RealTalk MS – Episode 448

At the National MS Society's Public Policy Conference with David, Cliff, and Michelle
Host: Jon Strum | Date: March 30, 2026

Main Theme:

This episode centers on Jon Strum’s attendance at the National MS Society's 2026 Public Policy Conference in Washington, D.C. The show explores advocacy efforts for people with multiple sclerosis (MS), focusing on legislative challenges, the impact of healthcare policy, new research initiatives (especially those focused on women’s health), and firsthand experiences from MS advocates who met with Congress to push for better access, affordability, and funding for MS research.

Key Discussion Points & Insights

1. The State of MS Advocacy and Healthcare Access (00:01–15:00)

• The Conference: Over 170 MS activists from across the country converged on Capitol Hill to advocate for policies affecting the MS community. Jon highlights the unity and resilience among attendees who shared their stories with lawmakers.
• Insurance Hurdles:
  • Jon shares stories illustrating health insurance barriers:
    • Sean (Nevada): Insurance refused coverage for essential diagnostics; out-of-pocket cost would have been $11,000.
    • Cody (Illinois): Low-cost plan precluded MS coverage as a pre-existing condition, requiring $7,000/month out-of-pocket (leads to high medical debt).
    • Kristen (Maine): Premiums skyrocketed to $240/month with a $7,500 deductible per family member, out-of-network deductible reaches $30,000.
  • Jon’s reflection: “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…” (09:21)
• Wider Policy Impact: The non-renewal of enhanced ACA premium tax credits directly led to millions losing insurance, downgraded plans, and many cutting back essentials (62% of chronically ill enrollees cut back on food/household goods for healthcare costs).
  • “Welcome to access to healthcare in 2026.” (12:56)

2. New Research Announcements—Women’s Health & MS (15:00–15:40)

• National MS Society Investment: $2.3 million allocated to 11 early-stage projects focused on various aspects of women’s health and MS, including menopause, pregnancy, gynecologic cancer, impact of reproductive aging, and support resources.
• Highlighted Research:
  • Menopause and MS transitions (University of Wisconsin).
  • Predicting disability via blood markers before menopause (Harvard School of Public Health).
  • Effects of disease-modifying therapy in pregnancy (Rohrer University, Germany).
  • Barriers to cancer screening (Brigham and Women's Hospital).
  • Impact of surgical ovary removal on MS (Mayo Clinic).
• Jon’s take:
  • “There are 11 research projects in total, each designed ultimately to provide better MS care for women throughout their lifespan.” (14:57)

3. Research Funding and Clinical Trials Update (15:40–16:25)

• ICP538 Clinical Trial: New oral therapy candidate targeting B and T cells (by InnoCare Pharma) is in early trials in China.
• Fall Prevention Study: University of Illinois Urbana-Champaign is seeking participants with MS or spinal cord injuries for an online program testing fall prevention strategies.

4. The MS Research Program – Funding Challenges (16:25–17:47)

• Background: Department of Defense’s “MS Research Program” (MSRP) is the only federally earmarked MS research funding and was cut to zero last year, but $15M restored for FY2026 and $22M proposed for FY2027.
• Advocacy Goal: Secure long-term funding for high-risk, high-reward MS research benefiting all people with MS.

Voices from the Frontlines – Advocacy Perspectives

Interview: David Silbaugh (Retired Army Colonel & MS Activist)

(Starts at 15:47)

• On Conference Importance:
  • “It's important for me to know the topics…we need to bring to elected officials to garner their attention…” (15:54)
• On the Defense-Funded MS Research Program:
  • “Having something that really focuses on veterans…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.” (16:59)
• Message to Congress:
  • “I want to punch a hole in the sky. We need to figure out, yes, the high risk, high rewards issues that are going to help all of us get better…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.” (18:23)
• Jon’s gratitude:
  • “I want to first thank you for your service and thank you for your advocacy…” (19:20)

Interview: Cliff Curry (First-Time Conference Attendee & MS Activist, North Carolina)

(Starts at 19:29)

• First Impressions:
  • “I have to say, wow. I was not expecting this at all…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…” (19:42)
  • “It's been fatiguing…I think that's the word I'm going to use today…” (20:57)
• Diagnosis Story:
  • Symptoms for 20 years, diagnosed in 2018.
• On Advocacy:
  • “We've all got to have a consistent message about where we want to go with MS and that is end it…When we're together as a group and we're advocating for each other, we have a unified message across a very complicated disease…” (21:10)
  • Hopeful: “I honestly feel like, I feel like it's going to happen in our lifetime…if you would ask me that five years ago, I’d say, no…but now…it’s going to pay off.” (21:10–22:23)
• Message to Congress:
  • “The big message is like, listen to the patient…make sure we have affordable health care…make sure that the research is funded…The research money is working.” (22:26)
• On Representation:
  • “I wasn’t big into advocacy…I was just trying to go through the paces of figuring out my own life…but the advocacy in the end of the day…really has a huge impact on where we're going with this disease.” (24:08–25:17)
• Call to Action:
  • Jon: “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…” (25:17)

Interview: Michelle (First-Time Attendee, California)

(First segment: 25:45 / Follow-up after Capitol Hill: 27:23)

• Pre-Meeting Nerves:
  • “I'm a little nervous, but mostly excited. I think it'll be an interesting meeting. I have not met Senator Adam Schiff before.” (26:06)
• Experience Summary:
  • “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…this has sort of been like a shift for me.” (27:00)
• After a Day on the Hill:
  • “I thought we had a really productive day…They all support the MS research program, so I thought our meetings went really well and I was really happy to be involved.” (27:46)
• Unexpected Aspects:
  • “There was more waiting than I expected.” (28:15)
  • Enjoyed impromptu office visits: “I really enjoyed just taking the packets of the leave behinds to the various offices…having impromptu conversations with staffers.” (28:26)
• Advice for Future Attendees:
  • “I would come with a pretty open mind…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…” (28:57)
• On Storytelling:
  • “They all really thanked us for being there in person…I think they all really appreciated us being here.” (29:31)
• Final Thoughts:
  • “I would totally do this again. I thought it was a blast and I loved being here.” (29:49)

Notable Quotes & Memorable Moments

• Jon Strum (on the insurance system, 05:42):
  • “Insurance companies seem to play multiple roles when it comes to standing in the way of accessing care.”
• David Silbaugh (on advocacy, 18:23):
  • “I want to punch a hole in the sky. We need to figure out…high risk, high rewards issues…”
• Cliff Curry (on the hope for a cure, 21:10):
  • “...the advocacy is working. I think that's important.”
• Michelle (on the value of in-person advocacy, 29:31):
  • “They all really thanked us for being there in person…for us to be there and share our stories in that way.”

Important Timestamps

• 00:01–09:21 – Host introduction and moving stories of insurance hurdles
• 09:21–12:56 – ACA Marketplace fallout and impact on chronic illness communities
• 13:15–15:40 – New research investments in women's health and MS
• 15:47–19:27 – Interview: David Silbaugh (Army Colonel/MS advocate)
• 19:29–25:41 – Interview: Cliff Curry (First-time attendee perspectives)
• 25:45–30:00 – Interview: Michelle (Before/after Capitol Hill advocacy)
• Throughout – Host commentary and reflections on the power of community and storytelling in policy change

Takeaway & Call to Action

• The Power of Storytelling: Direct engagement with lawmakers makes a tangible difference; personal stories resonate deeply and can drive policy change.
• Get Involved: Advocacy can be as simple as sharing your story or joining online campaigns—every voice strengthens the MS community’s message.
• Hope for the Future: Veteran advocates and first-timers alike feel change is possible with persistent, unified efforts—research progress provides real optimism.

For more details and links to resources/research, visit the episode’s show notes at realtalkms.com/448.