Study Reveals Potential Conflict Of Interest In Patient Advocacy Funding

Most patient advocacy groups get funding from the industry, a new study finds. That means they may have a conflict of interest when they are representing patients.

ROBERT SIEGEL, HOST:

Groups that speak out on behalf of patients are known as patient advocates. But those groups often get some of their funding from drug and medical device makers, and that creates potential conflicts of interest. A new study pinpoints just how common the practice is, as NPR's Richard Harris reports.

RICHARD HARRIS, BYLINE: Patient advocates speak up at Food and Drug Administration meetings where new drugs and devices are being considered. They buttonhole their members of Congress and research administrators.

SUSANNAH ROSE: We think of patient advocacy groups as being largely independent nonprofits. And we don't often think of them, you know, working with many other entities.

HARRIS: Susannah Rose, a bioethicist at the Cleveland Clinic, says it's not news that some of these groups take industry funding. But nobody had put a number on that, so she and her colleagues surveyed some of the 8,000 groups who advocate for patients. She was surprised to find that two-thirds of the groups who replied said they took at least some money from industry.

ROSE: Furthermore, we found that about 12 percent received over half of their annual revenue from industry, which also was surprising to us. One worry is that industry may be influencing their actions and they may be biased in terms of industry interests.

HARRIS: One way to deal with these conflicts is for organizations to reveal exactly who's giving them money and how much. Often that information is hard to find and parse or absent altogether. Rose says they also need strong conflict-of-interest policies.

ROSE: Many of the groups mentioned that they have policies, but many of them are not convinced that what they're doing right now is adequate to manage industry influence in their organizations.

HARRIS: The survey results are published in JAMA Internal Medicine. These groups can further the interests of the companies that fund them. For example, David Hilzenrath at a consumer group called the Project on Government Oversight notes that the FDA's drug approval process is funded heavily by industry. Periodically, the agency is required to review its system, getting input from both industry and advocacy groups.

DAVID HILZENRATH: We took a look at the groups that the FDA consulted in fulfillment of that legal requirement. And we found that more than 90 percent of them received funding from pharmaceutical and biotech industries.

HARRIS: So they weren't exactly an independent voice. Hundreds of these groups also wrote letters to Congress supporting the 21st Century Cures Act, which, among other things, makes it easier for drug and device makers to get new products approved.

HILZENRATH: Clearly they add credibility to undertakings such as this.

HARRIS: The National Health Council is an umbrella group for these organizations and also gets a lot of industry funding. CEO Marc Boutin says drug and device companies aren't setting the agenda here.

MARC BOUTIN: Patient organizations are going to address the issues that are important to their members. They're governed by their members. They're accountable to their members.

HARRIS: Boutin says in many cases, patients and industry want the same things and they move in lockstep. He says they do have disagreements, for example, over the high cost of drugs and other medical care. In those cases, though, the louder they protest, the more they risk alienating their industry funders. Richard Harris, NPR News.

KELLY MCEVERS, HOST:

Just a reminder that when President-elect Donald Trump is sworn in on Friday, many NPR stations will be live with voices from the National Mall and across the country.

SIEGEL: Listen to live inauguration coverage and go to npr.org to watch a live fact-check on the inaugural address.

Copyright © 2017 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.