Patient Advocacy Organizations: Institutional Conflicts of Interest, Trust, and Trustworthiness (2013) Study

[Michael Harrop]

https://pmc.ncbi.nlm.nih.gov/articles/PMC4107906/

I've spent the past 10 months living in my car in DC, visiting the Congressional offices most days. I've seen lots of Patient Advocacy Orgs (PAOs) here. A few Congresspeople recommended I contact PAOs. I was already contacting every PAO I came across.

Unfortunately, most of them seem like businesses, only interested in funneling money to their partners. None of them have been interested in specific treatments, or research & regulatory issues. None of them seem legitimately interested in a cure.

This also aligns with my experiences & observations that researchers are not seriously trying to obtain a cure/treatment. They're simply mindless cogs in a huge industry that's in bed with the pharmaceutical industry -- the research industrial complex. This massive hundred billion dollar industry relies on people being chronically ill.

And even members of it, like Dr. Alexander Khoruts, who claims he's different and wants a cure, do not behave any differently. Neither do patients associated with him who have had devastating health conditions. They all seem to be simply trying to carve out a piece of the pie for themselves.

I found this article that supports my observations and experiences.

According to Conflicts of Interest in Medical Research, Education, and Practice, published by the Institute of Medicine (IOM) of the National Academy of Sciences, it is often difficult for an organization to balance its primary interests with its need to survive financially.

According to the handful of studies that have investigated the financial ties between PAOs and the pharmaceutical industry, between 30 and 71 percent of PAOs have such relationships.

some prominent U.S. PAOs, including the American Heart Association, received up to $23 million from the drug industry

Others, such as the Depression and Bipolar Support Alliance, reported that over half of their funding came from industry and that most of that funding came from pharmaceutical companies

groups in our survey that received no industry funding seemed to be for diseases that drug companies have little opportunity to profit by, supporting the claim that drug companies donate to PAOs for profit motives

the National Alliance on Mental Illness (NAMI), which is one of the leading nonprofit advocacy groups for mental illness in the U.S., relies very heavily on contributions from drug companies. Between 2006 and 2008, NAMI received over $23 million — about three-quarters of its donations — from drug companies

In particular, NAMI received significant donations from the manufacturers of the psychiatric medications it promoted. NAMI has long been criticized for coordinating some of its lobbying efforts with drug makers and for pushing legislation that also benefits industry.

NAMI did not disclose its financial relationships with the drug companies until government investigations uncovered the conflicts of interest.

The problem is not unique to NAMI; as stated above, detailed disclosure of industry financial support is uncommon among PAOs.

when PAOs advocate for the same things, government officials and the public are likely to assume that the PAOs are acting independently and without bias in the best interests of the people they represent

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