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RealTalk MS
Episode 446: MS Advocacy and the National MS Society's Public Policy Conference with Steffany Stern
00:34:23
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- [00:01]
A
I'm john strum, and this is real talk, mississippi. It's March 17, and we have a lot to talk about. And right around this time of year, I like to remind everyone that the things people affected by Ms. Want most access to quality, affordable health care, access to telehealth, access to affordable prescription medications, and research that leads to cures. All of these things are public policy issues. Every one of them is determined by our state and federal elected representatives. Next week, 175 Ms. Activists will gather in Washington, D.C. to participate in the National Ms. Society's Public Policy Conference and to take the issues that matter most to people affected by Ms. To Capitol Hill. When it comes to the legislative vibe in our nation's capital, it's no secret that these are unusual times. And joining me today to brief us on our ongoing advocacy efforts, as well as give us a sneak peek at the specific legislative issues we'll be taking to Capitol Hill, is the National Ms. Society's Vice President of Advocacy, Stephanie Stern. But before we get to my conversation with Stephanie, there are a few other things that you should know about. Here in Los Angeles. We're less than two weeks away from Walk Ms. I'm participating this year and I'm asking for your support. This podcast is all about people in the Ms. Community who are making a difference, and today it's your turn to be a difference maker. If you find value listening to this podcast and it's something you can financially manage, I hope you'll take a minute to visit realtalkms.com walk Ms. And make a donation in any amount. You'll find that link in today's show. Notes the Genes and Environment in Multiple Sclerosis, or gems, study is focused on understanding the risk of someone developing Ms. If they have a close relative who's living with Ms. In 2015, the researchers on this project published their findings on 2632 people without Ms. Who had a close family member with Ms. After obtaining DNA from saliva samples and using a questionnaire to gather medical history, family history, and environmental exposures, the research team was able to calculate a genetic and environmental risk score for each person in the study. The study Results, published in 2015, showed that the risk of developing Ms. For these close relatives was 30 times higher than that of the general population. And just as a quick reminder, the risk of developing Ms. In the general population is less than 1%. Now, the research team has published updated findings on just over 1900 of the original 2000, 632 participants. This group has completed seven surveys since joining the study in 2011 and within this group, the risk of developing Ms. Increased and was found to be 100 times that very low risk in the general population. Ending Ms. Through prevention is part of the Pathways to Cures research roadmap. And if you'd like to learn more about the newly launched global effort aimed at Ms. Prevention, you might want to listen to my conversation with Dr. Bruce Bebo, the Ms. Society's Chief Research and Medical Affairs Officer. You'll find that conversation in Real Talk Ms. Episode number 439 and you'll find a link to that episode along with a link to the updated GEM study in today's Show Notes. By the way, the GEM study is currently recruiting participants who live in the New York area. If you'd like to learn more about participating in this study, you'll also find that link in today's Show Notes. Over the past few months, as clinical trials have gotten underway, CAR T cell therapy for Ms. Has been in the news. In CAR T cell therapies, a type of immune cell called T cells are collected from an individual and re engineered to seek and destroy a specific protein. In treating ms, the proteins being targeted live on the surface of B cells in the immune system. Once a patient's T cells have been programmed for their seek and destroy mission, they're infused back into the patient's bloodstream so they can attack and destroy those B cells. The idea behind all this is that once all the B cells have been destroyed, the immune system will reset, much like it does in hematopoietic stem cell therapy or hsct. And the strategy behind these treatments is that once the immune system resets, it no longer mistakenly attacks the central nervous system as occurs in multiple sclerosis. Last year I told you about a specific CAR T cell therapy for Ms. Called Azercell for from TG Therapeutics. This therapy is a little bit different in that it doesn't use the patient's own T cells. Instead, T cells are collected from other donors, providing a more consistent supply of this off the shelf therapy, making Azure Cel more accessible. We're talking about Azure Cel today because TG Therapeutics is now recruiting participants for a phase one clinical trial designed to test the safety and clinical activity of Azure Cel in people with primary progressive Ms. And secondary progressive Ms. This trial will test several different doses of Azure Cel given as a one time infusion and the main goal is to determine the optimal dose for use in future clinical trials. This phase one trial should conclude in 2029, but TG Therapeutics expects to have top line results later this year, and we'll be sure to share those results as they become available. If you're interested in checking out the enrollment criteria, locations where the study will be taking place, or stepping up to participate in the study, you'll find that link in today's show. Notes Here's a fun fact about Ms. Therapies Every one of the disease modifying therapies approved for Ms. Has benefited from research undertaken by the National Institutes of Health. That's why part of Ms. Advocacy is ensuring that the NIH is fully funded. It's just one of the issues we'll be discussing next week at the National Ms. Society's Public Policy Conference. Joining me in a moment to bring us up to speed on advocacy and the specific issues that will be taken to Capitol Hill this year is the Ms. Society's Vice President of Advocacy, Stephanie Stern. Next week, 175 Ms. Activists will gather in Washington, D.C. for the National Ms. Society's Public Policy Conference. Joining me to talk about the Society's advocacy work and what we can expect at this year's Public Policy Conference is the Ms. Society's Vice President of Advocacy, Stephanie Stern. Welcome back to the podcast, Stephanie.
- [07:50]
B
So glad to be here with you today, John. Thanks for having me.
- [07:53]
A
You know, it's been an interesting year for the Ms. Community. We've seen the healthcare safety net take a massive hit, making access to health care more difficult. There have been massive layoffs at the FDA and cdc. We've seen the Ms. Research program at the Department of Defense get defunded and just recently funded. Again, how would you describe the vibe in Washington, D.C. this year compared to years past?
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B
That is a great question. And you know, one thing you should know about me, and you do know this because we've worked together for years, is that I am an optimist. And part of the reason why I am an optimist is because I believe so strongly in the power of advocacy. You know, we've had a year of ups and downs, some real extreme ups and downs. And there were lots of times, looking back on this year, where it felt like the work we had been doing, the priorities we cared about, were being eroded and undermined or even attacked. But I am here to say you can clearly see the power and the impact of all the advocacy work we did this year. As you mentioned, last year saw Congress making big changes to our healthcare landscape. They passed HR1 or one big beautiful bill that will have an impact on access and affordability of healthcare for Many years to come. Last March, they zeroed out the Ms. Research Program for the first time since its inception. In 2009, there was a proposal to cut funding for the National Institutes of health by 40%. I could go on and on, but we managed to remain persistent. This is something that I'm so impressed with. Ms. Activists across the country, they just never quit. It is so inspiring. We fought all year. We made our calls, we made. We did our visits with our legislators, we sent emails, we talked to the press, we did social media. We did every. Everything possible. And, you know, in January, Congress passed a massive spending bill that included four of our priorities. I don't think I would have. If you, if you talked to me this time last year, I don't think I would have predicted it. Right. But the minibus, the appropriations bill that they passed in January, they restored 3/4 of the funding for the Ms. Research program. $15 million out of the $20 million we used to get. That's an incredible accomplishment right there because, you know, every dollar that we, that we gain for federal funding for research in this environment is exceptionally valuable. They, they not only funded the National Institutes of Health, they included in that, in that bill some language to protect the National Institutes of Health, allow it to do its work, get the funding out the door. They passed pharmacy benefit manager reform, some of the transparency and affordability reforms we've been asking them to do for what, four years, five years, I can't even count anymore. I thought that those PBM reforms were never going to pass in this Congress, but we saw some pretty significant gains. And they extended telehealth access for Medicare beneficiaries. So none of that would have been possible without the work of Ms. Activists and our coalition partners. And I feel we can go in to our public Policy Conference, return to Washington knowing that we made a difference.
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A
I'm going to dive into some of the things you just listed because I think they're remarkable achievements. I think they're so important, especially in the current climate. And one of the things you just mentioned, one of the biggest wins for people affected by Ms. In this Congress was the restoration of $15 million for the Ms. Research program. Can you pull back the curtain on how activists made that happen after the funding was eliminated just last year?
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B
It started last year at our Public Policy Conference. So we did, you know, hundreds of visits with the Hill, and it was just right after, in the immediate aftermath of when the Congress had passed a continuing resolution that unfunded the Ms. Research Program. So Ms. Activists took to The Hill. And they brought back to us intel from their meetings about how this happened and how we could prevent it from happening in the future, because that's what we really needed to understand so we don't ever have to face this again. We built on the momentum from those meetings. We spent many months connecting with Capitol Hill leaders and really trying to understand what do we need to do? What was the key strategy to get our funding secured in the coming year and to, you know, make sure that funding is protected for years to come. What we learned from our, from these Ms. Activists and from our meetings is, you know, there's been a shift, I would say, in how Congress has decided to direct funding for the congressionally directed medical research program. Our congressional appropriators have told us that they're now going to make decisions year to year about which programs get funded. So, you know, we never took that funding for granted. We always fought for it, we always advocated for it, and we never thought there was a lot of certainty, but there's way less certainty now than there has been in the past. Every year we will have to make the case to Congress about why we should get funded in the congressionally directed medical research program. So that was a key breakthrough. To understand that. We also now understand you have to have bipartisan support, both a strong Democrat and a strong Republican making their case for your program. You have to have someone for whom this is a really top priority, someone who is willing to be a champion. And that is why I'm so excited about what we're doing at this public policy conference. In this type of environment, every meeting matters. Every member of Congress could potentially be that champion. Right? We've worked hard this year to shore up our champions. We know that appropriators, when they're making decisions about fiscal year 26, they there we know who went to the map for us and negotiated in that process to get that Ms. Research program funding back for fiscal year 27. We've got to figure out who are going to be our people. So every meeting we're going to have, we're really going to ask people to take good notes this year. Let us know where there was interest from an office, let us know where there was passion, take down notes about if there was a connection to Ms. From the staff or the member. We are building up a. An incredible, we're trying to build an incredible roster of champions on Capitol Hill. And the Ms. Activists are the best way to figure out who should be on that list.
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A
The Society has been advocating for pharmacy benefit Manager reform over the past four or five years. As you had said, with the new transparency and compensation reforms in the fiscal year 2026 package. What does this actually mean for someone sitting at their kitchen table worried about the affordability of their disease modifying therapy?
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B
That's a great question. So I will say the pharmacy benefit manager reforms, I say PBM reforms for short. The PBM reforms that were included in, in this spending bill are an important first step towards ensuring greater transparency around how do these middlemen, what is their business like, what are their practices, how do they implement barriers to getting access to the medications that people need, including high price specialty medications such as the Ms. Disease modifying therapies. We need to better understand how they work so we can come up with the right solutions to reform their practices. We are all. There's also some provisions that would address the amount of savings that they pass along to consumers. The, the saving that they negotiate for with the drug companies. That said, we know this is not the, the solution has not been arrived at yet. We have a lot more work to do. Pharmacy benefit managers are always evolving their practices, always coming up with something new. And we know that people will continue, have to continue having to jump through hoops to get their medications. There's going to be out of pocket costs will still be unaffordable. We are still going to work in the coming months and years to ensure that there are PBM reforms that address every single type of insurance, private coverage, Medicare, Medicaid and really result in significant savings when it comes to out of pocket costs for people living with Ms. But this is a great, these are some, there's some strong provisions in there, stronger than I think I even anticipated. They, they apply to different segments of the insurance market. So for example, some applied only to private coverage, some apply only to Medicaid and things like that. But there, there will be some changes that people can feel resulting from these reforms.
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A
I guess I should point out that you know, when you say pharmacy benefit managers there, there are certainly some people who think that that, that is refers to the managers of the local pharmacy. I want to point out PBMs are multi billion dollar companies. These are the companies that set the formulary that determine which drugs are going to be covered by your insurance, at what tier they're going to exist. They negotiate all kinds of discounts and deals with pharmaceutical companies that have never really trickled down to the consumer which is how they grow to be those multibillion dollar companies. And this is the first time that Congress has created any level of accountability for them. So the wind is shifting in our favor there.
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B
Yes, I think that's a great point that you just made. You know Congress has addressed affordability of medications in the past but the solutions have been aimed at other stakeholders. Right. They've done a lot of insurance reforms, they've done a lot reforms aimed at the prescription drug manufacturers that PBMs had gotten off scot free. They had not been, you know, Congress had not addressed their practices before. So this is a big victory for all those of us who've been fighting for affordability and access to medications for a long time. And I think Congress now will continue to look at their practices and figure out what are the right solutions to just bend that cost curve for people who need access to life changing medications.
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A
Telehealth access for Medicare beneficiaries was extended just before the January 30th expiration. Now this seems like it should be a non negotiable for the Ms. Community but each year we find ourselves biting our nails hoping that it's extended one more time. Do you think there's a plan somewhere for a permanent solution here?
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B
That's a great question too. You have so many good questions today, John, as always, you know, the, I will say the Ms. Community has really done a lot of incredible work to change the conversation around access to telehealth. It has gone from a, you know, nice to have to a must have. In Washington D.C. you hear people saying, you know, it's a guarantee that telehealth access will be extended. It's just a matter of how long we're going to extend it. Congress has now, you know, there's bipartisan, strong agreement that we cannot let this access to telehealth lapse. People need the access. People rely on the access. You cannot roll this back. And Ms. Activists were a key part of that conversation. We raised the issue at a public policy conference and Ms. Activists testified at the House Energy and Commerce Committee about how access to telehealth is important for people living with Ms. Congress no longer debates if they're going to extend it. They are just debating, you know, is it going to be a year or two years, how long? The issue is always the price tag. Congress tries to offset the cost of anything that they put into law. There are some costs associated with telehealth access, although there's a lot of savings as well. So I, you know, I would love to see a permanent fix, permanent access to telehealth. I think we'll probably continue, continue to see some level of, you know, patchwork legislation for the years to come. But I do think people will be able to rely on that access. It's just a matter of, you know, what, what, what Congress is willing to put into pen to paper on.
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A
This past year, the Ms. Society led the Shaping Tomorrow Together initiative. Now, the centerpiece of that effort was a face to face meeting between people living with Ms. And the fda. Do you see that meeting changing the way the FDA and drug developers look at new Ms. Treatments? And do you think we're moving a little bit closer toward measuring what matters most to patients in addition to clinical biomarkers?
- [21:34]
B
I think yes. This was such a powerful meeting. It was one of the most effective and moving meetings I've seen and been a part of in my 11 years as part of the Ms. Movement. I would encourage all of your listeners to check out the recording from that meeting. It was simply incredible. People living with Ms. Shared in, in those conversations, their experiences living with Ms. And what they truly value when it comes to medications that will change their lives. What are they looking for when it comes to, you know, solutions and treatments that work for them? I think the, you know, we have heard the fda, you know, they listened to that, to the words of people living with Ms. They are, they like all the other listeners, were, you know, affected by the testimonies delivered that day. There's going to be a resulting report that is coming out in the near term. That's the next step of this patient focused drug development process and it will further capture the data that from a survey of thousands of people affected by Ms. About their experiences, their needs and wants when it comes to Ms. Disease modifying therapies and symptom management. And we will be capturing the stories of people living with Ms. In that report and just the outcomes of the, the meetings that were, that took place this fall, that conversations with the FDA will continue long into the future and with drug makers will continue long into the future. But I truly believe that that meeting, those conversations were a landmark development when it comes to shaping drug development around the Ms. Landscape in this country.
- [23:30]
A
Today's legislative climate is often described euphemistically as challenging, sometimes even polarizing. How is the Society's partnership with Crossroads Strategies helping to navigate what is very clearly a tough legislative climate?
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B
Yes, so we, so we have been partnering with Crossroads Strategies since late last summer. This is one of the most respected, renowned consulting firms in D.C. and it is a very strongly bipartisan firm. They have a deep bench on the Democratic side of the aisle and a Deep bench on the Republican side of the aisle. What we have learned in the last couple of years is that it is, you know, it's increasingly difficult to break through the noise on Capitol Hill. There is so much going on, they are debating so many issues at the very same time. So a lot of the patient advocacy groups, almost all the major patient advocacy groups at this point have hired a, what they call a K Street lobbying firm like Crossroads. For us to compete, we needed to hire consultants like Crossroads Strategies so we could get into the room where it happens. The consultants are just one part of our strategy. Our strongest tool in our toolbox is always going to be Ms. Activists reaching out to their elected leaders. Congress listens to constituents first and foremost because those are their voters and that is who they are elected to represent. That's ultimately who they're accountable to. But there are times when we, we find it difficult to get meetings or we find it tough to get meeting with the right person in the office, or we need to get some intel from Capitol Hill and again, to just break through that noise. It has been really helpful to have Crossroads on board, helping us get into offices when we need them and get, get into meetings with the right people. We've connected Ms. Activists with CROSSROADS to have really effective meetings. We've used them to elevate and carry forward the stories of people affected by Ms. Just in a much more effective way. And you know, I think that the strategy overall, as you can see, has paid off. I always give credit first and foremost to Ms. Activists, so especially when it comes to like the Ms. Research program, the restoration of that funding, that would not have happened without our Ms. Activists. But Crossroads has been so helpful at helping us, helping us understand in real time, get intel in real time from Capitol Hill and, and fine tune and hone our strategy. And we're really grateful to have them as a partner.
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A
Let's talk more specifically about this year's Public Policy Conference. What are the issues that Ms. Activists will be talking to their congressional representatives about? What are the specific asks they'll be making?
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B
Yes, so we are bringing two issues to our meetings this year. One is fully funding the Ms. Research program as well as the congressionally directed medical research program overall. And the other is protecting access to affordable health care for people living with Ms. So I've talked a lot about the Ms. Research program already, but we managed to get $15 million restored to that program for fiscal year 26. It's the environment right now for appropriations is year round. You cannot rest for a single Minute, I think we took a half day to celebrate getting that funding back and then we dove right back in to strategizing for fiscal year 27. And that's what we're going to be talking about at this public policy conference. We need our funding for fiscal year 27. We are asking for $22 million for the Ms. Research program. That reflects a small increase to account for the cost of inflation. We are also asking for robust funding, 1.626 billion for the congressionally directed medical research program. We know that if the full CDMRP umbrella has adequate funding, we don't have to compete as much for our own funding. So it's a sort of a two part ask to the appropriators, you know, adequately fund the CDMRP and fund the Ms. Research program at 22 million. So that's a fairly straightforward ask. On the healthcare front, again, the last year Congress passed HR1, the one big beautiful bill to make a lot of changes to the healthcare landscape in this country. They are thinking about doing another bill. So in the near future it's very possible that Congress would move forward another called a reconciliation bill that requires only a simple majority, another piece of legislation to address healthcare affordability and access. Right now we don't have a bill number on that. We don't know a lot of specifics. It is still very much in the formation period. But what we are asking for is that when Congress is developing these proposals, if they're looking at legislation to improve access to care, that they work with us. They must work together with people with Ms. To ensure that any solution to address healthcare affordability is truly patient centered. And that is something that was missing last year. We have a lot of concerns about the effects of HR1. We are hopeful that next time they take a crack at healthcare affordability, that people living with Ms. Are at the table and that any solution that they come up with will uphold access to comprehensive health insurance, keep out of pocket costs manageable, and protect access to medications providers and services.
- [29:24]
A
There are going to be 175 activists in Washington D.C. for the public Policy Conference. But for someone listening who's never called their representative in Congress or even sent an email, what's the single most impactful thing they can do during the week of the Public Policy Conference?
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B
Yes. So people who are at home that week of the Public Policy Conference and not in D.C. with us will have the opportunity to amplify the message that we will be delivering to Capitol Hill. They can join us in sending an alert to their member of Congress. As long as you're on our Ms. Activist list, you will be able to send a message to your representatives. And I know that, John, you will provide a link for your listeners to how they can sign up for the Ms. Activist Network. We give you a little template message that encapsulates the priorities we're asking Congress to address. You also have the opportunity to personalize that, to share your story, include your own perspective on living with ms, being affected by ms, how it affects you, and that is what really influences federal lawmakers and moves policy priorities that are important to people affected by Ms. Forward so you can join in. The bottom line is that your story and your lived experience matters. You are highly influential on Capitol Hill even if you can't be there in person.
- [30:52]
A
And you're going to find that link to sign up in today's show. Notes. You know, Stephanie, I remember watching you testify before Congress a couple of years ago, sharing your mom's story and how her Ms. Journey has shaped your career. How does your mom's experience still fuel your advocacy work?
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B
My mom is the, well, the reason I got into advocacy, and I think about her every day and I talk about her every day. She always says she doesn't do advocacy, but she gives me full permission to use her story in any venue that I need to, any conversation with an elected leader or any way I can move our our agenda forward by illuminating the issues using her story. I can't. So I do. You know, I think being a child of a person with Ms. Taught me a lot about empathy, about resilience, about being a fighter. My mom and so many other people living with ms, it's a very resilient group of people. It's a disease that comes along with a lot of uncertainty. There is so much persistence that is required of a person living with Ms. To get access to care, to get access to your medications, to try to live your best life, to navigate the disease. So I'm always so inspired by my mom and other people like her. I really think growing up as a kid of a person with Ms. Is what led me to, you know, go to public policy school and become an advocate as a professional. And it's been, you know, the joy and honor of my life to be employed full time by the National Ms. Society to do this work on behalf of her and so many others who
- [32:38]
A
are living with Ms. Well, Stephanie Stern, I want to thank you again for leading the charge when it comes to putting the issues that are most important to people affected by Ms. On our national legislative agenda. And thanks so much for talking with me today.
- [32:53]
B
Thank you, John. Always a pleasure. Can't wait to see you in Washington.
- [32:58]
A
That's going to wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 446. You'll find that link in today's show notes so you can easily copy and paste it right into an email or a text. Each year, the Many Sisters Walk Ms. Team participates in Walk Ms. By traveling to a different city where the walk is being held. And this year they're coming to my city. Next week you'll meet the captain of the Many Sisters Walk team, Bridget Delaney. I hope you'll join me for my conversation with this remarkable and inspiring woman. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
- [34:15]
B
That's.