The worst is over; The worst is yet to come – AIDS – includes related article
For many gay men, new drugs in the AIDS battle protect them from what was once certain death
Sometimes no news really is good news. On August 13 the banner headline of San Francisco’s Bay Area Reporter screamed in bright red ink, NO OBITS, when the paper received no AIDS-related death notices for an entire week–the first such nonoccurrence in 17 years. Michael Bettinger, a San Francisco psychotherapist with a large gay practice, remembers that “a surprising number of clients brought in the paper to talk about it.” After 15 years, during which death had become commonplace and expected, he says, the no-obits issue was “noted as a marker.”
After more than a decade of perpetual loss and mourning, the atmosphere in gay neighborhoods has changed. No longer do most gay men view everything through the filter of HIV. More and more, AIDS is seen as a chronic, not fatal, disease. What was once the main focus of gay life is now just one of many issues that occupy gay men.
Though the initial excitement over the new atmosphere produced a backlash from AIDS service groups warning against a premature rush to judgment, the most succinct summation of the current moment still comes from gay sex advice columnist Dan Savage, who wrote in February 1997 that “Even if AIDS ain’t over, the AIDS crisis is.” While AIDS practitioners and social service providers differ on what should happen next, most agree that we have entered a new chapter in the history of the disease, one that will pose new challenges–and may require very different approaches than in the past.
A dearth of newspaper obituaries is not the only sign of the change. For the first time since 1990, AIDS was not one of the ten leading causes of death, dropping from eighth place in 1996 to 14th in 1997. The National Center for Health Statistics at the federal Centers for Disease Control and Prevention reported in October that HIV-related deaths fell 47% from 1996 to 1997. Last year 16,865 people died from HIV-related illness, compared with 31,130 in 1996. For the 25-44 age group, the decrease was even more dramatic: The disease is now only the fifth leading cause of death, down from the leading cause in 1995.
New treatments have played a key role in the drop, but the number of AIDS deaths was already trending down. Robert Anderson, a statistician at NCHS, points out that 1995 was the peak year for AIDS deaths and that the increase from 1994 to 1995 was very small. In some large cities the numbers peaked even earlier–Seattle in 1993 and San Francisco in 1992. These declines in the death rate reflected the success of prevention efforts during the 1980s, which resulted in lower rates of infection, which ultimately led to lower mortality rates.
Even as public health officials welcome the decline in mortality, they offer a more nuanced reading of what the news really means. Helene Gayle, director of the CDC’s National Center for HIV, STD, and TB Prevention, has pointed out that “we may just be seeing a postponement of death. We want to be sure people understand these are not cures.”
Robert Wood, director of the HIV/ AIDS Control Program at the Seattle-King County Department of Public Health, notes that any interpretation of the new statistics should take into account the interplay between the incidence of new cases and the survival and mortality rates. In one commonly used model, says Wood, the total number of people living with AIDS can be thought of as a beaker of water; new cases of AIDS drip into the beaker through a pipe on top, while a valve at the bottom releases water from the beaker as people die of the disease. With new cases coming in at the top at approximately the same rate and the mortality rate declining, the number of people living with AIDS is growing–which has implications for public health and AIDS service policies. While there may be fewer people living with AIDS who are homebound and need meals delivered, for example, more may need job counseling or other services as they go on to live longer with the disease.
With such challenges, keeping the news good won’t be easy. Scott Hitt, chairman of President Clinton’s Advisory Council on HIV/AIDS and an HIV specialist in Los Angeles, believes the decreased death rate won’t be sustained without better access to health care. “Traditionally, we have not given good access to care for the groups getting infected,” he says. “Youth, people of color, and women do not have the same access to care as middle-class men.” More than half the new cases of HIV infection occur among African-Americans, even though they make up only about 13% of the U.S. population; AIDS is still the leading cause of death among African-Americans aged 25-44.
For those men who are HIV-positive, the change caused by dropping mortality rates is profound. “The shift is from dying with as much dignity and health as possible to living with minimum inconvenience,” says Robert E. Penn, author of The Gay Men’s Wellness Guide. For people who’ve experienced a sudden turnaround in health, that can mean a major adjustment. Michael Holtby, a licensed clinical social worker in private practice in Denver, says that people who “spent years preparing to die and went on disability now have to switch gears and think about going back to work.”
Of course, the emotional toll of the disease remains, even if it seems muted. For those who have not been helped by the combination therapies, says Michael Shernoff, a New York psychotherapist and editor of the book Gay Widowers: Life After the Death of a Partner, “it’s hard to be magnanimous for those people for whom it’s working.” People who have improved with the new drugs but have already lost partners and friends often feel “an intense sadness that the people we loved didn’t live long enough to benefit,” Shernoff adds.
And the challenges facing AIDS organizations have not lessened either. Some AIDS organizations have lamented that fund-raising is more difficult now that AIDS seems to be off the front burner. Eric Rofes, author of Dry Bones Breathe: Gay Men Creating Post-AIDS Identities and Cultures and a former executive director of San Francisco’s Shanti Project, believes those problems underline how groups need to rethink their missions. “When medical treatments result in a resumption of `normal life’ for most people with HIV, maybe the mission of AIDS service groups should shift,” he writes.
Rofes suggests that local AIDS organizations might broaden their mandate to serve a broader range of health concerns within the gay and lesbian community–including, for example, breast cancer care for lesbians. Or, Rofes adds, as middle-class white gay men become less central to AIDS, perhaps “gay men should simply relinquish ownership of the groups we founded in the 1980s.” For many gay men, that’s an idea that would have seemed inconceivable five years ago: to give up the disease that for so long seemed to define them.
RELATED ARTICLE: Deaths takes a holiday
For the first time, since the beginning of the AIDS epidemic in the early 1980s, The Bay Area Reported a gay paper in San Francisco, published an edition this summer that did not contain a single death notice.
The worst is yet to come
An unprecedented increase in unsafe sex among gay men is bad news for the future
Since the introduction of better AIDS treatments, researchers have been worried that safer-sex messages would lose their urgency. This was the year those fears came true. One study after another, with depressing consistency, showed that gay men increasingly have been letting their guard down when it comes to playing safely. The result? Alarming spikes in rates of HIV infection and, ominously, of other sexually transmitted diseases as well.
“We have seen increases in reported new infections that are unprecedented since the start of the epidemic,” says Ron Stall, associate professor of epidemiology at the University of California, San Francisco. “Before, we saw dramatic decreases in risky behavior or, at least, a flattening out. But the increase of unsafe sex reported this year was unheard-of.”
True, the problem is not as dire as it once was. A recently released study from UCSF found that half the gay men living in San Francisco in the mid 1980s were HIV-positive. The figure now is about 20%, in part because so many men have died. But the figures disguise the fact that among some groups, such as young gay men, the rate of new infections is appallingly high.
AIDS experts cite several factors, ranging from complacency and apathy to a rise in “barebacking” (anal sex without a condom) to a false sense of security brought about by two years of relatively rosy medical reporting on the epidemic. But if the reasons for the problem are clear, the potential solution is not.
Recent reports from cities such as Atlanta, San Francisco, and Fort Lauderdale, Fla., show young and minority gay men contracting HIV at unprecedented rates. And rates of anal gonorrhea, a reliable indicator of the occurrence of unsafe sex, have skyrocketed among gay men nationwide.
Things are even worse among minority gay men. The federal Centers for Disease Control and Prevention surveyed sexually active gay men between the ages of 15 and 22 in six urban counties. The research showed HIV rates of 8%-14% among African-Americans, 2%-11% among Hispanics, and only 2%-6% among whites.
Meanwhile, AID Atlanta, an AIDS service organization, says more men tested positive during the first eight months of 1998 than during all of 1997. The evidence is admittedly anecdotal: Gay men are more likely to get tested at AID Atlanta than at a public clinic, and at-risk men are more likely to get tested in any case. Still, the numbers are chilling. The group’s clinic reported 96 positive results from January to August 1998, or 3% of all those tested, compared with 82 positive results during all of 1997, or less than 2% of the total.
“The vast majority of these cases were among gay men,” says Mark King, AID Atlanta’s director of education. “We had a pretty good idea that people were becoming a bit careless out there, especially with all the good news from treatment combinations. This anecdotal data suggests our worst fears are coming true.”
To the south, in Fort Lauderdale, the Broward County Health Department shattered local illusions that gay men there were somehow better off than the stereotypical “party boys” in nearby Miami Beach. A survey published at the beginning of 1998 showed the rate of infection among gay men in Broward County to be at 20%, almost identical to that in Miami Beach. The rates were especially high among men under 30, who reported having unprotected sex with at least two partners within the previous three months–up to twice as often as older men.
“We have a group of youths coming into sexual peak now with misinformation that their AIDS will be taken care of,” Dilia Loe, director of an area gay and lesbian community center, told the Fort Lauderdale Sun-Sentinel. “It’s a frightening situation.”
The problem seems to be everywhere. The CDC reports that the incidence of gonorrhea in the United States among gay men rose 74% between 1993 and 1996, even while the overall incidence is falling. In San Francisco researchers found a 50% increase in reported unprotected anal sex among gay men. And the CDC reports that gay men being treated for STDs had HIV rates ranging from 4% in Minneapolis to 31% in Houston.
Once the HIV infection rates among gay men cross into double digits, the probability of an explosion of new infections grows exponentially. The outlook is made even worse by the evidence of wide-scale unsafe sexual activity. “If STDs are rising,” Stall warns, “then HIV has got to be right behind. So if you have a seroprevalence rate above 10%-15%, you’re just waiting for the other shoe to drop. It’s almost a mathematical certainty that more people will contract HIV.”
Stall notes three main causes for the trend. First, HIV disclosure between sex partners is rare. “If someone’s negative, it’s very unlikely they’d ask if someone else is positive,” Stall says. “Instead they might go through the medicine cabinet or ask questions to see if the guy works in AIDS. Some men are basing critical decisions on this stuff.”
Second, “treatment optimism” is causing people to lower their guard. Why? “The scientific answer is, I don’t know,” says Stall. “The commonsense answer is, if people feel less threatened by HIV, they’ll take more risk. But it’s probably not that simple.”
And third, there’s also battle fatigue. “People got sick of the 30 Years War too,” Stall notes. “But we’ve been living with this for a long time, and people are learning to cut deals with HIV. Living with the constant threat of infection whenever you make love is intolerable.”
And if the deal fails? “The prevailing thought is that it’s better to have lived a full life with some risk than to live a stunted life without any risk,” says Stall. Sadly, too many men may that, good treatments that kind of full life could turn a short one.
Shenitz is a New York City-based freelance writer and editor who writes about social and cultural topics.
Kirby is a regular New York Times.
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