AIDS, still

December 1 is World AIDS day, and in my queer world, the date is usually marked in some way. But this year, it seems especially salient. For one thing, I’ll be hosting a radio show about HIV/AIDS on December 2 on the program I mentioned here before, “Outsources,” which airs Mondays at 6:30 on KGNU. (88.5 FM. Listen in!).  Also, we just saw a movie about the early years of the AIDS epidemic—“The Dallas Buyers’ Club,” which reminded me of a documentary on that period that we saw early this year—“How to Survive a Plague.” These things all come together in my mind today—the films, the show, the awful reality of what AIDS has been and still is, despite its general disappearance from the front pages.

I realize that some folks aren’t too aware of the trajectory of HIV/AIDS. Not everyone was old enough to follow the story back when it began in the early 1980s, and many who were may have lost track of the account. So I think I’ll start with a quick primer: call it HIV/AIDS 201 (for 101, check out the hyperlinks in the Wikipedia entry, which will take you to all sorts of information). I’m hoping this doesn’t seem like a lecture. I actually mean it to be the story of a part of our lives. It’s the story that’s running through my mind today, on World AIDS Day, 2013.

It’s hard for me to believe that the HIV/AIDS pandemic is now over 30 years old. It seems so much more recently that I first heard of this strange disease that seemed to be affecting gay men. On the coasts, mostly—New York and San Francisco. The first case in the US was identified in 1981. Initially, no one knew quite what to make of the swirl of unusual symptoms that were suddenly appearing—uncommon cancers, uncommon forms of pneumonia, heightened susceptibility to all manner of infections. Soon, it was clear that the disease, whatever it was, appeared to be most common among gay men. So it was called GRID—gay-related immune deficiency. Its association with homosexuality and later (to a lesser extent) with IV drug use set the social trajectory of the illness. The disease emerged into a culture already laced with virulent homophobia, and it quickly became fodder for that homophobia. 

The stigma associated with homosexuality was so intertwined with the disease that AIDS was virtually ignored—or actively dismissed as unimportant—by society at large, even as scores and then hundreds and finally thousands of people died. Then-President Ronald Reagan was famously silent for six years as the epidemic raged. By the time he finally mentioned AIDS in May of 1987, nearly 21,000 Americans had died from complications of AIDS. And as we watched (or not) the disease’s progression in gay and bisexual men, HIV/AIDS was also thriving in other communities—especially among IV drug users and their partners (of whatever sexual orientation and gender identity) in this country, and largely among heterosexual people elsewhere around the world. By the time Reagan broke his silence, the disease had been identified in 113 countries, with more than 50,000 cases worldwide.

Reagan’s surgeon general, Everett Koop, who would have spoken out, was silenced “because,” he said, “AIDS was understood to be primarily in the homosexual population and in those who abused intravenous drugs.” The president's advisers, Koop said, argued that “They are only getting what they justly deserve.” This refusal to care was a stark indication of the intensity of the stigma that hung off of homosexuality and IV drug use: they were so reprehensible that they warranted a death sentence. In this climate, it’s not surprising that many people weren’t out to their families. Now, countless men came out to their families by telling them they were dying of AIDS.

The silence and the stigma persisted as a generation of gay and bisexual men watched their friends and lovers die around them, as did uncounted IV drug users, people who received unsafe blood by transfusion, people who had sex with anyone who had the virus from any source, people who had sex with people who had sex with anyone who had the virus … the list was monstrous, and the potential for it to grow on and on, unimpeded, was huge. Finally, it was not our government but folks on the street who stepped up, spoke out, yelled and protested and organized. The LGBTQ community and many straight folks began to care for those who were infected. Where the government failed, home-grown clinics, personal-care and food-delivery services, buddy programs, cadres of volunteers and friends showed up for the people who were dying. The LGBTQ community had never been so united. That period—the 1980s and beyond—remains a monument to what communities can do. Among the groups that sprung up were the Gay Men’s Health Crisis, the first major grassroots AIDS-related group, and ACT UP (the Aids Coalition to Unleash Power), whose motto was “Silence = Death.” Such groups became the strong, insistent, irreverent voices for all the folks who were unheard, using grassroots organizing, learning everything they could about the HIV virus and AIDS, being rowdy and misbehaving in staid and proper circles.

Finally, others got on board. Slowly, drugs were approved—often under extreme pressure from grassroots activists—and slowly, those drugs got more effective and less toxic. What had been a virtually certain death sentence eased its grip, and people began living longer with HIV. Then, in the early 1990s, new drug “cocktails” arrived on the scene, seeming to make of HIV/AIDS a lifelong health condition instead of a short path to early death. These drugs were still too toxic for some people, and millions of people around the world who could benefit from them couldn’t afford them or couldn’t manage the grueling regime and precise schedule they required. But for many, the future changed.

It is these most awful of days, months, and years that were depicted in both the documentary (“How to Survive a Plague”) and the movie (“The Dallas Buyers' Club”) I mentioned above. The deep fear, the desperation, the sense of total abandonment, the wrenching sadness of loss after loss after loss, the coalescence of a community under siege. The documentary is about AIDS activism—especially the work of ACT UP, of sympathetic docs, of the allies who stepped up, and especially of the LGBTQ community (and its allies) that saved its members and in the process birthed itself. The other film is about the same epidemic, same period, same activism, but this time featuring an individual instead of a community, a lone heterosexual man who got AIDS, wanted drugs for himself, and began a crusade to provide them for others (and to make a lot of money in the process)—and also to insist that the government stop acting as an obstruction and start caring for its citizens. Both are, from different perspectives, inspiring reminders of, to paraphrase Margaret Mead, the power of a few committed people to change the world. You’ll be glad you saw them.

By the mid-1990s a corner seemed to have been turned, and many people—including those most visible to mainstream America—went back to living. The drugs continued to get better, and official, government-sponsored systems emerged to provide medication and services to people living with HIV/AIDS. The newspapers were no longer filled with news of AIDS, and the obituary columns weren’t filled with men who died young. The funerals slowed, the persistent terrible news waned. People who had quit their jobs returned to work. Relationships seemed possible again. Life seemed possible again. On the other hand, paradoxically, this change was complicated for some. People who had spent or given away everything and cashed in life insurance policies assuming that they would die now tried to figure out how to recover financially. People who had stayed with a partner rather than abandon him (or sometimes her) as he (she) was dying had to decide anew whether to stay. Organizations that were created to provide services and political clout saw their support and their influence decline as grassroots services were replaced by “official” ones.

Along with these challenges, the stigma lived on. LGBT people, whatever their HIV status, and people with HIV/AIDS, whatever their gender identity and sexual orientation, still struggled with stigma. Still today, HIV/AIDS is seen as a sign of moral failure. More than any other disease I can think of, there is great shame attached to HIV/AIDS—as if the disease weren’t enough of a burden. Which brings us to this year, World AIDS Day, 2013.

The good news is that we have several important gains to celebrate these days:

• New guidelines issued by the US Preventative Services Task Force encourage routine testing for all adolescents and adults 15 to 65 years of age. More testing means earlier detection (currently, about 20% of adults in the US who are infected don’t know it because they’ve never been tested), earlier life-saving treatment, and reduced transmission resulting from a lack of information. 

• The drugs keep getting better and easier to manage, and people are living longer. 

• With the Affordable Care Act, medical care will become easier to get and more affordable for folks in this country. 

• Although there is no “cure” on the horizon, a so-called functional cure has been achieved in an infant. That means that the virus is barely detectable and is not replicating, despite the fact that the child isn’t receiving drugs any longer.

But in the midst of this tremendous sense of relief, this easing of tragedy and terror, we mustn’t lose sight of all that remains undone in the fight against HIV/AIDS. Here’s a short list. We’ll address some of this in Monday’s  show. 

• Even as HIV/AIDS has become less devastating (at least for the sub-group mentioned above) the stigma associated with HIV/AIDS persists. Largely because the disease in its earliest days was so closely associated with groups that were already stigmatized—gay and bisexual men, other men who have sex with men, IV drug users—this stigma grew strong and deep from the beginning. It persists for infected people both within and outside those groups.  

• The “cocktails” have been hugely successful in transforming HIV/AIDS from a death sentence to a manageable condition—among people who have access to the drugs and who can afford them and tolerate them. However, as the people who were most vocal have become less visible because they are in less urgent need, attention to AIDS has waned, as has funding for AIDS-related research and services.  

• For a whole host of reasons, we are currently seeing an increase in the number of gay and bisexual men who engage in high-risk behaviors—a figure that was lowered, painfully and slowly, during the early years of the epidemic. Many factors probably contribute to this rise. The young men in these communities didn’t live through the worst of the epidemic and have no personal sense of how awful it was. Besides, they think, new drugs have made of HIV/AIDS “just a condition” that can be managed with meds. Some folks have suggested a role for internalized homophobia—the self-hatred that arises when stigma is incorporated into your own self-concept. Another factor may be that men are choosing sexual partners with the same HIV status as their own—or so they believe. Finally, some research indicates that the newest drugs also protect against transmission of the virus, so people may think they needn’t worry. None of these reasons is without its drawbacks. And despite the new drugs, unprotected sex still increases the risk of contracting HIV/AIDS, and HIV/AIDS still has massive consequences. The drugs continue to have serious side effects, and growing old with HIV/AIDS comes with serious costs. Recent research has found that people who have been on the drugs for a long time have higher incidences of cancer, heart disease, diabetes, dementia, depression, and other major health problems. They also die younger, on average, than their uninfected peers. This is not to berate people who have the disease, but to point out that the drugs have not turned living with HIV/AIDS into a non-issue, a trivial inconvenience, a consequence of such little importance that it needn’t be factored into sexual decisions. 

• The communities in the world who are most severely affected by AIDS are not the sort of mainstream American gay and bisexual men who became the face of AIDS in the US in the 1980s and 1990s. They are IV drug users of all genders and sexual orientations, people of color (ditto), people in other nations (especially Africa), and poor people everywhere who do not have access to adequate health care. In this regard, the Affordable Care Act will help by (theoretically) providing access to adequate and affordable medical care for US citizens. That, of course, still leaves out people everywhere else in the world, as well as people in this country who don’t connect with health care providers for any reason. Among the reasons might be lack of education, poverty (you still have to connect with ACA, which is hard if you have no transportation and no internet), and that persistent, painful bugaboo: stigma. Fear of judgment. 

• Among the groups with high rates of infection are the children of mothers with the virus. Recent research has found ways to reduce this transmission, including administering drugs to the mother during pregnancy and to the infant after birth and then foregoing breast feeding. With appropriate treatment, the risk of mother-to-child infection can be reduced to about 1%. But it’s not hard to figure out that people in some of the most heavily infected areas of the world do not have the luxury of following these procedures. AIDS education is non-existent or minimal, drugs are difficult or impossible to acquire, and breast feeding is often both culturally and logistically the only option.  

So, more than 30 years into the epidemic, it’s easy to find reason for great hope and reason for great concern. Personally, my greatest concern is the risk of apathy, indifference, complacency. In contrast to the 1980s, it’s easy to understand why 2013 looks great for many in the LGBTQ community. But we’re not done, and other groups are in far worse shape than those in the American mainstream. We just can’t just stop. 

My greatest hopes lie in three domains. The first is the tremendous progress now being made in the medical field. Given what researchers are now learning in non-AIDS-related areas (epigenetics, especially), major continuing progress in treatment seems virtually certain. I hesitate to mention words like “cure” and “vaccine,” but we’re talking about hope here. My second great hope lies the gradual downward trajectory of the stigma associated with HIV/AIDS—at least in some segments of the population in this country. Clearly, HIV infection still comes with a load of stigma. But as attitudes toward LGBTQ people improve, some part of that stigma may slowly wither away. My hope is that over time, just as the stigma of HIV/AIDS was grew from and then reinforced homophobia, the slow decline in (at least some forms of) homophobia may usher in less judgmental attitudes toward HIV/AIDS infection. My third great hope lies in the work of folks like Bill and Melinda Gates and U2 singer Bono, both of whom have worked long and hard (and spent a lot of their money) to bring understanding, education, and treatment to some of the poorest and most heavily infected regions of the world.

It’s common in the queer community to mark the history of our movement by reference to Stonewall, the 1969 uprising that birthed the contemporary “gay rights” movement—events are marked as “before Stonewall” and “After Stonewall.” But the gay and bisexual men I know mark their history in another way. Events are remembered and coded as “before AIDS” and “after AIDS.” 

HIV/AIDS changed the world, and it’s not over yet. I hope we don’t forget that.