NEW YORK—Medical freedom of choice and the demand that conventional allopathic medicine meet natural medicine on its own terms were recurrent themes at the New York City “Town Meeting” of the White House Commission on Complementary and Alternative Medicine Policy.

The Commission, headed by James Gordon, MD, was established last March by former President Clinton to develop national policy for the evolution of “complementary and alternative” medicine. Dr. Gordon believes the Commission’s final report, due in 2002, could have as much impact as the Flexner Report had nearly 100 years ago. An interim report is expected this summer.

To better identify key issues, the Commission has held open public hearings in major cities around the country. Individuals wishing to speak are given 3 minutes to speak their minds to the 18-member committee of health care givers, clinical researchers, and health policy makers.

The marathon NYC meeting lasted well over 12 hours, and included roughly 200 speakers representing extremely diverse backgrounds and experiences. The following “words from the front” give some sense of what is on the minds of patients, practitioners, and policy-drivers engaged in re-defining American medicine.

“The new recognition of alternative practices (by allopathic medicine) is a step forward. It should be encouraged, but it should not be an excuse for promulgation of new regulations … for stifling of creative healing.”

—Simone Charlop, patient, New York City

“Please do not advocate the spread of traditional (allopathic) regulatory models for these services. Let the providers disclose their qualifications to me as a consumer, and then let me choose. In my experience, that power (licensure and regulation) operates more to limit the supply of practitioners and drive up their costs than it does to uphold the quality of the work done. ‘Big Brother’ is not needed.”

—Carolyn Ryder, attorney at law, Red Hook, NY

“Americans are frustrated with a system that puts someone else—either private or public sector bureaucracy—in charge of dictating what health care they will or will not receive. … Until we get financial power back into the hands of the American people, these frustrations will continue to grow.”

—Grace Marie Arnett, President, The Galen Institute (www.galen.org), Alexandria, VA

“We learned early on, when my son was first stricken … that after he was admitted to a hospital, we as parents had no legal right to be involved with the doctors or the treatment process. If we stood in opposition to a suggested treatment … we could be imprisoned for child abuse or medical neglect, and our child taken and treated against our will. The greater horror was the fact that if, in the process, our son died, there was no civil or criminal liability on the part of the doctors or the medical institution. If you have ever read the insert for the chemo drugs used on children, it says in plain English that it has not been proven safe or effective in pediatric application. Why then, are we forced … to subject our children to these treatments that could cost them their lives? The question boils down to this: Who decides?”

—Thomas Navarro, father of 5-year-old boy with medulloblastoma, Hawley, PA

“Physicians who practice outside orthodox norms are marginalized, if not investigated, resulting in a fear-based culture, patient hesitation, and confusion. We need to stop private medical and dental associations from using the power of state, through licensing boards, to enforce narrow medical protocols and stifling competition in the name of fighting fraud.”

—Camilla Rees, patient, New York City

“Please instruct the conventional community that “CAM” is not a specialty. It is not a sideline. It is a different paradigm completely. And it is different from the moment the patient walks into the room.”

—Monica Miller, Esq., Director of Government Relations, Foundation for Advancement of Integrative Medicine (www.faim.org)

“The single largest source of waste (in medicine) is the neglect of … teaching consumers and providers the time-tested, evidence based practices of self healing and health promotion. Insurance reimbursement for mind-body programs that teach self healing should be pursued.”

—Joseph Loizzo, MD, Department of Psychiatry, Columbia Presbyterian Eastside

“What we’re really talking about is holism, not simply integration of “exotic” techniques into conventional medicine. All alternative healing systems, whether ancient or modern, and no matter how much they differ, share one perspective: that illness is the result of imbalance or disharmony. That is consistent with science, and really needs to be incorporated into the approach that is taken.”

—Leo Galland, MD, Foundation for Integrated Medicine, New York City

“We need to go way beyond the common aspects of “CAM,” and be very careful not to “CAM-up” the current fatally flawed system. We need to build a new foundation, one that acknowledges, honors, and values health and the profound ability we have to heal ourselves and others. We need to empower people to be self-responsible and to learn to care for themselves.”

—Mark Hoch, MD, secretary, American Holistic Medical Association (www.holisticmedicine.org)

“It is very risky for a medical scientist to make the transition from conventional research to CAM research. You may lose the opportunities to publish, to get grants, and to get promotions. You may even lose your job completely. The school may not directly oppose you, but they will kindly warn you about the huge risks. If about one-third of university budgets come from pharmaceutical companies, a school would not risk losing those funds by supporting research that may have obvious conflicts with pharmaceutical industry. When I expressed my interest in research of Qigong, the reaction from one of my vice-chairs was to question my prowess as a scientist.”

—Kevin Chen, PhD, MPH, Asst. Prof. of Psychiatry, UMDNJ, Newark

“No IRBs should ever permit high-dose chemotherapy on human participants without the support of after-care services.”

—Sherri Margalit, breast cancer patient, Director, SHARE, New York City (www.sharecancersupport.org)

“We all combine various elements. Patients’ real life regimens should be studied under conditions approximating their use in our real worlds. A study of coenzyme Q10 with anthracycline chemotherapy to reduce cardiotoxicity might yield very useful information. I’ve heard it said in clinical trials that there were ‘no unexpected effects’ (from chemotherapy). Calling them ‘side effects’ is a great marketing tool, but when they’re happening to you, they’re not side-effects. They’re just there.”

—Ann Fonfa, breast cancer patient, Director, Annie Appleseed Project (www.annieappleseedproject.org), New York City

“Eight-hundred years of (Chinese) documenters say Ma Huang (ephedra) cannot be used as a single herb. You have to use it in certain formulas or the patient will have problems like heart beating too fast or bleeding problems or over-sweating. Not all people can use Ma Huang. But here, people use it as a single herb for weight loss. Of course you will have problems.”

—Ming Jin, L.Ac., practitioner of Traditional Chinese Medicine

“Recently, there have been some misleading reports about the dangers of certain Chinese herbs. … A number of kidney failures were reported in Belgium after patients took cocktails of drugs and herbs—including Fen-Phen—for weight loss. Who prescribed them? Licensed MDs … who knew little or nothing of Chinese herbal medicine, evidenced by the fact that the herbs are never used (in TCM) in that form for that very reason (toxicity).”

—David Molony, President, American Association of Oriental Medicine (www.aaom.org)

“MDs are allowed to do whatever they like in terms of practicing certain forms of “CAM.” I have found doctors who barely know how to pronounce ‘Ayurveda,’ who are calling themselves Ayurvedic doctors. My main work as an educator and healer comes not from the institutions where I’ve been granted my degrees, but from the forests and the bush and the mountains—the places where the healers actually teach people who will sit at their feet and learn. Will we listen to the Grandfathers who know how to practice holistic medicine … people who have been practicing 30 or 40 years? Or will we pay attention to doctors who have taken a 2 month certification course and now decide that they can be the head of a “CAM” department?”

—Bhaswati Bhattacharya, MA, MPH, MD, Dept. of Rehabilitative Medicine, Columbia College of Physicians & Surgeons (http://cpmcnet.columbia.edu/dept/rosenthal)

“The acronym CAM should not stand for ‘coopting alternative medicine!'”

—Frances Brisbane, SUNY Stony Brook School of Social Work

Complete transcripts of the New York “Town Meeting,” as well as others in the series, can be viewed and downloaded from the White House Commission’s website at: www.whccamp.hhs.gov.