If you are an MS advocate or a policy wonk like me, you may have already heard the great news about some legislative wins this week. Thank you to all of the MS Advocates and Society staff for many meetings, phone calls and emails to get this through.
Yesterday, Feb. 3, Congress passed legislation that included some of the key needs that MS Activists have been asking for – reinstated research funding in the Dept. of Defense, extending telehealth access and reforms to pharmacy benefit managers (PBMs). Here’s a bit more from the National MS Society, and you can read their full release here.
- Multiple Sclerosis Research Program (MSRP) funding partially restored: Included in the bill text is $15 million in research funding for the MSRP through the Congressionally Directed Medical Research Program (CDMRP). Congress did not provide funding for this research in FY2025, so this funding reinstatement is a major victory. Thousands of MS Activists sent messages to Congress, made calls, held in-person and virtual meetings, engaged on social media on this issue, and more—and Congress listened.
- I think this is some of the best news, and while it wasn’t funded to previous levels, $15 million is so much better than $0. The MSRP funds higher risk research than the NIH.
- National Institutes of Health (NIH): The Health and Human Services spending bill provides an increase of approximately $415 million over FY2025 funding levels. Importantly, the legislation also includes protections to allow the agency to fulfill its core mission to continue to be the world’s largest funder of medical research. MS Activists advocated to protect and secure NIH funding throughout the course of this past year.
- When I was first diagnosed with MS, only 2 DMTs existed – Betaseron and Avonex. It’s been less than 25 years, and there are now over 20 options. These drugs are due to research funded by the NIH.
- Pharmacy Benefit Manager (PBM) reforms: The bill contains key transparency and compensation reforms that will begin to bring much-needed oversight to this industry, which plays a key role in drug pricing and access to medications. PBM reform has been a Society advocacy priority for over five years, and we will continue to work with Congress to ensure that PBM reforms benefit consumers.
- Time will tell what this means but maybe we’ll have an easier time accessing DMTs and even paying for them.
- Telehealth access extended: The legislation extends access to telehealth options for Medicare beneficiaries past their January 30, 2026 expiration. Telehealth has been a focus of our work on the Hill in recent years, including hundreds of activist visits and even MS Activist testimony before the House Energy and Commerce Committee at a pivotal hearing.
- It’s so important for telehealth options – I know how difficult it can be going an hour or more to see your neurologist or doctor sometimes.
If you are interested in becoming a MS Activist like me, you can learn more here: https://www.nationalmssociety.org/how-you-can-help/get-involved/advocate/become-an-ms-activist/join-ms-activist-network
And, I look forward to seeing many fellow activists at the National MS Society’s Public Policy Conference in March. .