Family Fighting for Lifesaving Drug After Being a Part of Its Clinical Trials
A Central New York family is fighting their insurance company after their children helped get a lifesaving drug passed for Duchenne Muscular Dystrophy. They say their insurance company refuses to cover them for the medicine.
Imagine having two children who are very sick, and have a life-threatening disease. A disease that will slow their muscles until they don't work anymore, and will eventually take their life at a young age. Now imagine your two children participating in clinical trials for a drug that could possibly slow the progression of this horrible disease. The drug works and gets passed, but your insurance won't cover it. So even though your children helped the drug get passed by the Food and Drug Administration, you can't actually continue to use it...
Sounds a little messed up, doesn't it?
That's what a family from Fayetteville, New York is dealing with. Mother, Allison Willis Hoke started a petition at change.org trying to get the insurance company's CEO and the New York Attorney General to make the drug available to her two boys Jack and Nolan Willis. According to the petition,
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.
Exondys 51 is the drug that has been approved by the FDA and is the medicine that this family is fighting to have available for them, after Jack and Nolan had been involved with the clinical trials for Exondys 51 for more than 5 years. So what does Exondys 51 do for those with this type of Muscular Dystrophy? The petition states,
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.
That's a huge deal for anyone who knows how Duchenne Muscular Dystrophy affects the body. To have a drug available that can not only slow down the process that the muscles are breaking down, but even give those who suffer from it the ability to do things they couldn't before, things most of us take for granted each day, is unbelievable. Why wouldn't this drug be available to everyone who needs it?
According to the petition, they say their insurance company changed its policy to not include people in wheelchairs for this drug. And their two boys are in wheelchairs (actually, with Duchenne Muscular Dystophy, 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).
The family is trying to get 5,000 signatures in their petition, and as of right now, they're up to 3,917 signatures. You can read their whole account of the situation and sign the petition (if you chose to do so) at: change.org