At least 83% of the nation’s 104 largest patient-advocacy groups take money from the drug and medical-device industries. Often, those groups don’t disclose that they are taking money from corporations that are selling drugs and medical wares—a huge conflict of interest. ­Examples…

Patients Rising. This group, with multiple pharma sponsors, advocates for new drugs. Public-health advocates argue that its true purpose is to advocate for more drugs no matter how much they cost and even if their superiority isn’t proved.

Pain Groups. The Academy of Integrative Pain Management, US Pain Foundation, American Chronic Pain Foundation and American Pain Society all have taken money from opioid manufacturers.

Unlike truly patient-centered organizations, which can be indispensable sources of information and support, industry-funded organizations have an incentive to downplay medication risks and the benefits of lifestyle changes and alternative treatments. One sign that a group’s loyalties may be divided is disclosure of funding from drug and/or medical-device companies—or, perhaps more telling, vague or evasive language about funding. More warning signs…

Asserting that patients need rapid ­access to new drugs. 

Advocating that problematic drugs be kept on the market.

Advocating for the diagnosis of a new disease. 

Web-based screening tests promoted to tell you whether you have a particular disease—and qualify for treatment.

Some ­patient-centered groups and websites don’t take industry money. These include government sites such as the National Cancer Institute and any that are part of the National Institutes of Health.

In addition, you can go to the National Library of Medicine, which has a layperson-friendly search engine  to research medical conditions. Other independent ­organizations include National Women’s Health NetworkNational Center for Health Research…Public Citizen Health Research Group…and Patients for Affordable Drugs. For additional patient groups that don’t accept money from drug companies, go to PharmedOut.org/pharma-free-groups.html.

Related Articles