Re: Industry links with patient organisations Good intentions and voluntary codes are not enough
Taylor and Denegri (1) are correct that surveys showing the prevalence of pharma funding in patient groups fall short of demonstrating that these groups do not represent the interests of patients. They are also correct that such collaborations are widespread among physicians, medical researchers, guideline writers, and other actors in the health sector. “Everybody’s doing it” is a weak moral justification, however, and unacceptable for a sector that identifies its core values as scientific and ethical.
Two questions are critical in assessing whether pharma funding of patient groups is a defensible practice. First, do such groups publicly advocate for policies favourable to the industry but detrimental to patients’ interests? Second, do they remain silent when the industry promotes policies contrary to patients’ interests? The available evidence is spotty but suggests the answer to both questions is yes. Among the former are campaigns in which patient advocacy groups argue to have drugs approved based on limited evidence (2,3); to have costly new drugs of uncertain or marginal benefit put on insurance formularies (4); to strengthen intellectual property rights (5), and to obstruct transparency in drug trials (6). In each instance, these policies are, if not clearly contrary to patients’ interests’, at least debatable.
Recent headlines point to the failure of pharma funded groups to protest drug prices that are ethically unjustified, unaffordable for many, and unsustainable from a systems perspective (7). Other issues that put patients’ lives in danger merit critical attention from patients, such as the many practices that undermine the clinical trials system (8). If pharma funded patient groups are protesting ghostwritten articles, surrogate end-points, placebo-controlled trials, trials ended too soon or carried on too long to provide answers, and reports that overemphasize benefits and under-report risks, they are doing so quietly.
The examples cited may be unfortunate exceptions to a wider pattern of exemplary advocacy. I argue otherwise (9,10), Rather, despite good intentions, a perfect storm of financial and political factors have created a culture in which most patient organizations now see their interests through the same lens as their corporate funders. Those prepared to critique the for-profit basis on which the industry rests are underfunded and outnumbered at consultations with drug regulators, if they are heard at all (11). Far from solving the problem, lofty-sounding codes for self-regulation developed in concert with industry take us further into Humpty Dumpty land, where words mean exactly what the parties bound by them want them to mean.
1. Taylor J, Denegri S. Industry links with patient organisations. BMJ 2017;356:j1251.
2. Woloshin S, and Schwartz L. US Food and Drug Administration approval of flibanserin: Even the Score does not add up. JAMA Internal Medicine 2016;176, 4:439-442. doi: 10.1001/jamainternmed.2016.0073
3. Davis C, Abraham, J. 2013. Unhealthy Pharmaceutical Regulation: Innovation, Politics and Promissory Science New York: Palgrave Macmillan.
4. Hughes D, Williams-Jones B. Coalition Priorité Cancer and the Pharmaceutical Industry in Quebec: Conflicts of interest in the Reimbursement of Expensive Cancer Drugs? Healthcare Policy 2013;9,1: 52-64.
5. Wibulpolprasert S, Moosa S, Satyanarayana K., Samarage S and Tangcharoensathien V. WHO’s Web-Based Public Hearings: Hijacked by Pharma? Lancet November 24, 2007, 370:1754.
6. Sample I. Big pharma mobilizing patients in battle over drugs trials data. The Guardian, July 19, 2013. https://www.theguardian.com/business/2013/jul/21/big-pharma-secret-drugs...
7. Thomas K. “Furor Over Drug Prices Puts Patient Advocacy Groups in Bind.” New York Times (September 27, 2016). https://www.nytimes.com/2016/09/28/business/furor-over-drug-prices-puts-...
8. Goldacre B. Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients. New York: Faber and Faber; 2012.
9. Batt S. A Community Fractured: Canada’s breast cancer movement, pharmaceutical company funding, and science-related advocacy. In The Public Shaping of Medical Research: Patient associations, health movements and biomedicine Wehling P, Viehöver W and Koenen S (eds.), 132-150. London: Routledge; 2015.
10. Batt S. Health Advocacy, Inc.: How Pharmaceutical Funding Changed the Breast Cancer Movement. Vancouver: UBC Press (forthcoming 2017).
11. Hilzenrath DS. In FDA meetings, “voice” of the patient often funded by drug companies. Washington DC: Project on Government Oversight. December 1, 2016. http://www.pogo.org/our-work/reports/2016/in-fda-meetings-voice-of-the-p...
Competing interests: No competing interests