Friday, February 1, 2013

My letter to the FDA regarding Ampligen

Dear Sir or Madam:
As someone who has lived with ME for 25 years this January, I ask you to please approve Ampligen for a subset of severely disabled patients. My experience with Ampligen was challenging, but worth it. Unfortunately, because I had to pay for the cost of receiving this drug and I suffered from other neurological complications, I was not able to continue on Ampligen. Nevertheless, I am extremely grateful that I had the chance to benefit from the many postive effects of Ampligen for over seven years. After several surgeries to remove non-essential organs my doctor felt Ampligen was my only hope, if we were going to stop the destructive disease progression.
By the age of 21, I was wheelchair-bound and unable to feed, bathe or clothe myself most days because of my chronic disease. I was bedridden and cognitively disabled - unable to read without being really confused. I had to have someone take care of me 24 hours a day, 7 days a week until I began taking Ampligen. It took months before I began to respond but once I started to get well again the improvements in my health were life changing. I was able to take care of my most basic needs once more and to begin a therapeutic program of chair yoga, and get to the dinner table most evenings. Within a year, I was driving to and from the grocery store and using a cart to get around. My most severe symptoms of sinus node sickness and gastro paresis improved significantly, so much so, that I no longer had to consider the pacemakers that specialists had recommended. Within two years, I enrolled in a yoga program to educate myself about therapeutic yoga to help others. In my third year, I began teaching gentle yoga two days a week. I was able to travel on an airplane for the first time and to see friends and family I hadn't seen in years. I made a decision to go off of Ampligen for an extended holiday to see if I could stay in remission without the drug and sadly experienced a total relapse of my symptoms. Once I began again, the drug worked quicker the second time around. I began to see improvement cognitively and physically within months.
As with many drugs, there were some downfalls to being on Ampligen. I had to be infused two times a week at a location one hour away from where I lived. It was a process - getting IV fluids days before my infusions. The intial side effects were difficult to handle at first, but I was blessed to have a doctor who was willing to help me with them. Even with these disadvantages, Ampligen gave me a glimpse of what my life could be without severe ME. I believe that Ampligen treatments may have saved my life.
Ampligen is not a cure, but for those who respond to its healing effects it is a life line. These patients deserve a chance at some quality of life. Like me, they have experienced profound improvements in their cognitive and physical abilities. Ampligen can be a life saving drug for others who suffer from severe ME/CFS.
Thank you for allowing me to share my story with you. I hope for the sake of many patients, you will consider approving Ampligen for severely ill patients while other more accessible drugs are being developed.

Former Ampligen Patient

1 comment:

Anonymous said...

Thank you for this blog.