Summary
This article discusses the potential risks and conflicts of interest associated with patient advocacy groups accepting funding from pharmaceutical companies, which can influence research, guidelines, and regulatory decisions in healthcare.
Key points
- Patient advocacy groups play a powerful role in health care, but they also face risks of bias when accepting money from companies seeking to expand markets for their new tests and treatments.
- Industry funding of clinical trials has been associated with more favorable findings.
- During the recent EpiPen scandal, the manufacturer-sponsored advocacy groups were largely silent about price gouging.
- A drug company–funded “patient advocacy” campaign called “Even the Score” helped win regulatory approval for the thrice-rejected controversial female sex drug flibanserin.
- The National Osteoporosis Foundation accepts funds from industry, and mandatory transparency rules reveal that a majority of the medical leadership received a total of over $450 000 in payments in 2015, including for research projects.
Industry funding strengthens and extends the much-needed patient voice in health care, but at what cost? During the recent EpiPen scandal, the manufacturer-sponsored advocacy groups were largely silent about price gouging.1 (opens in a new tab) Last year a drug company–funded “patient advocacy” campaign called “Even the Score” helped win regulatory approval for the thrice-rejected controversial female sex drug flibanserin.2 (opens in a new tab) And not only does the National Osteoporosis Foundation accept funds from industry, mandatory transparency rules reveal that a majority of the medical leadership received a total of over $450 000 in payments in 2015, including for research projects.3 (opens in a new tab),4 (opens in a new tab) Patient advocacy groups play an increasingly powerful role in health care, sponsoring research, producing or promoting guidelines, driving media coverage, influencing regulatory decisions, promoting certain interventions, and shaping the way we think about disease. Just as the industry funding of clinical trials has been associated with more favorable findings,5 (opens in a new tab) patient groups also face risks of bias when accepting money from companies seeking to expand markets for their new tests and treatments.