From the Frontlines of the War on HIV & AIDS
I recently told my mother that I was HIV-positive. I had wanted to tell her for years, wanted to be honest and open with her about all aspects of my life. I hated the fact that it was a secret, that she didn’t know, but there never seemed to be a good time. Some other family issue would take precedence, or the topic was awkward, or maybe she just seemed too happy and I didn’t want to spoil everything with bad news. I knew deep down that I didn’t want to deal with the fallout, to shore up her disappointment, to calm her fears and correct her misconceptions. When I finally opened up, she reached out to hug me and calmly said, “I always thought you might be.”
What she meant was that I fit the profile. I am a white gay man in my mid-fifties, and have lived in San Francisco’s Castro neighborhood for almost twenty-five years. I am the type of person who gets HIV, so she wasn’t surprised. I didn’t need to explain that I was healthy and, that so long as I continue to take my medication, I can expect to live out a normal lifespan. She wasn’t scared by HIV & AIDS. Like most people, she didn’t see it as a “big deal” anymore.
As best as I can tell, I caught the virus sometime in 2009. HIV has been part of me for almost a decade now. The diagnosis was like a hammer blow to the chest. And, in the middle of the emotional recoil, one question persisted: How did I let this happen? I had all the information. I knew how the virus spread. After all, I became sexually active in the early ‘80s, when AIDS hysteria peaked and condoms were an essential item in every gay man’s night kit. This was back in the days when having HIV meant becoming visibly sick, being actively shunned and, in most cases, dying. I saw AIDS in the faces of my friends. I saw how it ravaged my community and hollowed out a generation.
Happily, that’s no longer true. We don’t see the walking corpses shuffling desolately through the Castro, Greenwich Village or Silverlake. We don’t count the funerals we have attended in the past month. We don’t keep our black clothes freshly dry-cleaned, just in case. We don’t panic at the appearance of a bruise on our body and fear the worst. HIV medicines have made the disease manageable and tamed the monster. Just like my mother, most of us are no longer scared by the disease. So, is the crisis over? Have we beaten the epidemic? Are we in a post-AIDS era?
Anti-retroviral therapy (ART) has been a game changer for those of us living in what we affectionately term the “gay ghettos,” both as treatment and as prevention. According to CDC statistics, overall infection rates are declining nationally, and both the number and rate of deaths of those with HIV are falling. With early diagnosis and treatment, most newly diagnosed people who take the pill daily will show undetectable viral loads and will have a normal life expectancy. Side effects are manageable, and the overall impact on one’s quality of life is minimal. A consensus view seems to be emerging that an HIV-positive person who adheres to the drug regime and maintains a stable undetectable viral load cannot infect others. The slogan U=U, undetectable = uninfectious, is finding currency within the gay community, and treatment as prevention (TasP) has become an essential part of the public-health armory.
It’s important to remember that this is not a cure. Even in a fully suppressed person, the virus remains dormant in the body’s reservoirs (brain, lymph nodes, blood and digestive tract). Inactive for years, it can rebound and lead to AIDS if the treatment is stopped. And full suppression is not achieved in all cases. In some instances, the immune system is so damaged by long-term exposure to the disease and the toxicity of medications that a detectable viral load remains and the disease can still be passed on.
In recent years, ART has also become available to those who are sexually active and HIV-negative as Pre-Exposure Pro-phylaxis (PrEP). Available as a once-a-day dose of Truvada, it can, when used consistently, prevent infection in those exposed to the virus. Even though public-health officials are reluctant to abandon the recommendation to use condoms and reduce the number of sexual partners, condom use is falling away as a safer-sex practice by many gay men. PrEP adoption among affluent HIV-negative, urban gay men is on the rise (so much so that one friend referred to “the bareback revolution,” and another commented that “you can’t get laid in San Francisco if you’re not on PrEP”). For those with access to the drugs, the risk and impact of HIV & AIDS is effectively contained. Unfortunately, infection rates for other STIs is on the rise—largely as a result of the fall-off in condom use—and this is a cause for concern.
The impact of TasP and PrEP has been enormous, and not just in biomedical or epidemiological terms. One of the ways gay men have managed the risk of AIDS was through sero-selection—having sex only with people of the same HIV status. Many HIV-negative men protected themselves by explicitly seeking “neg only” partners, just as we who were HIV-positive limited ourselves to sex with “poz only” to avoid the complications of negotiating the potential emotional mine-field of disclosure, stigma and rejection. While I’m not suggesting that HIV stigma has vanished, it is clear that the difference in HIV status has become less visible and less important. We each take our pills to take care of ourselves. And by taking care of ourselves, we are taking care of others. There is even talk of “herd immunity”— the idea that, when large numbers of individuals are protected against the disease, the chain of infection is disrupted and the community as a whole reaps the benefits.
This upbeat tone is reflected in the San Francisco Department of Public Health’s (DPH ) stated goal of realizing UNAIDS’ vision of “Getting to Zero”: zero new HIV infections, zero HIV deaths and zero HIV stigma by 2020. Specifically, they are targeting a 90% reduction of both HIV infection (from 221) and HIV-related deaths (from 244) by 2020. That is also the year that San Francisco and Oakland will host the 23rd International AIDS Conference (AIDS 2020) and hope to showcase recent successes.
The city has adopted a three-pronged approach to fighting the disease: (1) preventing peri- and post-natal transmission through comprehensive, multidisciplinary, preconception, prenatal, gynecologic and general health care and case management services to women living with HIV; (2) preventing HIV acquisition among high-risk groups through active screening and rapid PrEP prescription (high-risk groups being mainly men who have sex with men and people who inject drugs); and (3) reducing mortality and transmission rates for HIV-positive people by providing ART treatment and care immediately, ideally within five days of diagnosis.
But HIV hasn’t gone away. No longer a crisis perhaps, we now must live with the epidemic as a chronic problem—one with a new face. A face that’s older, more open and less white.
Tez Anderson is resilient. HIV-positive since 1983, he has lived through having a T-cell count of thirteen. Tez not only survived— he flourished. He is skeptical of San Francisco DPH’s focus on getting to zero. He points out that, as of 2015, more than half of all people living with HIV in the United States were over 50. By 2020, it is estimated that the ratio will increase to 70 percent. As a long-term survivor, he lived for ten years with untreated HIV and it took a heavy toll. Tez coined the name “AIDS Survivor Syndrome” (ASS) for the constellation of symptoms that he and others still live with: neuropathy, enteropathy, lipodystrophy, cardiovascular problems, neurological dysfunction, anxiety, depression, isolation and suicidal ideation. The list goes on. “Those of us who survived a historically unique epidemic have a whole host of psycho-social issues. I named it because it nearly killed me; trauma, not AIDS.”
He heads an organization that he founded in 2013—playfully named Let’s Kick ASS—that focuses on raising awareness and promoting empowerment. Tez believes that younger people working in AIDS service organizations and shaping the debate in public-health policy have a different awareness of HIV. “They didn’t experience the profound sense of death,” he says. He thinks that they miss the fact that striving for an AIDS-free generation pulls focus from the ongoing issues faced by those living with HIV and its lingering impact on survivors. Critical of what he sees as too great a focus on containment, he believes AIDS research needs to focus on quality-of-life issues and not just infection rates. His response to the notion of getting to zero is: “when I’m dead.”
Compared with Tez, I was lucky. I started treatment within months of diagnosis when my T-cell count was still high. But it was still a terrifying experience. The feelings of dread were very real and, in the era before PrEP, I feared that I would be rejected and grow old alone. I believed that I would never find someone to love. I was wrong. I met and later married my husband, Bobby. He is HIV-negative and has a genetic immunity to the virus known as CCR5. Less than one percent of the population has this genetic mutation.
Tez likens AIDS Survivor Syndrome to complex PTSD, resulting from trauma suffered over a prolonged period of time. He explains that, in the years after ART drugs became available, his life fell apart. The news that he was going to live was hugely positive, but “on the other hand it was fraught with utter terror and fear about the idea of how am I going to live.” Having spent years preparing to die, “I didn’t have money saved for a 401k. Dead guys don’t need a 401k.” It was, he says, “like trying to catch a waterfall with his hands . . . I thought to myself, you might have trauma from all of the years of waiting to die, watching your friends die, sitting beside a lover’s bed when he died, talking him through his death.” Unlike PTSD, for Tez there is no post-ASS; the trauma continues as he and people like him live with damaged livers, impaired cognition, emotional isolation and a compounded social stigma.
While the new face of HIV & AIDS is definitely older, gay culture is notoriously youth-focused. Physical attractiveness, virility and sexiness have always been central to most gay men’s identity and sense of self-worth. Ageism, an ugly reality in Western culture generally, becomes magnified in the gay male community. Combine ageism with HIV stigma, and you quickly see why social isolation and loneliness is becoming a huge problem. As a fifty-four-year-old, I am becoming increasingly aware of how older gay men can become invisible as age encroaches. A 2017 study of people with HIV aged fifty or older conducted by Terrence Higgins Trust in the UK found that one-third reported being socially isolated, 82 percent experienced moderate to high levels of loneliness and 58 percent reported HIV self-stigma. Tez Anderson, resilient as ever, is optimistic. He believes in what he terms cross-generational dialogue, that the young have much to learn from us older ones, and we have a lot to learn from them. As he says, aging is a privilege that “too many of my generation didn’t have.”
HIV prevention in San Francisco also has a new face—Magnet—a sexual health center providing STI testing and treatment in the heart of the Castro district. Its clear glass front and bright, modern interior generates a wholesome, sex-positive vibe with comfortable lounge chairs and bubble gum machines dispensing free condoms while you wait. Anybody can drop in or schedule an appointment online and—regardless of ability to pay—get tested, become informed and access treatment. Pierre-Cedric Crouch, Director of Nursing at Magnet, believes this low-threshold-access model makes all the difference. He says, “Traditional healthcare systems are stuck in their antiquated ways, with administrative barriers that make it more difficult for those most in need to get care.” Eliminating judgement and reducing fear are at the heart of Magnet’s mission. To destigmatize HIV, we must destigmatize sex and sexuality generally. There’s no place for shame at Magnet.
The Magnet clinic is part of the San Francisco AIDS Foundation (SFAF)—the city’s largest AIDS service provider and advocacy organization. It avoids a lot of government-imposed bureaucracy by operating a pharmacy that benefits from federal legislation, known as 340B, that allows it to buy HIV meds at a discount but still bill insurers at 100%. The “profit” is then used to fund care for those not otherwise eligible, and nobody is turned away. Jesus Christ would be proud.
A strong PrEP advocate, Pierre-Cedric says getting someone on the medications early is one of the best things about his job. He sees a new generation growing up without fear. Watching them leave Magnet with prescription in hand he thinks, “You will never know what it’s like to worry about HIV if you stay on it. You’ll never have a single sexual encounter where you’re freaking out, waiting here saying, what will I do? That’s really powerful”. And the future looks to be even better. Research into an injectable version of PrEP, taken once every two months, looks promising. France and the UK are pioneering the use of PrEP on demand for anal sex. Sometimes referred to as 2-1-1, PrEP on-demand allows users to take a small number of pills immediately before and after a planned tryst. Unfortunately, it’s not nearly so effective for vaginal sex because of the longer time required for the drugs to get to vaginal tissue.
However, not everybody has fully embraced PrEP. It has its detractors— most notably Michael Weinstein’s AIDS Healthcare Foundation (AHF) —who claim that it promotes risky sex and spreads STIs. They believe condoms are the only fully effective way to control the spread of STIs, and have engaged in highly visible and very controversial advertising campaigns that have been criticized as fear-mongering. AHF has called PrEP “a public healthcare catastrophe” and even referred to it as a party drug. Pierre-Cedric, who points out that condom usage was dropping even before PrEP was introduced, thinks the AHF stance reinforces the stigma and judgement surrounding casual sex. The debate within our community has been and continues to be divisive.
Most of the gay men that I know consider sex an important part of their life. My husband and I both enjoy sexual encounters with others, and see it as one of the great pleasures we share. We are honest and open when others wish to join us, and we always try to be respectful of everyone’s feelings and needs. I understand that such an open approach to sex is not for everybody but, for us, it is a positive and bonding experience. PrEP has made a huge difference to our sex lives, eliminating feelings of shame and fears of rejection.
However, for many older gay men, the idea that unprotected sex is now safe is a hard message to accept. After decades of safer-sex messaging that centered on condom use and cautioning against unprotected sex, it’s been hard for them to let down their guard and learn to love bareback sex. Vigilance kept them alive, and they’re not going to lose this mindset that easily. But early resistance seems to be falling away. For most of us, the PrEP experience has been positive and the early fears have proven unfounded. Pierre-Cedric thinks we must trust the science and embrace PrEP as the best way of supporting individual choice and reducing HIV stigma. Yes, there is an upswing in other STIs but, as he says, he’d “rather treat your gonorrhea than treat your HIV.”
While Pierre-Cedric agrees that PrEP is a game-changer, there is one big caveat. The way he sees it, things are looking good, “depending on who you are.” Among gay, white men, PrEP usage has been a success. “We know how to detect, treat and prevent the disease and, as long as you stay in care and pop your pill, your life expectancy as an HIV-positive person is pretty much the same as if you were HIV-negative. And we also know that, once you’ve been undetectable for a few months, you’re not able to pass on HIV to other people, even if you tried.” For those without good information and easy access to the medications, the scenario is very different.
We are a diverse community and not every gay man fits the “Will and Grace” mold. Many men of color and working-class men do not feel comfortable within the cultural norms of the gay world. Not feeling part of the community, they are less likely to “get the message,” to access the information and avail themselves of relevant services and, tragically, are less likely to protect themselves and more at risk of infection.
HIV infection rates are falling across the board, but huge disparities exist. The most recent statistics for the United States show that 44 percent of newly infected people are African American, 25 percent are Latino and just 6 percent are White. This means that African Americans are eight times more likely to catch HIV than Whites. According to the Kaiser Family Foundation, although Black Americans represent only 12 percent of the US population, they account for almost 475,000 of the estimated 1.1 million people with HIV nationally. Among Black Americans, women have been hit especially hard. The rate of new diagnoses among African American women is 15 times the rate among white women and nearly five times the rate among Latinas.
The American South as a region accounted for 63 percent of African Americans newly diagnosed with HIV in 2016. I recently spoke to Kathie Hiers is the CEO of AIDS Alabama. She describes the situation there as “the perfect storm.” With the worst poverty in the nation, the absence of comprehensive sex education and a deeply conservative social environment that continually reinforces stigma, the South has a combination of structural factors almost guaranteed to perpetuate the spread of HIV.
She and her staff are one of the few blue lights of hope in a very red state. “It’s the best of times and the worst of times,” she says and, despite the recent medical advances, she believes things are likely to get worse. “I’ve seen certain trends recently that are really disheartening. We have a little drop-in center for young gay men of color in Birmingham and, oh my God, the young guys that are coming in have either just recently found out they are positive or we test them and they find out. It’s very hard for my staff. I’ve got a lot of people with big hearts.”
She tells the story of how, at their Christmas party, a young man showed up, “skinny as a rail, clearly sick.” The Director of Care blew off the party and rushed him to hospital. It turns out that he was seventeen years old and had known he was positive for a long time. He didn’t want to get into care because he didn’t want people to know that he was positive. They immediately started him on medication and found him housing, but sadly he died a week later. With approximately $20 billion of federal funding in place, people still tragically die of AIDS. And with threats to the Affordable Care Act mounting, Kathie believes the situation is likely to get worse.
AIDS Alabama focuses heavily on housing. Kathie explains that Birmingham has an excellent HIV medical center—the 1917 Clinic—that serves over 3,500 patients and provides world-class treatment and care. However, they found that they weren’t achieving viral load suppression rates similar to other comparable facilities. They researched the problem, and found that the primary reason was housing, or lack thereof. Stable housing significantly improves medical outcomes and also reduces the incidence of risky behaviors. As Kathie explains it, “people then don’t need to turn tricks to get a place to sleep or food in their mouths.” The HIV-positive population skews poorer, and the unavailability of affordable housing in Alabama, as elsewhere, adds to the problem.
The perfect storm extends to conservative legislators who support HIV criminalization laws. Alabama Code Section 16-40A-2 says, as Kathie understands it, “if you provide sexual health education, you must also teach that homosexuality is not accepted by society and is illegal, which it’s not. It requires you to teach a lie.” Her organization has been fighting for its removal, thus far unsuccessfully. But facts don’t seem to matter too much here. An attempt to introduce a syringe-replacement program was filibustered. One of the state legislators, Larry Stutts, a doctor from a county deemed high-risk by the CDC told her, “you can show me all the research you want. I don’t care. I don’t like it.” And it’s not just legislators. The deep conservativism and resistance to change runs deep. The city of Mobile has a population of approximately 350,000, but there is not a single doctor there willing to write a prescription for PrEP. Kathie and her team are forced to use telemedicine to get the medications into people’s hands.
After decades of advocacy and hundreds of millions spent in developing and refining medicines that have proven effective in treating and containing HIV, we are still faced with the reality that massive structural barriers, entrenched social attitudes and apparently insurmountable stigma are killing people. The burden of white privilege has rarely weighed so heavily. My experience with HIV is so very different from that of a poor black person living in the South. Any notion that the crisis is over needs to be checked against the hard reality of HIV-positive people fighting poverty and ignorance, not just in the South but throughout the United States.
I like to attend Mass at Most Holy Redeemer church in the Castro—and after these trips beyond “my bubble” I needed the reflection. It’s where most of the city’s gay Catholics go, and where Father Matt proudly declares that “God’s inclusive love is proclaimed here.” It’s one of the few churches where we can bring our “whole self” to Mass, where we can be fully who we. Most Holy Redeemer is embedded in the Castro community, and runs an AIDS support group providing volunteer help to individuals in need. In the broader archdiocese, gays—who, according to a recent Gallup poll, constitute 15.4 percent of the city’s population—are less-visible.
The city’s archbishop, Salvatore Cordileone, is most definitely a conservative. Appointed by Pope Benedict XVI in 2012, he is outspoken in his opposition to gay rights, same-sex marriage and gay adoption. Famously, in 2014, he spoke at the March for Marriage in Washington, DC, despite opposition by more than 80 local religious and civic leaders and a 30,000-signature petition asking him to disassociate himself from the anti-gay event. Searching the beautifully designed archdiocese website for “gay,” “homosexual,” “HIV” or “AIDS” yields no information, only laughable results. The archbishop and the Catholic hierarchy are woefully out-of-touch with the norms of inclusion and diversity on which San Francisco so prides itself.
People sometimes ask me why I am still a Catholic, and my answer is quite simple. It’s my religion. I love the Catholic church’s defense of the poor, its progressive stance on economic and foreign policy issues, its fight for social justice. I also feel that it’s my spiritual “home,” and that Catholic ritual and symbolism is the language of my soul. Just as I don’t stop being an American because I disagree with much of what the American government does in my name, I won’t stop being a Catholic because of the Catholic hierarchy’s many failings to shape a modern and relevant moral framework. I live with this knowledge, and try through my daily choices to heal the moral schizophrenia embedded in these identities. I resist.
The United States Conference of Catholic Bishops (USCCB) published their response to the AIDS crisis, Called to Compassion and Responsibility, in 1990. The hierarchy, disregarding the biomedical facts of HIV & AIDS, instead focused on—and continues to focus on—the epidemic as a behavioral problem, a disease of morality. They believe that the moral ideals of monogamy, chastity and abstinence are the only effective means to treat the underlying root cause of the disease—i.e., sin. By extension, any prevention strategy is basically providing license for immoral behavior and adding to the problem. The hierarchy’s opposition to condoms as a barrier to HIV transmission wasn’t motivated purely by a “pro-life” stance; after all, it was primarily affecting gay men and gay men don’t get pregnant. It was a problem with legitimizing gay sex. And, by the same logic, among straights, it allows people to get away with the sins of infidelity and casual sex.
Thankfully, most of us saw through the hierarchy’s tortured logic and need for moral consistency and ignored the prohibition on condom use. We simply didn’t agree with Joaquin Navarro-Valls, the Vatican spokesperson, when he said, “From the Church’s point of view, saving a life is not the foremost value on a moral issue.” And today we recognize the absence of the church in HIV prevention and outreach programs, and its muffled challenge to HIV stigma, as manifestations of the same dogmatic nonsense.
I also recently visited Freedom Park, a squatter camp outside Johannesburg, South Africa and home to 25,000 of the world’s most disadvantaged people. There I also saw a very different face of HIV & AIDS—one that completely exploded the sex-positive niceties of my privileged Western mindset. And which reinforced once again important challenges remain to making an AIDS-free world reality.
Pushed up against the perimeter of the Impala platinum mine, the camp lacks even the most basic infrastructure and exists in a legal limbo. The residents of Freedom Park—mostly undocumented migrants from other parts of Southern Africa—are attracted by the promise of trickle-down cash from the mine workers.
My guide, Jacky Diale, runs an Orphan and Vulnerable Children (OVC) program sponsored by local Catholic Bishop, Kevin Dowling. Jacky estimates the HIV infection rate among the people of Freedom Park to be over 50 percent and, like the rest of sub-Saharan Africa, it affects women and children the hardest.
The women of Freedom Park have no economic power, and rely on money received from men if they are to survive. This often means that they must provide sex in exchange for cash—and condoms are not an option. UNAIDS estimates that 75 percent of new infections in sub-Saharan Africa are among girls aged 15 to 19. South Africa alone has eight million people with HIV. The terrifying poverty in which these women live undermines the very notion of consent. They have little education, and are often prey to traditional healers who eschew modern medicine. In the extreme, there is a belief among some traditional healers that a man with HIV can be “cured” if he has sex with a virgin. Jacky pointed out a small prefab building—a place of safety—where her organization shelters girls whose guardian has died or is unable to care for them. The girls can stay here for up to three months while they seek protection. She speaks darkly of the “taverns” scattered throughout the park, where “bad things happen”—sex, drugs, violence, murder. Freedom Park has its own law: survival at any cost.
Hundreds of children are born HIV-positive in the camp, as in many other parts of the world. They live under a crushing stigma, far worse than anything we have experienced in the liberal, wealthy countries of the West. “HIV has a bad name, a bad history,” Jacky says. Those who are known to be positive are shunned. She tells the story of an eight-year-old boy who was cared for by his “granny”—an older woman who takes on the role of guardian. She gave him his medicine and kept his status secret, saying the pills were for TB. When she died, his aunts and uncles discovered the truth and mocked him. The boy left home in the middle of the night and hung himself from a nearby tree. Modern medicine couldn’t save him from the stigma of HIV.
Jacky’s OVC program offers an after-school service where local children can access supervision and support that is often missed by the guardian. It is open to all— documented and undocumented—and offers testing and treatment. The OVC operates in tandem with a health outreach program, in which a small group of health workers offer home visits to guardians providing information on nutrition, general health, hygiene and adherence monitoring. Without adequate food and hygiene, the medicines are ineffective. For Jacky and the Freedom Park health workers, the HIV crisis is far from over. They know that they will continue to see large numbers of HIV cases because of poverty, secrecy, shame and stigma. Medicine alone is not the solution here.
This visit challenged my assumptions about what we need to move the HIV & AIDS fight forward. Clearly, policies to address HIV & AIDS transmission in Freedom Park and similar communities across the Global South will need to not only expand access to prevention and treatment, but also combat pervasive disempowerment of marginalized communities and counter rampant misinformation and stigma.
It’s becoming increasingly clear that we have the medical technology available to significantly slow the spread of HIV. The drugs work. Research into a vaccine and ultimately a cure is moving forward, albeit more slowly than many of us wish for, but we can look forward to continued advances in the treatment of the disease. The crisis no longer biomedical—it is a crisis in social justice. Institutionalized racism, poverty, reactionary legislation and social stigma prohibit access to treatment and exacerbate the effects of the disease on those affected. It’s time for us, as Catholics, to direct the “Call for Compassion and Responsibility” back towards the Catholic hierarchy, insisting that it step away from its moral abstractions and re-engage in the public discussion of how we best address HIV & AIDS as it really affects the most marginalized in our society; that it moves past its medieval view of sex as sinful and embraces a morality fit for the modern world.