Getting the Word to Washington About What REAL Comparative Effectiveness Research Would Look Like

As followers of Honest Medicine know, I have personally witnessed and reported on the outrageous amount of money that is being wasted by our healthcare system on expensive treatments that don’t work, while at the same time, ignoring inexpensive, non-toxic treatments that do work. (For two examples, please read here and here; and please take your time, while reading these articles; their contents will trouble, even shock, you.)

Because I have personally witnessed this kind of waste, I am very much in favor of the Comparative Effectiveness Research (CER) that is being championed by the Obama Administration. A lot of money and three government agencies are being committed to this research. According to this March 16, 2009 Washington Post article, the $1.1 billion stimulus funds will be divided among 3 government bodies: the Agency for Healthcare Research and Quality will receive $300 million of the funds, while HHS and the NIH will divide the remainder. Also according to the Washington Post article, “Experts at the Institute of Medicine will spend the next several months prioritizing the research.” And, “For now, Obama has stopped short of advocating coverage decisions that combine clinical finding with cost effectiveness.”

All of this sounds very even-handed; very well-thought out. So, why am I afraid that -- although the administration’s words suggest that they understand that this waste exists, and that it must be controlled -- other evidence suggests that the only treatments that will be compared for effectiveness are the “same old same old” treatments that are considered to be “standard of care”? (Of course, treatments that are considered “standard of care” have undergone the “gold standard” of double-blind randomized clinical trials that have been paid for and supervised by Big Pharma! A troubling puzzle.)

Why am I concerned that only the “same old same old” treatments will be studied?

For a few reasons. First, as I have written about before, even the panel that has been proposed by the Institute of Medicine to assess the CER has no representatives from the public who are without financial ties to Big Pharma; nor does it contain ANY representatives of non-pharmaceutical treatments, such as integrative medical treatments. (See my “Comment on the Institute of Medicine’s Proposed Panel: Comparative Effectiveness Research of Medical Treatments.”  The same criticism applies for the members of the Federal Coordinating Council for Comparative Effectiveness Research that was recently named by HHS. 

Recently, to spread the word about my concerns beyond Honest Medicine, I have been leaving comments on some highly respected, high-traffic blogs and websites, about the proposed Comparative Effectiveness Research (CER), and about the fact that I am worried that the CER will NOT include more sensible, less expensive, NON-Big-Pharma based therapies, such as those I have described in articles (here and here) and in audio interviews (here, here, here and here).

I have left these comments on several blogs and websites, including the Our Bodies Ourselves Blog (OBOB), created by the Boston Women’s Health Book Collective (BWHBC), the nonprofit, public interest women’s health education, advocacy, and consulting organization that has inspired the women’s health movement, since the publication of its first edition of the book, Our Bodies, Ourselves in 1970. (See my OBOB comment here.) I have also left similar comments on the Health Care Organizational Ethics Blog, and on the About.com Health Insurance site.

Each of my blog comments has been tailored to the CER-related posting being commented on, but they all contained some common information.

I am reprinting a variation of one of my comments here -- complete with hyperlinks to some important backup information, which I hope you will want to check out for yourselves.

COMMENT:

As a medical advocate, and also as the widow of a 15-year brain tumor survivor, I have personally witnessed a HUGE amount of waste in our medical system. I am therefore an ardent proponent of Comparison Effectiveness Research (CER), because I believe that we as a society must start to keep medical costs down. If we don’t, our healthcare system will surely go broke. CER could provide a much-needed answer.

However, I have some tremendous concerns about exactly HOW the treatments will be compared and -- just as important -- WHICH treatments will even be considered for comparison.

I fear that the CER will end up recommending more of the “same-old-same-old” kinds of treatments; it’s just that they will be less costly versions! In other words, I fear that some of the far less expensive, yet very effective, lifesaving treatments -- whose only crime is that they do NOT have pharmaceutical ties and/or funding -- will be totally omitted from the research.

I don’t think that ANYONE so far -- at least anyone in the Obama Administration -- has adequately addressed this point.

I am referring here specifically to two kinds of treatments: (a) “alternative” treatments, including diet, vitamins and the many healing modalities; and (b) lots of other treatments -- many of which are “science-based,” but are, unfortunately, often labeled as “anecdotal.” The treatments I am referring in this second group are called “anecdotal” for only one reason: because they haven't gone through the billion+ dollar double-blind randomized clinical trials. (And as most of us know, the majority of these “trials” are conducted and paid for by Big Pharma!)

I have interviewed pioneers in the successful use of several of these science-based, so-called-“anecdotal” treatments on my website, HonestMedicine.com. The specific treatments I have written about so far are: LOW DOSE NALTREXONE for autoimmune diseases, such as multiple sclerosis and lupus; the KETOGENIC DIET for pediatric epilepsy; and INTRAVENOUS ALPHA LIPOIC ACID, for diabetic neuropathy and organ regeneration. Each of these three treatments has been helping thousands of people with very serious, often life-threatening conditions for OVER THIRTY YEARS. (You may read about them on my website.)

Why, then, don’t I think that these treatments (and others like them) will be included in the comparative effectiveness research?

For proof that my suspicions are well-founded, all you have to do is watch this video of the recent Senate Hearings on Integrative Medicine and the new health plan, where Drs. Mehmet Oz, Mark Hyman, Andrew Weil and Dean Ornish testified.

There, you will find the following interchange between Dr. Mark Hyman and Sen. Tom Harkin (at 142:00 to 142:36) :
 
DR. HYMAN: (re Comparative Effectiveness Research): "What are we comparing things TO? Drug to drug? Procedure to procedure? Or are we comparing the current medical practice with the best available things we're talking about [e.g., integrative treatments]?"
 
SEN. HARKIN: "I'm afraid -- I share your fear -- that it's going to be a comparative analysis between this treatment and that treatment.”
 
DR. HYMAN: "Within the allopathic model."

And by the way, without stating it, when he refers to the “allopathic model,” Dr. Hyman is, of course, referring to the PHARMACEUTICAL COMPANY MODEL. It’s the only model the American Medical System acknowledges.

Please listen to my interview with Dr. Burt Berkson (MD, PhD), pioneer since the 1970s of the use of Intravenous Alpha Lipoic Acid. In it, Dr. Berkson speaks eloquently about how our medical education system teaches doctors NOT to be curious about more innovative, less expensive treatments -- such as the three I have written about, both here and on my website.

I realize that my comment here contains almost "too much information"! But I hope that you will check out all my links, and join with me to help get "the word" to the folks that will be administering the CER in Washington, DC.

I wish us ALL the best of luck with our new healthcare system!

Thanks very much.
Julia Schopick
www.HonestMedicine.com

 

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