More Than 80 Percent of Patient Groups Accept Drug Industry Funds, Study Shows

http://www.nytimes.com/2017/03/01/health/patient-groups-drug-industry-money.html

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The nation’s largest patient advocacy groups are on the front lines of some of the biggest health care debates, from the soaring costs of prescription drugs to whether new medicines are being approved quickly enough.

But while their voices carry weight because they represent the interests of sick patients, a new study has found that more than 80 percent of them accept funding from drug and medical-device companies. For some groups, the donations from industry accounted for more than half of their annual income, and in nearly 40 percent of cases, industry executives sit on governing boards, according to the study, which is published in The New England Journal of Medicine.

Nearly “nine out of every 10 are taking money,” said Dr. Ezekiel J. Emanuel, an oncologist and vice provost at the University of Pennsylvania. He is one of the authors of the study, which looked at the top 104 nonprofit patient advocacy groups that reported more than $7.5 million in annual revenues for 2014. “I think that is not well known — I think that is a shock.”

Dr. Emanuel, who previously advised President Obama on health care, said patient groups were far less transparent about conflicts of interest than medical researchers, who are now pushed to disclose ties to the drug and device industries when they write articles and make public appearances.

“Compared to what researchers are doing, this is pathetic,” he said. And yet “they wrap themselves in white as if they’re pure.”

Patient groups said they have taken steps in recent years to improve their financial disclosures and conflict-of-interest policies, and rejected the suggestion that they were influenced by their corporate donors.

“Patient advocacy organizations are driven by their missions — putting patients first,” said Marc M. Boutin, the chief executive of the National Health Council, an umbrella group for patient-advocacy groups. “To say otherwise negates the extraordinary work achieved by these organizations on behalf of their patients.” The health council had previously said that pharmaceutical companies accounted for 62 percent of the council’s $3.5 million budget in 2015.

The study also found a wide disparity in how the groups disclose the donations, making it difficult for members of the public to know how significant the industry funding is. The study authors gathered their data by examining the websites of the nonprofit groups, as well as their tax filings and annual reports from 2014.

The researchers pointed to the National Hemophilia Foundation as one group that is vague about its funding because, although it lists corporate donors, it only discloses donation ranges. Drug makers contributed a range from $8.5 million to $14 million of the group’s $16.8 million annual budget in 2014, the year researchers studied. Its top donors, Baxter, Biogen and Novo Nordisk, make products used by people with hemophilia; each donated between $2 million and $3 million, the researchers said.

The American Diabetes Association, by contrast, reported receiving more than $28 million in industry funding in 2014, or about 15 percent of its budget, but provided detailed disclosures of which companies donated, and how much, the study authors said.

In a statement, the hemophilia foundation said it never allows its corporate sponsors to influence its decision-making, and that it also does not endorse specific products or favor certain companies. It declined to provide precise dollar amounts of contributions from companies, saying that the foundation complied with “accepted financial reporting standards.”

The study’s authors said transparency could be improved by requiring the drug and device industries to report how much they donate to patient groups, much like they are already required to do with doctors.

That was applauded by other critics of the drug industry. “I think sunshine is an excellent disinfectant,” said David Mitchell, the founder of a new group, Patients for Affordable Drugs, that seeks to lower drug prices, and does not take funding from industry groups. He was not involved in the study.

Mr. Mitchell said patient groups often do not disclose that they take industry funds when they testify before Congress or government agencies, or when they disseminate educational information to patients.

Many have also been silent on the issue of rising drug prices, even as the issue has enraged patients, who have been increasingly exposed to the prices that pharmaceutical companies set as insurers have asked them to pay a greater share of their drug costs. Last summer, patients and their families loudly protested the skyrocketing price of EpiPens, though the movement gathered steam on social media rather than through traditional patient-advocacy groups.

And a year ago, for example, a representative for the National Psoriasis Foundation did not disclose that her group receives at least 40 percent of its annual revenues from drug companies when she testified before the North Carolina state legislature on an unsuccessful measure supported by the pharmaceutical industry that would have limited insurers’ ability to block coverage of certain drugs. Similarly, the hemophilia foundation did not disclose its pharmaceutical ties when it took the industry’s side in 2015 in a letter to the Food and Drug Administration over the issue of biosimilars, which are cheaper alternatives to complex biological drugs.

“In the absence of disclosure,” Mr. Mitchell said, “those policy makers or patients are unable to make informed judgments about the motives of the information being given, and the credibility of the information.”

Randy Beranek, president and chief executive of the psoriasis foundation, said he did not see a conflict of interest because both the foundation and pharmaceutical companies are seeking to help serve patients.

“Our interests all intersect at some point, and that’s at the patient,” he said.

In the case of the North Carolina proposal, Mr. Beranek acknowledged that his group sides with the drug industry on some issues but said, “it’s a coincidence that it’s an important policy issue to them, but to us, it’s in the patient interest.”

Holly Campbell, a spokeswoman for the Pharmaceutical Research and Manufacturers of America, an industry trade organization, said its members did not expect patient groups to agree with them on every issue. “We work with many organizations with which we have disagreements on public policy issues, including on prescription medicine costs, but believe engagement and dialogue are critical,” she said.