The First Public Meeting of NCCAM, July 8, 1999



Ann Fonfa's testimony

I am a woman living with breast cancer since a diagnosis in January 1993. I serve on the Etiology Working Group of the National Action Plan on Breast Cancer. For the last six years I have been running a study group for patients interested in CAM and cancer. I have tried to bridge the gap between health care providers and patients at all levels.

I believe strongly in access to all options for cancer patients. My thoughts have been guided in this by the knowledge that conventional therapy has NOT been as successful as was once hoped.

Indeed mortality rates have not been strongly impacted by the current therapies, particularly chemotherapy. Everyone knows there were about 5 cancers that responded well. But for the rest of us, it has not proved as powerful a resource as once hoped.

Additionally, I believe that what a person eats has a strong influence on health. Epidemiological and other studies have demonstrated this in many ways. One of the most striking is the research on immigration and emigration and the American diet.

I ask you to consider several factors as you discuss CAM today:

1) The need for a total protocol to be developed and researched. FDA has insisted for years that we must explore the active ingredient in a substance that looks efficacious. This may not be the best method, especially for natural, non-toxic substances. Let us look instead at the whole product like food or combinations of foods.

2) Vitamin therapy has also been looked at as individual vitamins. Smaller studies have demonstrated that combinations of vitamins can be much more efficacious. Letís follow that up with a look at a panel of vitamins, particularly the antioxidants.

3) In a recent discussion, a pharma rep told me that there was a study being conducted on acupuncture that was using the "real" points versus "fake" points. I am not at all sure this is a useful study. We know NOTHING about doing acupuncture this way, but have thousands of years of study doing it as the Chinese do. Why not measure the success of a treatment with needles versus the success of existing or another experimental treatment?

4) Herbal formulas-thanks for funding UT/CAM studies on Essiac and Hoxsey. T his may greatly enhance our knowledge as these are combination formulas. Additionally, these are things actual cancer patients are currently using. That matters a great deal. But a study is being conducted on Tibetan herbs using 6 formulas and about 30 women with breast cancer. How can we be sure that this particular group of women will respond to those formulas. Since Eastern medicine is based on a personalized formula, this may confound or at the least influence the trial. I am concerned.

5) Another area of concern is this: I had heard in 1997 that the vast bulk of calls to your offices was about cancer. Yet the funds spent were hardly comparable to that. I have a concern that not enough is being focused on cancer. This is an area that kills over 500,000 annually and is said to affect one out of two men and one out of three women in their lifetimes. And it is increasing in many areas.

6) I suggest that every study sponsored by FDA have an arm for people using natural and non-toxic products like dietary supplements or nutritional interventions or herbal formulas. We could see if that group looked good, or better. Then further studies could be designed. We need more information.

7) I urge you to include the public and give much more notice about meetings of this ilk. I also ask that you coordinate with FDA and its Dietary Supplement controversy. Government agencies need to communicate fully and be involved on issues that overlap.

I apologize to the group for being unable to be here in person. I ran out of money and energy today. I will continue a dialogue with you. I appreciate the opportunity to have my voice heard here today.

Completely without profit, all help to cancer patients is free and done for love.

Ann Fonfa is the founder of www.annieappleseedproject.org

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