Date: Thu, 31 Aug 1995 13:06:25 -0700 (PDT) From: "John S. James" Subject: AIDS TREATMENT NEWS #230 AIDS TREATMENT NEWS Issue #230, September 1, 1995 phone 800/TREAT-1-2, or 415/255-0588 CONTENTS: Acupuncture and Chinese Medicine; Interview with Tom Sinclair, L. Ac. Hydroxyurea and ddI: French Study Published Thalidomide: New Expanded Access for Wasting d4T Dose Clarification San Francisco: Viral Load Trial Offers Free Tests National AIDS Treatment Advocates Forum, October 15-18, Los Angeles National Skills Building Conference, October 19-22, Los Angeles Surrogate Markers Meeting, October 16-18, McLean, Virginia Next AIDS TREATMENT NEWS Delayed One Week Health Insurance: Widespread Copayment Abuse ***** Acupuncture and Chinese Medicine; Interview with Tom Sinclair, L. Ac. by John S. James Thomas M. Sinclair, M.S., L.Ac., Diplomate, National Board of Acupuncture Orthopedics, has treated people with HIV for eight years. He is executive director of the Immune Enhancement Project in San Francisco. AIDS TREATMENT NEWS interviewed him August 22, at the IEP office in San Francisco's Castro district. ATN: Where do you have most success with traditional Chinese medicine, and where does it not work as well? Sinclair: Traditional Chinese medicine has been particularly successful in treating peripheral neuropathy, sinusitis, pain-related problems, night sweats, insomnia, dry skin, headache, and low energy, and fatigue. With digestive problems, we do not always get a person functioning back at a normal level. But often acupuncture, together with diet changes or medication, can help to return the digestion to a more normal state. What has not worked well? The first condition that comes to mind has been Kaposi's sarcoma (KS). We have not had good success in that area. And sometimes in late-stage AIDS it is difficult to make dramatic changes, as the body's energy is so depleted. Finding a Practitioner ATN: How can somebody go about finding a Chinese medicine practitioner, not just in San Francisco but across the U.S. How do regulations differ in different states? Sinclair: Currently in the U.S. there are 27 states where acupuncture is licensed and regulated. It goes all the way from California, where we function as primary care physicians, to some states, even including Illinois, where acupuncture is illegal at this point. You need to check with the local licensing bodies. Most importantly, you want to go to somebody who is licensed, if licensing exists within your state; that is your assurance that you will get at least a minimal level of competency. In most states, there is a tendency to regulate only acupuncture, as opposed to herbal medicine. In California, our license covers both herbs and acupuncture. There are a number of ways to choose a practitioner: * Referral through friends, people who have seen a practitioner, is often the best way. You get the most personal insight about the practitioner. * Check with your physician. We have been developing a much better rapport with physicians than in the past. Often physicians will have practitioners they send people to. * Check with local HIV agencies. Often they have listings of practitioners. * Contact programs like the Quan Yin Healing Arts Center, in San Francisco, which offers an HIV certification; they have a list of practitioners across the country who have taken their HIV training. It's quite a good program -- and an assurance of a standard. * Call the state licensing agency (in California, it is the Department of Consumer Affairs), and ask them to send you a list of licensed practitioners. * Also, there is a National Commission for the Certification of Acupuncturists, NCCA. They have been accepted as the standard in a number of states that do not have their own state licensing exam. You can find out if someone has a national board certification in acupuncture, and also in herbs. For an individual state listing, send $3. to: NCCA, P.O. Box 97075, Washington, D.C., 20090-7075; or you can order the complete directory for the whole U.S. for $22, (which includes postage). You can also order by phone, 202/232-1404, 9 a.m. through 5 p.m. Monday through Friday Eastern time. Probably the most important question I would ask, if I were going to choose an acupuncturist, is how much experience they have treating HIV. Choose a practitioner who has as many years as possible. HIV is a very complex disease; the same underlying problem can look quite different in different people. Private Practitioner Vs. Clinic ATN: What is the difference between seeing a private practitioner, going to a clinic, or going to a teaching- school clinic? Sinclair: The advantage of a private practitioner is that you get more individualized treatment. A clinic will cost less, but you may be treated in a group setting. It may be a room with as many as ten to twelve tables, or just two or three tables. The quality of care is largely equal; the difference is the amount of time the practitioner can spend with you. If you go to a teaching school, you will often be seen by students; it's like going to a teaching hospital and being seen by medical students. The care certainly can be excellent; but you need to realize that you are being seen by someone in training, not a seasoned, licensed practitioner, but someone on their way there. Paying for Acupuncture ATN: In San Francisco, what might people expect to pay for Chinese medicine treatment? Sinclair: To see a private practitioner in the San Francisco area, the average cost is about $55 for an hour appointment. For a clinic, we try to offer low-cost care, by offering package programs. The most common program at our clinic is the 12-week program of herbs and acupuncture. The $240 cost covers basically all the herbs you need over a three-month period, plus an initial consultation and acupuncture session, and three more acupuncture sessions. If you need additional acupuncture, we charge $25 a session. This is about the going rate for clinics that have sliding scales. In San Francisco there are other payment options. Medi-Cal can pay for two visits a month. The Immune Enhancement Project, the Bayview-Hunter's Point Foundation, and the American College of Traditional Chinese Medicine, all have a Ryan White (Federally funded) program that provides free herbs and acupuncture to HIV-positive residents of San Francisco with income no more that $1,160 per month. ATN: Will insurance companies pay for acupuncture and herbal treatments? Sinclair: That depends on the company, and on local regulation. Call your health-insurance carrier and find out what they will cover. We have had good results with companies like ITT Hartford, and Aetna. Some Blue Cross and/or Blue Shield policies will cover acupuncture, as will some Prudential policies. You need to check about your policy, and find out if they will pay for treatment with both herbs and acupuncture. Often insurance will only pay for acupuncture treatment. ATN: In that case, can you bill for the acupuncture separately, so the patient can pay for only the other part? Sinclair? Yes. ATN: I have heard that the FDA is about to reclassify acupuncture needles. What is the practical meaning of that? Sinclair: There were five different applications submitted to the FDA for uses of acupuncture needles. Currently acupuncture needles are classified as an experimental device. So a new classification will make it much easier to get insurance reimbursement, and open a number of possibilities including applying for Medicare reimbursement. Insurance companies do not like to pay for things that are regarded as experimental procedures, and it has been a real drawback that needles were classified this way. I believe the ruling is due out sometime in September, and we are pretty certain that needles will have one classified use. That will improve the whole realm of insurance reimbursement. Acupuncture, Herbs, Electrical Stimulation, Moxibustion, Other Treatments ATN: Should patients usually take acupuncture and herbal treatments together? Sinclair: When I work with patients, I like to work with both. Often I will work on a more long-term, internal basis using herbs. They come in decoctions (prepared into a drink like a strong tea), or tinctures (herbal extracts in alcohol), or raw compressed tablets. Often they have a slower effect than acupuncture, but act better over a long time. Often I will use the acupuncture treatment for immediate symptom relief. If someone comes in with a headache, or neuropathy, or sinusitis, I will probably use acupuncture to treat those symptoms. But the underlying condition, the HIV infection, we would probably treat more with herbs. This rule has many exceptions, of course, in how I work with people. I think it's best to use both herbs and acupuncture together. But some people have certain preferences. Some have a fear of needles, or have had bad experiences, or just do not find acupuncture pleasant; there is nothing wrong with just using the herbs. And some people do not like taking herbs; particularly in HIV infection, people are taking so many pills, and one of the problems with the herbs is that you need to take a lot of product to have an effect -- simply because there is a lot of fiber. Look for a practitioner who is flexible, to work with you where you're at. ATN: Can you describe herbal decoctions? Sinclair: That is the traditional way of taking herbs in China. They put together a formula by assembling many loose herbs, as roots, barks, seeds, twigs, berries; then that mixture is cooked, and the liquid is reduced, and drunk over a period of time. ATN: Is acupuncture painful? Sinclair: That is a concern for many people. Of course you feel a prick as the needle penetrates the skin. What people sometimes describe as painful is more the acupuncture needling sensation; it's the arrival of chi (also spelled qi) at that point. That can feel like a burning, a tingling, numbness, a grabbing sensation, an electric sensation. This is an appropriate response; it's what we are looking for, it means that your body is responding to the stimulation it is receiving. Most people find acupuncture sessions very relaxing, whatever we treat. Some patients just have a great sensitivity; usually people are much more sensitive when they first start treatment. As your body becomes more balanced and more adjusted, you will find that the needling sensations are much less painful. ATN: How often does one receive acupuncture? Sinclair: What I have observed in eight years of treating persons with HIV with herbs and acupuncture is that those who do the best are those who start early, and those who are very consistent. How often you see a practitioner can depend on your lifestyle, your economic situation, your commitments. The best thing is to be very regular; it may be once a month, twice a month, twice a week -- what is important is to stay with it over a long period of time. I often tell clients I would rather they come in once a month for three years than once a week for three months. Treatment with herbs and acupuncture is a subtle process which can have dramatic changes, but you need to think about the long haul. As Westerners, as members of a pill-popping society, people want to have immediate results. Of course we try to achieve that; but you have to temper this goal with the realization that Chinese medicine is a long-term therapy. If you are going to do it, to get the best results, think of the long term. ATN: Can you explain other procedures, such as moxibustion, or electrical stimulation of acupuncture points, or qigong? Sinclair: In California our license covers the use of herbs, acupuncture, and related methods including electric stimulation, the application of cups (basically creating a kind of suction on the body), and the burning of mugwort (which is called moxibustion). Often moxibustion is used extensively with HIV. Chinese medicine looks at the influence of environmental factors, such as heat, cold, dampness, wind; often, temperature in the body is very important. In HIV we often see a deficiency, where the body's energy is very low, the tongue might have a white coat, digestion might be poor, there could be diarrhea. One of the treatments for that is the use of moxibustion, or the burning of mugwort over acupuncture points. The whole idea here is to put energy into the body, feed energy into a weak and deficient system. Practitioners use moxibustion in different ways. They may put the moxi on an acupuncture needle and burn it. They may burn a stick of moxi over the needling site. There are other methods, such as applying moxi onto a piece of aconite which is placed directly on the body. ATN: And electrical stimulation? Sinclair: Often we use that for pain relief; it's a modern development in acupuncture. We get very good results, particularly with conditions like neuropathy, through the use of electrical stimulations. Chinese and Western Medicine ATN: How do you integrate Eastern and Western care? Sinclair: In the last five years we have seen a tremendous change in physician attitudes. It used to go from indifference to outright hostility; now there is more acceptance and, in fact, encouragement of the integration of care. My philosophy on HIV is to use whatever you can get your hands on that is consistent with your belief system. That might not be acupuncture -- it might be yoga or spiritual work, or meditation, or strictly pharmaceuticals and drug trials. There is no one right way with HIV, especially given the chronic nature of the disease -- and the limitations of Western medicines. Western medicines often have an impact on opportunistic infections, but in terms of stopping the underlying process, I don't think medical science has achieved that yet. It behooves the individual to bring in many therapies, and Chinese medicine is a very useful option. It's important that you have a good working relationship with your physician; and it's even more important that your physician supports your integrating Chinese medicine, herbs and acupuncture, into your treatment program. If you are having trouble with neuropathy, for example, there is no entirely satisfactory Western medication to treat it; doctors have amitriptyline and a few other drugs. The physician could refer you to acupuncture to treat the neuropathy, which may be induced by drugs like d4T or ddI or ddC; that is a valuable synthesis right there. Or if you have digestive upset, you might have parasite cultures, an endoscopy, sigmoidoscopy -- standard Western procedures. They may not identify a pathogen; then you may choose to treat with Chinese medicine. This is another opportunity to integrate both models. The question comes up about the use of AZT, 3TC, or other antivirals. Here I come back to the philosophy that you need to use everything you can to stay healthy and stay alive. I used to feel that if one pill is good, ten pills is much better. I'm coming to see that an important principle with HIV is to use the minimum amount of treatment to achieve the maximum effect. I have seen people come into this clinic who are on Neupogen and Procrit because they have poor bone marrow reserves; they are combining ganciclovir, hydroxyurea, multiple nucleosides, and they wonder why they have problems with bone marrow. Other Aspects ATN: What is "Qigong" -- and how does it relate to "Tai Chi," a term more familiar to our readers? Sinclair: Both are variations of each other. Each is a systematic series of movements that serve to enhance the body's energy. Qigong tends to be slower; it is less of a martial art. Tai Chi can be a defensive martial art, even though it also is gentle and soothing. Each gives one a profound sense of relaxation. What I hear constantly from our clients who do Qigong or Tai Chi is that they have increased energy. It does not take a lot of technology or training to learn the basic form; then it's up to you to practice. ATN: You mentioned that the practitioner can act as client advocate, can help the client be informed about lifestyle, diet, stress, and alternative/complementary treatments. Can you give some examples? Sinclair: I look at the relationship between the practitioner of Chinese medicine and the client as a prevention strategy. Particularly with a well-trained practitioner, they can recognize early danger signs. For example, in this clinic, we have seen patients come in with a splitting headache, they are sensitive to light, they have a stiff neck -- these are signs of meningitis. A number of times we have referred people immediately to the emergency room. Sometimes we will treat, and then have the patient call their physician, or go into the emergency room to be treated. Patients usually see their acupuncturist much more frequently than they see their Western physician. It is important that you pick a practitioner who is experienced, so he or she can be a sentinel for early danger signs, and knows when to refer you to a Western provider. The relationship that develops is often intimate, informal. It's a good opportunity for the practitioner to talk to you about lifestyle decisions you are making, stress, coffee, activity, exercise, drug use. Acupuncture has an aspect of disease prevention; certainly we see that in the reduction of colds and flu. If we accept the theory that you want to prevent the immune system from being stimulated (to avoid stimulating the growth of HIV), Chinese medicine may have a beneficial effect. HIV can be very overwhelming; it is difficult for people to make a lot of choices. A well-informed practitioner can talk to you about clinical trials, about Western medications, about other alternative therapies, about nutrients and supplements. Certainly at our clinic, everyone is very well trained in these areas. ATN: You mentioned coffee. Do you think it is best avoided? Sinclair: My philosophy is that we need to be realistic. Yes, it's probably good to stop coffee, stop staying up late, don't smoke, don't do drugs, avoid stress, get appropriate exercise. But that's not always realistic for the ways people exist in the real world. I much prefer to see people do gradual changes over time, changes they are going to stick with. If someone is drinking ten cups of coffee a day, there is a reason why they are drinking so much, and they need to look at that. But I think one or two cups is fine -- although there are practitioners who will disagree with me. I like to take a realistic approach; I never want to lecture to my patients. Generally people know what they should do. It is not from lack of information (that they don't do it); it is a number of other factors that influence people's decisions. Research in Traditional Chinese Medicine ATN: What research are you doing at the Immune Enhancement Project? Sinclair: We received funding through the National Institutes of Health Office of Alternative Medicine to do a study comparing the use of antibiotics to herbs and acupuncture for treating HIV-related sinusitis. It's an eight-week trial with a four-week washout. We tried to design it to be as objective as possible, so we are looking at objective measures such as nasal resistance, nasal air flow, smell testing; and we are doing paranasal CT scans to show whether the therapy is having an impact. This study is randomized, with 20 people in each arm of the study. ATN: Is the study full, or are you still recruiting? Sinclair: We are still actively seeking patients. Recruitment is going much slower than we originally anticipated. Part of the problem is that by the time people have tried all the antibiotics, they are ready to do acupuncture; but what this study offers them is a randomized choice. ATN: Is there a cost to participate in the study? Sinclair: There is no cost. And whichever group you are in, you get a lot from it. You will have a complete ENT exam by the physician, Kelvin Lee, M.D. Also you will get pre- and post-treatment paranasal CT scans, as well as either eight weeks of herbs and acupuncture, or eight weeks of antibiotic therapy. For more information about volunteering for this trial, see AIDS TREATMENT NEWS # 225, June 16, 1995, or call Tom Sinclair at the Immune Enhancement Project, 415/252-8711. There is a growing interest in research on traditional Chinese medicine within the U.S. We have a long way to go; but we have come a long way already, in being able to document and show the benefit of these therapies. Immune Enhancement Project History ATN: How did the Immune Enhancement Project begin? Sinclair: The original concept of the Immune Enhancement Project was developed in 1983. IEP was organized at our present location in 1990, and incorporated as a non-profit in July 1992. Our function is to provide low-cost care, to educate the public about the benefits of traditional Chinese medicine, and to conduct research. That is our mission, and that's what we do. ATN: What are some of the other major centers in San Francisco? Sinclair: We are very fortunate in San Francisco that there are many options. In teaching clinics, there is the American College of Traditional Chinese Medicine; it has been a leader in the field of HIV treatment. There is also the Meiji School; I don't know if they have an HIV program. In terms of the clinics, there is the Immune Enhancement Project, and also the Quan Yin Healing Arts Center. Misha Cohen (the founder of Quan Yin, now in private practice) should also be acknowledged. We all owe her much credit. Over the years she has been a pioneer in treating HIV, in providing education about how to treat HIV, and in providing access to low-cost care. Also, in terms of detox, there are treatment programs available at the Haight Ashbury Free Clinic, and Walden House. Also the Bayview-Hunter's Point Foundation has Ryan White funding. For More Information ATN: What newsletters or other information about Chinese medicine can you suggest? Sinclair: The Immune Enhancement Project publishes a quarterly newsletter. We try to appeal to general clients; also, we try to have articles which will be useful to practitioners working with people who are HIV-positive. [A sample issue of the newsletter is free; a year's subscription (4 issues) costs $12. Send a request for a free issue, or a check or money order for a subscription, to IEP, Newsletter Subscription, 3450 16th St., San Francisco, CA 94114. Or call the Immune Enhancement Project at 415/252-8711.] There is a growing field of journals of alternative medicine. Some have come out in the last year, and have a number of well-written articles. * * * Tom Sinclair suggested the following books and journals on traditional Chinese medicine. They can be ordered through bookstores, or directly from the publisher. AIDS service organizations which maintain a library could use these to begin a section on Chinese medicine. Books * CHINESE MEDICINE AND HIV, short booklet by Gene London, 1995. $1, Impact AIDS, San Francisco, phone 415/861-3397; also available from the Immune Enhancement Project, where the author is a practitioner. * BETWEEN HEAVEN AND EARTH: A GUIDE TO CHINESE MEDICINE, by Harriet Beinfield and Efrem Korngold, 1993. $14, Ballantine Books, New York. * TREATING AIDS WITH CHINESE MEDICINE, by Mary Kay Ryan and Arthur Shattuck, 1994. $29.95, Pacific View Press, Berkeley, California, 510/849-4213. * THE WEB THAT HAS NO WEAVER; UNDERSTANDING CHINESE MEDICINE, by Ted J. Kaptchuk, 1983. $19.95, Congdon and Weed, New York. * AIDS AND ITS TREATMENT BY TRADITIONAL CHINESE MEDICINE, by Huang Bing Shan, 1991. $24.95, Blue Poppy Press, Boulder, Colorado, 303/447-8372 (or place orders at 800/487-9296), 9 a.m. to 2 p.m. Mountain time Monday through Friday. * NINE OUNCES: A NINE-PART PROGRAM FOR THE PREVENTION OF AIDS IN HIV-POSITIVE PERSONS, by Bob Flaws, 1992. $9.95, Blue Poppy Press, Boulder, Colorado (see phone information above). * AIDS AND CHINESE MEDICINE, by Qingcai Zhang, M.D., 1993. $19.95, Oriental Healing Arts Center, Long Beach, California, 310/431-3544. Journals * ALTERNATIVE THERAPIES IN HEALTH AND MEDICINE. Bimonthly, $48 per year. Aliso Viejo, California; phone 800/899-1712. * ALTERNATIVE/COMPLEMENTARY THERAPIES. Bimonthly, $79 per year plus shipping. Mary Ann Liebert Publications; phone 914/834-3100, ask for customer service. * THE AMERICAN JOURNAL OF ACUPUNCTURE. Quarterly, $60 per year. Capitola, California; phone 408/475-1700. ***** Hydroxyurea and ddI: French Study Published by John S. James The long-awaited French study of hydroxyurea plus ddI appeared August 28 in the JOURNAL OF ACQUIRED IMMUNE DEFICIENCY SYNDROMES AND HUMAN RETROVIROLOGY. It reported good antiviral activity and CD4 count improvement in a 90-day trial with 12 patients who started with a high CD4 count. Viral load (measured by plasma HIV RNA) fell with a median decline of 1.71 log (about 98%) in six of the 12 patients; in the other six, plasma HIV RNA fell to undetectable levels, so the exact decline could not be computed. At the same time, the 12 patients had a median CD4 increase of 120. The 12 patients had to be asymptomatic, with CD4 count over 250, to enter this trial. Their median starting CD4 count was 343. There were some side effects which might have been due to hydroxyurea, but none severe enough to cause anyone to discontinue the treatment. However, other publications have reported that the drug can cause serious side effects. Comment We have heard a few greatly mixed reports on hydroxyurea, which has been used for decades in cancer treatment and is available by prescription. Generally the good reports have been from persons in earlier stages of HIV disease; many have had CD4 counts in the high 200s or more. One person who started with a CD4 count just under 300 reported tremendous improvement. But we have also heard two reports from people with advanced AIDS and very low counts who found no benefit at all and serious side effects; one thought the drug had caused him lasting harm. Hydroxyurea may work better in earlier than in later illness, although there is not enough information yet to know for sure. Also, it is unclear what dose should be used. The French study used "200 mg ddI twice daily on an empty stomach, and 500 mg hydroxyurea twice daily taken at least one hour after the ddI." The 500 mg twice daily dose seems to be fairly common in the community, although some people suspect that lower doses should be used. This new report of a small trial may give needed momentum to additional research with this drug, which should have been studied in HIV treatment long before now. But it seems clear that hydroxyurea is not a drug for everyone, and does have safety concerns that must be addressed. ***** Thalidomide: New Expanded Access for Wasting by John S. James Thalidomide has already been available through a compassionate-use program for treatment of certain cases of aphthous ulcers, and some other conditions. But until now patients could not obtain the drug through this program for the treatment of HIV-related wasting syndrome, where thalidomide might also be effective. Now the FDA has authorized an expanded-access program for AIDS-related wasting. This program, conducted by Celgene Corporation of Warren, New Jersey, will randomize patients to one of two doses, 50 mg or 200 mg (the most common community dose so far has been 100 mg); this randomization will allow researchers to determine if there is a dose response in either safety and/or effectiveness of the treatment. Response to therapy will be measured after four weeks, and those failing the smaller dose can switch to the larger dose at that time. Patients may continue the therapy indefinitely. This program will require that physicians get local IRB (institutional review board) approval to participate -- which can be a serious obstacle to patients who obtain their treatment in public hospitals and clinics. Also there will be cost recovery, meaning that the company, which is small, can charge for the cost of the program. The cost has not yet been set, but we have heard that it is likely to be about $1,000 per year -- not a few thousand dollars per year as quoted in The WALL STREET JOURNAL on August 29. Entry Criteria As we go to press on August 30, the protocol is not yet entirely final. But according to Dr. Sol Barer of Celgene, the major criteria are likely to be the following: * Those who are qualified for the separate double-blind controlled trial of thalidomide which is still recruiting cannot enter this program, unless they live more than an hour away from any trial site (by public transportation). Those who have entered and completed that trial may enter this program. * Those ineligible for the controlled trial because of opportunistic infections, malignancies, IV feeding, diarrhea or use of other anti-wasting agents -- which includes many people -- may enter the expanded-access program. In addition, those who have lost more than 20 percent of body weight can enter immediately. * Exclusion criteria are pregnancy, serious peripheral neuropathy, major abnormalities in blood chemistry, or if the physician feels the treatment is not appropriate. * Women of childbearing age can enroll, but must use specified birth-control methods to prevent any chance of pregnancy. For more information about this program, call 800/896-6766, or after Monday September 4 call 800/253-1596, during business hours Eastern time. ***** d4T Dose Clarification by John S. James Our interview with Dr. Conant published in issue #228, August 4, 1995, left some readers confused about the d4T dose Dr. Conant is using. For some patients, he increases the dose until it is twice the dose recommended by the FDA in the product labeling. The following statement in the interview is correct: "Dr. Conant: If there is evidence of disease progression, we are first treating many patients with very high dose d4T. The dose I usually start with is 20 mg. twice a day; then I have the patient increase it by 20 mg. each week, until they get neuropathy, or until we get to 80 mg. twice a day. That is twice the FDA-recommended dose." But then the next paragraph includes the statement, "So if patients can tolerate the dose, I go all the way up to 80 mg per day." This should have read "80 mg per dose," not "per day." AIDS TREATMENT NEWS regrets the confusion. ***** San Francisco: Viral Load Trial Offers Free Tests Chiron Corporation is sponsoring a small trial to observe how viral load, measured by their branched DNA (bDNA) test, responds to various treatment changes. Participants must plan to make a change in their HIV treatment (either starting or stopping either a mainstream or alternative treatment) -- but get the first viral load test through the program before they do so. Several other tests will be run after the treatment change. Blood will be drawn at Davies Medical Center in San Francisco. This program is intended for persons who otherwise have no way to pay for viral load tests. To register, call Healing Alternatives, 415/626-4053, noon to 6 p.m. Pacific time Tuesday through Friday, or noon to 5 p.m. Saturday. ***** National AIDS Treatment Advocates Forum, October 15-18, Los Angeles NMAC, the National Minority AIDS Council, is sponsoring a National AIDS Treatment Advocates Forum, October 15-18 at the Century Plaza Hotel & Tower, Los Angeles. (Note that this meeting is just before the 1995 National Skills Building Conference, October 19-22, in the same Los Angeles hotel.) Topics tentatively scheduled include antiviral drugs, immune- based therapies, treatments for opportunistic infections, malignancies, women's health, basic science workshops, research policy and legislation, and treatment education. This forum is to "foster dialog and exchange of information and ideas, and facilitate the development of leadership that can advocate for better treatments and educate people with AIDS and their caregivers on the latest treatment advances." Co-sponsors are the AIDS Action Council, AIDS Project Los Angeles, American Foundation for AIDS Research, Gay Men's Health Crisis, National Association of People with AIDS, National Minority AIDS Council, Project Inform, and the Treatment Action Group. Conference registration is $100 if received by September 29, $150 later. Single or double occupancy rooms at the Century Plaza Hotel & Tower are $89 per night for this meeting, if reserved by September 29. For more information, contact David Barre at National Minority AIDS Council, 202/483-6622, fax 202/483-1135, or email NMAC1@aol.com. National Skills Building Conference, October 19-22, Los Angeles The fifth National Skills Building Conference will take place October 19-22 at the Century Plaza Hotel & Tower in Los Angeles. Registration is $330 for members (persons from a community-based organization which is a dues-paying member of one of the three host organizations -- AIDS National Interfaith Network, National Association of People with AIDS, and National Minority AIDS Council), $450 nonmembers, until September 29; later or on-site registration is $550. Single or double occupancy rooms at the Century Plaza Hotel & Tower are $89 per night for this meeting, if reserved by September 29. (Note: As we go to press, the Century Plaza Hotel sold out for October 18th and 19th; for information on overflow hotels, call Craig Wilkinson, 202/483-1124 ext. 312.) Last year's meeting, with over 1800 participants, was named 1994's Best Community Service Education Program by the American Society of Association Executives. For more information, call the National Skills Building Conference, 202/483-1124. Surrogate Markers Meeting, October 16-18, McLean, Virginia Surrogate Markers & Clinical Outcomes of HIV: Strategies for Selection and Use, a conference on the use of "surrogate markers" such as viral load and CD4 counts in clinical trials and perhaps in patient management, will be held October 16- 18, at the Ritz Carlton Tysons Corner hotel, in McLean, Virginia. This meeting is organized by Cambridge Healthtech Institute, which organized a similar meeting in October 1994. Prices range from $395 to $895, plus hotel ($135 single or double per night, if reserved before September 25). "An analysis of currently available information surrounding the selection, validation, and efficacy of HIV surrogate markers and clinical outcomes will be the focus of Day One's presentations. In this newly formatted open three-day forum, the panel, consisting of the Executive Scientific Advisory Committee members, will review the data and analyses presented by prominent AIDS researchers and participate in several open workshops focusing on novel investigations in clinical research." For more information, contact Cambridge Healthtech Institute, 617/630-1300. Comment This writer attended last years' meeting, and plans to go again this year. We were disappointed in the outcome last year, however, when a pre-appointed committee met privately and wrote the recommendations of the meeting -- recommendations which later were widely ignored. This year it appears that there will again be a pre-appointed committee, only it will meet openly. We were concerned that the recommendations were and may again be too conservative, as committee products by their nature are likely to be. We believe that the best way to save lives is to move rapidly to use viral load and other tests of HIV disease status as well as we can, for clinical management of individual patients as well as for clinical trials to test new drugs. But academic committees want to see data first. People do not agree on what data should be required, however; and some want data that will take a very long time to obtain. The result is gridlock, with no company applying to the FDA for approval of its viral load test, because no one has decided what standards the tests must meet. We believe that the key needs now are: (1) better information on how best to use viral load clinically -- information which we believe will develop much faster from clinical experience in addition to trials, than from clinical trials alone; (2) consensus on what standards must be met before viral load is officially recommended for routine clinical use -- since official approval would help greatly in lowering the price of the test (by allowing routine use of test kits at reference labs), and also in getting the cost of the test reimbursed for patients; and (3) attention to developing immune-function measures which are feasible for widespread clinical use -- especially immune function tests based on flow cytometry, such as the new FastImmune* (CD69) system from Beckton Dickinson. If this year's meeting can help with these issues, it will make an important contribution. In the future, more of this kind of work will be shifted to computer conferences, where everyone can participate, at little cost and on their own schedules. Face to face meetings will always be necessary, but they will be better focused when they do not have to cram everything into three pressure- packed, expensive days. ***** Next AIDS TREATMENT NEWS Delayed One Week The next issue of AIDS TREATMENT NEWS will be delayed one week so we can cover the important ICAAC conference (Inter- Science Conference on Antimicrobial Agents and Chemotherapy) in San Francisco. We will publish issue #231 on September 22 instead of September 15. Issue #232 will appear on schedule on October 6. ***** Health Insurance: Widespread Copayment Abuse by John S. James A newly exposed health-insurance abuse, run by some of the biggest companies in the business, is costing policyholders billions of dollars a year, according to expert estimates. Anyone who pays a copayment (usually 20%) for health care is potentially at risk. The scheme was described in a page 1 article in The WALL STREET JOURNAL, August 21. The way it works is that the companies sell standard insurance contracts in which they agree to pay 80 percent of certain medical costs. But then they negotiate secret deals with doctors and hospitals, by which they receive huge discounts over the nominal price -- often more than 50 percent. This way the insurance company ends up paying much less than the 80 percent agreed to in its contract. In some cases discounts can be more than 80 percent. This means that not only did the insurance company pay nothing, it actually got a rebate from the physician, out of the patient's copayment. The insurance companies then use the fictitious 80-percent amounts to tell people that they have reached their policy maximum, when the company has actually paid far less than the amount agreed in the contract. Meanwhile, all this is concealed from the patients by contracts with the doctors and hospitals, requiring them to keep the information confidential. The WALL STREET JOURNAL article described the case of one company, Trigon Blue Cross Blue Shield, in Virginia. The state forced it to abandon such practices and pay millions of dollars in civil fines and restitution. (Technically a not- for-profit, Trigon has accumulated a surplus of more than $650 million, and pays its chief executive an annual compensation of $895,000.) Meanwhile, similar practices continue in other companies across the country. Activists could help by getting documentation from friendly physicians and hospitals, or their employees, to the attention of regulatory agencies and the press. Doctors and hospitals know if they are billing your insurance for more than they are really being paid. Another approach might be to urge medical societies to develop ethical codes governing such practices, which could not exist without collaboration by healthcare providers. Note: A different approach to reforming healthcare abuses was suggested in an interview with Lonnie Bristow, the new president of the American Medical Association, published in the SAN FRANCISCO CHRONICLE, August 20. He said that after the loss of health-care reform, managed care, which can be legitimate, had often become "managed profiteering." The interview lacked details, but Dr. Bristow protested that Federal antitrust laws discourage doctors from competing with healthcare corporations by providing their services directly to employers, etc., at lower cost, while maintaining the integrity of the doctor-patient relationship. It may be illegal for doctors to collectively price their services, while legal for a corporation to hire the same doctors and set the same prices. (Doctors can start their own healthcare corporation -- and are doing so in California -- but this can be difficult.) Federal law may have unwittingly created special privileges for corporate healthcare, helping it take billions of dollars out of the healthcare system without providing comparable value in return. ***** AIDS TREATMENT NEWS Published twice monthly Subscription and Editorial Office: P.O. Box 411256 San Francisco, CA 94141 800/TREAT-1-2 toll-free U.S. and Canada 415/255-0588 regular office number fax: 415/255-4659 Internet: aidsnews@aidsnews.org Editor and Publisher: John S. James Reader Services and Business: Richard Copeland Thom Fontaine Denny Smith Tadd Tobias Statement of Purpose: AIDS TREATMENT NEWS reports on experimental and standard treatments, especially those available now. We interview physicians, scientists, other health professionals, and persons with AIDS or HIV; we also collect information from meetings and conferences, medical journals, and computer databases. Long-term survivors have usually tried many different treatments, and found combinations which work for them. AIDS Treatment News does not recommend particular therapies, but seeks to increase the options available. Subscription Information: Call 800/TREAT-1-2 Businesses, Institutions, Professionals: $230/year. Nonprofit organizations: $115/year. Individuals: $100/year, or $60 for six months. Special discount for persons with financial difficulties: $45/year, or $24 for six months. If you cannot afford a subscription, please write or call. Outside North, Central, or South America, add air mail postage: $20/year, $10 for six months. Back issues available. Fax subscriptions, bulk rates, and multiple subscriptions are available; contact our office for details. Please send U.S. funds: personal check or bank draft, international postal money order, or travelers checks. VISA, Mastercard, and purchase orders also accepted. ISSN # 1052-4207 Copyright 1995 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.