Advocacy & Policy Episodes

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...

If you're on Medicare, or you get your health insurance through the healthcare.gov marketplace or one of the state health insurance exchanges, then you might already know that the annual open enrollment period is about to get underway or, in some cases, is already underway. Health insurance policies change. Physician networks change. Drug formularies often change. Deductibles change. And if you're living with MS, you can't afford to go through open enrollment assuming that the health insurance ...

Living with MS comes with its own set of sometimes significant challenges. But being in the dark, unaware of the noteworthy and remarkable advances being made in MS research is one challenge that we're learning to overcome. Sharon Roman is a patient-partner and writer for the British Medical Journal Group. Sharon lives with MS and she also writes a blog called Tremlett's MS Research Explained. The blog features plain-English posts detailing the research being done by Professor Helen Tremlett an...

Health disparities, systemic inequities, and discrimination often stand in the way of gaining access to MS care for members of the LGBTQ+ community. As we explore some of the obstacles faced by members of the LGBTQ+ community in accessing healthcare, we'll gain the clinician's perspective in our conversation with MS specialist, Dr. William Conte. We'll hear about the experiences of a queer trans person living with MS when we talk with Payshunz Nagashima. And we'll learn about the National MS So...

When my wife was diagnosed with MS in 1997, the annual cost of her MS medication was $9,000. Today, the annual cost of that same medication is $110,000. We cannot allow the insanity associated with the cost of MS medications to continue. Joining me to discuss the impact of the outrageously high cost of MS medications -- and what each of us can do about it -- is the National MS Society's Vice-President of Advocacy, Steffany Stern. We're also talking about a Phase 1 clinical trial for an invest...

Planning for your financial future is good advice for everyone. But when you're living with MS, financial planning is an important part of the game plan for living your best life. Joining me to talk about the things you'll want to keep in mind as you develop your personal financial roadmap is Dick Bell, a professional financial advisor who has worked with more than 600 clients who are living with MS. We're also talking about how Russia's invasion of Ukraine is impacting MS clinical research. ...

Living with MS is expensive. And if you're curious about how expensive living with MS is, why it's so expensive, and what can be done about it, then you're going to be interested in the results of a study that was commissioned by the National MS Society. Joining me to talk about what this study revealed and what it means to individuals and families affected by MS are Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society, and the MS Society's Executive Vice-Presiden...

It's MS Awareness Week and my guest is Marti Hines. Marti is a successful event producer, entrepreneur, film producer, and director. She was diagnosed with MS in 2018, and Marti has been very transparent in sharing the highs and lows of her MS journey on her social channels. Like so many people living with MS, Marti has an amazing energy and a seemingly endless supply of resilience. You're going to enjoy meeting her. We're also talking about why increasing diversity in clinical trials is so vi...

I've always believed that the things people affected by MS want most -- things like access to quality healthcare, affordable prescription medications, and funding for MS research -- are all functions of public policy. The people who decide whether we get those things are our elected officials at both the state and federal level. That's why advocacy is a priority. The National MS Society's Public Policy Conference is taking place on March 7th. Joining me with a preview of what we can expect to s...

This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century. In this special episode of RealTalk MS, we're talking with Pieter van Galen and Amanda Montague about that sometimes-challenging conversation with your healthcare provider about MS progression. We're also highlighting My MS Roadmap, a free tool designed to make conversations with your healthcare provider easier by offering clear and easy to understand definitions of the complex language used to describe ...