As a social worker, Susannah Rose referred clients with cancer to patient advocacy groups she trusted to dispense unbiased advice - until she heard the groups might be taking money from pharmaceutical companies.
So she set out to investigate.
Two-thirds of patient advocacy organizations reported receiving industry funding, Rose, now a bioethicist, finds in a new study.
Her research was published today online in JAMA Internal Medicine along with other studies showing a host of ways pharmaceutical manufacturers appear to pay for influence.
"Relationships with industry might bias advice, and I don't think anyone is immune to that," said Rose, who is scientific director of research for the Cleveland Clinic's office of patient experience in Ohio.
"If they're getting funding and advocating for certain medications, there's a potential for undue risk of influence," she said in a phone interview.
Rose and her colleagues identified 7,865 patient advocacy organizations in the U.S., most involving cancer and rare or genetic disorders. Blinded to the identity of the groups, they surveyed a random sample of the organization's leaders about financial conflicts of interest.
More than 67 percent of 245 patient advocacy groups reported receiving industry funding in the past year. Of those, nearly 12 percent reported that more than half their funding came from industry.
Michael Jacobson, executive director of the Center for Science in the Public Interest in Washington, D.C., said he was "astonished" by the sheer number of nonprofits claiming to advocate on behalf of patients.
"It's good to get a light shined on these organizations," Jacobson said in a phone interview. He was not involved in the study.
"Industry wants to put as many thumbs as possible on the scale. They fund researchers, patient advocacy organizations, right-wing organizations," he said. "They give consulting fees to professors."
When the U.S. Centers for Disease Control and Prevention drafted guidelines for prescribing opioids for chronic pain in an effort to curtail a growing epidemic of abuse of the painkillers in 2015, nonprofit organizations stepped in to challenge the effort, according to a letter in the same issue of JAMA Internal Medicine by Dr. Caleb Alexander of the Johns Hopkins Center for Drug Safety and Effectiveness in Baltimore, Maryland and colleagues.
The CDC postponed releasing the guidelines and solicited public comments for 30 days.
Opioid manufacturers gave money to 45 of 158 patient advocacy and professional organizations that commented on the proposed guidelines, according to Alexander's team. Most of the comments supported the guidelines, the study found. But organizations with funding from opioid manufacturers were significantly more likely to oppose them, researchers found.
"The CDC received enormous pushback from these organizations," Alexander told Reuters Health in a phone interview.
"They argued that the guidelines were not evidence-based, that they weren't developed transparently, and that they would ultimately jeopardize the care of those in pain," he said.
In 2012, a U.S. Senate committee scrutinized how financial relationships between industry and nonprofits might have influenced regulations and prescribing practices for opioid painkillers, Alexander's study points out.
The American Pain Foundation shut down just days after two members of the committee wrote to the Maryland-based so-called health advocacy group questioning its funding in light of a report in ProPublica showing that the foundation had downplayed the risks associated with opioids and had received nearly 90 percent of its $5 million from the drug and medical-device industry.
Rose and Alexander both called for more transparency about the flow of money to patient advocacy and professional organizations. Alexander recommended that the CDC request or require disclosure of funding sources from commenters.
The CDC achieved its goal of soliciting feedback on the opioid guidelines from a host of stakeholders, spokeswoman Courtney Lenard told Reuters Health in an email. Because commenters may remain anonymous, not all financial conflicts could be identified, she said.
In an editorial, researchers Ray Moynihan and Lisa Bero call for prominently displayed disclosures of funding sources on patient advocacy groups' websites as well as adding the groups to a program that mandates disclosure of physician funding.
Moynihan and Bero, both from the University of Sydney in New South Wales, Australia, write that Rose and Alexander's studies "demonstrated an urgent need for patient advocacy organizations to explicitly focus much more on representing the interests of patients and citizens, rather than serving - inadvertently or otherwise - the interests of their industry sponsors."