WASHINGTON — 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.
“They are increasing in number and are extremely powerful in terms of their public trust and the many ways they can influence public policy and health care delivery,” she said. “Their hands are in pretty much all aspects of biomedical clinical care and research.”
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.
Eight percent of the advocacy group leaders said they felt pressured to conform their positions to the interests of corporate donors.
If that doesn’t sound like cause for alarm, Rose would disagree.
“We think people are likely underreported the pressure,” she said.
Besides that, she suggested, there are nearly 8,000 such groups in the US, so 8 percent means an estimated 640 organizations feeling compromised by their funders.
“The worry we have is that there are such groups, for example diabetes groups that may endorse sugary food, which is obviously not in the best interest of the people they serve, who may not be focused on the interests of their constituents,” Rose told STAT.
Marks said that explicit pressure is not the only concern.
“PAO’s financial relationships with industry can create subtle reciprocity and influence,” he said. “For industry, these gifts are usually part of the strategies of influence, designed to influence PAOs directly and through them, policymakers.”
The respondents were queried from Sept. 1, 2013, to June 30, 2014. They were promised confidentiality, and Rose said she did not see the names of the organizations or their leaders.
The study notes: “Many respondents report a need to improve their conflict of interest policies to help maintain public trust.”
The authors also said that PAOs need to be more transparent about their relationships to maintain independence. They also advocated development of consensus standards within the PAO community, and, on a less practical note, preventing the leaders from knowing the identity of donors.
Ditto for “Alzheimers” re the ALS comment. We need more awareness of this issue. I have wondered that since there is more pressure on doctors not to have conflicts of interest w pharma, that there is even more w these advocacy orgs. Since they are nonprofits, it is very hard to find out how much they are receiving from their corporate beneficiaries.
The various associations for neurodegenerative diseases, for example, the ALS association are controlled by neuroscientists who promote group think and most can’t see the forest for the trees.
For over 100 years billions of dollars have been spent to look for the magic pharmaceutical to cure these diseases to no avail while millions die.
Even presenting abundant anecdotal evidence and proving the concept on ALS mice in a PLOS one paper fails to move the narrative to redirect research
Worthwhile investigation. Patient advocates who have experienced harm from drugs or devices are twisting in the wind. They do not make good cheerleaders.
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