My Oral Testimony at the AAC Meeting Regarding Ampligen on December 20, 2012
My name is Jeannette.
I am very pleased to have this opportunity to address you and want to express my sincere thanks for your consideration of this critically important decision.
I have suffered with CFS for almost 7 years and was very fortunate to become a patient of Dr. Dan Peterson in Incline Village, Nevada and to begin Ampligen therapy 8 months ago.
Before I was stricken with this illness, I was a highly functioning international business attorney with a prominent international law firm working long hours and getting close to partnership.
That came to a screeching halt in 2006 when I became ill and unable function in my job and had to go out on disability. Since then, I have incessantly endeavored to find treatments that would allow me to lead a somewhat normal life and to enjoy my family with my husband, Ed, and my 2-year-old daughter, Aimee with whom I lived in California—just one mile form Stanford University—all to no avail.
As a result, Ed and I decided that Ampligen was the only realistic hope we had. As you can imagine, this was an agonizing decision, as it necessitates—due to the lack of FDA approval—my living in Incline Village, 235 miles away from Ed and Aimee, except for weekend visits every few weeks.
Despite this heart-wrenching separation, I feel we have made the right decision, as I have recovered a significant part of my lost functioning to the point of more frequently being able to enjoy my time with my family. Equally important, I can finally entertain hope for continued improvement rather than experience a steady deterioration of my condition. Ampligen has started to give Aimee her mother and Ed his wife back.
Despite the need to receive an infusion twice a week, I actually look forward to infusion days because I can feel the benefit of the drug. I implore you to consider my experience and that of many others who have benefitted tremendously from this drug and to give everybody in this long-suffering patient community hope for the future—for the first time.
There are no other drugs for CFS in the pipeline. If Ampligen doesn’t get approved, we are looking at years, maybe decades, of continued unspeakable suffering without any relief and without any hope. Not approving Ampligen would be devastating to hundreds of thousands of patients and their families.