Raising a Voice for Advanced Prostate Cancer

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By Jim O’Hara

Awareness of prostate cancer and early detection of the disease are increasing but most of the media attention ignores the fact that around 30,000 men in the United States died of this disease during 2005. Additionally, there are 48,000 men dealing with hormone refractory prostate cancer (HRPC). For these men, there are few treatment options available. Even treatments in the late stages of development offer little measure of hope. The outlook appears even darker when you consider the impending impact of the “baby-boomers”.

The combination of limited research money, low public awareness and an ultra-conservative approval process by the FDA has contributed to effectively shutting down the pipeline of FDA-approved drugs targeted for advanced prostate cancer where the need for new treatments is most dire. Clearly something should be done about these interrelated funding, public awareness, and drug approval limitations. And as the HIV/AIDS community has proved, something can be done. Recently, a promising step forward was made when leaders of several prostate cancer nonprofits convened in an unprecedented roundtable meeting to discuss opportunities for our community to better work together and to identify core issues in “advanced prostate cancer”.

The Advanced Prostate Cancer Advocacy Meeting, sponsored by an unrestricted grant from Abbott Oncology, was held February 23, 2006 in San Francisco before the 2006 Prostate Cancer Symposium. There were attendees from organizations including the Prostate Cancer Research Institute, UsTOO International, Prostate Cancer Foundation, The Prostate Net, National Alliance of State Prostate Cancer Coalitions, California Prostate Cancer Coalition, Prostate Cancer Coalition of Michigan, and American Prostate Health Initiative, plus prostate cancer experts Dr. Donald Coffey and Dr. Stephen Strum.

The meeting was structured to first listen to advocates for other diseases describe advocacy efforts that have significantly helped improve patient care. Marty Delaney and Brenda Lein of the HIV/AIDS advocacy organization Project Inform and Ellen Coleman of CancerCare discussed best practices and key achievements. They shared some key lessons learned in their advocacy movements with HIV/AIDS, breast cancer, lung cancer and multiple myeloma.

  • Organizations must work together in a coordinated effort and agree on specific direction. “The enemy is the disease, not each other.”
  • Partnerships are important, not only with each other, but also with government (NIH, NCI, FDA, Congress and the Administration), with academia, the pharmaceutical industry, the media and the public. Relationships must be developed with the key people to get results.
  • Advocacy requires sponsors to provide funds to support paid professionals, activism and media campaigns.
  • There is a need for activism to build grass roots support and gain media attention to the message and get it on the evening news.
  • Advanced PC patients and their caregivers must be convinced that they deserve to receive better options.

Our guest advocates also suggested ways to make prostate cancer advocacy successful:

  • Men with advanced prostate cancer and their loved ones must be heavily involved with prostate cancer advocacy and issues.
  • Advocates must be recruited and trained in both advocacy and the science of the disease. They must stay on top of the latest research to be credible.
  • Advocates must be members of the committees that review new developments “not at a (controlled) public microphone expressing concerns”.
  • Advocates must seek out opportunities to be heard at professional and scientific conferences.

Next we heard from a few of our own experts regarding current issues facing prostate cancer.

  • For men, prostate cancer remains second only to lung cancer in deaths and second to skin cancer in incidence (30,350 deaths and 232,090 new cases for 2005).
  • While media attention has increased, most of the stories, especially in the “big” media, focus on early detection and local treatment options. This gives the public the impression that prostate cancer is not a life-threatening illness. “The world does not even know that advanced prostate cancer exists.”
  • Older advanced prostate cancer patients tend to accept their disease and have proven to be poor advocates for their own cause, while men diagnosed at a younger age may keep their disease secret because it could put their careers in jeopardy.
  • There has not been a major new treatment modality for advanced prostate cancer in decades and there are few options to offer to men who fail to respond to androgen deprivation (hormone) therapy.

Drs. Strum and Coffey both addressed this last point. Dr. Strum reiterated the plea that he and Bill Blair made at the 2005 PCRI National Conference on Prostate Cancer that “there are a number of things (in development or being used for other cancers) that look very exciting but have not been made available to men with advanced prostate cancer”. Dr. Coffey forcefully concurred, stating that “We are vastly under-treating advanced prostate cancer. Let’s get all of the drugs that are out there for advanced cancers and try to find out on a group of patients, if there is anything here to give them hope.

Attendees passionately discussed the current “invisibility” of advanced prostate cancer patients, their lack of voice, and the relatively low media coverage the topic currently receives. This roundtable advocacy meeting was an important step toward presenting a more united front on the specific issues facing advanced prostate cancer patients. Attendees identified two priority issues:

  • Impacting FDA approval procedures that will lead to a meaningful change in treatments and tools available for advanced prostate cancer patients
  • Raising public and media awareness of the needs of advanced prostate cancer patients.

The organizations represented agreed to vigorously pursue these two issues. By far, the greatest task will be to energize the prostate cancer patient and caregiver community to carry this advocacy banner forward. If you feel a passion to join in Raising a Voice for Advanced Prostate Cancer, send an email with your name, address and phone number to: raiseavoice@pcri.org.