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Are disease groups industry fronts?

Written by Diane Archer

During the health care reform debate, the overwhelming majority of groups representing people with particular diseases–so-called “patient-advocacy” organizations–opposed prescription drug price negotiation, the public health insurance option, and other policies that would have lowered costs for consumers. They appeared to represent industry interests. A new report by Matthew McCoy et al., Conflicts of Interest for Patient-Advocacy Organizations, published in the New England Journal of Medicine, confirms that almost all of these groups are funded by industry and many are governed by industry leaders, creating a large conflict of interest. Are disease groups industry fronts?

As it turns out, many disease groups are industry-advocacy organizations, heavily funded by the health care industrial complex, advocating for research and approval of unproven treatments, not for patient access to affordable care. If you are considering supporting any of these groups, you should find out where they stand on the issues you care about. Do they advocate for lower health care costs, prescription drug price negotiation and other pro-consumer policies?

The researchers studied 104 “patient-advocacy” organizations with annual revenues of at least $7.5 million. Only one of the 104 expressly said that it did not get any money from industry. Of the other 103 organizations, 86 (83 percent) said that they received industry support and another 13 did not disclose whether they received industry support.

Almost eight in ten (78 percent) of these organizations disclosed that they receive a minimum of $1 million from industry (39 percent) or did not disclose how much they received from industry (39 percent). Only one in five (22 percent) disclosed receiving less than $1 million from industry.

Moreover, almost four in ten of these organizations (39 percent) has a current or former health care industry leader on its board. And 12 of the organizations have an industry leader in the chair or vice-chair position.

Here’s more from Just Care:



  • This article would be a lot more helpful if you named names. For example, I’m occasionally asked to support Breast Cancer causes. Is there a way to find out which of the several groups is funded by industry and/or a legitimate fund raising entity and not a money making scam for its leaders.

    • An excellent point, Penny. The article in the NEJM does not name any specific organizations, though it suggests that all or virtually all the big ones have serious conflicts. I would recommend you ask any disease group you are considering supporting where it stands on the health care policies you care about, whether there are any executives or former executives from the pharmaceutical or health insurance industry on its board of directors and where you can find any letters to Congress or other policy positions the group has taken on its web site.

  • …being a senior I find this very troubling. Save for direct contact with our elected representatives in Congress, I feel that are few reputable sources to turn to. for advocacy One of the largest, AARP has been exposed on a number of issues including about a year ago, supporting a political interest that was involved with unfavourable changes to Social Security and Medicare. A major outcry via a petition drive fortunately caused them to reconsider, and they dropped support (at the time, I even unsubscribed from their site).

    This again makes me wonder if industries such as Big Pharma and Big Insurance are really suffering financially that they have to gouge us for products and services, while they also freely give millions away supporting these organisations to gain more leverage to push their agenda (as well as another tax write off ).

    Is there any independent non partisan watchdog group out there at all we can go to?

  • Unfortunately, this same conflict-of-interest situation is rampant with vaccine promoters as well with some additional targeted-goal industry funding as well.

  • I was about to ask the same question as Penny. Is there a fear of being sued at work here? Someone needs to spell all this out. It is too much for individuals to try to assess, in my opinion. It would be helpful even to have a list of the organizations that opposed prescription drug price negotiation, for example. Is the a group or publication that does this, as CSPI does for food manufacturers, for instance?

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