Corruption Within Patient Advocacy Groups

ProPublica has discovered that the American Pain Foundation, ostensibly the independent voice of pain patients, is in fact largely a subsidiary of painkiller manufacturers. Predictably, APF says they are not influenced by having more than 90% of their budget coming from the pharmaceutical industry. One wonders then why they hid the relationship, given that it was of such putatively minimal consequence.

This is in many ways an old story. On many health-related public policy issues, some “patient advocacy groups” and “independent health experts” are creatures of commercial industry who mouth their patron’s line. Some of them are sincere in their views; others are just riding the gravy train. In either case, consider the advantage this gives the industry in political battles.

A Congressional Committee considering pharmaceutical industry regulation might convene a panel of witnesses that is intended to give a range of perspectives. First could be an official representative of the industry itself, second a member of a patient advocacy group which is covertly funded by the industry, third an Ivy League professor of medicine who has received enormous speaking fees from the industry, and last a law enforcement expert who has been consulting to the industry since she retired from the police. From the outside, it looks like all the relevant stakeholder happen to agree that no regulation is needed, but from the inside it’s a complete con. I’ve personally seen such shams work more than once, apparently without the knowledge of the legislators concerned.

There is no simple solution to this problem, but two ameliorative steps are possible. Every single time journalists get the perspective of a patient advocacy group or an individual health professional on a public health issue involving regulation of a corporate interest, they should ask the interviewee if they have ever taken money from that corporate interest. Likewise, after the witnesses have been sworn in, every Congressional and state legislature hearing should begin with the chairman saying “We are taking advice from each of you on the assumption that you each provide a unique perspective. I therefore begin by asking you to state for the record that you have never been in the pay of any other individual or organization represented on the panel today”.

Author: Keith Humphreys

Keith Humphreys is the Esther Ting Memorial Professor of Psychiatry at Stanford University and an Honorary Professor of Psychiatry at Kings College London. His research, teaching and writing have focused on addictive disorders, self-help organizations (e.g., breast cancer support groups, Alcoholics Anonymous), evaluation research methods, and public policy related to health care, mental illness, veterans, drugs, crime and correctional systems. Professor Humphreys' over 300 scholarly articles, monographs and books have been cited over thirteen thousand times by scientific colleagues. He is a regular contributor to Washington Post and has also written for the New York Times, Wall Street Journal, Washington Monthly, San Francisco Chronicle, The Guardian (UK), The Telegraph (UK), Times Higher Education (UK), Crossbow (UK) and other media outlets.

6 thoughts on “Corruption Within Patient Advocacy Groups”

  1. An exceedingly good idea.

    I recall when I testified against the Bank of America’s takeover of Countrywide as a great danger to the BoA and the public fisc (Dear BoA, don’t you wish now the deal had been turned down?) at what turned out to be the Fed’s show hearing (to which no attention at all was paid by the decision makers) there was a disgusting display by a variety of purportedly independent groups, including many that have good reputations from past worthy deeds, about how great the BoA was.

    The basis of their testimony was pretty much that the BoA gave them money.

  2. Are there any politically significant “advocacy” or “public interest” groups in America that aren’t astroturf? Any at all?

  3. Siobhan Reynolds started the Pain Relief Network, but it was destroyed by prosecutor Tanya Treadway and had to declare bankruptcy. Reynold’s died recently in a pain crash. Radley Balko wrote a decent bit about her at The Agitator.

  4. I don’t understand the second proposal vis-a-vis “never been in the pay of any other individual or organization represented on the panel today”.

    Say you’re holding hearings and you are getting testimony from a faculty member at university X. Is your proposal that nobody else who has ever been an employee of X can testify? What about professor Y and their former advisor (clearly someone who paid them), professor Z?

  5. I find it hard to take patient advocacy groups seriously, when every time a study comes out showing drug X is essentially ineffective for cancer Y (or at best extends life an average of a few weeks), at a cost of about $100,000/yr, some patient advocacy group whines shrilly about the prospect of the drug being no longer FDA labeled for that use.

  6. Medical presentations today (at grand rounds, conferences, and other functions) are required to begin with a declaration of conflicts of interest. This is generally on the first or second slide of the presentation. Things like stock ownership, consultant fees, and honoraria are supposed to be disclosed.

    Having similar declarations under oath at the start of legislative panel testimony should be fairly easy to implement, since the models for disclosure are already familiar to most clinical audiences.

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