Are advocacy organizations influenced by funding from pharmaceutical companies?

A new commentary posted today on the Medscape web site addresses financial support for the activities of patient advocacy organizations by biopharmaceutical companies. This is a topic about which Prostate Cancer International and The “New” Prostate Cancer InfoLink are both acutely sensitive.

The article on the Medscape web site (by Mulcahy) is based on a letter to the editor (entitled Industry funding of cancer patient advocacy organizations) by Abola and Prasad in a recent issue of Mayo Clinic Proceedings.

Abola and Prasad correctly observe that the degree of funding of cancer patient advocacy organizations by the biopharmaceutical industry is significant, and that this can lead to conflicts of interest. They also note that some of the organizations that they identified as receiving funding from the biopharmaceutical industry provide no information about the nature or the amount of that funding on the organization’s web site, and, in the Medscape article, Dr. Prasad is quoted as stating that:

He who pays the piper calls the tune, and patient advocacy organizations are singing a tune of “approve every toxic, marginal drug, and then we will be very quiet about how much is charged.” I worry that this tune is not in patient’s best interests.

Prostate Cancer International is not listed among the nine prostate cancer patient organizations identified by Abola and Prasad in their letter to the editor of Mayo Clinic Proceedings (and reprinted in the Medscape article). The reason for this is simple. Until about a month ago, we had never sought funding for what we do from pharmaceutical companies or anyone else either. If it was offered, we have accepted funding in the past, including one joint grant from two pharmaceutical companies, but the total amount of that funding over the past 8 years has been significantly less than $15,000 in total.

However, as of about a month ago we have started to seek commercial and individual donations to support some of our activities, and so we want to be extremely clear about how we intend to handle such funds, as follows:

  • Detailed information about all revenue of Prostate Cancer International will always be available on the main web site of the organization, and will invariably include the names of commercial donors, the amount donated, and the event or activity for which the funds were donated.
  • No monies will be accepted in return for the promotion of any form of commercial product by Prostate Cancer International or on its web sites.
  • No advertising of any healthcare products will ever occur on this web site or any other web site of Prostate Cancer International.
  • While there may well come an occasion on which Prostate Cancer International advocates for the approval of a new drug that may have limited clinical value, we will do this based on data that give reasonable support for such an approval and not because we have received funding from the manufacturer. (To date, however, we have never actively advocated for the approval of any specific drug for the treatment of prostate cancer. At most we have expressed a hope that individual products would be approved based on the available data.)
  • We will continue to speak out about the unsustainable pricing levels of recently approved biopharmaceutical and other healthcare-related products and the fact that the approval of such products is pointless if patients can’t afford to be treated with them.

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, 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!

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