Pharma backing of advocacy groups: a call for transparency

Michael Joyce is a writer-producer with and tweets as @mlmjoyce

Lawmakers concerned about a mounting opioid crisis are pushing for the pharmaceutical industry to fully disclose their financial influence on patient advocacy groups.

Last week Ontario enacted a provincial law requiring pharmaceutical companies to disclose payments made to such groups, as well as professional medical societies.

This came just two weeks after a U.S. Senate report revealed that five major opioid producers gave over $10 million to third-party advocacy groups — and affiliated physicians — between 2012-2017. The report — sponsored by Missouri Senator Claire McCaskill — describes payments made by Purdue Pharma, Insys Therapeutics, Mylan, Depomed, and Janssen Pharmaceuticals (owned by Johnson & Johnson). 

Here are some of the highlights of the report:

  • 14 nonprofit groups (mostly representing pain patients/specialists) received nearly $9 million from the drug companies
  • affiliated physicians received roughly $1.6 million
  • Purdue Pharma (maker of Oxycontin) contributed the most: $4.7 million (mostly to the Academy of Integrative Pain Management)
  • Insys had the 2nd highest contribution — just over $3 million — mostly to the US Pain Foundation and the National Pain Foundation

“This has actually been going on a long time,” said investigative journalist Paul Thacker. Thacker was an investigator for Senator Charles Grassley of Iowa when they exposed drug companies for contributing nearly $23 million to the National Alliance on Mental Illness (NAMI) between 2006-2008.

“These tactics go back as far as big tobacco. If a lot of reporters have been getting fooled by it, then it’s no wonder the public is getting fooled too.”

Why should we care?

Here is a key excerpt of the McCaskill report:

Initiatives from the groups in this report often echoed and amplified messages favorable to increased opioid use — and ultimately, the financial interests of opioid manufacturers. These groups have issued guidelines and policies minimizing the risk of opioid addiction and promoting opioids for chronic pain; lobbied to change laws directed at curbing opioid use; and argued against accountability for physicians and industry executives responsible for overprescription and misbranding. Notably, a majority of these groups also strongly criticized 2016 guidelines from the CDC that recommended limits on opioid prescriptions for chronic pain — the first national standards for prescription opioids and a key federal response to the ongoing epidemic.

Critics argue that a lack of transparency blurs the distinction between patient advocacy and corporate advocacy. Couldn’t a nonprofit group essentially serve as a “front,” making it easier for a drug company to claim their motives are purely altruistic? A good example we wrote about five months ago is the nonprofit Alliance for Patient Access (AfPA) which frequently uses politicians, doctors, and journalists to promote agendas that help companies’ bottom lines.

Many of the pharmaceutical companies listed in the report counter that they’ve acted within the law. Many advocacy groups have nonprofit status and are not required to report donations.

But consumers and journalists are left in the dark with unanswered questions like these: Which groups are getting money? How much? And, perhaps most importantly, what exactly is that money being used for?

It’s something we’ve written about before, and consider it important enough that we published this guide to help journalists navigate these secretive relationships.

A consumer advocate’s perspective

“If I had my druthers consumer advocacy groups wouldn’t need to take pharma money, but the majority do,” said David Mitchell, founder and president of Patients for Affordable Drugs, one of the few advocacy groups that has pledged not to take industry funding (instead, like, they receive funding from donations, as well as the Laura and John Arnold Foundation).

David Mitchell

“But I don’t think advocacy groups should stop taking pharma money. That would cripple their ability to provide important services like patient hotlines, family support, and patient education. But I also realize that money can be misused for things like training patient advocates to lobby for proposals that are in pharma’s — not patients’ — best interests. Payments can be used to inhibit groups from criticizing pharma, or used to create front groups with fancy names that fight legislation that would hurt a company’s profits.

“But here’s the key to disclosure: If we have full disclosure in ALL those areas, then each of us can give weight to those sources of information. We’re better equipped to make up our own minds about whether what we’re hearing — or not hearing — is being influenced by corporate concerns or concerns for patients.”

Last year we reported on a study published in JAMA Internal Medicine which found that two-thirds of the patient advocacy groups surveyed received industry funding. Nearly half the industry support came from the pharmaceutical, device, and/or biotechnology sectors. The median amount received was $50,000.

More about PR than journalism?

“It’s really simple. Not only is money driving key health care decisions, but we’re getting answers that tend to benefit industry,” said reporter Thacker.

Paul Thacker

“The current environment is more about PR than it is about journalism. Reporters aren’t doing the work needed to expose this distorted information. A lot of reputable news organizations will say they have standards of disclosure, but they’re either pretty variable or nonexistent. It’s not hard: never go into an interview without checking your sources out first. There are no excuses. Because there’s a large body of peer-reviewed research that shows these financial conflicts of interest do influence advocates, doctors, and journalists. And now we even have journalists being paid as ‘thought leaders.’ I’ve never seen that before.”

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