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Authors: John Aberth

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AIDS paranoia did not stop the installation of “touchless” hand dryers, soap dispensers, faucets, and toilets in public restrooms, which were to become ubiquitous, and, in the end, completely unnecessary. It also did not help the public health cause that some made extreme recommendations, such as perennial presidential candidate Lyndon Larouche, whose ballot initiative in California to quarantine all AIDS victims (presumably for life) went down to resounding defeat, or the conservative commentators William F. Buckley and Ann Coulter, who proposed tattooing HIV-positives on the buttocks or genitals. On the other hand, it is also undoubtedly true that, due to civil rights agitation, some opportunities to contain the scope of the epidemic were tragically missed. The notorious San Francisco bathhouses, for example, which served as almost perfect breeding grounds for AIDS with their abundant opportunities for anonymous, promiscuous sex, were finally closed down by the city’s Public Health director, Mervyn Silverman, in 1985 with little fanfare or protest, but by then it was largely a moot gesture as most of their clients had already made the conscious choice to change their “high-risk” behaviors.

There were plenty of other social conundrums with respect to AIDS. Housing and job discrimination against AIDS patients, which had received the tacit blessing of the attorney general, Ed Meese, was overturned by the Supreme Court on the grounds that their condition qualified them for handicapped or disabled status, and yet misinformed bigotry continued to occur nonetheless, such as doctors and ambulance personnel refusing to treat people known to be HIV infected, police officers wearing gloves and other protective gear when forced to interact with people with AIDS, insurers denying coverage on the basis of membership in one of the “high-risk groups,” and immigrants denied entry on the basis of AIDS

screening, which played havoc with attempts to host international conferences in the United States on AIDS. (This last policy has only now been reversed by the administration of U.S. president Barack Obama.) Particularly heartbreaking were the so-called innocent victims of AIDS, namely, hemophiliac children (who relied on blood products combined from many different donors) denied access to schools after they tested HIV-positive, owing to false fears that they could spread the disease in certain (highly unlikely) scenarios, such as bloody sports contact.

Such was the case of Ryan White of Indiana, or the Ray brothers from Arcadia, Florida, whose family quit town after their house was burnt down.

Aside from civil rights, another major agenda of ACT UP at this time was to improve access to experimental treatments for AIDS patients, whose mortal outlook obviated the usual bureaucratic protocols surrounding new drugs and who often lacked the financial wherewithal to pay for them. Thus, “die-ins” were staged at regional offices of the Food and Drug Administration (FDA), and a group of protestors chained themselves to the VIP balcony at the New York 148 y Chapter 6

Stock Exchange. It could be said that the impact of these protests produced the desired result, for the FDA subsequently approved AZT relatively quickly, in a matter of months rather than the usual years, and Burroughs Wellcome, the manufacturer of AZT (with considerable help from the National Cancer Institute), nearly halved the original ten-thousand-dollar-per-year price tag of its drug. Anthony Fauci, director of the National Institute of Allergies and Infectious Diseases (NIAID), earned praise for his championing of an unprecedented “parallel track” approach designed to get investigational new drugs (INDs) into the hands of AIDS patients excluded from clinical trials or “compassionate use”

programs from drug manufacturers. At the same time, however, Fauci was heavily criticized for failing to produce any new effective treatments from his AIDS

Clinical Trials Group (ACTG), and sometimes the side effects of the new drugs were so severe that patients preferred to die rather than continue treatment.12

In terms of presidential policy, the Republican administration of President Ronald Reagan betrayed considerable insensitivity to the plight of AIDS victims, since the disease itself was not publicly acknowledged by the president until 1987, undoubtedly due to its strong associations with the gay community. And yet, for a fiscally conservative administration, the federal AIDS budget grew as-tronomically during the Reagan years, from $5.5 million in 1982 to over $900

million by the end of the presidency in 1988. Meanwhile, Reagan’s outwardly staid surgeon general, C. Everett Koop (known for his signature bow ties), surprised everyone with his AIDS report in 1986 that recommended comprehensive and “value-neutral” sex education in all primary and secondary schools as part of an effort to combat AIDS spread, which nonetheless proved unpalatable to the majority of U.S. households, especially in the conservative heartland. The subsequent administration of a more moderate Republican, President George H. W.

Bush, signaled a greater willingness from the president to empathize with AIDS

patients and champion antidiscrimination laws, even as he was criticized for failing to provide substantial leadership in the fight against AIDS. Appointing the HIV-positive basketball star Earvin “Magic” Johnson to the National AIDS

Commission might be called an empty gesture, but the administration did put its money where its mouth was, increasing federal funding for AIDS-related research to over two billion dollars by 1992 and passing the Ryan White Care Act in 1990, which helped funnel special AIDS funds to the neediest cities. Indeed, AIDS funding could be said to be enormously disproportionate when compared to that for other diseases. The amount spent per AIDS death was four to five times higher than that for the next most expensive diseases, despite the fact that AIDS afflicted a relatively small number of patients, at 120,000 in the United States in 1992, a small fraction of the fifty million estimated Americans suffering from the leading ills of heart disease, stroke, and cancer. The succeeding Demo-AIDS y 149

cratic administration of President Bill Clinton naturally continued or amplified these trends, yet even Clinton found there were limits to what he could do in terms of AIDS policy. He backed away from federal funding of needle exchange programs, despite the fact that they were proven to be effective in limiting the spread of HIV among drug users and that such programs were already in place in several dozen cities, often in defiance of state laws.13 He also failed to secure passage of universal health care legislation, which was needed to help poorer patients gain access to ever more expensive treatment regimens for AIDS and to relieve the financial burden on Medicaid (where each patient on triple combination therapy cost the program thirty thousand dollars per year). Although universal health care reform was finally passed under President Obama, it remains to be seen how it will be implemented on a local level in each of the fifty states, some of which are pursuing legal challenges to the new law.

The Clinton era of the 1990s represented a seismic shift in the medical treatment of and overall culture surrounding AIDS. In 1996, a new treatment regimen was announced, called “combination therapy,” in which a drug “cocktail”

of two different reverse transcriptase inhibitors, such as AZT, nevirapine, or dideoxyinosine (ddI), was combined with one of the newly developed protease inhibitors, such as Crixivan, in order to deliver a triple knockout blow that was found to reduce viral loads to undetectable levels for over a year, in effect eliminating all traces of the virus. Its drawbacks were an extraordinarily complicated pill-taking regimen, which increased chances of noncompliance and hence potential drug resistance in HIV; increased possibilities of side effects; and an exponentially greater expense, which posed a problem for the increasing proportion of AIDS patients too poor to afford the drugs. Nonetheless, combination therapy held out the promise of a return to an almost normal lifestyle, with potentially decades added on to an AIDS victim’s life expectancy. This in turn necessitated a reconfiguration of support services for AIDS patients, from end-of-life issues to now more mundane concerns of continued housing, employment, financial planning, and so on. Indeed, so successful was combination therapy in turning AIDS into a chronic and manageable disease that a sense of complacency now crept in among both infected victims and “at-risk” groups. In the gay community, AIDS was transformed from the “gay plague” into the “gay diabetes,”

and there was a noticeable “backsliding” in safe sex practices and precautions that had been championed earlier, perhaps under the mistaken belief that undetectable viral loads in the blood meant that the disease could not be transmitted. As a consequence, new infections among the gay community began to rise once again during the 1990s.14 Thus, combination therapy achieved some dramatic benefits in the years immediately following its introduction, but in the long term it seems to have brought us to no more than an impasse or deadlock in relation 150 y Chapter 6

to the disease. By the end of the 1990s, for example, the number of new HIV

infections and AIDS deaths in the United States as reported to the CDC had fallen to forty thousand and less than twenty thousand, respectively, down from highs in the first half of the decade at eighty thousand and fifty thousand. Since then, however, these numbers have scarcely changed: As of 2007, new AIDS

diagnoses stand at just over 37,000 while annual deaths from the disease are at roughly 14,500 or maybe higher. Currently, over half a million people have died of AIDS in the United States, and more than a million are estimated to be living with the disease.15

There were other ways in which the late 1990s foreshadowed trends that were to emerge in the third decade of AIDS in the United States, or in other words the first decade of the third millennium. If there was a certain complacency toward AIDS among the gay community as a result of its being perceived now as a successfully treatable disease, this was even more noticeable among the general population at large. AIDS can now be said to have earned the title of “forgotten epidemic” that was formerly reserved for influenza. Partly, I think this has been the result of an inevitable backlash against the overhyped threat of AIDS in its early days, as the general public intuited data that suggest that the disease had yet to make much headway among the majority heterosexual population. AIDS

was also bound to fade from the public consciousness as its morbidity and mortality rates declined and then leveled off and as it was no longer perceived as a death sentence due to new and improved antiretroviral therapies. This growing obliviousness toward AIDS was reflected in popular culture. Attention garnered by AIDS perhaps peaked in the late 1980s and early 1990s, as the AIDS quilt was unveiled several times at the national mall in Washington, D.C., and made regional tours throughout the United States, while the mainstream Hollywood film
Philadelphia
, released by TriStar Pictures in 1993, earned an academy award for best actor for Tom Hanks, who portrayed a gay lawyer suing his firm for unlawful dismissal after coming down with AIDS, and who was represented by an initially homophobic black colleague, played by Denzel Washington. But by 1998, AIDS was given absolutely no mention in the comedic film
The Wedding Singer
, which was steeped in 1980s nostalgia, and the 2009 “mockumentary”

Brüno
, about a fictional gay Austrian fashion journalist who interacts with real people primarily on homoerotic themes, mentions chlamydia, but not AIDS.

(When asked on the online interview program Digg Dialog to name “the hottest illness around now,” Brüno cited “bulimia,” the joke being that this is really a noninfectious eating disorder rather than a disease proper.) And yet AIDS historian Susan Hunter warns in a 2006 book,
AIDS in America
, that there is the potential for AIDS to flare up again in the United States with even greater force than in the early 1980s and to spread far more deeply than ever before into the AIDS y 151

mainstream white heterosexual population. Hunter’s claims rest on a number of contentions that are mainly supported by anecdotal evidence, such as that large numbers of heterosexuals secretly practice homosexual intercourse on the “down low,” that teens engage in promiscuous anal and oral sex as a way of technically fulfilling abstinence-only pledges, and that AIDS statistics reported by the CDC

vastly underestimate the true scope of the epidemic. It is undeniable, however, that young people and women are making up greater proportions of new HIV

infections; that unprotected intercourse, prostitution, and drug use continue to grow as contributing factors of infection; and that AIDS has established a disproportionate presence in America’s growing prison population.16

An additional factor in the marginalization of AIDS is the continued marginalization of its “high-risk” groups. Even as AIDS was making a resurgence in the gay community in the late 1990s, it was also migrating toward racial minority groups, namely, blacks and Hispanics, a trend that had commenced since the late 1980s. At the end of the 1990s, blacks’ overrepresentation in HIV infections was becoming quite dramatic, at 45 percent of all new cases, even though blacks made up only 12 percent of the general population. This disparity was also evident in the subpopulation of HIV-positive black women, who outnumbered their white female counterparts by a ratio of fifteen to one in 1995. These trends have hardly changed in recent times. As of 2007, blacks made up 44 percent of all people living with AIDS, while whites constituted the next largest group at just over 35

percent; and Hispanics, at 19 percent. Male-to-male homosexual contact was allegedly behind 47 percent of these existing AIDS cases in the United States, while high-risk heterosexual contact and injection drug use are roughly equivalent at 24

and 22 percent respectively.17 Even though it has been speculated that blacks have a genetic predisposition to AIDS, it is in fact far more likely that certain environmental cofactors are responsible for the higher rates of HIV infection among blacks through IV drug use and homosexual and heterosexual intercourse, such as higher rates of needle sharing and greater prevalence of STDs, including syphilis, chancroid, genital warts, and herpes. (On the other hand, researchers have found that a significant minority of the Caucasian population do have defective genes encoding the CCR5 coreceptor for HIV, which gives them partial or almost complete immunity to the disease. The theory that this was inherited from European ancestors immune to the Black Death is, however, almost pure speculation.18) Some argue that to lower AIDS incidence among blacks, efforts should be focused on improving their socioeconomic status and tailoring educational materials to their specific culture. It is likewise claimed that black churches and communities have historically been reluctant to face up to issues of sexual promiscuity, drug use, and homophobia, which have only contributed further to the furtive advance of AIDS. In addition, substantial percentages of surveyed minorities profess 152 y Chapter 6

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