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

Filed Under: Costs, Patients, Providers

“Journalists shouldn’t take organizations they report on at face value,” Mary Chris Jaklevic writes over at Health News Review, the watchdog organization. “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. …  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’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…”  Mary Chris Jaklevic, “Because patient advocacy groups aren’t always what they seem: A quick guide to nonprofit sleuthing,”