Voices Across America

It’s…frustrating. I’ve now got to pay large bills myself

mountain avatar


State: Virginia
Congressional District: VA09


Rare Disease

Issues and Challenges

Nathan has encountered: Insurance Issues

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!

Share This Story

Find More Stories

Browse the map or filter by:

Click on pins to view stories.


Get the most from every Story

Find A Compelling Patient Story

Share it on social media.

Share Your Story On Our Network

Share your insights, challenges and what keeps you going.