Patient advocacy groups are often perceived as an independent voice for the patient’s perspective. A recent Senate report shows that opioid manufacturers paid more than $10 million to patient groups that were in theory grass roots organizations promoting a patient agenda. The Senate investigators found that these groups often supported increased opioid use, a message favorable to the drug companies’ interests. The report is titled: “Exposing the Financial Ties Between Opioid Manufacturers and Third Party Advocacy Groups.”
According to Senator Claire McCaskill, who released the report,
“These financial relationships were insidious, lacked transparency, and are one of many factors that have resulted in arguably the most deadly drug epidemic in American history.”
Purdue Pharma, maker of Oxycontin, was one of the biggest donors. Professional medical societies were also recipients of pharma money.
Pharmaceutical Manufacturers Supporting Patient Groups:
This is not the first time patient groups and nonprofit advocacy organizations have been called out for accepting money from the pharmaceutical industry. Last year a report in The New England Journal of Medicine showed that 83 percent of 104 patient-advocacy organizations had received drug company support. The title of the article was:
When people think of nonprofit patient-advocacy groups they often assume that these independent organizations are working tirelessly to overcome a particular disease or make life better for patients in need. This article reveals that industry support is 1) widespread, 2) conflicts of interest are widespread 3) Disclosure practices are limited and 4) self-regulation of conflicts are poor.
Which Patient Groups Are Affected?
Some of the most common and worrisome conditions have been supported by industry money. They include:
Diseases Targeted for Industry Money
- Nervous system
- Heart or lung
- Mental health
We’re talking big bucks! According to the New England Journal of Medicine review:
“Given that donation amounts were typically reported in ranges, it is impossible in most cases to provide precise estimates of the amount of industry support that patient-advocacy organizations received. Of the 59 organizations that published the amounts of donations, 23 (39%) reported receiving at least $1 million annually from industry donations; 13 (22%) reported receiving less than $1 million; and 23 (39%) reported information that did not allow a determination of whether industry donations were less than $1 million or at least $1 million.”
A completely different research group published similar findings in JAMA (March, 2017). The authors noted:
“This survey study found that 67% of a national sample of patient advocacy organizations, virtually all of which were not for profit, reported receiving funding from for-profit companies. Twelve percent received more than half of their funding from industry; a median proportion of 45% of industry funding was derived from the pharmaceutical, device, and/or biotechnology sectors.”
People’s Pharmacy Perspective:
Why should you care where patient groups get their money? We think conflict of interest is always a problem. If you have watched the olympics you want the referees to be absolutely impartial. It would be outrageous if one team had any influence over the judgement of the people overseeing a hockey game, for example.
Most people assume that patient advocacy organizations for heart disease or cancer are totally independent. People give money to such patient groups in the hopes that they will advance research, health policy and education in an objective way. They do not think that the boards of these groups would be infiltrated by industry representatives or that the organizations would become dependent on the largesse of drug companies. Sadly, that is not the case.
We agree with the JAMA study that concluded:
“Financial relationships between PAOs [patient advocacy organizations] and industry demand effective steps to ensure that these groups serve their constituents’ interests while minimizing risks of undue influence and bias. Given the growing ability of PAOs to influence health care policy and practice, their financial practices and safeguards demand the same degree of scrutiny applied to other key actors in the health care landscape.”
What do you think? Share your opinion about conflicts of interest in the comment section below.