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My Patient Story

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Nathan

State: Virginia
Congressional District: VA 9

Diseases

Rare Disease

Issues and Challenges

Nathan has encountered: Insurance Coverage is Inadequate, Out of Pocket Costs

My Story

I’ve been receiving Botox treatment for overactive salivary glands (related to my muscular dystrophy) for over a year now. The injections are given every few months to dramatically improve my speech and for the overall benefit of my breathing. My insurance company covered my first four treatments, but then I received a letter this summer stating that, upon further review, my third dose of Botox (10/30/19) wouldn’t be covered. When I called the insurance company, they said they would check on everything. The second review led to a denial of my 5/27/20 claim for Botox, too. They cover the doctor’s bill but not the actual medication.

I’m ineligible for the Botox reimbursement program because salivary gland injections are an off-label use. It’s…frustrating. I’ve now got to pay large bills myself.

My Motivation and Inspiration

I’m motivated to make healthcare better for people with rare diseases!

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