Report on the ASCO/ACS joint symposium on Alternative and Complementary Therapies and Oncology Care, May 14th, 1999 in Atlanta, GA This was an historic gathering which was supposed to be part of a video symposia held one day before ASCO's full annual meeting. I am not sure it was in fact videotaped at all. David Rosenthal, MD, immediate past president of ACS introduced the topic by reporting on patient surveys. He said that many of the surveys done on use of complementary and alternative medicine (CAM) show at least a 50% estimated use of these modalities (all inclusive). ACS survey showed 42%. Cancer patients, unsurprisingly, make up a large part of this group. The first speaker was Dr. Arnold (Bud) Relman, MD, Editor-in-Chief Emeritus, NEJM(New England Journal of Medicine), and Professor Emeritus of Medicine and Social Medicine, Harvard Medical School. With those impressive credentials, Dr. Relman proceeded to demonstrate his ideological preferences as he spoke. He told the audience that oncologists should open a dialogue with patients about complementary/alternative medicine. He then said that docs should tell the "truth" that most of the therapies are unproven and inherently unlikely to be of benefit. The position of The Annie Appleseed Project is that unproven has been shorthand for not enough studies, and therefore still open to research before any decision is made that it is unlikely to be of benefit. Dr. Relman then said that patients should be told the truth about their disease and the response to (conventional) treatment and prognosis. To deny this information to a patient would be patronizing and to keep adult patients in ignorance is wrong, unless they make it clear they do not want to hear it. He was referring to giving patients the doctors' estimate of how long they had. On the other hand, he said, the patients need support and there are unpredictable variations in cancer so there is always room for hope. Encourage that hope. Stand by the patient no matter what choices they make or the clinical course of their disease. He does not believe that doctors should recommend, endorse or administer any alternative medicine, especially when it is scientifically doubtful. If the patient is terminal or has strong opinions on this, doctors should not object to the patient's choices. He said doctors should not be judgmental, dismissive or patronizing. Doctors might get useful information or experience. However he stated that he thinks the use of alternatives undermines the ethos of objective scientific situations. Media covered Dr. Relman's talk by stating that he suggested that doctors talk to their patients about alternative medicine. Again, The Annie Appleseed Project thinks he is confusing several issues. It is most necessary for patients' well-being that alternative cancer therapies be scientifically evaluated. In the 6 years since The Project began, only a few very small studies have been done. We, as patients, require an immediate boost in the number and quality of this research. Mary Ann Richardson, PhD, of the University of Texas Center for Alternative Medicine spoke at length about the several studies her center (funded by the [now] Center for Alternative Medicine at NIH) has begun. They are doing patient based trials of herbal formulas and other substances that look efficacious. Robert Wittes, MD, Deputy Director for Extramural Science and Director, Division of Cancer Treatment and Diagnosis spoke next. He began by responding to a question addressed to Relman. Relman had stated that Western medicine is based on scientific evidence. This writer, Ann Fonfa, had objected thinking about just one aspect-the use of blood transfusions for trauma which has recently been the subject of study and was shown to be an inappropriate treatment. Relman had then stated that the questioner was incorrect. Wittes said of course there were areas that had not been studied but simply followed as tradition of a sort. Breast cancer patients know this very well. Wittes said his group is soliciting "best cases" evidence from CAM practitioners. He said that the "quack" list or "unproven therapies" list formerly maintained by the ACS for NCI was written in highly prejudicial ways. This list has been removed from the NCI website. Note: Ann Fonfa examined how this list was maintained in the past. One researcher used to try and find other studies to support the work of the subject/scientist in question. If there was no other supporting evidence, the material was deemed unproved. An example of this would be the textbook published by Emanuel Revici, MD in 1961. Three months later his work was placed on the "unproven" list. I cannot imagine that any studies were conducted by other scientists or clinicians, so it was on the basis stated above that his work was discounted. Not an appropriate standard from where I am standing! Dr. Wittes said there was a growing practice of the science of nutrition, stress reduction and natural substances. He did point out an area that patients need to be concerned about. Several studies have shown that some supplements do NOT contain what the label states. This is an important issue. We want the protection of FDA without these products having to meet the same standards as pharmaceuticals. There are companies now which call their products neutraceuticals. These are intended to be standardized dosage and more reliable. Jane Henney, MD, Commissioner of the FDA spoke to this issue as well. Daniel Nixon, MD, Associate Director, Prevention and Control, Hollings Cancer Center Medical University of South Carolina and new head of the American Health Foundation spoke. He talked about his nutritionally oriented research focused on colon cancer. His group has shown that ellagic acid, found in raspberries, strawberries, mangoes and papayas can actually change premaligancies to normal cells. The work has only been done in healthy volunteers but should clearly take the next step to clinical trials for patients. Dr. Nixon is also the past president of NOAT (Nutritional Oncology as Adjuvant Therapy), a group I belong to as well as Barrie Cassileth, PhD. Barrie Cassileth, PhD is Adjunct Professor of Medicine, University of North Carolina, Chapel Hill and the new head of Memorial Sloan Kettering's Complementary Center. The planning for this was begun by Abby Bloch, former head of Nutrition at Sloan as well as Sidney Winauer?), a colon cancer specialist whose wife died of stomach cancer. He has written a book about her experiences with complementary therapies. Dr. Cassileth is well known for her many years of writing about quackery in the CAM field. She mentioned that a Sloan researcher had found that Vitamin C at high doses could feed a tumor. This research remains unpublished and has been referred to for many years by Larry Norton, MD among others. The use of high doses of a single vitamin ARE NOT RECOMMENDED. Still, it would be useful to see this work published so it could be peer-reviewed and evaluated. I suggested to Dr. Cassileth (whom I know from NOAT), that looking at individual vitamins was a mistake and that the time had come to look at a combination. She asked me what studies I was basing that recommendation on. Since she and I and Dan Nixon belong to NOAT, she actually knows the research as well as I do. Telling this audience the story of a young woman who used juicing and supplements and then died of her disease was just one of the unscientific things she said. I thought of all the friends I had lost who had done conventional therapy. Neither approach is helpful for dialogue and I felt her statement was highly inappropriate in that forum. There was a patient panel consisting of Susan Leigh, RN, Past President, National Coalition for Cancer Survivorship; Wendy Harpham, MD, Presbyterian Hospital of Dallas; and William Fair, MD, head of the Prostate Diagnostic Center at Memorial Sloan Kettering. Dr. Fair recently spoke at SHARE in NYC, and has been interviewed for magazines and television about his use of complementary therapies. Each of the three panelists spoke about their personal experiences with either conventional treatment, complementary or both. The presentation was very interesting and gave insight into how patients, even medically trained patients, make their treatment decisions. ASCO/ACS Symposium on Integrative Medicine, 2001 May 11, 2001 San Francisco, CA ASCO CAM 2002 May 17, 2002 Orlando, FL CAM-Viewpoint of Wendy S. 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