[phil]

You are an Activist , like us - we started with a Petition , but realized we needed more. So we found like-minded Stage IV Activists on these Boards. especially Inspire Advanced BC Community . and then put up a FB grp to publicize our Petition. 3 other Stage IV survivors spoke with us at a public rally . Outside our local state capitol city hall ( Boston ) . we didn't get press coveragethat time . even though we had goten personal tv. newspaper coverage of out journey to Wash. D.C. to get the drug thru exp. access. So we then had a Picket line outside the international Bio convention , fortuitously also in Boston that yr. DC, our nat.l Capitol is far away. Picketing much more effective. so get a few Stage IV survivors - go to Press. and with your families , friends pick the closest , biggest govt building or pharma office. announce press release and demonstrate . it is exhilirating. we had our Congr. rep and Senators call the co. and our FDA . have your pols call the co. , and govt agency heads. put them on notice
don't let non - activists dissuade you . many , even survivors , have un-conscious biases - often against " big, bad " pharma, or some against Big Bureaucratic Govt agencies . or for one or the other . the System Is what it is for now - most late phase II, III research is done by private co.'s - but both they and govt should be more responsive to stage iv citizens sacrifices, rights. we say " we are not anti - govt or anti - pharma .. we are PRO Stage IV Pt. ! " and " its not personal , their policies are in fact too rigid, slow, impersonal - to the point of killing us ! so we must Speak Up. Good Luck and God Bless !