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By Bruce Mirken
AIDS Treatment News
The AIDS denialists, who dispute not only the role of HIV in AIDS but nearly all scientific knowledge about the epidemic, regularly claim that the very notion of AIDS as a distinct medical condition is a mistake. What medicine has identified as a major epidemic, they insist, is nothing of the sort. A number of variations on this theme have been put forth. Some have argued that AIDS is nothing but a "group fantasy" or "epidemic hysteria."(1) Others claim that several separate but real medical problems have been wrongly lumped together. ACT UP San Francisco has repeatedly claimed that "AIDS is over," suggesting that it did exist at one time but has somehow come to an end. While most in the denialist camp accept some physical cause or causes for the illness we call AIDS, they claim science has fundamentally misunderstood what is going on, leading to faulty conclusions about causation. "AIDS by definition is not new and is not a disease," the web site of HEAL Toronto declares. "AIDS is a new name for 29 old illnesses and conditions, including yeast infections, diarrhea, pneumonia, cancer and tuberculosis."(2)Christine Maggiore of the Los Angeles group Alive and Well adds that "every AIDS indicator disease occurs among people who test HIV negative," existed prior to AIDS, and has "medically proven causes that do not involve HIV."(3) AIDS, in this view, is just a new name given these old diseases when they occur in people who test positive for HIV antibodies. Furthermore, it is claimed that inclusion of a positive HIV test in the criteria for an AIDS diagnosis has created a phony connection between these illnesses and HIV: "Pneumonia + positive HIV test = AIDS," Maggiore writes, but "Pneumonia + negative HIV test = pneumonia," thus creating "the illusion of a perfect correlation."(4) Though factually wrong, such statements appear regularly in denialist literature. Another complaint is that the number of AIDS cases has been artificially increased by repeated changes in the official AIDS definition. Adding more conditions to the definition, it is argued, pumps up the number of cases even though those new cases may not even be ill.(2,4) What Was New in 1981?
Prior to 1980 KS and PCP were extraordinarily rare in the U.S. Annual incidence of KS ranged from 2.1 to 6.1 cases for every 10 million people,(7) usually occurring in older men of European descent. The disease generally progressed slowly, with an average survival time of 8-13 years.(7,8) PCP was nearly as rare, and the drug used to treat it, pentamidine isothionate, could only be obtained through the CDC's Parasitic Disease Drug Service, which kept detailed statistics. Strictly a disease of people with weakened immunity due to disease, cancer chemotherapy or immune- suppressive treatment for organ transplantation, PCP had "never been convincingly demonstrated to occur in an immunologically normal adult."(9)In one study 98 percent of patients had known immune defects, and the others were all seriously ill infants. Even though most were quite sick even before their PCP, the disease often responded well to treatment and relapses were rare.(10) These new PCP and KS cases shattered the pattern. Most patients were young men, often in their 20s and 30s, with no identifiable reason for weakened immunity. Their KS was "fulminant, malignant"(8) and rapidly progressing. Some had both PCP and KS, and most had a cluster of other problems including persistent fever, weight loss, swollen lymph nodes, and other infections usually associated with weakened immunity, including cytomegalovirus and toxoplasmosis. This unremitting barrage set victims on a downward spiral that commonly ended in death within a year.(5,6,8,9,11,12,13,14) This onslaught of infections in people with no known reason for being sick was so unusual that the usually reserved British journal The Lancet called it "bizarre" twice in one brief commentary.(15)Patients also showed unexplained weakness in their immune responses, with a consistent pattern of defects in their cellular immunity.(5,6,8,9,11,12) The physicians treating these patients had no doubt they were seeing a new clinical syndrome ("syndrome" is the medical term for a group of signs or symptoms that appear together and indicate a particular condition). And these doctors weren't babes in the woods. Several treated large numbers of gay men living a "fast lane" existence including multiple sex partners and recreational drugs, while others worked at urban hospitals treating many drug addicts, yet none of them had seen anything like this.(16) The Evolving Definition of AIDS As with any new syndrome, scientists' understanding of AIDS evolved gradually, with the most obvious and severe manifestations noticed first and rarer or subtler ones recognized later. A careful review of how the CDC has defined a case of AIDS contradicts the cartoon version presented by the denialists and shows that the definition has evolved cautiously--perhaps too cautiously at times. (For simplicity this analysis will focus on the CDC's AIDS case definition. While not followed universally, health authorities in other industrialized countries often use the CDC's work as a starting point. The enormous subject of AIDS in Africa and other third world areas requires a separate article.) The CDC first published an AIDS case definition in September, 1982. AIDS was simply defined as "a disease, at least moderately predictive of a defect in cell-mediated immunity, occurring in a person with no known cause for diminished resistance to that disease." 13 specific diseases were listed.(17) HIV (then known as HTLV-III or LAV) was discovered in 1984, but the CDC waited a full year, until after a discussion at the Conference of State and Territorial Epidemiologists, before revising the AIDS definition. This new definition added a small number of conditions which would be considered AIDS-defining if they occurred in a person with a positive HIV test. But the original list of infections still triggered an AIDS diagnosis without an HIV test if they occurred in a person with depleted CD4 (T-helper) cells and no known reason for immune dysfunction.(18) It was soon clear that patients commonly experienced a much broader array of illnesses than the indicator diseases listed by the CDC. In 1987 the agency noted, "It became apparent that some progressive, seriously disabling, even fatal conditions (e.g. encephalopathy, wasting syndrome) affecting a substantial number of HIV-infected patients were not subject to epidemiological surveillance, as they were not included in the AIDS case definition." So the agency made another cautious revision, with encephalopathy (dementia) and wasting syndrome being the most notable additions to the list of indicator conditions.(19) But the CDC's AIDS definition was still capturing only a narrow piece of the picture, and not always the most severe piece. "There are very many people who are very ill who don't have AIDS by the CDC definition," said Los Angeles AIDS specialist Scott Hitt, M.D. (who went on to head President Clinton's AIDS Council) in 1990. "There are also people with one KS lesion (qualifying them for an AIDS diagnosis) who are doing very well."(20) Part of the problem was that the only opportunistic infections that made it into the CDC's database were whatever conditions triggered a patient's initial diagnosis. CDC spokespeople acknowledged they simply didn't have the means to track the rest.(20) Pressure mounted on the agency to adopt a definition that was more reflective of the real-world clinical experience of the most seriously ill patients, and after a lengthy period of discussion and debate, the current definition went into effect in January, 1993. For the first time it allowed an AIDS diagnosis based purely on an immune system measure: a CD4 cell count below 200 or a CD4 percentage below 14. Based on strong epidemiological evidence, three conditions were also added as AIDS indicator diseases in people with HIV: invasive cervical cancer, pulmonary tuberculosis and recurrent pneumonia (defined as two or more episodes within one year).(21) One thing did not change: The core list of 12 opportunistic infections--PCP, toxoplasmosis, etc.--that dated from the mid-1980s would still trigger an AIDS diagnosis even without a positive HIV test.(21,22) In other words--and contrary to the denialists' claims--a positive HIV test has never been required to diagnose AIDS in people with these otherwise rare illnesses. At this point it is useful to refer again to Maggiore's version of the AIDS definition, variations of which appear throughout denialist literature: "Pneumonia + positive HIV test = AIDS," but "pneumonia + negative HIV test = pneumonia." In fact, pneumocystis pneumonia triggers an AIDS diagnosis regardless of HIV status, and in HIV- positive persons, more conventional bacterial and viral pneumonias do not automatically trigger an AIDS diagnosis. To qualify as AIDS they must happen at least twice within a year, because only such multiple episodes are strongly associated with immune suppression.(21) Simply put, the "illusory correlation" so harped on by the denialists is an illusion of their own invention. Another favorite denialist complaint is that some of the toxicities of certain AIDS drugs match items in the list of AIDS-defining conditions. As with the assertions discussed above, this claim is based on a skewed and often blatantly inaccurate reading of the case definition. In any case, the list of toxicities often cited as "AIDS by prescription"(23) consists entirely of conditions whose association with HIV was well established before AZT and other antiretrovirals came into widespread use. Duesberg's Epidemiology and Other Mysteries A related but distinct thesis has been advanced by University of California Berkeley Prof. Peter Duesberg: AIDS is in fact several separate epidemics lumped together. Proof, he and colleague David Rasnick suggest, lies in the fact that members of different risk groups get different diseases. KS, he notes, is seen mostly in gay men, while "weight loss and tuberculosis predominate in intravenous drug users, and pneumonia and candidiasis are almost the only two of the 30 AIDS-defining diseases that are diagnosed in hemophiliacs."(24) These "distinct, subepidemic-specific diseases," Duesberg and Rasnick argue, rule out a common cause, infectious or otherwise. They further insist that AIDS indicator conditions can be divided into those that are immune deficiency-related, like PCP, and those that aren't, such as KS. A significant proportion of AIDS cases, they note, are diagnosed based on these "non immune deficiency diseases."(24)
As for his claims about differing opportunistic infections in different risk groups, it is hardly a surprise that populations with widely varying behaviors, lifestyles and health risks would experience severe immune deficiency somewhat differently, and such differences have indeed been noted. But even a cursory glance at the medical literature quickly dynamites Duesberg's claim that these differences are so dramatic as to constitute separate epidemics. For example, five years before Duesberg and Rasnick's assertion that pneumonia and candidiasis are "almost the only two" AIDS-defining conditions seen in hemophiliacs, a European hemophiliac cohort found that of 37 diagnosed with AIDS, 6 had toxoplasmosis, 3 had wasting syndrome, 3 had dementia, 2 had MAC, 1 had CMV and 1 had lymphoma as their AIDS- diagnosing illness.(25) The same Duesberg/Rasnick article touts both the "drug-AIDS hypothesis" and the "new name for old diseases" theory with an impressive list of references purportedly showing that AIDS-defining illnesses had been widely identified in drug users prior to and without AIDS. Duesberg's chart has at times been borrowed by other denialists.(24,26) But again his "evidence" wilts under close examination. For example, one reference he cites repeatedly--as evidence that immune deficiency, candidiasis, lymphadenopathy and weight loss had been documented in heroin addicts pre-AIDS- -is 1973 article by Pillari and Narus from the American Journal of Nursing. But the article, it turns out, isn't a study but simply an anecdotal description of patients seen in one treatment program. It gives neither numbers of cases nor occurrence rates for any of the conditions described.(27) In fact, Pillari and Narus specifically mention just one of the four conditions Duesberg attributes to them, lymphadenopathy. Candidiasis is perhaps implied by nonspecific references to "fungal infections," while immune deficiency and weight loss are implied even more vaguely and indirectly. And although Duesberg's chart lists all four conditions as "AIDS defining," nothing in the article comes remotely close to describing an illness that would meet the criteria for an AIDS diagnosis.(27) Finally, a different spin has been put out by ACT UP San Francisco. Some of their materials echo the general denialist notion that the whole epidemic is a scam, but their most-repeated phrase in recent years has been, "AIDS is over." Such statements often refer to declining numbers of AIDS cases and deaths.(28) But extensive evidence links those declines to improved anti-HIV treatment (for more on this see AIDS Treatment News' special issue, "Treatment and Survival," Sept. 8, 2000). And for the families of the 10,198 people who died of AIDS during 1999 according to the most recent CDC figures,(29) AIDS is certainly not over. References 1. Schmidt, Casper G., "The group-fantasy origins of AIDS," in THE AIDS CULT, edited by John Lauritsen and Ian Young, Asklepios USA, 1997. 2. MacDonald, Robert, "Healthy skepticism about HIV," HEAL Toronto web site, www.harmsen.net/heal/healthy_skeptic.html 3. Maggiore, Christine, WHAT IF EVERYTHING YOU KNEW ABOUT AIDS WAS WRONG? American Foundation For AIDS Alternatives, p. 51. 4. Maggiore, p. 1. 5. Gottlieb, MS, and others, "Pneumocystis pneumonia--Los Angeles," MORBIDITY AND MORTALITY WEEKLY REPORT, 1981: 30: 250-52. 6. Friedman-Kien, A and others, "Kaposi's sarcoma and pneumocystis pneumonia among homosexual Men--New York City and California," MORBIDITY AND MORTALITY WEEKLY REPORT, 1981: 30: 305-08. 7. Safai, B. and Good, R., "Kaposi's sarcoma, a review and recent developments," CLINICAL BULLETIN, 1980: 10: 62-69. 8. Friedman-Kien, A., "Disseminated Kaposi's sarcoma syndrome in young homosexual men," JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY. 1981: 5(4) 468-71. 9. Masur, H. and others, "An outbreak of community-acquired pneumocystis carinii pneumonia," NEW ENGLAND JOURNAL OF MEDICINE, 1981: 305: 1431-8. 10. Walzer, Peter D. and others, "Pneumocystis carinii pneumonia in the United States," ANNALS OF INTERNAL MEDICINE, 1974: 80: 83-93. 11. Gottlieb, Michael and others, "Pneumocystis carinii pneumonia and mucosal candidiasis in previously healthy homosexual men," NEW ENGLAND JOURNAL OF MEDICINE, 1981: 305: 1425-31. 12. Siegal, Frederick and others, "Severe acquired immunodeficiencies in male homosexuals, manifested by chronic perianal ulcerative herpes simplex lesions," NEW ENGLAND JOURNAL OF MEDICINE, 1981: 305: 1439-44 13. Durack, David, "Opportunistic infections and Kaposi's sarcoma in homosexual men," NEW ENGLAND JOURNAL OF MEDICINE, 1981: 305: 1465-7. 14. Hymes, Kenneth and others, "Kaposi's sarcoma in homosexual men--a report of eight cases," THE LANCET, 1981; ii: 598-600. 15. "Immunocompromised homosexuals," THE LANCET, 1981, ii: 1325-6. 16. Shilts, Randy, AND THE BAND PLAYED ON, updated edition, Penguin Books, 1988, chapters 2-8. 17. "Current trends update on acquired immune deficiency syndrome (AIDS)--United States," MORBIDITY AND MORTALITY WEEKLY REPORT, 1982: 31: 508-08. 18. "Current trends revision of the case definition of Acquired Immunodeficiency Syndrome for National Reporting-- United States," MORBIDITY AND MORTALITY WEEKLY REPORT, 1985: 34: 373-5. 19. "Revision of the CDC Surveillance Case Definition for Acquired Immunodeficiency Syndrome," MORBIDITY AND MORTALITY WEEKLY REPORT, 1987: 36(supplement no. 1S). 20. Mirken, Bruce, "AIDS Name Game: Help or Misery Turns on Obsolete Definition," LOS ANGELES READER, May 25, 1990, p. 3-4. 21. "1993 revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults," MORBIDITY AND MORTALITY WEEKLY REPORT, 1992: 41: RR-17. 22. Kitty Bina and Dr. Richard Selick, CDC, personal communication. 23. Maggiore, p. 30. 24. Duesberg, P. and Rasnick, D., "The AIDS dilemma: Drug diseases blamed on a passenger virus," GENETICA, 104:85- 132, 1998. 25. Aronstan, A. and others, "HIV infection in haemophilia- -a European cohort," ARCHIVES OF DISEASE IN CHILDHOOD, 1993: 68: 521-24. 26. Maggiore, p. 56. 27. Pillari, George, and Narus, June, "Physical effects of heroin addiction," American Journal of Nursing, 1973, 73: 2105-8. 28. ACT UP San Francisco press release, "ACT UP San Francisco launches survive AIDS campaign," March 27, 2000. 29. U.S. HIV and AIDS Cases Reported through December 1999, year-end edition, Vol. 11, no. 2. 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 E-mail: aidsnews@aidsnews.org
Editor and Publisher: John S. James Associate Editor: Tadd T. Tobias Reader Services: Tom Fontaine and Denny Smith Operations Manager: Danalan Richard Copeland 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: $270/year. Includes early delivery of an extra copy by email. Nonprofit organizations: $135/year. Includes early delivery of an extra copy by email. Individuals: $120/year, or $70 for six months. Special discount for persons with financial difficulties: $54/year, or $30 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. ISSN # 1052-4207 Copyright 2001 by John S. James. |