At a time when drug company lobbyists are widely vilified as icons of avarice, patient advocacy groups still wear the white hats.
But those organizations, which promote cures for every type of cancer and hundreds more diseases, have come under criticism lately for favoring their drug company funders in contests on Capitol Hill.
In one case, a diabetes group accepted money from food companies and played down the health risks from their high-sugar products; in another case, a mental health association, reliant on drug company dollars, opted to keep quiet about the soaring prices of its antidepressants. And many of the patient advocacy groups pushing for passage of the 21st Century Cures Act, which consumer groups argue rolls back patient protection, are funded in large part by pharmaceutical firms.
“The public should be concerned about this for many reasons,” said Jonathan H. Marks, director of the bioethics program at Pennsylvania State University. “One of the most important is that patient advocacy groups have credibility with policymakers — as corporate donors are well aware. Policymakers tend to assume that these organizations are acting in the interests of patients, or public health more broadly.”
But, said Marks, this is not always the case when the groups are reliant on drug or device industry donations — a point not often discussed when they lobby the Food and Drug Administration to speed new drugs to market, participate in National Institutes of Health panels, bring patients to testify before Congress, or advise patients on courses of treatment.
A study published Tuesday in JAMA Internal Medicine offers evidence of the ways in which patient advocacy organizations, or PAOs, rely on industry dollars.
The research, led by Susannah Rose of the Cleveland Clinic, shows that PAOs receive industry funding more often than previously believed. Some of the groups’ leaders, responding to a confidential survey, also acknowledged donor pressure to take policy positions that are best for the donors. Others said they doubted their own level of independence.
Rose, director of research in the Cleveland Clinic Office of Patient Experience, and her colleagues surveyed 439 patient advocacy organizations across the United States.
Of the 289 groups that responded, more than two-thirds reported receiving industry funding, with a median of $299,000. Twelve percent said they received over half their funding from industry. Almost 9 percent received $1 million or more. The pharmaceutical, medical device, and biotechnology sector accounted for a median of 45 percent of the donations. Only one quarter of the groups said they had policies on disclosing their financial relationships.
Further Reading:
- Transparency is Good in Theory, But Not in Practice; http://sco.lt/6qCqTR
- #Pharma to Patient Advocacy Groups Questioning High Drug Prices: "Why Are You Doing This to Us?"; http://sco.lt/4sOB7J
- Holy Sh*t! Is There No End to Mylan's Shenanigans? Paying Off Patient Groups to Lobby!; http://sco.lt/6Sl0ld
- UK Patient Groups that Backed New Cancer Drug Received £ from #Pharma Firm; http://sco.lt/84W3En
- Majority of Patients’ Groups Siding With Pharma Against Medicare Part B Pricing Reforms Receive Industry Funding; http://sco.lt/574i6D
- #Pharma's "Patient Centricity" Pays Off: Patient Groups Mum on Drug Costs; http://sco.lt/8ydeuv
Via Pharma Guy