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Viral Panic: Fear Has Been Useful in the Fight Against AIDS, Until It Wasn't 

Tuesday, Dec 16 2014
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Declan Cante and his boyfriend, Joshua Mootry, got their first glimpse of San Francisco at 3 a.m. on a rainy January morning this year as the Greyhound bus they'd ridden from New York puttered into the station at 200 Folsom St. They'd traveled a week through East Coast blizzards, along sodden Midwestern interstates, and down farm-checkered California highways, winding up in what they thought was a city of dreams.

"We were expecting to see parades and people everywhere," 21-year-old Cante says, explaining that he'd left New York to escape "a rut I was stuck in" — he'd bounced from a youth shelter to transitional housing, only to wind up in the shelter once more. But San Francisco, with its sterile downtown and bumper crop of high-priced condos, didn't quite meet their expectations. Cante and Mootry hadn't prepared themselves for the lack of affordable housing, and they'd only been vaguely aware of the tech boom. They hoped, at the very least, that San Francisco's reputation for tolerance would hold up.

Cante is lean and wiry, with a narrow face and a broad, thousand-watt grin. Because he is African-American and a self-described "pansexual," he says he's been miscast as the face of the AIDS epidemic: Residents at the shelter in New York assumed he was HIV-positive and receiving special treatment as a result. Cante does not have HIV, and because of new advances in drug technology, he hopes to stay that way. Nonetheless, he's haunted by the virus.

"I was initially really pissed," he says, recalling how the other homeless kids thought he'd been fast-tracked into housing in order to manage his "condition." But then he felt guilty, realizing that, like the other kids, he'd perceived having the virus as a character flaw. "I was very young when the epidemic was first on the rise, but looking back, it seemed there was [once] a lot more support for our brothers and sisters who were struggling with the disease."

It took a while for Cante to locate any kind of support network in San Francisco. He and Mootry spent their first three weeks living in Buena Vista Park, bracing against heavy rain, beat cops, and the Department of Public Works — Cante accuses city officials of confiscating the two suitcases they'd hidden in a bush. Eventually they hooked up with outreach workers at the Larkin Street Youth Services and the LGBT youth organization Lyric, who steered them into subsidized housing. It was only then that Cante launched his group, Negative Pozitivity, as a vehicle to meet people who either had AIDS or saw themselves as allies.

Members don't have to disclose their HIV status, he says, though part of the point is to remove the shame around the disease. To that end, Cante posts his HIV test results to the group's private website each month. He says five other members have followed suit.

"I gotta practice what I preach," he says. "I talk a lot of trash, so they hold me to it."

Cante's conflicting feelings about AIDS in some ways mirror American society's own. Initially, he saw it as a scourge. Then his anxieties gave way to compassion, which compelled him to reach out to others. Fear forced a sort of camaraderie and became a motivation to adopt healthier practices.

But fear doesn't work the way it used to.

This city may be the birthplace of the AIDS movement, and it may be at the forefront of AIDS prevention — in October, San Francisco supervisors earmarked $300,000 to educate the public on new medicines — but residents don't have a unified view of the disease. Attitudes vary from the Sunset to the Castro to the Bayview, HIV-positive activist Parker Trewin says. "San Francisco is only as liberal as the neighborhood you live in."

Perspectives on AIDS are indeed changing as the disease shifts from death sentence to treatable illness to preventable condition. New advances in antiretroviral medicine allow people with HIV to live normal lives and maintain undetectable levels of the virus in their cells. Many doctors say that now diabetes is more debilitating.

Yet, while Centers for Disease Control and Prevention data shows the epidemic abating overall, it also suggests that in some demographics — young gay and bisexual men and men of color in particular — infection rates are getting worse. That's a confounding paradox that's so far eluded experts. Some believe that we're victims of our own success, that because AIDS no longer engenders the fear of death, people are less inclined to get tested regularly or wear condoms. Still others believe that a constellation of factors, including lack of health care access, cultural hangups, denial, and, yes, fear, have made certain communities more vulnerable. Meanwhile, some doctors eschew new prevention drugs, thinking they'll cause people to be too cavalier; patients who buy into these moral arguments won't seek treatment on their own. Many don't even know what medical technologies are available.

AIDS panic once galvanized us, fueling walkathons and bikeathons, and inspiring high school administrators to place condom baskets in student bathrooms. Now this fear is working in a different way, and it's as unsettling as what came before.

In 1982, NBC News ran a science segment on a rare form of cancer, apparently triggered by the homosexual "lifestyle." "Researchers know of 413 people who have contracted the condition in the past year," NBC science correspondent Robert Bazell reported. "One third have died, and none have been cured."

"Investigators have examined the habits of homosexuals for clues," Bazell said, adding that American society might be witnessing a new, deadly, sexually transmitted disease.

Over the following months, news reports showed interviews with homosexuals who'd been forced from their jobs, San Francisco police who'd been issued masks "in case they had to resuscitate victims," a Wall Street banker and former drug addict who'd been quarantined from his family, and prison inmates in New York who'd all contracted the infection, now called Human Immunodeficiency Virus (HIV). Doctors at New York's Albert Einstein College of Medicine were having to disabuse their colleagues of rumors that HIV and its resultant disease, Acquired Immune Deficiency Syndrome (AIDS), could be contracted via skin-to-skin contact or contaminated air. Gay men who'd gotten the disease were asked, on prime-time news, whether or not they regretted being gay. AIDS victims were evicted by their landlords, shunned from their churches, and ostracized by their doctors. Children who caught the virus were kicked out of school. Ambulance drivers and hospital workers refused to take care of AIDS patients. Activists in the LGBT community accused the federal government of neglecting to fund AIDS research because it was considered a gay disease.

"It was horrifying," prominent San Francisco AIDS doctor and epidemiologist Robert Grant recalls, adding that when he began studying the disease as a UC Berkeley graduate student in 1984, health workers were floating a raft of conflicting theories about its provenance. "We had the sense that it was infectious," he says, "but there were also theories that it was due to anal sex, the use of poppers, or intestinal infections." Up until the 1990s, people still clung to the myth that AIDS was spread by mosquitoes in Africa. Grant had to fend off increasingly fantastical notions, even as he struggled to understand the virus from a scientific perspective.

"I think the human imagination fills in the gaps whenever you don't know something," he says. "It's as if humanity needs a disease to pin all its fears on."

Disease panic has been one of society's most persistent tropes: Illness phobia begets xenophobia; an unexplained disease creates an Other.

Throughout the early 20th century, Americans pinned many of their anxieties on cancer, Grant says, citing a theory promulgated by Susan Sontag in her 1978 book Illness as Metaphor. Cancer then was considered a reflection of the patient's moral failing, rather than a biological process. That stigma slowly disappeared after the 1960s and 1970s, when medical advancements showed that cancer could be diagnosed and treated. A couple of decades later, Grant says, AIDS became the new plague.

As AIDS became more comprehensible and manageable, though, the scare rhetoric shifted to subsequent pandemics: SARS in 2003, avian flu in 2006, and Ebola in 2014. Each came with a similar narrative: A strange foreign agent corrupts the body before modern medicine can step in. Outbreaks are, in Grant's words, a "fine foil" for our fear of the unknown.

But panic has an upside.

Grant offers an analogy from the animal kingdom: Imagine a herd of wildebeests migrating through the Serengeti, and one of them spots a lion skulking in the brush. He sounds the alarm, and there's a stampede. The lion gives chase and kills a straggler, which incites the others to run faster.

"What's amazing is that group panic is helpful," Grant says. "The vast majority of wildebeests survive."

So too with the hysteria around HIV in the 1980s and '90s, when the virus was still a death sentence. In many ways it was productive, Grant says. It instilled the kind of anxiety that previous generations had about unwanted pregnancy, allowing high school sex ed teachers to promote condoms. It turned AIDS into a political cause, inspiring groups like the AIDS Coalition to Unleash Power (ACT UP), whose members chained themselves to a banister in the New York Stock Exchange in 1989 to protest the high price of AZT — at that time the only antiretroviral drug available for AIDS patients. It launched a safe-sex movement that stemmed the tide of new infections, and it encouraged solidarity within the gay community. The period of abject fear led to a period of compassion for AIDS victims; the virus became a cause celebre.

"Let's not forget that in the '80s we had a president who wouldn't even mention HIV in the news, because he thought it was attacking some other group [gays and intravaneous drug users] that he didn't need to care about," Grant says. Not for nothing did ACT UP adopt a pink triangle logo (modeled after the inverted triangle badge the Nazis forced gay men to wear during the 1930s) with the slogan "Silence = Death."

Fast-forward 30 years, Grant continues, and we're no longer doing emergency triage: HIV isn't curable, but it's treatable.

Parker Trewin — whose most searing memory of the AIDS epidemic was seeing a boyfriend's roommate tethered to an IV drip, with two months to live — says the stakes are wildly different now. Now 54, Trewin tested positive in 2003, but the virus is now undetectable in his blood; he only has to take two antiretroviral drugs per day to control it. Not to mention that many people who might have been at risk in the past can now stave off the virus entirely with Pre-Exposure Prophylaxis (PrEP) drugs, the AIDS equivalent of a birth control bill.

Supervisor David Campos stood on the steps of City Hall on a foggy morning in September, flanked by a motley retinue. Fellow Supervisor Scott Wiener towered over him at the dais, while a small army of activists dangled pink signs with slogans like "Access = Health," and "Where my PrEPsters at?" Among them was Eric Leue, the reigning Mr. Leather of Los Angeles, his burly frame swaddled by an electric blue shirt and "Mr. Leather" sash. Opposite Leue stood Adam Zeboski, the AIDS Foundation test counselor who recently gained social media fame as a self-proclaimed "Truvada Whore" of San Francisco — "Truvada" being Gilead Science, Inc.'s brand name for the AIDS prevention drug PrEP, "whore" being a swipe at the drug's detractors.

To Campos, PrEP could be the miracle drug that quashes HIV for good, in a city that has long been a symbol of the epidemic. He'd called this rally to drum up support for legislation that would allocate $800,000 to a city co-pay program for residents who can't afford the drug, and to hire "health navigators" who could help people get approval from their insurance carriers. The bill passed in October, although supervisors voted to eliminate the co-pay program and allocate only $301,600 for the navigators.

Still, Campos and Wiener see it as a step in the right direction. By all appearances, the epidemic should end here. Yet it doesn't.

"The view in the mainstream is that somehow the HIV epidemic is over," Wiener told the crowd at City Hall. "I'm sick of meeting people who are 18, 19, 21 years old who are positive." The day before the rally, Wiener came clean about his own Truvada regimen in a blog published on Huffington Post, called "Coming Out of the PrEP Closet." We have a powerful tool in our hands, Wiener writes, arguing that PrEP could end the spread of HIV if it had enough political will behind it. Right now, the drug's cost, combined with the misconception that it will promote reckless behavior, has prevented it from being widely available. It's one of many services that aren't reaching the people who need them most, Wiener says.

Between 2008 and 2010, CDC researchers saw a 15 percent decrease nationally in new HIV infections among heterosexuals, and a 22 percent decrease among injection drug users.

At the same time, though, infection rates for gay and bisexual men rose by 12 percent. According to CDC senior adviser Richard Wolitski, that increase was driven primarily by younger populations: LGBT men between the ages of 13 and 24 saw a 22 percent spike in infections. HIV also appears to be rising in communities of black gay and bisexual men who, per CDC surveys, are especially unlikely to know their HIV status. "So not only will they not get access to medical care," Wolitski says, "they'll unknowingly transmit the disease to others."

More troubling, yet, is data indicating that HIV treatment is reaching only a fraction of the people who need it. In 2010, fewer than half of gay and bisexual men diagnosed with HIV nationally were receiving antiretroviral therapy, which would lower their chances of spreading the virus. That could be a matter of health care costs, or inadequate services, Wolitski says, though he also doesn't discount psychological hangups. Surveys that the CDC conducted in 20 U.S. cities between 2005 and 2011 show that many gay and bisexual men aren't following the Centers' recommendation to get tested at least once a year. Some people might feel healthy and mistakenly believe they don't need medical care, Wolitski says. Many simply don't want their lives being defined by a single laboratory test.

And younger men aren't routinely using condoms, either. Rates of rectal gonorrhea and syphilis have also risen in recent years and, according to Grant, only one-sixth of gay and bisexual men report using condoms on a regular basis. He suspects the ratio is even lower for heterosexuals.

That's led analysts to develop two competing theories. One is that Americans have been so paralyzed by the AIDS terror of the last three decades that it's kept them from acting rationally — Grant and others call this "AIDS survivor syndrome." The other is that they're simply not terrified enough.

Zach Murray might count himself among the survivor syndrome victims. The 25-year-old Baltimore native says he was "outed" as a bisexual while studying at Cornell University. That revelation spurred a rumor that Murray was HIV-positive. With no corroborating evidence, he just assumed it was true.

"I literally sat there for five years waiting for an emergency," he says, "for the thing that would force me to find out."

Murray, who is African-American, says he didn't have a ton of black gay or bisexual role models to look to, growing up in Baltimore. There wasn't a Scott Wiener or Bevan Dufty analogue to represent the city's African-American community, he says, and there wasn't the same ferment of AIDS activism that exists in San Francisco. Coming out — or testing positive — meant risking alienation, he explains: "In some communities, [it's] a different experience. Sometimes there's a social death that comes before the diagnosis."

Murray began coming to terms with his sexuality around the time he moved to San Francisco in 2013. He found a black doctor who specializes in HIV, and who he hoped would empathize with a young, closeted man of color. Murray finally got tested this year, and found out he was negative.

"I was just stunned," he says. "I thought I was living with HIV, and it turned out the battle was completely inside my head."

Still, the fear that incapacitated him for so long could also have killed him.

Researchers at the Centers for Disease Control and Prevention believe that fear may in fact be to blame for a recent surge in infections, particularly among Murray's peers.

"More than anything, people are afraid of being socially isolated," Grant says. "Imagine if you have a group of friends who aren't infected with HIV, and you become infected. ... That may mean losing your friends. Or it may mean they become the 'I-hope-everything's-going-well-and-I-feel-so-bad-for-you' kind of friends, which is horrifying."

It may also mean only dating other HIV-infected people — a phenomenon that the late AIDS researcher Jeff McConnell called "viral apartheid." To avoid being shunted into an HIV ghetto, a lot of people won't reveal their status, or be vague about when they had their last test, Grant says. And that's dicey.

The thing about the wildebeests, he adds, is that they go back to their old life as soon as the chase is over — they're not haunted by the specter of another lion coming around. Humans, in contrast, have long memories, unable to forget the trauma of being chased by the AIDS virus. Long-term fear calcified as PTSD — the "survivor syndrome" that Grant describes. It prevents people from getting tested for fear that they'll be ostracized if the results come back positive. Fear becomes its own strange epidemic.

Yet it's perhaps also dangerous to have no direct relationship to that fear.

Adam Zeboski, a 26-year-old test counselor at the San Francisco AIDS Foundation, blames surging infections on a generational rift. "Younger folks never experienced the trauma of losing huge numbers of friends and loved ones during the '80s and '90s," he writes in an email. "For the younger generation, HIV prevention may sit on the back-burner, as they deal with more pressing issues as finding a job, housing, and simply trying to get by."

But Grant also blames the George W. Bush administration for de-emphasizing condoms on a national level and claiming that abstinence and monogamy were better choices. Condoms are still touted in high school sex education programs, but not with the same fervor of the early '90s. "[They] went from being a mainstay of prevention to being a backup of a backup plan," Grant notes.

Because AIDS is a sexually transmitted disease specifically associated with gay men, it's always had a moral aspect. Advances in medical technology haven't destroyed notions that the virus is some kind of punishment; meanwhile, abstinence movements have turned back the clock on years of safe-sex messaging.

That could also be what's raising infection rates, Grant says. Denying the existence of the lion doesn't keep it at bay.

Had PrEP emerged in the 1980s or '90s, it would have gotten a different reception, says Neil Giuliano, CEO of the San Francisco AIDS Foundation. "If someone would have told us 25 or 50 years ago that you could take one pill a day, and it would protect you from HIV, there would have been lines around the block," he adds.

Yet now that the pill exists, it's not getting the notice it perhaps deserves. People have to be reminded that AIDS is a disease they don't want to get, Giuliano says. Some have even expressed reservations about the drug, or condemned it with moral platitudes. Doctors who might have once thought of PrEP as a necessary tool now view it as a luxury item — or worse, a means for permitting wayward lifestyles.

But Americans have a long history of conflating prevention with promiscuity. When birth control pills were first approved for in 1960, they were only prescribed to married women, on the assumption that their unmarried counterparts might seize the opportunity to have sex out of wedlock. Similar notions have stymied the vaccine for human papillomavirus (HPV), which is failing to reach its intended demographic. Recent national CDC data shows that only 37.6 percent of girls ages 13-17 received the recommended three doses of the HPV vaccine, despite legislative efforts to endorse it.

Detractors of PrEP are trotting out the same arguments, contending that people will have more sex, and use fewer condoms, if they're given a pill that inoculates them from the HIV virus. AIDS Healthcare Foundation leader Michael Weinstein said as much in an April interview with the Associated Press, in which he dubbed PrEP a "party drug."

Many health care providers harbor those stereotypes too, Grant says. He remembers one patient complaining about a doctor who wouldn't prescribe PrEP because it was too expensive; other doctors simply insist that condoms are better. In another case, a patient who asked for PrEP was advised to lose weight instead, so that he could wind up "in a loving relationship." Grant's colleague, Bay Area Perinatal AIDS Center director Shannon Weber, knew a woman who requested PrEP in order to have a baby with her HIV-positive partner and was offered Xanax instead — because having an HIV-positive partner must be "soooo stressful."

Grant is the protocol chair for the Pre-Exposure Prophylaxis Initiative (iPrEx) clinical trial, a study to prove the efficacy of PrEP, in 11 countries. He's also working to develop a form of PrEP that can be taken every three months, instead of every day. He's bullish about making the drug available to everyone, and adamant that it won't cause users to become more cavalier about their sex lives.

"People want to think of human behavior as being very rational," Grant says. "But economic behavior is irrational, so why are we assuming that sexual behavior is going to be rational?"

He believes a drug that emphasizes planning, and forces people to consider their future behavior, will in fact promote safe sex rather than discourage it.

But Grant and other PrEP advocates have trouble conveying that message, even to the people who need it most. Zeboski, who is outspoken about using the drug himself (he's taken it for two years) says that many LGBT people believe it's a product for "older, privileged, white gay men." Zeboski has made a valiant effort to fight this misconception, but he can already see its effects: The privileged-white-man stereotype, coupled with the high cost of PrEP, might be what's concentrating new HIV infections among lower-income black and Latino men in San Francisco, he surmises.

San Francisco defies national trends in that infection rates here are decreasing overall, including in populations of men who have sex with men. Testing and treatment rates are increasing, as is the distribution of antiretroviral drugs, says Susan Buchbinder, director of the Bridge HIV program at San Francisco Department of Public Health.

Yet, even in a city with a much sunnier outlook, HIV rates still manifest unevenly.

Of the 359 new HIV diagnoses reported in San Francisco in 2013, 44 (12 percent) came from African-American patients and 88 (24 percent) came from Latinos. That means both groups comprise a much larger portion of the infected population than of the city's general population; according to census data, the city is 6 percent African-American and 15.3 percent Latino.

That pattern preoccupies health workers like Eva Kersey, the assistant manager of HIV testing services at Larkin Street Youth Services. "There's a lot of talk about this increase [in infections] being mostly in communities of color," she says, attributing the disparity to lack of health care access and educational resources, but also to cultural perceptions. Many men who sleep with other men don't identify themselves as gay or bisexual, and don't want to be associated with the AIDS virus; to Murray, that's particularly true in black and Latino communities, where the stakes of coming out are much higher. (Health-care providers have tried to help with nomenclature, lumping all "men who have sex with men" into an all-encompassing "MSM" category.)

Forty-five-year-old San Francisco resident Gabriel Rocha-Zendejas concurs, saying that when he contracted AIDS as a teenager in Mexico City, he assumed it was punishment for being gay. "I remember being 16 and aware I was HIV-positive, and keeping it from my family for many years," Rocha says. "The last thing you want is to be rejected." Rocha-Zendejas was eventually granted asylum in the U.S., after being kidnapped and raped in what he thought was a reprisal orchestrated by a family member.

Murray says, similarly, that his own coming out was a long and drawn-out process — no big Facebook status update, no dramatic announcement at a family gathering. He believes it's common for African-American men to preserve social ties by staying in the closet, but that a medical worker from a different social background might find it befuddling. "One of our blind spots is understanding the cultural context of sexuality," he explains.

In the early 1980s, it was seen as punishment for homosexuality or drug use; even this summer, Parker Trewin says he encountered angry protesters at a Pride Parade in L.A. shouting "God Hates Fags" into their megaphones. San Francisco, for all its progressive street cred, is still a "complex patchwork of tolerances," Trewin adds. It'll take more than a great leap in medical technology to reach all of them.

Months before moving to San Francisco, when he was still lurching from one tenuous housing situation to another, Declan Cante returned to his youth shelter in New York and slammed his negative HIV test results down on a table. He says his former roommates were dumbfounded.

"Isn't it horrible?" he asks, remembering his embarrassment and urgency to set the record straight. "That's how much I cared."

Today Cante lives in a single-room apartment on Fifth and Folsom streets, in a large stucco building run by San Francisco's Community Housing Partnership. He shares the room with a large brown dog; his boyfriend, Mootry, lives down the hall. Cante works the graveyard shift at CHP's Tenderloin office, but says he'd eventually like to run his own nonprofit. He started taking PrEP a year and a half ago as part of a clinical study in New York, and has kept up the pill-a-day regimen every since.

Cante finds the drug enabling, but he can see why many of his peers are wary. "If you take it, you might be perceived as overly sexually active. Or gay or bisexual. Or HIV-positive," he says, explaining that some people still misconstrue "HIV prevention" for "AIDS treatment."

He's unfamiliar with the misconception of PrEP being a gay white men's luxury item, but says he can see where it came from. The drug still suffers from a dearth of promotion to African-Americans and Latinos, he says, and it's still fraught with cultural baggage. Some of Cante's friends take it in secret. "That stigma just sticks around," he says.

Yet the problem isn't just secrecy around a pill regimen; it's that all these strain strains of fear, complacency, and lack of access have compounded to keep people away from treatment, producing a surge of infections at a time when AIDS should be going away.

Perhaps Campos' new platoon of health navigators will help. Or maybe Grant and his colleagues can counter the stigma with a compelling sales pitch: A representative from the toy manufacturer Mattel appeared at a recent PrEP symposium in Santa Monica to coach doctors on positive messaging, the idea being that PrEP could borrow its marketing strategy from Barbie.

In the meantime, the AIDS Healthcare Foundation — whose founder dismissed preventative AIDS medicine as a party drug — has launched its own campaign to combat rising rates of syphilis, owing, presumably, to lax condom use. To promote the effort, AHF has plastered BART trains with ads featuring a "Syphilis Explosion" headline over a picture of an erupting volcano.

Evidently panic is upon us, again.


About The Author

Rachel Swan

Rachel Swan

Rachel Swan was a staff writer at SF Weekly from 2013 to 2015. In previous lives she was a music editor, IP hack, and tutor of Cal athletes.

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