A Time Line
A basic knowledge of the history of epidemics is helpful in understanding the transmission and epidemiology of HIV/AIDS. William McNeill’s Plagues and Peoples offers a historical and sociological overview of epidemics. McNeill details, in a relatively cheerful tone, how biological evolution, the recent ease of travel and human migration, and human interventions alter natural balances/processes and lead to disease transmission. In The Coming Plague: Newly Emerging Diseases in a World out of Balance, Laurie Garrett provides a vast, comprehensive picture of the course of epidemics over the centuries. Like McNeill, she notes that the increase in human population and ease of travel together serve as a perfect springboard for the spread of viruses. The Patient as Victim and Vector: Ethics and Infectious Disease, by Margaret Battin and others, examines disease control policies of the past (e.g., containment, isolation) and how to plan ahead for new epidemics.
In the 1970s, North America found itself relatively epidemic and plague free. Smallpox, measles, polio, and cholera had been eradicated thanks to vaccination programs and advanced sanitation procedures, and these diseases were believed to be limited to less developed countries. Things changed in 1981. In June, the CDC reported five cases of Pneumocystis pneumonia (PCP), which affects primarily immunocompromised individuals, in homosexual men in Los Angeles. By the end of 1981, the CDC had received some seventy reports of PCP infections in Los Angeles and New York City. The infection was initially called “GRID,” or “gay-related immune deficiency.” The CDC soon identified the outbreak as a new infectious disease and established the term “acquired immune deficiency syndrome”—”AIDS.” The cause was still unknown. The epidemic advanced rapidly.
The historical impact of HIV/AIDS is bound up with the public’s attitude toward the populations first affected. The American Psychiatric Association, until 1973, classified homosexuality as a psychological disorder, curable with psychotherapy. The gay rights movement had started only a few years prior with the 1969 “Stonewall riots.” Because AIDS first appeared in gay men and injection drug users, it was stigmatized by many and seen as “divine retribution” by others. Though eventually science confirmed that exchange of HIV-infected bodily fluids, not homosexuality or immorality, was the cause of AIDS, the government’s cautious response in researching and finding drugs for treatment infuriated the gay population, which already felt marginalized.
Credit for the identification of HIV as the cause of AIDS goes to virologists Luc Montagnier (of the French Pasteur Institute) and Robert Gallo (at the National Cancer Institute), who in the mid 1980s independently isolated virus genomes they suspected caused AIDS. The men’s discoveries were more or less simultaneous, though Montagnier actually made the breakthrough discovery and shared his samples with Gallo. Both men applied for US patents for their discoveries, and the patent office approved Gallo’s test because his application predated that of Montagnier. This stirred up great controversy. The French government sued the United States, and years of court filings ensued. The suit was dropped when the National Cancer Institute agreed to share credit for the discovery of HIV with Montagnier, add Montagnier’s name to the patent, and share royalties from the sales of the diagnostic test kit. The two scientists recount these travails, Gallo in Virus Hunting: AIDS, Cancer, and the Human Retrovirus: A Story of Scientific Discovery and Montagnier in Virus: The Co-Discoverer of HIV Tracks Its Rampage and Charts the Future. In 2008, Montagnier and two coworkers won the Nobel Prize in medicine for their discovery of HIV; Robert Gallo was not included. In his The Burdens of Disease: Epidemics and Human Response in Western History, J. N. Hays discusses the “unseemly wrangle” between Gallo and Montagnier in a chapter titled “Disease and Power.”
Several books try to trace the evolutionary trail of HIV. Edward Hooper’s The River: A Journey to the Source of HIV and AIDS hypothesizes that HIV initially came from the Belgian Congo through an experimental oral polio vaccine contaminated with simian immunodeficiency virus. That scenario has since been proven incorrect, although the author claims otherwise. Jacques Pepin offers a different theory in The Origins of AIDS, an engaging account of the initial transmission of the virus from chimpanzees to humans by the consumption of “bushmeat.” The chief virtue of Pepin’s treatment, which is supplemented with maps and graphs, is that it offers gleanings of the history of the political structure of many African countries.
In 1985, actor Rock Hudson, having denied for decades that he was homosexual, announced he was HIV-positive; he died three months later. In 1986, President Reagan first mentioned the word “AIDS” in a public speech. Many religious entities saw AIDS as a moral issue and used the church’s influence in political circles to assure needle exchange programs were not funded by the government and that sex education classes in public schools taught that abstinence, not condoms, was the best way to prevent disease. Peter Allen’s The Wages of Sin: Sex and Disease, Past and Present describes the battle of the so-called religious Right as it tried to enforce traditional biblical ways of dealing with sexual behavior and gender roles.
The first antiretroviral drug, azidothymidine (AZT), was approved by the FDA in 1987, with a proposed cost to the patient of $10,000 per year. A grassroots organization, the AIDS Coalition to Unleash Power (ACT UP), immediately sprang up to protest the high price of treatment and the paucity of research being done to find a cure. Under pressure from ACT UP, the manufacturer of AZT, Burroughs-Wellcome, lowered the price of the drug. Larry Kramer was one of the founders of ACT UP, and in his Reports from the Holocaust: The Making of an AIDS Activist he confirms exactly how furious he was at lives lost: the book comprises reprints of Kramer’s letters to government officials and essays criticizing New York City Mayor Ed Koch, President Reagan, and particularly the NIH for taking so long to get drugs to market. The documentary feature film How to Survive a Plague shows how ACT UP, through determination and public demonstrations, forced the FDA to change the drug approval process by speeding up clinical trials and so getting drugs to market faster. The ACT UP Oral History Project preserves the legacy of the organization by providing an online collection of interviews with surviving members, in both video and transcribed PDF formats.
In Benjamin Shepard’s White Nights and Ascending Shadows: An Oral History of the San Francisco AIDS Epidemic, a collection of interviews, thirty San Franciscans reveal how the epidemic affected the San Francisco population and led to “gay rights [becoming] human rights.” Cleve Jones’s memoir (written with Jeff Dawson), Stitching a Revolution: The Making of an Activist, recounts the path he took to launch the AIDS Memorial Quilt—online at The AIDS Memorial Quilt—to recognize those lost to AIDS. The quilt, which Jones termed a “traditional-family-values symbol,” became known worldwide. Undeniably, the best-known book on the early days of HIV/AIDS is journalist Randy Shilts’s And the Band Played On: Politics, People, and the AIDS Epidemic, an enormous tome that recounts the history of the first five years of the epidemic in a novelesque style. Another excellent resource for understanding the contemporaneous reaction to the disease is Carol Pogash’s As Real as It Gets, which includes interviews with the clinical staff of San Francisco General Hospital, the epicenter for treating the outbreak on the West Coast.
Concerned about HIV/AIDS within its own borders, in 1987 the US government added HIV to its immigration exclusion list, barring those who tested positive for HIV from other countries from traveling, or immigrating, to the United States. In 1988, the government was concerned enough about the epidemic to establish the Office of AIDS Research (part of the National Institutes of Health) and mail to all households in the country a brochure titled “Understanding AIDS: A Message from the Surgeon General,” by C. Everett Koop. In 1991, basketball player Earvin “Magic” Johnson announced he was HIV-positive, with the result that he was compelled by fearful teammates to retire from basketball. In 1992, Mary Fisher, a white, affluent Republican, infected through heterosexual sex with her husband, gave a speech about AIDS to the Republican National Convention. The American general public now took notice of the disease.
In 1995, a new treatment regimen—the aforementioned “drug cocktail”—was developed in the laboratory of Dr. David Ho (one of the major contributors to AIDS research). Patients who were previously near death recovered so remarkably that the phenomenon was called the “Lazarus effect.” Within the space of two years, there was a dramatic decline in AIDS-related deaths in the United States. The Kaiser Family Foundation tracks this, and indeed the entire epidemic, at The Global HIV/AIDS Epidemic: A Timeline.
Alongside the passionate descriptions of personal tragedy and the search for a cure, one finds literature by an unorthodox community of denialists. The denialism rabbit hole goes deep: some think the KGB and/or the CIA deliberately infected people; some believe pharmaceutical companies, the medical establishment, and government scientists cannot be trusted. The writings by and about deniers over the years deserve attention because of the historical impact they had and continue to have—in part because some of the authors have respected scientific and academic pedigrees. For example, in the mid-1990s Peter Duesberg—an elected member of the prestigious National Academy of Sciences—published Inventing the AIDS Virus, an investigation of why he believed AIDS is not caused by a virus but is the result of using immunity-suppressing recreational drugs (amyl nitrate “poppers,” cocaine, and so on); toxic pharmaceutical drugs such as AZT; and immune system damage by antibiotic drugs used to treat STDs. Another prominent denier is Kary Mullis, a Nobel laureate in chemistry, who wrote in his autobiography, Dancing Naked in the Mind Field, that he disagreed with evidence showing that HIV causes AIDS. In 2000, South African President Thabo Mbeki, with counsel from known dissenters such as Duesberg, concurred that HIV was not the cause of AIDS—a position that led Mbeki to delay in obtaining ART drugs for his nation. Mbeki’s inaction and his government’s science phobia are exposed in The Politics of AIDS Denialism: South Africa’s Failure to Respond by Pieter Fourie and Melissa Meyer. And in Debunking Delusions, Nathan Geffen, founder of South Africa’s Treatment Action Campaign, provides a history of that activist organization. In The AIDS Conspiracy: Science Fights Back, Nicoli Nattrass writes not about why the denial theories are wrong or irrational but about the background stories that make denialist theory believable to so many. He recounts the history of medical abuses of blacks at Tuskegee University and in Africa by the apartheid regime—historical events that have led many to believe HIV is a man-made virus or bioweapon.
During the late 1990s, in the wake of the realization that treatment with HAART worked and saved lives, the demand for less expensive drugs in developing countries became an international cause. Western pharmaceutical companies, backed by the US government, refused to allow affordable generic versions of their drugs to be made and sold at lower prices to poverty-stricken countries. Dylan Mohan Gray’s documentary film Fire in the Blood: Medicine, Monopoly, Malice records efforts by activists and NGOs to bring essential medications to Africa. (The film also serves as an excellent resource for understanding the intricate issues surrounding politics, patent laws, and intellectual property rights.) Among the many people interviewed in the film are Archbishop Desmond Tutu, President Bill Clinton, and Joseph Stiglitz, Nobel laureate in economics. The Global Governance of HIV/AIDS: Intellectual Property and Access to Essential Medicines, edited by Obijiofor Aginam, John Harrington, and Peter Yu, explains the complex international trade and intellectual property protection issues of HIV/AIDS medications. In the late 2000s, newly elected President Barack Obama introduced the White House’s National HIV/AIDS Strategy and ended the HIV travel and immigration ban, thus allowing the International AIDS Conference to return to the United States for the first time in more than twenty years. In AIDS at 30: A History, Victoria Harden, founding director of NIH’s Stetten Museum (which is devoted to NIH biomedical history), looks at HIV/AIDS from the perspective of an NIH medical researcher. The book is rich with illustrations of primary source materials from NIH and National Library of Medicine collections. Harden also created a website, In Their Own Words: NIH Researchers Recall the Early Years of AIDS, which provides oral histories—in the form of transcripts with NIH scientists—and a good deal more. And in While the World Sleeps: Writing from the First Twenty Years of the Global AIDS Plague, editor Chris Bull collects published essays by such authors as Fran Lebowitz and Stephen Jay Gould.
Researching new treatments and funding treatment of those infected are critical, but education and prevention also play a huge role in dealing with HIV/AIDS. But changing behavior is difficult. The gay community’s early attempts to stop the epidemic and prevent more infections are depicted in two excellent documentaries. Sex Positive: A Frontlines Memoir of the Battle over Safer Sex tells the story of Richard Berkowitz and others who started the safe-sex revolution. Joseph Sonnabend, a physician, suggested that “interrupting disease transmission” would prevent more HIV infections, and that led Berkowitz and activist Michael Callen to create a booklet titled “How to Have Sex in an Epidemic – One Approach,” which advocated condom use and other safe-sex methods. Because condom use was unnecessary in the gay community, the message was difficult to convey, especially at the height of the gay sexual liberation movement. This is discussed in the documentary Sex in an Epidemic, which provides interviews with the founders of the Gay Men’s Health Crisis and chronicles efforts in New York City to promote safe sex. The film includes footage from the first ACT UP protest and interviews with key players.
Other resources on prevention include Innovations in HIV Prevention Research and Practice through Community Engagement, edited by Scott Rhodes, which discusses how to reduce exposure and transmission using community-based participatory research. Though intended for public health practitioners, the CDC’s online Compendium of Evidence-Based Interventions and Best Practices for HIV Prevention highlights successful projects identified through systematic reviews. Rachel Golden et al. provide Best Evidence Structural Interventions for HIV Prevention, which offers evidence-based best practices for structural (versus behavioral) interventions. The online magazine POZ provides prevention information and treatment advances, offering daily research updates and the benefit of an extensive social networking community. Project Inform’s P.I. Perspective newsletter, which targets those with HIV/AIDS and hepatitis C and provides “inspiration, information and advocacy for people with HIV/AIDS and hepatitis C,” offers monthly digests of recent research.
 Howard L. Singer, “Institut Pasteur v. United States: The AIDS Patent Dispute, the Contract Disputes Act and the International Exchange of Scientific Data,” American Journal of Law & Medicine 15 (1989): 439.
 U.S. Department of Health and Human Services, Understanding AIDS: A Message from the Surgeon General, http://profiles.nlm.nih.gov/ps/access/QQBDRL.pdf