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patient advocacy groups: big pharma has their grubby little fingers in every aspect of medicine


Patient Advocacy Groups

According to Wikipedia, Patient Advocacy is defined as,

an area of specialization in health care concerned with advocacy for patients, survivors, and their carers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders.

Typical advocacy activities are the following: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, support and education of patients, survivors and their carers, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organizations of health-care professionals, the educational world, and the medical and pharmaceutical research communities.

Think of it like this; if you were involved in some sort of legal dispute and needed to hire an attorney, the last thing you would want is your attorney (your ‘advocate’ before the court) to be working for or collecting money from the other side. Unfortunately, this is exactly what’s happening with PAO’s (Patient Advocacy Organizations). The groups were first formed in the 1950’s over concerns the general public had about CERTAIN ‘SECRET’ EXPERIMENTS (and not so secret experiments) mostly in the field of CANCER.  And as is often the case, the more things change, the more they stay the same.  Especially true in the field of EVIDENCE-BASED MEDICINE.

Does anyone remember back in the mid 2000’s when the ADA (American Diabetes Association) was busted for endorsing candy-maker Cadburys-Schweppes (similar to THIS FIASCO)?  Of course there was money changing hands.  Or what about more recently when the American Heart Association was giving their stamp of approval (“Heart Check Mark”) to certain Campbell’s Soups that did not fall within their very own “heart healthy” guidelines? Now we learn from two brand new studies that BIG PHARMA has been pouring money into Patient Advocacy Groups of all kinds for decades. 

About six weeks ago the Journal of the American Medical Association (JAMA) published a study called Patient Advocacy Organizations, Industry Funding, and Conflicts of Interest, concluding that,

Of the 439 surveys mailed to PAO leaders, 289 (65.8%) were returned with at least 80% of the questions answered. The median total revenue among responding organizations was $299,140. A total of 165 of 245 PAOs (67.3%) reported receiving industry funding, with 19 of 160 PAOs (11.9%) receiving more than half of their funding from industry.

The median amount was $50 000 and the median proportion of industry support derived from the pharmaceutical, device, and/or biotechnology sectors was 45%.  A total of 220 of 269 respondents (81.8%) indicated that conflicts of interest are very or moderately relevant to PAOs.  A total of 22 of 285 PAO leaders (7.7%) perceived pressure to conform their positions to the interests of corporate donors.

If you don’t grasp how big this really is, you need to read it until you do.  82% of the Patient Advocacy Groups readily admit that ethics and Conflict of Interest (COI) are highly important to what they do. However, they continue to “conflict” away, pocketing millions upon millions of dollars from the very groups they are in many cases supposed to be advocating against.  And as to the number of these organizations that are essentially being ‘threatened’ if they don’t goose-step along with their donor’s wishes; my guess is that in similar fashion to what we see with DRUG SIDE-EFFECTS, the true numbers are being vastly under-reported.  But the fun doesn’t end there.

Not to be outdone, just yesterday the New England Journal of Medicine published a similar study of their own called Conflicts of Interest for Patient-Advocacy Organizations.  In it they revealed that after their, “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.”  This whole thing can be likened to my attorney defending me, while sitting on the Board of Directors of the very company who I am in battling in court.  But honestly, are you surprised?  If so, I have this bridge in Brooklyn that I’d just looooooove for you to have.  Today only, it’s half price!

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