The Lost Stem Cell Transplant Hope
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.
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Comments
Ali Shah
Waiting for the stem cell transplant treatment, Does there is any information regarding this that when it will be available for all the patients of M.G,
Qamar Alsabi
I don't know for how Long u had the MG. I had it since I was 9 years old and I am now 25 years. I am graduate student, wife, and mother. I had the port and I got PE where I was about to die. anyway, longtime ago (8 years ago) I talked with my doctor regard stem cell, she did not recommend since it is has a big risk, she said this is would be the last option we will consider ( if the patient about to die). I don't know if the rest lower with time. absolutely I will bring stem cell in my next appointment.
I just want to tell you that you will get better with time.