June 21, 2001
Remembrance of an Epidemic
THE AIDS QUILT
AIDS at 20: The LONG CRUEL JOURNEY ISN'T OVER
By Karen Ocamb from FRONTIERS NEWS MAGAZINE
The late author Paul Monette used to say: "I don't just want a cure. I want all my friends back." It seems impossible today, as the world marks the 20th anniversary of the first article published on what would later be called Acquired Immune Deficiency Syndrome (AIDS), that not long ago my friends were dying as fast as water seeping through a clenched fist. I stopped counting at 150. But I am not a gay man of a certain age who lost a whole generation, who still chokes up wondering, "Why him and not me?" My survivor guilt is rooted in the shame of never having done enough, no matter how much I've done for how long. Nothing can mitigate that profound sense of powerlessness sitting like an empty, black hole in my soul.
And yet, ironically, never have I experienced such profound unconditional love and spirituality as I have sitting at the bedside of a friend whose extraordinary grace and dignity are perhaps the best measure of his too-short life. We are, as Holly Near once wrote, a gentle, loving people. It is perhaps a measure of our humanity that we have shared what we've learned, even with those who despise us.
It was late in 1979 when a young, thin penniless gay man walked into the STD clinic at the Los Angeles Gay & Lesbian Community Services Center. One of the approximately 70 men who stood in line each night to be treated for sexually transmitted diseases in the era of the mega-discos like Studio One; this man was very sick and covered with purple lesions. Health care worker Hugh Rice thought it was some strange dermatological problem. Six weeks later, the young man died in isolation at Los Angeles County Hospital. Only later did Rice realize that the young man had AIDS, the same disease that would eventually take him and millions of others.
On June 5, 1981, the federal Centers for Disease Control and Prevention (CDC) published the first report of Pneumocycstis carinii pneumonia (PCP) in five gay men in Los Angeles County. Three days later, they convened the Kaposi's Sarcoma/Opportunistic Infection (KSOI) Task Force to investigate the mysterious appearance of KS in cases such as the young homeless man at the Center. Almost one month later, on July 3, The New York Times published a small news story on the cases. The next day, Independence Day, the CDC published a report noting 36 more cases of KS and PCP in New York City and California, thus linking cases on both coasts. On Aug. 28, the CDC reported 70 more cases of KS and PCP, including the first heterosexuals and the first female. Worried, the CDC announced plans for a nationwide study. By mid-September, the CDC and the National Cancer Institute suspected the cytomegalovirus (CMV) as the most likely cause of KS. By December, the first cases of intravenous-drug users with PCP were reported. But the press dubbed the mysterious batch of diseases the "gay plague," or Gay-Related Immunodeficiency Disease (GRID).
That's the cold, hard start of it. In the months that followed, playwright Larry Kramer ("The Normal Heart") and six volunteers founded the Gay Men's Health Crisis in New York City and California Democratic Rep. Henry Waxman (spurred on by his gay aide Tim Westmoreland) held the first congressional subcommittee hearing at L.A.'s Center on the unfolding crisis. That resulted in the first front-page story in the Los Angeles Times. By the summer of 1982, the disease was dubbed AIDS.
Many gays expected relatively newly elected President Ronald Reagan, who supported them as California governor, to respond to the new mystery illness as if it was akin to the mysterious Legionnaire's disease. But no help was forthcoming. Frightened and angry, volunteers jumped into the breach. Matt Redman, Sheldon Andelson, David Wexler and Bill Meisenhimer held fund-raisers to create a Southern California AIDS Hotline. They found a "closet-sized" room at the Center and recruited Dr. Joel Weisman, co-author of the original CDC report with Dr. Michael Gottlieb, to train the hotline's volunteer staff. That hotline eventually became AIDS Project Los Angeles.
It wasn't long before AIDS became overtly politicized. "The poor homosexuals--they have declared war upon nature, and now nature is exacting an awful retribution," Patrick Buchanan, a former speech writer for President Nixon wrote May 24, 1983.
But while many gays were creating instant organizations and support groups, and lesbians were caring for the "untouchable" sick and dying, other gays were playing politics. Fear of conservative conspiracies to reverse post-Stonewall gay liberation and sexual freedom overwhelmed pleas to take public health measures such as closing gay bathhouses, where health officials believed the disease was sexually spread. Later, the American Journal of Medicine published a CDC study that linked 40 of the first cases to French flight attendant Gaetan Dugas, whom the researchers labeled "patient zero." As the late journalist Randy Shilts reported in "And the Band Played On," Dugas cavorted in a popular and profitable gay West Hollywood bathhouse called the 8709 Club. It was owned by one of the gay community's most prominent leaders, Sheldon Andelson.
On March 7, 1983, Kramer, called an "alarmist" by many, wrote "1,112 and Counting" for the New York Native. "If this article doesn't scare the shit out of you, we're in real trouble. If this article doesn't rouse you to anger, fury, rage, and action, gay men may have no future on this earth. Our continued existence depends on how angry you get," he wrote. TV talk-show host Phil Donahue took Kramer seriously, giving him a platform to warn people and examine the myths that terror of the unknown was creating.
On April 24, 1984, Secretary of Health and Human Services Margaret Heckler held a news conference with Dr. Robert Gallo and announced the discovery of the virus that causes AIDS. She predicted there would be an HIV test in six months and a vaccine in two years.
Not everyone breathed a sigh of relief. Along with the jubilation of creating the "gay mecca" known as the new city of West Hollywood came the nightmare of the fast-growing epidemic's impact. With three gays among the five city councilmembers, nondiscrimination measures on the basis of sexual orientation and AIDS were quickly enacted. The city also created a sexually explicit education and prevention program called West Hollywood Cares, based on L.A. Cares. Meanwhile, philanthropists like Duke Comegys raised money to remodel the Center's old clinic to deal with the increase in HIV/AIDS cases. Support groups like L.A. Shanti were dealing with the onslaught of massive grief, and counseling gays reeling from the intense homophobia of being outed by AIDS.
In 1985, the consciousness of AIDS seemed to explode. In March, the Food and Drug Administration approved the first AIDS antibody test which was soon used by the nation's blood banks. That April, the First International Conference on AIDS was held in Atlanta, and in June the National Institute of Allergy & Infectious Diseases created what became the first AIDS clinical trial groups. "Now no one is safe from AIDS," declared a LIFE magazine cover story.
On July 23, 1985, United Press International ran the following notice: "URGENT: ROCK HUDSON FATALLY ILL. URGENT." The July 25 disclosure by Dr. Michael Gottlieb that Rock Hudson had AIDS rocked the world. "There was a lot of confusion about AIDS and what caused AIDS," says Julia Salazar, then a counselor at the Center. "But I don't think it affected me until Rock Hudson died. A lot of people were getting tested. A lot of people were in crisis around AIDS. People panicked. That's when I started knowing a lot of people who were dying. It just seemed we were swamped. I was incredibly burned out. Eight hours a day I was listening to all these horror stories. It got to a point I just had to leave." Salazar later returned, running a Stop AIDS Program with activist Phill Wilson.
That Oct. 2, Hudson died. The next day, Congress allocated $70 million to AIDS research. Nine days later, the CDC published a study by the San Francisco AIDS Foundation showing a sharp decrease in "unsafe sexual practices" by gay men in that city during the previous six months. By now, gay men were terrified of sexual contact. A pall hung over the entire community. Candlelight marches and APLA and American Foundation for AIDS Research (AmFAR) fund-raisers featuring Elizabeth Taylor only lifted the spirit temporarily.
"The first wave" was a time when bravery and tears were exhausted. A diagnosis was a death sentence. Strapping young men who had never fallen in love wasted away knowing they would never experience happiness with another. Many were discarded by supposed friends who didn't know they were gay, and disowned by families who often swooped in after death, packed up the dead man's valuables and displaced the unprotected loved one. Many people with AIDS died alone in hospital wards attended only by masked-and-gowned doctors and nurses who treated them like lepers.
But gays devised coping strategies, creating the distinction between "family of choice" and "family of origin," and bringing a comforting smile or prayer to a stranger's bedside. Over the years, as the political battles intensified, gays and allies fought back. Kramer created the AIDS Coalition To Unleash Power (ACT UP), the direct action group that, among other groups and issues, used anger to press for compassionate release of experimental AIDS drugs, the lowering of drug prices, and more governmental funding for education, prevention and treatment programs.
But it was not until the elder George Bush administration that Congress enacted the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act that provided funding for the 16 hardest-hit communities. Only months later, on April 8, 1990, Ryan White died of AIDS. On May 20, President and Mrs. Bush participated in the International Candlelight Memorial and Mobilization by placing a lone candle in a White House window. That July, Bush signed the Americans With Disabilities Act, which bars discrimination against people with disabilities--including people with AIDS. Three months later, Lakers basketball superstar Earvin "Magic" Johnson announced he was HIV-positive. Appointed by Bush to the National Commission on AIDS, he resigned in September claiming the administration "utterly ignored" the commission's recommendations and "dropped the ball" on AIDS.
Amid the breathtaking anti-gay horror of the 1992 Republican Convention in Houston, Texas, where protesting AIDS activists were beaten by riot police, the daughter of one of Bush's major contributors addressed the convention as a straight Republican woman living with AIDS who identified with gays and others with the disease. Mary Fisher has continued her AIDS activism to this day.
Offering a beam of hope was Arkansas Gov. Bill Clinton, the dark horse Democratic candidate for president who seemed not only comfortable with gays, but moved by the tremendous devastation and pain caused by AIDS. During his Inaugural procession, people from the NAMES Project AIDS Memorial Quilt carried panels and handed out red ribbons.
While scientists were discovering that different drugs worked more effectively and longer in combination, the CDC announced that AIDS had become the leading cause of death among all Americans aged 25-44, and the third leading cause of death among American women aged 25-44. The United Nations reported more than 3 million new HIV cases worldwide in 1996.
But for all the respect afforded Sandra Thurman, head of the Office of National AIDS Policy, Clinton still fell short of delivering on his 1995 White House Conference on HIV/AIDS promise to "reduce the number of new infections each and every year until there are no more new infections." His own Advisory Council on AIDS issued a "no confidence" vote when the administration failed to lift a 10-year ban on federal funding for clean-needle exchange programs. In his letter to Clinton, Dr. Scott Hitt, chair of the AIDS panel, wrote, "The continuing delay by [Health and Human Services] Secretary [Donna] Shalala is appalling. Tragically, we must conclude that it is a lack of political will, not scientific evidence, that is creating this failure to act. This political treatment of a public health issue is killing people, and it must cease." Hitt noted CDC studies indicating that half of the 40,000 annual new HIV infections were a result of needle sharing, while thousands more were infected through contact with needle users. Additionally, Hitt wrote, since the populations most affected are people of color, the administration's silence is "particularly shameful in light of your Race Initiative's stated goal of ending health disparities among racial and ethnic groups." When Shalala finally agreed on the effectiveness of needle-exchange programs, she still did not call for the lifting of the ban, which remains in place today.
In the past two years, with the advent of protease inhibitors, worldwide attention has shifted to the terrible crisis in Africa, which the Clinton administration declared a "national security threat." One-third of the population of Swaziland, for instance, is HIV-positive. In addition to death, constant spread of infection, and lack of access to drugs, there is increasing concern about the destabilization of countries where people are too sick to work or farm, and AIDS orphans are raising themselves without socialization.
Meanwhile, in this country, after years of decline, HIV infection is up sharply, especially in young gay men of color. Researchers now warn of new drug-resistant strains of HIV among the newly infected. Although President George W. Bush has named Scott Evertz, an openly gay man with an AIDS background, as the new AIDS Czar, there have been no new policy directives.
Despite much discussion about the promise of an HIV vaccine, there is no cure around the corner. The people who are now infected with HIV must hope that new drugs and new cocktail combinations are discovered to prolong their health, making AIDS a "manageable disease."
But an epidemic is like a fire, says Dr. Don Francis, the epidemiologist hero of "And the Band Played On," who is now working on a vaccine. "The earlier you get [there] before the flames are rampant, the better off you will do. And that is especially true of long incubation diseases where the smoldering and spread has occurred a lot more than you realize when you see the smoke. And so the inability to recognize the responsibility that the government has for public health, sets up a lack of response at the government level."
And any lack of response makes it even harder to catch up with a constantly mutating virus, no matter how much a community cares.