MS Speaks

Whether the National MS Society is one of the patient-advocacy organizations considered in this article is unknown but its findings substantiate something I've often wondered about. Sadly, many patient-advocacy organizations or disease groups have ties with the drug industry that are much too strong.

In JustCare, Diane Archer summarizes the findings of the New England Journal of Medicine article, "Conflicts of Interest for Patient-Advocacy Organizations":

Are disease groups industry fronts?

March 8, 2017
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.

This much of the article is currently available at the New England Journal of Medicine. Later the entire article will probably be accessible.

Conflicts of Interest for Patient-Advocacy Organizations
Matthew S. McCoy, Ph.D., Michael Carniol, M.B.A., Katherine Chockley, B.A., John W. Urwin, B.S., Ezekiel J. Emanuel, M.D., Ph.D., and Harald Schmidt, Ph.D.
N Engl J Med 2017; 376:880-885March 2, 2017DOI: 10.1056/NEJMsr1610625

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In this examination of 104 large patient-advocacy organizations, 83% receive financial support from drug, device, and biotechnology companies, and industry executives often serve on governing boards. The authors recommend more transparency about industry involvement.

I agree, ssalimi.

I've removed the duplicate post of yours in this thread.