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RealTalk MS
Episode 448: At the National MS Society's Public Policy Conference with David, Cliff, and Michelle
00:31:48
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- [00:01]
A
I'm john strum and this is real talk, mississippi. It's March 31st and we have a lot to talk about. I was in Washington, D.C. last week attending the National Ms. Society's Public Policy Conference. This event brought together about 170ms. Activists from across the country to discuss the legislative issues that affect people living with Ms. And to take those issues to Capitol Hill, where we shared our stories in literally hundreds of meetings with members of Congress. If you caught episode 446 of the podcast, you heard Stephanie Stern, the Ms. Society's Vice President of Advocacy, talk about the issues that we were taking to Capitol Hill. And if you've ever wondered about the effectiveness of advocacy, I'd urge you to listen to Stephanie talk about the gains that were made in the past year, an incredibly challenging year when it comes to healthcare advocacy. That's realtalkms.com446 and you'll find a link to that episode in today's show. Notes One of the issues that's always on every Ms. Activist's radar is ensuring that people living with Ms. Have access to quality, affordable health care. And as many of you are often reminded of, as you seek Ms. Care, there can be multiple obstacles standing in the way of accessing that quality, quote unquote affordable care. As I look at the healthcare ecosystem, the biggest obstacle, the single most frustrating gatekeeper to healthcare in the United States is the insurance industry. From determining which doctors are in and out of network, to providing all the hoops an individual has to jump through just to receive the prescription medication that their neurologist has prescribed, to determining how much your out of pocket costs are going to be. Insurance companies seem to play multiple roles when it comes to standing in the way of accessing care. One of the stories we heard at the Public Policy Conference was Sean's Shawn lives in Nevada and his neurologist ordered a pretty standard Ms. Diagnostic protocol, four MRIs and a comprehensive blood panel. Sean's insurance company denied everything. Now those four MRIs and that blood panel would cost Sean $11,000 out of pocket not to get treated for MS, just to get the diagnostic analysis so that Sean and his neurologist would understand the status of his disease. We also heard Cody's story. Cody lives in Illinois and seeing the high price of health insurance, Cody realized he could only afford a very low cost policy that unfortunately also provided very limited coverage. And here's an important detail. Cody had not been diagnosed with Ms. When he enrolled in this health care coverage, but once he was diagnosed, his insurance company still classified his Ms. As a pre existing condition, which meant that Cody's $7,000 a month disease modifying therapy would have to be paid out of pocket, which plunged Cody into unbelievably high medical debt. And we heard Kristen's story. Kristen lives in Maine and this year she saw her insurance Premiums go from 11amonth to $240 a month with a $7,500 deductible from for each member of her family of three. And by the way, if Kristin has to see an out of network provider, that deductible for the three members of Kristin's family, well, it becomes $30,000. It's hard to come away from the Public Policy Conference and not feel outraged by some of the stories that are shared, but also inspired by the resilience and bravery of the Ms. Activists who were willing to share some of the worst moments in their Ms. Journey to make sure that our representatives in the House and Senate understand why the legislation we ask them to support is so vitally important. I met some truly amazing Ms. Activists at this year's Public Policy Conference and you'll be meeting some of them later in today's episode. But before we get to those conversations, there are a few other things that you should know about. A couple of months ago, we learned that Congress was not going to renew the enhanced premium tax credits for health insurance purchased through the online marketplace established as part of the Affordable Care Act. Now, that decision carries real human consequences, and here's how those consequences are shaping up. Kff, formerly known as the Kaiser Family foundation, has just published results of a survey that found one in 10 people who purchased health insurance in 2025 through that online marketplace was now uninsured. One in every six people who did purchase health insurance through the ACA Marketplace in 2026 said they were not confident that they'd be able to afford their monthly health insurance premiums throughout the year. A quarter of the enrollees elected to downgrade their health insurance from a so called silver plan in 2025 to a bronze plan in 2026, with the bronze plans offering lower premiums but higher out of pocket costs. 3 and 4 returning Marketplace enrollees said they're, quote, unquote, very worried or somewhat worried about being able to afford costs for emergency care or hospitalizations, while about half of the enrollees are worried about affording costs for routine medical visits or prescription drugs. Just over half of the returning enrollees say they're cutting back spending on food or basic household items to afford the costs of coverage and care. And the impact is even greater for returning enrollees with chronic health conditions, with 62% saying they're cutting back on food or other household items to help them afford their health care costs. So what happens to the 2 million people who no longer have health insurance? We know because we've been there before. Before the Affordable Care act, emergency rooms were tremendously overcrowded because so many people were forced use the ER for their basic health care needs. It meant that many people simply overlooked minor health issues that ended up not going away but worsening, finally requiring extensive and costly care. It meant medical debt was higher for families and the health status of millions of Americans was lower. Welcome to access to healthcare in 2026. Now, if you'd like to review the details of the KFF survey, you'll find that link in today's show. Notes the National Ms. Society is investing $2.3 million in early stage research projects focused on women's health and Ms. Women are diagnosed with Ms. Three times more often than men, and they experience unique challenges across their lifespan, including pregnancy, menopause and gynecologic cancer. While these issues have an effect on life with ms, there's still limited research available to guide care. A total of 11 research projects are being funded with investments of up to $200,000 over two years, and I want to point out that these are early stage investments that have the potential to launch larger clinical studies as these projects progress. One of the projects being funded will allow researchers at the University of Wisconsin, Madison to study women with Ms. Going through menopause to create a set of resources to help women with Ms. Cope better with that transition. Another project comes from researchers at the Harvard School of Public Health, where they're investigating changes in blood that can predict disability in women with Ms. Long before menopause that can help prevent future disability and disease progression. Researchers at Rohrer University in Germany are investigating whether the use of disease modifying therapy by pregnant women with Ms. Affects the growth and health of their children. Researchers at Brigham and Women's Hospital in Boston are investigating factors that may prevent women with Ms. From receiving cancer screenings and ways to make access to those cancer screenings easier. Researchers at the Cleveland Clinic foundation in Las Vegas and the University of California, San Diego are investigating the contribution of reproductive aging and general aging to the worsening of Ms. Symptoms that can occur during midlife in women with Ms. Researchers at Colorado State University are testing a muscle stimulation device to see if it can improve walking, standing and muscle strength in women with Ms. Who are in late perimenopause and early post menopause. Researchers at St. Michael's Hospital in Toronto are studying hot flashes in women with Ms. Compared to women without Ms. To learn how hot flashes impact fatigue, disability and quality of life in women with Ms. Researchers at the National Institute of Biology in Slovenia are working on modifying a beneficial type of immune cell called regulatory T cells so that they can work better in women with Ms. Researchers from the University of Texas Southwestern Medical center and the Cleveland Clinic are using data from the NARCOMS Registry of People with Ms. To investigate how menopause and treatments for men affect quality of life, Ms. symptoms and changes in Ms. Disease course over time. Researchers at the University of Virginia are partnering with the Accelerated CURE Project for Ms. To conduct a series of surveys and interviews with women with Ms. In menopause along with healthc care providers to provide better support for women with Ms. In menopause and improve their quality of life. Researchers at the Mayo Clinic are studying brain MRI scans from women with Ms. Who had their ovaries surgically removed to see if they have worse biomarkers of brain damage on MRI compared to women with Ms. Who went through natural menopause or who have not yet gone through menopause to examine the short term and long term effects of ovary removal. There are 11 research projects in total, each designed ultimately to provide better Ms. Care for women throughout their lifespan. As always, we'll update you as this work moves forward. Biopharmaceutical company Innocare Pharma announced that the first healthy participant has been dosed in a clinical trial of ICP538, an experimental oral treatment for Ms. And other autoimmune diseases. In autoimmune diseases like MS, the immune system mistakenly attacks the body's own cells. ISP538 is designed to degrade a specific protein that's essential in order for B cells and T cells to function. Now, B cells and T cells are immune cells that play important roles in driving that autoimmune response. By degrading this specific protein, ICP538 is expected to lessen the activity of these immune cells and reduce the inflammatory damage to myelin that takes place in multiple sclerosis. In addition to MS, InnoCare is developing ICP538 as a treatment for inflammatory bowel disease and lupus. The clinical trial for ICP538 is underway in China, and we'll keep you posted as intacare provides future updates. Researchers at the University of Illinois Urbana Champaign are conducting a study to learn how well different fall prevention programs work for people with spinal cord injuries and multiple sclerosis. The whole study takes place online and involves an orientation session to learn about the program Participating in an intervention to learn about fall prevention completing three online surveys before, during and after viewing that fall prevention program, tracking how often you fall over a 14 week period and some study participants will be selected for an online interview at the conclusion of the study. If you're interested in participating in the study, you need to be 18 years old or older with a history of Ms. Or spinal cord injury. You need to be unable to walk outside of your home for 25ft or more. You need to be able to transfer with minimal or moderate assistance. You need to have experienced at least one fall in the past year. You need to have a care partner to assist you when you're practicing physical skills, you need to have access to a smartphone or iPad, and you need a stable Internet connection. Study participants who complete all three surveys will receive a $180Amazon gift card, and if you're selected for an interview at the end of the study, you'll receive an additional $20 that will be added on to that gift card. If you're interested in participating or learning more about this study, you can email dpqol f a l l p r e v@illinois.edu and you'll find that link in today's show. Notes While we're talking about research, it's a good time to remind you that the only federal funding specifically earmarked for Ms. Research comes from the Ms. Research Program at the Department of Defense. Congress has funded this program since its inception in 2009. That is, until last year, when Congress cut funding for this program to zero. Just last month, $15 million of that funding was restored for fiscal year 2026. And last week at the Ms. Society's public policy conference, $22 million in funding for this program in fiscal year 2027 was announced as one of two legislative priorities that we took to Capitol Hill. In a moment, you'll meet some of the Ms. Activists that I met at the 2026 Public Policy Conference. David Silbaugh is a retired colonel in the United States Army. He spent 30 years in the army, receiving two Legions of Merit, a Purple Heart, and two Bronze Stars. David was diagnosed with Ms. Nine years ago, and it's important for me to mention David is an Ms. Activist. David, welcome to the podcast.
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B
Thank you very much. Hi Green here.
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A
Tell me, why is it important for you to be at the Public Policy Conference this year.
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B
It's important for me to know the topics, more of the topics across the board that other Ms. Activists bring to the table. Whether they've lived through or talked to other people who have various conditions, various fights, various topics that we need to bring to elected officials to garner their attention, their support, so we can all make our lives better.
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A
Well, as we think about the topics we're going to be talking about this year, you're one of more than 70,000 veterans who have been diagnosed with Ms. Last year you saw the Ms. Research program, which is a Department of Defense program and the only federal program specifically funding Ms. Research. You saw that program lose all of its funding. And then last month Congress restored $15 million of that funding to the Ms. Research program. What are your thoughts about the program?
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B
I think it's an amazing program overall. I wish I knew about it earlier. I was, I'm kind of late to the name figuring out what the Ms. Society is and what it does. But that was one of the topics I latched onto immediately. Having something that really focuses on veterans have. That's a great topic overall and I just look forward to trying to steer this ship to where we can gain support for more veterans, more issues.
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A
We certainly appreciate your taking the wheel and helping us steer the ship. What's really so great about that program? A couple of things. First, I should point out that it is a Department of Defense program, but the research that comes out of it, it benefits the entire Ms. Community. Everyone benefits. And the research kid funds is very specific. This program funds high risk, high reward kinds of research projects. So tomorrow you're going to be on Capitol Hill. What's your message for the members of Congress that you'll be meeting with?
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B
I want to punch a hole in to sky. I, you know, we need to figure out, yes, the high risk, high rewards issues that are going to help all of us get better. And I, I just, I understand with the appropriations process, with the competing priorities that it could be relatively easy to reduce or zero out the funding for the msrp. And that really doesn't help us. But we need to communicate to the elected officials how important it is, get in front of them as their constituents to be able to say, I am your constituent, I live in your district. I am a person within this is well ready to take.
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A
David Silvaugh, I want to first thank you for your service and thank you for your advocacy on behalf of the entire Ms. Community.
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B
Thank you very much.
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A
I'm talking with Cliff Curry from North Carolina. Cliff is An Ms. Activist, he is a first time attendee at the Public Policy Conference. Cliff, what are some of your impressions of what you've seen and heard so far?
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B
Thank you, John. I have to say, wow. I was not expecting this at all. I thought we would come here, we would talk about a few things and then we'd go talk to our representatives. I guess I didn't have many expectations, but to get here and to see the movement behind what's happening in the Ms. Space now I understand where the innovation is happening. Why we have so many DMTs now, why we have so many passionate people on all spectrums, like from the people that make the drugs to the people that take the drugs. They're all in these rooms that we're meeting them and it's incredible. And everybody's got a smile on their face because I think they all feel like we are, we are making progress, we're making a difference being here and it's been fatiguing. I think that's the word I'm going to use today because we're going from breakout session to breakout session to breakout session to make sure we're all on the same, on all the same foot going into these meetings with our elected officials. We all have a consistent message and the amount of work that they've put into this is just like, it's just incredible to organize this many passionate people. So I'm very impressed. It's very cool.
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A
When were you diagnosed, Cliff?
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B
I was diagnosed in 2018, but I've been having symptoms for 20 years. Right.
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A
Why is advocacy important to you?
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B
I think there's several reasons that the advocacy is so important. It's number one, obviously we've all got to have a consistent message about where we want to go with Ms. And that is end it. Right. And how we're going to get there. That's the other part. And how it affects each and every one of us differently, that's one of the tricky things. So when we're together as a group and we're advocating for each other, we have a unified message across a very complicated disease that's very difficult to study and is very expensive to study. So it kind of covers we hit on all those nets when we're together. And so I think the advocacy, I mean it speaks for itself. It is really making a difference in where we're getting with finding a cure for this disease. I honestly feel like, I feel like it's going to happen in our lifetime. And if you would ask me that five years ago, I'D say, no, that's not going to happen in my lifetime, maybe my son's. But now with the NFLs that are happening, the neurofilament light chain things which are a direct result of advocacy and other programs that are happening and funding these kind of things, I just, I see. I see a light at the end of the tunnel. And so the advocacy is working. I think that's important.
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A
What's your message tomorrow on Capitol Hill?
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B
Oh, my gosh. The big message is like, listen to the patient. Right. Right now, they've got a lot of external forces on them. Those people on Capitol Hill are dealing with a lot of different policy things, a lot of confusion between parties. And so the idea is that at the end of the day, they're working for us. We are the patients, and we need something that works for us. So we want to make sure we have affordable health care. We want to make sure that the research is funded. So we're getting where we need to go. I mean, of all the diseases that I know of, and I'm just a nerdy engineer, Ms. Has the most promise for helping people, the most amount of people. We think we have a million people in the United States alone with diagnosed Ms. The things that have happened in the last 10 years in the research space show a lot of promise. So the research money is working, and we got to keep pumping that in because in the end, in the long run, it's going to pay off.
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A
So you said something interesting a minute ago. You said, referring to members of Congress, they work for us. So let's take a look at where we've traveled over the past year. Over the past year, we've seen the Ms. Research program defunded, we've seen it refunded to a point, and hopefully we'll get the rest of the way after our meetings. We have seen healthcare severely curtailed in terms of access to healthcare, cost of healthcare, all of those things. Do you feel like your representatives are working for you? As someone living with ms?
- [24:09]
B
The answer would be yes if they could focus on just that. Because everybody knows somebody that's affected by ms, Right? Because it doesn't just affect that person, it affects the family, it affects the community. It affects everybody down downstream. But I think with what's currently happening in Washington, I don't know. I'm guessing we're going to find out tomorrow. You know, it's going to be a very telling next few months. And I wanted to say to everybody out there, as someone who's just been living with this disease for the last few years or for the last. Well, for last 20 years at least. But being diagnosed in 2018, I wasn't big into advocacy. I was just trying to go through the paces of figuring out my own life. You know, dealing with new DMTs, having a son, having a wife, trying to manage, working some type of job that allowed me to sleep two times a day. You know, like ridiculous situations that just are really hard to accommodate, but the efficacy in the end of the day, and this is what this conference has showed me, really has a huge impact on where we're going with this disease. And every single person out there, whether it be just telling your story or just being part of a community where we can tell a collective story, I think has a huge impact. And I didn't really get that until now.
- [25:18]
A
Everybody who just heard what you said should visit nationalmssociety.org advocacy and choose to get involved. It doesn't mean they have to get on a plane and come to Washington. You can get involved from your own home and that way your voice can be part of the voices that speak up for the entire Ms. Community. Cliff, after all these years, it's been great meeting you face to face.
- [25:41]
B
Yes. Thank you, John. I love the show. Keep it going.
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A
We're standing in the Hart Senate Building with Michelle. Michelle is here at the Public Policy Conference for the first time. And this is actually before our very first meeting with Senator Adam Schiff. So, Michelle, what are your thoughts as you're getting ready to walk into the Senator's office?
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C
I'm a little nervous, but mostly excited. I think it'll be an interesting meeting. I have not met Senator Adam Schiff before.
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A
What are your thoughts about the whole day? We have meetings with Senator Schiff's office and then we have three meetings with three different congressional representatives. What are your expectations?
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C
I mean, having having that with Judy Chu or her staffers for a number of years during the August recess? My expectation is the meetings are very similar to those meetings. I don't know that they'll be much different, although I think there's an excitement about it all being in D.C. instead of on Zoom or in Pasadena.
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A
So we're a couple of days into the Public Policy Conference field day. Today is kind of the last day. What's been your experience so far?
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C
It's been really exciting being here and meeting a lot of other Ms. Advocates. I don't engage a lot in the Ms. Community and so this has sort of been like a shift for me. It's been Exciting to be here with everybody else squirting my orange, you know.
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A
So I'm going to be checking in with you at the end of the day to sort of take your temperature.
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C
Sounds great, John.
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A
I'm with my friend Michelle again and we have had a long day of congressional visits where walking out past the House office, one of the House office buildings now. And Michelle, when I talked to you this morning, it was before your very first meeting. Now you're a seasoned veteran of the process. Tell me what your thoughts were. What did you think of today?
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C
I thought we had a really productive day. I think it helped that all of the representatives and the one staffer for the Senate member we met with were all in favor of healthcare for everyone and, you know, making sure that healthcare is affordable. They all support the msrp. So I thought our meetings went really well and I was really happy to be involved.
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A
Were there any surprises in the process itself compared to what you might have thought it was going to be like?
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C
There was more waiting than I expected.
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A
Unfortunately, it's hard to get them all bunched together, so you end up with a lot of hurry up and wait in between.
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C
Yeah. I also really enjoyed just taking the packets of the leave behinds to the various offices where we didn't have meetings and just having impromptu conversations with staffers. And I ended up meeting a health staffer in one of the offices and discovered some interesting fun sex. Like I. I thought that experience was also really fun.
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A
What would your set of recommendations or suggestions be to someone who maybe has never attended Public Policy Conference but might be here next year?
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C
I would come with a pretty open mind about what the day is going to look like. I would bring snacks. I would wear really comfortable shoes and just learn everything you need to learn about the topics that are being presented and discussed so that you can have a really authentic conversation with the staffers or representatives. Because I think the more authentic you can be with them, the better those conversations all go well.
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A
Speaking of authenticity, did it come across to you, and I think that we heard it from almost every staffer we met with the value of sharing your personal story?
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C
Yes, they all really thanked us for being there in person. I think it really means a lot to them for us to be there and share our stories in that way. I think they all really appreciated us being here.
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A
Any final thoughts, final words?
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C
I would totally do this again. I thought it was a blast and I loved being here.
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A
Well, thanks so much for sharing that. Thanks for talking with me. I totally ask you the same questions again next year.
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C
Great, John. Thank you so much.
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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 448. 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. Iconquerms is where the Ms. Community, the patients, the care partners and the researchers all come together to find answers. It's the ultimate example of people powered research in action. So what's it like when I conquer Ms. Attends a major scientific meeting? I hope you'll join me next week as I talk with the Iconquerms leadership team, CEO Sarah Loud, Chief Science Officer Stephanie Bucks Hoveden, and Vice President of Scientific Operations Holly Schmidt. We're going to be discussing their experiences at this year's Actrooms Forum and the vital research Iconquerms is driving forward. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
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B
Sa.