Why Can't I Afford the Treatment for my Rare Disease?

My name is Jessie McQuillen, and I have a rare disease called Hereditary Hemorrhagic Telangiectasia (HHT).  I was born with HHT and lost my mother Debbie Beaver from the same disease in October of 2011. Having a rare disease means there are few people with it, and as a result many doctors have little to no knowledge of the disease, how to diagnose it, or how to treat it. 

After losing my mother at the age of 58, I was very sad and struggled with anger that I lost her for this reason. Her life mattered to me and many others. Everyone’s life matters. The fact that you have a rare disease should not make your treatment less important or less accessible than the treatment of a more common disease. At some point in my journey I decided to turn my anger into action. I joined many others in our community and became an advocate to change the way we approach rare diseases. I would like to encourage others to speak out and make their voices heard. We all need to encourage and support change. 

I struggle with nosebleeds on a daily basis. I was excited to find a drug that will shrink the blood vessels in my nose to decrease the amount of blood I lose. The drug is mixed with a saline solution which is put in a nasal spray bottle to apply to the areas that bleed. This is good news right? Well, like many other rare disease treatments, my drug is extremely expensive. Most rare disease drugs are not covered by standard health insurance plans. My drug is not covered by insurance for the treatment ofHHT because there are still clinical trials going on to see if it’s safe even though it is approved for the treatment of cancer. So, it is only good news if you can afford $1,000 for one small bottle! People are bleeding to death because they can’t afford it! I think trials for test drugs are way too long. People do not live long enough to see the ends of these trials, they need help now! 

I will end with this. Last night I was telling my daughter about the Articles of Confederation which was our nation’s first constitution in 1777. This piece of paper served as a symbol of change because they knew there was a better way. People fought and died for this change and won! I hope I inspire one person who reads this to fight for the kind of change that will impact others in a positive way.    

Jessie McQuillen is an employee at Vencore and is a patient voice for Rare Diseases.