United HealthCare Discriminates Against Disabled Youth

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I’m writing today with a simple message: We cannot allow insurers or society to write people off or let them die simply because they cannot walk. If you agree with me, I ask that you sign my petition below. 

United Healthcare is about to enforce a decision to deny insurance coverage to me and my brother for a treatment for Duchenne muscular dystrophy. We have both been receiving the therapy, called Exondys 51, for over a year. United Healthcare is basing this decision on the fact that we can’t walk. Ambulation, or the ability to walk, is typically the first major ability that young people with Duchenne lose, but we go on to lose more important functions like the abilities to feed ourselves, clean ourselves, cough, and breathe. We have written this petition to protest this decision and shed some light on why our coverage should be approved and continued.

PLEASE HELP ME STAND UP AGAINST UNITED.

Many young men like us who can’t walk have been receiving Exondys 51 for over a year now, some much longer. Based on what we know from our individual disease progression prior to treatment, and from what we know of the very well documented natural history of Duchenne, the progression of disease for those of us on Exondys 51 has dramatically slowed or stopped. Most of us are stable during a time in which great decline would be expected. Specifically, many of us have maintained our upper body strength and importantly, our pulmonary function has stabilized. Some of the young guys have regained abilities like transferring by themselves in and out of their wheelchairs and getting themselves out of bed. We believe these things are even more important than the ability to walk. We believe these things are deserving of insurance coverage!

Exondys 51 was approved by the FDA in September 2016. In announcing the decision, the FDA said in a press release that accelerated approval “provides for the approval of drugs that treat serious or life-threatening diseases and generally provide a meaningful advantage over existing treatments. Approval under this pathway can be based on adequate and well-controlled studies showing the drug has an effect on a surrogate endpoint that is reasonably likely to predict clinical benefit to patients (how a patient feels or functions or whether they survive). This pathway provides earlier patient access to promising new drugs while the company conducts clinical trials to verify the predicted clinical benefit.”

Accelerated approval does not mean experimental and it does not allow for the exclusion of eligible patients. We are asking United Healthcare to reverse this decision and approve coverage for us and all of the others who could benefit from this breakthrough therapy.

Denying a disease modifying drug because a patient can’t walk is not acceptable in other diseases and it cannot be acceptable in our case either. We are planning our futures and we want to live. We’ve been on this drug for over a year and we know it is helping us. We have improved upper body function and we have better torso control. We’ve had a drastic improvement in our quality of life. United Healthcare, please don’t take these gains away and scupper the chance that we’ll live longer and healthier lives.

Thank you,

Jacob, Liam, John and Melanie Kelly



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