feature
The changing face of AIDS
Where we are and where we’re heading
Published Thursday, 27-Nov-2003 in issue 831
On December 1,the world focuses in a special way on HIV, AIDS and all those affected by the virus for World AIDS Day 2003. It is an ideal event for reflecting on the ways HIV has affected and, in some ways, transformed the gay and lesbian community as well as the wider world.World AIDS Day also provides an opportunity to see how far we have come in treatment and understanding and how far we still have to go in terms of treatment, a vaccine and even the most basic issues of prevention.
We’ve come so far
When HIV infections and full-blown AIDS were first identified — as “gay cancer” or later GRID (Gay-Related Immune Deficiency) — in gay population centers in the early ‘80s, it was both mysterious and deeply frightening. other than the fact that gay men were affected to a much greater degree than other parts of the population, almost nothing was known about the disease, except that it appeared to be infectious. While the mystery of the cause of the new disease was cleared up with the isolation of HIV as the infectious agent by scientists at France’s Pasteur Institute in 1983 and later by Dr. Robert Gallo at the National Institutes of Health, the fear and horror of the disease didn’t dissipate as some neighborhoods and communities lost almost entire generations of gay men.
In many ways, the early days of the HIV epidemic seem like the distant past. In large part, this is because of the great advances that have been made in treatment for infection. Beginning with the introduction of AZT in 1987, followed by the introduction of nucleoside reverse transcriptase inhibitors in 1991, the first protease inhibitors in 1995 and non-nucleoside reverse transcriptase inhibitors a year later, there has been a steady improvement in the treatment options for those living with HIV and AIDS.
The great hope is still for an AIDS vaccine. While a number of possible vaccines are in the testing pipeline — and there has even been some hope that the smallpox vaccine might be effective against HIV — the vaccines that have gone to trial haven’t been shown to prevent HIV infection. Most recently, AIDSVAX, a possible vaccine that had shown some promise, failed to be shown to be effective in a human trial completed in November in Thailand. If there is going to be an effective AIDS vaccine, it is still a number of years in the future.
Even while treatment has improved and there has been at least some effort on the vaccine front, there has also been a huge drain on the financial resources directed towards HIV/AIDS treatment.
As Delores Jacobs, PhD, executive director of The Center, puts it, “One of the greatest challenges produced by our treatment success is we have been successful in extending the lives — and often the health — of many with HIV/AIDS; however, those treatments are expensive and resource-intensive.”
Even as treatment has become more effective and simpler, allowing the HIV-positive to live longer, healthier lives, the rates of infection for younger gay men have begun to rise again, in some cases dramatically. This challenge is made more severe by the choice of government and other agencies to cut HIV/AIDS funding in order to meet budget shortfalls. To take one example, before leaving office, Gray Davis restored funding to a statewide program to fund blood tests that are vital to correctly prescribing and adjusting drug cocktails. In spite of this $7 million funding coup, the director of the California Department of Health Services refused to reimplement the funding, leaving it up to the new administration to decide what to do. Since one of the goals of the new governor is supposed to be to balance the state’s books, it is unlikely that this funding will be restored.
At the national level, the Bush administration has pulled funding from prevention and educational programs that it believes are too sexual. It has also demanded an emphasis on abstinence as the only correct policy in school-based HIV and STD prevention programs, echoing the “Just Say No!” campaigns of the Reagan years — although there is little or no evidence that these programs are effective. In effect the Bush administration has allowed its AIDS policy to be driven by ideology rather than science or practical concerns about what programs work.
About these demands of the current administration, Jacobs says, “Prevention messages take much professional expertise to craft in ways that a target community will respond to.… The imposition of one set of messages on all people without appropriate concern for whether it will actually work means that it will likely work for very few. Professionals should construct these messages…. To do anything else is a waste of taxpayer funds.”
And we have so far to go
In the last five years there has been a steady decrease in the number of AIDS-related deaths in the United States. Surely much of the credit must go to better and newer drug therapies. The advances in treatment are amazing, but at the same time are one of the factors sometimes blamed for another, less rosy side of the current situation. Even as treatment has become more effective and simpler, allowing the HIV-positive to live longer, healthier lives, the rates of infection for younger gay men have begun to rise again, in some cases dramatically. In the period from 1999 to 2002, the number of new HIV infections increased each year among men who have sex with men, according to the Center for Disease Control’s (CDC) 2002 AIDS Surveillance Report. During the same period, the number of new infections steadily decreased among the other highest risk group, injection drug users. And, while there was a slight increase in the number of people infected through heterosexual sex — less than the increase among gay men — in 2002, men who have sex with men still accounted for 44 percent of all new infections. Clearly, HIV/AIDS is still a disproportionately gay problem in the United States, and it’s one that we aren’t on the cusp of solving.
The trend of increasing HIV infection has been realized in San Diego as well. According to Jacobs, HIV infection rates have been increasing for San Diego’s gay men.
“While we don’t have great or reliable data in some places, here in San Diego HIV infection rates among men who have sex with men, particularly men of color who have sex with men, are beginning to rise again,” Jacobs said. “That suggests that prevention efforts are beginning to be less effective than they were in the past.”
One explanation for the renewed increase in infection rates among gay and bisexual men is the apparent manageability of the disease. While in the early days of the epidemic a positive HIV test was often looked upon as a death knell, drug therapies, cocktails and the improved treatment of opportunistic infections have meant that the number of AIDS-related deaths each year has been on a steady decline at the same time that infections and infection rates have been increasing. While the CDC estimated that there were nearly 300,000 people living with HIV in the United States at the end of 2002, there were only 16,371 AIDS-related deaths in 2002. That’s a lot of people dying, but it’s also a lot fewer people dying than are living with the virus — and it’s nothing like the mortality rates of the early years of the epidemic.
This has led some to blame the gay community’s emphasis on the increased ease of living with HIV/AIDS with part of the failure to rein in new infections. They argue that because people are living longer, because there are drugs to treat HIV/AIDS and because the media, and particularly those advertising HIV/AIDS medications, picture mostly those who are relatively healthy, attractive and suffering no apparent AIDS-related illnesses or drug-related side-effects, men — and especially younger men — have ceased to worry much about becoming infected. The more that HIV/AIDS appears to be a manageable disease and the more the HIV drug ads look just like ads for heartburn or headache drugs, the less inclined people are to protect themselves and attempt to prevent infection. Most recently, Michelangelo Signorile — reviving an argument he began making in the 1990s when he was editor of The Advocate — made this argument in New York’s Newsday in August, sparking the publicization of a heated debate about the right kind of community prevention strategies.
Signorile praises the recent ad campaign of San Francisco’s Stop AIDS Project, which has created billboards with photos and themes such as facial wasting, night sweats, diarrhea and fat distribution resulting from protease inhibitors. He praises this effort, asking why there isn’t more of the same sort of program.
“The eerie absence of such reality advertising has taken a toll. According to the latest reports, many gay men, young and old, have given up on safer sex,” according to Signorile. He lays blame mostly at the feet of the drug companies who “have hawked images of chiseled men climbing rocks or flexing as hot poster boys, ready to take on the world.” The longer lives of men living with AIDS together with these marketing campaigns have made HIV/AIDS seem like no big deal, according to Signorile. In addition, he believes that the use of testosterone therapy has made HIV-positive men not only healthier, but also closer to one of the commonly identified gay ideals, the muscle man.
“They see a muscle stud on the street who, they’re told, is HIV positive, and they see a handsome man in an ad proclaiming how wonderful his life has been since he was diagnosed. Suddenly, forgoing condoms in the heat of the moment becomes a lot easier,” Signorile writes.
Jacobs agrees with some of the feeling behind Signorile’s argument.
“I understand his comments, given that many of our men under 40 did not witness firsthand the death and devastation created by HIV/AIDS,” she says of Signorile. “Add to that the marketing messages of some pharmaceuticals that suggest treatment is as simple as a pill and that people won’t really experience diarrhea, wasting, nausea, etc., and we have a message that suggests that maybe this disease isn’t really a terrible thing.”
[I]n 2002, men who have sex with men still accounted for 44 percent of all new infections. Signorile’s prescription for new prevention efforts is more controversial. In praising San Francisco’s program, he is suggesting this as a strategy for HIV prevention programs across the country.
Even if the wrong message has been getting across to young gay men, however, Jacobs for one is not sure that Signorile’s suggestion is one that will work.
“[W]e have to be cautious. Most direct fear tactics don’t work in public health prevention efforts. I don’t think prevention is as simple as telling people they will get sick and die,” she says.
Barebacking
Whatever the correct strategy may be, it’s clear that current prevention strategies aren’t reaching at least some members of the gay community. As a study at the University of California, San Francisco showed in 1999, unsafe sex appears to be pervasive in the gay community.
The author of the study, Dr Maria Ekstrand of UCSF’s Center for AIDS Prevention Studies, reported the findings, saying, “Occasional high-risk sex has now become pervasive among gay men in San Francisco.... It is apparent that many gay men find it difficult to maintain safe sex practices over the long haul.”
So something is going wrong with prevention. This is clear from the rise — or at least the increased prominence — of barebacking, or consciously chosen, and often celebrated, unprotected anal sex. This isn’t just “forgoing condoms in the heat of the moment” but deciding before there’s any heat that condoms won’t be used.
It’s hard to know exactly how many gay men choose to forgo safer sex, and it’s impossible to know all the reasons people might have for barebacking. However, we might be able to get some handle on the number of men choosing unsafe sex through looking at some of the types of online sites for meeting other men for sex, and what men say in their profiles.
There is currently at least one hook-up site dedicated solely to people interested in barebacking, www.bareback.com. This site alone has more than 400 members in San Diego. Another site, www.barebackcity.com, catering to the same interests, had a comparable number of members in the San Diego area before it was suspended for financial reasons. It’s almost certain that there was a high level of overlap between these two sites’ members, but the relatively large number of members in San Diego alone demonstrates at the very least a large contingent of the gay community that has decided for various reasons to abandon the safer-sex message and practices developed in the early days of the epidemic to prevent new infections. This can be seen also through profiles men post on other sex sites, even when they are not primarily dedicated to barebacking. This is not to say either that barebacking is entirely a phenomenon centered around internet hookups or that all internet hookups are bareback hookups; it’s simply that the relative anonymity of the internet allows men who are interested in barebacking to be more open about their interest with less fear of immediate judgment. The reasons and arguments that barebackers give are as varied as anything else in the gay community. Some, echoing the webmasters of bareback.com, argue that since there’s no such thing as perfectly safe sex in any case, barebacking amounts to an acceptance and realization of the risks inherent in sex and anal sex in particular. Others reflect arguments made by author and education professor Eric Rofes. He argues that since infection rates are not as high in urban centers as they were in the worst days of the epidemic — as many as 50 percent of all gay men in the gay communities of New York and San Francisco were thought to be infected in the early days of the epidemic — there’s simply not as much risk involved in barebacking as there once was. Rofes also argues that because people no longer necessarily die within a year or two of becoming infected with HIV, it makes sense not to take it as seriously as we did in the early days of the AIDS crisis. In this way Rofes’ argument validates Signorile’s concerns that emphasis on the advances that have been made in HIV treatment have undermined prevention efforts. Among the reasons people give in conversation for barebacking are that they are already positive and so unconcerned with infection or, mirroring many of these arguments, that if they do become HIV-positive they will be able to manage the illness and lead full lives. But there are others who don’t see any real risks in barebacking. As “Tim” stated, he only barebacks with guys who are negative.
“I just got tested a week ago so I know that I can’t give it to anyone,” he said.
Another man, “Mark,” told me more or less the same thing. “I don’t always bareback; sometimes I play safe. But if I know the guy and know that he’s negative then I just like it better if it’s raw.”
While these are only two examples, many more like them, along with profiles that advertise for bareback sex but only with negative partners, make it seem likely that increases in HIV-infection that are resulting from unsafe sex aren’t from the supposed phenomenon of “bug-chasing,” which was the subject both of a documentary called The Gift and articles in Rolling Stone and other parts of the mainstream media recently. Instead they are more likely the result either of failing to take precautions in the heat of the moment or the judgment that there isn’t really a reason to worry too much about safe sex or the not uncommon feeling that there is simply something more personal and connected about unprotected sex. As another man, “Jay” told me, “What I really want to find is a man that I can bareback with, because that’s just so much more intimate than condoms.”
Among the reasons people give in conversation for barebacking are that they are already positive and so unconcerned with infection or, mirroring many of these arguments, that if they do become HIV-positive they will be able to manage the illness and lead full lives. Discrimination
There have also been strides made in acceptance of those living with HIV and AIDS. But in this arena, too, the strides left are at least as great as those that have been made. HIV-positive children are no longer forced out of schools or shunted to separate restrooms, government officials don’t wear rubber gloves when meeting gays and lesbians — when they do meet with members of our community — and being HIV-positive is no longer a necessary bar to employment.
However, discrimination against people living with HIV/AIDS is still a very real factor in their lives. It’s hard not to see that the very kinds of prevention campaigns that someone like Signorile advocates will make at least some forms of discrimination more prevalent, by identifying and emphasizing noticeable physical side-effects of HIV and treatment. Discrimination can take subtle forms, from avoiding people one suspects or knows to be HIV-positive in social settings and choosing where to sit or which bartender to go to based on perceived status, to continued employment discrimination, through the United States’ government’s continued ban on the entry or immigration of HIV-positive people into the United States. Testing HIV-positive, even if the virus was contracted in the United States, is still grounds for deportation.
In recent weeks, one of the most prominent discrimination cases has involved the French-Canadian performing troupe Cirque du Soleil. In spite of being cleared by the troupe’s doctors as healthy and no risk to other performers, gymnast Matthew Cusick was fired from Cirque du Soleil’s Las Vegas show. The company deemed its decision as the socially responsible thing to do, citing its concerns for the safety of other performers and audience members, even though there are no documented cases of HIV transmission between participants even in contact sports. The result of the federal lawsuit Cusick has filed will tell us much about how far we have come in HIV-positive employment discrimination.
Dissent
Although in the minority, there are also members of the gay and lesbian community as well as the wider community who are skeptical both that there is any connection between HIV and AIDS and that there is really such a disease as AIDS at all. On the world stage, this minority has been represented by former South African president Thabo Mbeki. Among other things, such as convening AIDS policy panels heavily influenced by AIDS dissidents or deniers, he also slowed pregnant mothers’ access to AZT, in spite of evidence that it could help prevent the spread of HIV from mother to child.
At the local level, AIDS dissent is represented, among others, by HEAL San Diego (Health Education AIDS Liaison San Diego). Members can be seen holding signs and passing out flyers at events like AIDS Walk and on government-access television, in effect saying that AIDS is a myth or that AIDS is over. HEAL and other dissenters argue that we don’t have enough evidence even for the existence of AIDS, claiming that there is nothing more to AIDS than the opportunistic infections that in fact harm people. For instance, they claim that at best there is a correlation between being HIV-positive and contracting AIDS, but no real evidence that HIV causes AIDS. For instance, HEAL suggests, through rhetorical questions, that AIDS deaths are really the result of HIV medication pushed by greedy pharmaceutical corporations, recreational drug use or the effects of rampant poverty in the underdeveloped world.
The more that HIV/AIDS appears to be a manageable disease and the more the HIV drug ads look just like ads for heartburn or headache drugs, the less inclined people are to protect themselves and attempt to prevent infection. On its website, HEAL asks, “Is the whole edifice of the contagious AIDS theory based on excuses made by an industry unwilling to question an inaccurate, yet profitable, hypothesis? Was the theory of healthy carriers merely an excuse for the fact that no direct link existed between ‘risky’ sexual activity and illness? Is the ‘mutation’ theory of HIV just an excuse to explain the failures of the pharmaceutical drug regimens? Is the theory of ‘failing’ drugs an excuse to cover up the fact that the drugs eventually cause illness and death?”
On the one hand, dissenters claim that what they are really striving for is “to educate the public about alternative and holistic approaches to defining and treating the syndrome called ‘AIDS,’” to quote HEAL’s mission statement. They claim that, “debate and open inquiry are fundamental parts of the scientific process and should not be abandoned to accommodate the HIV hypothesis.” At the same time, they seem wholeheartedly to reject “the HIV hypothesis,” arguing that whatever has happened to our community and the wider world must surely not be HIV/AIDS. And there’s the very real danger that their views — if they’re wrong, as most scientists believe they are — are just the sorts of beliefs that will encourage ever more people not to take precautions when having sex.
The wider picture
Of course, for all the popular identification of AIDS with the gay community, infection rates are also increasing outside our community. In 1998, UNAIDS, the United Nations AIDS agency, estimated that there were at least 30 million people living with HIV worldwide, with 16,000 more people becoming infected every day. The areas of greatest concern, according to UNAIDS and the World Health Organization, are the African Continent and Asia, particularly India and China. And, since many of the areas of greatest concern are poorer parts of the world, the sheer expense of HIV/AIDS medications becomes an overwhelming concern. As Jacobs notes, treatment itself creates the problem of people in poor or wealthy areas who live longer and require longer-term, expensive treatment.
Even within the United States, according to the CDC’s Surveillance Report, infection rates continue to grow in the heterosexual population, with 35 percent of new infections in 2002 the result of heterosexual sex. So, while HIV/AIDS still affects the gay community to a greater degree than any other single part of the population, its effect on our community is only one part of a much bigger picture. Still, there’s no doubt that its effect on our community will continue to be felt in the years to come.
As Jacobs states, “HIV/AIDS will continue to present a serious challenge to our community. Finding lifesaving treatments and medicines and the funds to sustain them is a challenge we will face into the next few decades, and as the virus spreads and rates of infection increase, the challenge will grow ever larger.”
It may just be that the way that our community continues to address and respond to this challenge will be the true test of how much of a community the lesbian and gay community really is. ![]()
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