HIV Survivors and the ’16 Election

Brian Bromberger. The Gay & Lesbian Review Worldwide. Volume 23, Issue 5. September/October 2016.

“I’m the luckiest unlucky person in the world. No one wants to be the last man standing,” reflected Peter Greene, one of the eight long-term HIV survivors from the San Francisco Bay area, featured in the new documentary Last Men Standing. Greene personifies the ambiguous fate of many long-term HIV survivors. Having been voted Mr. Gay Colorado at age 22, Greene came to San Francisco in 1977 as part of the huge gay influx of that decade. He worked as a model, but in 1984 opened the Now Voyager travel agency in the Castro, catering to a mostly gay clientele. He tested positive for HIV in 1985. Determined to stay alive, he tried every possible drug and natural compound available, volunteering for many clinical trials. His fifteen-year romance with a married man would end with his partner’s AIDS-related death in 1994, the year he sold his interest in Now Voyager. He traveled and lived off the money he made, but having no income or savings left, eventually he could no longer afford to live in San Francisco. His friends helped him buy a mobile home in Palm Springs where he moved two years ago, though he never adjusted. He died there this past February of complications from hepatitis B, just as the documentary was being finished. Deserted and an outsider, he fulfilled his worst expectations of dying alone, far from the San Francisco home that he loved.

This year marks the 35th anniversary of the first official reporting of the AIDS epidemic. On June 5, 1981, the Centers for Disease Control (CDC) reported cases of the rare lung infection, pneumocystis pneumonia, in five young gay men in LA. But 2016 is also the 20th anniversary of the widespread distribution of the protease inhibitor drug cocktail (the anti-retroviral therapy HAART regimen), as well as the introduction of the viral load test so doctors could monitor the progression of HIV in the body. Both advances transformed AIDS from a nearly automatic death sentence to a chronic condition by reducing HIV to undetectable levels. For those who have struggled with HIV for many years, it’s an extraordinary accomplishment to be alive today. Some returned from the brink of death in the late ’90s in what came to be called the Lazarus Syndrome. Gazing through the lens at the experience of long-time survivors like Peter Greene provides a revealing glimpse-cultural, sociological, and political-into the state of HIV/AIDS more broadly at this time.

As Last Men Standing makes all too clear, being a survivor comes with financial, physical, and emotional wounds. The documentary reports that more than half of those living with HIV are now fifty or older, a figure that’s expected to rise to seventy percent by 2020. Prior to the HAART therapy, people with AIDS were convinced they would be dead within two years or less, with many ending their jobs or careers to go on disability, spending and depleting their savings before they died. Despite their new lease on life after 1996, many survivors either couldn’t return to work or experienced downward mobility when they found a new job. Having exhausted retirement funds and other assets, many were forced to subsist on Social Security alone. And living in expensive cities such as San Francisco, LA, or New York on reduced earnings made affordable housing and access to quality medical care crucial issues for them.

“I never thought I was going to live to be thirty,” comments Mike Shriver, who was recognized this year by the San Francisco LGBT Pride Celebration Committee with its Lifetime Achievement Award for his AIDS advocacy and activism, including being deputy director of federal HIV policy during the Clinton administration. Shriver found out he was HIV-positive in 1989, at age 26, and tested positive for hepatitis C in 1990. “I have been living with this virus for thirty years and I wake up every morning bearing the physical reality of having it,” which involves taking pills each day and coping with fatigue. Due to liver failure in 2000, he had to go on disability at age 37, then undergo painful and incapacitating interferon treatments for six years, which left him bedridden for long periods, ultimately saving his liver. Currently serving on the board of directors of the AIDS National Memorial Grove, Shriver can be said to be a thriving survivor.

Many survivors must contend with a number of chronic and sometimes debilitating conditions as a consequence of living with AIDS, or as a side effect of the drugs themselves (such as gastrointestinal issues and liver malfunction). Survivors may age faster after long-term use of anti-retrovirals, which can accelerate the onset of cancer, diabetes, and heart disease. Additional health risks can include neuropathy, viral hepatitis (as high as one-third of all survivors), kidney failure, bone degeneration, mobility problems, and cognitive impairment.

Psychologically, as revealed in the film, many survivors are probably suffering from some effects of post-traumatic stress disorder (PTSD), having lost lovers and friends to the disease over many years. Also, not to be forgotten, HIV can still be fatal, especially to those who can’t tolerate the drug therapies (the liver is especially vulnerable), with 6,955 people dying of HIV in 2013 (according to the CDC), albeit often disguised under more “socially acceptable” causes of death. Cleve Jones, founder of the Names Project AIDS Memorial Quilt, who tested positive in 1985, remembers the unremitting gloom of the pre-HAART era:

I think about the men who died every day. People who didn’t live through this epidemic cannot comprehend it. I lost almost everyone I knew. I made new friends and they died. I made more new friends and they died. Again and again. Ultimately we lost over 20,000 gay men in the ten-block radius of Castro Street. Most of my fellow activists didn’t make it. When I think if they had survived, how many of them would be serving in Congress, or taking home Emmys and Pulitzers … the loss is incalculable.

Various psychological problems are common among survivors, including depression, anxiety, nightmares, survivor guilt, social withdrawal, loneliness, emotional numbness, alcohol and drug addiction, sexual risk-taking, insomnia, low self-esteem, suicidal ideation, and so on. It has been estimated that as many as four percent of all HIV fatalities are suicides. In general, many survivors’ lives seem defined by a sense of absence, being forgotten, and repeated sorrows.

Perry N. Halkitis, an NYU professor of applied psychology and public health, interviewed fifteen gay men who contracted HIV before 1996 for his book The AIDS Generation: Stories of Survival and Resilience (2014). He begins by noting that all the gay men of his age (52), whether infected or not, are longterm survivors of the disease, which has now affected three generations of gay men. Halkitis summarizes the overall plight of AIDS survivors: “In truth, the gay men of my generation, the AIDS Generation-all of us, HIV-positive or negative, across every race, ethnicity, and culture, from every part of our country, from stockbroker to dancer to salesman-were robbed of a life filled with youthful frivolity, with endless optimism and hope. And as middle-aged men, we are as a group traumatized and fatigued from thirty years of war.” The White House updated the National HIV/AIDS Strategy in July 2015 with no mention of long-term survivors or their challenges. Is it any wonder that survivors feel relegated to the sidelines, left behind, even invisible? As Halkitis observes, despite advances today in treatment and prevention, “we are still reacting to AIDS emotionally as was done in the 1980s.”

Let’s Kick ASS-with ASS an acronym for AIDS Survivor Syndrome-is a national grassroots movement dedicated to empowering long-term survivors so they can live “long, healthy, dignified, engaged, meaningful and productive lives, free from stigma and discrimination.” Their recommendations for reducing stress and stigma include offering affordable, culturally-aware mental health resources, reforming Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI)-which force survivors to live at near poverty levels by limiting their ability to work and earn additional income-and providing affordable housing, especially for urban dwellers. Survivors need to be able to purchase longterm care insurance, which is prohibited even to working survivors, and they need more support for alcohol and drug rehabilitation programs. They also need better representation on boards of directors and in executive positions at AIDS institutions, not just figurehead or advisory board membership.

Even a progressive grassroots initiative like San Francisco’s Getting to Zero program, modeled after the UNAIDS goals- with the goal of zero HIV stigma, zero HIV transmissions, and zero HIV deaths by 2020-does little to address the needs of long-term survivors, though the focus on reducing stigma is laudable. According to this organization, some 94 percent of San Franciscans living with HIV are aware of their infection, 89 percent are linked to medical care within ninety days of their diagnosis, and 85 percent are receiving antiretroviral treatment. HIV stigma is also being reduced with new prevention options, such as Pre-Exposure Prophylaxis, or PrEP, which involves the drug Truvada, or Post-Exposure Prophylaxis (PEP) in emergency situations. Another approach is called Treatment as Prevention (TasP), mostly geared to younger gay men. While PrEP seems beneficial in the short-term, it is expensive and potentially toxic for some people, and the long-term health consequences are not known. There is also the potential of HIV drug resistance.

In any case, the recent appearance of PrEP has yet to make a dent in the otherwise sobering HIV statistics. In 2014, according to the CDC, 44,073 people were diagnosed with HIV (adding to the total population of 1.2 million in the U.S.), with the highest rate in the South. The rates of HIV infection for 2014 were disproportionately high for African-Americans, who accounted for 44 percent of new HIV cases even though they’re only twelve percent of the U.S. population (with Hispanics at 23 percent and whites at 23). Of immediate concern to readers of this magazine, “male-to-male sexual contact” was responsible for fully 67 percent of the total, though this group constitutes only two or three percent of the population (with heterosexual contact at 24 percent). Of those who contracted HIV from male-to-male sex, forty percent were African-Americans, 32 percent were white, and the balance were Hispanics, underscoring the extent to which the distribution is concentrated in a very small slice of the U.S. population.

While this essay focuses mostly on older long-term survivors, younger gay men who sero-converted after 1996 are not immune to the same multifaceted challenges that have already been described. Cleve Jones believes the stigma surrounding HIV still affects gay twenty- and thirty-somethings, having hosted neighborhood parties to talk with them. “I feel sad for young people because their experience of the pandemic is different from my generation. They don’t have the solidarity we had. Even if they get tested, they are reluctant to talk about their status with their friends or sexual partners. They feel isolated.” Younger survivors report being subjected to shaming on dating and hookup sites such as Grindr, where coded language such as “DDF” (“drug-/disease-free”) or “clean” are used as filters to screen out the HIV-positive, creating in effect a separate categoy of users who are to be avoided.

How will HIV issues play out in the November election? Hillary Clinton’s website has a whole page dedicated to how she would fight the disease, beginning with this statement: “An AIDS-free generation would be one of the greatest gifts the U.S. could give to our collective future.” Her principal recommendations include fully implementing the National HIV/AIDS Strategy (despite no mention of survivors), investing in research toward developing long-acting treatments and a cure for HIV (no mention of funding a vaccine), capping monthly out-of-pocket expenses for PWAs, especially for prescription drugs (at $250), empowering Medicare to negotiate lower drug prices, expanding the use of HIV prevention medications (e.g., PrEP), extending Medicaid coverage to provide life-saving healthcare to PWAs, and reforming outdated HIV laws that criminalize transmission. Still, with the exception of drugs, almost none of the Let’s Kick ASS objectives are mentioned, at least in her HIV platform. Life would probably improve for survivors under Clinton, but it doesn’t appear to be a high priority relative to other issues.

Nobody would be stunned to discover that Donald Trump has a less progressive platform on HIV. In fact, there is no mention of HIV issues on his website at all. Nor has he discussed these issues during any of his campaign appearances. So we can assume that he has no express policy on AIDS or HIV. Drew Gibson, in an article for TheBody.com, speculates what a Trump presidency might mean for people living with HIV. He notes that there has been some interest from the Trump campaign in meeting with HIV activists, as Clinton did, but nothing has taken place as of this writing. Trump wants to repeal the Affordable Care Act (ACA) but hasn’t said much about what might replace it (other than maintaining the ban on denying insurance to people with pre-existing conditions and allowing interstate health insurance competition and turning Medicaid into block grants to the states). Trump might consider privatizing the Department of Veteran Affairs (VA) healthcare system, turning it into a health insurance provider, rather than a network of hospitals, which would have drastic implications, as the VA is the largest single provider of medical care to PWAs. In fairness, Trump has been a big supporter of AIDS charities in the past. However, Gibson quotes Andrew Spieldenner, cosecretary of the U.S. People Living with HIV Caucus, as saying: “My gut tells me a Trump presidency would be bad for people living with HIV.”

It seems unlikely that HIV will be mentioned at all in the fall campaign, barring a major celebrity or politician coming out as HIV-positive, a sad emblem of the abandonment felt by many survivors. Progress at the federal level doesn’t look promising, but there may be more hope at the local level. Gabriel Quinto, a Filipino-American who was diagnosed in the mid-1980s, won a seat on the El Cerrito City Council in 2014 to become the first known HIV-positive person elected to public office in the San Francisco Bay Area. Writes Quinto:

I had a breakdown in late 2000, with a slow recovery, getting out from under a severe depression after years of anger, grief, and not feeling welcome in the Castro subculture. What got me out of my depression was the need to be engaged. I didn’t want to wait to die anymore but decided to make a difference. Being HIV-positive influenced my decision to run for city council. As an elected official, I serve on the disability caucus of the Democratic Party. I care very deeply about homelessness, mental illness, folks unable to afford their medications, and I am in a position to help them. People need to listen to our stories of survival. An HIV-positive young man hearing about me decided he wanted to be a candidate for the Democratic Central Committee in San Francisco. I’m excited about being a mentor to young LGBT people running for city councils in the East Bay.

The greatest source of optimism for people living with HIV may lie less in limited or unfulfilled political promises than in community empowerment, which builds strong connected networks providing information and support, such as the Love Heals Revival Dance for survivors that concludes Last Men Standing. These dances are a form of community affirmation, sometimes being the only place where these HIV-positive men feel their struggles are acknowledged, their stories shared, and where they are physically touched. Perhaps it’s a way for them to avoid the fate of Peter Greene. One of the survivors’ voiceovers encapsulates the hope that many long-term survivors would undoubtedly share: “We don’t have to suffer alone from the AIDS story but we can be released from that trauma and move on to living life, so while I don’t want that story to be forgotten, I don’t want it to be the story that runs our lives. The story of resilience, the joy, and happiness of surviving and thriving, of learning what is precious in life, that is what I want to live on.”

As we watch these men embracing each other on the dance floor, creating a legacy just by moving forward, fighting for their lives, coping with the unexpected, and managing some control with dignity and respect, they collectively shout out to indifferent politicians, to the LGBT community, and to society at large, the words of Stephen Sondheim from Follies: “I’m still here!”