Advocacy & Policy Episodes

My guest is Dr. Jackie Bhattarai and we're talking about her research exploring the disparities in MS-related depression and fatigue symptoms between African-Americans living with MS and Caucasians living with MS. We're also talking about positive clinical trial results for a drug that slows disability progression in people living with primary progressive MS and non-active secondary progressive MS. And we'll tell you about the new MS drug from Novartis that's awaiting FDA and EMA approval. You...

We're just a week away from the National MS Society's Public Policy Conference in Washington, D.C. And my guest is Diane Kramer, an MS Activist from State College, Pennsylvania, who will be attending the Public Policy Conference for the first time. Diane has experienced some of the same obstacles and frustrations that so many people living with MS experience -- insurance companies preventing her from getting the disease-modifying therapy that her neurologist prescribed, having the high cost of ...

In just two weeks, the National MS Society is hosting its annual Public Policy Conference in Washington, D.C. The centerpiece of that conference is our Day On The Hill when 300 MS Activists meet with our Congressional Representatives and Senators to discuss the legislative issues that are most important to people affected by MS. My guest is Bari Talente, the Executive Vice President of Advocacy for the National MS Society and we're talking all about this year's Public Policy Conference and the v...

This past year, a bill was introduced in the California State Assembly that would create more transparency among pharmaceutical companies and make more lower-cost generic drugs available to Californians by making it easier for the California Attorney General to prosecute pharmaceutical companies for so-called "pay for delay" deals. MS Activists in California talked to our state legislators, asking them to support this bill, known as AB 824, and on January 1st, California Governor Gavin Newsom s...

Multiple studies show that early and ongoing treatment with disease-modifying therapy is the most effective way to slow MS progression, modify the course of the disease, and maintain optimal brain health. Yet, for many people living with MS, these life-changing treatments remain out of reach. The National MS Society has released the results of a new survey that demonstrates that this problem may be much larger and more serious than you may have imagined. My guests are Tim Coetzee, the Chief Adv...

In this episode of RealTalk MS, we're re-visiting my conversation from ECTRIMS 2019 with Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society. This is one of my favorite conversations of the entire year, and you've made it this year's most downloaded and listened to RealTalk MS episode. We're also talking about a new report issued by RAND Europe, entitled Exploring the Societal Burden of Multiple Sclerosis: A Study Into the Non-Clinical Impact of the Disease, Incl...

What can you do when the MS medication you need can cost $80,000, $90,000 or even $100,000 a year, and you don't have health insurance? Or you have health insurance, but your insurance company won't approve the specific disease-modifying therapy that your neurologist thinks will be best for you? My guest is Lisa Aquillano, a Clinical Pharmacy Specialist in Multiple Sclerosis at Emory University Hospital in Atlanta, Georgia. And we're talking about specific steps that you can take to overcome th...

My guest this week is TV personality, Montel Williams. Since receiving his MS diagnosis in 1999, Montel has been a highly visible advocate for people living with MS. We're talking to Montel about his initial reaction to his own MS diagnosis, and what advice he would give to someone who was diagnosed with MS today (HINT: it's great advice!). We'll also talk to Montel about My MS Second Act, a new initiative that he's helping to launch and that you can get involved in. We're also talking about th...

Five years ago, James Beard Award-winning chef Chris Shepherd decided to hold a barbecue event in his restaurant's parking lot, to raise money for the National MS Society. Today, the Southern Smoke Festival has grown into the largest 3rd party MS Society fundraising event in the United States, and with the 5th Annual Southern Smoke Festival just a few weeks away, we're talking with Chris about how this event got its start, and how it's grown to be one of the most noteworthy culinary events in th...

Applying for social security disability benefits can be difficult. It's a stressful and challenging process with an outcome that seems fraught with uncertainty. My guest, Jamie Hall, has represented social security disability claimants before administrative law judges and the Appeals Council in 24 different states. He is also a strong supporter of the National MS Society, where he's conducted numerous seminars on social security disability issues. Jamie is a member of the MS Society's 2010 Lead...