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RealTalk MS
Episode 449: Putting People Affected by MS at the Center of MS Research with Sara Loud, Stephanie Buxhoeveden, and Hollie Schmidt
00:37:57
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- [00:01]
A
I'm john strum and this is real talk, mississippi. It's April 7th and we have a lot to talk about. Living with Ms. Can often feel like a loss of control, but when you join the Iconker Ms. Community, you're no longer just a patient. You become a research partner, not just a data point in someone's study. You become the person to suggest the study, to help define the study, and to participate in sharing the outcome of the study. I caught up with the Iconquer Ms. Leadership Team after attending the actrims forum. We talked about what it means to be part of this people powered research revolution and how I conquer Ms. Keeps people affected by Ms. At the center of Ms. Research. But before we get to my conversation with Sarah Loud, Stephanie Buxhovden, and Holly Schmidt, there are a few other things that you should know about the National Institutes of Health has published a Strategic Plan for Disability Health Research, outlining a person centered approach that places individuals at the center of scientific inquiry. The plan is designed to serve as a comprehensive roadmap to advance innovative research that promotes the health and well being of Americans with disabilities by defining strategic goals in four specific research, workforce, resources, and stewardship. The goals outlined in this strategic plan reflect four themes that are related to disability, whole Person Health, the inclusion of people with disabilities in research, interdisciplinary collaboration, and technology as a transformative catalyst in promoting the health and well being of people with disabilities. In advocating for whole Person Health, the report notes that disabled people have historically been defined primarily by their disability and not viewed as a whole person capable of living a healthy life. The report goes on to state that rather than focusing solely on treating specific conditions, Whole Person Health focuses on promoting health and well being across the lifespan for everyone, including people living with disabilities. This approach emphasizes supporting and empowering individuals, families, communities, and whole populations to improve health and well being across interconnected biological, behavioral, socio cultural and environmental domains. Now that may be a short list, but it's a rather heavy lift. The report goes on to acknowledge that people with disabilities are routinely excluded from participating in clinical trials and other biomedical research, and it recommits the NIH to addressing this issue by promoting the inclusion of people with disabilities in research, stating that inclusion in research should go beyond mere enrollment. So I want to take a moment to do a little editorializing here and considering I'll be talking with the Iconquer Ms. Leadership Team just a bit later in today's episode, it feels especially timely. But it's my sincere hope that researchers begin to understand that their studies will improve in almost every way when they stop looking at people living with Ms. As data points and start seeing them as willing collaborators. And that collaboration means having people living with Ms. Involved in every phase of research, from study design to recruiting to disseminating the outcome. I'm glad to see the National Institutes of Health call this out in their strategic plan, and I'm looking forward to seeing examples in future Ms. Research. Now, when it comes to promoting interdisciplinary collaboration, the report points out that disability health research spans a wide range of scientific disciplines, including medicine, neuroscience, rehabilitation science, engineering, behavioral and social sciences, data science, bioethics, public health, health services research, health economics and health law and policy. Integrating these diverse fields fosters a more comprehensive understanding of the complex factors that affect health outcomes for with disabilities and leads to research with high value real world application in calling out the role of technology, the report highlights assistive technology, including mobility devices, communication aids, sensory enhancements and accessible digital tools, as well as emerging technologies like artificial intelligence that hold the promise of enhancing diagnosis, probably personalizing treatment and supporting independent living. The report also notes that technologies like artificial intelligence also raise important ethical considerations, particularly around accessibility and affordability, privacy and confidentiality, data security, bias in algorithms and data sets, and the potential for misuse or even exclusion. There's a lot to digest in this strategic plan. I'm looking forward to seeing these aspirational goals reflected in future Ms. Research. If you'd like to review the National Institutes of Health Strategic Plan for Disability Health Research, you'll find that link in today's show. Notes. If you're living with ms, you know that your Ms. Journey isn't just about managing your symptoms and going to doctor's appointments too often. It's about navigating a complex world of insurance, high price tags, and making the right choice for your future. I want to share some of the details from a recent study that might actually give you some peace of mind when you think about the cost of your disease modifying therapy. The study went beyond a drug's price tag and looked at the economic value of anti CD20 therapies. First, let's talk terminology. Anti CD20 sounds like a secret code, but you probably know these drugs by their very familiar brand names Ocrevus, Qysimpta, Briemvie, even Rituxan. These are high efficacy treatments that target specific B cells to stop them from attacking your nervous system. Now we know these drugs are expensive. Sometimes that price tag makes it feel like these treatments are some sort of luxury. I'm sure more than a few of you have had your insurance company deny your neurologist prescription for one of these treatments and instead suggest something less expensive. And even when your prescription for a high efficacy DMT is approved, it can sometimes feel like the insurance companies are doing you a huge favor by covering it. But this study tells a very different story. Researchers analyze data from 20 different global studies to answer one question. Is the extra health benefit we get from these high efficacy drugs worth the high price we pay for them? In economics, they call this cost effectiveness. And you can think of it like this. If you buy a cheap pair of shoes that falls apart in a month, you didn't actually save money because you're constantly spending more money to replace cheap shoes. But if you buy a high quality pair of shoes that might last three or four years, that's the more cost effective choice. So here are the three big takeaways from this study. Number one, these drugs are true champions. The study found that when you compare anti CD 20s to older platform therapies, the medications that have been available for decades, well, the new drugs are often what scientists call dominant. That means they're both more effective at stopping the disease and cheaper for the health care system in the long run. And you may be wondering how that math works out. Well, these high efficacy drugs are effective at preventing the expensive stuff. They prevent relapses, they prevent hospital stays and and they prevent the need for long term disability support. Number two, the go strong first approach works. There's been a shift in Ms. Care lately towards starting with the strongest drugs first rather than failing on weaker drugs before moving up. This study provides the data to back that up. It shows that using high efficacy drugs early isn't just better for your brain health, it's actually a smarter way for the world to spend money. And that includes insurance companies. Number three, it's about access. The study noted that in some places, versions of these drugs like rituximab are incredibly cost effective because biosimilars are available. Meaning there are drugs that do the same job for a fraction of the cost, presenting no clinically meaningful differences in terms of safety and effectiveness compared to the original biologic drug. So the next time you're sitting in your neurologist's office or at home dealing with an insurance company appeal for a treatment that's been denied, just remember, science is proving that getting you the most cost effective medicine isn't just practicing good medicine, it's practicing common sense that literally adds up. Now, if you'd like to review the details of this study or have it handy the next time you have to face off against your insurance company, you'll find a link in today's show. Notes As I was reviewing this study, it occurred to me that it answers the kind of question someone living with Ms. Might ask, is my disease modifying therapy cost effective? An individual's lived experience is going to lead to great research questions. The kind of research that has real world application and usefulness. And that's what makes Iconquerms so incredibly valuable to the Ms. Community. Before I introduce you to the Iconquerms leadership team, I want to remind you that this episode of Real Talk Ms. Is sponsored by Able now, a tax advantage savings program for people with disabilities. If you're living with multiple sclerosis, this is important news. Expanded federal rules mean more adults with disabilities, including many people with ms, can open an Able now account. Able now lets individuals save and invest money without affecting their eligibility for certain public benefits like SSI or Medicaid. For many of you, it can be an essential financial tool. To learn more and understand if you're eligible to open an account, visit ablenow.com and you'll find that link in today's show. Notes Usually, science works top down. A researcher in a lab comes up with a question and they look for patients to study well. Iconquerms flips the script. It's built on the idea that you're the expert on your own life and your lived experience is the most valuable data on the planet. You know how to frame important research questions because you're the one who had trouble opening a jar yesterday, or couldn't get out of bed last Thursday, or realize that you felt 1000% better after finishing a certain exercise. Your life, your struggles and your wins can fuel the next big breakthrough. In a moment, we'll meet three remarkable women who lead Iconker Ms. And spend every day working to put people affected by Ms. At the center of Ms. Research. The theme of the 2026 Actrom SP Forum was Ms. At a Crossroads. It's really a fitting description for where we find ourselves today, witnessing a revolution in emerging technologies like agentic AI and defining new clinical frameworks while simultaneously grappling with the long standing real world challenges of symptoms like fatigue, lifespan events like menopause and aging, and care equity. Navigating this crossroads requires more than just data. It requires a bridge between the lab and the living room. Joining me today are three women who have built that bridge through Iconquerms. Sarah Loud is the CEO of the Accelerated Cure Project and Iconquerms under her Leadership Iconquerms has become a global model for how patient powered research can transform the speed of drug development and clinical understanding. Stephanie Buxhoveden is the Chief Science Officer. As a researcher, nurse practitioner and person living with ms, Stephanie provides the critical dual lens necessary for studies to ensure that science is both rigorous and relevant. Holly Schmidt is the Vice President of Scientific Operations. Holly is the driving force behind the Realms longitudinal study and the newly debuted Prada initiative, which is effectively handing the research steering wheel back to the patient community. Ladies, welcome to the podcast.
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B
So happy to be here.
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A
Sarah, Just to bring everyone listening up to speed, can you give us a quick description of what I Conquer Ms. Is all about?
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B
Sure.
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C
Iconquerms is our people powered research network. In the intro you referred to the living room, which is exactly where our community members can participate in research from. So we've taken research out of the clinic and into people's homes. Our members are able to participate not only by sharing their data and biospecimens with researchers, but also much more importantly, they're able to act as research partners. Iconquerms community members help us shape the research agenda by defining what questions we should be asking and how to answer them. They help design research studies, participate in the research itself, and then all the way through to dissemination and uptake into care. We have more than 10,000 members participating in Iconquerms and we supported a number of different research studies ranging from a simple survey all the way to longitudinal biospecimen collection.
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A
Stephanie, the theme of this year's Actrooms forum, as I just said, was Ms. At a crossroads. From your perspective, what do you think is the most critical turn the research community needs to take right now?
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B
You know, John, what I loved seeing spotlighted at Actrims was progression. Right? Feel like every conference for most of my career has been very much focused on relapse, pathology and how we stop relapses. And a lot of those of us living with progressive forms of the disease so sort of felt like research was putting them last or not really paying attention. That is definitely not the case anymore. Almost every lecture talked about progression. This is the biggest unmet need in Ms. Right now. It's amazing and inspiring to see the pharmaceutical companies dedication to finding treatments for this really difficult aspect of Ms. To treat. It's very tricky to design trials for progressive Ms. It's very expensive to bring brand new drugs to market. And every researcher and clinician that spoke at actrim's was really honed in on. All right, we we were good at treating relapses, we're really good at shutting down inflammation. Now how do we keep from getting worse despite those relapses?
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A
Holly, I'll ask you the same question. We're here at this crossroads. From your point of view, what's the most critical turn the research community needs to take right now?
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D
I totally agree with what Stephanie said and I will just echo a bit of what Sarah said, that involving patients or people affected by Ms. In research from beginning to end is a very important turn and it's starting to happen. And groups like ours are certainly helping to encourage that. And the scientists that we work with, who we get to share our models with about how exactly you do that, how do you invite people living with Ms. Into your world, into your work for the better, have also really seemed to appreciate that that helps to make their research more powerful and also helps to guarantee that the results of what they're doing and what it is they are working on are going to have an impact on people with Ms. And that's what they go into research for, is to hopefully have an impact on somebody's life for the better. And involving those people who you're hoping to impact as partners is a great way to help guarantee that will happen.
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A
Sarah, following up on what Holly just said, Actrom's 2026 featured a lot of discussion about agentic AI and new frameworks like MEDCP. How is Iconquer Ms. Positioning itself to ensure these high tech tools remain grounded in the lived experience of people with ms?
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C
Well, through the community that we've built, we have incredible people who are willing to partner with researchers and pharmaceutical companies and other partners who are advancing these high tech methodologies and products moving forward. And so bringing our members into conversation with those, those folks that are moving these things into production or into R and D and then into production is the most important thing to share the lived experience and the insights of people affected by the disease in all of those discussions from the very beginning, as early as possible, and also making sure that the people living with Ms. Are able to share their priorities in terms of what treatments, what side effects, what risk benefit willing to take. All of that conversation needs to happen literally from day one, if possible. But really yesterday was the best day to have it and today is the second best day to have it to make sure that our community members and others affected by Ms. Have the opportunity to weigh in on where these technologies are heading.
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A
Sarah drilling down a little bit at Actrooms 2026 Iconquerms featured the Prada Initiative. And I should mention to our listeners, that is not a study of designer fashion. PRADA is an acronym for Prioritized Research Agenda Development and Advancement. As I said, it was really featured at the actroms forum. Why was it important to feature the Prada Initiative to the researchers and clinicians at actroms?
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C
Well, John, it goes back to what each of us has said in one way or another, which is that it's critical that people affected by Ms. Are the folks who are driving the research agenda forward. We have to understand what types of research questions and more importantly, what problems we're trying to solve through research that matter most to people living with Ms. Or people affected by MS, including caregivers sourcing those questions through iConquerms. We have a part of the initiative called Our Questions have Power. For quite a few years now, starting during the pandemic and up to today, we invite our community members to contribute questions that they believe that research can ask and answer through the Our Questions have Power initiative. We review those questions, we put them, we make them available on our website. On the iconquerms website, we provide information. If there is existing research that can help answer any of the questions that our community members may have, then through the Prada process and Hollywood be very well served to talk about this as she was leading it. We take those questions and we work very deeply with the community to prioritize them. The Prada project is a great example of how we used a structured approach, engaging a diverse population of people affected by Ms. And also researchers as well, to come together in conversation to create a unified research agenda, in this case on Ms. Symptoms and their treatment.
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A
Holly, you've said that Prada is about featuring voices that are often excluded. What was the reaction from the scientific community when you presented the top research priorities as defined by the patient community?
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D
I think scientists, the ones that we interacted with anyway at actrims and then hopefully going forward as we continue to disseminate the research agenda to the scientific community, are very, very interested in knowing what people with Ms. Are curious about or need to know. And I think also the fact that we centered underrepresented voices in the process is also that researchers, by and large support. I think there's just a huge awareness now, so much more so than about 10 years ago when it kind of first hit our radar screen, that there are groups that have been historically left out of, excluded from even participating in research, let alone getting to participate in research decisions. And that's not right. Research should benefit Everybody, research should reflect everybody's priorities. And so the fact that we designed the process around making sure that people who traditionally have not been included were specifically and deliberately included from the very beginning, as well as the entire community as well, I think that resonates with the scientific community. And they're not interested usually in one specific subgroup. They want to know about the totality of Ms. And what everybody is curious about and needs to know. So I think our approach was received very positively. And like I said, we're looking forward to sharing the prioritized research agenda and the process and what it could mean to people with Ms. To answer some of these questions more broadly with the scientific community. And hopefully there are scientists listening to this podcast who will get interested in it and reach out to learn more.
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A
One of those research priorities focused on the intersection of aging, diet and Ms. Symptoms. Stephanie, why do you think the community is signaling for more research in these real world areas compared to the traditional focus on new disease modifying therapies?
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B
That's an excellent question, John. And I think that of course everybody is aging, so every person living with Ms. Is aging, but the vast majority of people living with Ms. Today are over the age of 55. You know, and we start to think about how do we take care of our minds and our bodies as we do get older. And certainly disease modifying therapy is a huge part of your overall health and wellness when you live with ms, but for the most part we have highly effective therapies. And so once you're on something and you're relatively stable, it's the rest of what you do in everyday life that really makes the biggest difference. And I know this firsthand. Living with Ms. And now entering my second decade of living with ms, that more so than my disease modifying therapy, which I give a lot of credit to for keeping me stable. It's my diet, it's my exercise, sleep habits, all of those things are what help me optimize my symptoms. And optimizing symptoms is where you get quality of life, right? So I think we spend a lot of time talking about DMTs and finding the right DMT, but really when it comes down to daily functioning with ms, it's more about all those other pieces of the puzzle.
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A
Well, while you and I are talking, Stephanie, you're also the principal investigator in the Iconquerms Cafe Ms. How did the fatigue and cognitive landscape discussions at actroms this year compare to the data you're seeing within the Iconquerms network?
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B
You know, what we hear at conferences really confirms what we hear from our community. And we do this longitudinal study called Real ms, where we have people living with Ms. Tracking their symptoms, and twice a year they'll tell us how they're doing. And we've been running that study for 11 years now, and. And it's encouraging to see what's being presented at conferences reflected back in what our community members are saying that fatigue is one of the main drivers of disability. I think you can use a mobility aid and get to work, but if you're too fatigued, then you're not going to be able to function in the workplace. Fatigue is a huge concern driver of disability and quality of life. Cognition changes obviously also highly impact everyone's ability to work, to raise a family, to participate fully in the things that make you who you are. I would say they aligned closely, and the data that we see in our community and the data that we're seeing in conferences align and really reinforces that those two issues in particular are of high importance to people living with Ms. And finding solutions to these more invisible symptoms that have been more challenging to treat should be a top priority for the community.
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A
Holly, at actroms, we also heard a lot about EBV vaccines and the prodromal phase of Ms. Does interest in these topics create an opportunity for iconkerms members to help researchers who look backward to identify those early triggers?
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D
Oh, I would think so, yeah. We have the ability to survey our members, to ask them about their experiences. Iconcharms members are very interesting, and they sign up with iconcharms because they're interested in participating in research and sharing their experiences. So whether it's how they're doing today, whether it's what questions they have for the future, or whether it's what's happened in the past and how did I get this disease, they're always very, you know, they always respond when we put out the call to hear what it is they have to say and how they can help with research specifically. Actually, Accelerated Cure project got its start back in 2001, 2002, with a focus on what causes Ms. And we put together a whole lot of systematic reviews on genes and viruses and nutritional factors and things like that that researchers had explored as being potentially the cause of Ms. And we found out there wasn't the cause of Ms. It was a lot of factors working together and different ones in each person. But it really, you know, it speaks to, I think, the really fundamental need of, a, how did I get this disease? But B, what do we do about it? You Know, what are the levers we can pull to prevent people from getting it in the future? Or, you know, if any of those levers are still applicable today, how can we pull them to make the disease better for people who are currently living with it? So it's still a really important question. And our community, I think, would be gung ho to help answer that question, however it was posed to them.
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A
Sarah, what's the biggest operational challenge in bridging the gap between what a pharmaceutical funder may want to study and what the Prada initiative has identified as a community priority?
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C
I think that the biggest challenge is that oftentimes the research questions like the Prada project has surfaced, questions that are very difficult to measure in a clinical study. We don't necessarily have the ability right now to measure these symptom changes. And I think that was one of the things that came through loud and clear at actrim's was the understanding within the research and care community that we need to develop more robust biomarkers for many of these symptoms, whether it's a biological biomarker, imaging, a digital biomarker, but that we also need to combine these with the lived experiences of people affected by Ms. Through patient reported outcomes and other means of collecting patient generated data. So I think that there's a gap between what many of our community members are saying they need and want studied in order to live their best lives today and what can be most effectively study today in a type of clinical research program that a pharma company or other type of funder might want to drive forward. So bridging that gap. And again, I heard very many positive statements at Actrims that recognize that that gap exists and will enable us to push forward to close the gap. I think that we have exciting times ahead in order to do that because we still have a lot of work to do.
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A
Holly, the Iconquerms Ride Council played a significant role in the Prada process. How are we ensuring that the crossroads of Ms. Research actually leads to more equitable care for underrepresented populations?
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D
Yeah, I'm really glad you asked that. You know, as you know, inclusive research, representative research, health equity in research has been a major concern of accelerated cure project for about 10 years now. And so we've been working hard to understand, understand why is it that, you know, some groups have been excluded from research in the past? What problems has that caused? What are the barriers that we can address? What are the facilitators to making sure that everybody has a place and a voice in the research ecosystem. So the RIDE Council, I think, is one of our most meaningful responses to that question. And for those who aren't familiar, the RIDE Council stands for Research, Inclusion, Diversity and Equity Council. It is about 30 people who are Iconquer Ms. Members who belong to different racial or ethnic minority groups, gender or sexual minority groups, rural residents, veterans, and other people who volunteered that they belong to a group that hasn't always been included in research and they wanted to join with us to make a difference, to share their experiences and share their priorities. And so we formed this about four or five years ago and have been meeting with them and working with them ever since. These 30 people, in addition to our learning from them, to help inform our own work. And I think Prada is an excellent example of that because they were so instrumental in that program. We also offer to connect their insights, their wisdom with outside researchers. And so we've had the pleasure of bringing researchers into conversation with the RIDE Council to answer their questions. The researchers questions about how can my research be more inclusive? How can I make sure my research is benefiting everybody, not just the people who have always benefited in the past. The researchers that we brought in include people from academic research as well as industry research. And we can host conversations of like 30 minutes or an hour, you know, however long is necessary to really talk through. We've had conversations about clinical trials that are recruiting and they want to try and diversify the research cohort. So how can you know, what are the right channels to reach people from like, let's say racial, ethnic minority groups, other topics like that. And we continue to offer that. So again, if researchers are listening and you are struggling with how can I make sure my research is as inclusive as possible? Please reach out to us and we will get you on the calendar for an upcoming RIDE Council meeting and you can benefit from the insights and the, and the perspectives of these, you know, fantastic people who are so willing to share their experiences and their community's experiences to, to make sure that they're included. They're. They have a seat at the table.
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A
Sarah, We've been looking back at Actrims 2026 today. If we look forward to Actrims 2027, what's an area of research you'd like to see Iconquer Ms. Present data on?
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C
Well, I'd love to see us present data on how patient reported outcomes and the lived experience of people affected by Ms. Can align with these biomarkers that we're talking about. So again, moving towards closing the G, maybe the types of things that are currently collected in clinical trials or the things that may be collected in the future and how again, the insights of people living with Ms. Through longitudinal surveys and through structured patient reported outcomes can provide extra additional validity to those measures. So therefore what we'd be achieving is bringing more of that lived experience more to that day to day patient insights into the clinical trial realm. And I think what we're going to have to see again is we're going to have to march down this road together for quite a period of time so that we can see that alignment. People living with Ms. And affected by Ms. Have been talking for a long time about how their experiences aren't necessarily reflected in the way that either clinical research is conducted or things like like the disease course descriptors historically have sort of bucketed people, et cetera. And so moving forward to the integration of the lived experience and patient insights through patient reported outcomes and other mechanisms into both research and care is data that I is research that I would love to see us present.
- [36:03]
A
Sarah Loud, Stephanie Buxhovdin and Holly Schmidt I want to thank you for your commitment to keeping the people affected by Ms. At the center of the Ms. Research conversation and thanks so much for talking with me today.
- [36:16]
C
Thank you so much, John.
- [36:17]
D
Thanks for having us.
- [36:19]
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 449. 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. In multiple sclerosis, the myelin that protects nerve fibers in our central nervous system is damaged and eventually destroyed. Myelin repair is a natural process, but over time that process stops working in people living with Ms. Dr. Larry Sherman and his team at Oregon Health and Science University have discovered why that happens and how that process might be restarted. I hope you plan on joining me next week when Dr. Sherman walks us through this potential game changing research. I'm John Strum. Thanks for listening. Stay safe and make healthy choices. Sam.