RealTalk MS – Episode 446

Theme: MS Advocacy and the National MS Society's Public Policy Conference
Host: Jon Strum
Guest: Steffany Stern, Vice President of Advocacy, National MS Society
Release Date: March 16, 2026

Episode Overview

This episode focuses on the power and outcomes of MS advocacy, previewing the 2026 National MS Society’s Public Policy Conference in Washington, D.C. Jon Strum interviews Steffany Stern about key advocacy wins over the past year, the challenges facing the MS community at the policy level, and what the Society’s activists will be pushing for on Capitol Hill. It’s an inspiring, informative conversation for anyone affected by multiple sclerosis.

Key Discussion Points & Insights

The Changing Advocacy Landscape in D.C.

• Unusual legislative climate and shifting priorities:
  Steffany Stern describes the current year as a time of “extreme ups and downs” in Congress, with new threats to MS research and care but also several advocacy victories.

• The power of persistent advocacy:
  “We fought all year. We made our calls... and in January, Congress passed a massive spending bill that included four of our priorities.” (Steffany Stern, 09:35)
  Despite major headwinds, MS activists helped restore almost all MS research funding and gain reforms in drug pricing and telehealth.

Recent Advocacy Wins

• MS Research Funding Restored:
  The MS Research Program, which was “zeroed out” in 2025, had $15M out of $20M restored for 2026, thanks to relentless lobbying and data-gathering from activists.
  “Every year we will have to make the case to Congress about why we should get funded... There’s way less certainty now than there has been in the past.” (Steffany Stern, 13:30)

• Pharmacy Benefit Manager (PBM) Reform:
  For the first time, Congress passed reforms increasing transparency in PBMs’ practices and ensuring some savings flow to consumers. This is meant to ultimately lower out-of-pocket prescription costs, though more work remains.

  “PBMs had gotten off scot free... This is a big victory for all those of us who’ve been fighting for affordability and access to medications for a long time.” (Steffany Stern, 18:11)

• Telehealth Extension for Medicare:
  Advocacy efforts ensured another extension of telehealth access, now widely recognized as essential for MS care. Permanent policy is still missing due to budgeting debates. “It has gone from a, you know, nice to have to a must have.” (Steffany Stern, 19:22)

• Other priorities in the big spending bill:
  Protection for NIH funding and PBM transparency reforms.

The Ongoing Fight for Research and Medical Access

• Annual, not automatic, funding approach:
  Federal appropriators now make MS research funding decisions annually, making every Congressional meeting critical.
  “There’s way less certainty now... Every year we will have to make the case.” (Steffany Stern, 13:34)

• Building a bipartisan coalition:
  Success depends on identifying and cultivating champions in both parties who are committed advocates for MS in appropriations battles.

Upcoming Public Policy Conference & Advocacy Priorities

• Two main asks:

  1. Fully fund the MS Research Program ($22M ask for FY27) and the larger medical research budget umbrella.
  2. Protect access to affordable, comprehensive health care for people living with MS and ensure upcoming health reforms are patient-centered.
     “We are also asking for robust funding, $1.626 billion for the congressionally directed medical research program.” (Steffany Stern, 27:32)

• Congress “must work together with people with MS” to ensure reforms to healthcare affordability address their real needs (providers, medications, insurance access).

The Power of Storytelling and Community Participation

• Every constituent matters:
  The most effective advocacy tool is personal stories – listeners at home can make a significant impact by emailing their legislators during the Policy Conference.
  “Your story and your lived experience matters. You are highly influential on Capitol Hill, even if you can’t be there in person.” (Steffany Stern, 30:05)

• Steffany’s personal story:
  Stern’s advocacy is deeply inspired by her mother’s journey with MS.
  “I think being a child of a person with MS taught me a lot about empathy, about resilience, about being a fighter.” (Steffany Stern, 31:23)

Partnerships and Strategies

• Collaboration with Crossroads Strategies:
  Hiring a bipartisan lobbying firm has helped the Society “get into the room where it happens”—though direct constituent advocacy remains most impactful.
  “Our strongest tool in our toolbox is always going to be MS activists reaching out to their elected leaders.” (Steffany Stern, 24:30)

• Shaping Tomorrow Together & Patient-Focused Drug Development:
  Recent face-to-face meetings with the FDA have elevated patient voices in drug development, shifting focus toward what matters most to people with MS, not just clinical biomarkers.

  “I truly believe those conversations were a landmark development... shaping drug development around the MS landscape in this country.” (Steffany Stern, 22:52)

Notable Quotes and Memorable Moments

• On the power of grassroots:
  “MS activists across the country, they just never quit. It is so inspiring.” (Steffany Stern, 09:03)
• On PBMs:
  “PBMs are multi-billion dollar companies. These are the companies that set the formulary, determine which drugs are going to be covered by your insurance, at what tier... This is the first time that Congress has created any level of accountability for them.” (Jon Strum, 17:20)
• On persistent advocacy after funding losses:
  “We built on the momentum... What was the key strategy to get our funding secured in the coming year?... There is way less certainty now than there has been in the past.” (Steffany Stern, 13:10)
• On the importance of lived experience:
  “Your story and your lived experience matters. You are highly influential on Capitol Hill even if you can’t be there in person.” (Steffany Stern, 30:05)

Timestamps for Key Segments

| Time | Topic | |------------|---------------------------------------------------------------------------------------| | 07:53 | The current legislative climate and advocacy optimism | | 12:02 | How activists regained MS research funding after cutbacks | | 15:22 | What pharmacy benefit manager reforms mean for people with MS | | 18:59 | Telehealth extension for Medicare and the prospects for permanent coverage | | 21:33 | Patient-focused drug development: landmark FDA meeting and upcoming report | | 23:46 | Working with Crossroads Strategies to break through the noise on Capitol Hill | | 26:25 | The two key advocacy asks at the 2026 Public Policy Conference | | 29:43 | How listeners and home activists can participate: the power of sharing your story | | 31:09 | The personal roots of Steffany Stern’s drive for advocacy |

Flow & Tone

The tone of the episode is pragmatic and motivating, blending Stern’s optimism with a frank discussion of the tough, shifting policy environment. Both host and guest emphasize the power of consistent grassroots advocacy, evidence-based argument, and the unique value of personal stories in effecting legislative change.

For Listeners Who Missed the Episode

This conversation delivers a comprehensive overview of the current policy challenges and hard-won victories for the MS community, emphasizing that while the environment is unpredictable, persistent collective action yields real change. It’s a standout episode for anyone interested in the intersection of lived experience, legislative action, and patient-centered progress.

Action Links:

• Sign up for the MS Activist Network
• Walk MS donation
• GEM Study & patient-focused drug development details available in the episode show notes.