Get active and get involved!

Ever hear in the news, that the “FDA advisory committee has recommended (or not recommended) approval for a particular drug therapy”? The FDA typically follows those recommendations, but who is the FDA advisory committee? Certainly, the committee is made up of well-respected scientists and the like, but 15 years ago, cancer patient representatives got a boost in the arm; people with an interest in cancer got the ability to be active participants with full voting rights included!

Bolstered by the experience and success of HIV/AIDS patient representative program, the government added a cancer patient representative program.

Staff is located in the
Office of Special Health Issues.
Contact info:
Office of Special Health Issues
Phone: 301-796-8460
Email: OSHI@fda.hhs.gov
10903 New Hampshire Avenue, Bld 32, Room 5367
Silver Spring, MD 20993

Check out the site www.fda.gov. Then put in “cancer liaison” in the search bar at the top right. When I went to the site, the cancer liaison program was the first link.
Or go directly to the site at: http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/CancerLiaisonProgram/default.htm
The site is fairly user friendly, and chock full of information on a variety of topics including patient advocacy and drug development. You can download a pdf brochure
which explains the program and how to apply.
http://www.fda.gov/downloads/ForConsumers/ByAudience/ForPatientAdvocates/PatientInvolvement/UCM143432.pdf
Here’s a couple of quotes from actual patient representative that I found particulary astute.
Patients can offer a point of view that no one else on the committee can provide because we've had the experience to share what they haven't," says patient representative Martha Solonche, a five-year survivor of both uterine and ovarian cancer. Solonche believes that the "emotionally charged" nature of some of the issues is "all the more reason for someone with the disease to argue a point."
"One of the biggest hurdles at a committee meeting," says Sallie Forman, a patient representative who suffers from colon cancer, "is convincing the rest of the panel that the approval of a drug that may buy me three or four more years may also take away my quality of life. In other words, a drug that is so toxic to the system, but gives one more week of life, isn't worth it."
Solonche agrees. "No one on the panel could understand this. Only someone who's lived through constant side effects, every time they take a certain drug, can know what that's like."

Enjoy the site and you may be the next patient representative!