A Duchenne Muscular Dystrophy Drug Changed My Life. My Insurance Company Won't Cover It.
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My name is Billy Ellsworth and I need your help. Since I was four, I’ve been living with a rare form of Duchenne muscular dystrophy (DMD), one that affects fewer than 1,500 kids in the United States. DMD is one of the most horrible and debilitating diseases in existence. Based on the definition of my disease at my age, I shouldn’t be able to write this letter, but the drug I’m taking has allowed me to defy the odds.
For the past five and a half years, I’ve been on a drug called eteplirsen, now known as Exondys 51. This drug produces dystrophin, a protein needed for muscle function throughout my body. Every kid who has DMD doesn’t have the ability to produce dystrophin naturally, which causes our muscles to break down. Most boys with Duchenne stop walking between the ages of 10 and 13. DMD results in severe health complications throughout one’s teens and 20s, and causes premature death before age 30. Yet today, at 16, I’m still walking, independent and self-sufficient because of Exondys 51!
Despite the clear evidence that this drug is working, my insurance company in Pennsylvania – Highmark Health – just denied me coverage. They say it’s “investigational” and “not medically necessary,” despite Exondys 51 being approved by the FDA last September. Highmark is unfairly, immorally, and potentially illegally denying coverage of the first FDA-approved treatment for DMD. I hope public officials will look into an insurance company denying me a treatment that produces dystrophin and has helped me defy the odds of my disease. When the FDA granted accelerated approval, the agency made a point to state that patients would now have access to this treatment. Highmark Health wants to take the drug away from me that is helping me so much. I am scared. If they get away with this, it will erase my progress of the last five years.
For me, Highmark's decision is disgusting and unacceptable after all I went through. I was part of the initial study that helped approve this treatment for the kids who are losing the battle against this disease. Biopsies from my arms showed the FDA that dystrophin was being produced.The reason the drug is approved is because of how well I am doing. In fact, no physician would even diagnose me with DMD based on my progress.
Insurance companies who are not doing the right thing are already being exposed. Check out Andrew Longwell’s petition and his victory over Excellus Blue Cross Blue Shield in New York. He spoke against a clear injustice and so am I. (https://www.change.org/p/excellus-bluecross-blueshield-ceo-christopher-c-booth-i-have-a-treatable-form-of-duchenne-muscular-dystrophy-i-deserve-to-live )
Please consider signing and share this with everyone you know. Highmark’s actions don’t just affect kids with DMD, but everyone who could be wronged by their insurance company for diseases that are treatable. It is a violation of our most basic civil rights and we won’t stand for it.
Thank you for your help. Shame on you Highmark for denying me access to an FDA-approved drug that has helped me for over five years.
P.S. My Mom has taken over 200 videos that prove how well I’m doing. Here’s one from a recent trip we took. (https://www.youtube.com/watch?v=07HYTYLjR-U )
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Karen Baglin needs your help with “: Highmark Health President and CEO David L. Holmberg; Pennsylvania Attorney General Josh Shapiro: A Duchenne Muscular Dystrophy Drug Changed My Life. My Insurance Company Won't Cover It.”. Join Karen and 2,458 supporters today.