Oct 30, 1991 - drop of mythology, misconcep- tion, folklore and a ... made against a backdrop of mythology, .... tential years of life lost in Canadi- an men ...
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VIEWPOINT * POINT DE VUE
AIDS: The fictions, the facts
Martin T. Schechter, MD, MSc, PhD, FRCPC F unding for all federal AIDS programs will expire on Mar. 31, 1993. During testimony before a parliamentary committee in 1991, Benoit Bouchard, the minister of national health and welfare, promised to provide more funds to continue critical initiatives in AIDS research, education and preven-
tion.' "The issue boils down to one question: Can we afford to be complacent about HIV? The answer is no. Living with HIV is costly - physically, emotionally and socially - to individuals, their families, friends, caregivers and communities. Its effects ripple through every part of our society."2 "Je suis persuade que si l'on fi fait de la propagation du virus du SIDA au Canada, nous nous exposerons a compromettre l'avenir social et economique de l'ensemble de la population canadienne.... Seuls des efforts soutenus nous permettront d'atteindre notre objectif commun: mettre un
Martin T. Schechter is a professor in the Department of Health Care and Epidemiology, Faculty of Medicine, University of British Columbia, and a national health research scientist of the National Health Research and Development Program, De-
partment of National Health and Welfare. 802
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Unfortunately, critical decisions are being made against a backdrop of mythology, misconception, folklore and a perceived competition for funds among health care researchers. frein a la propagation du VIH au Canada."3 By January 1993 there was no definite indication that any federal AIDS initiatives would exist beyond March 1993. Researchers, funding agencies, health care providers and frontline community workers and agencies have been left in a state of uncertainty about the future of their work. Unfortunately, critical decisions have and are being made against a backdrop of mythology, misconception, folklore and a perceived competition for funds among health care researchers.
Fear and loathing and the mythology of AIDS: The big lie - Part 1 In August 1991, the mother of a person with AIDS sent me a clipping from a local newspaper (North Shore News, North Vancouver, Aug. 7, 1991: 9) and asked
that I respond with a letter to the editor. The article stated that a big lie had been perpetrated by government and health officials, who have intentionally misled Canadians about the spread of HIV. According to the columnist, HIV can be transmitted much more easily than Canadians have been told and HIV is actually being
spread by food-service workers, on toilet seats and by the breath of infected people, Worrying about human rights with regard to AIDS, therefore, is "madness." The column typified a school of thought popular among some people, including physicians. Dr. Lorraine Day, an orthopedic surgeon from California, has gained considerable notoriety for her views.4 Similarly, the Canadian Police Association has argued that police officers should be given a list of HIV carriers so they can protect themselves from this easily transmitted scourge. LE 1 er MARS 1993
The big lie: Part 2 Not long after receiving that first column, I was sent two more newspaper articles (The Hamilton Spectator, Aug. 24, 1991: Al, Cl; The Globe and Mail, Oct. 10, 1991: A2 1) and the transcript from a national radio show (Ideas, CBC Radio, Toronto, Sept. 13, 1991). The gist of these articles and the broadcast was that government and health officials have been lying about AIDS, but in entirely the opposite direction: the AIDS virus is actually not spreading nearly as easily as we have been told, the risk of transmission has intentionally been blown way out of proportion, and far too much money has been spent on public education campaigns that have unnecessarily terrorized the "general population." Apparently this school of thought also has a sizeable following. Recently, no less a public health authority than Alan Fotheringham also weighed in on this subject (Maclean's, Toronto, Aug. 10, 1992: 48).
the government and health care officials have been awfully busy misleading the public. Unfortunately, the growth in HIV- and AIDS-related knowledge has been matched by growth in the number of myths and misconceptions associated with this disease. No wonder the public is confused about this illness and the government is long overdue in fulfilling its commitment to renew its national strategy.
iC.6
Clearly, not much common ground exists among these three schools of thought. However, there is one obvious area of agreement: for these past several years, MARCH 1, 1993
One of the most unfortunate byproducts of the confusion is the division among health researchers that has been fostered by government. I have heard several colleagues involved in other areas of research say that too much money is being spent on HIV/AIDS research and, consequently, money is being taken away from their own important areas. There are
ce qui suit? Alors lisez ce qui suit...
The big lie: Part 3 Around the time of the CBC Ideas broadcast, I attended a lecture by Professor Peter Duesberg, a molecular biologist now well known for calling into question conventional wisdom about the cause of AIDS.5 He stated that there has been a big lie on the part of the government and health care officials about the cause of AIDS and we have been intentionally misled about HIV's role in causing AIDS. In fact, HIV is a "harmless" agent, and other causes, such as the use of psychoactive drugs or "promiscuous" sexual activity, are likely responsible for the AIDS epidem-
Divide and conquer
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National Research Council Canada
Canad'
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two problems with this thinking. First, the appraisal of resources does not take into account that AIDS, perhaps because of the many stigmas attached to it, has not managed to attract privatesector funding at anywhere near the levels attained by many other diseases. More important, when investigators fall into the trap of believing that research funding is a zerosum game and bicker among themselves, they fall victim to a tacit divide-and-conquer strategy and are distracted from the real issues. The more critical question is whether resources should be poured into certain government programs and thus be made unavailable for cost-effective health research initiatives - military helicopters costing $80 million each are one example of dubious spending priorities.
increased attention they have received and must continue to receive in the near term: * AIDS is an important disease: Although it may not be the country's most important health care problem, it is far from being unimportant. In 1990, AIDS accounted for more than 32 000 potential years of life lost in Canadian men, surpassing the toll claimed by conditions such as stroke, colorectal cancer, diabetes, kidney disease and chronic lung disease. In the urban centres of Toronto, Montreal and Vancouver, AIDS has become the leading cause of death in young adult men. Even in the unlikely event that HIV transmission is halted tomorrow, there are already 20 000 to 30000 Canadians infected with HIV7 who will become ill in coming years and will need care, treatment and support.
The question is not whether Canada can afford to have an adequate federal funding initiative, but whether it can afford not to have it.
Seven truths about HIV and AIDS Is it possible to put HIV and AIDS into proper perspective? By any public health measure, AIDS is not the most important health-related problem facing Canada. Heart disease, cancer, accidents and violence remain among the most significant contributors to mortality and potential years of life lost and these killers continue to require urgent attention. Nevertheless, HIV and AIDS have some features that make them extraordinary and justify the 804
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* AIDS is a global catastrophe: It is estimated that more than 10 million people have already been infected with HIV. The World Health Organization predicts that by the next century that number will reach 30 to 40 million people, and 90% of them will live in developing countries. This may be a conservative estimate - the Harvard AIDS Institute has suggested that by 2000 the number of people infected with HIV could reach 120 million.8 Even if Canada is not affected to anywhere near the same degree as developing countries, it has a global responsibility to act
as a full partner in research initiatives that will help to end this pandemic. * AIDS is an extraordinary disease requiring extraordinary responses: This is only the second decade of the AIDS epidemic and only 8 years have passed since the discovery of HIV, and many critical questions remain unanswered about both. Despite much progress, the treatment of AIDS is far from curative and a concerted effort is needed to convert HIV infection into a chronic, manageable illness. Regrettably, AIDS has not yet generated large privatesector donations. For example, the Canadian Foundation for AIDS Research has been able to distribute only about $500 000 per year, compared with the millions of dollars donated by larger societies and* foundations that support research into other diseases. Thus, AIDS research is much more dependent on public funding. I hope this lack of private funding will be short lived. There are some signs, particularly highprofile fund-raising events, that suggest things may be beginning to change. * AIDS is far from being under control: The recent levelling off in the incidence of AIDS is due to the sharp declines in HIV incidence in gay men that occurred in the mid- to late 1980s and the effect of the prophylactic therapies that delay progression to full-blown AIDS. However, because at least 20 000 to 30 000 HIV-infected Canadians are expected to become ill in the future, the AIDS epidemic is still largely in front of us. Although much progress has been made in dramatically lowering the infection rate in gay men, behaviour change must be an ongoing, lifelong process that allows no room for complacency; even an upward slip of a single percentage point in the annual infection rate in gay men could represent the infection of thousands more people. HIV is a LE 1 er MARS 1993
series of overlapping epidemics. Even though the initial epidemic of HIV in gay men has come under considerable control, the risk of spread among street youth, injection drug users and prisoners appears to be high. Disadvantaged Canadians are at increasing risk of HIV and they require targeted interventions. * AIDS is a costly disease: Aside from the human tragedy, the burden of HIV on our health care systems and communities is considerable. The direct medical cost of caring for a person with AIDS for the length of the illness was estimated at $82 000 in 19889 and more recently at about $100 000.10 These costs will likely rise as newer and more expensive drugs are developed, as interventions are applied earlier, and as persons with HIV survive longer. As well, the indirect costs to Canada for each person with HIV infection are estimated to be between $300 000 and $800 000.9 * AIDS is a completely preventable disease: For most of our major killers there is no one factor that, if eliminated, would completely eradicate the disease. Smoking is one of the major causes of premature death in Canada but its elimination, although a critically important public health objective, would not eradicate heart disease, stroke, chronic lung disease or lung cancer. However, every case of HIV infection prevented is a case of AIDS averted, and for every case averted further transmission of the virus to others, and hence additional cases of AIDS, are prevented as well. Overall, the potential for AIDS prevention to be highly cost effective is as great or greater than for most of our society's other major killers. For example, if 1000 new cases of HIV infection were prevented, a total of $100 million in direct medical costs would be avoided, and there would be additional indirect cost savings of between $300 million and $800 milMARCH 1, 1993
lion. This led the Parliamentary Ad Hoc Committee on AIDS to conclude that even if the federal funding commitment for HIV/AIDS was quadrupled, cost savings would result if only 900 cases of infection were prevented each year.'0 0 Urgent and sustained action is required: Because AIDS is a relatively new disease that is highly dependent on public funding for research and prevention efforts, the federal government dedicated an average of $26 million annually to these efforts for 5 years, beginning with the 1988-89 fiscal year. While this was an important step, this stop-and-start funding approach had several negative effects. Because federal funding commitments are ending, some important research initiatives are already winding down; others are not beginning because of the uncertainty. Of even greater concern is the failure of young researchers to enter the field because of the funding uncertainty. The next phase of the National AIDS Strategy and federal funding initiatives should have been announced much earlier; it should not have been delayed until the waning moments of the 1992-93 fiscal year, or even later. The delay has already caused extraordinary and avoidable project shutdowns and start-up costs, and is a disservice not only to persons with HIV infection and persons at risk for HIV infection but also to all Canadian taxpayers. Moreover, if sustained action is to be achieved, a funding commitment of at least 5 years is needed. With most clinical trials, demonstration projects and prevention programs requiring several years for implementation and evaluation, a myopic funding extension of only 3 years, for example, would impose severe limitations within an instant of its announcement. There are underlying questions about Canada's commitment to funding health research and,
more generally, research and development, but these are beyond the scope of this article. In the specific area of HIV/AIDS, the question is not whether Canada can afford to have an adequate federal funding initiative, but whether it can afford not to have it. Viewed another way, it is certain that we will spend a considerable amount of money on HIV/ AIDS. We can either spend it now in a planned, rational and pre-emptive way that addresses the critical issues of prevention, improved delivery, and improved methods of care and support, or we can wait and pay the far higher social and financial costs that come later as we deal with the unnecessary, tragic and costly illnesses we have failed to prevent.
References 1. Bouchard B: Testimony before the Standing Committee on Health and
2. 3. 4.
5.
6.
7.
8.
9.
Welfare, Social Affairs, Seniors and the Status of Women, Ottawa, Oct. 30, 1991;4: 15 Ibid: 8 Ibid: 10 Goldman B: Doctors divided: AIDS and the physicians at San Francisco General. Can Med Assoc J 1988; 138: 736-741 Duesberg PH: HIV is not the cause of AIDS. Science 1988; 241: 514-517 Idem: AIDS: non-infectious deficiencies acquired by drug consumption and other risk factors. Res Immunol 1990; 141: 5-11 Schechter MT, Marion SA, Elmslie KD et al: How many persons in Canada have been infected with human immunodeficiency virus? An exploration using backcalculation methods. Clin Invest Med 1992; 15 (4): 325-339 Estimation of the prevalence of HIV and AIDS in the world, 1992, and projections to the years 1995 and 2000. In Mann JM, Tarantola DJM, Netter TW (eds): AIDS in the World 1992, Harvard U Pr, Cambridge, 1992 Fraser RD, Cox MA: The economic impact of AIDS in Canada. In AIDS - A Perspective for Canadians, Background Papers of the Report of the Royal Society of Canada, Ottawa, April 1988: 151-215
10. Confronting a Crisis. Report of the Parliamentary Ad Hoc Committee on AIDS, Ottawa, June 1990: 59-60 CAN MED ASSOCJ 1993; 148(5)
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