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The HIV/AIDS pandemic is probably the defining historical event of the late twentieth century and threatens to further define our future [see Figure P-1]. The first cases of gay men with pneumocystis pneumonia, an unusual opportunistic infection, were reported in the United States in June 1981.[1] By 1982 the Centers for Disease Control and Prevention (CDC) established the term "Acquired Immune Deficiency Syndrome" (AIDS),[2] and within two years Luc Montagnier and Robert Gallo isolated the human retrovirus that causes AIDS;[3] the retrovirus would later be named the Human Immunodeficiency Virus (HIV). The following year the Food and Drug Administration (FDA) licensed the first test to identify antibodies to HIV, and blood banks began screening the nation's blood supply.[4]

In the United States, more than 800,000 cases of AIDS have been reported since the beginning of the epidemic and a half a million people have died of AIDS.[5] AIDS consistently has been one of the leading causes of death for persons aged twenty-five to forty-four. An estimated 900,000 Americans are living with HIV/AIDS,[6] and one-fourth of these people do not know they are infected.[7] Although public health officials predicted a reduction, HIV incidence rose between 1999 and 2001, especially among vulnerable populations.[8]

Globally, the picture is even more grim. Three-quarters of all countries report HIV/AIDS as their most significant demographic issue.[9] More than 20 million people have already died from AIDS and an estimated 42 million people are currently infected with HIV.[10] HIV/AIDS has been reported in all regions of the world, but the vast majority of people (95 percent) live in resource-poor countries, particularly within Sub-Saharan Africa. In less than ten years, many countries in southern Africa will see life expectancies fall to near thirty years of age, levels not experienced since the end of the nineteenth century.[11] Without AIDS, life expectancy in Botswana would be seventy-four years in 2010; with AIDS, it is projected to be twenty-seven.[12] Worldwide, nine out of ten persons living with HIV are unaware that they are infected.[13] AIDS is the leading cause of death in Africa and the fourth leading cause of death globally. Half of all adults living with HIV/AIDS worldwide are women,[14] who are more vulnerable to infection due to poverty, inadequate access to health care, and discrimination. Over 13 million children have lost their mothers or both parents to AIDS.[15] The media has vividly portrayed the tragic images of people living with HIV/AIDS, once young and vibrant, then weakened, desperately ill, and wasting away.

The epidemic not only causes illness and death, but also influences social norms. AIDS exposes the social fault lines of fear, hate, and discrimination. New phrases entered the English language such as "gay-related immune deficiency" (GRID) or "gay cancer" and "AIDS phobia," closely related to "homophobia."[16] AIDS fueled animus not only against persons living with the disease, but also against groups disproportionately affected—gays, injection drug users, and sex workers.

At the same time, the epidemic has inspired pride and a sense of purpose. Never before had the gay community come together so openly and with such determination to expose the evils of stigma, discrimination, and underfunded research. Never before had vulnerable communities been so politically active and service oriented. As early as 1982, the San Francisco AIDS Foundation and the Shanti Project developed a model of care emphasizing home- and community-based services. In 1983 the first AIDS Candlelight Memorial was held. Within two decades, four hundred cities and towns worldwide would hold similar memorials. In 1986 the first panel of the AIDS Memorial Quilt was created. New advocacy (e.g., ACT UP, AIDS Action Council, National Association of People with AIDS, National Minority AIDS Council), service (e.g., Gay Men's Health Crisis, San Francisco AIDS Foundation, AIDS Project Los Angeles, Whitman Walker Clinic District of Columbia), and funding (e.g., American Foundation for AIDS Research [AmFAR]) organizations emerged, while others experienced a resurgence (e.g., Lambda Legal Defense and Education Fund).

Vast social changes that took place in the late twentieth century led inexorably to legal changes. Legislators at the federal, state, and local levels enacted a spate of new laws. Some laws reflected society's worst instincts such as exclusion of HIV-infected immigrants, segregation of prisoners, and criminal sanctions against persons who knowingly transmit HIV infection. Other laws were protective, such as those requiring informed consent, privacy, and nondiscrimination. At the same time, the epidemic provoked litigation on almost every conceivable issue, including constitutional rights, social institutions, and personal and professional obligations.[17]

The AIDS epidemic has reached deeply into the political sphere. At times, politicians signaled their ignorance and antipathy through silence. The persistent refusal to speak about AIDS from the highest levels of government was soul-destroying for those fighting the disease. Other politicians displayed their irrational fears and biases through calls for shame and punishment of persons living with HIV/AIDS. A few lawmakers exemplified political strength by passing statutes such as the Ryan White CARE Act in 1990 (most recently reauthorized in 2000) to ensure an HIV/AIDS care infrastructure.

The AIDS epidemic also has had a detrimental effect on the economy. Many industries have lost workers in their most skilled and productive years of life. As the number of persons with the disease rose and the available treatment options expanded, the costs of treatment escalated. The nation had to devote resources to research and development, counseling, education, treatment, and services.

Perhaps most importantly, the United States has had to grapple with its role in the world as a political, military, and economic leader. Questions of humanitarian aid, patents for AIDS medications, international trade, and research ethics have become salient. In 2000 the U.S. government declared AIDS a national security threat.[18] However, it has failed to devote sufficient resources to poor countries, encourage the pharmaceutical sector to make drugs accessible, or work cooperatively with international agencies and nongovernmental organizations to reduce the global burden of the pandemic. For example, at a United Nations population conference in Bangkok in December 2002, the American delegation tried to block an endorsement of condom use to prevent HIV/AIDS. The consequences of this behavior in the international arena go beyond resentment and ridicule. Girls and young women often contract HIV because they are pressured into sex by older men. To deny them access to condoms and counseling about how to negotiate safe sex is a deadly strategy.[19]

In January 2003, in his State of the Union address, President George W. Bush announced $15 billion over the next five years to fight AIDS in twelve countries in Africa as well as Haiti and Guyana.[20] The declaration was met with elation, hope, and, given the administration's past policies, skepticism.[21] Time will tell if the promised funding is spent wisely in ways that will make a true impact on this global tragedy.

Three Phases of the HIV/AIDS Epidemic

The history of the AIDS epidemic in the United States can be roughly divided into three phases: Denial, Blame, and Punishment, 1981-87; Engagement and Mobilization, 1987-97; and Complacency, Injustice, and Unfulfilled Expectations (1997-present).

Phase One: Denial, Blame, and Punishment, 1981-1987

Phase One, from 1981 to approximately 1987, was a time of denial, blame, and punishment.[22] Governments exhibited little political will to confront the HIV epidemic, often maintaining a deafening silence or even denying the truth about the devastation of AIDS. President Ronald Reagan did not mention the word "AIDS" in public until 1986. Later that year, Attorney General Edwin Meese issued an odious opinion asserting that the federal Rehabilitation Act of 1973 did not prohibit discrimination based on a person's irrational fear of contagion.[23] Richard Thornburgh formally revoked the opinion once he took over the Justice Department.[24]

This was also a time when people living with HIV/AIDS were divided into the "innocent" and the "guilty"—the "included" and the "other." Persons who contracted HIV perinatally or through a blood transfusion were thought to be blameless and deserving of sympathy. But those who contracted HIV through sex or sharing drug-injection equipment were reviled and censured for their illness. Many were excluded from jobs, denied insurance, and shunned.

The mid-1980s were particularly explosive years in the HIV epidemic. Senator Jesse Helms, of North Carolina, a noted antagonist of gay rights causes and AIDS funding, sponsored a bill that symbolized the antipathy of Congress. The Helms Amendment banned the use of federal funds for AIDS education materials that "promote or encourage, directly, homosexual or heterosexual activity"—often referred to as the "no promo homo" policy.[25] The Department of Defense began screening all recruits, rejecting those who were infected with HIV. The State Department initiated HIV testing of immigrants and excluded HIV-infected persons from the United States because they had a "dangerous contagious disease." In protest of this immigration policy, the global AIDS community boycotted the Sixth International Conference on AIDS in San Francisco in 1990 and moved the Eighth International Conference on AIDS from Boston to Amsterdam in 1992.

From a social perspective, the mid-1980s were just as unsettling. Hollywood actor Rock Hudson announced that he had AIDS and then died amid expressions of shock and recrimination. Ryan White, a young boy from Indiana, was excluded from school and went on to become a spokesperson for the rights and dignity of persons living with HIV/AIDS.[26] Ricky Ray was also barred from his school in Florida, and his family's home was later burned. The messages of this era were not hopeful or uplifting, but rather bitter and divisory. It was a time when persons living with HIV/AIDS had little hope of an effective treatment and experienced stigma, rejection, and discrimination.

Phase Two: Engagement and Mobilization, 1987-1997

Phase Two, from approximately 1987 to 1997, was a time of engagement and mobilization. Many different groups (e.g., gays, African Americans, and Latinos) came together to advocate for education and treatment in their communities. Activists won battles to increase research budgets and expedite access to innovative new treatments. Communities embraced harm reduction strategies such as condom distribution and needle exchanges. Activists and scholars proclaimed that persons living with AIDS were entitled to human rights—not only political and civil, but also economic, cultural, and social rights.

Due in large part to the pressure placed by advocacy organizations, federal health agencies became particularly active during this period. The FDA, National Institutes of Health (NIH), and CDC were enterprising and innovative. In 1987-88 the FDA moved rapidly to make new medications available to treat persons living with HIV/AIDS. The agency approved the first antiretroviral agent for AIDS (zidovudine, or azidothymidine [AZT]), created a new class of experimental drugs (Treatment Investigational New Drugs or INDs), accelerated drug approval for innovative drugs, and allowed the importation of unapproved drugs for persons with life-threatening illnesses.[27] During the same period, the FDA also sanctioned the first human testing of a candidate vaccine against HIV. In the next decade the FDA would approve the use of AZT for pediatric AIDS (1990), an oral HIV test (1994), a protease inhibitor (saquinavir) for use in combination with other HIV drugs (highly active antiretroviral therapy or HAART) (1995), a viral load test (1996), an HIV urine test (1996), and a home blood sample collection kit for anonymous testing (1996).[28]

In 1987 NIH created the Office of AIDS Research (OAR), restructured its AIDS research program, and established the AIDS Clinical Trials Group (ACTG) Study 076. In 1989 NIH (in collaboration with the FDA) endorsed a parallel track policy, giving persons who do not qualify for clinical trials access to experimental treatments. By 1994 ACTG 076 had demonstrated that a regimen of antiretroviral medication given to women and newborns was highly effective in preventing perinatal transmission.[29] That same year, NIH issued guidelines requiring applicants for grants to address "the appropriate inclusion of women and minorities."

The CDC's ground-breaking workplace safety rules issued in 1985 were important in quelling mounting fear about transmission of HIV infection.[30] Thereafter, the agency issued numerous guidelines based on strong epidemiologic evidence, such as recommendations on counseling, testing, and partner notification.[31] In 1987 the CDC launched its first AIDS public service announcements, America Responds to AIDS, and held its first National Conference on HIV and Communities of Color. The WHO, in collaboration with the CDC, declared the first World AIDS Day on December 1, 1988.

Phase Two of the HIV/AIDS epidemic produced stunning successes: new antiretroviral treatments prolonged the health and lives of persons living with the infection, the ACTG 076 regimen dramatically reduced the rate of mother-to-child transmission, and AIDS awareness campaigns produced steep declines in new infections in the gay community. Grassroots pressure finally led to political engagement with the profound, unfolding tragedy of AIDS. President Reagan appointed the Presidential Commission on AIDS in 1987 (chaired by Navy Admiral James Watkins),[32] and Congress created the National Commission on AIDS in 1989.[33] President Bill Clinton established the White House Office of National AIDS Policy in 1993 and the Presidential Advisory Council on HIV/AIDS in 1995.[34]

Major new legislation was enacted to protect the rights of persons living with HIV/AIDS and to provide prevention and care services. The Health Omnibus Programs Extension (HOPE) Act of 1988 authorized the use of federal funds for AIDS prevention, education, and testing (although its programs were never implemented).[35] The Ryan White Comprehensive AIDS Resources Emergency Act of 1990 (CARE) provided federal funds for community-based care and treatment services.[36] The Americans with Disabilities Act (ADA) of 1990 prohibited discrimination against persons with disabilities,[37] and in 1998 the Supreme Court in Bragdon v. Abbott held that the ADA applied to persons living with asymptomatic HIV infection.[38] The Housing Opportunities for People with AIDS (HOPWA) Act of 1991 provided funding to states and localities to develop long-term strategies to meet the housing needs of persons living with HIV/AIDS.[39] By the end of this era of engagement and mobilization, AIDS-related deaths in the United States had declined by more than 40 percent from 1996 to 1997.[40]

Phase Three: Complacency, Injustice, and Unfulfilled Expectations, 1997-Present

Phase Three, the current era, has been characterized by complacency, continuing injustice, and a sense of unfulfilled expectations. Certainly, there have been encouraging signs of continued progress. Congress enacted the Ricky Ray Hemophilia Relief Fund Act of 1998 to pay hemophiliacs infected through unscreened blood-clotting agents between 1982 and 1987.[41] The same year, Congress approved funding for the Minority HIV/AIDS Initiative. In 2000 federal lawmakers expanded their global effort by reauthorizing CARE and passing the Global AIDS and Tuberculosis Relief Act.[42] In 2003 the CDC launched a new HIV prevention initiative.[43] Perhaps most importantly, as noted above, President Bush promised $15 billion from 2003 to 2008 to fight AIDS in Africa and the Caribbean.

To many people, new discoveries in prevention and treatment had signaled the end of the AIDS epidemic. However, these forecasts were sadly wrong. Many cities such as San Francisco began to experience a resurgence of new infections among young gay men,[44] populations of drug users became saturated with infection and disease,[45] and the promise of medicine, especially HAART, appeared premature and overblown. The miracle treatments were anything but cures. Many people experienced serious side effects, their viral loads increased, and their health deteriorated. The number of drug-resistant strains of HIV surged, threatening to turn back the clock on many therapeutic gains of the 1990s.[46] At the same time, the promise of a safe, effective vaccine does not appear likely in the near future. In February 2003 results of the first large-scale human trial of an AIDS vaccine failed to demonstrate that the vaccine was effective in preventing HIV infection.[47]

Ominously, the demographic patterns of HIV began to shift. What was once a disease of middle-class gay white males increasingly became a disease affecting African Americans, Latinos, the poor, and people living in inner cities. Persons of poverty and color began to bear a vastly disproportionate burden. The rates of infection among women were rising, especially among African Americans and Latinas of childbearing age. Even among men who have sex with men, incidence in African Americans and Latinos exceeded incidence in whites.[48] These data led African American leaders and the Congressional Black Caucus to declare a national public health emergency for minority communities in 1998.

The injustices have been even more apparent outside of the United States. Given its emergence just over twenty years ago, few would have predicted the devastation of the HIV/AIDS pandemic. Many countries in Sub-Saharan Africa have HIV prevalence rates approaching 30 percent.[49] Seven of these countries have life expectancies below forty years of age. By the year 2010, five countries will experience negative population growth.[50] Although the least developed countries are burdened with illness and death, they have been left largely to fend for themselves. Industrialized nations have turned a blind eye to the suffering in the southern hemisphere, and AIDS has become a pandemic of "the other"—mostly black, poor, and forgotten.

The startling advances in treatment in North America and Europe have not been achieved in most of Africa and Asia. Tragically, cost-effective and relatively simple interventions to prevent HIV transmission such as health education and condom use have not been implemented in many poor countries. Pregnant women and infants often do not receive treatment that would dramatically reduce the risk of perinatal transmission. Less than 1 percent of persons living with HIV/AIDS in developing countries receive antiretroviral therapy.[51] More than ever, the AIDS pandemic has created two worlds—one with relatively low burdens of disease and sophisticated treatments and the other with staggering burdens and paltry health care resources. It was not until 2000 that the first international AIDS conference was held in a developing country. The Thirteenth International AIDS Conference in Durban, South Africa, took place under the slogan "Break the Silence."

In response to overwhelming global health problems, the United Nations in January 2002 established a General Fund to Fight AIDS, Tuberculosis, and Malaria.[52] Yet pledges from industrial nations were far below United Nations expectations or Third World needs. President George Bush unveiled an International Mother and Child HIV Prevention Initiative in June 2002 but had actually cut bipartisan anti-AIDS funding provided by Congress.[53] President Bush's promise of $15 billion for global AIDS funding in 2003 could signal American willingness to finally make a difference. However, critics remain skeptical about the way the funds will be spent and the strings that may be attached.[54] It remains to be seen whether in the third decade of the HIV/AIDS pandemic, the world will respond to continue to tolerate injustice.

Organization of the Book

This book examines the social, legal, political, and ethical controversies surrounding AIDS in the early twenty-first century. I originally set out to provide a collection of essays about AIDS written over the span of two decades. These essays were originally published in legal, medical, and policy journals, as well as in books and reports on the subject. However, AIDS is so complex and dynamic that essays written years ago could not convey the modern dilemmas in politics, policy, and law. Consequently, I have rewritten and updated the chapters, providing a detailed descriptive and analytic account of the field in the early twenty-first century.

The book is divided into five parts: I. AIDS in the Courtroom; II. Rights and Dignity; III. Policy, Politics, and Ethics; IV. Special Populations; and V. AIDS in the world.

Part I. AIDS in the Courtroom

Part I gives an overview of AIDS policy, politics, and law and presents data from the AIDS Litigation Project (ALP). Chapter 1 places the AIDS epidemic in historical perspective, examines the positions of the major players, assesses contemporary policies, and predicts future directions. Chapters 2 and 3 describe the findings of the ALP, which tracked all significant court cases involving HIV/AIDS from the beginning of the epidemic through the 1990s. Chapter 2 considers the social impact of AIDS—the effect of litigation on social institutions, constitutional law, and interpersonal relationships. Chapter 3 discusses the role of litigation relating to personal privacy and discrimination. Taken together, the latter two chapters reveal the deep controversies surrounding HIV/AIDS that have played out in the nation's courtrooms.

Part II. Rights and Dignity

Part II begins a more in-depth examination of national and international law to safeguard the rights of persons living with HIV/AIDS. Chapter 4 looks at the role of international human rights in the AIDS pandemic, including civil, political, social, and economic rights. Chapter 5 considers health information privacy; it explores the conflict between confidentiality and privacy on the one hand and the right to know and the duty to warn on the other. In examining discrimination against persons living with HIV/AIDS, Chapter 6 reviews modern legislation and case law, notably the salient role of the Americans with Disabilities Act and HIV-specific antidiscrimination law at the state and local levels.

Part III. Policy, Politics, and Ethics

Part III covers the most contentious debates of the HIV/AIDS epidemic in the United States. This part seeks to use legal and ethical analyses to understand the politics and controversies that have permeated AIDS discourse. Chapter 7 examines proposals and policies for HIV testing and screening. It provides an analytic framework for evaluating testing and screening that pays close attention to science and public health, as well as ethics and human rights. Chapter 8 considers the thorny issue of HIV reporting. Reporting cases of CDC-defined AIDS to state health departments is routine and widely accepted, but reporting cases of HIV infection by name is politically charged. This chapter explains the importance of HIV surveillance and examines alternatives to named reporting, including the use of unique identifiers (UIs).

Chapter 9 discusses the many variations of partner notification, including classic governmental contact tracing programs, the duty of health care professionals to warn persons at risk, and the responsibility of persons infected with HIV to inform their partners. Chapter 10 deals with civil and criminal confinement. Given the fact that HIV cannot be transmitted casually, one might expect that civil and criminal confinement would not be seriously discussed. Yet politicians and the media often have argued for isolation or quarantine, and legislatures have enacted HIV-specific criminal laws. This chapter offers a critique of civil and criminal confinement of persons living with HIV/AIDS.

Part IV. Special Populations

Part IV covers the rights and obligations of groups at heightened risk or identified as having special responsibilities. Chapter 11 looks at the emotive issue of perpetrators and survivors of sexual assault. Survivors of sexual assault frequently fear contracting HIV infection. Although the risk is usually low, testing the accused as well as counseling and prophylaxis for the victim have become important and highly charged subjects. Chapter 12 is concerned with the rights and duties of HIV-infected health care workers (HCWs). In 1990 Kimberly Bergalis contracted HIV infection from her dentist, sparking major public debate. I was actively involved with the CDC at that time, and the ensuing CDC guidelines resulted in the exclusion of many HIV-infected HCWs from practicing exposure-prone procedures. More recent data have now shown the risk of HCW-to-patient transmission to be exceedingly low. This chapter presents my new position that HIV-infected HCWs should be permitted to practice as long as they can do so competently and safely.

Chapter 13 turns to perinatal transmission of HIV. Since the results of ACTG 076 were published in 1994, there has been extensive debate over the screening and treatment of pregnant women and newborns. This chapter examines this debate in light of Institute of Medicine (IOM) and CDC recommendations to reduce the risk of mother-to-infant transmission. Chapter 14 focuses on the interconnected epidemics of HIV/AIDS and drug dependency. Sharing drug-injection equipment poses a serious risk of HIV infection, leading many public health professionals to propose increased access to sterile needles and syringes. At the same time, many politicians have argued that needle exchanges and repeal of laws that criminalize possession of needles encourage drug use. This chapter shows why harm-reduction policies significantly reduce the risk of HIV/AIDS and do not increase drug use.

Part V. AIDS in the World

Part V reviews the global devastation of the HIV/AIDS pandemic. Chapter 15 discusses the U.S. policy of screening and exclusion of travelers and immigrants, one that activists have vigorously opposed to the point of boycotting AIDS conferences held in the United States. The chapter demonstrates why this American policy is ill-conceived from a public health and human rights perspective. Chapter 16, on the global HIV/AIDS pandemic, shows the enormous scope and unfair distribution of disease around the world. It also examines the central issues of HIV/AIDS in the world: the absence of political leadership, an international trade system that militates against access to affordable treatment in poor countries, and the ethics of international collaborative research. Finally, Chapter 17 offers reflections on the AIDS pandemic past, present, and future, focusing on AIDS law, policy, and politics in the United States and beyond.

The AIDS pandemic has reached deeply into all major spheres of modern life—public health, medicine, law, economics, and politics. The pandemic has transformed society and restructured ethical values. This book provides an account of the major themes of the pandemic during the last two decades and analyzes contemporary and future policy.

Working on AIDS with Friends and Partners: Acknowledging the Leaders

Having spent more than a decade in the United Kingdom as the head of the British Civil Liberties Union (National Council of Civil Liberties), as legal director of the National Association for Mental Health, and as a Fellow at Oxford University, I returned to the United States in the mid-1980s to work with William J. Curran at the Harvard School of Public Health. The late Professor Curran, who wrote an acclaimed series of columns on legal medicine for the New England Journal of Medicine, was a mentor.

During those early years, Harvard University was already gearing up to study the HIV/AIDS epidemic in America and globally. Harvey Fineberg, then dean of the School of Public Health, encouraged the faculty to work cooperatively on AIDS; Max Essex, an internationally renowned laboratory researcher, helped form the Harvard AIDS Institute (as of this writing directed by Richard Marlink); and prominent clinicians such as Jerry Groopman, Martin Hirsch, and Kenneth H. Mayer devoted their careers to serving persons living with HIV/AIDS. I had the privilege of working closely with young scholars and valued friends such as Allan Brandt and Paul Cleary at Harvard and Ronald Bayer at Columbia, all of whom were beginning their brilliant careers in AIDS and public policy. Influenced by these and many other scholars, I began a period of sustained engagement in the world of AIDS.

When I arrived at Harvard in 1985, Secretary of Health and Human Services Margaret Heckler asked William Curran, Mary Clark, and me to write a report on AIDS law and policy in the United States.[55] That report predicted an explosion in legal activity that would unfold during the next decade, beginning with the first AIDS discrimination law enacted in Los Angeles. A study of global AIDS legislation for the World Health Organization (WHO) in 1990 revealed a similar pattern of legal and regulatory policy on AIDS in most regions of the world.[56] By 1992, Lane Porter and I had edited a volume on international law and AIDS for the American Bar Association (ABA).[57]

Work in the area of global AIDS policies required travel to populous countries where HIV/AIDS was newly emerging. In 1996 a delegation of experts visited Beijing, China, at the invitation of the minister of justice. The following year the prime minister and chief justice of India hosted a global AIDS conference in Delhi. During these visits we witnessed the poverty and lack of education that would lead to an explosive growth of the pandemic in Asia. In India, a working group led by Michael Kirby (the admired Australian Supreme Court justice and global leader on AIDS) drafted the "Delhi Declaration" on the rights of persons living with HIV/AIDS.

The year after I arrived at Harvard, I visited my close friend Sev Fluss, then head of health legislation at the WHO in Geneva. He told me that a young American, Jonathan Mann, had just been appointed to run WHO's Global Programme on AIDS (GPA). When I met Dr. Mann in the summer of 1986, GPA was comprised of only him and a Swiss secretary. The Global Programme on AIDS eventually turned into the largest program in WHO's history.

During the rise of the GPA, Mann's strategy for curtailing the AIDS pandemic transformed. At first, he applied conventional ideas of education, screening, and partner notification. Later, he felt that persons at risk of HIV should have the means to protect themselves by possession of condoms and sterile injection equipment. Finally, he recognized that public health and human rights were inseparable ideas. People could not avoid risk without civil, political, social, and economic rights. Mann often illustrated this point by explaining that vulnerable women could not remain healthy if they were economically dependent on, or in fear of, their sex or needle-sharing partners.

In 1990, after a bitter dispute with then director general of WHO, Dr. Hiroshi Nakajima, Jonathan left the GPA to join the faculty at the Harvard School of Public Health. In 1993 he became the founding chair of Harvard's François-Xavier Bagnoud Center for Health and Human Rights, where he established himself as one of the great figures in health and human rights in the twentieth century. I had the great fortune to teach the first class on health and human rights at Harvard with Dr. Mann and to collaborate with him on early papers on the intersection of these two great fields.[58] On September 2, 1998, after leaving Harvard, he and his wife, prominent AIDS researcher Mary Lou Clements-Mann, died in the Swiss Air 111 disaster on their way to Geneva. Jonathan was survived by his mother, Ida Mann, his first wife Marie-Paule, and his children Naomi, Lydia, and Aaron. In September 2001 Scott Burris, Zita Lazzarini, and I chaired an international conference on health and human rights in Philadelphia dedicated to the memory of Jonathan Mann.

The Harvard AIDS Institute provided an outlet for collaboration within the university. William Curran and I drafted the Harvard Model AIDS Legislation Project from 1988 to 1990.[59] That project proposed legal reforms on privacy and discrimination. Harvard legal scholars Martha Field and Kathleen Sullivan (as of this writing dean of Stanford Law School) joined in the model law project. I also chaired the track on social science, policy, and law for the Eighth International Conference on AIDS, held in Amsterdam in 1992, which was the first international AIDS conference to focus on social science and law.

From 1990 to 1996 I worked on the AIDS Litigation Project with Kathleen Flaherty, Zita Lazzarini, Lane Porter, and Hazel Sandomire. This project was originally funded by the National AIDS Program Office, of the Department of Health and Human Services (HHS),[60] led by James Allen, and then by the Henry J. Kaiser Family Foundation,[61] led by Drew E. Altman. The ALP summarized the case law, offered an analysis, and forecast the trends in AIDS law and policy.[62] The ALP revealed the fundamental misunderstandings of judges and legislators about HIV, its methods of transmission, and the most effective and humane policies. As a result, colleagues and I engaged in a series of workshops to train leaders in the judicial and legislative branches. This training was done in collaboration with the National Judicial College, the State Justice Institute, and the Agency for Healthcare Research and Quality.

The training mission expanded to include AIDS and human rights, and audiences grew to comprise WHO, CDC, and the U.S. Agency for International Development (USAID).[63] The human rights training at USAID became a model. This training began in 1997 with Jonathan Mann and continued in 2000 with Stephen Marks and Sofia Gruskin of the François-Xavier Bagnoud Center for Health and Human Rights. Clif Cortez and Rebecca Cook from the University of Toronto also participated in the USAID training.

I have been fortunate to work with the major public health agencies in the United States and globally. These organizations frequently hold consultations and advisory meetings to develop AIDS policies. I served in several capacities for the CDC under able directors such as William Roper, David Satcher, Jeffrey P. Koplan, David Fleming, and Julie Gerberding. I served as a member of the CDC National Advisory Committee on HIV and STD (Sexually Transmitted Disease) Prevention, chaired at various times by Kristine Gebbie, Mark Maggenheim, and Robert E. Fullilove. I engaged in numerous policy-making projects with the CDC, particularly the National Center for HIV, STD, and TB (Tuberculosis) Prevention, with leading public health professionals such as James Curran, Helene Gayle, Kevin DeCock, and Ronald O. Valdiserri. I had the opportunity to work on stimulating projects including research ethics (James Buehler, Marjorie Spears, and Dixie Snyder), the Model State Public Health Privacy Act (Patricia Fleming, David R. Holtgrave, and John W. Ward),[64] partner notification (Gary R. West),[65] HIV-infected health care workers (David Bell and Robert Janssen), and injection drug users (T. Stephen Jones).[66] Perhaps most of all, I worked closely with the Office of the General Counsel (Gene Matthews and Verla Neslund) and the public health law program (Edward L. Baker, Richard A. Goodman, Martha Katz, and Anthony Moulton). Several experts at CDC reviewed this book, including Patricia Fleming, Mary Glenn Fowler, Ida Onorato, and Thomas Peterman. I prepared several policy reviews for NIH, including a report on law and ethics for international collaborative HIV research.[67] I currently serve on the Office of AIDS Research Advisory Council of NIH. I am particularly grateful for the opportunity to work for many years with the indefatigable head of the National Institute of Allergy and Infectious Diseases, Anthony S. Fauci.

I have been privileged to serve on several boards and advisory committees for the Joint United Nations Programme on AIDS (previously WHO's Global Programme on AIDS), working with Peter Piot, Daniel Tarantola, Susan Timberlake, and Helen Wachirs. In 1997 an expert committee drafted the United Nations Guidelines on HIV/AIDS and Human Rights (E/CN.4/1997/37) (amended in 2002 by UNAIDS/02.49E).

Through the years, I have had the pleasure of working with some of the great advocates and innovators in the field of HIV/AIDS such as A. Cornelius Baker, Scott Burris, Chai Feldblum, Jeffrey Levi, William Rubenstein, David Schulman, and David W. Webber. Sadly, many valiants have lost their battle with AIDS such as Terry Beirn (who worked on Senator Edward Kennedy's staff) and Tom Stoddard (who worked on a Hastings Center AIDS project). I am particularly grateful to David Schulman for his careful prepublication review of this book.

I received generous funding for my work on HIV/AIDS from UNAIDS and the WHO, Department of Health and Human Services, Centers for Disease Control and Prevention, National Institutes of Health, AmFAR, and Henry J. Kaiser Family Foundation.

My colleague, James G. Hodge Jr., ably led a team of bright and energetic Fellows, students, and staff at Georgetown University Law Center, including Stephen Barbour, Dan Cooper, Gabe Eber, Lance Gable, Megan Gunther, Kevin Haeberle, Laura Kidd, Jane Kim, Katherine Kirking, Jennifer Leonard, Marguerite Middaugh, and Anna Selden. I want to single out Lesley Stone, Lauren Marks, and Kathryn Watson for their outstanding work in efficiently coordinating the research and editing of the book. I want to thank Professor Denis Galligan for giving me the opportunity to work on this book during my year at the Centre for Socio-Legal Studies at Oxford University.

The editors for this book series, Allan M. Brandt and Larry R. Churchill, originally approached me with the idea for this volume. Sian Hunter, my editor at the University of North Carolina Press, offered advice and encouragement throughout the process. I am most grateful to each of them.

My wife Jean and children, Bryn and Kieran, have been by my side throughout. I love them and thank them for all of their love and support.

Lawrence O. Gostin, J.D.,, LL.D. (Hon.) Professor and Director, Center for Law and the Public Health at Georgetown and John Hopkins University