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CNY Family Denied Important Muscular Dystrophy Drug After Participating in Its Clinical Trials

Needle Filled with Medicine

Imagine being a part of a clinical trial for a drug. The drug gets passed by the FDA, but now your insurance won’t cover you for the medicine. That’s exactly what’s happening to a Central New York family.

We’ve told you about Allison Willis Hoke from Fayetteville, New York and her two sons who are battling Duchenne Muscular Dystrophy. Her boys participated in clinical trials for “Exondys 51″ for over 5 years. And of course the medicine was provided to them during the clinical trials, but when the drug was passed by FDA they were not covered by their insurance to continue using the drug.

Doesn’t sound right, does it? Well, according to Hoke, their insurance wouldn’t cover the drug for those already in wheelchairs for Duchenne Muscular Dystrophy, only patients who could still walk. But with Duchenne Muscular Dystrophy, muscle proteins start to break down, and cannot be replaced, causing most suffers to be confined to a wheelchair before they even hit their teen years.

So Hoke started a petition trying to get their insurance to change their policy and make the drug available for her sons. According to, she lost her appeal for coverage again. She was denied twice from the insurance company and now she has been denied by an “independent medical expert.”

But according to Hoke, the drug was helping countless participates in the clinical trials. Suffers of the disease were able to lift up their arms, use a smartphone, brush their teeth, and do many other tasks that they couldn’t before. And if you’ve ever known someone who has Duchenne Muscular Dystrophy, you know that as they get older (as in, their teens), some of the simplest tasks become nearly impossible. And to have a drug that’s able to stop that process (or at least slow it down drastically), can make the quality of life thousands of times better for those with Duchenne Muscular Dystrophy.

So why was Hoke and her boys denied again for the drug? According to,

The review said Exondys 51 is unnecessary for the twins because the only study suggesting the drug is clinically effective was conducted on children who can walk.

But according to Hoke, their family doctor saw an improvement in her sons as well. But as much as she tries to fight the system and get the medicine her boys not only deserve, but need, it seems to go nowhere.

This is a situation no mother should ever be in. First having to deal with the risk of being in a clinical trial (because you never know what’s going to happen, what kind of side effects will be involved, or anything like that). Then the excitement of the drug getting passed. And then the downward spiral of not being able to get the drug. Where do you go next?

She could continue to fight the insurance company and even try to sue them, but that is a timely and costly process. What would you do next? What could you do?? The medicine should be available for her sons, no matter what the insurance company or “independent medical expert” has to say. If she noticed a difference in her sons’ abilities and their doctor noticed a difference, there should be no argument.


Read More on This Fayetteville Family and Their Fight for Coverage of the Drug

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