The Hidden Hand: Big Pharma’s Influence On Patient Advocacy Groups details the picture of money and intertwined organizational relationships between drug corporations and major national patient groups. It also documents the role of Big Pharma money in multimillion dollar patient assistance “charities” and so-called “astroturf” groups that claim to speak for patients, but are actually tools of the drug industry created to serve its interests, including protecting its unilateral pricing power.

“Legitimate national patient organizations provide important services including patient education and support, advocacy to ensure adequate coverage, and research into new treatments. But they rely heavily on pharmaceutical corporation funding, which they often obscure,” said David Mitchell, a cancer patient and founder of Patients For Affordable Drugs. “As a result, on the issue of drug pricing, they have conflicts of interest that are readily apparent, and they are constrained from taking positions opposed by their industry funders.”

The report, compiled over several months, examines a sample of 15 respected, influential national patient organizations. These groups provide valuable and important services to patients and are strong advocates for coverage and research funding. The report, however, shows how their financial dependence on the drug industry, which is almost never fully disclosed, constrains them from taking stances on policy proposals that are opposed by the industry but are broadly supported by Americans on both sides of the aisle.

Specifically, the report found:

• All but one of 15 major national groups fail to disclose fully and clearly the total amount of funding they receive from the pharmaceutical industry. Although many of the 15 groups supported lowering out-of-pocket costs, which is supported by the industry, not one supported proposals allowing Medicare to negotiate lower drug prices in the last two years, a policy opposed by the industry.
• Funding by pharmaceutical companies to “patient assistance charities” produces a handsome return on investment at the expense of taxpayers — as much as $21 million for every $1 million invested. Two of the four charity groups examined have recently entered into settlements with the government for illegal coordination with their drug company funders.
• None of the four astroturf groups reviewed disclose their funding, but three of the four are actually housed in or staffed by for-profit firms that advocate for pharmaceutical companies or have been staffed by PhRMA employees in the past.

“Patients, policymakers, and media need to know when they hear from a patient group on a policy issue that funding from drug companies may affect the positions the organization takes. We learned that a group representing patients with my cancer — the International Myeloma Foundation — relied on two drug corporations for 57 percent of its total funding in 2019,” Mitchell said. “That helps explain positions it has taken in the past opposing reforms to lower drug prices and its failure to speak in favor of reforms Americans overwhelmingly support, like direct Medicare price negotiation.”

The report outlines the following questions for policymakers, elected officials, and the news media to ask patient groups advocating on drug pricing issues to understand their connection to pharma:

• How much money do you receive from the drug industry?
• Is drug industry funding fully and clearly disclosed on your website?
• Do you have drug industry representation on your board?
• Do you ever take positions opposed by your drug industry funders?

A full copy of the report can be viewed here.