Millions of Dollars Flow From Pharma to Patient Advocacy Groups
Pharma money is all over the place 鈥 in universities, companies doing continuing medical education for doctors and in prominent patient advocacy organizations that are household names across America.
Public Citizen, a consumer advocacy nonprofit, reports today that between 2010 and 2022, the drug industry鈥檚 main lobbying group and member companies provided at least $6 billion in grants to more than 20,000 organizations. , provided exclusively to 麻豆女优 Health News in advance of its release, focused on the Pharmaceutical Research and Manufacturers of America (PhRMA) and 31 drug companies that were members of the trade group as of March.
The money dwarfs industry spending over that time on federal lobbying and campaign contributions to lawmakers. With high drug prices a regular topic of debate in Washington, drug industry grants to patient advocacy groups in particular raises questions about conflicts of interest 鈥 including whether organizations that accept the industry鈥檚 money shy away from pushing policies the drugmakers oppose, even if patients may benefit.
鈥淭here鈥檚 a risk that those entanglements influence the work of those organizations,鈥 said Matthew McCoy, an assistant professor of medical ethics and health policy at the University of Pennsylvania who has studied patient advocacy groups鈥 influence and transparency.
He said there鈥檚 another important dynamic likely at play, too. Companies aren鈥檛 blindly choosing which groups to fund but instead are 鈥減robably selecting organizations that are already inclined to see the world, see the policy issues, the way they see it.鈥
A couple examples you鈥檒l recognize: The American Heart Association received $64.1 million over the 12-year period. The American Cancer Society and its advocacy affiliate, the American Cancer Society Cancer Action Network, together received $23.1 million.
The question is whether the money affects the heavyweight groups鈥 advocacy. After the House passed the Inflation Reduction Act in August 2022, the hailed the bill鈥檚 cap on Medicare enrollees鈥 out-of-pocket costs for prescription drugs and additional tax credits for ACA insurance plans. But the group was silent on a contentious provision giving Medicare the ability to negotiate drug prices with manufacturers.
Lisa Lacasse, president of the American Cancer Society Cancer Action Network, said in an emailed statement that the organization didn鈥檛 take a formal position on Medicare drug negotiation because 鈥渢he policy鈥檚 impact on patient access to and affordability of cancer treatments was unclear.鈥 In contrast, the Part D out-of-pocket cap 鈥渉as evidence-based patient benefit.鈥
- 鈥淎CS CAN鈥檚 only constituents are cancer patients, survivors, and their loved ones nationwide. ACS CAN鈥檚 policy agenda is driven entirely by evidence with the single purpose of achieving our mission to end cancer as we know it, for everyone,鈥 she added. 鈥淐ontributions to the organization do not influence policy decisions or positions.鈥
The American Heart Association similarly has touted its support of the three-year extension of enhanced Obamacare tax credits in the IRA, but was silent on drug price negotiation. 鈥淲e have strict standards in place to monitor relationships with industry and protect against conflicts of interest,鈥 Steve Weiss, a spokesperson for the group, said in an emailed statement. 鈥淭hese funds in no way influence our advocacy, programs or science.鈥
- 鈥We engage with different organizations who have a wide array of health care opinions and priorities,鈥 Alex Schriver, senior vice president of public affairs at PhRMA, said in an emailed statement. 鈥淲e may not agree on every issue, but we believe engagement and dialogue is important to promoting a health care policy environment that supports innovation, a highly-skilled workforce and access to lifesaving medicines.鈥
While the patient groups鈥 primary mission is to advocate for people with particular diseases, including by boosting funding for research, their work in Washington often bolsters that of pharmaceutical companies whose drugs their patients rely upon. At the same time, the story isn鈥檛 always black and white, and just because a group gets money doesn鈥檛 automatically make them a 鈥減harma lackey,鈥 said Mike Tanglis, research director at Public Citizen. 鈥淚t鈥檚 not so clean cut,鈥 McCoy added.
The American Diabetes Association received $26.4 million from the drug industry 鈥 yet the group supported allowing Medicare to negotiate prescription drug prices. Multiple drug companies have sued to stop the program.
Francisco Prieto, chair of the American Diabetes Association鈥檚 national advocacy committee, said in a statement that support from its corporate and other partners allows the group to provide resources about diabetes to health care personnel as well as patients and their caregivers.
鈥淥ur partners do not influence our business or policy decisions, which are made solely based on our mission and what is in the best interest of patients around the world,鈥 he said.
Many groups receiving grants do criticize high drug prices generally or highlight patients鈥 difficulties in affording care. But, 鈥渟pecifically calling out pharma companies doesn鈥檛 seem to be a huge priority for them,鈥 Tanglis said.
It isn鈥檛 always obvious which groups drug companies are paying. Congress in 2010 enacted the Physician Payments Sunshine Act, a law that required payments to physicians from drug and medical device makers to be registered on a public website. But patient groups were not addressed in the bill. Drug companies鈥 payments to patient groups can be 鈥 but aren’t always 鈥 included in annual filings to the IRS or in charitable giving reports.
The American Heart Association lists contributions from corporations, foundations and others. The American Diabetes Association in lists corporate sponsors and ranges for the amounts they give, but not precise dollar figures. Similarly, the American Cancer Society鈥檚 names corporate sponsors giving more than $1 million, but exact amounts aren鈥檛 disclosed.
McCoy believes there should be 鈥渟ome kind of mandated transparency across the board鈥 for payments and that patient groups should openly answer questions about steps they take to make sure the funding doesn鈥檛 influence their decisions.
鈥淭hose are all great things that patient advocacy groups can and should be doing,鈥 McCoy said.
This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.