Recycling a tragedy

CAUTION: This article contains graphic material.

FRESNO, Calif.—In her seven years working as an infectious disease specialist at a community clinic, Priscilla (WORLD agreed not to use her real name to protect her job) has had to inform countless patients that they have HIV or AIDS.

Some cry when they hear the diagnosis; some rage at whoever infected them. Some fret over how to tell their family. Many worry that they can never have sex again. Others accept the outcome with a detached shrug: “OK, whatever, I played with fire and got burned. Just give me the meds.”

Most patients saw it coming, even as they lived in willful, blissful ignorance. The majority of Priscilla’s patients are gay or bisexual men who were sexually promiscuous and attended drug-addled parties. When Priscilla asks for specifics—“Do you have anal sex? Are you on top or bottom? Do you put things up your rectum? Do you put meth up there?”—most patients squirm and deny passionately until Priscilla shows them their lab results: The blood tests don’t lie. Then she kneels beside them: “Look, I am not here to judge you. I’m here to help you.”

She then asks how many sexual partners they’ve had. They usually respond, “I haven’t a clue.” She persists: “Just give me a ballpark: Five? Ten? Twenty?” They stay quiet, so she continues: “A hundred?” Then they quietly answer, “Probably more than that.”

Priscilla’s patients reflect the fact that HIV/AIDS remains a serious problem. According to latest estimates from the Centers for Disease Control and Prevention (CDC), about 50,000 people become infected with the virus each year in the United States. Youth between ages 13 to 24 account for 26 percent of these incidences—of which 72 percent are gay or bisexual. Overall, men who have sex with men account for about 78 percent of new HIV infections among men in 2010, despite representing just 4 percent of the U.S. male population; by race, African-Americans bear 44 percent of all new infections, despite representing 12 percent of the U.S. population.

Jena Adams, a communicable disease specialist at the Fresno County Department of Public Health, voiced questions many health officials are wondering: “Why are we seeing so many cases? How can they be testing positive when there’s so much information out there?”

The crisis isn’t just hitting large metropolitan cities like San Francisco. Conservative Fresno is also watching alarming statistics unfold: New cases of HIV infections have been increasing since 2009; in 2014, it rose 6 percent. About 20 percent of all HIV cases in Fresno are between the ages of 15 and 24—the majority of them gay or bisexual males, and disproportionately black and Latino.

For all the good medical progress has done for HIV/AIDS treatment, it has also inflated an artificial bubble of security around the nation. No longer is AIDS a death sentence, but a chronic disease like diabetes. Today, medications ensure a long and relatively healthy life for those with HIV, and there are even pre-exposure (PrEP) and post-exposure (PEP) pills to reduce dramatically the chances of HIV infection.

But that’s what young people are hearing—all the positive changes—while forgetting the dark ages of AIDS, said Adams: “They’re thinking, if I test positive, I can just take a pill. Young people don’t think people are dying from this disease anymore.” She sighed and hugged her elbows. “It’s really unfortunate. You don’t hear a lot in the media about HIV today. Instead, there’s a lack of awareness, a lack of urgency that we’re facing a crisis.”

Yet in 2012, more than 13,000 people diagnosed with AIDS died in the United States. The media have mostly stayed silent about it, even as they routinely feature stories on same-sex marriage—a long-time focus by the LGBT community, which some activists say has shifted national attention away from its more vulnerable subgroups.

“IF WE’RE NOT CAREFUL, WE'LL FIND ourselves in a situation similar to where we were 30 years ago,” declared Toni Harrison.

As director of The Living Room (TLR), Fresno’s longest-standing HIV/AIDS social support center, Harrison has watched the re-escalating HIV and AIDS infections with urgency and frustration. She blames the lack of media attention and budget cuts in HIV/AIDS prevention and education. Back in the early 2000s, Fresno had about 10 HIV educators in the county. Today, it has zero.

Each day, about 100 people walk into TLR. Some simply stick their hand into a fishbowl packed with neon condoms, grab a handful, and walk out. Others come for the support groups, hot lunches, and social services. For many, TLR is the only place of safety and companionship they know.

One middle-aged client with a handsome Spanish conquistador mustache told me he’s never belonged anywhere. Even when he was a young boy, his peers bullied him for being gay. “I got to the point where I stood for nothing so I fell for everything,” he said, quoting a Katy Perry song.

Later Brian, who asked only to be identified by his first name to protect his current job, explained, “There is a hole in our life, so we fill it with sex, and we fill it with love—or we think it’s love, but we know it’s really lust—and drugs and alcohol. Still we feel empty because there’s no constant.”

When Brian first tested HIV-positive in 2012, he lived in denial. He was jobless, basically unemployable. He lost his house, though now he says he really “gave it away” because of his own bad choices. It took more than seven months after the diagnosis for Brian to admit he needed help. But he says he became tired of reminding people he’s worth something.

“Nurses and doctors put me in a box, or they dismiss me, or treat me like a number,” he said. Brian, who identifies as a Messianic Jew, also didn’t like it when Christians pointed out that unrepentant sin—including homosexuality—leads to hell. Even the gay community shuns him when he mentions HIV or AIDS: “They don’t want to think about it, they don’t want anything to do with you. When that happens, I just want to shake them and say, ‘Look at me! I am a human being who deserves respect too.’”

TLR founder Jules Mastro also remembers having to fight for dignity and respect. He’s been HIV-positive since 1981, when he discovered a swollen lymph node on his neck. After his brother died of AIDS, Mastro dived into nonprofit advocacy work for persons with HIV/AIDS.

In 1989, a day before his 39th birthday, Mastro was formally diagnosed with HIV and anal-rectal cancer. By 1995, he had lost 60 pounds in five weeks and was hobbling on a cane. Mastro decided to live his final days with flair. He accepted every credit card offer and maxed out on all of them to remodel his house, upgrade his stereo equipment, ride helicopters in Hawaii, and cruise in limousines. But then the “cocktail”—the first effective HIV treatment—became available, “and then … I lived!” Mastro said, mock-indignantly. Eventually he had to declare bankruptcy, but he gained at least 20 more miracle years that many of his gay friends didn’t.

Mastro has witnessed and celebrated the diminishing stigma against AIDS over the years, but now he worries about public indifference: “The thinking is: It’s an old people’s disease—there’s treatment!”

‘The thinking is: It’s an old people’s disease—there’s treatment!’ —Jules Mastro, founder of The Living Room

True, medication suppresses the virus. But there is no cure, so patients must swallow pills for the rest of their lives. Antiviral medications are also expensive—Mastro’s cost $60,000 a year—and come with unpleasant side effects. While most people qualify for public assistance programs to pay for their regimens, they constantly struggle to meet eligibility. And then there are 12.8 percent of those living with HIV who don’t even know they’ve contracted the virus.

A while ago, a 17-year-old boy visited TLR with his parents, who asked if it’s okay to share dishes. He had been diagnosed HIV-positive just one week before his high-school graduation. Another local 16-year-old boy was carried to the hospital with befuddling symptoms. After a series of tests, somebody finally tested him for HIV—he’d already progressed to AIDS. The boy later revealed that he’d been sexually active since he was 12 through gay dating apps in which users meet and “hook up.”

“Kids today have no fear of AIDS or HIV because there is no education anymore, and AIDS has been around before they were born.” Harrison said. “Because they’re young and gay, their attitude is: ‘I’m going to get it anyway, so why not do it now?’”

Combine that kind of youthful irresponsibility with technological ease to satisfy lust, and add an LGBT community that has moved on to other issues, and HIV is becoming another microbiological volcano waiting to erupt.

THE SEXUAL REVOLUTION PROMISED many things, namely freedom, equality, and pleasure. Sexually transmitted diseases such as herpes, chlamydia, gonorrhea, and syphilis spread freely among both sexes and all races—and it wasn’t long before an unfamiliar virus first struck isolated groups of otherwise-healthy gay men in the 1980s.

The atmosphere during the early 1980s was one of euphoria for the urban gay community. After years of condemnation and repression, they were finally free to do whatever they wanted, with whomever they wanted, without being judged. Sex was idolized, politicized, and commercialized. Businessmen raked in profits through gay bathhouses, discos, and sex clubs advertising “your fantasy, your pleasure,” where patrons played all night with multiple strangers, then returned the next night with kinkier tastes. And why not? Gay sex shakes off all the pesky entanglements of heterosexual sex: Nobody ever gets pregnant, and gay men don’t have to deal with the inhibitions of the female sex.

But these sexual Disneylands were ghastly breeding grounds for infections. When some doctors and leaders advocated bathhouse closures, gay men and magazines accused these “monogamists” and “Sex Nazis” of “stirring panic.” They demanded hard evidence that AIDS was spread through sex.

Meanwhile, the death toll soared. Hospitals were bloated with patients suffering from exotic ailments, and terrified staffers either waddled in wearing space suits or flat-out refused to touch the patients. All the while, the National Institutes of Health hummed and hawed while sitting on grant funding for AIDS research. Some considered AIDS God’s judgment against homosexual perversity, even complaining about tax dollars spent on research for “diseased homosexuals.”

Gay community activists felt they’d waited long enough. In March 1983, controversial gay activist and playwright Larry Kramer pounded out a scathing essay titled “1,112 and Counting” that made the cover of New York Native, Manhattan’s leading gay publication. “In all the history of homosexuality we have never before been so close to death and extinction,” he thundered, listing by name all the individuals he said were abetting the pandemic—a very long list that included the mayor, public health officials, the White House, and the media. He then turned his rage on his gay counterparts: “I am sick of everyone in this community who tells me to stop creating a panic. … I am sick of guys who moan that giving up careless sex until this blows over is worse than death.”

The piece, named after the body count at the time, galvanized a new gay political movement, with AIDS providing the gay community a sympathetic public platform it had never had before. The grisly, heart-wrenching visuals of HIV sufferers transformed the way the nation saw them, and the way they saw themselves. And once they captured the public’s heart, they took control of the narrative: Their fight was no longer just about rebellion but also normalization.

Gay activists, in an effort to halt the epidemic without giving up their sexual practices, invented “safer sex.” Public health educators now promote “safe sex” with condoms to decrease STDs and HIV infections, and also criticize homophobia as a barrier to gay health.

I asked several interviewees if we could ever help people reject premarital sex and commit to a monogamous relationship. Unsurprisingly, they burst out laughing. “No, no, no,” they told me. “That’s unrealistic.”

AS A DOCTOR, PRISCILLA LEARNED THAT, sometimes, the best way she can treat her patients is to listen to them. “Time after time, you find out that they’re so hungry for love, but there’s no human love that can satisfy their needs—any of our needs—except Jesus,” Priscilla said. “But you first have to listen before you can preach. You need to show them that you care, that they have worth, you know?”

One patient in particular walked in accusing Priscilla of medical negligence. He had tested HIV-positive in 2013, but had then disappeared until he returned two years later with AIDS. He was angry and terrified, desperately lashing out at anyone.

He softened as he told Priscilla about his son’s death and his relapse into methamphetamine use and homelessness.

Priscilla then asked, “Can I pray for you?” He began to cry as Priscilla prayed out loud for him to know the love of Christ and to recognize how valuable he is to Christ. Soon after, this patient came back bursting to share good news: He’s found a church community to pray for him.

Such stories are not rare for Priscilla. Every patient except one has welcomed her prayers, and most have wept. The next checkup, many grab her hand first: “Doc, let’s pray.” They tell her, “Doc, that’s better than any HIV medication that I could ever take.”

Sometimes, Priscilla treats patients who are inmates with HIV and AIDS. One female inmate barely weighed 80 pounds and still had her wrists handcuffed to the bed. Priscilla begged to release the patient from the handcuffs, but the law was the law, and it was followed. The woman died still chained to the bed.

Priscilla sees herself in her: “I’m reminded that this is how we all are in God’s eyes: All have fallen short in the glory of God. We’re all imprisoned in our sin, and it’s only the gospel that sets us free.”

Graphics: Rachel Beatty

Listen to Sophia Lee discuss “Recycling a tragedy” on The World and Everything in It.