Discussed in this essay: The Battle of AmFar (Rob Epstein and Jeffrey Friedman, 2013); Dallas Buyers Club (Jean-Marc Vallée, 2013); How to Survive a Plague (David France, 2012); The Normal Heart (Ryan Murphy, 2014); United in Anger: A History of ACT UP (Jim Hubbard, 2012); We Were Here (David Weissman, 2011).
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New York Times, July 3, 1981
In 1981, a cluster of diagnoses among gay men in Los Angeles alerted America to the presence of a new disease. As similar cases were identified in other cities, a specter appeared in the United States and then worldwide: a fatal disease with no known cause, no effective treatment, and no single set of symptoms at onset.
The news got worse for fifteen years: HIV could lay dormant for over a decade so that retrospective studies showed that the rates of infection were already staggeringly high in several risk groups, foreshadowing the deaths of thousands of men, women, and children in the United States. As a syndrome rather then an illness, AIDS manifested itself in a myriad of ways, so that diagnostic criteria were revised dozens of times to include an ever-broader group of opportunistic infections. When public health agencies turned their attention overseas, they discovered the largest blood-borne epidemic in recorded history.
The AIDS crisis is receding into historical memory. In the past five years, a series of films have begun to investigate the spread of the disease and the consequent political and social transformations that occurred in American culture between 1981 and 1997. Three recent documentaries, for example, examine the cities hit hardest by AIDS: How to Survive a Plague and United in Anger chronicle the history of the AIDS Coalition to Unleash Power (ACT UP), which was founded in New York in 1987 and remained effective for a decade, instigating a radical rethinking of the gay rights movement as well as the role of patient advocacy in the American health care system. We Were Here focuses on San Francisco’s gay community, examining the lives of men and women who lived through the crisis while acting as volunteers, caregivers, or witnesses. As reconsiderations of that time, these films draw meaning from a period that was incomprehensible to those who confronted the epidemic, got ill, cared for the dying, and – if they were very lucky – lived to see AIDS become a chronic disease.
Even if the first two films veer off to different conclusions, How to Survive a Plague and United in Anger tell parts of the same story, utilizing many of the same informants and sharing footage from the ACT UP Oral History Project. ACT UP’s graphic sophistication and use of new media became its signature: while the AIDS crisis might have been the last American protest movement to predate the Internet, ACT UP videotaped everything, which helped shape protests and provided abundant documentation for distribution and archiving. Critics who dismissed ACT UP’s tactics as self-consciously stagey miss the point: theatricality was its genius and kept AIDS in the public eye long after earnest appeals ceased to register. After all, these were mostly New Yorkers who were already employed in media, publishing, and the arts: it would have been even more bizarre if ACT UP had mimicked civil rights, women’s liberation, or antiwar protests, though there are obvious debts to each of these.
How to Survive a Plague doesn’t pull any punches: it begins with silent images of nearly unrecognizable figures that rekindle the terror of a disease that savaged its victims. It documents ACT UP from the playwright Larry Kramer’s call to arms in March 1987 through the evolution of its effective protests at hospitals, pharmaceutical companies, the Food and Drug Administration, the National Institutes of Health, and most famously the “die-in” at St. Patrick’s Cathedral that underscored the influence of the Catholic diocese in health care and City Hall. ACT UP aimed well: drug prices dropped, patient care improved, and the church’s grip weakened.
While ACT UP was a wildly successful experiment in anarchist protest, director David France ultimately focuses on the Treatment Action Group (TAG), one of its many affinity groups. Each ACT UP cell had its own rationale, with some specializing in media, some in nonviolent protest, and others comprised of people from dozens of other cities, artists, people of color, and advocates of alternative treatments and so on. The structure worked, so that cells emerged, thrived, and instructed each other.
TAG was not that concerned with the revolution. Largely comprised of well-educated men who were HIV+, they used ACT UP’s notoriety as a point of entry, argued for increased access to existing drugs, designed streamlined approval procedures, and schooled themselves in the hard work of comparative epidemiology, earning the respect of scientists, drug companies, and the NIH. In 1992, TAG separated from ACT UP and reestablished itself as an independent think tank. Collaborating with Big Pharma paid off, and therapies that combined the new protease inhibitors with existing antiretroviral drugs entered the market in 1996 and 1997.
TAG got lucky, but the difference between heroism and irrelevance can hinge on good fortune: Peter Staley was an exceptionally eloquent spokesman who is inevitably described as boyishly handsome, Jim Eigo was the most theoretically savvy, Mark Harrington was a Harvard graduate student who helped design alternative drug protocols, and Bob Rafsky was an activist whose decline and death stood in for innumerable losses. Like all directorial strategies, this one has pluses and minuses: it is easier to care about these men and women than it is to discuss protest tactics and procedure, international aid policies, or the ethics of double-blind clinical trials, but many of these less cinematic issues also contributed to the evolution of AIDS policy.
United in Anger takes a different tack. Rather than choosing a relatively small number of correspondents, its much larger cast echoes ACT UP’s cacophony. Some directorial choices are regrettable: a timeline scrolls through the protests with a pornstar soundtrack, suggesting more cogency and impact than the evidence might support. But letting more people speak allows more viewpoints to be articulated: activists like Maxine Wolfe drew upon her leftist history and saw the possibilities of fomenting broader social change, boyishly handsome Staley quit his job at Morgan Guaranty and transformed himself, and others joined because of personal loss, wanted camaraderie, or the exhilaration of a dark carnival.
Jim Hubbard examines the group dynamics of ACT UP, questioning the motives and agendas of the infected as well as those who ended up supporting them for years, and speculates on the ultimate impact of ACT UP: after watching this film, it is hard to imagine either Occupy Wall Street or patient advocacy without it. Several people admit to being fascinated and comforted by the community that developed: the cultural critic Douglas Crimp confesses to a kind of addiction, while other people cop to the sexualized nature of meetings where fervor and desire coexisted.
But the crisis worsened, with exponential caseloads and toxic treatments compounding the disheartening realization that protesting political malfeasance would not be enough to staunch epidemic losses. In 1994, the results of the Concorde study were released and cast doubt over the efficacy of AZT, demarcating the epidemic’s nadir. Incremental change began to occur after President Clinton’s inauguration, with the expansion of federal funding and the beginning of more effective combination therapies, but the policy debacle over “Don’t Ask, Don’t Tell” meant that the administration quickly became gun shy over gay and lesbian issues. True social change would be driven by medical breakthroughs in 1996 and 1997 when highly active anti-retrovirals would enter the market, and rage at governmental inactivity – which was always ACT UP’s raison d’être– could be replaced with less frenetic responses. ACT UP eventually cleaved and diminished as many HIV+ people felt that they had reached their objectives and others felt that they had failed as a catalyst for radical change.
Despite its posing, immaturity, divisiveness, and rancor, ACT UP was magnificent. Here were people who had the energy and determination to scream at a system that was incapable of addressing the acute issue of fatal disease and the circumstances that exacerbated it. Using direct action, street theater, and samizdat tactics, it made leviathans dance, however awkwardly: the government reacted, pharmaceutical companies and research institutions sat up, and communities redefined themselves to accept those who were ill and shunned.
The epidemic was different in San Francisco. Virtually all of the city’s early cases occurred in gay men, half of whom were infected by the mid-1980s. Seventy percent of those who died were born between 1940 and 1960. Unlike New York, where the outer boroughs became a locus of disease for the poor and people of color, the epidemic concentrated geographically in the Castro and its adjacent neighborhoods. The gay community had already been politically tempered by the election of Harvey Milk as well as the near exoneration of his murderer. That isn’t to say that it was easy: the Castro had a caseload that rivaled Kinshasa’s, and perhaps one out of three gay men in the city died.
San Francisco had a longer record of tolerance than most American cities, and its gay community never developed the same oppositional stance as New York’s because it had more power and fewer enemies, though it reacted quickly enough to conservative opportunists like Jerry Falwell and Lyndon La Rouche. Randy Shilts’s reporting in the San Francisco Chronicle kept AIDS on the front page, and the city and state reacted by funding social services and clinical trials. Finally, volunteers expanded the resources available for people living with AIDS and augmented governmental expenditures enormously, providing free practical support, emotional counseling, transportation, in-home care, food, and innumerable miscellaneous services in what became known as the San Francisco Model.
Once the epidemic struck, the gay community immediately understood that the burden of care would fall upon them disproportionately, and they found the resources to aid those who became ill before succumbing to the disease themselves. Four of We Were Here‘s informants were propelled into the epidemic: Ed Wolf spent years as a volunteer on the AIDS Ward at San Francisco General Hospital, Paul Boneberg became a community spokesman, Eileen Glutzer was a nurse who administered clinical trials as well as bedside care, and Daniel Goldstein was a successful artist who started “Under One Roof,” a gift store whose proceeds supported AIDS services.
Director David Weissman locates an unvarnished emotional resonance that may not be as apparent in the other two documentaries: ACT UP may have fought back, but being united in anger could also cauterize despair. In We Were Here, we hear instead how death infiltrated life: Boneberg and Goldstein lost partners and friends, while Glutzer and Wolf watched one patient after another die in spite of their efforts. Guy Clark, the fifth witness, saw the epidemic from the street: a sidewalk florist in the Castro, he became acutely aware of the manner in which the community coped and gently reminds us that grief is usually a private tragedy rather than a political act. In one of the film’s most resonant moments, Clark recounts broke customers asking for whatever flowers he might spare for an unending stream of threadbare funerals.
The losses were incalculable. One respondent after another uses the vocabulary of war trauma to describe their experience during the plague, and is equally careful to emphasize their recovery. But you can dodge a bullet and end up standing on the freeway: long-term HIV infection, even when well treated, is characterized by an acceleration of the aging process, so that the infected are prone to heart disease, early onset cancers, and metabolic problems that can cause arteriosclerosis, diabetes, and a host of other diseases. Emotional difficulties and consequences remain uninvestigated to any large extent: sadly, Spencer Cox, a charismatic member of ACT UP who later went on to found the Medius Institute to investigate these issues, eventually developed substance abuse problems, became depressed, noncompliant with his medications, and died at 44.
Relatively few mainstream films about AIDS have been commercially successful, in spite of the disease’s widespread social and political impact. Early in the epidemic, both Parting Glances (1986) and Longtime Companion (1989) attempted to portray the impact of the disease on small groups of gay men in a period when there were few treatments and relatively little political activity. In Jonathan Demme’s Philadelphia (1993), Tom Hanks played an attorney with AIDS who sues his former firm for wrongful termination, a performance that garnered Hanks an Academy Award. In 2005, Chris Columbus directed the film version of Rent, an updated La Bohèmethat had a long run as a Broadway musical that was also modestly successful at the box office.
What seemed to get produced instead were a series of mainstream films that either obliquely referenced AIDS – which happened as early as Woody Allen’s Hannah and Her Sisters (1986) – or that served up narrative proxies for the disease. In Beaches (1988), Barbara Hershey dies of a terrible disease in the care of her best friend. In Dying Young (1989), Julia Roberts falls in love with a man who is stricken with blood cancer. In Bram Stoker’s Dracula, directed by Francis Ford Coppola (1992), a blood-borne pathogen turns Gary Oldman into an insatiate carnivore. In Outbreak (1995), an infected monkey jumps ship and wreaks havoc in Northern California; in Contagion (2011), the Centers for Disease Control struggles to control a new pathogen, and in World War Z (2013), Brad Pitt stands between the remnants of civilization and a zombie apocalypse. Predictably, a virus of unknown origin infected the undead.
Dallas Buyers Club, directed by Jean-Marc Vallée, was the first film concerning AIDS released by a major studio in nearly a decade. Part of its success is due to the film’s star power: Matthew McConaughey plays Ron Woodruff, an electrician and roustabout who finds out he has AIDS in 1985 after a workplace accident, and Jared Leto is Rayon, a transgender patient who befriends Woodruff after his diagnosis and becomes his business partner. Both actors received the Academy Award in 2014.
Woodruff fights for more effective treatments than those being prescribed by his doctors; in his case he turns this personal need into a profitable business, charging other HIV+ men and women a monthly fee to get drugs that are unapproved in the United States and that he has smuggled in from Mexico and, then, as the business takes off, from around the world. Vallée has decided to romanticize the outlaws of AIDS activism while demonizing doctors and medical institutions.
While there is certainly enough blame to go around – and Woodruff should be lionized along with other treatment activists – Dallas Buyers Club portrays a medical bureaucracy that colluded with pharmaceutical companies to provide ineffective treatment at the cost of patients’ lives. In reality, however, many clinics and practitioners were willing to experiment with alternative treatments that didn’t involve drinking shampoo: the sophistication of many patients and the relative lack of substantial knowledge about how AIDS progressed altered the traditional power dynamic between physicians and patients, which might be as interesting a story as yet another maverick fighting the system.
Dallas Buyers Club
Perhaps unfairly, the film vilifies AZT, the first drug approved by the Food and Drug Administration, which – like many first-generation chemotherapies – had severe toxicities and limited clinical effectiveness. Nevertheless, AZT was eventually used in combination with more effective drugs and remains in the medicine chest, while some of the treatments imported by Woodruff would prove to have little positive impact on disease progression or immune response. The path to effective treatment was not particularly linear: incurring the wrath of fellow activists, even TAG understood that drug testing needed to be designed logically in order to provide reliable data on which to build effective protocols.
All of these films describe the epidemic between 1985, when an accurate AIDS antibody test entered the market and became a widely used diagnostic tool, and 1996, when the development of combination therapies reduced viral load so it could be virtually undetectable, slowing HIV’s inexorable progression so it became a chronic condition that could respond to treatment.
Both developments had widespread social consequences. While initially adopted warily, the antibody test forced those at risk to confront their impending mortality and their responsibilities to their communities, creating a constituency of those who were not yet sick but now had a high probability of developing the disease. This dilemma engendered a number of political responses, including the separation of the HIV negative from the positive – a practice referred to, hyperbolically, as viral apartheid – and the emergence of a radical AIDS agenda. Overlooked or underplayed in these films, existing gay organizations, comprised of both men and women, developed support groups, service organizations, and provided practical and emotional support in most cities and used AIDS advocacy as a means of entrenching themselves into the mechanics of federal, state, and local governments, helping normalize HIV status in health care, developing funding mechanisms, and establishing a basis for a national political movement.
In part, this gap is addressed in The Battle of AmFar (2013). At the beginning of the epidemic, Mathilde Krim, a highly regarded research scientist at Sloan Kettering Cancer Center and the wife of Arthur Krim, the head of United Artists and founder of Orion Pictures, became aware of the rising incidence of the disease in New York. Using her connections in the film industry, she contacted Elizabeth Taylor after the death of Rock Hudson and, in 1985, became a founding member of the American Foundation for AIDS Research, an organization that provided research funding, became a political advocate for people living with AIDS and HIV, and provided a clearinghouse for information concerning treatment and care.
The documentary short is well plotted – Rob Epstein and Jeffrey Friedman won an Academy Award for their earlier Common Threads: Stories from the Quilt – and utilizes the testimony or archival footage from a series of important witnesses including Krim, Taylor, Mervyn Silverman, the former head of the Health Department in San Francisco, and Ryan White, the young hemophiliac who became the face of federal AIDS care. While neither the development of an alternative funding source for further medical research nor the dedication of Krim or Taylor should be undervalued, The Battle for AmFar uncritically underscores the lopsided role that celebrity has come to play in American culture and policy formation; the only person who recognizes celebrity’s odd coin is Elizabeth Taylor herself.
Effective treatment altered the epidemic yet again. The near miraculous recovery of those responding to HAART – the “Lazarus Effect” – further alienated those who were suffering from the disease from those who could access medical care and treatment. In the gay community, political focus had already shifted from HIV to civil rights issues including gay and lesbian participation in the military and the debate surrounding civil partnerships and gay marriage that had less complicated resolutions. A decade later, new HIV infections are increasing most rapidly among gay and bisexual men of color and the poor, adding to the burdens of race and class in America.
Each filmmaker has made a decision to confront the physical manifestations of the disease differently, and even France and Weissman stop short of exhibiting the candor that Tom Joslin showed in Silverlake Life: The View from Here (1993), a cinematic diary that charts the early deaths of the director and his lover. The actors in Rent are deathbed beautiful. In Dallas Buyers Club, both McConaughey and Leto lost considerable weight for their roles, but nevertheless retain physical appeal. Disconcertingly, the men lined up outside of Woodruff’s motel-cum-office look like nothing so much as the beer line at a sporting event. The lesions, blindness, deformity, or insanity that AIDS extracted are effectively airbrushed, and the properties of the disease – the IV lines, ports, bedpans, latex gloves, and catheters, not to mention the shit, snot, and blood – have been mostly removed from the set as well. For whatever reason, AIDS is far less terrifying on film then it was in real life.
It is The Normal Heart, originally written for the stage by Larry Kramer, that most effectively utilizes film to tell the story of the epidemic more graphically. The 1985 play focuses on Ned Weeks, a writer who has become aware of a new disease infecting gay men in New York City. Kramer – or Ned Weeks, his character – is an ambivalent denizen of the gay circuit of bathhouses, bars, and the Xanadu-like Pines, a summer resort on Fire Island. After the disease is reported upon, Weeks establishes the Gay Men’s Health Crisis, to provide at least rudimentary services and support to the epidemic’s earliest cases. Increasingly frantic, Weeks alienates his friends and colleagues and is eventually ousted from the organization he founded; at the end of the play, he has a moment of benediction when he marries his dying partner, Felix, in a wedding performed by a doctor on a hospital ward.
The Normal Heart has had a circuitous path to the screen, but Kramer is such a pivotal figure in the epidemic that any insight into his activities is worth exploring. Even his most ardent fans might admit that the play suffers in comparison with other AIDS dramas, lacking the irony of Nicky Silver’s Pterodactyls or the mythological vision of Tony Kushner’s Angels in America, but it has enjoyed a long success on stage, most recently in a 2011 revival on Broadway directed by Joel Grey. As historical circumstances have changed, the love story at the play’s center has increasingly balanced its agitprop tendencies. Initially acquired as a film property by Barbra Streisand, the play was in development for years, and it has now been produced and directed by Ryan Murphy, best known for the television series Glee.
The screenplay, also by Kramer, improves on the play enormously (earlier in his career, Kramer received an Oscar nomination for his adaptation of D. H. Lawrence’s Women in Love). On stage, an excess of anger mars the drama so that by the second act, Weeks has screamed at virtually everyone from his lover to his colleagues to City Hall, and you certainly understand the necessity of shutting him up and frankly wish that you could have a hand in it. Weeks is no quieter in the film, but as portrayed by Mark Ruffalo, his frustration and anger are tempered by a bewildered decency. Staged monologues that described the worst of the epidemic – undelivered food and uncollected bedpans along with unburied corpses and unsanctified funerals are now filmed and the physical transformations that AIDS engendered are graphically represented rather than alluded to. While Julia Roberts delivers a fine performance as a doctor who has nothing to offer her patients except waning hope, it is Jim Parsons, as the hospital administrator Tommy Boatwright, who provides the emotional ballast of the film: he silently goes about establishing a service network for the afflicted while comforting those around him as they fall apart.
The long-term consequences of AIDS in America have yet to be tabulated. In spite of the stigma and fear that the syndrome engendered, a grudging respect for the political and social work undertaken by lesbians and gay men emerged in the larger body politic: the epidemic acted as a political accelerant, with organizations and foundations establishing or reinventing themselves to care for the ill, lobbying for more services, or advocating for new legislation. The inability or unwillingness to divorce HIV from its gay identity became a double-edged sword: as the epidemic progressed, gay organizations developed more power and leverage and built a national infrastructure that most interest groups and minorities could only dream of. Whether or not the gains were worth it is another question entirely.
Unfortunately, film has failed to decently address the epidemic within American minority communities or as a global pandemic. In recent memory, only two commercial films – Precious (2009) and Life Support (2007) – have addressed the role that AIDS has played in the lives of American women of color, statistically one of the most vulnerable populations in the country. As an unwanted consequence of globalization, AIDS and HIV was the first vivid illustration of how interconnected we now are and how disproportionately resources are allocated across national boundaries and the American role in medical and political intervention.
The generation that confronted the AIDS epidemic in the early 1980s and lived through the worst of it are now middle-aged and older; like other survivors of long-term struggles, they are beginning to realize that the situation they only wished would end will come to define their legacy. The dozen years of newly won freedom that existed between the Stonewall uprising and the epidemic’s outbreak are an antediluvian fable, and the crisis itself is fading in time.
These films are part of a historical record that is now being created through memoirs, primary documents, and histories. Thankfully, it is now difficult for young LGBT individuals to imagine a time when openly gay men and lesbians couldn’t work for the federal government, when they were routinely denied appointments on moral grounds, or when they could not pursue most professional career paths, work with children, or be elected to public office, or when consensual homosexual activity remained illegal, and gay marriage or adoption was unthinkable. Soon, the ravages of the plague will become memorialized, and these films will be the remaining record of the manner in which we came to terms with the American epidemic.
