What do you do when told there is a treatment that could put you into remission, but your health insurance denies it because there “isn’t enough clinical evidence”?
There will never be enough clinical evidence for my rare disease because there are not enough people affected by the condition to make its research a primary priority. There are not many clinical trials for treatments that could help those of us with refractory myasthenia gravis.
I have been admitted for at least a week every month for the past two years. I have a port and permcath inserted. I take a handful of pills with every meal. There are often times that my body just gives up on me, leaving me face-planted on the walkway, choking on my food or dropping my groceries. I get stuck on the floor, unable to get up without assistance.
My doctors have fought tooth and nail to keep me alive, and are constantly on the hunt for something new to try. We came across an article about stem cell transplant and realized that there is hope. After talking to the professor in neurology who oversees my case, she admitted that such a transplant could be the only way I could reclaim my former, higher quality of life.
We got letters from transplant specialists, sent all medical information possible, and included medical studies proving the efficacy of stem cell transplant for those with refractory myasthenia gravis. None of it was enough for my insurance.
Which would you say is better? Not having any treatment, or having a treatment option but being denied it? My heart is breaking. I don’t know where to turn or what more I can do.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.