The fight against AIDS revolution
October 1994
Photography Editor: Carla L. Popenfus

Parents and friends crusade for AIDS awareness at the Gay Pride march in New York City, June 1994

The losses from AIDS– of lovers and friends, of minds that shaped the way we see the world- will hang about us long after the disease has been cured. This darkness can no more be brightened by a flaccid chronicling of scientific and cultural breakthroughs in the disease than a cure announced tomorrow could forgive the years of willful neglect on the part of the U.S. government. And yet, it would be a disservice to those living with this disease to suggest that the situation they face is as bleak as it was in 1981, when the syndrome was first described. And so, in memory of the more than half a million who have died worldwide, and for the seventeen million worldwide the World Health Organization estimates are infected with HIV, we offer twenty‑five scientific, legislative, and social breakthroughs over the thirteen years of the AIDS crisis. 


In August 1981, two months after the first reported cases of 'gay cancer," writer Larry Kramer gathered a group of eighty gay men in his Greenwich Village apartment. This meeting led directly to the foundation of the Gay Men's Health Crisis (GMHC), a pioneer service and education group that became the core of the AIDS community support network in New York City.


An innovation of Dr. Joseph Sonnabend, co‑founder (along with Mathilde Krim) of the AIDS Medical Foundation (1983), a forerunner of AmFAR, and of the pioneering Community Research Initiative (1987), now CRIA, community‑based research is an AIDS breakthrough with far‑reaching impact. Most community research organizations advance treatment research by participating in large, multisite studies, so that a treatment being studied at a research institute in San Francisco might also be given to patients in New York or Miami. This way, potentially promising treatments are administered to a wider range of people with AIDS (PWAs), producing a larger pool of data, thereby speeding the approval process.


In early 1983, two of Dr. Sonnabend's patients, Michael Callen and Richard Berkowitz, co‑penned, under Sonnabend's close scientific guidance, the first safe‑sex handbook, How to Have Sex in an Epidemic: One Approach. It discusses‑ in an explicit, sex‑positive vernacular‑ how to avoid exposure to AIDS by using condoms and a little common sense. It took time to catch on, but today condoms are discussed everywhere from schoolrooms to the halls of Congress.


Early in the epidemic, it occurred to Dr. Sonnabend that if he could prevent some of the principal opportunistic infections killing PWAs, their lives might be improved and prolonged. The leading killer of PWAs was Pneumocystis carinii pneumonia (PCP). Sonnabend knew that preventive treatment for PCP had existed at least since 1977. He began the same treatment with his AIDS patients in 1982. Initially slow to embrace prophylaxis, the medical establishment has finally begun to promote it.


The community of people with AIDS is known for its fighting spirit. PWAs have come together quickly and resolutely to fight discrimination in courtrooms and in the streets, to demand resources for treatment research, and, when all else failed, to purchase, distribute, and test promising drugs on their own.


Rock Hudson's acknowledgment, in July 1985, that he had AIDS made front pages of newspapers and magazines around the world. Until then, AIDS had been a disease affecting only those whom society already viewed as “the other"‑ drug addicts, queers, Haitians. Through Hudson's celebrity, people the world over felt that a friend was dying, and the public call for action against the disease was sounded.


Ronald Reagan's surgeon general (1981‑1989) proved to be a scientific and political breakthrough. Chosen to appease the then‑nascent religious right, Dr. Koop, a conservative, surprised everyone by becoming the only sane voice on AIDS in the Reagan administration, allowing his scientific and human morality to prevail over a politicized morality.


In February 1987, a group of gay activists and PWAs blocked morning rush‑hour traffic for more than an hour in the financial district. They called themselves the AIDS Coalition to Unleash Power, or ACT‑UP, and the group's brand of highly informed, street‑theater activism has changed the way the world sees AIDS, science, and activism in general.


"We sell drugs that should be available to people with AIDS, but are not," says Sally Cooper, executive director of New York's PWA Health Group. One of the first buyers clubs in the U.S., the health group has sold promising treatments to PWAs since early 1987. Buyers clubs purchase drugs approved overseas but not in the U.S. and resell them in the States directly to people with AIDS. Many buyers clubs also sell U.S.‑approved drugs at greatly reduced prices.


Ronald Reagan was already president when AIDS emerged in 1981, but he did not utter the term AIDS in public until June 1987, and then it was not to take decisive action but to set up a commission to study the epidemic. The commission defied Reagan by issuing urgent preliminary reports stressing the need for increased funding in research, more aggressive programs of prevention education, and a policy of nondiscrimination for people with AIDS.


Signed into law in July 1990, the Americans with Disabilities Act (ADA) gave uniform, federal legal recourse to those suffering discrimination in employment, housing, or any other association related to their disability. Since AIDS has been recognized as a disability since 1984, the ADA applied to all PWAs, protecting them from the most extreme discrimination.


AIDS activists have pushed the government to streamline and accelerate the testing and approval process, through such innovations as "parallel tracking," so that a promising treatment can go through several stages of testing at the same time, "expanded access," which conditionally releases treatments in the final stages of testing to people with AIDS, and special task forces to oversee and coordinate all drug trials related to AIDS.


Early AIDS treatment researchers aimed to aggressively attack HIV, the virus associated with AIDS, with everything they could muster. It was from this philosophy that AZT, which had originally been developed as a cancer drug, and its sister drug ddl, ddC, and D4T emerged. Though long‑term testing has shown them to have little if any effectiveness over time, these drugs‑ the only ones approved for treatment of HIV in the U.S.‑do briefly boost certain immune‑system functions.


In 1993 the results of the European Concorde trial, the only long‑term, placebo‑controlled study of AZT were announced: The drug did not improve survival rates of PWAs who took it. But some see the result of the trial as a reason to hope, because at last the research establishment might look beyond a small group of highly toxic drugs for effective treatment.


Immune therapies have been used in Japan and Europe for years to combat immunosuppression occasioned by chemotherapy treatments for cancer. Now, with the failure of AZT and other antiretroviral drugs to improve survival, research is beginning to look at immune therapy as an alternative.


Alternatives to standard Western medicine‑ diet regulation, herbal remedies, acupuncture, massage therapy, et cetera‑ have gained widespread use among PWAs. In 1992 the U.S. National Institutes of Health (NIH), created an Office of Alternative Medicine with a mandate to submit alternative treatments to rigorous trials.


In 1991 twenty‑three‑year‑old Kimberly Bergalis went before Congress to beg for legislation to require all health‑care workers in America to be tested for HIV and to prohibit HIV‑positive health‑care workers from practicing. She had been infected with HIV by her dentist, she claimed. Bergalis swore she was virgin, but a medical exam prior to the congressional hearings found Bergalis' vagina to be in condition consistent with prior sexual intercourse,' and that she had vaginal venereal warts. "I did nothing wrong,' Bergalis said, tearfully, to Congress. But it seems perhaps she did‑ that is, if lying, maligning the character of a dead man, extorting funds from his estate and insurance company, and mounting a campaign of hate and discrimination qualify as wrong.'


Researchers once thought that virtually everyone infected with HIV would progress to full‑blown AIDS and die as a result. Yet their estimates of latency have extended from eighteen months to as long as ten to fifteen years. In his groundbreaking book, Rethinking AIDS (1993), Dr. Robert Root‑Bernstein speculates that the prolonged latency might be a sign either that "co‑factors are necessary to trigger infection into full‑blown AIDS, and those with the most co‑factors died first" or that more and more people are successfully fighting off the infection and remaining healthy but inevitably carrying HIV antibodies for years or perhaps a lifetime.'


Recent evidence suggests that for all those who test positive for antibodies to HIV, there are many more who have been exposed to the virus but who appear to have successfully fought the infection via a cell‑mediated response without developing the antibodies that show up on standard AIDS tests. Dr. Gene Shearer of the National Cancer Institute has found that roughly 5 percent of 136 HIV‑antibody‑negative heterosexual men he tested showed such a cellular response to HIV, indicating that these people either contained the infection by disabling the virus or that they actually rid their bodies of the virus.


Science knows more about HIV than any other virus. The billions of dollars poured into research on HIV may not have produced any effective AIDS treatments, but this intensive research has generated great breakthroughs in our understanding of the mechanisms of virus action, molecular biology, and gene expression.


Following the 1994 AIDS conference at Yokohama, Dr. William Paul, the new coordinator of the U.S. Office of AIDS Research, called for a redirection of research -a return to the study of the basic science of the disease.


In 1982 Dr. Sonnabend put forth a multifactorial theory of AIDS in which he proposed that this new immune deficiency among urban gay men was caused by the combined effects of multiple exposures to infectious agents like cytomegalovirus (CMV), Epstein Barr virus, and to semen, which is itself immunosuppressive. Now that the theory that HIV alone causes AIDS appears to be insufficient to explain the disease or devise effective treatment, scientists are finally looking into the potential role of co‑factors.


Over the last thirteen years of the AIDS crisis, gays and lesbians have lost the ability to tolerate the insult of prejudice and, through a shared struggle, have discovered new reserves of strength.


Needle sharing is a principal means of transmission of AIDS. On August 9, 1988, Dave Purchase, a drug‑treatment worker in Tacoma, Washington, set up a TV tray on Pacific Avenue in Tacoma and began giving out clean needles for used ones. Townspeople repeatedly demanded that Purchase be stopped, but his program remains today. Purchase also helps coordinate the North American Syringe Exchange Network, which includes some fifty needle‑exchange programs nationwide.


With prophylaxis and aggressive specific treatment for opportunistic infections, people with AIDS have survived as many as ten years following diagnosis. Michael Callen, a pioneer of PWA empowerment, survived and thrived with full‑blown AIDS for twelve years. "If I had to describe in one word the characteristic common to all the [long‑term] survivors I interviewed," Callen wrote in Surviving AIDS (HarperCollins, 1990), "it would be grit" or "basically that they had hope."