Because patient advocacy groups aren’t always what they seem: A quick guide to nonprofit sleuthing

Mary Chris Jaklevic is a freelance health care reporter and regular contributor to this blog. She tweets as @mcjaklevic.

Journalists shouldn’t take organizations they report on at face value. Rather, they should ask who calls the shots and who provides the funding. And they should report findings that call into question a group’s credibility.

But as has repeatedly found, that essential legwork often doesn’t occur when it comes to patient advocacy groups. Most recently we chronicled how news stories and op-ed taglines didn’t call out the pharmaceutical industry backing behind the nonprofit Alliance for Patient Access.

There’s good reason to be skeptical. Well over half of patient advocacy groups acknowledged accepting money from drug, biotech, or medical device companies in recent surveys published in the Journal of the American Medical Association and the New England Journal of Medicine. Nearly 40 percent reported having a current or former corporate executive on their board, according to the latter study.

Why does this matter? Corporate cash may buy a nonprofit organization’s silence on skyrocketing drug costs or induce its help in clearing regulatory hurdles for unproven treatments or quashing cost controls. For example, last year pharma-backed patient groups such as the AfPA and Patients Rising lobbied to defeat a Medicare Part B demonstration project to lower the cost of drugs administered in physicians’ offices.

It’s not always possible to know the precise impact of a particular contribution, but the public can better judge an organization’s credibility and motives when financial interests are in the open.

By year’s end, Kaiser Health News plans to unveil a database of at least 1,000 patient advocacy nonprofits that will include each group’s financial information, an overview of its policy positions, and a list of publicly disclosed contributions from industry.

“We hope this will be a resource for readers and reporters interested in critically engaging with issues that patient advocacy groups have a stake in,” said KHN reporter Emily Kopp. “We hope to assist independent patient advocates, journalists and news consumers in keeping patient advocacy groups accountable to the constituencies they represent.”

With her input, we’ve compiled a list of quick-and-dirty steps journalists and consumers can take to do their own nonprofit sleuthing. Most of these can be accomplished in less time than it takes to brew a pot of coffee.

Start with a smell test

Plug the organization’s address into Google Maps. Does the address take you to the location of a Washington, D.C., consulting firm or an expensive home? If so, that’s a red flag that the group might be front for a corporate interest. If the address isn’t listed on the web, you can find it on the first page of the organization’s Form 990 (next step).

Drawback: This won’t help you detect a legitimate advocacy group whose agenda is being influenced by corporate contributions.

Download the Form 990

The IRS requires tax-exempt organizations to disclose some of their inner workings by filing an annual Form 990. These documents are free online through outfits such as the Foundation Center,, ProPublica’s Nonprofit Explorer, Charity Navigator and Guidestar. Nonprofits must disclose governing officers, key employees, and the five highest paid contractors making more than $100,000. They’re also required to describe their most expensive programs and list any business relationships between board members and the organization.

Some questions to explore:

  • Do any of the board members or the “principal officer” listed on page 1 have a relationship with industry? Check LinkedIN and do a web search to find out.
  • Is the patient group paying a large portion of its budget to outside consultants? If so, whom else do those consultants work for?

Drawback: Nonprofits do not have to disclose their financial contributors. Also, these records are usually a year or two old.

Explore the organization’s web site

A group’s website will give you a feel for its commitment to transparency. Many nonprofits voluntarily disclose their funders on their web sites, often listed as “partners,” “sponsors,” or “corporate members.” Sometimes funders are listed in annual reports posted on the web site. Sometimes the data is there, but it’s sketchy or difficult to find. An appendix to the NEJM study suggests questions including: Does the organization list the names of donors? Does it claim that the list is complete? Are the amounts and uses of donations disclosed? Does the organization state total revenue from corporate sources?

Other things to check:

  • News releases and communications to regulators. Patient groups naturally align with industry on some issues, such as increased funding for the National Institutes of Health. But if an advocacy group consistently echoes the corporate policy positions, it’s worth asking whether the group is really looking out for patients.
  • A conflicts of interest or ethics policy. Is there one? Does it cover corporate contributions?

Drawback: Exact amounts of contributions and what they are used for are seldom disclosed.

Check out the financial interests of any physician leaders

If physicians are on the board, see if they receive corporate cash. Thanks to the Affordable Care Act, drug makers are required to disclose payments to physicians. ProPublica’s Dollars for Docs and CMS’ Open Payments house this data. It’s also worth plugging a physician’s name into PubMed and reading any publicly available research papers, where financial disclosures are usually listed at the end.

Drawback: These sources don’t capture all potential economic conflicts. For example, oncologists and rheumatologists can profit significantly from Medicare markups on drugs they administer in their offices through injection or infusion. Also, they only apply to doctors, not other health professionals.

Look at corporate disclosures

Public pressure, criminal prosecutions and state mandates have led some companies to report their contributions to nonprofits on their web sites or in annual reports, although it’s not required by law. Also, some companies voluntarily disclose donations to social welfare nonprofits, known as 501(c)(4)s, and those are tracked by the Center for Public Accountability.

It could be worth investigating corporate contributions made indirectly through nonprofits. Nonprofit trade groups such as the Pharmaceutical Research and Manufacturers of America (PhRMA), the Biotechnology Innovation Organization (BIO), and the Medical Device Manufacturers Association (MDMA) must disclose contributions to nonprofit advocacy groups on their own 990 tax forms. Some corporations do at least some giving through private foundations, which disclose their beneficiaries via their own versions of a 990, called a 990-PF. But again, those filings will not include direct corporate contributions.

Drawback: Voluntary corporate disclosures aren’t always easy to find, don’t always include amounts, and often aren’t searchable. And they’re voluntary, so if a company wants to hide a contribution, it can.

Read this (very short) list of U.S. advocacy groups that have pledged not to accept corporate funding

Yes, they exist. Georgetown University Medical Center’s PharmedOut project maintains a list of patient and consumer advocacy groups in the U.S. and Canada that don’t take money from pharmaceutical, medical device or biotech manufacturers. There are just a handful, and their voices are “drowned out by the thousands of groups that take money from industry and push industry viewpoints — or stay silent on drug safety, drug costs, and other issues vital to health,” said PharmedOut Director Adriane Fugh-Berman, M.D. She said the list is meant to be a resource for journalists and “anyone who wants to listen to and support non-industry-biased organizations that truly represent the interests of patients and consumers.”

Perusing these organizations’ web sites will give you an idea of what good disclosure practices and conflict-of-interest policies look like.

Drawback: None that we can identify.

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Comments (2)

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Michael S. Altus, PhD, ELS

October 13, 2017 at 12:46 pm

Plus, you can ask the organization itself the questions posed in this blog entry. An organization that won’t disclose raises the concern that it has something to hide. And you can also do a Google search to look for reporting about activities in which the organization is involved.

Gloria Stone

October 16, 2017 at 8:17 am

I would also ask the ‘age’ of the group. Newer groups often need start-up money, but many pharma companies have initiated rules that say that over a short time frame the patient group can no longer have a significant portion of its support from pharma. Lots of these groups do rely on pharma to help them get started, but they need to then obtain support from other organizations over a timeframe.