Are Disease Advocacy Groups Industry Fronts?

Diane Archer
JustCareUSA.org

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, 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?

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.

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%) said that they received industry support and another 13 did not disclose whether they received industry support.

Almost 8 in 10 (78%) of these organizations disclosed that they receive a minimum of $1 million from industry (39%) or did not disclose how much they received from industry (39%). Only 1 in 5 (22%) disclosed receiving less than $1 million from industry.

Moreover, almost 4 in 10 of these organizations (39%) 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.

This article was originally published on Just Care USA.


Diane Archer JustCareUSA.org

Diane Archer JustCareUSA.org

Diane Archer is founder and CEO of JustCareUSA.org, a digital platform for baby boomers and carers. She began her career in health advocacy in 1989 as the founder and president of the Medicare Rights Center.


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