Voices Across America

Cluster headaches and CMS undermines treatment

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State: Indiana
Congressional District: IN09



Issues and Challenges

Anna has encountered: Copay Issues, Insurance Issues

My Story

I have experienced chronic cluster headache attacks since 2017. The attacks feel like I have a hornet stuck in my eye socket and stings me over and over again for about 2 hours straight. My eye waters, my nose runs and I want to rip my eye out hoping that will make the pain stop. However, it won't. I have a complex neurological disease where these attacks happen 1-4 times per day every day if I do not have preventative medication. They happen for 15 min to 3 hours each time, unless I have an abortive medication to stop them. The best abortive for these attacks is 100% high flow oxygen using 15+lpm with a non-rebreather mask. With this set up I can stop an attack in five minutes.

However, CMS has decided to revoke coverage for this protocol. This happened several years ago leaving patients without a safe abortive. While sumatriptan injections can work, they can increase severity and quantity of attacks and it has side effects. I cannot take triptans at all because of severe side effects.

From 2017 until mid-2020, I had no abortive for these attacks which are known as the most painful condition known to man. The suicide rate is 20 times higher in people who experience them. Because CMS refuses to cover, oxygen companies are trying to create their own rules leaving patients with no protection. When I finally convinced my doctor to allow me to fight to get the oxygen tanks, it still took me 6 months to find an oxygen company who would fill my prescription as written. Other companies wanted to force me to rent expensive equipment that I cannot use in order for me to be financially worth their trouble. I do have oxygen tanks now, however I have to pay cash for my tanks with no insurance coverage. So long as my preventative works and I have less attacks, I can afford it. One $10 tank will stop only 2 attacks. As you can see, this can get expensive quickly.

My Motivation and Inspiration

I experience chronic cluster attacks. My grandpa did as well. He was a welder and had access to oxygen but never knew that could stop his attacks! I want patients to be informed as to treatment options. I also have a strong passion in regards to how devastating this disease is not only physically but the PTSD of the next attack takes a huge emotional toll as well. With suicide rates that are 20 times higher, and experiencing the emotional impact myself, I want to help others know they are not alone!

National Suicide Prevention Lifeline: 1-800-273-8255

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