Julia Schopick’s Comment on the Institute of Medicine’s Proposed Panel: Comparative Effectiveness Research of Medical Treatments

I just posted the comment below to the Institute of Medicine (IOM), recommending that they include people with knowledge of integrative medicine on their panel that will be comparing the effectiveness of medical treatments. Click here to leave your own suggestions/comments about the composition of the proposed panel. (Comments will be accepted until March 23, 2009.) At the end of this posting, I'll give links to other websites with relevant information about this issue.

I urge you to access the above link and offer your own input to the IOM about this very important issue.

TO: The Institute of Medicine

I would like to thank the Institute of Medicine (IOM) for giving me this opportunity to submit my comments and recommendations concerning this panel, which has been slated to make recommendations for the $1.1 billion earmarked for comparative effectiveness research of medical treatments.

In my opinion, it is important to have the right people in on the job from the very beginning, so that the a full range of treatments will be compared, once the real comparative effectiveness research begins.

When I looked at the names on your site of the selected panelists, I could not help but notice that TWO very important groups are not being represented:

1) As has been pointed out by the Center for Science in the Public Interest, there are NO TRUE PATIENT OR CONSUMER REPRESENTATIVES on the panel. In their words, “the only patient or consumer representative named to the panel’s tentative roster was from the Alzheimer’s Association, a single-issue patient advocacy group that RECEIVES SUBSTANTIAL SUPPORT FROM THE DRUG INDUSTRY.” (A coalition of 20 consumer, public health and patient advocacy groups has written to the Institute of Medicine, asking that at least three consumer representatives be added to the panel.)

2) Also, and of equal importance: There are NO MEMBERS ON THE PANEL WHO ARE EITHER CAM PRACTITIONERS, OR CAM ADVOCATES. (By the acronym CAM, I am referring to complementary/holistic/”alternative”/integrative practitioners and patient advocates.)

I was amazed at (and extremely surprised and troubled by) both omissions. But I find the SECOND omission especially puzzling, since in late February, two extremely exciting events took place:

(a) First, the IOM convened a 3-day Summit on Integrative Medicine and the Health of the Public, which was attended by hundreds of people from across the country, excited at the prospect that the new healthcare system would include CAM treatments. The consensus was that the effective use of CAM treatments would save our healthcare system HUGE amounts of money. (Here is a description of this Summit, which integrative healthcare activist and Huffington Post blogger, Alison Rose Levy, called “groundbreaking.” You may also listen to audios of all the speakers’ presentations.)

(b) During the same week, Senate hearings were convened, with several integrative healthcare luminaries testifying. For a video of the complete hearing, go here. 

I would like to suggest that speakers at this hearing, including Drs. Andrew Weil, Mehmet Oz, Mark Hyman and Dean Ornish (as well as several of the Summit speakers and attendees), would be excellent additions to this IOM panel.

As a matter of fact, each of these four practitioners offered publicly to serve the administration in any capacity in which he might be asked to contribute.

In addition to these very well-known integrative practitioners, there are also many, many other people
-- some, but not all, of whom are not as well known -- who have been equally active in bringing integrative medicine to the forefront. For instance:

1) Ronald Hoffman, MD –- For 30 years, one of this country’s foremost integrative physicians. Dr. Hoffman uses the best treatments from both conventional and alternative medicine to provide truly integrative (or as he calls it) “intelligent” care. Dr. Hoffman is Medical Director of the Hoffman Center in New York, author of several books about integrative medicine, and has a very popular daily radio program, Health Talk, on WOR-Radio in New York. (To listen to Dr. Hoffman's interview with Honest Medicine, click here.)

2) Burt Berkson, MD, PhD -- Famous in the integrative medicine community, Dr. Berkson is a pioneer in the use of several low cost, non-toxic treatments (e.g., intravenous alpha lipoic acid and, more recently, also of low dose naltrexone), to successfully treat conditions as far-ranging as chronic liver disease, autoimmune diseases (e.g., MS, lupus, rheumatoid arthritis), and even some cancers. In the 1970s, the NIH was very supportive of Dr. Berkson’s work with intravenous alpha lipoic acid, and under their auspices, several scholarly papers were published on his work. In the end, however, interest in Dr. Berkson’s work with these kinds of non-pharmaceutically based treatments, waned. (Many integrative practitioners have expressed the belief that this eventual lack of interest in Dr. Berkson’s work stemmed from the fact that no one [read “Big Pharma”] would be able to make “big money” on these inexpensive treatments, and therefore, no costly trials were ever funded.)

I recently conducted an interview with Dr. Berkson for Honest Medicine. I hope you will listen to it. It is both fascinating and mind-opening. You will also find a transcript of the entire interview there -- complete with links to several of Dr. Berkson’s published papers.

3) Jim Abrahams, Hollywood writer/director (“Airplane,” “Naked Gun,” “Hot Shots”) and president of the Charlie Foundation, has worked tirelessly for many years to educate medical professionals and the public, in order to bring the Ketogenic Diet into the mainstream as a respected treatment for epilepsy. This diet, which has been championed by Johns Hopkins since the 1940s, has cured thousands of children throughout the world (including Jim Abrahams’s son Charlie) of intractable epileptic seizures, when expensive, toxic drugs would not. Jim is tireless, dedicated and brilliant. (To read an article that cites Jim's tireless efforts, click here.)

In addition, there are countless other holistic/integrative practitioners and healers –- some are MDs, others are not –- as well as thousands of patient advocates of every stripe, who are NOT connected with big institutions OR with Big Pharma, and hence, have none of the baggage that may possibly be held by some of those on this IOM comparative effectiveness panel. (Many people at both February integrative healthcare events expressed the hope that Big Pharma would not be a major player in the new Healthcare Plan.)

The IOM panel as it now stands was described by the Center for Science in the Public Interest as “five physician specialists, three medical technology assessment experts, three insurers (two of which are also provider networks) and three officials currently or formerly associated with Medicare.” Every one of the panelists is connected with a mainstream professional medical organization and/or a large institution. As we now know –- from the many books and articles that have been written in recent years, which have exposed Big Pharma and Big Industry’s influence -- it is a sad fact that far too many of our mainstream medical institutions and physicians unfortunately have pharmaceutical-company  connections.

Hasn’t the time finally come to include people who are more independent -- as well as representative of more diverse points of view -- in the discussion?

I hope you will call on me to lead you to possible people to add to the panel, so that it will include some of the voices who have –- thus far –- been muted. I also hope that I can play my part in making the Obama Health Plan more all-inclusive.

Thank you very much. I hope to hear from you.
Julia Schopick
www.HonestMedicine.com

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I made one major suggestiong on the Recommendations on the National Priorities for Comparative Effectiveness Research in Health Care website. I have submitted an idea to the survey tool about comparing the effectiveness of various cell culture and genetic assay technologies for targeted as well as conventional cancer treatment. The purpose of the study would be to show what cell culture or genetic assay technologies really work.

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Hi Julia & everyone,

I wanted to let people know the 23 March deadline has been extended. The Membership Committee was posted on 3/19/09, so according to the below, comments will be accepted up to 20 days after that. So people still have time to comment.

Per the NAS website, it states "Viewers may communicate with the National Academies at any time over the project's duration. In addition, formal comments on the provisional appointments to a committee of the National Academies are solicited during the 20-calendar day period following the posting of the membership and, as described below, these comments will be considered before committee membership is finalized. We welcome your comments (Use the Feedback link below).

Here's the website address to see the committe and the feedback section is at the bottom of the member's page: http://www8.nationalacademies.org/cp/committeeview.aspx?key=49051

Thanks, Julia, for alerting us to this and for your continued advocacy.

God Bless You ~~ Joyce

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