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Fw: *Action* Everyone - Please send Comments on LDN & CAM to IOM   Message List  
Reply | Forward Message #159 of 432 |

From: hope4joyce
Sent: Saturday, April 4, 2009 1:03 AM
To: googleldn@yahoogroups.com
Subject: [googleldn] *Action* Everyone - Please send Comments on LDN CAM to IOM

Hi everyone,

      If you could possibly make a difference in how CAM treatments are funded and viewed � would you - especially if it only took about 5 minutes of your time?  Well, the good news is that we (yes, you and me) can make a difference if we ALL take an active role!    I have included my comments that I sent tonight to the Committee below.  Please feel free to copy / paste any part of my Comments that are included at the bottom of this message that may assist you in writing your Comments to the Committee (and replace our story with your story of using LDN and/or CAM). 

      On Julia Schopick's Honest Medicine's Website (http://www.honestmedicine.com/), she has highlighted the upcoming `proposed' National Academies of Sciences / Institute of Medicine (IOM) Committee that is being formed to determine "Comparative Research of Medical Treatments".  This Committee will be a key in deciding how the U.S. Medical System will be handling up to a billion of dollars of funding.   As Julia mentions on her website, the IOM's Committee does not have any Integrative or CAM medical professional, as well as patient advocates who have been helped by CAM.  So how can the Committee effectively compare medical treatments when CAM treatments (such as Low Dose Naltrexone, Probiotics, and Antioxidants) are not even in the picture?  CAM and preventative medical has continued to show increased cost savings in both short term and long term health care � so we all need to stand up and ask that CAM treatments be FAIRLY represented on this proposed Committee (which is not currently the case).  

     Would you please consider writing your comments to the IOM and ask them to appoint to the Committee three or more Integrative / CAM medical professionals, as well as patient advocates who have been helped by Integrative / CAM medicine.  Click here to leave your own suggestions/comments about the composition of the proposed panel. (Comments will be accepted for only 4 more days � until April 8, 2009.)  As stated below, "formal comments on the provisional appointments to a committee of the National Academies are solicited (�until April 8, 2009) as described below, these comments will be considered before committee membership is finalized. We welcome your comments (Use the Feedback link below).  Please note that the appointments made to this committee are provisional, and changes may be made."

     So we have the opportunity � with enough input from ALL of us � to impact who sits on the committee!  PLEASE POST YOUR COMMENTS AND ASK FOR FAIR COMPLEMENTARY & ALTERNATIVE MEDICINE REPRESENTATION (BOTH FROM MEDICAL PROFESSIONALS AND PATIENTS!)

    

          Julia sent her comments (which are posted on her website) 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.   Additionally, here is more information from Julia's website about the Committee and her comments, as well as links to the National Academies of Sciences/IOM website:

http://www.honestmedicine.com/

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

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

http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49051

Recommendations on the National Priorities for Comparative Effectiveness Research in Health Care

Project Scope:

An ad hoc committee will conduct a study to recommend national priorities for comparative effectiveness research to be conducted or supported with funds from the American Recovery and Reinvestment Act of 2009.  The study will be informed by and extend the views of stakeholders and the recent and ongoing IOM work relevant to comparative effectiveness research such as that on the national capacity to identify what works in health care, standards for systematic reviews of evidence, and standards for developing trustworthy clinical practice guidelines.  After delivery of a report, a substantial effort will be expended to disseminate and build public interest in, and understanding of, the results of the project.

Comment on Provisional Committee Appointments



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).

Please note that the appointments made to this committee are provisional, and changes may be made. No appointment shall be considered final until we have evaluated relevant information bearing on the committee's composition and balance. This information will include the confidential written disclosures to The National Academies by each member-designate concerning potential sources of bias and conflict of interest pertaining to his or her service on the committee; information from discussion of the committee's composition and balance that is conducted in closed session at its first meeting and again whenever its membership changes; and any public comments that we have received on the membership during the 20-calendar day formal public comment period. If additional members are appointed to this committee, an additional 20-calendar day formal public comment period will be allowed. It is through this process that we determine whether the committee contains the requisite expertise to address its task and whether the points of views of individual members are adequately balanced such that the committee as a whole can address its charge objectively.

You have 4 day(s) remaining after today to provide comments during the formal comment period.

 

Here are my Comments to the Committee:

Dear NAS/IOC,

     Thank you for the opportunity to comment on the Committee selection for the "Recommendations on the National Priorities for Comparative Effectiveness Research in Health Care".  As an American tax payer, I am glad we are looking at ways to reduce health care costs and evaluate what medical treatments actually are effective.    

      However, I believe you are currently missing some key Members that can dramatically bring fairness and objectivity to the Committee.  Currently there is no representation for those Medical Professionals and patients who work and/or have been helped by Complementary & Alternative Medicine (CAM) / Integrative / and/or Functional Medicine.   That leaves a substantial gap in your current Committee's ability to FAIRLY compare treatments when there is no representation for CAM.   

      As stated on the National Institutes of Health / National Center for Complementary & Alternative Medicine website: "In the United States, approximately 38 percent of adults (about 4 in 10) and approximately 12 percent of children (about 1 in 9) are using some form of CAM".    To not have adequate representation of CAM on the Committee appears to be "Taxation with Representation" for those many Americans that have in the past or will in the future benefit from CAM treatments.  Therefore, I am respectfully asking that at the very least, 3 CAM Medical Professionals and 3 patients who have been helped by CAM treatments participate on the Committee so that CAM is representative of the American population. 

      Additionally, on 2/26/09 a Senate Committee Hearing on "Integrative Care: A Pathway to a Healthier Nation" was held.  (http://help.senate.gov/Hearings/2009_02_26/2009_02_26.html).  At the hearing, Dr. Mehmet C Oz, Dr. Mark Hyman, Dr. Dean Ornish, and Dr. Andy Weil all testified.   As part of their testimony, they spoke on the incredible cost savings in health care that is due to preventative and CAM therapies.  If this is true, then why are we not further researching and advocating for these preventative and CAM therapies on this Committee � especially since it has the potential for savings billions of dollars in U.S. Taxpayer funds? 

         Our Story with CAM:

        My 8 year old daughter has incredibly benefited by using CAM therapies.  She had 3 major illnesses � very severe food allergies, horrific eczema, and a chronic liver condition.  We sought help from many doctors without success.  I finally took an active role in researching my daughter's health treatments and sought out CAM/Integrative Medicine to get to the root of the health problem.   That's finally when we saw a dramatic turn around in her health.  She is now in outstanding health compared to where she was 3 years ago before CAM.   Our CAM doctors were key players in helping us achieve this significant turn around in my young daughter's health issues by taking an integrative medical approach � so this vital part of the medical profession needs to be properly recognized and represented on this Committee.    

     This is also a David & Goliath story of the current Big Pharmaceutical Giants against many low cost, generic drug and/or supplements that can help so many conditions where the immune system is not properly functioning.   

      We, ourselves, have seen the power of highly effective (yet low cost) Probiotics, Antioxidants, and Low Dose Naltrexone (LDN) in my daughter's improvement in her severe food allergies, raw eczema, and liver condition.  We were very fortunate to find LDN.   LDN made an immediate impact in the condition of her liver and she has made significant improvement (and no longer needs any liver drugs).  LDN cost us $20 a month, instead of the approximate $800/month for the other drug she would have otherwise taken.  That's a significant health savings, as well as the dramatic improvement in her liver condition!!  

    Naltrexone is an opioid antagonist and already approved by the FDA for other conditions such as drug and alcohol addition.  Naltrexone has also been proven (by NIH and other researchers) over the past few years to also offer great benefits to the immune system in multiple diseases (autoimmune, cancer, etc.) when used in very minimal dosages (called Low Dose Naltrexone � LDN).  The University of Pennsylvania (Hershey Medical School, Dr. Ian Zagon, Dr. Jill Smith, and others have been doing significant medical research into this area for years.  Last year, a LDN Crohn's Study was released where 89% showed improvement in their condition and 69% of the Crohn's patients went into remission (and this at the cost of approximately $1.00 a day -- yes...that's 100 pennies)!

         Regular dose Naltrexone was already FDA approved many years ago, and is now in the generic stage where it is so cheap.  LDN must be compounded to make it approximately 1/10 to 1/15 of the regular dosage of Naltrexone.  Therefore, there is no profit in any drug company doing any of the clinical studies for LDN for any medical condition since it can already be used in an 'off-label' use.  That means that most clinical studies specific to LDN will be sponsored by the Government (such as National Institutes of Health, NIH).

     Therefore, I am also asking that more research funding be provided for CAM therapies such as Low Dose Naltrexone, Probiotics, Antioxidants, etc.  No Pharmaceutical company can make large profits from these generic and very low costs items.  Isn't it time that CAM treatments that can help people with little side effects and at a very low cost also be offered to Americans?

     To summarize, I am respectfully asking that at the very least, 3 CAM Medical Professionals and 3 patients who have been helped by CAM treatments participate on the Committee so that CAM is fairly represented.  Additionally, please secure funding for more CAM treatments, including Low Dose Naltrexone, Antioxidants, and Probiotics. 

   Thank you very much!    

    



Sat Apr 4, 2009 8:10 pm

dudley_delany
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... From: hope4joyce Sent: Saturday, April 4, 2009 1:03 AM To: googleldn@yahoogroups.com Subject: [googleldn] *Action* Everyone - Please send Comments on LDN &...
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