I Have a Treatable Form of Duchenne Muscular Dystrophy. I Deserve to Live.

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If you believe all insurance companies should cover a new breakthrough treatment for this relentless and fatal disease, I’d ask that you read below.

My name is Andrew Longwell and I’m 19 years old. I love hockey (go Sabres!), heavy metal, roller coasters, mac and cheese, and Xbox One.

But, when I was six, I was diagnosed with a rare form of Duchenne muscular dystrophy, a horrible disease that has taken away my dignity of care. Imagine being 19 years old and having all of your most personal needs managed by others.

Duchenne Muscular dystrophy affects 9,000 - 12,000 young men in the United States. My form of this deadly disease affects only about 1,500 of us. Chances are we won’t live past our mid-20s.

In September, I was thrilled to learn that the FDA approved a new treatment (Exondys 51) for patients like me. However, I’m now devastated because I just found out that I can’t get it.

My insurance company (Excellus BlueCross BlueShield) won’t let me have the drug that I’ve been waiting my whole life for. Every day, I get worse. No patient with Duchenne has time to wait.

This company is specifically discriminating against Duchenne patients who are in a wheelchair. Just because I can’t walk doesn’t mean the drug won’t benefit my other muscles. Your heart is a muscle too, and your lungs rely on critical muscles to function. By restricting access to this medicine, I’m being denied a drug that could help me live a longer life. It is not only immoral and unethical, but should be illegal.

The FDA approved the drug for all patients. As you can see in the video at the bottom of this petition, this drug doesn’t choose between people in and out of wheelchairs – so why does the insurance company? Clearly, this was an arbitrary decision or insurance companies are more concerned about their profits than the patients they cover.

I want more time to be able to go to school, hang out with my friends and live. This drug is my only chance.

We have to ensure that Excellus and all other insurance companies cover everyone who is eligible for this drug. If they deny me access, it could be your loved one on the other side of the insurance table someday.

Please sign my petition and urge your friends, family members and colleagues to share this as widely as possible. There’s still time for Excellus to cover treatments for patients, regardless of being in a wheelchair, with a life-threatening disease with no other options. BlueCross BlueShield groups in other states, such as WA, IL, and TX are providing coverage for ALL patients with my form of DMD.

Thank you for your support and, above all, thank you for helping me show that MY LIFE MATTERS! 

Sincerely,

Andrew Longwell

 

P.S. After you sign the petition (please do this first), check out this YouTube video https://youtu.be/0wAgfo41RCc

to see how the drug is clearly helping a young boy lift his arms and slow the progression of the disease.



Today: Andrew is counting on you

Andrew Longwell needs your help with “Excellus BlueCross BlueShield CEO Christopher C. Booth: I Have a Treatable Form of Duchenne Muscular Dystrophy. I Deserve to Live.”. Join Andrew and 8,475 supporters today.