Excellus BCBS Is Denying Us The Duchenne Muscular Dystrophy Drug We Helped Get Approved.

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On behalf of every kid who is struggling with Duchenne muscular dystrophy, we started this petition to fight an unfair, discriminatory and potentially illegal situation.

In September, the FDA approved Exondys 51, a breakthrough treatment for DMD. It marked the first-ever drug approval to treat this disease, which has taken away our ability to perform many daily tasks. Our form of this deadly disease, which this drug specifically treats, affects only about 1,500. Based on frequently cited statistics, patients with DMD often don’t live past their mid 20s.

We specifically took the risk of being in a clinical trial so that other boys would be able to have an approved treatment. As patients with a disease that worsens every day, we have hoped and prayed that someday everyone would have a chance. With Exondys 51, that someday is here.

We’ve been in the drug’s clinical trial for more than five years and the drug was approved based on data from us. Other boys in New York and across the country are now able to get access to it. However, our insurance company, Excellus BlueCross BlueShield, is denying us coverage – it’s absurd!

In short, we feel that we’re being discriminated against by our insurance company because we are confined to wheelchairs.

The drug we have been on and are eligible for produces dystrophin (measured in our own arms for the study), a protein that is needed for basic muscle function, such as using your arms, fingers and, above all, breathing. Countless young men are already showing signs of improvement, including having the ability to do basic things that they couldn’t do beforehand – open a car door, brush their teeth, eat and drink, use a smartphone – the list goes on.

Our doctors constantly measure our lungs and we know we’re performing better than if we weren’t on the drug. Every day, it’s helping to slow the progression of this disease.

Unfortunately, Excellus BlueCross BlueShield is now playing games with our future, by first issuing a policy that covered the treatment, then from what we’ve heard, changing their policy overnight to exclude anyone in a wheelchair after discovering that they only had patients in wheelchairs who were eligible. While we were suspicious of Excellus’ decision, we have followed every procedure asked of our doctors, including a direct appeal of the decision. Our wheelchair-bound friend, Andrew Longwell, appealed and he won!  It proves that Excellus is discriminating against him and us.

Janet Woodcock, M.D., director of the FDA’s Center for Drug Evaluation and Research said when the drug was approved, “Patients with a particular type of Duchenne muscular dystrophy will now have access to an approved treatment for this rare and devastating disease.”

Excellus’ behavior is not only a moral issue, but a civil rights issue.

Please join with us in urging Excellus’ CEO and the New York Attorney General to give us the drug that we helped get approved and deserve to continue to receive.


Sincerely,

Jack and Nolan Willis



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