Advocacy & Policy Episodes

2023 marks 30 years since the very first MS disease-modifying therapy received FDA approval. To say that changed everything would be an understatement. Two of the top MS experts in the world have published a reflection, looking back at how MS research and treatment has progressed over the past 30 years and looking ahead at the challenges that remain in solving the riddle of MS. Joining me this week are the authors of that reflection, Dr. Fred Lublin and Dr. Stephen Krieger. Dr. Lublin particip...

Welcome to the 300th episode of RealTalk MS! Yikes! In last week's episode of the podcast, Dr. Bruce Bebo walked us through the latest research on the prevalence of MS in the United States, and the data serves as a clear reminder that anyone can get MS. However, not everyone with MS receives the same quality of care. My guest today is clinician-researcher Dr. Lilyana Amezcua, and we're discussing her work in exploring healthcare disparities among minority populations. In addition to celebratin...

Evidence shows that MS can affect members of minority communities differently. But how does that impact the total number of people who are living with MS? For multiple reasons, it's a tricky problem to solve. Yet, it's important that the numbers reflect everyone living with MS and no one is left behind. This week, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, is on hand to walk us through the just-published results of a study that provides a more granular estim...

Disclosing your MS to your employer is an important decision that can sometimes be tricky and can sometimes lead to unintended consequences. Joining me to discuss some of the things you want to be thinking about when it comes to disclosing your MS in the workplace is a Manager on the Benefits, Employment, and Insurance Team at the National MS Society, Christina Forster. We're also extending an invitation for you to spend a quick couple of minutes taking the RealTalk MS listener survey...and we'...

If you're a regular listener, you've heard me say that the things that people affected by MS want the most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, functions of public policy. The people who decide whether we get these things are our elected officials at both the state and federal level. That's why advocacy should be a high priority for everyone affected by MS. Make no mistake. MS advocacy delivers real results....

When you visit the Oceans of Hope U.K. website, it reads, "Oceans of Hope is for people with MS, led by people with MS." It goes on to say, "Our aim is to offer people from all over the world the opportunity to experience sailing as a way of learning new skills and restoring the self-confidence which can be stolen by MS." The folks at Oceans of Hope U.K. can make that claim with high confidence. My guest today is the founder of Oceans of Hope U.K., Robert Munns, who lives with MS himself. Rober...

Two years ago, the National MS Society made a public commitment to do more to ensure that the MS movement was open to and reflective of everyone affected by MS. When you stop to consider issues like access to healthcare or MS clinical research, it quickly becomes apparent that diversity, equity, and inclusion aren't only organizational goals for the MS Society. They also address some of the systemic barriers that directly impact the quality of MS care for members of historically marginalized co...

Last week, in Episode 279 of RealTalk MS we talked with Professor Tanja Kuhlmann about a new framework for researching, diagnosing, and treating MS that was proposed by the International Advisory Committee on Clinical Trials in Multiple Sclerosis. This proposed framework represents the next evolutionary step in diagnosing and treating MS. Joining me this week to talk about how this proposed framework will impact people living with MS is the National MS Society's Chief Advocacy, Services, and Sc...

This week's episode of RealTalk MS was recorded in front of a LIVE audience at the National MS Society's 2022 Leadership Conference. Joining me in this special episode are Lori Turley, who was diagnosed with MS in 2021, and whose commitment to fundraising and advocacy is already producing dividends, and Dr. Bradley Zuchero, an MS Society-funded research fellow whose lab has discovered the biological mechanism that produces myelin in our central nervous system. In addition to my questions, our ...

A couple of months ago, the Inflation Reduction Act was signed into law. And while it touches on many different areas, it will be remembered as the most consequential healthcare bill since the Affordable Care Act. From the emails I've received, I know that many of you are wondering how and when this new law will impact what you pay for your prescription medications. The National MS Society's Vice-President of Advocacy, Steffany Stern, and MS activist Judy Wilson, join me in this episode to expl...