Perspective on Pharma Support for Patient Advocacy Organizations

Last week Kaiser Health News (KHN) released a database called “Pre$cription for Power” that tracked pharmaceutical company donations made to patient advocacy groups, with an extensive accompanying article.  The database is an important collection of information and serves to enhance transparency about the relationship between the industry that gives us medicine and the patients who need it. Looking at the year 2015, the KHN story revealed that the amount of money pharmaceutical companies donated to patient advocacy organizations in nearly twice the amount they paid for lobbying services. 

However, the nature of the presentation, even by its name, clearly implies heavily that (1) the funding from pharmaceutical companies is solely tied to advocacy efforts, and (2) that a financial relationship between pharmaceutical funding and patient advocacy group necessarily compromises the integrity of the latter. That merits a focused look. 

As someone who worked for many years in two of the largest HIV/AIDS non-profit organizations in the U.S. during the very formative years in the 1980s and also in the 1990s, I was witness to the evolution in thinking regarding acceptance of pharmaceutical funding by a large HIV/AIDS patient advocacy organization. There was certainly debate, with some degree of passion on both sides. The ultimate question was whether acceptance of such funding would skew in any way the commitment to patient interests. In the end, the consensus on the part of most involved was that the acceptance of such funding would not be a conflict. In the accompanying article that announces the KHN database, HIV/AIDS organizations were singled out as a particularly potent force for advocacy that other patient groups sought to emulate. As I have often said, HIV organizations took the mold of healthcare advocacy, broke it, and recast it in their own image. The success of that advocacy changed the landscape for all kinds of patient organizations. 

But while effective at advocacy, HIV/AIDS organizations did much more.  It is important to note that while many patient organizations are effective advocates, they also provide a range of essential services. In fact, for many, service provision is the primary mission and they are often a lifeline for many patients, particularly in HIV.  In many cases, those services rely on philanthropy for survival. 

HIV services developed to fill the void that existed when the mainstream infrastructure failed. When healthcare professionals refused to attend people with AIDS in hospital rooms, when families turned family members away, when dentists refused to provide care, when landlords kicked people out, when people lost their jobs – it is a long list. There is still such a void in the spectrum of services today, though in other important ways. There are doctors who will not prescribe pre-exposure prophylaxis medications (PrEP) to patients. Many minority people at higher risk for HIV and many transgender people at higher risk are located in geographical areas where there is very little support or access to information. It is often pharmaceutical money that makes support where there otherwise would be none – support that can keep people infected from transmitting the virus and that can keep the uninfected from exposure. It is unlikely that HIV organizations are unique in this regard – funding from donors – including pharmaceutical donors – funds many key services for patients. 

The database provided in Pre$cription for Power provides total amounts, but actually does not parse out what portion of the donations made by pharmaceutical companies to patient advocacy organizations are for the funding of important programs and what actually goes to advocacy. By comparing the amount in donations to the amount spent in lobbying, there is an implication that the companies have purchased lobby services in these amounts from non-profits. Unless the dollars tracked in the database are known to be solely for advocacy projects, that would not be the case.

When it comes to advocacy, patient organizations often have much in common with industry and so the presence of lobby days, as noted in the Pre$scription for Power materials should not be much of a surprise. For example, NIH funding for research is in everyone’s best interest. If patient organizations did not receive any funding from pharmaceutical companies, they would still likely join forces in pursuit of that goal. Moreover, in reviewing the database, there are examples of organizations who have received funding from pharmaceutical companies who have been active critics and in some cases, litigants vis a vis pharmaceutical companies and interests. In other words, the mere presence of financial support does not, by itself, serve as notice that an organization’s independence has been compromised. The dollars are not damned. 

Finally, donor support comes to non-profit patient organizations in many ways. It can take the form of support for fundraising events such as walk-a-thons, sponsorship of tables at dinners, or the result of competitive grants, and as noted above, not exclusive to advocacy. It is possible that for some organizations, the level of philanthropy may be a factor in their approach to advocacy, but it cannot and should not be assumed. It is a question that deserves an answer – patients are deserving of that. But as the assessment of that question should be balanced. The patients who rely on the services that are often provided by these donations deserve that as well.  

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1 Response to Perspective on Pharma Support for Patient Advocacy Organizations

  1. Mary Curtin Creaser says:

    As soon as I read the KHN report , I was hoping you would share an analysis, your perspective. Excellent piece, Mark. I’d love to see you and a KHN report author on a panel together. – Mary

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