- Email: [email protected]
AIDS epidemic
Returning home: reflections HIV/AIDS epidemic
on
the USA’s response to the
Michael H Merson I returned to the USA a little over a year ago, having lived abroad for 18 years. Most of this time I worked for the World Health Organization (WHO) in Geneva. The first 13 of those years I was involved with programmes aimed at reducing mortality from the major childhood killers-diarrhoeal diseases and pneumonia. For the past 5 years I was privileged to serve as Director of the WHO Global Programme on AIDS. In that capacity I worked with officials, community-based governmental organisations and private citizens from over 150 countries. I saw incredible suffering-AIDS patients visiting clinics in Uganda pleading for oral antifungal drugs so that they could swallow their food, newborn babies in orphanages in Thailand abandoned there by HIV-infected mothers, commercial sex workers in Bombay having sex with more than ten clients a night to buy tomorrow’s food for their children. I also witnessed heroic efforts by doctors, nurses, community volunteers, and activists, getting much done with few resources. The America to which I returned differs in many ways from the one I left. Economic insecurity now pervades its society, even though per-capita income in real terms has increased 45% since 1970. As a result of inequality in wages and an increase in immigration and single-parent families, the income gap between the rich and poor has widened dramatically and is now greater than that in any other industrialised nation. Crime rates have soared (though they are now declining), especially in cities, much of it related to the use and sale of illegal drugs. Most strikingly, in a little over a decade AIDS has become the leading cause of death in young adults aged 25-44 years, and solely on the basis of those infected so far, will result in more American deaths than that inflicted by all wars since the Civil War.’1 I was aware that the AIDS epidemic had been severe in certain populations and areas of the USA, but I was wholly unprepared for the attitudes and beliefs of much of the American public and politicians towards AIDS, especially AIDS prevention. Many Americans continue to believe that AIDS is mainly a disease of gay white mendespite the fact that in the 96 largest metropolitan areas in the USA half all new HIV infections are transmitted through injecting drug use, a quarter through heterosexual intercourse (70-80% of these are in women), and only a quarter through homosexual intercourseand the greatest
Department of Epidemiology and Public Health, Yale University School of Medicine, PO Box 20834, New Haven, CT 06520, USA (Michael H Merson MD)
increase in infections during the past decade has been in African-American and Hispanic populations. Today, AIDS case rates are substantially higher in AfricanAmericans and Hispanics than in whites3 and an estimated 3% of African-American and 2% of Hispanic men in their thirties are living with HIV.4 Few Americans appreciate the global dimensions of the epidemic. There is a common belief that the epidemic started in Africa, but few know the full extent of the problem on that continent-that it is the place where half the 7500 new infections worldwide occur each day, that there are many African cities where one in three pregnant women are now infected, and that in some areas households can spend up to a third of their annual cash income on monthly medical care or a single funeral. More is known about the epidemic in Asia, particularly in Thailand (it will be the country’s leading cause of death by the year 2000), but there is little appreciation of how severely the epidemic has affected India, its recent rapid spread in Vietnam and Cambodia, and its potential for causing even greater havoc in China, the Philippines, and Indonesia. By the end of this decade AIDS could cost Asian economies as much as$52 billion. Although geographically closer, there is seemingly little awareness of the epidemic in Latin America (apart from the erroneous association of AIDS with Haitians), despite rising rates of HIV infection in Honduras, Brazil, and Argentina. When it comes to prevention, school boards and chancellors are fearful of discussing sexual behaviour in the classroom-despite the fact that one in four new HIV infections now occur in people under age 21, television shows most watched by American teenagers contain 2000 references to sexual intercourse and the like yearly, and, nationwide, three-quarters of high-school students have had sexual intercourse by the time of graduation. (In New Haven, Connecticut, 23% of sixth [age 12 years] and 49% of eighth [14 years] grade students admit to having sexual intercourse.) There is no more important group in American society that needs frank information and skills to protect themselves than its youth. The strong evidence that sex education in schools leads to safer sex, including an increase in condom use and a decrease in the number of sexual partners,5 needs to be acted upon and not feared. I am perplexed by the attitude towards condoms. It is not uncommon for people to say that they do not work, despite evidence that when used correctly they are highly efficacious.6 Claims of high breakage rates are misleading because they often fail to take into account the fact that the persons who break condoms are generally repeat breakers. Then there is condom advertising. In conservative Switzerland, which has one of the most effective AIDS prevention programmes in the world, "STOP SIDA" signs with a pink condom sitting inside the letter "0" are everywhere. Since my return to the USA, I
1673
have not seen a condom advertisement on a major television network or a poster promoting a particular brand, despite the fact that the public is generally supportive of condom advertising. At the pharmacy near my office, close to a large university hospital, the condoms are located on the wall behind the pharmacist’s counter, so one can only buy a packet by asking for it. Why have we not made condoms as easy to purchase as other pharmacy products and found acceptable ways to popularise their use? Why have we not successfully portrayed the condom
caring, responsible partner? dismayed by the US approach to HIV prevention injecting drug users. An Institute of Medicine
user as a
I
am
among
concluded that needle and syringe exchange programmes are effective in preventing spread of HIV and do not increase the use of illegal drugs.7 These programmes are more effective when they are implemented through community outreach activities, and
report issued last
autumn
HIV prevalence rates among injecting drug users are below 5%. Data from Connecticut have shown that removing paraphernalia possession laws and prescription requirements for purchase of syringes leads to a large increase in pharmacy purchases and to substantial decreases in street purchase of syringes and needles and in the proportion of injecting drug users who reported
sharing injecting equipment.8 Despite these findings, USA law prohibits use of federal funds to support syringe exchange programmes, and very few states have instituted deregulation laws of the type that now exist in Connecticut; and there are frequent calls for more research to yet again prove the effectiveness of such initiatives. We should support efforts to discourage persons from initiating drug use and limit supplies on our nation’s streets. But, for those who cannot or will not stop injecting illegal drugs, the once-only use of sterile needles and syringes is the safest, most effective way to limit HIV transmission. It is important to realise that such programmes indirectly diminish sexual transmission as well, since most (about 80%) of HIV-infected heterosexual men and women who do not use injecting drugs have been infected through sexual contact with an HIV-infected injecting drug user.2 When it comes to care, much has been written about the great progress we have made in developing drugs for treatment of antiretroviral infection, and there is mounting evidence that it is better to treat HIV infection early in the course of the illness. But few Americans seem to realise the difficulties that many HIV-positive persons have in gaining access to these expensive drugs. There seems to be an all too common scenario. AIDS patients lose their job either because they can no longer work or are fired. In losing their job they lose their health insurance, joining more than 40 million others in the nation. They then spend their remaining assets and savings to purchase the drugs and the care they need. When resources run out, they become eligible for Medicaid. What will happen if federal law changes and Medicaid funds are given through block grants to the states and the entitlement is removed? With our attitudes toward AIDS, many states, now facing fiscal constraints, might find it politically advantageous to provide fewer resources for AIDS patients than are currently given. Furthermore, as more states try to shift to Medicaid-managed care plans, HIV-infected persons have had difficulties with access to experienced providers and needed drugs. It is essential that states formulate these plans to avoid such difficulties.
1674
Why have we not responded? Working at one of the nation’s finest academic institutions, I have sought advice from faculty colleagues in American history, law, and public health as to why our national response to the AIDS epidemic has been so inadequate. I have tried to find out what it is about our past that makes it so difficult for us to deal rationally with an epidemic of a fatal sexually transmitted disease. Two things are apparent. First, as a nation we have never "conquered the Victorian within ourselves",9 preferring to deny our sexual behaviour even when the behaviour presents an untold risk to ourselves and our loved ones. As a consequence, we have turned a public health crisis into a moral commentary equating disease with sin. Second, because HIV infection is contagious and presumed fatal, and AIDS is a disfiguring illness at its end stage that elicits fears about our own mortality, we have stigmatised AIDS and those populations with high rates of HIV infection. It is especially unfortunate that many of those infected have been from populations already stigmatised because of sexual orientation, race, occupation (eg, sex workers), or other behaviour (eg, injecting drug use). The history of syphilis and gonorrhoea in the USA suggests that we could have partly overcome this moral hypocrisy and’ stigmatisation if we could have readily found a cure that successfully treats the disease and prevents HIV transmission. Perhaps we would have responded better if the epidemic had become more established in middle-class America, in the mainly white, heterosexual population that elects most of our political leaders. But, this has not been the case. The HIV/AIDS epidemic has become entrenched in our poor, undeserved African-American and Hispanic populations who are often disenfranchised and have had little political impact at the federal and state levels. Even in areas where they are politically strong, African-American and Hispanic leaders have been reluctant to provide the necessary advocacy. It is the combination of our moral and social attitudes towards AIDS and the inability to bring about the needed response that keeps us at a continued risk of responding inadequately to the epidemic. The one exception has been the gay community, which has accomplished much. Faced with a catastrophic epidemic and profound homophobia during the 1980s, homosexual men mobilised at the grass roots level and literally fought for their survival-for the needed community-based prevention campaigns, for early access to drugs, and for their human rights. They were successful in great part because they were politically powerful voting blocks in cities such as San Francisco and New York, were articulate and highly knowledgeable in the use of the media, and focused their efforts on one issue (the AIDS epidemic). Increasing rates of infection in gay men demonstrate the need for their sustained activism and for support of their prevention efforts over the long haul. What is far from clear, however, is how to successfully transfer these effective strategies to the underserved and less well-educated poorer communities of America who face so many social, economic, and health problems, and who lack political power. The critical question is, can we Americans mount the necessary response? Many of our leading public-health figures and activists have offered blue prints and strategies for such a response. Here are my recommendations, offered as a returning veteran of the epidemic, who wants his country to provide an example for the world.
need to act on the lessons we have learned and progress we have made 15 years into the epidemic. Let us all accept that AIDS prevention is not perfect but it works.."," Arguments about the efficacy of sex education in schools, condom promotion campaigns, and syringe exchange programmes need to be turned into discussions about how best to get these programmes carried out in different cultures and settings. Their implementation usually means involvement of and support to communitybased organisations. It also may require removing structural and environmental barriers or constraints to protective action such as changes in national, state, and local laws and policies. Likewise, we need to remedy the major population and demographic gaps in access to care and standard therapies so that all those infected have an equal chance of living successfully with the virus. Through regulation and legislation we need to assure that all those
First,
we
providing
‘
care,
including managed-care organisations,
offer appropriate and comprehensive care for all HIVinfected individuals. We cannot prevent infection with a vaccine or cure those infected, but we are far from helpless. As a result of our programmatic and scientific advances, we can greatly reduce the risk of infection and offer a longer, higher quality life for all those infected. We also need to step back and ask some questions whose answers might help our response to the epidemic, as well as to other public health problems we might face in the future. For example, we should understand better why our political and legal systems have not responded adequately to this epidemic and why our sexual attitudes derived over generations have been such a barrier to effective policies. We should examine how the media and its messages, activist groups, service organisations, and religious groups have affected our policies and our response. A closer examination of the experience of earlier social and political movements to discern applicable lessons for the refinement of HIV policy would also be useful. In addition, we need to think more about what we can do to remove the stigma associated with HIV infection, for until that happens our response will continue to be inadequate. We should also look much more carefully at the response of others to the epidemic, especially to the countries of northern Europe, where the epidemic is far more under control. Second, we should keep to a minimum needless debates and the sensationalism that detract us from addressing the main barriers to a successful response. Our publications and conference programmes are filled with polemics. For example, we argue over the benefits of targeting prevention efforts at specific populations versus directing them to the general population. In fact, we know that it is highly costeffective to address prevention efforts as early as
populations at highest risk," but it is also provide universal messages to the general to population prevent discrimination against those being to to those who targeted, convey information intermittently practice high risk behaviour, and to build up popular support for the lifting of restrictions on sales of condoms, needles, and syringes. Similarly, we debate the merits of short-term and long-term control measures when both are important. In the short-term we must promote safer sex practices and provide adequate treatment of sexually transmitted diseases;12 in the longterm we need to educate and employ women so that they will be able to possible
essential
to
to
enhance their economic and social status and place themselves in situations of risk.
not
have
to
The media also distracts us. My impression is that many more Americans know about the Florida dentist that infected six of his patients (the only such instance worldwide we know about),13 the AIDS patient who received bone marrow from a baboon, or the recent disqualification of a boxer (Tommy Morrison) because he was found to be HIV-infected, than know the facts about HIV prevention. It is not that some of these events are not interesting or worthy of some discussion, it is rather that, by demanding so much of our attention, they help contribute to our denial of the seriousness of the problem and our unwillingness to adequately confront the issues that need greatest attention. I think it would be useful for the media industry to take a fresh look at the impact it is having on our national response. Third, we need to make rational policy decisions based on sound public-health principles and not on moral grounds. Such decisions will continue to be difficult, as has been evident, for example, in the recent debates about HIV testing. Despite overwhelming epidemiological evidence to the contrary, we remain one of the few nations that requires those seeking a visa to visit the USA to declare their HIV status. Efforts to pass federal legislation requiring that HIV-positive persons be discharged from the military, so far unsuccessful, continue. There are calls for mandatory testing of pregnant women, since there is now effective therapy for reducing perinatal transmission, and of newborn babies as a means of assuring optimum care for those born infected. Although the weight of evidence favours voluntary testing in both mothers and newborn babies, this can only be achieved by providing greater access to health services for pregnant women. Home kits have recently become available for obtaining blood specimens on filter paper that can be sent to a registered laboratory for measurement of HIV-antibody. If used correctly, they may help to facilitate confidential testing and thus lead to early treatment. 14 Under development are kits that will rapidly detect HIV-antibody in saliva or urine, similar to those for detecting pregnancy. One can imagine them used inappropriately in hospitals, clinics, prisons, places of employment, and immigration offices. In view of the possible social and psychological implications, a decision as to whether or not to make these kits commercially available for over-the-counter sales demands sound research and rational analysis. Fourth, our research agenda must be strengthened and supported. Recent Congressional rhetoric about the greater importance of cardiovascular and cancer research compared with AIDS research has been but another example of a debate over morality. We are in the midst of an epidemic whose end is nowhere in sight that affects those in the most productive years of life. Many of our recent gains in medicine and public health have been based on the results of biomedical and behavioural research supported by the federal government. The same is and will hold true for AIDS. The Office of AIDS Research, whose task it is to coordinate AIDS research at the National Institutes of Health, deserves full support. The recent evaluation of this office has resulted in a thoughtful research agenda that, under its leadership, offers the best hope for even more effective therapy, a preventive vaccine, a vaginal virucide for women, and better social and behavioural approaches to prevention and to dealing with the consequences of infection among those infected and affected. We need more investigator-initiated research, especially in the
1675
laboratory, but
the
require centres of excellence than can ensure a multidisciplinary approach towards our basic and intervention-oriented, psychosocial, at
same
time
we
and behavioural research. Our behavioural intervention research should focus particularly on those populations most vulnerable to HIV infection and in urgent need of preventive interventions, including gay youth and young adults (especially AfricanAmerican and Hispanic people); disenfranchised and
impoverished women, heterosexual men (again, especially African-American and Hispanic); inner-city youth; and out of treatment substance abusers and their sexual partners. This research should not only be targeted at the individual level, but also should examine the impact of broader interventions (eg, among drug-using or sexual networks or community-wide groups) that change behavioural norms and, as a consequence, affect individual behaviour. While appreciating the sensitivities involved, we should also undertake studies to learn more about the determinants of risk behaviour among HIVinfected persons and test interventions to reduce their behaviours that place others at risk. It is likewise essential to expand efforts to learn more about the impact of drug and alcohol use on the sexual transmission of HIV. Lastly, we need to restructure our national response and have the courage to do what is right to save lives. Much has been written about the need for our federal government to produce and implement a national plan that would adequately respond to the epidemic.1,15 So far this has not happened. In fact, social and political forces in the USA are, if anything, pushing our national response backwards, which can only result in more sickness and death; this is tragic since we have the resources to do what is needed. We must find a way to turn this around without drawing so-called liberal-conservative lines. To do so we must first and foremost learn to live with the virus and the disease in a spirit of social tolerance and understanding. In this year of the presidential election I can think of no more important public health issue about which our candidates should demonstrate bipartisan support. How courageous it would be if they pledged to re-examine the sound recommendations of the now dissolved national AIDS Commission and prepare and carry out a comprehensive AIDS prevention programme that involved governmental and non-governmental structures and the private sector, no matter what the political implications. Hopefully, Americans are now ready as a nation for frank talk and bold action. Concurrently, affected communities around the country could do more. The gay community, AfricanAmerican and Hispanic communities, and those who care about women, children, and the poor could all demand an end to the business-as-usual approach to prevention and a rational health care policy for those infected. Internationally, there is also much to be done under the new United Nations Programme on AIDS (UNAIDS)
1676
which began its work this year under the leadership of Dr Peter Piot. This programme, which has equal and joint ownership of six UN agencies, including WHO, is the first of its kind in the UN system. It is a test as to whether the UN agencies can work together around a single problem that threatens the social fabric, economic development, and political stability of many nations. The USA will hopefully provide the necessary financial and political support to make it a success. The AIDS epidemic has presented us with perhaps the greatest public health and social challenge of this century and the next. Today, the number of new infections in the USA is about equal to that of persons dying; this must not continue. But it is not too late-if we base our public AIDS policy on scientific knowledge data, if we apply sound public health principles and not moral judgments to our efforts, and if the leaders in American society have the political courage to do what is needed. I thank Tom Coates and Peter
Salovey for their helpful
comments.
References 1 2
3
4 5
6
7
8
9
10 11 12
13
14 15
Francis DP. Toward a comprehensive HIV prevention programme for the CDC and the nation. JAMA 1992; 268: 1444-47. Holmberg SD. The estimated prevalence and incidence of HIV in 96 large US metropolitan areas in the United States. Am J Publ Hlth 1996; 86: 642-54. Centers for Disease Control and Prevention. First 500,000 AIDS cases, United States. MMWR (Morbid Mortal Wkly Rep) 1995; 44: 849-53. Rosenberg PS. Scope for the AIDS epidemic in the United States. Science 1995; 270: 1372-75. Kirby D, Short L, Collins J, et al. School-based programs to reduce sexual risk behaviors: a review of effectiveness. Publ Hlth Rep 1994; 109: 339-60. de Vincenzi I. European Study Group on Heterosexual Transmission of HIV. A longitudinal study of human immunodeficiency virus transmission by heterosexual partners. N Engl J Med 1994; 331: 341-46. Normand J, Vlabov D, Moses LE. Preventing HIV transmission: the role of sterile needles and bleach. Panel of exchange and bleach distribution programs. Commission on Behavioural and Social Sciences and Education, National Research Council and Institute of Medicine. Washington DC: National Academy Press, 1995. Groseclose SL, Weinstein B, Jones TS, et al. Impact of increased legal access to needles and syringes on practices of injecting drug users and police officers: Connecticut, 1992-1993. J Acquir Immun Def Syndr 1995; 10: 82-89. Brandt AM. No magic bullet: a social history of veneral disease in the United States since 1980 (expanded ed). New York, Oxford University Press, 1987. Office of Technology Assessment. The effectiveness of AIDS prevention efforts. Washington, DC: US Congress, September, 1995. World Development Report 1993. Investing in health. Oxford: Oxford University Press, 1993: 99-107. Grosskurth H, Mosha F, Todd J, et al. Impact of improved treatment of sexually transmitted diseases on HIV infection in rural Tanzania: randomized controlled trial. Lancet 1995; 346: 530-46. Centers for Disease Control and Prevention. Investigations of persons treated by HIV-infected health care workers. MMWR (Morbid Mortal
Wkly Rep) 1993; 42: 329-31; 337. Phillps KA, Flatt SJ, Morrison KR, et al. Potential use of home HIV testing. N Engl J Med 1995; 332: 1308-10. Stryker J, Coates TJ, De Carlo P, et al. Prevention of HIV infection: looking back, looking ahead. JAMA 1995; 273: 1143-48.
on
the USA’s response to the
Michael H Merson I returned to the USA a little over a year ago, having lived abroad for 18 years. Most of this time I worked for the World Health Organization (WHO) in Geneva. The first 13 of those years I was involved with programmes aimed at reducing mortality from the major childhood killers-diarrhoeal diseases and pneumonia. For the past 5 years I was privileged to serve as Director of the WHO Global Programme on AIDS. In that capacity I worked with officials, community-based governmental organisations and private citizens from over 150 countries. I saw incredible suffering-AIDS patients visiting clinics in Uganda pleading for oral antifungal drugs so that they could swallow their food, newborn babies in orphanages in Thailand abandoned there by HIV-infected mothers, commercial sex workers in Bombay having sex with more than ten clients a night to buy tomorrow’s food for their children. I also witnessed heroic efforts by doctors, nurses, community volunteers, and activists, getting much done with few resources. The America to which I returned differs in many ways from the one I left. Economic insecurity now pervades its society, even though per-capita income in real terms has increased 45% since 1970. As a result of inequality in wages and an increase in immigration and single-parent families, the income gap between the rich and poor has widened dramatically and is now greater than that in any other industrialised nation. Crime rates have soared (though they are now declining), especially in cities, much of it related to the use and sale of illegal drugs. Most strikingly, in a little over a decade AIDS has become the leading cause of death in young adults aged 25-44 years, and solely on the basis of those infected so far, will result in more American deaths than that inflicted by all wars since the Civil War.’1 I was aware that the AIDS epidemic had been severe in certain populations and areas of the USA, but I was wholly unprepared for the attitudes and beliefs of much of the American public and politicians towards AIDS, especially AIDS prevention. Many Americans continue to believe that AIDS is mainly a disease of gay white mendespite the fact that in the 96 largest metropolitan areas in the USA half all new HIV infections are transmitted through injecting drug use, a quarter through heterosexual intercourse (70-80% of these are in women), and only a quarter through homosexual intercourseand the greatest
Department of Epidemiology and Public Health, Yale University School of Medicine, PO Box 20834, New Haven, CT 06520, USA (Michael H Merson MD)
increase in infections during the past decade has been in African-American and Hispanic populations. Today, AIDS case rates are substantially higher in AfricanAmericans and Hispanics than in whites3 and an estimated 3% of African-American and 2% of Hispanic men in their thirties are living with HIV.4 Few Americans appreciate the global dimensions of the epidemic. There is a common belief that the epidemic started in Africa, but few know the full extent of the problem on that continent-that it is the place where half the 7500 new infections worldwide occur each day, that there are many African cities where one in three pregnant women are now infected, and that in some areas households can spend up to a third of their annual cash income on monthly medical care or a single funeral. More is known about the epidemic in Asia, particularly in Thailand (it will be the country’s leading cause of death by the year 2000), but there is little appreciation of how severely the epidemic has affected India, its recent rapid spread in Vietnam and Cambodia, and its potential for causing even greater havoc in China, the Philippines, and Indonesia. By the end of this decade AIDS could cost Asian economies as much as$52 billion. Although geographically closer, there is seemingly little awareness of the epidemic in Latin America (apart from the erroneous association of AIDS with Haitians), despite rising rates of HIV infection in Honduras, Brazil, and Argentina. When it comes to prevention, school boards and chancellors are fearful of discussing sexual behaviour in the classroom-despite the fact that one in four new HIV infections now occur in people under age 21, television shows most watched by American teenagers contain 2000 references to sexual intercourse and the like yearly, and, nationwide, three-quarters of high-school students have had sexual intercourse by the time of graduation. (In New Haven, Connecticut, 23% of sixth [age 12 years] and 49% of eighth [14 years] grade students admit to having sexual intercourse.) There is no more important group in American society that needs frank information and skills to protect themselves than its youth. The strong evidence that sex education in schools leads to safer sex, including an increase in condom use and a decrease in the number of sexual partners,5 needs to be acted upon and not feared. I am perplexed by the attitude towards condoms. It is not uncommon for people to say that they do not work, despite evidence that when used correctly they are highly efficacious.6 Claims of high breakage rates are misleading because they often fail to take into account the fact that the persons who break condoms are generally repeat breakers. Then there is condom advertising. In conservative Switzerland, which has one of the most effective AIDS prevention programmes in the world, "STOP SIDA" signs with a pink condom sitting inside the letter "0" are everywhere. Since my return to the USA, I
1673
have not seen a condom advertisement on a major television network or a poster promoting a particular brand, despite the fact that the public is generally supportive of condom advertising. At the pharmacy near my office, close to a large university hospital, the condoms are located on the wall behind the pharmacist’s counter, so one can only buy a packet by asking for it. Why have we not made condoms as easy to purchase as other pharmacy products and found acceptable ways to popularise their use? Why have we not successfully portrayed the condom
caring, responsible partner? dismayed by the US approach to HIV prevention injecting drug users. An Institute of Medicine
user as a
I
am
among
concluded that needle and syringe exchange programmes are effective in preventing spread of HIV and do not increase the use of illegal drugs.7 These programmes are more effective when they are implemented through community outreach activities, and
report issued last
autumn
HIV prevalence rates among injecting drug users are below 5%. Data from Connecticut have shown that removing paraphernalia possession laws and prescription requirements for purchase of syringes leads to a large increase in pharmacy purchases and to substantial decreases in street purchase of syringes and needles and in the proportion of injecting drug users who reported
sharing injecting equipment.8 Despite these findings, USA law prohibits use of federal funds to support syringe exchange programmes, and very few states have instituted deregulation laws of the type that now exist in Connecticut; and there are frequent calls for more research to yet again prove the effectiveness of such initiatives. We should support efforts to discourage persons from initiating drug use and limit supplies on our nation’s streets. But, for those who cannot or will not stop injecting illegal drugs, the once-only use of sterile needles and syringes is the safest, most effective way to limit HIV transmission. It is important to realise that such programmes indirectly diminish sexual transmission as well, since most (about 80%) of HIV-infected heterosexual men and women who do not use injecting drugs have been infected through sexual contact with an HIV-infected injecting drug user.2 When it comes to care, much has been written about the great progress we have made in developing drugs for treatment of antiretroviral infection, and there is mounting evidence that it is better to treat HIV infection early in the course of the illness. But few Americans seem to realise the difficulties that many HIV-positive persons have in gaining access to these expensive drugs. There seems to be an all too common scenario. AIDS patients lose their job either because they can no longer work or are fired. In losing their job they lose their health insurance, joining more than 40 million others in the nation. They then spend their remaining assets and savings to purchase the drugs and the care they need. When resources run out, they become eligible for Medicaid. What will happen if federal law changes and Medicaid funds are given through block grants to the states and the entitlement is removed? With our attitudes toward AIDS, many states, now facing fiscal constraints, might find it politically advantageous to provide fewer resources for AIDS patients than are currently given. Furthermore, as more states try to shift to Medicaid-managed care plans, HIV-infected persons have had difficulties with access to experienced providers and needed drugs. It is essential that states formulate these plans to avoid such difficulties.
1674
Why have we not responded? Working at one of the nation’s finest academic institutions, I have sought advice from faculty colleagues in American history, law, and public health as to why our national response to the AIDS epidemic has been so inadequate. I have tried to find out what it is about our past that makes it so difficult for us to deal rationally with an epidemic of a fatal sexually transmitted disease. Two things are apparent. First, as a nation we have never "conquered the Victorian within ourselves",9 preferring to deny our sexual behaviour even when the behaviour presents an untold risk to ourselves and our loved ones. As a consequence, we have turned a public health crisis into a moral commentary equating disease with sin. Second, because HIV infection is contagious and presumed fatal, and AIDS is a disfiguring illness at its end stage that elicits fears about our own mortality, we have stigmatised AIDS and those populations with high rates of HIV infection. It is especially unfortunate that many of those infected have been from populations already stigmatised because of sexual orientation, race, occupation (eg, sex workers), or other behaviour (eg, injecting drug use). The history of syphilis and gonorrhoea in the USA suggests that we could have partly overcome this moral hypocrisy and’ stigmatisation if we could have readily found a cure that successfully treats the disease and prevents HIV transmission. Perhaps we would have responded better if the epidemic had become more established in middle-class America, in the mainly white, heterosexual population that elects most of our political leaders. But, this has not been the case. The HIV/AIDS epidemic has become entrenched in our poor, undeserved African-American and Hispanic populations who are often disenfranchised and have had little political impact at the federal and state levels. Even in areas where they are politically strong, African-American and Hispanic leaders have been reluctant to provide the necessary advocacy. It is the combination of our moral and social attitudes towards AIDS and the inability to bring about the needed response that keeps us at a continued risk of responding inadequately to the epidemic. The one exception has been the gay community, which has accomplished much. Faced with a catastrophic epidemic and profound homophobia during the 1980s, homosexual men mobilised at the grass roots level and literally fought for their survival-for the needed community-based prevention campaigns, for early access to drugs, and for their human rights. They were successful in great part because they were politically powerful voting blocks in cities such as San Francisco and New York, were articulate and highly knowledgeable in the use of the media, and focused their efforts on one issue (the AIDS epidemic). Increasing rates of infection in gay men demonstrate the need for their sustained activism and for support of their prevention efforts over the long haul. What is far from clear, however, is how to successfully transfer these effective strategies to the underserved and less well-educated poorer communities of America who face so many social, economic, and health problems, and who lack political power. The critical question is, can we Americans mount the necessary response? Many of our leading public-health figures and activists have offered blue prints and strategies for such a response. Here are my recommendations, offered as a returning veteran of the epidemic, who wants his country to provide an example for the world.
need to act on the lessons we have learned and progress we have made 15 years into the epidemic. Let us all accept that AIDS prevention is not perfect but it works.."," Arguments about the efficacy of sex education in schools, condom promotion campaigns, and syringe exchange programmes need to be turned into discussions about how best to get these programmes carried out in different cultures and settings. Their implementation usually means involvement of and support to communitybased organisations. It also may require removing structural and environmental barriers or constraints to protective action such as changes in national, state, and local laws and policies. Likewise, we need to remedy the major population and demographic gaps in access to care and standard therapies so that all those infected have an equal chance of living successfully with the virus. Through regulation and legislation we need to assure that all those
First,
we
providing
‘
care,
including managed-care organisations,
offer appropriate and comprehensive care for all HIVinfected individuals. We cannot prevent infection with a vaccine or cure those infected, but we are far from helpless. As a result of our programmatic and scientific advances, we can greatly reduce the risk of infection and offer a longer, higher quality life for all those infected. We also need to step back and ask some questions whose answers might help our response to the epidemic, as well as to other public health problems we might face in the future. For example, we should understand better why our political and legal systems have not responded adequately to this epidemic and why our sexual attitudes derived over generations have been such a barrier to effective policies. We should examine how the media and its messages, activist groups, service organisations, and religious groups have affected our policies and our response. A closer examination of the experience of earlier social and political movements to discern applicable lessons for the refinement of HIV policy would also be useful. In addition, we need to think more about what we can do to remove the stigma associated with HIV infection, for until that happens our response will continue to be inadequate. We should also look much more carefully at the response of others to the epidemic, especially to the countries of northern Europe, where the epidemic is far more under control. Second, we should keep to a minimum needless debates and the sensationalism that detract us from addressing the main barriers to a successful response. Our publications and conference programmes are filled with polemics. For example, we argue over the benefits of targeting prevention efforts at specific populations versus directing them to the general population. In fact, we know that it is highly costeffective to address prevention efforts as early as
populations at highest risk," but it is also provide universal messages to the general to population prevent discrimination against those being to to those who targeted, convey information intermittently practice high risk behaviour, and to build up popular support for the lifting of restrictions on sales of condoms, needles, and syringes. Similarly, we debate the merits of short-term and long-term control measures when both are important. In the short-term we must promote safer sex practices and provide adequate treatment of sexually transmitted diseases;12 in the longterm we need to educate and employ women so that they will be able to possible
essential
to
to
enhance their economic and social status and place themselves in situations of risk.
not
have
to
The media also distracts us. My impression is that many more Americans know about the Florida dentist that infected six of his patients (the only such instance worldwide we know about),13 the AIDS patient who received bone marrow from a baboon, or the recent disqualification of a boxer (Tommy Morrison) because he was found to be HIV-infected, than know the facts about HIV prevention. It is not that some of these events are not interesting or worthy of some discussion, it is rather that, by demanding so much of our attention, they help contribute to our denial of the seriousness of the problem and our unwillingness to adequately confront the issues that need greatest attention. I think it would be useful for the media industry to take a fresh look at the impact it is having on our national response. Third, we need to make rational policy decisions based on sound public-health principles and not on moral grounds. Such decisions will continue to be difficult, as has been evident, for example, in the recent debates about HIV testing. Despite overwhelming epidemiological evidence to the contrary, we remain one of the few nations that requires those seeking a visa to visit the USA to declare their HIV status. Efforts to pass federal legislation requiring that HIV-positive persons be discharged from the military, so far unsuccessful, continue. There are calls for mandatory testing of pregnant women, since there is now effective therapy for reducing perinatal transmission, and of newborn babies as a means of assuring optimum care for those born infected. Although the weight of evidence favours voluntary testing in both mothers and newborn babies, this can only be achieved by providing greater access to health services for pregnant women. Home kits have recently become available for obtaining blood specimens on filter paper that can be sent to a registered laboratory for measurement of HIV-antibody. If used correctly, they may help to facilitate confidential testing and thus lead to early treatment. 14 Under development are kits that will rapidly detect HIV-antibody in saliva or urine, similar to those for detecting pregnancy. One can imagine them used inappropriately in hospitals, clinics, prisons, places of employment, and immigration offices. In view of the possible social and psychological implications, a decision as to whether or not to make these kits commercially available for over-the-counter sales demands sound research and rational analysis. Fourth, our research agenda must be strengthened and supported. Recent Congressional rhetoric about the greater importance of cardiovascular and cancer research compared with AIDS research has been but another example of a debate over morality. We are in the midst of an epidemic whose end is nowhere in sight that affects those in the most productive years of life. Many of our recent gains in medicine and public health have been based on the results of biomedical and behavioural research supported by the federal government. The same is and will hold true for AIDS. The Office of AIDS Research, whose task it is to coordinate AIDS research at the National Institutes of Health, deserves full support. The recent evaluation of this office has resulted in a thoughtful research agenda that, under its leadership, offers the best hope for even more effective therapy, a preventive vaccine, a vaginal virucide for women, and better social and behavioural approaches to prevention and to dealing with the consequences of infection among those infected and affected. We need more investigator-initiated research, especially in the
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laboratory, but
the
require centres of excellence than can ensure a multidisciplinary approach towards our basic and intervention-oriented, psychosocial, at
same
time
we
and behavioural research. Our behavioural intervention research should focus particularly on those populations most vulnerable to HIV infection and in urgent need of preventive interventions, including gay youth and young adults (especially AfricanAmerican and Hispanic people); disenfranchised and
impoverished women, heterosexual men (again, especially African-American and Hispanic); inner-city youth; and out of treatment substance abusers and their sexual partners. This research should not only be targeted at the individual level, but also should examine the impact of broader interventions (eg, among drug-using or sexual networks or community-wide groups) that change behavioural norms and, as a consequence, affect individual behaviour. While appreciating the sensitivities involved, we should also undertake studies to learn more about the determinants of risk behaviour among HIVinfected persons and test interventions to reduce their behaviours that place others at risk. It is likewise essential to expand efforts to learn more about the impact of drug and alcohol use on the sexual transmission of HIV. Lastly, we need to restructure our national response and have the courage to do what is right to save lives. Much has been written about the need for our federal government to produce and implement a national plan that would adequately respond to the epidemic.1,15 So far this has not happened. In fact, social and political forces in the USA are, if anything, pushing our national response backwards, which can only result in more sickness and death; this is tragic since we have the resources to do what is needed. We must find a way to turn this around without drawing so-called liberal-conservative lines. To do so we must first and foremost learn to live with the virus and the disease in a spirit of social tolerance and understanding. In this year of the presidential election I can think of no more important public health issue about which our candidates should demonstrate bipartisan support. How courageous it would be if they pledged to re-examine the sound recommendations of the now dissolved national AIDS Commission and prepare and carry out a comprehensive AIDS prevention programme that involved governmental and non-governmental structures and the private sector, no matter what the political implications. Hopefully, Americans are now ready as a nation for frank talk and bold action. Concurrently, affected communities around the country could do more. The gay community, AfricanAmerican and Hispanic communities, and those who care about women, children, and the poor could all demand an end to the business-as-usual approach to prevention and a rational health care policy for those infected. Internationally, there is also much to be done under the new United Nations Programme on AIDS (UNAIDS)
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which began its work this year under the leadership of Dr Peter Piot. This programme, which has equal and joint ownership of six UN agencies, including WHO, is the first of its kind in the UN system. It is a test as to whether the UN agencies can work together around a single problem that threatens the social fabric, economic development, and political stability of many nations. The USA will hopefully provide the necessary financial and political support to make it a success. The AIDS epidemic has presented us with perhaps the greatest public health and social challenge of this century and the next. Today, the number of new infections in the USA is about equal to that of persons dying; this must not continue. But it is not too late-if we base our public AIDS policy on scientific knowledge data, if we apply sound public health principles and not moral judgments to our efforts, and if the leaders in American society have the political courage to do what is needed. I thank Tom Coates and Peter
Salovey for their helpful
comments.
References 1 2
3
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9
10 11 12
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Francis DP. Toward a comprehensive HIV prevention programme for the CDC and the nation. JAMA 1992; 268: 1444-47. Holmberg SD. The estimated prevalence and incidence of HIV in 96 large US metropolitan areas in the United States. Am J Publ Hlth 1996; 86: 642-54. Centers for Disease Control and Prevention. First 500,000 AIDS cases, United States. MMWR (Morbid Mortal Wkly Rep) 1995; 44: 849-53. Rosenberg PS. Scope for the AIDS epidemic in the United States. Science 1995; 270: 1372-75. Kirby D, Short L, Collins J, et al. School-based programs to reduce sexual risk behaviors: a review of effectiveness. Publ Hlth Rep 1994; 109: 339-60. de Vincenzi I. European Study Group on Heterosexual Transmission of HIV. A longitudinal study of human immunodeficiency virus transmission by heterosexual partners. N Engl J Med 1994; 331: 341-46. Normand J, Vlabov D, Moses LE. Preventing HIV transmission: the role of sterile needles and bleach. Panel of exchange and bleach distribution programs. Commission on Behavioural and Social Sciences and Education, National Research Council and Institute of Medicine. Washington DC: National Academy Press, 1995. Groseclose SL, Weinstein B, Jones TS, et al. Impact of increased legal access to needles and syringes on practices of injecting drug users and police officers: Connecticut, 1992-1993. J Acquir Immun Def Syndr 1995; 10: 82-89. Brandt AM. No magic bullet: a social history of veneral disease in the United States since 1980 (expanded ed). New York, Oxford University Press, 1987. Office of Technology Assessment. The effectiveness of AIDS prevention efforts. Washington, DC: US Congress, September, 1995. World Development Report 1993. Investing in health. Oxford: Oxford University Press, 1993: 99-107. Grosskurth H, Mosha F, Todd J, et al. Impact of improved treatment of sexually transmitted diseases on HIV infection in rural Tanzania: randomized controlled trial. Lancet 1995; 346: 530-46. Centers for Disease Control and Prevention. Investigations of persons treated by HIV-infected health care workers. MMWR (Morbid Mortal
Wkly Rep) 1993; 42: 329-31; 337. Phillps KA, Flatt SJ, Morrison KR, et al. Potential use of home HIV testing. N Engl J Med 1995; 332: 1308-10. Stryker J, Coates TJ, De Carlo P, et al. Prevention of HIV infection: looking back, looking ahead. JAMA 1995; 273: 1143-48.