the best things about the All Copays Count Coalition is the diversity in patient groups and provider groups that are represented in the coalition. We have patients represented from DERM communities, rheumatic communities, migraine communities, HIV, AIDS communities, hepatitis, all of these patient groups came together to represent this issue. And it’s something that it flows through the coalition where we have lots of voices and lots of patients represented.
Zoe Rothblatt 11:35
Corey, so from what I understand this was a federal virtual advocacy day. Do states have bills like this? What’s going on amongst the states?
Corey Greenblatt 11:44
Yeah, states do have bills like this. There’s around 15 to 20 states, I believe at this point, maybe a little less that have passed the legislation regarding copay accumulator adjusters. However, similar to the issues we have with step therapy laws, these laws at the state level only really impact a small subset of the state population. So we really need federal legislation to come in and impact a large group of patients across the entire country with the flip of a switch.
Steven Newmark 12:14
Great. And JP, can you tell us how other patients like yourself can get involved?
JP Summers 12:18
So we have the 50 State Network, and it gives you an opportunity to voice your opinion, you know, whether it’s medical condition, the state you live in, anything that is pressing, a pressing issue, that’s, you know, you want to share your story. That’s the way to get involved. But also, you know, just share with others. And when you look at going through the process I did, I didn’t know that was the copay accumulator practice, I had no idea. So again, just sharing your story, because others will then speak up about it. So there’s definitely a lot to be done. But as Corey mentioned, there are several states already that implemented it. But again, we still have a way to go.
Zoe Rothblatt 12:59
Well, last question for you, both Corey and JP, what’s it like when you get into those meetings, and you’re having a conversation with elected officials? What’s… you know, going through your mind, what are you feeling?
Corey Greenblatt 13:09
I love it. I always love those meetings. They’re exciting to me, because in those meetings, as patients, we are the experts, we’re the ones who are telling how the lives we are experiencing, and that our community is experiencing, and it is the legislative officials job to listen, and it is a powerful position to go in knowing that going into that meeting, and having that point of view, and that’s a point of view that at GHLF and at the 50 State Network we try to instill in all the patients we work with.
Zoe Rothblatt 13:41
And JP, what’s it like for you?
JP Summers 13:43
I actually feel the same way as Corey, you know, it’s something that I feel like I get a piece of my former life back each time I share my story, each time I get to advocate along with other patients. I feel like I’m a part of an amazing community, and that you have that support, and it’s something that I just love doing. I could not imagine not doing it. And every time I am able to do it virtually or in person, again, it feels like there’s a piece of me that comes back that I lost years ago when I got my first diagnosis. And again, I just… I love it. I really do.
Zoe Rothblatt 14:20
Well, thank you both so much.
Steven Newmark 14:22
Yeah, thank you both. Before we let you go, I just had to mention to Corey, a big congratulations. I mentioned at the top before you joined us about the Massachusetts legislation on step therapy reform, and I know the work that you’ve done, I think I mentioned, almost the entirety of your career here at GHLF and so that’s fantastic. And it also just shows how long it takes to actually pass a piece of legislation. It’s not like the movies. You know, Mr. Smith Goes to Washington, you just go down and you argue for something and within a few months, it’s done. It takes years. You’ve been doing it for years and congratulations!
Corey Greenblatt 14:54
Thank you very much. I agree. I always say that legislation and legislative calendars tend to move at a snail’s pace when they’re running very fast. So it definitely can be a long payoff on things. But this is something that we’ve worked hard for. Not done yet! Still need to get the governor to sign it and we have a couple days to get that to happen. So anyone living in Boston who’s listening to this, give Governor Baker a call and see if he has signed the bill or not, and try and convince him that it’s an important thing to do. But definitely a good feeling to get this far!
Steven Newmark 15:25
Excellent. Well, thank you both.
Zoe Rothblatt 15:27
Yeah. Thank you both so much for joining us today.
JP Summers 15:30
Yes, thank you, Zoe, and Steven, for having me on today.
Corey Greenblatt 15:33
Yeah. Thanks you two for having us back on again. This was awesome.
Zoe Rothblatt 15:38
All right, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 15:42
Well, I learned from JP and Corey the value of advocacy. You know, we say it all the time, but there’s no replacement for actually going directly to policymakers and speaking up on behalf of yourself and others similarly situated.
Zoe Rothblatt 15:57
Agreed, I have a similar learning and just about you know, the power of advocacy and the patient voice, and something that stuck out to me was when JP said that she gets years back on her life every time she advocates and really turning that pain into purpose and helping others out there.
Steven Newmark 16:14
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to thehealthadvoca[email protected] or better yet, include a short video or audio clip.
Zoe Rothblatt 16:24
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:30
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 16:35
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 hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 16:53
I’m Steven Newmark. We’ll see you next time.
Narrator 16:59
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
S5, Ep 5- COVID-19: Vaccine Skepticism: A Worrisome Trend Beyond COVID-19
COVID-19 vaccines have been effective in saving lives but as winter approaches and yet another coronavirus surge is expected, public health leaders face growing skepticism and apathy toward the vaccines. Worse yet, it seems that the politicized backlash against COVID-19 vaccinations is fostering skepticism about routine vaccinations — in general — from childhood immunizations to flu shots.
More than 80 anti-vaccine bills have been introduced in state legislatures. While vaccine skepticism remains a minority position in the U.S., the general consensus on vaccine importance and value is not quite as strong as it once was.
Vaccine Skepticism: A Worrisome Trend Beyond COVID-19
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
Anti-vaccine sentiment is higher now than it was even before the pandemic began. There’s some irony in that. We dealt with a global pandemic, and it was vaccines and scientific development generally that are helping get us out of this pandemic and moving into a safer phase. And yet vaccine skepticism is higher than it’s ever been.
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 00:39
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:43
Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:56
We sure do. And as a reminder to our listeners, you can check them all out at ghlf.org/listen. If I can brag for a moment for myself, check out my other podcast ‘Breaking Down Biosimilars’.
Steven Newmark 01:10
Yes
Zoe Rothblatt 01:10
We published new episodes, which feature just a really candid two-part conversation between patient advocates Lena Andersen and Cristina Montoya on their experience with both biologics and biosimilars. So definitely check that out.
Steven Newmark 01:23
I will. Great show! It’s my second favorite show.
Zoe Rothblatt 01:27
Awesome. Well, let’s start with a listener comment. Are you ready, Steven?
Steven Newmark 01:30
I am ready.
Zoe Rothblatt 01:31
This one came from Gabe T, who wrote: “Great episode on advocating for health care issues.”
Steven Newmark 01:37
Thank you, Gabe, and great on you for advocating yourself. If you’re listening to us, you’re advocating, that in and of itself is being part of the team, and hopefully we’ll see you in Washington or other state capitals.
Zoe Rothblatt 01:47
Yeah, thanks for advocating with us listeners. So today, we’ll discuss the lagging COVID booster vaccine rates, and just overall the growing concern over vaccine skepticism. But first, as we always do, we have some news updates.
Steven Newmark 02:02
The first piece of news is: it looks like we may get an early start to flu season. The CDC released his first fall FluView report for this season. And while flu activity is overall low, there are increases in certain parts of the country, specifically the Southeast and South Central regions.
Zoe Rothblatt 02:17
You know, this is similar to what we saw in Australia, the southern hemisphere gets their flu season before us. And they also had an earlier start to the flu season. And it was the H3N2 virus, which is the same as here. So ultimately, I guess it’s good. That’s following a pattern that we’ve seen earlier this year.
Steven Newmark 02:35
So bottom line, if you’re listening to this, no matter what time of year, what time of day, whenever you’re listening to this, you should be getting vaccinated.
Zoe Rothblatt 02:42
True. And yeah, this is a good point because some people have questions about when to get the flu vaccine. So it lasts for the whole season. Right? And it’s really important if we see that flu is starting early, you want to make sure to get it now and don’t wait.
Steven Newmark 02:54
Definitely! I’m one of those people. I was waiting until November. I told my parents to wait until November and when I saw the news, I immediately called my parents and I said don’t wait, go get it right now. And they did.
Zoe Rothblatt 03:04
Good advocacy Steven!
Steven Newmark 03:06
There you go. What else is news?
Zoe Rothblatt 03:08
So the U.S. authorized COVID boosters for children as young as five which is really exciting. This is both for the Moderna and the Pfizer shots so we have 2 bivalent boosters available for children now.
Steven Newmark 03:20
Yeah, the pediatric doses are being shipped out to pharmacies as we record and hopefully should be available soon if not by the time you listen to this.
Zoe Rothblatt 03:28
Steven, next up in our piece of news as that October 20th marks World Osteoporosis Day and I just want to bring this up because it’s a good time to advocate for yourself and be proactive about your health and your family’s health. So bring up bone health with your doctor and if you’re wondering about osteoporosis, here are some fast facts. So the first one; osteoporosis is a condition in which bones become weak and brittle.
Steven Newmark 03:55
That one I knew.
Zoe Rothblatt 03:56
Then, you know, if you’re wondering how common it is one in three women over the age of 50 will suffer from broken bone due to osteoporosis.
Steven Newmark 04:04
Wow, that one I did not know.
Zoe Rothblatt 04:05
Number three; staying active can help build and maintain strong bones which reduces the risk of developing osteoporosis.
Steven Newmark 04:12
That one I knew.
Zoe Rothblatt 04:13
And number four; the DEXA scan is an imaging test that measures bone density and these scan results can help provide details about your risk for osteoporosis and fractures.
Steven Newmark 04:24
That one I knew and that one is a very important point. Definitely talk to your doctor about getting a DEXA scan and how often you should get a new scan as a can help identify osteoporosis early, which is important.
Zoe Rothblatt 04:35
Yeah, definitely. You know, so much of advocating is just learning the information and taking it and bringing it up with your doctor. So you know we share these facts and hope that it enhances your shared decision making.
Steven Newmark 04:46
Definitely. Moving on to our main topic for today. We want to talk about how anti-vaccine sentiment is higher now than it was even before the pandemic began. There’s some irony in that. We dealt with a global pandemic, and it was vaccines and scientific development generally that are helping get us out of this pandemic and moving into a safer phase. And yet vaccine skepticism is higher than it’s ever been.
Zoe Rothblatt 05:10
Yeah. How did we get here? You know, let’s talk about that.
Steven Newmark 05:14
Right?
Zoe Rothblatt 05:14
What is going on that we got to this phase? And how can we help get out of it? Maybe if we can talk about that, too?
Steven Newmark 05:21
Yeah, that’s a good question. We fear that it’s become so politicized. That’s the first thing. There’s a political bent that we see in political society, both extreme on the left and extreme on the right, who tend to have a skepticism about vaccines, generally, sometimes about medicine in the medical world, even just general therapeutics and other products that those of us who are chronically ill rely upon. And again, on the political spectrum you see this from both on the extreme far left and the extreme far right.
Zoe Rothblatt 05:50
And, you know, for years, I guess we’ve been fighting this vaccine issue. It’s not a new one, per se.
Steven Newmark 05:56
Yeah
Zoe Rothblatt 05:56
You know, we’ve been advocating for school vaccinations mandatory, you know, to have people get their vaccines because it protects our community who lives with chronic illness who may not be able to get certain vaccines or may have a diminished response. So that community immunity known as herd immunity is really important. We’ve been fighting it for years, but it felt like so many people were on our side, you know, pro vaccine, and it was a small but loud group we were fighting against, and now it feels like that group is getting louder and louder.
Steven Newmark 06:27
Yeah, just to put it in a political lens. There are ton of anti-vaccine mandate bills that are on state legislative dockets this year. Specifically, there are more than 80 anti-vaccine bills that have been introduced, which…
Zoe Rothblatt 06:38
Wait, pause. 80 over this country, we have 50 states. So that’s a lot, right?
Steven Newmark 06:45
That is, that is a lot. And when I say anti-vaccine bills, I’m talking about bills that are getting rid of vaccine mandates for children, like you mentioned. That’s the bulk of where these bills are coming from. But of course in public health, we know how important it is. I mean, we’ve essentially eradicated, or at least up until a few months ago, had eradicated polio from the United States. We’ve essentially eradicated measles mumps rubella, because of vaccines. Yet, our failure to continue with these regular immunization schedules could easily lead to these diseases making a comeback.
Zoe Rothblatt 07:15
And by the way, childhood vaccination rates just fell generally during COVID, just by the nature of being either in quarantine, or just people not really going into a medical facility because they didn’t want to risk getting sick. So I was looking at some of the numbers, childhood vaccination rates fell during the 2020 to 2021 school year and the equivalent of 35,000 kids not being up to date on their shots.
Steven Newmark 07:41
Yeah, I mean, that’s, that’s really scary to say the least. And I think like you said, some of it had to do with folks just physically not being present at doctors offices, and failing to miss the shots. And then once you miss one year, you start to say: “Well, I skipped last year, is it really that important?” and so on, and so forth. It’s why even folks like us continue to sound the alarm we talked about it earlier about getting flu shots.
Zoe Rothblatt 08:03
And it’s not just kids, adults play a role in this too. Fewer Americans said this year than last year that they’ll get their flu shot compared to the few years before. And this is different, of course, then the poll that we conducted in our community, our COVID-19 Patient Support Program, which found an overwhelming majority is getting their flu shot and plans to and talk to their doctor about it. But it’s interesting to put it in the context of general Americans saying, you know, we’re not going to get it.
Steven Newmark 08:31
Yeah, well, that’s not surprising, because as we know, we’re dealing with a lot of folks who have chronic conditions. And the imperative, I think, is higher, of course, for us to get our vaccines. But the scary thing is that when the general public doesn’t follow through and get their vaccines, the chance for community spread of the flu and other diseases is that much greater, which has a deleterious effect on us.
Zoe Rothblatt 08:51
So why don’t people trust and get the vaccines? What is going on? Do we have any answers or ways to combat that?
Steven Newmark 09:00
I don’t know the answer to that question. I don’t understand it. I don’t see many people who get on an airplane and think that they could fly a plane better than the pilots who are experts in flying. So I don’t understand where this lack of trust where scientists come from, and it’s not even a scientific thing. You know, we trust scientists to take us to the moon, right? So I don’t understand.
Zoe Rothblatt 09:19
Exactly. And by the way, you know, things that I’ve been hearing here haven’t been necessarily anti vaccine, but I think there’s a lot of confusion. People don’t know if they should be getting this updated booster, if they qualify for it. People haven’t really heard about it. And there just needs to be a larger campaign in general to say like this bivalent booster was approved or authorized for emergency use authorization. It’s recommended for basically everyone to get it at this point unless you recently had a shot or had COVID. And we just need more awareness on that because I’ve had a lot of family coming to me saying: “What’s the deal? What do I do” and they just don’t know. So there’s also that aspect to this.
Steven Newmark 10:01
Yeah, I think part of it perhaps is that a lot of the information that comes out in terms of vaccines, and particularly the COVID vaccines comes from the government. And there is such a culture that has developed over the last three decades of distrust in government generally. And there is almost this entire economy that thrives on bad mouthing government. There’s an entire ecosystem of podcasts, not our podcasts, but radio and other audio formats. There’s the media that thrive on constantly bashing anything that comes from government sources, including neutral government sources like the CDC. So when you’re hearing such invective coming on one side, it’s very difficult to combat and it feels as though the CDC and policymakers from the Biden administration on down have almost collectively decided not to engage fully with respect to the bivalent booster. It’s almost as if they put the information out, and they sort of hope it gets out. And if I may, I know I’m speaking a lot. I think it’s more important than ever, that we have advocates like us speak out. Folks who are trusted voices who have nothing to gain other than our own safety. We want us to be safe, we want our loved ones to be safe. And that’s where we come in. I think we need more folks like us talking about what you just said about the safety and efficacy of these vaccines.
Zoe Rothblatt 11:22
That’s it. At the end of the day, I saw some data that showed if 80% of eligible Americans got latest COVID boosters, as many as 90,000 lives could be saved. That’s incredible. That’s someone’s mom, someone’s brother, someone’s partner, it’s a loved one, you know, it’s a life.
Steven Newmark 11:40
Look, it’s easy to get caught up on Facebook and social media, they thrive on the quick hits. And seeing something that promotes skepticism is something that, unfortunately, we probably all know somebody who will go down these rabbit holes, but it’s incumbent upon us on a very personal level to talk to our families, friends, to be a little bit more vocal about the vaccines and be positive and explain how important it is to saving our lives and teaching folks almost on an individual level. Beyond that it’s incumbent upon us to teach policymakers and to combat some of this misinformation that is out there.
Zoe Rothblatt 12:15
And I think that a really good place to start is just by talking about why you get the vaccine and why it helps you sometimes these conversations can get heightened quickly. And I usually start by talking about what it does for my safety and my health and how that is important to me and those around me.
Steven Newmark 12:35
Excellent. All right. Well, this is great. So everyone listening has an important task in addition to getting the vaccine. Talk to everyone you know about the safety and efficacy of vaccines generally.
Zoe Rothblatt 12:44
Amen. Let’s do that. Let’s all commit to talking to at least one person about it. Well, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 12:54
Well, I learned in honor of World Osteoporosis Day that one in three women over the age of 50 will suffer from a broken bone due to osteoporosis.
Zoe Rothblatt 13:03
And I learned from you you know, you’ve been in the vaccine space for longer than I have and it was just important to hear from you about what’s happened over time and how this vaccine skepticism has grown and diminished.
Steven Newmark 13:17
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to The Health Advocates at GHLF.org. Or better yet, include a short video or audio clip
Zoe Rothblatt 13:28
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 13:33
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 13:38
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 13:57
I’m Steven Newmark. We’ll see you next time.
Narrator 14:02
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 4- COVID-19: As the Virus Wanes, Many Questions Remain
Nearly three years into the COVID-19 pandemic, the rollout of vaccines and therapies has reduced infections and hospitalizations across the globe, yet no one knows with certainty what’s just beyond the horizon. “Scientists believe that [COVID-19] will continue evolving to become better at escaping the human immune system, but researchers are uncertain about what future variants might look like,” says Steven Newmark, Director of Policy at GHLF.
Will there be new variants? Can we develop a vaccine that will protect against future variants? Why do some patients develop long COVID? In this episode, we address these questions and more.
COVID-19: As the Virus Wanes, Many Questions Remain
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
We know that immunocompromised people play a role in new variants, and this is because unfortunately, the immunocompromised body is like a good breeding ground for these variants. But we also don’t know the extent to which that occurs. Will the virus keep evolving? Will there be new variants? And how do immunocompromised people play a role in this?
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 00:39
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the health care 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 00:57
We sure do and as a reminder, you can check all of our podcasts out at ghlf.org/listen. Check out our latest podcast Beacons for Better Health. On this podcast, you’ll hear from this year’s recipients of the first annual GHLF Beacons for Better Health Awards. And they’ll talk all about how they’re impacting patients lives worldwide.
Steven Newmark 01:20
Yes, I’m very excited for this show. It’s gonna be incredible to hear from these folks who really give an extraordinary amount for themselves and for patients.
Zoe Rothblatt 01:29
100%! I’m so excited too. Let’s start with a listener comment. Are you ready, Steven?
Steven Newmark 01:34
I am ready.
Zoe Rothblatt 01:35
This one came from Jane L. who wrote: “Love listening to this podcast on my way to work.”
Steven Newmark 01:40
Thank you, Jane. I love listening to podcasts on my way to work as well. And I’m glad that you’ve chosen ours on your commute.
Zoe Rothblatt 01:46
Yeah, thank you so much, Jane.
Steven Newmark 01:49
Well, today we’re going to talk about what we still don’t know about COVID. We’ve talked a bunch about what safety measures are being dropped, vaccine updates, and what is happening now. But there’s still a lot we have yet to learn.
Zoe Rothblatt 01:58
And first, we do have a few news updates. The first thing I want to share with our listeners is that I got my COVID booster shot. That’s the new bivalent shot that helps protect against Omicron.
Steven Newmark 02:09
Excellent, excellent, great work Zoe! I’m going to call you Ms. Bivalent from now on.
Zoe Rothblatt 02:14
I’ll take it!
Steven Newmark 02:14
How did it feel?
Zoe Rothblatt 02:15
Now I’m feeling like really relieved it’s done with and I’m going into this season with protection. I talked to my doctor about what’s best with timing, I was a bit nervous for the shot. And you know, we decided to do it within a few days of my flu shot so I only skipped my meds once. I’ll say the side effects were pretty mild for me, just tired and headachy, overall okay. You know, there was two things that stood out to me when I went to get my shot. All my other shots have been in the New York, New Jersey area, this was my first one in Tennessee. And it did feel a little different. The pharmacist was not wearing a mask, which made me a little nervous as I’m going in to get protection. I also did feel like it was a little risky of a situation. And I’ve heard from people in our community that they feel the same. So that was just something that was a bit different for me.
Steven Newmark 03:04
Yeah, you know, we’ve spoken about this before, about the masks coming off, and one of the places if nothing else, you would like to see masks continue are health settings, health care settings, and I consider pharmacies to certainly be health care settings. But the fact that the actual pharmacist who was administering the shot was not wearing a mask, that’s concerning. I’m beaten down.
Zoe Rothblatt 03:22
Well, I was in my mask, so I at least felt like I have some level of protection. And then the other thing, this was just more logistical, is that because I’m immunocompromised, I’ve got a bunch of shots. I had the three for the primary series then the booster, which is technically the fourth shot. And now this COVID Omicron booster was the fifth shot. There’s no room on my COVID card. She was like squeezing it in at the bottom and I’m just wondering what people in our community are supposed to do, like, do we get new cards? There’s not really any more room?
Steven Newmark 03:54
Yeah, I think what you’re supposed to do is, you’re supposed to get a second card. It’s how it’s technically supposed to work. I guess a few things. The first is it doesn’t really matter, the cards were there because at the beginning of the pandemic, there was this idea that the card itself would allow you to get into certain venues. I don’t know of any place on Earth that still uses that, number one. Number two, the few that do, to the extent that vaccines are still mandated in places, there are other ways of getting it that are almost easier if you will. And number three, I don’t know of any place that requires you to have five vaccines. So I guess from that vantage point, you’re okay. A few other things, you know, your record is still available electronically. And I know it can be daunting, but if you can get your electronic medical record, particularly what I always do, and I would encourage others to do this is I use my primary care doctor as the recipient of all of my medical records. No matter who I’m going to see I send everything to my primary care doctor so that I have one place that I can go to to get everything I need. And my primary care doctor has made it so easy on their portal, there’s actually a button that says ‘click here for your COVID records’ and you could print it out and it comes with a QR code and everything. So you know, if you ever needed something, I find that to be just by far the easiest way to prove your vaccination status. So I would encourage you and others similarly situated, regardless of whether you had no room on the COVID card, to try and get the information in electronic form.
Zoe Rothblatt 05:16
Okay, you just let us perfectly in our next bit of news, which is all about health records and digital access. So you know, a new federal rule under the 21st Century Cures Act says that health care organizations must give patients unfettered access to their full health records in digital format.
Steven Newmark 05:35
Yeah, the goal is to help patients get their data, and it’s up to the patient. It’s their data, and they can choose who to share it with and how to share it.
Zoe Rothblatt 05:42
When I first saw this, I kind of thought, don’t we have HIPAA? And doesn’t that allow for, you know, patients to ask for their records and turn it over? And as I thought about it more, I thought about, you know, when I’ve tried to get my records, there’s a lot of delays, sometimes they say, we’ll send it if you have a fax machine, I don’t have one of those. And I’m thinking like, you know, sometimes they’ll offer to send it to another provider. And I’m like, why can’t you send it to me? It’s all about me.
Steven Newmark 06:09
Yeah, absolutely. Because of HIPAA, actually, it had been a little difficult to send records electronically and hopefully, the 21st Century Cures Act will make it a simpler process to do so. Because clearly for getting hundreds or dozens of pages, you know, it’s simpler to get it electronically, rather than to try and obtain it, you know, either a hardcopy or sometimes as you said, they only do it by fax. I’ve also had providers my own personal experience, who will do it but they’ll charge you printing fees.
Zoe Rothblatt 06:34
That’s not cool. We already pay the copays, the coinsurance, deductibles, we don’t need to pay paper fees.
Steven Newmark 06:41
I know, I don’t even want it in a hardcopy Give it to me electronically. Well, and hopefully patient’s ability to get their data means that they can better understand their care, shop for services and, you know, participate in research without waiting for a clinician or a drug company to present them with an opportunity.
Zoe Rothblatt 06:55
Yeah, you know, for chronic disease, you often see a lot of specialists over the years. So it really does matter to have this access, even like you were just talking about with your primary care, the person that holds all your data, it’s really helpful to be able to, you know, move the different things from different specialists over to the right people at the right time.
Steven Newmark 07:12
Yeah, in additional news, many patients, unfortunately, are still unable to afford health care costs. There was a recent Commonwealth Fund survey, which was conducted this year between March 28 and July 4, that found that 43% of working-age adults were inadequately insured.
Zoe Rothblatt 07:29
Wow. 43%. But you know, what does that mean? They were inadequately insured?
Steven Newmark 07:34
Well, it means that they were either uninsured, which accounted for 9%. Or they had a gap in their coverage over the previous year, which was 11%, or they were insured all year, but were quote unquote, ‘underinsured’, which the Commonwealth Fund defines as having coverage that still doesn’t provide affordable access to health care. And that accounted for 23% of cases.
Zoe Rothblatt 07:54
You know, I believe it, it’s a lot to pay for your health. And when you have a chronic disease, and you’re faced, let’s say, with this underinsured scenario where you just simply can’t afford to pay the monthly bills for prescriptions, or you have an extra coming up, you haven’t met your deductible, it’s a huge copay. Things like that. It means that, you know, people are going to avoid getting the care they need, not fill their prescriptions on time and that can ultimately lead to long term health consequences, and also financial ones as well. It’s expensive to be chronically ill.
Steven Newmark 08:26
Yeah, absolutely. Absolutely. Moving on, the CDC is going to stop reporting daily cases of COVID and is instead moving to weekly cases.
Zoe Rothblatt 08:34
So yeah, this comes after two years of nearly constant daily updates. This feels like a big change for me.
Steven Newmark 08:42
It definitely is. It’s a sign of the times that we’re moving on from where we had been, which is a good sign, I suppose. The CDC said the weekly report are going to allow for more flexibility and will reduce the burden on state and local governments.
Zoe Rothblatt 08:54
It’s also similar to how the CDC covers the flu, which is typically on a weekly basis. So you know, that’s more comforting that we’re going in line with protocols for other diseases or viruses.
Steven Newmark 09:05
Yeah, absolutely. That’s a really good point. Yeah. So let’s turn to our topic of today. We’re almost at the three year mark, if you can believe it since the first case.
Zoe Rothblatt 09:14
Yeah, my heart is like heavy hearing that. It’s a big deal.
Steven Newmark 09:18
I know. It’s crazy. Well, there’s still a lot we don’t know. So first and foremost, we still don’t know exactly where the virus came from.
Zoe Rothblatt 09:24
True, yeah! We still don’t know that. We had an episode on that maybe a year ago now.
Steven Newmark 09:29
Yeah, we haven’t been able to confirm definitively that the virus came from the seafood market in Wuhan, China. There are peer reviewed papers on the theory, but we still don’t know key details like where in the market that happened or which animals were involved? What drove this? And the Chinese Communist Party is not allowing outside investigators in to try and solve that, you know, in order to better situate ourselves for future diseases.
Zoe Rothblatt 09:53
Yeah and the other theory that we haven’t I guess debunked or ruled out is the possibility that the virus escaped from a lab in China. And you know, when we think about why it’s important to know this, it’s important for your disease surveillance, monitoring and preventing other infectious diseases. We’ve seen monkey pox and polio in the news recently, and we really do want to have our public health measures in place to prevent outbreaks.
Steven Newmark 10:17
Yeah, I know. To me, it’s just it just boggles the mind that we can’t get in to investigate to learn what happened so that we can help better prepare ourselves for the future. I mean, this could happen again, if we don’t learn from it.
Zoe Rothblatt 10:29
The next thing we don’t know is, how is the virus evolving? And will there continue to be new variants?
Steven Newmark 10:36
Right. And, you know, scientists believe that it will continue evolving to become better at escaping the human immune system, but researchers are uncertain about what future variants might look like.
Zoe Rothblatt 10:46
And yeah, I mean, we know that immunocompromised people play a role in new variants. And this is because unfortunately, the immunocompromised body is like a good breeding ground for these variants. But we also don’t know the extent to which that occurs, which is, you know, there’s a few unknowns here. It’s like, will the virus keep evolving? Will there be new variants and how do immunocompromised people play a role in this, which is a bit scary for our community? We want to make sure that we’re staying safe.
Steven Newmark 11:14
Yeah, no, absolutely. Speaking of variants, just one interesting note: over 90%, I think we’re… I think it’s at 92%, even higher than that, of cases are still of the Omicron B4 and B5 variety in the United States. So it’s been quite a while that we haven’t seen a mutation to another variant, which is even more reason, by the way, why folks should follow Zoe’s lead and get the bivalent booster, which is specifically targeted for these variants.
Zoe Rothblatt 11:38
Yeah, you know, that kind of leads into the next unknown, where it’s like, can we develop a vaccine for future variants? You know, we kind of have been like a step behind the virus. Now, it feels like based on what you were just saying, it feels like, you know, we’re at a good spot with the bivalent vaccine for Omicron, because those are the dominant strains still, but it almost feels like we’ve been chasing it a step behind. So in the future, could we be able to develop a vaccine ahead of time that will predict a new variant, kind of like how we do for the flu each year?
Steven Newmark 12:09
Yeah, there is a nasal spray vaccine in the pipeline, which experts hope will work in the respiratory tract more, although we’re not certain about that. Experts say we should expect to get a COVID shot every year, like the flu shot, which is adapted each year for the best guess on the variant. So we’ll see.
Zoe Rothblatt 12:25
Also, on that topic, our community is really interested in measuring the level of antibodies and seeing you know, what amount is a good amount that you’re protected? I know, antibodies are just one part of the picture. There’s also the T cell response. So it’s like a little bit hard to get a definitive yes or no. But you know, as we develop vaccines and look at protection, I know our community wants more research on the level of antibodies needed to stay safe.
Steven Newmark 12:51
It would be incredible almost to have an at-home kit to be able to test yourself, not having to go to a doctor. Just test yourself and when your antibodies hit a certain level, you know it’s time for another shot. Or conversely, if they’re at a certain level, you may not need another vaccine at that moment, which is good to know as well.
Zoe Rothblatt 13:08
So you have at-home kits. I’m still loving the at-home test, like whenever I feel like I have like a little something or I was in a crowded area. I just go to the bathroom take out from the closet, my at-home kit, and I feel so good about it!
Steven Newmark 13:23
Yeah, I know we’re getting off topic but I also wonder what it would take to develop an at-home kit for flu as well. Or a two and one.
Zoe Rothblatt 13:31
Two, and one would be great.
Steven Newmark 13:32
Yeah, just to know. Another one we’re still looking into is long COVID. According to the CDC, one in five folks with COVID go on to develop long COVID.
Zoe Rothblatt 13:42
One in five is a huge amount. First of all, we really don’t know how long, long COVID is, you know, is it a chronic disease for the rest of your life? Is it symptoms for a few months? It’s really different for everyone it seems like right now. We don’t know what’s driving it and we just don’t know too much about it. And to think that one in five are getting symptoms that lasts longer is a tremendous amount of people that are in pain or you know, just struggling day to day.
Steven Newmark 14:07
Yeah. And what does it mean for the immunocompromised community?
Zoe Rothblatt 14:11
Sure, if you already have conditions and underlying conditions, and now you have this other thing on top, it’s like probably really, really challenging to deal with and we need to answer some of these questions in order to get effective treatments.
Steven Newmark 14:24
Absolutely. Another question is why does the severity differ by age and by person? When can high risk individuals return to a normal life?
Zoe Rothblatt 14:33
It’s true, you know, we’ve seen with COVID, the younger the patient, the less the risk. You know, just given like a healthy population, kids have been spared from, you know, a lot of the brutal severe infections, but the weird thing is that people with similar health profiles can have a different severity. I mean, I think we saw this really in the early days of COVID. It was like so random who would end up in the hospital, now we have vaccines which prevent against severe illness, so it isn’t maybe as obvious, but it was just like there was no pattern or reason to who got the severe illness it felt like.
Steven Newmark 15:06
Yeah, no, absolutely. You know, people with similar health profiles have different severity levels. Also, when we talk about returning to normal life, that means something different to different people. And if you’re immunocompromised, you, of course want to be sure to stay up to date on your vaccines and preventive measures if recommended.
Zoe Rothblatt 15:21
Yeah, you know, it’s true. There’s no timeline on when COVID’s over. We talked about this at length, and you know, we’ll continue talking about it because it matters to our community and knowing your risks and talking to your doctor is just such an important piece of that timeline as we all figure it out together. All right Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 15:41
Well, I learned that despite us being three years in, there’s still so much we don’t know about COVID.
Zoe Rothblatt 15:47
And Steven, I learned from you about the new rule that’s going to help patients access their electronic health records digitally.
Steven Newmark 15:55
Excellent. Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to thehealthadvocat[email protected]. Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:06
And who knows whatever you’re sharing may be included in our listener feedback portion of future episodes.
Steven Newmark 16:11
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 16:16
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 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 16:33
I’m Steven Newmark. We’ll see you next time.
Narrator 16:39
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 3- “Patient Stories Move The Needle” – Nathaniel Brown from the Chronic Disease Coalition
Chronic diseases affect the health and quality of life of millions of Americans, with the Centers for Disease Control and Prevention (CDC) reporting that six in 10 adults in the U.S. have a chronic disease. Since the complex health care system continues to pose challenges even for the most informed patients living with a chronic disease, the need for advocacy is vital to taking a stand against unfair or harmful practices.
In this episode, Nathaniel Brown, Director of Advocacy at the Chronic Disease Coalition, shares his experience advocating on health care issues before state legislatures and discusses why patient advocacy is key to ensuring better outcomes for all people with chronic disease.
“What our ambassadors do is they connect with their legislators, whether at the state or federal level, and then we’re here to support them… [and to] help them prepare for the meeting, follow up, set the meeting, that kind of thing… And so we really try and make it an easy process for them and an effective process, too, because when it comes to health care advocacy patients, patient stories is really what moves the needle,” says Nathaniel Brown.
“Patient Stories Move The Needle” - Nathaniel Brown from the Chronic Disease Coalition
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Nathaniel Brown 00:08
Progress happens in inches, but each year it does feel like we see progress. And that’s kind of the beauty of working at the state level. Things move a little bit quicker and policy impacts happen a little bit more immediately.
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 00:31
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:36
Our goal is to help you understand what’s happening in the healthcare world, to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts, we have so many to choose from!
Zoe Rothblatt 00:49
We sure do. And as a reminder to our listeners, you can check them all out at ghlf.org/listen. This week, we’ll give a shout-out to Talking Head Pain hosted by our colleague Joe Coe. One of the latest episodes features a conversation with Hannah Frost, and Joe and Hannah really just discuss power climbing was migraine, the effect migraine had on Hannah’s career and how she was able to come back to the sport with the help of the community.
Steven Newmark 01:15
Power climbing! Very cool!
Zoe Rothblatt 01:16
Very cool. All right, let’s start with a listener comment. Ready, Steven?
Steven Newmark 01:20
I am ready.
Zoe Rothblatt 01:21
This one is from Rachel M. who wrote: “Relatable show! Thank you.”
Steven Newmark 01:24
Thanks, Rachel. And thanks for listening. We encourage everyone to be sure to tell a friend and hit that subscribe button.
Zoe Rothblatt 01:30
This week, we have a special guest with us Nathaniel Brown, who’s the Director of Advocacy with the Chronic Disease Coalition, and he spoke with us about his experience advocating on healthcare issues before state legislatures.
Steven Newmark 01:43
Yeah, we had a really great conversation with him about the policies he focuses on with the Chronic Disease Coalition and the importance of patient advocacy. But first, we have some news updates.
Zoe Rothblatt 01:51
So our first news update Steven, I know you love these, we have the Patient Support Program quick poll results.
Steven Newmark 01:58
I love it.
Zoe Rothblatt 01:58
So this time we had asked about the flu vaccine and people’s plan to get that protection. Are you ready for this? Yes. 62% have spoken to their doctor about getting the flu shot and of those 97% said their doctor recommended getting the flu vaccine.
Steven Newmark 02:14
I am curious who those 3% are. What is up with that?
Zoe Rothblatt 02:18
Well, maybe they’ve had an allergic reaction or something. Right. Fair enough. Fair enough. But yeah, I got my flu shot yesterday, and I have the sore arm and I’m a little fatigued, but mostly really optimistic about the protection that I now have.
Steven Newmark 02:33
Great! Good for you. I will be getting mine shortly as well.
Zoe Rothblatt 02:36
Oh, nice. And then, just rounding up the poll: 94% said they do usually get their flu shot and 71% plan to get it, and 23% have already got it. So it looks like our community is getting that protection this flu season.
Steven Newmark 02:50
Excellent. In other news, Medicare Part B premiums are set to actually decrease. You don’t hear that too often in the health care world, of premiums going down. The Biden administration announced that Medicare Part B premiums will decrease in 2023, making it the first time that this cost has been lowered in more than a decade.
Zoe Rothblatt 03:08
More than a decade, that’s really amazing, especially because I know in 2022, Medicare B premiums rose by a decent amount, I think around 14%. So you know to have that come down in the next year, especially if it hasn’t in more than a decade, is really promising.
Steven Newmark 03:23
Yeah, I don’t want to get too excited. They’re being lowered by 3% or $5.20 per month, going from $170.10 a month to $164.90 per month, and the annual deductible will also fall from $233 to $226. But again, these are not eye popping numbers, but going down is always better than going up.
Zoe Rothblatt 03:45
Yeah, I think that every dollar counts, especially when you live with a chronic illness like our community does. It’s really expensive to continuously pay for it. So you know, at least this is something and of course we always hope for more because everyone should have access to affordable health care.
Steven Newmark 04:01
Absolutely. Every dollar does count. You’re right about that.
Zoe Rothblatt 04:03
So you know our last piece of news here: the CDC says masks are no longer required in some, I’ll emphasize that some hospital and nursing homes. So basically they said that facilities and areas without high transmission can decide for themselves whether to require, you know, everyone, doctors, patients and visitors to wear masks or not.
Steven Newmark 04:24
Yeah, the agency now has exceptions for masking and I’ll put this in quotes “remains recommended”. These include situations like during an outbreak among patients or when caring for patients who are moderately to severely immunocompromised.
Zoe Rothblatt 04:37
You know, this actually reminds me of a few months ago. We were talking about how there was some uproar in our community when patients came into the hospitals with N95s and they were asked to put on a surgical mask handed out at the door instead, and they said: “why are you requiring me to wear a less protective mask, I don’t really feel safe in this health care setting” and the quote you just said when caring for moderately or severely immunocompromised patients, that says masks are required but sometimes it’s not obvious if that person is or isn’t. So someone may walk in the room without one or, you know, they may go to the desk. And it’s not that it’s embarrassing to ask but sometimes it’s just so exhausting to continuously advocate for yourself like that.
Steven Newmark 05:17
Yeah, I can’t imagine any well respected health care facility, doctor’s office included, and certainly a hospital or nursing home, that would not require it. It just doesn’t make any sense, particularly as we enter flu season. You know, we’ve spoken about this before, it seems like this should be the norm going forward, like: “hey, let’s keep viruses at bay”. And you know, COVID itself is still out there. It’s even more virulent than flu is. And as I said, now, you’re adding layering on top of that, we’re entering flu season. I just… it bothers my mind that forgetting about what the CDC’s guidance is, or what local regulations say, how any health care facility would not require it, I can’t understand it.
Zoe Rothblatt 05:56
For sure. I actually saw my rheumatologist yesterday, and often you have to change into that gown when you’re at the doctor, and typically they say what clothing garments stay on, and she said: “And your mask remains on.” And I was really relieved that she had pointed that out. And now I know that she points that out to her patients, and I just felt so comforted by that, there wasn’t a question of you know, what the expectation is. It was “keep your mask on” and their signs all over “keep your mask on”. And I hope that continues. Because as we’ve seen with guidance, you know, when it’s lessened people kind of are quick to jump on it and throw it out the door, and it’s hard to say “some” and not “all” require masks. So this makes me a little nervous.
Steven Newmark 06:34
Yeah, look, there are certain places in this world that I want a little heightened sense of security when it comes to keeping us safe from viruses. Hospitals, for sure, I want masks, I want people in restaurants washing their hands a heck of a lot more than I wash my hands. And that’s just the way it should be in my humble opinion.
Zoe Rothblatt 06:52
Amen to that! I totally agree. Patients should feel comfortable accessing the care that they need without fear of contracting another virus because basic precautions aren’t being met.
Steven Newmark 07:02
Well, 73% of the country, as of our recording, is still having high rates of transmission. So you should expect to still see masks in your local health facilities.
Zoe Rothblatt 07:11
I mean, I would say that’s good news, we expect to see masks but not great news to hear that there’s high rates of transmission. So a little bittersweet hearing that but I hope to still see the masks.
Steven Newmark 07:22
Well, like we mentioned, we spoke with our friend Nathaniel about patient advocacy from the Chronic Disease Coalition.
Zoe Rothblatt 07:29
And he’s here today to talk about his experience advocating on health care issues before state legislatures. Welcome, Nathaniel!
Nathaniel Brown 07:37
Hey, thank you very much for having me.
Zoe Rothblatt 07:39
Well, why don’t you start by introducing yourself and you know, the Chronic Disease Coalition and your role there.
Nathaniel Brown 07:45
So I am the Director of Advocacy for the Chronic Disease Coalition. We’re a nationwide nonprofit focused on education and advocacy in the health care space, specifically for Americans with chronic illness. We represent people with, you know, from multiple sclerosis, to cancer to arthritis to psoriasis, we’re a big tent organization. You know, something like half of Americans are living with a chronic disease and so we focus on the issues that are important to them and their families, and help advocate and shape public policy to their benefit. So my role as the Director of Advocacy is really to keep an eye on state legislatures, in all 50 states and Congress to see what is currently being debated, where we can plug in, where we can help our patient advocate for themselves, and support them in their own advocacy journeys, and really just help raise their voices in the public process.
Zoe Rothblatt 08:37
That’s awesome and such important work. You mentioned that you follow the state legislatures and what’s going on. Talk to me about some of the health care issues that are most important to you and your patient community.
Nathaniel Brown 08:49
Absolutely. Every year, we undergo a very comprehensive policy development process where we bring in our patient advocates, we bring in our board members and our members and partners in each of our areas. And so what comes out of that is is a policy platform, and this year, we are reforming step therapy and prior authorization, expanding telehealth when it makes sense for the patient and their provider, and then the Medigap issue as well. We have really seen a need increase in several states for access to Medicare supplemental insurance. And so that’s been sort of our top tier issues. But we also work very heavily to pass living donor protections, to establish chronic kidney and rare disease task forces at the state level so that the patient voices is sure to be represented and is codified. And we also weave in equity work and issues that are important, you know, to all of our patients that kind of weave into each of those separate policy buckets.
Zoe Rothblatt 09:48
You mentioned step therapy, which is also a big one for us. And for those who don’t know, this is when an insurance company essentially denies your medication and say that you have to try a different one and fail on that first before you can get the one originally prescribed by your doctor. This is an issue we’ve been fighting for for years. There’s also federal legislation that we’ve been trying to champion. And I’m wondering, from your perspective, what types of progress have you seen over the years with either step therapy or an issue like that, where it feels like we’re constantly trying to raise our voices, and maybe it’s not moving forward so quickly?
Nathaniel Brown 10:21
Yeah. It can be frustrating for sure. Um, as you know, progress happens in inches. But each year, it does feel like we see progress. And that’s kind of the beauty of working at the state level, things move a little bit quicker and policy impacts happen a little bit more immediately. This year, we’ve seen progress on step therapy in Florida. Massachusetts is working on a very comprehensive bill. Colorado passed a comprehensive bill. And it’s always a little bit of a give and take because step therapy reform is common sense to patients and advocates like us, but it’s not necessarily a popular notion. And so we work in different levels. So that could look… so when you’re talking about step therapy reform that could go into certain buckets, right? So we could be working to pass, you know, peer reviews, or we could ensure that there’s adequate notice time so that when an insurance company is going to force a patient to fail first on another medication they know about it beforehand. And so there’s a lot of different avenues to make progress and sort of chip away at this big issue. And like I said, each state is different. I think that there’s a very strong effort at the federal level, which we’re also engaged in to get a nationwide comprehensive legislation passed. But yeah, progress happens in inches, for sure.
Zoe Rothblatt 11:32
And, you know, how can patients get involved in that progress? What kind of work do you do with people living with chronic disease to help raise their voice?
Nathaniel Brown 11:40
Yeah, so that’s really our North Star at the Chronic Disease Coalition. You know, our mission is to help patients advocate for themselves and to support them on that journey. And we have a very active ambassador program, with ambassadors in most states. And when we do that policy development that I mentioned, and when I’m talking to them, almost always, they have experienced with step therapy. Because their condition is chronic, it’s going to be expensive to manage and so they’re very concerned that they’re going to be forced to try and fail on a drug that their doctor hasn’t prescribed. And so the message of kind of protecting that patient provider relationship is really what guides us and is an easy one for patient ambassadors to communicate to their legislators. And so what our ambassadors do is they connect with their legislators, whether at the state or federal level, and then we’re here to support them, you know, help them prepare for the meeting, follow up, set the meeting, that kind of thing. Basically, to make it as easy as possible, because right, they have day jobs. This is what we’re paid to do. And so we really try and make it an easy process for them. And an effective process too, because when it comes to healthcare advocacy, patients… patient stories is really what moves the needle. And I’m sure you know, this. I mean, when a patient comes in and says, you know, I missed Xmonths of treatment on… that I knew worked, but I had to switch jobs, and I switched insurance plans, and now I’m back where I started, and I’m having, you know, health problems because of that, that’s a lot more impactful than sort of the legislative lobbying advocacy work that we do. So that’s why we try and connect patients with decision makers and move the needle that way.
Zoe Rothblatt 13:13
And what types of calls to action do you send out to patients, like if patients are looking to get involved, what kinds of things could they get involved with?
Nathaniel Brown 13:21
Yeah, so a big part of my job is, you know, keeping eyes and ears out for legislation that could impact patients, but when we send out a call to action it’s typically around a bill that’s got some legs, it’s moving in the legislature. We don’t do a lot of opposition work, I think, though, that’s kind of why I love this job because the legislation we support is typically fairly bipartisan, and it’s positive. And so we’ll send out a call to action, asking our advocates to connect with their legislators, customizing messages, and doing that kind of thing. That’s obviously sort of the surface level advocacy work, we exist to help them along that sort of advocacy ladder. And so that’s where our ambassadors come in, you know, we set up meetings between them and their legislator, help them you know, prepare to testify, and then kind of work our way up. And so there’s sort of a suite of options in terms of patient engagement, but our calls to action are kind of where to start.
Zoe Rothblatt 14:13
And what is your advice for someone looking to get started to, you know, raise their voice and advocate but is maybe a little nervous. You know, speaking to a legislator can sound quite intimidating. You just mentioned making things easy to understand, policy is complicated. What’s your advice for someone looking to get into that?
Nathaniel Brown 14:29
Yeah, you know, beyond the obvious, right? Go to our website and sign up for our newsletter, you know, follow us on social media, I would say, you know, just don’t be afraid of it. Because I meet with ambassadors and with legislators frequently, and I can tell you, I’ve never seen a legislator, be aggressive or mean or anything like that towards a patient who is sharing their story. They are called the public service. They want to represent their constituents, but they don’t have all the answers and they don’t have all the stories and patients provide that and they really have an opportunity: find your legislator and ask for a 15 minute meeting just to let them know you’re a constituent. You live with X chronic disease, and you care about positive health care policy. That’s that’s really all it needs to be. And I think that there’s no reason to be intimidated by an elected official. They’re there to serve.
Zoe Rothblatt 15:18
Well. Thank you. And thank you for joining us on The Health Advocates.
Nathaniel Brown 15:21
Yeah. And thank you, I really believe in this work. As I know you both do, it’s really important work. And I’m blessed to do it.
Steven Newmark 15:28
Thank you, Nathaniel. Well, that was a great discussion.
Zoe Rothblatt 15:30
Yeah, it’s always great to hear what our peers and colleagues around the country are doing to help people living with chronic disease.
Steven Newmark 15:37
Absolutely.
Zoe Rothblatt 15:39
Well, Steven, that brings us to the close of our show, what did you learn today?
Steven Newmark 15:42
Well, I, you know, I’ll just say, I really learned, you know, once again, the importance of having different groups and different organizations to maximize our numbers, because when patients come together, we really are more powerful. And so it was great. It was a great discussion,
Zoe Rothblatt 15:56
And I learned from you that some of the premiums and health care costs and Medicare Part B are coming down. And while it may be a small change, incremental change does matter.
Steven Newmark 16:07
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to thehealthadvocat[email protected]. Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:18
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:22
Also email us if you want to subscribe to our weekly newsletter.
Zoe Rothblatt 16:27
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 let your friends and family know about us. I’m Zoe Rothblatt.
Steven Newmark 16:41
I’m Steven Newmark. We’ll see you next time.
Narrator 16:46
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 2- It’s Complicated: Inflammatory Bowel Disease Diagnosis and Treatment
The prevalence of inflammatory bowel disease (IBD) has steadily risen over the past two decades. IBD, which includes Crohn’s disease and ulcerative colitis, is difficult to diagnose because symptoms can be similar to those of other conditions and vary from person to person. In this episode, Dr. Neilanjan Nandi, Associate Professor of Clinical Medicine at Penn Medicine, tells us how he advocates for patients and discusses the importance of reducing disparities, especially when it comes to IBD.
“It’s all about the patient. It’s not about the team; it’s about the patient, and the team serves the patient. This is the standard of care. And if you don’t elevate that patient’s voice, if you’re not listening to that patient’s voice, then it doesn’t matter if you have the greatest treatment. The treatment only matters if the patient tells you that everything that’s impacting them by IBD gets better,” says Dr. Nandi.
It’s Complicated: Inflammatory Bowel Disease Diagnosis and Treatment
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Neilanjan Nandi 00:06
At the end of the day, it’s all about the patient. That’s what medicine is about. It’s not about the team, it’s about the patient. And if you don’t elevate that patient’s voice, if you’re not listening to that patient’s voice, then it doesn’t matter if you have the greatest treatment. The treatment only matters if the patient tells you that everything that’s impacting them by IBD gets better.
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 00:39
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from!
Zoe Rothblatt 00:58
We sure do. As a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout-out to Healthcare Matters. Our colleagues, Conner and Robert do a deeper dive on policy issues and they are back for season three. So definitely check it out!
Steven Newmark 01:14
Excellent. I know I will be checking it out for sure.
Zoe Rothblatt 01:17
For sure. And let’s check out a listener comment. Are you ready Steven?
Steven Newmark 01:20
I am ready.
Zoe Rothblatt 01:21
This one is from Teresa K., who wrote: “You guys do such a great job at breaking down the weekly news,”
Steven Newmark 01:27
Thank you, Teresa. We do what we can and we’ll continue doing it as long as you keep listening!
Zoe Rothblatt 01:32
Thank you so much. Okay, Steven, this week, I’m really excited for you to hear the interview I had with Dr. Neil Nandi. He’s a gastroenterologist specializing in inflammatory bowel disease. And I just had a really wonderful conversation with him about how he advocates for patients, how patients are partner in care and the importance of reducing disparities, especially when it comes to IBD. So I’m really excited for you and our listeners to hear it!
Steven Newmark 01:58
I’m excited too, as someone who’s gone through the IBD patient journey. I’m excited to hear what Dr. Nandi says.
Zoe Rothblatt 02:05
Awesome. So shall we dive into the news?
Steven Newmark 02:07
Absolutely. Let’s do it.
Zoe Rothblatt 02:08
Okay, well, this first bit of news is causing a bit of uproar. President Biden said that the pandemic is over. What are your thoughts here?
Steven Newmark 02:16
That’s right. So earlier this week, on 60 Minutes, President Biden said the pandemic is over. To be fair, the full statement was: “The pandemic is over… we still have a problem with COVID, we’re still doing a lot of work on it. But the pandemic is over.” Of course, as many have pointed out, 400 people a day are still dying of COVID. That certainly doesn’t feel like the end of a pandemic.
Zoe Rothblatt 02:36
And also what we pointed out in our last episode, we sort of just did a recap of the landscape of what’s going on and whether or not it feels like, you know, COVID is still a threat. I think the consensus you and I came to is that it is. Multiple times a day, we’re thinking about it, planning around it. You know, it really is a big part of our life. I know, after this statement was said by the President, so many people in our community started, you know, direct messaging us on social media saying: “Have you heard about this? You know, we don’t feel safe. This is a bit scary for us to hear someone in a leadership position declare it over, we’re still feeling left behind in general. And this is kind of making it worse for us.”
Steven Newmark 03:15
Yeah, no, absolutely. And I would agree with that sentiment. Just from a political calculation, when the President says that the pandemic is over, that is going to make it hard for that President to then ask for funding to help deal with COVID in the future. So that is problematic. But getting back to the idea of: Is the pandemic over? When is the pandemic going to be over? I mean, certainly in March 2020, that was the first question: When is this gonna be over? When is this gonna be over? And it just kept hitting us: When is this gonna be over? And I feel as though we went through several stages. In the early days, there was this vision of it being over, oh, we’re all gonna go on lockdown. And eventually it will go away.
Zoe Rothblatt 03:51
Right, two weeks to flatten the curve!
Steven Newmark 03:53
Right! Flatten the curve, remember that? Oh, boy! There was a phase where we thought: well, if enough people get vaccinated, we still might be able to get to herd immunity and essentially kind of stop the virus from from spreading too much. And that might be the end of the pandemic. Then that became impossible. So we sort of got this next phase where we believe that the virus could circulate. But we sort of thought maybe it’ll be like other coronaviruses that cause colds or you know, or something, even the flu. However, I feel as though we’ve reached this situation where COVID is actually worse than the flu. It’s not like, you know, sometimes we joke around here and say it’s like a second flu, but it is worse. I mean, 400 deaths a day for COVID is not akin to the flu.
Zoe Rothblatt 04:36
Yeah, so I actually, you know, thinking about that. I think we’re in the same line of thought because I looked up what are annual deaths in the US for a number of things, and you know, when you look at COVID, there’s been 1 million deaths just this year.
Steven Newmark 04:49
Right.
Zoe Rothblatt 04:49
And the flu over the past couple of years, data from the CDC shows that we expect 12,000 to 52,000 deaths annually from the flu. So that’s quite a difference, that’s not comparable. Oh, yeah. And when you think about a few other things that are really prevalent in our life, we get in a car every day. So security-wise, how many car accidents are happening? The CDC says less than 40,000. You know, gun control has been a really big conversation. How many, you know, gun related deaths are there? Less than 40,000. Cancer, around 600,000 each year. When you think that COVID is a million just this past year, it really is still a looming issue.
Steven Newmark 05:26
Yeah, I also was looking up some numbers. And there was an estimate that Omicron over the past several months has infected 80% of the U.S. population. So by contrast, I was looking at this, the flu sickens an estimated 10 to 20% of Americans annually.
Zoe Rothblatt 05:42
That’s a big difference, like from 80, to 10 to 20 percent.
Steven Newmark 05:46
Yeah, in a really bad year, the flu could infect as many as 50%. And going forward, there’s a hope that COVID would get to 50%. But certainly there’s a disparity because one, for flu, it’s at the very high end, whereas for COVID, that would be at the very low end.
Zoe Rothblatt 06:00
So yeah, let’s talk about that for a minute. Flu is, I guess, kind of what you would call endemic in a public health term. You know, it’s disease that’s usually present in the community, and it’s not necessarily desired. But it’s like, that’s the observed level: we expect this amount of flu each year. And, you know, I was wondering, you know, is COVID endemic? Are we at that level? And it’s kind of interesting, because when you look that up, it’s… experts say, you know, there’s no accepted metrics, or defined international rules that tell us when it gets to that point.
Steven Newmark 06:32
Yeah, I don’t have an answer. So let’s take it out of public health and academia. There’s just… when there’s a feeling of normalcy with COVID, if you will, I think that’s when the pandemic is over, at least the official pandemic, and you’re down to an endemic situation. And I think certainly that feeling is widespread, whether you and I share that feeling, and others in the chronically ill community share that feeling. That’s certainly the prevalent feeling in the world. Now, I think that we’re aware of COVID. Someone like myself still wears an N95 mask when I’m indoors with people I don’t know, you know, in a supermarket, or if I’m traveling on public transportation or airlines. A lot of others don’t. But my point is, it hasn’t stopped me, it hasn’t curtailed me from doing much of anything lately.
Zoe Rothblatt 07:16
Yeah, I would agree with that. And, you know, that just got me thinking, as you know, were The Health Advocates and people were upset by this statement. So what can you do? You can always call your local elected officials and talk to them about where you feel safe? or where not, and what’s going on with COVID and ask for more awareness and precautions around it.
Steven Newmark 07:36
Yeah, absolutely. I think that, again, I know that this depends where you live, but I’ve been flying recently, very few folks have masks. But I feel as though it’s totally socially acceptable for me to be wearing a mask, you know. And so I think that the more we continue to allow policy makers, people in certain positions to understand that the pandemic or endemic, whatever we want to call it, is continuing for folks who are chronically ill, the more folks that know that the better.
Zoe Rothblatt 08:02
100%. And I think like a lot of this is touching on the mental health aspect. And another interesting piece of news, I saw a health panel recommends that U.S. adults forget routine anxiety screening. Yeah, so this is the first time the U.S. Preventive Services Task Force has recommended anxiety screening and primary care for adults without symptoms, and the proposal’s open for public comment until later in October. So you know, it’s not an official rule yet, but are expected that it should become one.
Steven Newmark 08:34
What does that mean: anxiety screening and primary care. Does that mean, when you have a well visit with your primary care doctor, there’s a screening set of questions that they ask or…
Zoe Rothblatt 08:44
That’s what would assume, just like how, I guess you know, you screen for other diseases in your primary care, you know, you get bloodwork you check your cholesterol, diabetes, like blood sugar, and things like that. Now, I would assume there’s also a mental component where they ask certain questions, and then are able to refer you to the appropriate care.
Steven Newmark 09:02
Yeah, absolutely. I would advocate for that, regardless of what the U.S. Preventive Services Task Force says. I don’t see any downside to discussing that with your primary care physician.
Zoe Rothblatt 09:13
I think that’s actually an important point. Like sometimes it’s really hard to bring things up like mental health, and especially in a doctor visit, that could only be like 10 minutes. And sometimes you don’t even get the opportunity to speak like any of your talking points, let alone to bring up something like a little emotional. It helps to break that ice if the provider starts that conversation.
Steven Newmark 09:31
Yeah, I would say one other thing. It also breaks the ice if there actually is a recommendation from something like this, or you see a news article mentioning it. It’s definitely an icebreaker, or: Hey, I saw this news article and XYZ. As a side note, I saw a news article about a cure for baldness that dermatologists are using and I’m like: well now I can bring that up with my dermatologist!
Zoe Rothblatt 09:49
Well, we’re all about shared decision making. There’s so many times I’ve like printed out stuff and brought it to my doctor and talked about it. Okay, Steven that wraps up our news segment and like I mentioned, I spoke with Dr. Nandi, who is an academic gastroenterologist specializing in inflammatory bowel disease. And he’s here today to talk to us about how he advocates for patients and the importance of minimizing disparities in IBD care. Welcome to The Health Advocates!
Dr. Neilanjan Nandi 10:15
Thanks for having me, Zoe, it’s a pleasure to be on!
Zoe Rothblatt 10:18
Thank you so much for joining us. Would you like to kick it off by introducing yourself and give a snapshot of what you do and things you’re involved in?
Dr. Neilanjan Nandi 10:26
Sure. My name is Neil Nandi. I’m a physician specializing in inflammatory bowel disease, the care of Crohn’s disease and ulcerative colitis at the University of Pennsylvania. A lot of my work is in physician awareness and education, and also patient health advocacy in the IBD space. I am a proud member of the Crohn’s and Colitis Foundation and the United Ostomy Associations of America. And in those organizations, I’ve been very blessed to conduct a lot of patient and clinician directed education. And most recently, I’ve been focusing on raising awareness about inflammatory bowel disease, which is on the rise in South Asian patients of descent.
Zoe Rothblatt 11:02
So tell me about that. It’s on the rise. Was it always there? And we just didn’t know about it? Or is it really, you know, on the rise recently? What’s going on there?
Dr. Neilanjan Nandi 11:11
Yeah, you know, this is a fascinating story, actually, my father had Crohn’s, and that was in the 1970s, early 1970s. And at that time, his inflammation, the physicians here in the US were like, your people don’t get Crohn’s. What are you talking about? But ultimately, he was diagnosed with that was response to steroids only, of course. And what we’ve seen decade after decade, where IBD was once not very prevalent in South Asia itself, we’ve seen increasing prevalence of Crohn’s and ulcerative colitis in South Asia and in descendants of South Asian immigrants across the globe. So we see this increase. And it’s, South Asians, and it’s also pretty much other ethnic groups, we’re seeing an increase as well. And we don’t know why. But we believe there’s an environmental trigger that’s potentiating this. We don’t think that it’s over our better diagnosis. We don’t think – certainly that they were being missed. But we think there’s an environmental trigger, leading to an increased prevalence.
Zoe Rothblatt 12:07
And if this is a group that, you know, historically hasn’t been diagnosed with IBD. And now is, what does that mean for you know, diagnosis rates, access to treatment, things like that? Are our people getting the care that they need?
Dr. Neilanjan Nandi 12:19
Well, in short, the answer is no. Now the ramifications of getting a chronic illness diagnosis are multifold. Right? Not just the physical and emotional but the mental and then also the cultural stigma that one individually perceives, that one the family unit perceives, and fears, right, because it’s stigmatized. When it comes to South Asian culture, and this is not unique, just to South Asians, but it’s a particularly severe impact it can have, which is negative. Meaning if you have Crohn’s or colitis or gosh forbid, you need surgery, or diverting ostomy for perianal fistulizing disease, right? Now it affects one’s self esteem, but also marriage ability. How others may perceive you in marriage, in terms of not just finding a partner, but also childbearing, you know, or fathering a child, right, depending on your role? So the cultural aspect can also impact what treatments you might accept, you know, not just accepting the disease status, true, but whether you would accept a traditional Western med versus a complementary alternative medical therapy, like Ayurvedic medicine or herbals or other supplementations. So lots of different ramifications there that inhibit acceptance and prevent early treatment, early access.
Zoe Rothblatt 13:30
And what kinds of things do you tell your patients when they come to with these concerns? I mean, if they even do at all, it’s obviously very emotional subject to bring up and sometimes challenging, but how do you help patients advocate for themselves in their everyday life?
Dr. Neilanjan Nandi 13:46
Yeah, so honestly, even with South Asians, my message is true that regardless of your skin color, ethnic background, you know; one is you should always, you know, have some faith in your doctor, but that faith has to be earned. And if you don’t feel that that is happening, where your physician or nurse practitioner, or PA is going above and beyond to educate you, teach you, help you understand why decisions are being made, then there’s an educational gap there. So I always say, arm yourself with education, learn, read, and ask questions. I think patients more than ever have to feel empowered, that it is okay and right to ask questions. You should trust your clinician, but that is learning. And the way you have the clinician earn your trust as a patient is ask the right questions and be satisfied with the time and clarity of that explanation they take in making it to you. And if you don’t have that, then there’s something awry in your care. Now finding the right source of education. That can be a very challenging matter with all the misinformation there is out there. Right?
Zoe Rothblatt 14:48
Yeah, it’s really hard navigating a new diagnosis and going to Google and just being bombarded with information.
Dr. Neilanjan Nandi 14:56
That’s right. You know, so that’s why, you know, I think we recognize more than ever that with social media being an another media distribution outlet, right, we had radio, we got TV, we got internet, but social is its own beast that information and misinformation propagate. You know in this day and age we have more misinformation than ever on social media! And so several organizations have risen to the challenge. So the Crohn’s and Colitis Foundation of America: ccfa.org has wonderful information. You all your organization has some great links to articles and podcasts on the concept. I’ve perused the materials of course. And then we also need to recognize that inflammatory bowel disease education has to be tailored towards one’s culture and ethnic background and health literacy, of course, right. And so there are several different organizations that are trying to do that. Our organization that we founded the South Asian IBD Alliance, SAIA, can be found at southasianibd.org. We’re actually a physician and patient collaborative. We work together. Our board is docs, dieticians, gut psychologists, and patient advocates, most importantly, that help drive our educational mission. And we actually have a patient advocacy arm known as IBDesis. Desi is the word for someone of South Asia. And it’s IBD, one D as in David, ESI. So that’s our way. At IBDesis and South Asian IBD Alliance, we work together. We do monthly patient webinars, where we have clinicians and patients on a panel, and then open a live Q&A. And by doing so we try to normalize the conversation on IBD. We try to provide good solid trustworthy education, and then be a trusted resource for open question and answer. So that’s been our approach in SAIA. And then we also try to make the information culturally appropriate. Our diet differs from the standard American diet. And so we talk about diet and IBD from a South Asian lens. And similarly, we approach Western medicines like biologics and immunosuppressants through the lens of a South Asian physician and patient, rather than just how we practice in the West alone.
Zoe Rothblatt 17:00
So much of what I’m hearing from you is that patients really do have a seat at the table and are a partner in care. And I think that it’s so important for people in our community to hear that because so often people have had doctors not believe in them, especially with something like IBD, which is such a personal condition to live with. I think it’s so powerful to hear from you that you’re listening to patients, you’re pulling them into conversation, you’re putting them in leadership positions and saying, you know, it really is all about the patient at the end of the day.
Dr. Neilanjan Nandi 17:30
And that’s it. At the end of the day, it’s all about the patient. That’s what medicine is about. It’s not about the team, it’s about the patient, and the team serves the patient. This is the standard of care! And if you don’t elevate that patient’s voice, if you’re not listening to that patient’s voice, then it doesn’t matter if you have the greatest treatment. The treatment only matters if the patient tells you that everything that’s impacting them by IBD gets better, right? So we have this new philosophy, if you will, called patient reported outcomes or PROs. These are actually outcomes that we look for in clinical trials. It used to be that when we give a patient a medicine in IBD, we look to see the decrease in bowel movements, and we do scopes on them and make sure that the intestinal lining, the mucosa, has healed. Those are very important. But we were always failing to ask: how has the IBD affected your quality of life? And have those things gotten better? And many times, we were missing the mark. That’s unacceptable!
Zoe Rothblatt 18:25
Yeah, the labs can only tell so much of the story. There’s a lot there that patients are experiencing. And it’s so important to take into consideration things like patient reported outcomes, because it is your quality of life and your everyday life. And if you can’t participate meaningfully in your daily activities, that’s not okay. You know, we need to figure out a better plan.
Dr. Neilanjan Nandi 18:45
Exactly right.
Zoe Rothblatt 18:46
You know, before we go, I wanted to ask you about your podcast. You host IBD Crosstalk for GI Insights. Tell us about that podcast and the types of discussions you have there.
Dr. Neilanjan Nandi 18:55
I’m very, very fortunate to be the host of that podcast. It’s sponsored by ReachMD, which is a CME company. And they gave me a platform to invite cutting edge guests to learn about cutting edge topics. And it’s called “crosstalk” because we try to talk about interdisciplinary things, the cross-section of rheumatologic, and dermatologic, but also how do we use X-rays? How do we use intestinal ultrasound? How do we use virtual reality as digital therapeutic? How do we think outside the box? So I try to pull in different disciplines rather than just gastroenterologist alone and talk about all these different facets that impact the care of the IBD patient. It’s geared towards an audience of physicians and medical professionals, but we have a lot of patients who listen to it too. And I think that’s great, because patients should not be excluded from the level of conversation that we have as clinicians.
Zoe Rothblatt 19:39
And yeah, I think it helps so much to say it’s open to everyone. Try and listen and feel like you can be your own advocate. And it sounds like you’re helping your colleagues be the best advocates they can be for patients as well. So thank you for all you do.
Dr. Neilanjan Nandi 19:52
I appreciate it. Thank you very much for having me.
Steven Newmark 19:55
Wow. Zoe, that was a really great interview.
Zoe Rothblatt 19:57
Thank you. Yeah, we learned a lot. And speaking of learnings, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 20:03
Well, I learned from you about the various specific numbers that afflict deaths in the U.S. when it comes to COVID, flu, car accidents and the comparison I found to be quite illuminating.
Zoe Rothblatt 20:12
And I learned from Dr. Nandi just how important patients play a role in their care and how, you know, through the lens of a provider. It really does help when patients are speaking up and advocating.
Steven Newmark 20:24
We’d love to hear from you about your advocacy stories. Send your email to thehealthadvocat[email protected]. Or better yet, include a short video or audio clip.
Zoe Rothblatt 20:33
And who knows, whatever you’re sharing may be included in our listener feedback portion of future episodes.
Steven Newmark 20:38
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 20:43
Well, everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 21:00
I’m Steven Newmark. We’ll see you next time.
Narrator 21:05
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 1- The COVID-19 Pandemic: A Marathon with the Finish Line in Sight?
In his most optimistic outlook since declaring COVID-19 a public health emergency of international concern in January 2020, the World Health Organization’s Director-General, Tedros Adhanom Ghebreyesus, stated last week that “We are not there yet. But the end is in sight.”
The rollout of vaccines and therapies have undeniably helped curb deaths and hospitalization rates, but with protective measures being eased and over 1 million deaths this year alone, COVID-19 remains a cause for concern while governments explore how best to manage it going forward.
The COVID-19 Pandemic: A Marathon with the Finish Line in Sight?
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
It kind of feels like we are moving on. Mask orders are gone. Also proof of vaccination has completely disappeared. You know, it’s hard to hear that all of these things are ending and I still feel like we’re hearing about new infections. We’re entering the fall and we should expect a surge.
Steven Newmark 00:30
You’re listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:39
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:44
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes listen to all of GHLF’s great podcasts. We have so many to choose from!
Zoe Rothblatt 00:57
We sure do! And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Wellness Evolution. We know it’s a really stressful time with, you know, the end of summer, lots of changing guidelines, so definitely take a break and listen to how the hosts are practicing wellness.
Steven Newmark 01:16
Excellent.
Zoe Rothblatt 01:17
So let’s start with a listener comment. Ready, Steven?
Steven Newmark 01:20
I am ready.
Zoe Rothblatt 01:21
This one is from Claud P who wrote “Engaging hosts! Really enjoy this podcast!”
Steven Newmark 01:26
Thanks, Claud, we really enjoy putting on this podcast and we really appreciate your listening.
Zoe Rothblatt 01:31
We sure do enjoy it so much that we are back for season five. We’re so excited to keep the show going and talking to you all.
Steven Newmark 01:39
Yes, yes! Season five! And there is already a lot to talk about.
Zoe Rothblatt 01:43
That’s right, Steven. You know, as the COVID-19 pandemic lingers, many restrictions and protective measures have been relaxed quite a bit. But we know that health care professionals are still at the frontline of this and immunocompromised patients in our community are still at risk. So is it really behind us, what’s going on with the pandemic?
Steven Newmark 02:02
Well, we’ll talk about that in a few minutes. But first, let’s start with some news from the week. First up is the new boosters. The new boosters are here! The FDA has authorized two updated boosters, the bivalent COVID vaccine of Moderna and Pfizer. If you’re at least 12 years old, don’t have an active COVID infection, and it’s been at least two months since you’ve had a booster, you’re eligible for the new booster.
Zoe Rothblatt 02:24
Okay, big round of applause! This is exciting! I know many in our community are excited about it. Because you know, there’s been sort of a drag with getting vaccines and people may not have mounted a full response to the first vaccine and then to have new variants which that vaccine didn’t necessarily cover. This is really exciting because it covers that dominant strain of Omicron.
Steven Newmark 02:44
Yeah, I mean first of all, not only will the booster with the new vaccines decrease the likelihood of infection and severe illness, but it could also decrease the likelihood of developing long COVID.
Zoe Rothblatt 02:54
Yeah, which we know is a concern for our community who already lives with chronic illness, you don’t want to add another chronic condition on top of that. It is a lot to manage!
Steven Newmark 03:03
Right. Many folks in our community have already gotten their boosters, and some have reported getting that and the flu shot at the same time.
Zoe Rothblatt 03:09
Which is awesome. It’s always good to hear from people about their experiences. But as a reminder, you know, always talk to your doctor about getting the shot, and if you need to pause any regular medications to do so.
Steven Newmark 03:20
Now, obviously, having just listened to this, our listeners know all about the new vaccines. But there is some bad news. The boosters are getting very little fanfare. And you know, there’s a fear that too few people might get them. The CDC has said that a national survey found that 72% of respondents said they were likely to receive an updated booster but to actually get them vaccinated requires making the boosters easily accessible and making sure folks know that their benefits. So hopefully we’re continuing to get the word out and I would put forth on to our listeners: don’t just get a vaccine yourself, but make sure to spread the word about the new boosters.
Zoe Rothblatt 03:54
That’s a really good point! And you could also point people to this tool on the CDC website that calculates if you need a booster. You know, you put in your age, if you’re immunocompromised, you know, what vaccines you got in the primary series, if you’ve got a booster, and it lets you know if you are eligible for this vaccine. So that’s a really great tool for people who just simply don’t know the answer.
Steven Newmark 04:15
So more good news. The uninsured rate has approached a record low. Census numbers that were just released, show that 8.3% of Americans or roughly 27 million people did not have any health insurance in 2021. Well, that’s still, I would say unacceptable. It is an improvement from 2020 when 8.6% of Americans were uninsured.
Zoe Rothblatt 04:36
And this is a result of Medicaid, which is the public health insurance option for people with low incomes. And what’s really interesting is that Medicaid rates have increased because of the COVID Relief Bill that Congress passed in March of 2020. So I guess you could say, you know, there’s some good that’s come out of the pandemic because the Family First Coronavirus Response Act basically mandated that Medicaid programs not forcing enrollees to requalify for the program. So it just eliminated a lot of those extra steps like, you know, having to fill out more forms, realizing the plan year is ending, and you have to, you know, get together all your stuff and re-qualify, you just sort of rolled into the next year. So Medicaid enrollment has grown.
Steven Newmark 05:16
Yeah, um, you know, it’s important to advocate, talk to your elected officials about the importance of health insurance and how it helps you to stay healthy.
Zoe Rothblatt 05:23
Totally! And if you want to do so you could always join our 50-State Network. We’re a group of advocates, and we will help raise your voice to legislators and talk about issues that you care about. Okay, Stephen, I want to give a quick update on the methotrexate access issue. We haven’t talked about in a bit and it feels like it’s maybe died down a bit. I’m hearing less from our community about the issue and I guess less from the media too.
Steven Newmark 05:47
Well, let’s just remind our listeners what the methotrexate issue exactly is.
Zoe Rothblatt 05:52
Yeah, good call. So you know, after the overturn of Roe v. Wade, and some states with trigger laws, they called out methotrexate as a restricted drug, because it has this other use that it can be used for an abortion, but we know that many in our community take methotrexate for things like rheumatoid arthritis, to help control their arthritis, and avoid irreversible joint damage. Actually, methotrexate has been around for decades, it’s like one of the oldest drugs used. So you know, obviously, when they call this as a restricted drug, people started having access issues. And I wanted to share that I actually take methotrexate and I moved to Tennessee. I was a little bit worried based on the laws here, and I was able to successfully order it. So I want to tell our listeners, you know, my specialty pharmacy worked for me. And when I talked to others in our community about this, I learned that you know, it might be a problem at the local pharmacy, but this specialty pharmacy is a really good resource. So definitely, you know, talk to your doctor about what the best pharmacy is to work with when you’re ordering your medications.
Steven Newmark 06:51
Well, that’s great news! I’m glad to hear that the stories from our community seem to be dwindling in regard to this topic. That’s a good thing.
Zoe Rothblatt 06:58
Yes, me too, because no one should ever have to take extra steps to get their medication even if they are able to get it. If it takes more prior authorizations and verifications. It’s still delaying people, which just isn’t fair and leaves people in pain.
Steven Newmark 07:12
Absolutely.
Zoe Rothblatt 07:14
Okay, let’s go back to my original question, you know, are we still in a pandemic?
Steven Newmark 07:19
Ahhh- That’s a long winded way of saying: I’m not sure. I will say that precautions like masking and distancing are clearly not being enforced. But that said, healthcare professionals are still on the frontlines of the pandemic. And, you know, high risk patients are as well and folks are wondering if the country as a whole, the world as a whole, is moving on too quickly. Yeah, it kind of feels like we are moving on. Capacity limits are gone. When you go into places, I’m seeing that restaurants, sporting events, everything’s at full capacity. Yeah.
Zoe Rothblatt 07:55
Mask orders are gone. I just took a flight, I was one of two people in a mask. And also proof of vaccination has completely disappeared. There was a while where we had to show our vaccine card to get in restaurants. And you know, that’s gone, too.
Steven Newmark 08:10
Yeah, yeah, it’s true. We never have to show vaccinations anymore.
Zoe Rothblatt 08:13
And on top of that, you know, the CDC recently loosened their guidance on social distancing and quarantine. And, you know, the free government at home COVID-19 rapid test program ended earlier this month, which, you know, it’s hard to hear that all of these things are ending and I still feel like we’re hearing about new infections, BA.4 and 5 are swarming, we’re entering the fall here, and based on previous years, it feels like we should expect a surge.
Steven Newmark 08:42
Yeah. So let me ask you a question. What would be one positive that you would take from the last two and a half years? And also ask a second follow-up question on top of it. What is one thing you’re currently, September 2022, that you’re dispirited about, at this phase of the pandemic?
Zoe Rothblatt 09:00
One positive, I think people are more aware of, you know, staying home when you’re sick. I think before like a lot of people I remember used to show up to class with a runny nose and I would feel so upset because I’m like: “what are you doing here? You’re gonna get others sick” and now I think people know, you know, if you don’t feel well take a step back and stay home. It doesn’t have to be COVID. Like any illness, like really, you shouldn’t be spreading it because you don’t know who around you is high risk.
Steven Newmark 09:27
That’s a good one!
Zoe Rothblatt 09:28
And to answer your other question. What am I sort of feeling like dragged and upset about? I’m feeling upset that it feels like most people around me are talking about COVID as if it’s completely in the past, and I don’t know how you get people to realize it’s still going on. And I’m fatigued too. I’ll admit, I’ve become more relaxed with the mask, especially when no one around me is wearing one, it’s hard to keep it up. It’s exhausting. And you want to be social and protect your mental health but at the same time, it’s really hard to balance all that. And Steven, I’ll throw the question back to you. I’m curious to hear where you stand with all this.
Steven Newmark 09:28
I like what you said about being sick. Just a quick anecdote story, I was talking to a friend who works at a big fortune 500 company. And you know, the joke there about the sick policy was: there is no sick policy. There’s no such thing as calling in sick. But that has completely changed. So that goes to your point. But just so I don’t take the same answer as you. I think one of the things I do like is that it’s become somewhat acceptable to wear a mask in public. And I like that COVID aside, and like that for the flu season. On the flip side, where I am today, I think what I’m most frustrated is, I hear some variation on the phrase of: “oh, it’s like the flu. It’s like a cold. It’s like the flu. Now. COVID is just like the flu.” And it’s not, because the flu infects and kills a certain amount of people each year. But the amount of people that have died as a result of COVID just dwarfs anything that comes near the flu; it’s not the flu. I think conflating the two is problematic.
Zoe Rothblatt 10:57
And you know, the flu is still very serious. You know, we get our flu shots every year for a reason. We can’t just say: “Oh, it’s just the flu.”
Steven Newmark 11:04
Right? Who wants a second flu out there?
Zoe Rothblatt 11:06
Yeah. And you know, with the flu, we know that it’s seasonal. There’s, I guess a time of year where we could sort of take a break from it. With COVID, we haven’t had that luxury. It’s been nonstop, right? So you know, where do we stand with vaccines, one of our best tools when it comes to COVID? I was looking at some numbers, only 67% of the US population are considered fully vaccinated, and only 32% have received a booster. So when you think about that, like what even is fully vaccinated anymore? If you got your first series in 2021, we’re nearing 2023. Is that still protective? You know, is the number of people protected really at 32%? So we’ll see what happens with this new booster. But you know, there’s still a lot of misinformation out there. And I guess vaccine fatigue is something I’ve been thinking about recently, you know, experts are saying we’re going to need a flu shot and COVID shot every year. And it’s a lot! So I think it will be easier as time goes on, and we get more defined time periods to get the vaccine, like we know, annually get your flu shot. With COVID, it’s been sort of a peek into the news and figure out when you need it. And that’s a little fatiguing. But once we get on a rhythm with it, I think it’ll be, you know, helpful and more understandable.
Steven Newmark 12:02
Right Yeah, that’s a good point. There’s a timing element, you know, we discussed the tool on the CDC’s website. If you contracted COVID, how long has it been? You have to plug in different permutations to figure it out. You know, it’s early September, I have an appointment to get my vaccine. I haven’t gotten it yet. And part of what I’m waiting for, my appointment is in early October, I kind of want to get a little more separation since I contracted the illness. I’m also like, have the mindset, you know, should I wait until there’s a particular moment, a particular event that I’m going to be at, Thanksgiving perhaps.
Zoe Rothblatt 12:56
Right, with the holidays, what will those look like this year?
Steven Newmark 12:59
Right. So do I want to wait to get the vaccine, let’s say two weeks before then so I have peak immunity for something like that? It’s such a tricky thing.
Zoe Rothblatt 13:06
It’s so tricky. And something else I want to mention here, that I was reading comments from people in our community, is that many feel unsafe to even go get the booster because in some pharmacies, people aren’t wearing a mask. So it feels risky, you know, to go in and the person administering the vaccine may not be in a mask, and you’re trying to get this protection, but you also could be putting yourself at risk at the same time and I think these little nuances that feel so obvious to our community aren’t coming through in the general public. And that’s where we feel left behind.
Steven Newmark 13:37
Absolutely. So given all this, I guess it feels like the pandemic is still ongoing in some twisted way. And we will keep you at the ear, of course on The Health Advocates.
Zoe Rothblatt 13:46
Yeah, I would say so. I’m going yeah, we pointed to a lot of things. You pointed to the impact on health care, immunocompromised, long COVID, the vaccine conversation. Different restrictions are still being talked about whether they’re removed or here they’re being talked about. Given all that, to me, it feels like the pandemic is going on. And then you’re like, am I in a different world than everyone else? But you add up all these points. And yeah, it’s still going on.
Steven Newmark 13:46
Yeah you know who said this really well is the Executive Director of the World Health Organization.
Dr Tedros Adhanom Ghebreyesus 13:51
“We have never been in a better position to end the pandemic. We’re not there yet. But the end is in sight. A marathon runner does not stop when the finish line comes into view. She runs harder with all the energy she has left. So must we! We can see the finish line. We are in a winning position. But now is the worst time to stop running. Now is the time to run harder and make sure we cross the line and reap the rewards of all our hard work.
Zoe Rothblatt 14:51
Okay Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 14:55
Well, I learned from you about the CDC’s tool. I actually had.. I was not familiar with that, but I’m excited to start plugging it in. And maybe then I will actually figure out when to get my booster.
Zoe Rothblatt 15:05
And I learned from you about how the uninsured rates decrease as a result of Medicaid expansion during COVID.
Steven Newmark 15:13
Well, we hope that you learned something too. We’d love to hear from you. Email thehealthadvocat[email protected]. Or better yet, include a short video or audio clip.
Zoe Rothblatt 15:21
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 15:27
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:32
Well, everyone thanks for listening to The Health Advocates a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts. And definitely hit that subscribe button wherever you listen and share this podcast with your family and friends. It’ll help more people like you, find us. I’m Zoe Rothblatt.
Steven Newmark 15:53
I’m Steven Newmark. We’ll see you next time.
Narrator 15:58
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
S4, Ep 13- Project Wheelchair Runway
Disability representation in the fashion industry has a long history with rheumatoid arthritis designer Michael Kuluva who has championed this issue for years. Kuluva designs accessible clothing, raises awareness for chronic illness through fashion and features advocates like Kelly Boyd as models in his Tumbler and Tipsy show. Now, we meet Kellie Cusack who lives with spinal muscular atrophy, and will be featured in a fashion show, as she “rolls down the runway” at New York Fashion Week on September 8th”
“Fashion really does play a role in your health,” says Zoe Rothblatt, Associate Director, Community Outreach at Global Healthy Living Foundation. “The physical and mental health is so tied together; you want to feel good in what you’re wearing when you’re already feeling so bad about living in pain. It really does make a difference to look good and feel good, as they say.”
S4, Ep 13- Project Wheelchair Runway
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
Fashion really does play a role in your health. The physical and mental health is so tied together, you want to feel good in what you’re wearing when you’re already feeling so bad about living in pain. It really does make a difference to look good and feel good as they say.
Steven Newmark 00:26
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:36
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:41
Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from.
Zoe Rothblatt 00:55
We sure do. And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Healthcare Matters, hosted by our colleagues, Robert Popovian and Conner Mertens. They do a deeper dive on policy issues and season three is coming soon. So definitely get caught up on season two.
Steven Newmark 01:15
I call Robert and Conner the smart guys because they seem to know it all when it comes to health policy matters. So definitely check it out.
Zoe Rothblatt 01:22
Let’s start with the listener comment. Are you ready?
Steven Newmark 01:24
Let’s do that.
Zoe Rothblatt 01:25
Okay, this one is from Nick P who wrote, “Great podcast with timely topics.” Steven, this week we have a special guest interview and I’m really excited for you to hear it. I spoke with LGBTQ advocate Kellie Cusack, who on September 8th, she’ll roll in a first of its kind runway show preceding New York Fashion Week.
Steven Newmark 01:45
What do you mean? What do you mean roll?
Zoe Rothblatt 01:47
So Kellie lives with spinal muscular atrophy and uses a wheelchair so she will be taking part of the show called Double Take, which is a fashion show aimed at increasing disability visibility and break down stereotypes around fashion. So to really showcase adaptive fashion, Kellie and other people living with disabilities will be participating in the show.
Steven Newmark 02:09
Oh, sounds exciting.
Zoe Rothblatt 02:10
Yeah, it’s really exciting. And she came on to speak to me about her condition and for her hopes about what people will learn from this fashion show.
Steven Newmark 02:19
Excellent. Well, I can’t wait to listen.
Zoe Rothblatt 02:20
As we always do, we have a few news updates before we hear the interview.
Steven Newmark 02:24
Well, we had another LGBTQ advocate Kellie Cusack, who on September 8th, she’ll roll in a first of its kind runway show preceding New York Fashion Week. we asked our community what our folks think about the new CDC guidelines and what their plans are now.
Zoe Rothblatt 02:34
Surprisingly, 95% of the people that answered, and as a reminder these are people living with chronic illness, so they had not heard about the latest CDC COVID guidance before our poll came out.
Steven Newmark 02:46
70% said they feel unsafe due to the less restrictive guidance and 27% said they feel the same.
Zoe Rothblatt 02:55
About half of respondents from the poll said they’ll continue going out in public the same amount. And the other half said they’ll go out less often. In the free response section, it became clear that people who are going out the same amount are still following the traditional COVID safety precautions like masking, social distancing, and hand washing.
Steven Newmark 03:12
I definitely get the sense that the number of mask wearers is really dipping, almost falling off a cliff. Anecdotal, this is not a poll, but New York City public transit where it’s technically still required, my gut is it’s down to about 15%. Whereas at the beginning of the summer, I felt it was well north of 50%.
Zoe Rothblatt 03:33
Here in Nashville, Tennessee, it seems like I’m one of the only ones wearing a mask. By the way, in the free response section of the poll, many, many people highlighted how a mask would just make them feel so much more safe.
Steven Newmark 03:45
I continue to wear my mask, and I have to be completely honest about it. I do feel like a big reason I wear the mask is less for personal protection at this point and more to make it as socially acceptable as possible to continue wearing masks.
Zoe Rothblatt 03:58
I don’t think you need a reason. It feels good. When I see somebody else with a mask, it’s almost like we have a little wink at each other like, “Oh, yeah, you too. Awesome.”
Steven Newmark 04:07
That’s true. And as I said many times, it’s not just COVID. I don’t want to get the flu, I don’t want to get heck, I don’t even want to get a cold if I can avoid it.
Zoe Rothblatt 04:14
Especially when you have chronic illness, like any little ailment, it’s not exaggerating, when you say it really does have an impact. I live with arthritis and Crohn’s and if I even have a little cold, I feel it in my gut, I feel it in my joints. It’s an all over really bad feeling. And then sometimes you have to pause your medication so then your chronic illness acts up, it takes you for a loop. Our next piece of news, there was a new study published and it was about support and needs in the workplace for chronic illness. So let’s go through some of the results and then talk about what people can do. The study was published in Arthritis Care and Research. It actually focused on Canadian rheumatic disease patients between the ages of 18 and 35. So what they wanted to do was learn more about how telling a supervisor about a rheumatic disease might impact the level of workplace support. Interesting question.
Steven Newmark 05:07
So what did they find?
Zoe Rothblatt 05:08
So they found that 70% of young adults told their immediate supervisor about their condition, which I was surprised. Working in a health care organization, I feel more comfortable to talk about my chronic illness, on the podcast with you and at work in general, but interesting when we work at a place where people understand and we’re working with patients all the time, so there’s like a natural way to bring it up. I was surprised for the people who don’t, it must be really challenging to do so.
Steven Newmark 05:36
I think similarly to the 70% of young adults, I was more inclined to tell my immediate supervisor but not go beyond that.
Zoe Rothblatt 05:44
Right.
Steven Newmark 05:44
First of all, I had to go get infusions. And that requires a lot of time away from the office. So I felt I had to say something. It would have been awkward for me to not say something.
Zoe Rothblatt 05:55
Yeah, here’s what else the survey found. They measured presenteeism, which is the concept of showing up for work but not being productive. I think we’ve all found ourselves there, chronic illness or not. And they found that presenteeism was high, especially when workplace supports needs were not met. And the opposite was true to so that when the supervisor and organization met the needs of the employee, presenteeism was lower.
Steven Newmark 06:23
It’s a different feeling when you feel as if you and your work product is valued versus your body being present in a certain place is is the value.
Zoe Rothblatt 06:31
So here are some of the most wished for workplace supports. Number one, a flexible work schedule.
Steven Newmark 06:38
Yeah.
Zoe Rothblatt 06:38
Two, prescription drug coverage. Three, extended health benefits. Four, paid sick leave. Five, modified job duties. And six, an ergonomic and accessible workstation. As advocates, what can you do if you find yourself in a situation where you know you’re at work and you need some of these things and don’t know what to do?
Steven Newmark 06:57
I think it’s important to remind everyone to advocate for yourself in the workplace. If you don’t feel comfortable talking to your supervisor, talk to someone perhaps in your human resources department and ask for the company’s disability plan and insurance policy. And of course, know your rights. There is the Family Medical Leave Act, FMLA. That allows you to take up to 12 weeks a year for medical emergencies, and the Americans with Disabilities Act, which requires employers to make reasonable accommodations for disabled workers.
Zoe Rothblatt 07:24
All great reminders. Thank you for that. I think it’s important to remember that advocacy can mean talking to your legislators, but it can just mean you know, sticking up for yourself in everyday life and getting your basic needs met.
Steven Newmark 07:35
When you’re standing up for yourself, you’re also standing up for others. Because the more you normalize, what it is to have a chronic condition and the more you show that as a member of the chronically ill community, you’re still a productive member of the workforce. The more folks that see that, the more you’re actually helping others.
Zoe Rothblatt 07:53
Amen, well said.
Steven Newmark 07:55
In other news, Texas has confirmed the first US death of an individual who had monkeypox. It’s not yet known whether the individual died from monkeypox, but what we do know is that the patient was severely immunocompromised.
Zoe Rothblatt 08:09
When I saw this headline, I got nervous because, you know, we know our community is at high risk for a variety of illnesses. And this was the first death publicly reported by health authorities during this current monkeypox outbreak. So I think what you said is true, it’s too soon to know if it was monkeypox. We’re waiting for autopsy results. And instead of being scared, we have to figure out you know, what can we do in the meantime? What can we do to stay safe? And I think it goes back to what we always talk about, you know, make a plan.
Steven Newmark 08:39
Always talk to your doctor. Don’t be scared, but there are scary things out there.
Zoe Rothblatt 08:39
Yeah.
Steven Newmark 08:39
But talk to your doctor to help navigate the world.
Zoe Rothblatt 08:41
Sometimes headlines are put in a way to make it sound scary. So take it with a grain of salt and know that you have a community here with us and we’ll continue putting out information on monkeypox and what you need to know. Well, Steven, and our listeners, have you ever wondered what it’s like to be in a fashion show that’s focused on people with disabilities? Well the good news is that disability representation in the fashion industry has a long history with rheumatoid arthritis designer Michael Kuluva. He’s championed this issue for years, actually. Kuluva designs accessible clothing, raises awareness for chronic illness through fashion, and features patient advocates, like Kelly Boyd, as models in his New York Fashion Week Tumbler and Tipsy shows. Now we meet Kellie Cusack, who lives with spinal muscular atrophy and will be featured in a fashion show as she rolls down the runway at New York Fashion Week on September 8th. Let’s press play on this interview and learn more from Kellie about how she advocates for the disability community and increases awareness of adaptive fashion. Welcome, Kellie.
Kellie Cusack 09:41
Hi, thank you for having me.
Zoe Rothblatt 09:43
Of course. Tell us a little bit about your story and what it’s like living with SMA.
Kellie Cusack 09:48
Yeah, sure. So I’m Kellie, I’m 23 and I have SMA type 2. For me, that means you can see I have a wheelchair, and I love being in my wheelchair you know. Living with SMA definitely isn’t easy but I’m so grateful for my community and people and friendships and make it worthwhile.
Zoe Rothblatt 10:09
So tell us about the community, how did you become an advocate and start sharing your story and connecting with the community?
10:17
I started doing fundraisers with my mom and a bunch of my middle school friends when I was around 10 years old. And ever since then, I’ve just been really involved. I can’t remember exactly what year but my mom and I became co chairs for the New Jersey chapter of Cure SMA. And we’ve been doing so many amazing things since then. And the conference has really helped me find my community, find the people just, I don’t know, feel better about my disease when it’s really hard and have hard days.
Zoe Rothblatt 10:49
For sure, having a community is so special. Just that feeling of when you know someone gets it on some level and can connect with you. It definitely inspires me to share my story when I’m talking with people that get it. You mentioned you’ve done some stuff over the years. Is there like an event or a day that that stands out to you?
11:09
Oh, there’s so many that I love so much. I love the bake sales we did, and we did something called the Bowl-A-Thon where we partnered with a local bowling alley. And all the fundraiser money went toward Cure SMA, and it was so much fun. We had pizza, all kinds of different foods and everyone just had a great time.
Zoe Rothblatt 11:29
I think it’s so great to have fun while you’re doing important work. We’re really here today to talk about this upcoming fashion show. Tell me about the show that you’re taking part of, it’s coming up proceeding New York Fashion Week.
11:42
Yeah. So it’s called Double Take. And basically, the whole concept is that it’s all about disability representation and advocacy, and also the SMA community, and just finally representation in that because we turn through life, it’s hard to find things that are fashionable for us. I know for me personally, and a lot of my other friends we shop in kids clothes in kid’s sizes, sizing, and it’s hard to be inclusive and accessible that way. This show tied to us in the community, and I’m so excited.
Zoe Rothblatt 12:15
And how did you get connected with the show?
12:17
James is music video spaces I saw online. And I just loved it so much. I posted about it online, and then someone from his team reached out to me and said, “Hey, we how much you love his project. We’re gonna do something similar. Would you like to be involved?” And I was like, absolutely. Yeah, that sounds like so much fun.
Zoe Rothblatt 12:40
The show aims to increase disability visibility, break down stereotypes, and really focus on adaptive fashion. What does this mean to you? And what kinds of changes would you like to see in fashion?
12:53
For me, personally, I feel like price points for me, I feel I need to change, it’s just not accessible enough, if that makes sense. So for me in the future, I just hope that it will be more affordable and just easier to get access to.
Zoe Rothblatt 13:09
There’s so much that goes into caring for your health. And I think people just think of it as between you and the doctor. But it’s actually so much more than that. And fashion really does play a role in your health and the physical and mental health is so tied together. You want to feel good in what you’re wearing when you’re already feeling so bad about you know, living in pain or whatever it is. It really does make a difference to look good and feel good as they say,
13:35
Yeah, definitely I think in my head a lot, sometimes about like what’s going on in SMA. So an outfit really changes my perspective. And just gets me out of that, makes me feel so much better.
Zoe Rothblatt 13:48
Me too. I’m with you. An outfit can turn around my day. When others see this show, what do you hope that they’ll learn and take away from it?
13:56
I hope people see us for who we are, that we’re human. And just to see the disability community in a different light and just know how powerful that is, that representation and how important it is for sure.
Zoe Rothblatt 14:09
I think that’s such a good point about you know, seeing disability people in a different light. We can participate in society like everybody else and have fun and be beautiful and be showcased in a fashion show. And I think it’s so amazing that something like New York Fashion Week, which is so big, that we’re able to be part of it. So thank you for all that you do.
14:33
Thank you so much! It’s so much fun. When they said Fashion Week and like what okay.
Zoe Rothblatt 14:38
It’s so cool. Do you have your outfit picked out?
14:40
I can’t say much about it. Yeah, I have my outfit picked out. I’m so excited!
Zoe Rothblatt 14:45
What is your advice for other people out there looking to raise their voice and just don’t really know how to get started?
14:52
Honestly, just get involved, locally. Whatever disease you have or disability, whatever you may have, like look online. All these different organizations, just see how you can get involved. I feel like everybody has a different chapter of organizations for advice. And you never know or even just you can ask for people and say, “I have this, you know, what resources do you use?” That’s really helped me to be more out there.
Zoe Rothblatt 15:20
Well, speaking of getting involved in finding your community, how can our listeners find you and stay in touch with you?
15:26
So I haven’t blogged for thewildwarrior.wordpress.com. And my Instagram, which is #kellielynne99.
Zoe Rothblatt 15:40
Awesome. Well, thank you so much, Kellie, for sharing your story with us and our listeners, and we’re excited to see you in the fashion show.
15:47
Thank you for everything, Zoe! I really apprecaite it.
Zoe Rothblatt 15:52
Thank you to Kellie for sharing with us and our listeners, we hope that the fashion show goes really great. If you’re interested in seeing Kellie roll the runway and other disability advocates as well, we put a link to the fashion show in our show notes. So definitely check it out. I encourage you to watch it on September 8th. That brings us to the close of our show. Steven, what did you learn today?
Steven Newmark 16:13
Well, I learned from our discussion, the term presenteeism. I’m guessing it’s a new term because I had not heard it before. And I learned that it’s the idea of when you’re at work and physically present, but not altogether working too hard.
Zoe Rothblatt 16:26
And going off of that, I learned well as a reminder about the importance of knowing your rights in the workplace.
Steven Newmark 16:32
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories. Send your email to thehealthadvocat[email protected]. Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:45
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:52
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 16:57
Well, everyone thanks for listening to The health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts. And definitely hit that subscribe button wherever you listen so you never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 17:15
I’m Steven Newmark. We’ll see you next time.
Narrator 17:20
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 12- Fauci, the CDC, and Confidence in Public Health
Trust in public health officials is on a steep decline, so it’s no coincidence the Centers for Disease Control and Prevention is ordering an overhaul of its operations. It comes at a time when Dr. Anthony Fauci, Chief Medical Advisor to seven Presidents, has decided to step down at the end of the year.
“When the pandemic hit, I think we all had to immediately become public health experts and a lot got lost there,” says Zoe Rothblatt, Associate Director, Community Outreach at Global Healthy Living Foundation. “So maybe now’s the time to step back and learn a little bit about how it works.”
S4, Ep 12- Fauci, the CDC, and Confidence in Public Health
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
When the pandemic hit, I think we all had to immediately become public health experts and a lot got lost there. So maybe now’s the time to step back and learn a little bit about how it works.
Steven Newmark 00:21
Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:31
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:35
Our goal is to help you understand what’s happening in the healthcare world to make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:48
We sure do, and you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Talking Head Pain hosted by Joe Coe. In one of the latest episodes, Joe chats with Dr. Leroux about starting migraine associations in Canada.
Steven Newmark 01:04
Great.
Zoe Rothblatt 01:05
Let’s start with a listener comment. Are you ready, Steven?
Steven Newmark 01:07
I am ready.
Zoe Rothblatt 01:08
This one is from Sammy S, who wrote, “I look forward to this weekly. So happy I found this podcast.”
Steven Newmark 01:14
Well, thanks, Sammy S. This week in the news, there was a final rule issued on how surprise bill disputes will be settled. Early on in the year we talked about the No Surprises Act, now a federal law, that protects patients from out of network medical bills when they seek care in network facilities.
Zoe Rothblatt 01:32
What this means basically is that now the surprise billing arbitration rules have been finalized. And this is just about how billing disputes are settled. Because you know, there still is a bill and although the patients are responsible, it has to be handled in some way. So you know, if you’re seeing this as someone that lives with chronic illness, don’t worry, your protections still remain the same under the act.
Steven Newmark 01:54
This rule is just about how the bill gets paid and which factors are considered for claim disputes. The final rule says that arbitrators charged with settling disagreements between out of network providers and insurance companies must first take into account the medium in network payment rate for service but also consider other factors including providers training and experience, the market share of a medical facility or insurance plan in that geographic area, how many services the provider offers and whether it is a teaching facility, for example.
Zoe Rothblatt 02:23
That is a lot of things to consider, and I’m glad it happens on the back end and patients can get the care that they need.
Steven Newmark 02:31
In bigger news, or more interesting news for our listeners, Pfizer has announced that they’ve asked the FDA to authorize an updated version of their COVID vaccine.
Zoe Rothblatt 02:40
So this is the one that’s specifically designed to target the Omicron subvariants that are now dominant in the US while also containing the original Coronavirus strain, right?
Steven Newmark 02:51
Correct. They’ve submitted their preclinical data on vaccine efficacy to the FDA. And this is a new booster that will target both the original Coronavirus strain, as well as the BA.4 and BA.5 Omicron subvariants.
Zoe Rothblatt 03:04
I think that if the vaccines authorized by the FDA-
Steven Newmark 03:08
Oh, is Macintosh vaccinated? He wants his vaccine I know.
Macintosh 03:08
Bark!
Zoe Rothblatt 03:11
Yes, he is almost due for his yearly boosters.
Steven Newmark 03:15
There you go.
Zoe Rothblatt 03:16
He’s ready. If this vaccine is authorized by the FDA distribution could start immediately which would time really well with potential Fall and Winter surges as we’ve seen with a pattern over the last couple of years that cases continue to rise. And this could get ahead of a new variant if it’s approved so quickly. One important thing to note about this news update is that the data that they submitted is a little bit different than what was used in earlier vaccine’s authorizations. So instead of waiting for the test results from human trials, the FDA just asked the drug companies to initially submit the results of tests on mice. And they’ll look at those results while the human trials are starting this month. Basically, they’re relying on those results, along with the human neutralizing antibody data from the earlier BA.1 bivalent booster studies because they had done vaccine studies on the earlier variants and they said we’ll make it more updated for BA.4 and 5. So there are still studies to look at. Our last piece of news is that Dr. Fauci announced he’ll be stepping down later this year.
Lester Holt 04:21
After 38 years as director of the National Institute of Allergy and Infectious Diseases, Fauci says he’s leaving that position as well as his role as President Biden’s top medical adviser in December.
Steven Newmark 04:34
To lead any institution for that long is really just incredible. That’s a testament in and of itself. He has advised seven US presidents starting with Ronald Reagan through the HIV AIDS epidemic, West Nile virus, the 2001 anthrax attacks, various bird influenza threats, Ebola, Zika, and of course COVID. And now monkeypox.
Zoe Rothblatt 04:54
By the way, when he made this announcement, he said, you know, I’m gonna focus on the next stage of my career. It is isn’t like okay, I’m gonna go sit on a beach somewhere. He’s ready and excited to do more.
Steven Newmark 05:05
Boy, at 81 years old, I hope that I’m having a next phase of my career.
Zoe Rothblatt 05:09
And me too. And of course, you know, many of us have become familiar with Dr. Fauci in COVID, he stepped into the spotlight, so to speak, and 2020 as you know, the face of the pandemic response.
Steven Newmark 05:21
Think back to how stressed we were in that time. And I know there’s still a lot of stress, especially for our community. But back then, when we were really hunkered down at home, and you sort of want something to be mad at, and you can’t totally be mad at a virus. And then there was this figure Dr. Fauci who stepped in, I think a lot of people directed anger towards him, which isn’t fair because public health isn’t political. It’s about protecting the health of the community. We’re making the decisions for the health of the community, and sometimes those decisions can counteract your personal opinion. It’s interesting, some of the news reports, referred to Dr. Fauci almost as controversial, which is, so if I may say, just unfair. The job of being the face of public health when dealing with a pandemic is so difficult trying to thread that needle between placing fear, the appropriate amount of fear, in the public’s view so that they take action, but not overwhelmingly fill them with fear. And you’re never going to make everyone happy. In some instances, you’re going to really make people upset. And in the age of social media, it’s easy to get people riled up. It’s unfortunate that there was so much negative blowback to someone who has worked so hard in his