Patient advocacy and support groups. Who do they work for?

Ever wondered why Integrative Medicine research never seems to be available through these groups?  An important paper published in the New England Journal of Medicine entitled “Conflicts of Interest for Patient-Advocacy Organizations” reports that 83% of larger patient advocacy groups have financial ties to drug and medical device makers.  In many cases industry reps actually sit on the board to make certain their money is well spent. This follows closely on the heels of a JAMA Internal Medicine paper published in January 2017 which found a surprising number of smaller groups received funding from the medical industry as well.

How does this play out in the real world?  ASD (autism spectrum) is a great example.  Let’s set the stage: For years, before running my own practice full time, I was funded Programs administrator for the Equilib Nutrient Protocol. These funded programs included ASD. Professor Hendren and his team from the MIND Institute which is associated with UC Davis presented our case data as a poster at the annual International Meeting for Autism Research (IMFAR) in 2006. This means a safe and no cost for 8 weeks nutrient protocol for those with Autism Spectrum had some real credibility.

When volunteering to help with a public demonstration seeking additional government funding for autism, I asked one of the organizers for permission to give out the notices re the funded programs. Her reply? “Oh no, we can’t do that. It might jeopardize our funding.”  This is an exact quote seared into my brain although I’m certain she wasn’t supposed to actually say that out loud.

 Families weren’t to be allowed knowledge of a free, safe program which might significantly help their autistic loved ones because those who hold the purse strings might be offended. In addition, the big American national autism support groups refused to even respond to emails re this funded (free) program.

A sad postscript is that Professor Hendren and I collaborated on a funding application to the National Alliance for Autism Research (NAAR) for a $200,000 grant for a double blind placebo controlled study of the Equilib Nutrient Protocol for autistic children. This went all the way to the short list where everything had to be ready to go; protocol fully developed, med management principals in place. Despite showing such safety and benefit, the funding went to gene and drug research with the potential for patents and block buster profits.

I’m not stating categorically that big pharma called the shots. However, one of the researchers commented that the result was predictable given where most of the funding for NAAR comes from.

Please note: Although the funded programs are no longer available, there are two nutrient protocols still available with money back guarantees for autism spectrum children and adults. One is available in Canada and the U.S. The other is available in most countries around the world.

For further information, feel free to call or email.

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