Subject: Stockholm Conference Date: Jul 1 1988 (506 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& copyright 1988 by John S. James; permission granted for non-commercial use. Articles by John S. James from AIDS Treatment News unless otherwise indicated. John may be contacted by telephone at (415) XXX-XXXX. AIDS TREATMENT NEWS issue #59, July 1, 1988. CONTENTS: [***** appears here at each new item] Stockholm AIDS Conference: The Untold Story Treatments At Stockholm Notes and Announcements ***** Stockholm AIDS Conference: The Untold Story by John S. James The "IV International Conference on AIDS", June 12-16 in Stockholm, Sweden, included over three thousand scientific presentations -- more than twice as many as last years' meeting in Washington, D. C. We covered these conferences to gather information on promising treatment possibilities and related scientific research. This article gives our overview; details will follow in the next several installments, starting below and continuing every other issue. What's Right? Despite largely pessimistic press reports, we found more good news than bad from the Stockholm conference: * Tremendous nuts-and-bolts progress in basic research represents major advance toward an eventual cure or highly effec- tive treatment -- for AIDS and many other diseases as well. Lit- tle of this progress makes headlines, however. * The conference reflected a new stage of effective world- wide mobilization in many areas of AIDS. (Unfortunately there are also glaring deficiencies, illustrated below.) * In civil liberties and related areas (outside our treat- ment focus) the world's experts have developed strong consensus which recognizes the concerns and dignity of persons with AIDS. For example, balancing the rights of infected persons against those of the uninfected is seen as a false issue; on the con- trary, antidiscrimination protection is regarded as absolutely crucial to effective control of the spread of the virus. Far from being opposed, the interests of those with AIDS and the larger society correspond. The developing consensus easily crosses national borders. For example, telephone hotlines throughout the world are now pro- viding roughly the same information. This writer is too busy covering treatments to give non- discrimination and related issues the attention they deserve. Those working in these areas should examine the Stockholm results and other forums for ammunition against the political demagoguery still very much with us. Behind the Bad News: Analysis and Comment The bad news is the lack of major treatment advances in the last year. Most commentators have assumed that lack of progress on treatments reflects the difficulty of the disease. But analysis of the Stockholm presentations contradicts this assumption. The evidence suggests another cause for lack of treatments. If the intractability of the disease were responsible, we would have expected to see a string of treatment failures at Stockholm -- many reports of drugs or other therapies which were tried but failed to work. In fact there were very few such reports. Very few new treatments failed in the last year. Very few were tried at all. The problem is political, not technical. The impressive worldwide mobilization around basic research, prevention, and other areas has glaringly omitted any serious mobilization or commitment to save the lives of those now infected or ill. These people were written off several years ago, and since then there has been no institutional constituency for mobilizing research to save lives. The major thrust of the scientists at Stockholm has been to find a cure through elegant molecular biology, maybe in five to ten years. There is no urgency or mobilization to test the dozens if not hundreds of treatment possibilities widely agreed to be available now -- dozens of which could be tested within the next few months if only there were the will. Some of the scientists now realize that there is a problem, in that current policies all but guarantee that hundreds of thousands of people will die of AIDS during the next few years. Some have reached the "isn't it a pity" stage. But few have bro- ken through the aura of inevitability to see the problem as resulting from human attitudes and decisions which can and should be changed. The one common factor behind virtually every treatment attempt receiving serious research attention -- AZT, vaccines, interferons, CD4, Ampligen, IMREG-1, and a few others -- is hot prospects for commercial gain. No major institution, government as well as private, will seriously consider a treatment solely on its medical and scientific (as opposed to commercial) merit. If it's a plant that anyone could pick, a food in general use, a common industrial chemical, or a health-food product, it won't be considered, no matter what the evidence. Scientists as well as corporations have vested interests. It has unfortunately always been hard to find financial support for basic biological and medical research -- work which doesn't make headlines, but on which future progress depends. AIDS is now driving huge advances in fundamental knowledge of viruses and the immune system, as well as related technology such as improved scientific tests. The research community involved in this effort has never had it so good. No one is deliberately conspiring to keep AIDS going to feed the multi-billion dollar research and pharmaceutical industries. No one has needed to. For the interests of the powerful are only threatened by doing what needs to be done -- creating a mechanism to promptly test the dozens of promising treatments already known and available, regardless of commercial prospects -- each with perhaps ten to 20 volunteers. The problem isn't money -- this testing wouldn't need to cost much -- but pervasive obstruction- ism throughout the institutions involved. This problem may seem so big as to be hopeless. But there is a key place to start, where attainable public effort can have critical results: namely the lobbying of AIDS, gay, hemophilia, and physicians' organizations to investigate and address the issues of clinical trials and treatment access for saving the lives of the millions of people already infected with the AIDS virus. The decision to write off those already ill probably started from homophobia. But now it continues from its own momentum, due to the almost total lack of institutional support to change it. We saw this lack in Stockholm, when scientists didn't even feel the need to address the issue of the "drugjam" in clinical tri- als. Like the first candle in a dark room, the first advocacy makes all the difference when there has been none before. ***** Treatments at Stockholm Dozens of treatment possibilities appeared somewhere among the three thousand presentations at Stockholm. Most were largely ignored, however, with their poster sessions usually empty; the scientists just walked by. Usually no evidence suggested that these treatment prospects were any worse than the ones getting the attention. They lacked political and commercial currency, not necessarily scientific merit. Nobody could cover all three thousand presentations in the few days of the conference; scientists naturally focused on what was hot in their fields. In our own coverage, however, we decided to emphasize those treatments most likely to be over- looked. Therefore we de-emphasized those which will get atten- tion, namely AZT, interferons, vaccines, and the very important area of improved medical management. We will cover these sub- jects mainly by interviewing physicians who were at the confer- ence; we spent our own time gathering as much information as pos- sible about other treatment leads. We may have been the only journalist at the conference whose primary business was to seek out precisely those treatments most likely to be overlooked. Treatments possibilities not at the conference which we would like to have seen there included BHT, DHEA, DNCB, garlic, and MM1. Apparently nobody submitted papers on these. Treatments or leads presented in Stockholm which we plan to cover include (in alphabetical order) acyclovir, aerosolized pen- tamidine, AL 721, ampligen, antabuse, antisense DNA, apurinic acid, AS 101, avarone, carrisyn, castanospermine, CD4, corticos- teroids, dapsone, DDC, dextran sulfate, fluconazole, foscarnet, fusidic acid, ganciclovir (DHPG), germanium, ginseng, glycans, glycopeptides, glycyrrhizin, GM-CSF, gonadotropins, heparin, HPA-23, Immunotoxins, interferons, IMREG-1, imuthiol, isoprino- sine, itraconazole, ozone, peptide T, pine cone extract, PMEA, prostaglandin inhibitors, ribavirin, rifabutin, selenium, soma- tostatin, THF, thymostimulin, trimetrexate, tumor necrosis fac- tor, and zinc. We will also look at new research directions and improved methods, such as new scientific tests. ***** Covering treatment news at the "IV International Conference On AIDS" presents unusual difficulties -- problems which help explain why treatment developments received less press coverage than they deserved. Reporters faced a huge mass of information with no organiz- ing principle, and no help in deciding what was important other than following the "conventional wisdom" of what was in style among physicians and scientists. No single treatment or small group of them compelled special interest based on actual data presented at Stockholm -- although chances are good that a number of treatments discussed may prove very important in the future. But for now, even from the mass of reports taken together, no pattern emerged. Mainstream reporters complained that you could take any angle you wanted at this conference, and support it. As one com- mented, you could shoot anywhere and hit something. This exces- sive freedom makes the reporter's job more difficult, because no guidance emergences from the material itself. Reporters do not want their basic relationship to the story to be arbitrary. In this situation we owe the reader some explanation of our own biases and approach, as we begin a series of several articles on dozens of specific treatment possibilities about which infor- mation was presented in Stockholm. First, we have not considered treatments unless we saw some thread of possible usefulness in the foreseeable future. But many of the potential treatments we report are not ready for people to use now, and some will never be. We considered selecting what to report from the point of view of what information is most useful now, but decided against this approach for several reasons. First, hundreds of practicing physicians attended the conference, and they are in the best position to know what is immediately important. We can interview them about this information, and plan to do so. Second, no one can know at this time which treatment leads presented at Stockholm will turn out to be important. The more suggestive, unproven developments are the ones most likely to be overlooked by the conference attenders; often in the history of science and medicine valuable information is lost for years in this way. We want to make this information available to those who did not happen to attend the conference and read a particular poster. The remaining question is how to make coherent to our readers a massive body of facts which fits no particular pattern, no particular categories. We expect to organize each article as a guided tour, using particular treatments to illustrate concepts or viewpoints which may help in understanding the overall picture of AIDS research. We cannot organize the articles in advance, however, as it will take us several weeks to go through the material, as we are writing about it; and in any case we have not found useful ways to categorize the treatments. Each article will consist of what emerges at that time from material not covered so far. HOE/BAY 964 (Poster #3656) We never heard of this substance before, and conference attenders could easily have missed it, as no mention appeared in the published book of abstracts (abstracts submitted months in advance, therefore lacking the most current information). Instead, HOE/BAY 964 appeared only at the conference itself, at the end of a poster ostensibly about something else. The poster, titled "Development Of HIV-Variants With Higher Resistance Against AZT Under Treatment With AZT", was presented by seven German scientists from two research institutions in West Germany, and one from the Karolinska Institute in Sweden. What caught our attention was the statement that this substance is already in clinical study in Germany; therefore we thought we should know about it. The poster primarily reports on a study of what may be a reason that the effectiveness of AZT often falls off after long- term use -- development of drug resistance by HIV. Other reports have suggested that evolution of HIV within each patient may be an important part of the natural history of disease. HIV evolves far faster than other viruses or organisms, and the development of drug resistance may occur independently within each person. It is certainly conceivable that due to prevention methods such as safer sex -- which patients will prob- ably have adapted well before their diagnosis and treatment with AZT -- the resistant virus would be unlikely to spread to others, and therefore the cumulative development of resistant strains may not be a problem. (This possibility reinforces the advice that persons who are HIV positive or who have AIDS must avoid unsafe sex with each other.) The poster (#3656) included a summary, the first two para- graphs of which were identical to the published abstract (except for updating the number of persons known to have developed AIDS from 64,000 when the poster was submitted to 84,000 when the conference took place). The researchers followed 60 AIDS patients receiving AZT for periods up to one year, and during this time AZT did not reduce the ability to culture virus from the patients' blood. Three of the 60 patients were studied more intensively by testing the susceptibility of their virus to AZT in the labora- tory. The researchers found that the virus from these patients was significantly less sensitive to AZT late during the course of the treatment, meaning that drug resistance had developed. Then the summary included the following apparently new results, introducing HOE/BAY 946 almost as an afterthought: "In contrast, HOE/BAY 964 (chemically a xylan(hydrogensulfate) disodium salt), an inhibitor of HIV currently under clinical investigation in Germany, did not show significant differences in the inhibition of the RT from sequen- tial virus isolates from these patients." The poster also included a diagram with the chemical structure of HOE/BAY 964, and clinical results from the three patients whose virus was stu- died. We could not be sure from the poster that HOE/BAY 964 had been tested in humans. But as this issue went to press, we heard from a physician who talked to the researchers who presented the poster (#3656). They told him that they are using HOE/BAY 964 with patients, especially those who need to discontinue use of AZT. (Therefore it seems especially important to investigate this this new antiviral now, as many people have been using AZT for about a year, and may need to find another treatment soon if the AZT becomes less effective due to development of drug resistance by HIV.) AmFAR (the American Foundation For AIDS Research) is follow- ing up on HOE/BAY 964 for possible inclusion in the new issue of its treatment directory. AmFAR is in an excellent position to collect this kind of information, since it is a well-known, respected organization, and it gives several million dollars a year in research grants. We will continue to report on this treatment possibility as more information becomes available. Note On Treatments: More readers have asked us questions about dextran sulfate and AL 721 than about any other experimental treatments. We will cover these later when we have time to assemble the information. Briefly, both dextran sulfate and AL 721 had some new information presented at Stockholm, but nothing spectacular. Perhaps the biggest news was the great interest in dextran sulfate among phy- sicians and scientists at the conference. Only a little new human data was available, however. ***** Notes and Announcements Stockholm conference abstracts available (1) In San Francisco: A copy of the abstracts of all three thousand presentations at the Stockholm conference is kept at the library of The Healing Alternatives Foundation (formerly the Healing Alternatives Buyers' Club), 273 Church Street, in San Francisco, open Tuesday through Saturday 1-5 PM, 626-2316. There is a keyword subject index and an author index, so you can find the abstracts on the above treatments, or on other subjects. Individual abstracts can be photocopied at the library for five cents each. If you want the complete set, we have arranged for a photo- copy shop to keep a master set on hand so that anybody can order a copy. The complete abstracts, enlarged for legibility and now a stack of paper seven inches thick, can be obtained for the pho- tocopying charges, about $55., from Copy Mat, 2370 Market Street (near Castro), 864-2679. Ask for the "Stockholm Conference Abstracts". (2) From elsewhere: Persons out of town who cannot pick up a copy personally can obtain one through Project Inform, (800) 334-7422 in California, (800) 822-7422 elsewhere in the U. S., or (415) 558-9051 from anywhere. The total cost of photocopying, shipping, and handling will be under $100. Long-Term Survivor Study. The AIDS Healing Alliance (a San Francisco organization not to be confused with The Healing Alter- natives Foundation) is conducting a long-term survivor study. It needs participants for its pilot study within the next week. It is seeking persons who have had * An AIDS diagnosis for at least two years, or * An ARC diagnosis for at least seven years, or * A seropositive status for at least seven years. Participants will fill out a medical and lifestyle survey questionnaire. For more information or to request a questionnaire, call Tom Greaney, (415) 863-7725 (message phone). Major New York Fundraiser July 10. A little-known group which organized a very successful fundraiser last year hopes to do even better this July 10. This effort can also be a model for fundraising elsewhere. People Taking Action Against AIDS (PTAAA) last year raised more than $120,000 at a single even, with less than $5000 in expenses. The key was an auction of donated work by well-known artists, some world famous, at an event at a home in Bellport, Long Island. PTAAA gave $50,000 to the Community Research Ini- tiative to fund a lipid study, and the remainder to a local AIDS service organization, LIAAC, the Long Island Association for AIDS Care. This year PTAAA will not only help the same beneficiaries, it will also reserve money for small seed grants to help other communities organize their own events. It is particularly interested in supporting organizing outside of major metropolitan centers, in areas where there is currently not much AIDS activity or information access. For information about the July 10 event, or the community grants, or how similar events might be organized in San Francisco or elsewhere, call Don Hall, PTAAA, (516) 286-2374, or write PTAAA, P. O. Box 378, Belport, NY 11713. California: Help Needed Against Dannemeyer Initiative. An "AIDS Initiative" which would close California's anonymous test- ing sites and force physicians to report anyone they know or "suspect" to be antibody positive will be on the November ballot in California. It would also allow insurance companies to use the HIV antibody test to deny coverage, and require anyone who has tested antibody positive to report themselves to authorities within seven days. While the voters just rejected the similar LaRouche Initia- tive by a large margin, the Dannemeyer "AIDS Initiative" is much stronger politically. It has important Republican Party support and is not associated with La Rouche. Also, it may have insurance industry support because it would repeal the current law against using the HIV antibody test for insurance. This initiative threatens the movement to get people to be tested earlier and treated earlier. It gives everybody strong reasons to delay getting tested as long as possible, delaying medical intervention and AIDS-prevention counseling. It is likely to exacerbate the AIDS disaster. To support the effort against the Dannemeyer Initiative, contact Mobilization Against AIDS, (415) 863-4676. New help is urgently needed because the people who usually fight these ini- tiatives are overextended with AIDS work already. Comment On HIV Testing and Insurance: Legislation which passed the California Assembly this week would let insurance com- panies use the HIV antibody test to deny health insurance to per- sons with HIV (a provision also included in the Dannemeyer "AIDS Initiative", above). This issue illustrates a long-term problem for the whole U. S. health-care system, not just AIDS. For the HIV antibody test is only the first of an expected wave of high- tech tests to detect persons at higher risk for cancer, heart diseases, arthritis, and other expensive illnesses, as well as AIDS. In the past the whole point of insurance has been to share the risk. But in the future the industry will inexorably drive to use the new tests to cut costs, by excluding those at risk and betting only on a sure thing -- clients screened to exclude any detectable risks. Others will be dumped onto the increasingly overburdened public sector. They may also face employment discrimination, as they cannot qualify for the often-mandatory "benefit" of group health insurance -- or would raise the employer's premium if they were hired. FDA Backs Off On AL 721. Last week the FDA moved against two suppliers of AL 721 or related products: Ethigen Corpora- tion, the patent and trademark holder on AL 721, and Nutricology Inc., in San Leandro, CA. Protests began immediately and the FDA rescinded both actions in the same week. It appears that the central FDA office near Washington, DC did not even know about the actions of the regional offices until the protests began. The four people central to the negotiation for the AIDS com- munity were attorneys Jay Lipner and David Barr with Lambda Legal Defense in New York, Martin Delaney with Project Inform, and Curtis Ponzi, attorney for The Healing Alternatives Foundation in San Francisco. We spoke to both Lipner and Ponzi; they saw the outcome as a message of community empowerment, but Lipner com- mented that the ultimate results are unknown and warned that we must keep watching the FDA in the future. The New York Times ran a page-one story on these events on Sunday, June 26. ***** [Obsolete subscription information has been removed. See the latest issues for up-to-date information. -- sysop] &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display