Raise A Voice Continues to Be Heard . . .

In the May 2007 issue of PCRI Insights, we reported on the efforts of Raise A Voice to appear before the March 31st FDA Advisory Committee meeting on behalf of advanced prostate cancer patients seeking to obtain the drug Provenge. As a continuum, and in response to the public outcry following the May 8 letter from the FDA to Dendreon (the manufacturer of Provenge) that delayed approval, Raise A Voice once again rose to the occasion.

On June 4, the PCRI’s Jan Manarite led a group of about 60 advocates in a march and rally on Capitol grounds in Washington, DC. In a spirit of unity, Raise A Voice was once again a representation of several organizations, and participants from 10 different states. Dr. Mark Moyad helped to inspire the event, and was the keynote speaker. Dr, Moyad spoke of his 38-year old cousin, whom he lost to breast cancer after she had run out of treatment options. He spoke of the need to provide options for people with diseases of all kinds, especially advanced prostate cancer.

Other speakers included Tom Farrington of Prostate Health Education Network (creator of www.provengenow.org, plus Tom Kirk and Jim Kiefert of UsTOO International. Jan Manarite opened and closed the rally displaying a sign from the Malecare organization showing the 3,500 signatures of supporters who responded to their online petition and a banner with a quote from Margaret Mead: “NEVER DOUBT that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

Meeting with FDA’s Dr. von Eschenbach

The rally was followed by a meeting with Dr. Andrew von Eschenbach, Commissioner of the FDA, along with several of his staff members. Joining Manarite, Farrington, Kiefert, Kirk, and Dr. Moyad, was Dr. Paul Schellhammer, president of the AUA. The discussion included Provenge, but also the FDA process of getting drugs to advanced PC patients, and the need for getting access sooner. The ideas that were exchanged there are still being pursued by both advocates and physicians.

This June 4 effort gained widespread media attention from television, radio, and print media. The electronic media included ABC World News Tonight with Charles Gibson, CNBC with Mike Huckman, and WTOP radio. The print media included the Seattle Times and the Wall Street Journal that quoted Raise A Voice as part of their coverage. Press coverage is a valuable asset in enabling issues such as Provenge and Satraplatin availability to be heard, and this coverage shows the power that determined groups such as Raise A Voice have as a community.

If you are interested in helping with the Raise A Voice effort, through donations or by volunteering any skills, please contact Jan Manarite, Florida Educational Facilitator for PCRI, at jmanarite@pcri.org or (239) 395-0995. 

Prostate Cancer Research Institute (PCRI)

Material provided by PCRI is intended for educational purposes for discussion with your physician and should not be considered as medical advice. Information and opinions expressed on this website are not an endorsement by PCRI for any treatment, product or service.