TO: Perry Cohen
Since my last letter to you, I asked a former Medical Director of a large HMO
for ideas on this subject.
1) He agreed that it might be good to have one or more PWP advocates on the
approval board at FDA for our meds and suggested as follows:
A) Working thru the drug companies that are involved in the specific
testing. (Especially those with political clout)
B) Letters (to the person at FDA who controls the purse strings) from PWP
Support Groups around the country asking for a PWP advocate. Copies of their
letters should go to their Congressman and Senators.
C) A request from our PWP National Organizations on the same vein.
He also thought that we should stress the appointment would be from someone
with a degree of leadership quality and reasonable acumen.
You might want to kick this around with Robin Elliott at PDF for a refinement
of the concept. In the past, I have found him reachable, knowledgeable and
agreeable to work with.
I await your word as to any activity I can do to help.
Good Luck
Sid Levin
PS have you had any feedback from the FDA people you work with?
