The Abigail Alliance gets its name from the daughter of Mr. Burroughs. Abigail passed away at age 21 after being denied access to one of those drugs.
The fight goes on as the Abigail Alliance seeks to push the Patient Choice Act through Congress. This legislation would allow compassionate access for terminally ill patients to drugs that have passed Phase I safety review by the FDA. The Abigail Alliance also presses for FDA regulatory science catch-up with the rapidly expanding knowledge of disease biology.
Other organizations are making equally courageous efforts in specialized areas.
Two of these are Patients for Stem Cells and ALS- Treat Us Now.
According to Patients for Stem Cells, “Accelerated access programs are needed in the U.S., similar to what Europe and Japan are already adopting. Starting with difficult diseases for which there are few medical options, like ALS, Parkinson’s, Alzheimer’s, and Multiple Sclerosis.”
ALS- Treat Us Now seeks “to assure compassionate access for ALS patients to treatments that have passed the FDA’s Phase I safety standards AND have demonstrated in Phase II trials the ability to slow the progression of or cure ALS.”
Imagine the anguish of observing the progression of your neurodegenerative disease when safe drugs have been developed and proven to slow that progression.
The fact that the FDA needs a little more time to conduct Phase III trials and finish the paperwork would be of little comfort. This is another area that clearly requires Congress to act.
We must no longer allow American citizens to die of government bureaucracy.