PROSTATE CANCER patient advocacy organizations bought off by funding from pharmaceutical companies?

Study: Cancer Patient Advocates Like Pharma Money

Overall, there is a "sizable alliance" going on between these two entities, say the authors, Matthew Abola, from Case Western Reserve University in Cleveland, Ohio, and Vinay Prasad, MD, an oncologist at the Knight Cancer Center at the Oregon Health Science University, Portland.

Their new study was published in the November issue of the Mayo Clinic Proceedings.

The authors reviewed the websites of the various PAOs and recorded all reported biopharma sponsors.

They found extensive ties, which is compromising, suggested Dr Prasad.

"The one issue that patient advocates are most silent about is the crushing cost of cancer drugs," he told Medscape Medical News. "Advocating for drug approval means nothing if patients cannot afford the medication."

Industry Funding of Cancer Patient Advocacy Organizations - Mayo Clinic Proceedings
Cancer patient advocacy organizations (PAOs) often demand faster drug approval and easier access to cancer medications with uncertain benefits and harms.1 Previous research has found that a sizable percentage of PAOs across all disease types receive funding from the biopharmaceutical industry2, 3; as such, the independence of such groups has been questioned.4

To our knowledge, however, there has been no research specifically focused on the funding of cancer PAOs. These groups have influence on the regulation of cancer drugs, speaking on behalf of patients with cancer. The PAOs have supported recent legislation, including the 21st Century Cures bill and so-called Right to Try laws. For this reason, we sought to characterize declared sources of funding for cancer PAOs.

Patient Advocacy Organizations for Prostate Cancer Recommended by the National Comprehensive Cancer Center

Organization	Biopharmaceutical sponsorship (year)	Pharmaceutical sponsors (No.)

	Malecare	Yes	6
	National Alliance of State Prostate Cancer Coalitions	Yes	6
	Prostate Cancer Foundation	Yes (2014)	10
	Prostate Cancer International	Not reported
	Prostate Conditions Education Council	Yes	7
	California Prostate Cancer Coalition	Not reported
	Prostate Health Education Network Inc	Yes	9
	Us TOO International Inc	Yes	13
	ZERO - The End of Prostate Cancer	Yes (2014)	14

Are advocacy organizations influenced by funding from pharmaceutical companies? | THE "NEW" PROSTATE CANCER INFOLINK


It is a sad fact of life that there is only so much one can do today without significant funding to support the activities of any patient advocacy organization. However, it is also true that any patient advocacy organization that is willing to accept funding from companies with a related commercial interest (in prostate cancer in our case) should make the effort to be excruciatingly transparent about the sources of its funding and how it manages the use of that money.

We would note that certain comments in the article by Abola and Prasad strike us as being unfortunate generalizations. For example, Prostate Cancer International has never supported either the 21st Century Cures bill currently before Congress [21st Century Cures Act: Pork Or Promise?], nor have we supported so-called “Right to Try” laws mentioned by Abola and Prasad. These types of legislation have, in our view, been overly influenced by commercial interests and commonly contain few if any appropriate protections for patients.

On the other hand, we believe it is entirely appropriate that Abola and Prasad have raised this issue and documented their findings. We would encourage them to do the same or a similar analysis of the commercial support provided to most of the large, not-for-profit healthcare institutions across America. Identifying the commercial support received by those organizations (along with the inevitable conflicts of interest) is equally challenging!

References/Background:

• Health Advocacy Organizations and the Pharmaceutical Industry: An Analysis of Disclosure Practices
• Prostate Cancer—Patient Version - National Cancer Institute 
• Major US-based prostate cancer web sites and organizations | THE "NEW" PROSTATE CANCER INFOLINK 
•  Online Support Group for Prostate Cancer Survivors
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