April 1, UnitedHealthCare Will Be Handing Death Sentences to Muscular Dystrophy Patients

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My youngest child, Steve, was diagnosed with a rare form of Duchenne muscular dystrophy when he was 3.5 years old. The disease causes the skeletal muscles used for movement to degenerate. Steve lost his ability to walk, and now he’s confined to a wheelchair for the rest of his life. Steve absolutely loves sports! He played adaptive bowling, soccer, floor hockey and softball. He is a great fan now, and follows all Minnesota teams, even going to games when he is able. Steve has been declining steadily through the years, Duchenne is a relentless disease and there have been no treatments for it until now.

 I was so devastated when I learned of his diagnosis. Over time, his condition has deteriorated. However, he can still get out of the house on field trips and to attend sporting events. We want to preserve this ability however possible. Imagine if you couldn’t do these things.

 A new drug, Exondys 51, was approved by the FDA last year. And I felt a sense of hope in my heart. The treatment helps his body make dystrophin. His muscles aren’t able to function without it.

 Steve had his first infusion March 8th, and then we were devastated to find out that UnitedHealthCare was pulling the rug out from under him. As of April 1, the company announced they will no longer cover the treatment for Steve and other patients who are dependent on wheelchairs, a total reversal from their initial policy that covered patients. For no reason, they have gone back on their word.

This is beyond unfair, this is discrimination.

 WE HAVE UNTIL APRIL 1 TO HELP STEVE. PLEASE SIGN MY PETITION ON BEHALF OF HIM AND EVERYONE SUFFERING FROM THIS RARE TYPE OF DUCHENNE MUSCULAR DYSTROPHY.  

 UnitedHealthCare must be held accountable for their decisions. This drug must be provided to all who need it.

 Please share this petition and stand with us as we fight for our children’s lives. We can help over 1,500 people who have Duchenne muscular dystrophy.

 

I appreciate you supporting Steve. He doesn’t deserve what United is doing to him.

Sincerely,

Steves mom Lori

 



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