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8 out of 10 patient-advocacy groups have conflict-of-interest problems, study finds

8 out of 10 patient-advocacy groups have conflict-of-interest problems
REUTERS/Regis Duvignau
Only 12 percent of the 104 organizations had published policies in place to help them manage their group’s conflicts of interest with corporate donors or partners.

More than 80 percent of prominent non-profit organizations that advocate for patients with cancer, diabetes, heart disease, lupus, mental illness and other conditions accept funding from drug and medical device companies, raising questions of conflicts of interest, a new study has found.

The study also found that about 40 percent of the organizations have a current or former pharmaceutical industry executive on their board of directors.

These findings are troubling, as patient-advocacy groups are at the center of many high-profile healthcare debates, such as what a drug or other medical therapy should cost and whether the therapy should be approved at an accelerated pace (before large clinical trials have proven its efficacy and safety).

In such instances, the interests of the pharmaceutical and medical device industries can be at odds with those of patients.

Greater transparency is needed from patient-advocacy organizations, say the authors of the study, which was published online Thursday in the New England Journal of Medicine (NEJM).

“If you’re a policymaker and you want to hear from patients, there’s a danger if there’s an undisclosed or underdisclosed conflict of interest,” Matthew McCoy, the study’s lead author and a medical ethicist at the University of Pennsylvania, told Kaiser Health News reporter Emily Kopp. “The ‘patient’ voice is speaking with a pharma accent.”

Study details

For the study, McCoy and his colleagues examined the tax records, annual reports and websites of 104 large, national not-for-profit patient-advocacy groups. All the groups reported annual revenues of more than $7.5 million for 2014 — a financial cutoff that enabled the researchers to focus on organizations that have the greatest impact on public attitudes and policy.

More than one-third of the 104 organizations (37 percent) focused on some form of cancer, and more than half had annual revenues in the range of $7.5 million to $24.9 million. 

Here are the study’s key findings: 

  • Overall, 86 of the 104 groups (83 percent) reported receiving financial support from drug, device and/or biotechnology companies. “The support was often substantial, with at least 39% of the organizations that disclosed donation amounts receiving at least $1 million annually from industry,” McCoy and his co-authors write.
  • At least 39 percent of the organizations had a current or former industry executive on their governing board, and at least 12 percent had a current or former industry executive in a leadership role on the board. As the researchers point out, “although existing studies of the relationships between patient-advocacy organizations and industry have focused almost exclusively on financial support from industry, it is important to recognize that conflicts of interest can also arise as a result of the competing interests of board members and senior officials.”
  • Only 59 percent of the 104 organizations (57 percent) published the amounts of the donations they received from industry. Furthermore, only 5 percent published the exact amounts they received. “Although [the organizations’] donor lists are necessary for determining the existence of conflicts of interest, they are insufficient for assessing the severity of such conflicts, which requires knowing — at a minimum — the amounts of donations and the uses to which donations were put,” write McCoy and his colleagues.
  • Only 12 percent of the 104 organizations had published policies in place to help them manage their group’s conflicts of interest with corporate donors or partners. “Having conflict-of-interest policies in place does not ensure that they will be followed, nor does it eliminate conflicts of interest,” the researchers point out. “However, sound publicly accessible policies are generally thought to reduce the likelihood of harm resulting from conflicts of interest while fostering public trust.”

Needed: more transparency

McCoy and his colleagues say their findings “provide strong reasons in favor of creating a ‘sunshine’ law to cover industry payments to patient-advocacy organizations.”

Such a law was recommended in a 2009 report on conflicts of interest from the Institute of Medicine, they point out, but it was left out of the Sunshine Act, which passed in 2010. Other countries, such as France, do have such requirements.

“Greater transparency would enable citizens, researchers, policymakers, and others to assess the possible conflicts of interest of patient-advocacy organizations in a way that is not currently possible,” write McCoy and his co-authors. “Greater transparency would also benefit organizations that receive only modest industry donations, by allowing third parties to differentiate them from patient-advocacy organizations that are highly dependent on industry funding.”

FMI:  You can read the study in full on the NEJM website.

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Comments (1)

A "Sunshine" law

…in this context is a great idea.

One that will never be enacted by a Congress with Paul Ryan as Speaker of the House and Mitch McConnell as Senate Majority Leader. Or, if you prefer your legislation more locally-based, such a law, while benefiting the public, will not likely see the Governor's desk with Kurt Daudt as Speaker of the Minnesota House and Paul Gazelka as Senate Majority Leader.

These are precisely the sort of regulations—benefiting the public, but "inconvenient" for pharmaceutical, medical device, and other medical-related industries and companies—that the GOP has been railing against for lo, these many years. It's a lot more difficult to pass a bunch of lobbyists for your company off as a "patient advocacy" group if that group has to make public the fact that it's funded by, or largely consists of, lobbyists for 'x' industry or employees of 'xyz' corporation, makers of a widely-prescribed drug or widely-used medical technique or device.