Industry ties common among nonprofit patient advocacy groups

The March 1 story is refiled to add new final paragraph, for clarification

(Reuters Health) - An examination of more than a hundred of the largest U.S. nonprofit organizations created to improve health and fight disease has found that more than 8 in 10 get financial support from companies involved in the drug, biotechnology and medical device industry.

In addition, over a third have at least one industry official on their governing board and, in 12 percent of the 104 organizations analyzed, an industry official was listed as leading the governing board.

The tally raises concerns about potential conflicts of interest among groups that claim to be looking out for the best interest of patients but whose advocacy may be influenced by industries that have a financial interest in certain treatments.

“Concerns have been raised that industry-supported patient-advocacy organizations have spoken out for access to drugs with questionable therapeutic benefit and remained silent on policy proposals, such as drug-pricing reforms, that might benefit their constituents,” the research team from the University of Pennsylvania in Philadelphia writes in the New England Journal of Medicine

The influence might be even more extensive than the numbers suggest, say the authors, led by Matthew McCoy, a postdoctoral fellow in the university’s department of medical ethics and health policy.

Some of the 104 groups, all with annual revenues of more than $7.5 million, don’t publish detailed information on their sources of revenue or members of their governing board.

What was available showed that at least 39 percent of the health-oriented public advocacy groups each got a least $1 million a year from industry.

The websites of only 12 percent of the organizations posted conflict-of-interest policies for managing such potential problems.

The findings don’t necessarily mean that the organizations have been compromised, McCoy told Reuters Health.

“I don’t want to impugn them,” he said. “But I think we have a right to know more. If an organization receives more than 50 percent of its support from a drug or device company, I might take what they say with a grain of salt.”

The groups ranged from the New York-based Child Mind Institute which was the only organization of the 104 that explicitly says it does not accept industry support, to the National Hemophilia Foundation, whose 2014 annual report indicates that it received 50 percent to 83 percent of its annual revenue from drug or device companies. (Like many organizations, the foundation only reported donations in a range of dollars.)

The foundation responded to Reuters Health with a statement saying that industry officials are prohibited from serving on its board and the organization “has never and will never advocate for any single treatment or group of treatments before legislators, or public and private payers. Instead, NHF advocates for all FDA-approved therapies, and will continue to fight to ensure that individuals with bleeding disorders have access to the therapies they need.”

Eighteen groups didn’t report getting money from industry, but 13 of those provided no donor information at all.

Of 59 groups that reported the amounts of their donations, 11 received at least 10 percent of their financial support from industry donations.

They included the American Diabetes Association, the Epilepsy Foundation, the Arthritis Foundation, the National Kidney Foundation, and the National Hemophilia Foundation.

The groups that responded to a Reuters Health inquiry said those donations don’t influence policy.

For example, the Kidney Foundation, in a statement, said that although it does accept financial support from industry, “this support does not drive policy positions, priorities, mission or objectives” and the sole industry member on its 24-member board is prohibited from voting on matters related to that person’s business.

Arthritis Foundation president Ann Palmer released a statement to Reuters Health saying, “Our corporate partners pay to sponsor events and tools. To keep the needs of people with arthritis at the center of what we do, the Foundation makes advocacy and position decisions independently - our corporate partners do not shape our agenda or advocacy efforts.”

The organization would not allow industry members to be on its governing board, she said.

An earlier version of this story incorrectly listed the Alzheimer’s Disease and Related Disorders Association among the organizations that receive at least 10 percent of their financial support from industry. The organization tells Reuters Health that in 2016, only 1.04% of its revenue was contributed by pharmaceutical/medical device/biotech companies.

SOURCE: New England Journal of Medicine, online March 1, 2017.