H.I.V.’s Grip on the American South

One night after midnight in 2012, Deon Haywood was sitting at home, in New Orleans, watching TV and having a drink, when she got a phone call. The owner of her office building was on the line.

“There’s been a fire,” he said.

Haywood ran out to her car and drove to North Jefferson Davis Parkway, to the stout gray building that housed Women with a Vision, a community nonprofit she runs, which does H.I.V.-prevention work and other forms of advocacy geared toward women of color. In Louisiana, the death rate from AIDS is nearly twice the national average. Women with a Vision, founded in 1991, survived Hurricane Katrina, and kept pursuing what public-health workers term “harm reduction” long after many AIDS-minded funders moved their money abroad. Haywood and her staff stashed condoms, sex-education materials, and other work supplies at their office, although it’s not where they spent most of their time—much of their real work takes place in the streets, through outreach and education. Now, as Haywood pulled up, it wasn’t clear how much of the office would be left.

What she found at the scene, still smoldering, had the potential markings of arson. The flames had skipped the steep gray staircase, and climbed their way along the walls of the outreach room, where, Haywood says, various reproductive-health models had been removed from a closet, stacked in a pile, and set ablaze. Police escorted Haywood through the still warm rooms, which appeared to have been ransacked. She felt dazed. The walls looked blistered and brown; a ceiling fan hung with only two of its five blades left, both drooping like a sad mustache. Haywood is still trying to make sense of the idea that someone could have set the fire deliberately. “You would target our outreach room?” she asked. “You would stack our breast models, our reproductive models, and burn them? You would pile up all of the posters that had to do with activism and women’s health, and burn them?”

The New Orleans Fire Department reportedly issued a statement noting that the remains of the office showed signs of arson: the fire had multiple points of origin, and it looked as though an accelerant had been used, though no suspect was ever formally identified. In time, the building’s scorched rooms came to reflect the broader uncertainty facing groups like Haywood’s, which rush to do triage amid very real aggressions. Haywood is up against some daunting statistics. The American South has less than a third of the country’s population, but in 2010 it accounted for nearly half of the thirty-three thousand new AIDS diagnoses nationwide. African-Americans made up around twelve per cent of the national population that same year, according to the Centers for Disease Control and Prevention, but accounted for an astounding forty-four per cent of all new H.I.V. infections among adults and adolescents. And an alarming nine out of the ten U.S. states with the highest AIDS-fatality rates are in the South. So what’s going on?

One of the strangest things about the H.I.V. epidemic in the Deep South—from Louisiana to Alabama to Mississippi—is how easily most Americans have elided it, choosing instead to imagine that the disease is now an out-there, elsewhere epidemic. It’s a plague from some anterior time, some exterior continent, something our kids will read about in books or that we glimpse as history in the movie “Dallas Buyers Club.” Only recently, in the face of unrelenting statistics about the convergence of H.I.V./AIDS rates in the Deep South with almost every other relevant public-health risk—from obesity to heart disease and diabetes—have many of the mega-funders taken a different tack. They are learning that the people doing the grunt work of prevention, education, and treatment often do so in an environment of fierce hardships, the most obvious of which is a lack of funding.

That’s why Deon Haywood came to New York last week, wheeling her well-travelled black suitcase, with “LOVE LOVE LOVE” etched in pink across it, into the office of the Elton John AIDS Foundation, in SoHo. The foundation has become a major supporter of Women with a Vision; after the fire, it rushed a grant to help the group rebuild. (Many in the community lent aid, too, and local and national reporters paid attention.) Before New York, Haywood had, in recent weeks, wheeled her way through Oklahoma and Philadelphia, meeting with funders and speaking to conference crowds. “Elton is really passionate about this,” one of the foundation’s employees told me, sharing its road map for “a very aggressive” approach to addressing the domestic intersection of AIDS and various forms of stigma and inequality.

Other prominent groups, too, have been making an effort to turn the H.I.V./AIDS-prevention conversation inward. Last month, the Clinton Global Initiative University hosted a panel on prevention strategies. It was moderated by Lisa Biagiotti, a filmmaker whose recent documentary on the epidemic, “deepsouth,” burrows into the crevices of culture, where statistics can’t quite creep. To shoot the film, Biagiotti spent more than two years driving some thirteen thousand miles and interviewing four hundred-plus people. The lush tale that results centers on a small handful of them, including a gentle-minded H.I.V.-positive college student and a Birmingham pastor who preaches that AIDS is “God’s curse to homosexual life.” She’s screened the film nationwide, using it as something of a stethoscope—a public-health tool as well as a conversation starter in places where shame often reigns.

One resonant scene in “deepsouth” examines the stigma as a twenty-first-century problem in the particular religious-political-cultural brew of the region. A young man sits in a small group-discussion circle at a retreat for H.I.V.-positive individuals in rural Louisiana. He looks out and says, “I’m not very close to a lot of people because I think, you know, like, maybe I’m contaminated,” to which the organizer replies, “You’re not contaminated, baby, everybody else around you is contaminated.”

Once, shortly before Hurricane Katrina, Deon Haywood found herself speaking to a coffee-and-pearls crowd in St. Tammany Parish, Louisiana. As she recalls it, the wealthy white retirees who had agreed to hear her speak were considering donating to Women with a Vision, or maybe becoming volunteers. Haywood gave her usual spiel about the epidemic, and about how she saw it as intertwined with other social measures of well-being; about access to health care, and safe housing, and freedom from domestic violence; about the things people do for survival when they are broke and desperate. The women stared back at her. Their expressions were “so flat,” Haywood recalls.

“One of them was, like, ‘Why are we discussing this?’ ” Haywood says. Others piled on, pointing out that if a woman has sex for money she takes on certain risks. “This has nothing to do with me,” Haywood recalls one of the women saying. “I’m married to my husband.”

Haywood said, “Well, I’ll tell you this. Black men aren’t buying sex where I work, they’re not buying it in their neighborhood like that. What I do see in this area, where sex workers are, is so many white men coming from the Central Business District in their Range Rovers or their Mercedeses. And that blow job? That could be one of your husbands. So you may think it doesn’t affect you, but, hey, it could.”

Suddenly, the women were leaning in, curious. “They were, like, ‘I’ve never thought about that,’ ” she told me now, tilting forward in a blue plastic chair at the Elton John AIDS Foundation. Behind her was a framed photograph of the singer smiling and beside an orchid. That conversation, to Haywood, had been a moment of breaking through, of moving across thresholds, that seems increasingly rare.

So back to why: Why the South, and why a plague that some thought we had under control? “If you think about where the rates are highest, it’s in the most conservative places,” Haywood told me. “It’s where the conversation is not being had, and where shame and stigma exist because of religion, because of culture, because of racism, because of homophobia—you name it, it exists for those reasons.”

The vast overlap between the social ailments of the South (like poverty) and the physiological ones (like disease) is not merely theoretical. “When you think about the South, we have the highest rates of H.I.V.,” Haywood continued. “But we also have the highest incarceration rates, and we don’t have comprehensive sex education—we have abstinence-only education.” Nationally, one in seven individuals living with H.I.V. passes through the correctional system annually, which tends to amplify their risk factors. Louisiana has the highest incarceration rate not only in the country but in the world. It’s another reason that Haywood’s group has become increasingly involved in broader policy work. (Their stated mission is “to improve the lives of marginalized women, their families, and communities by addressing the social conditions that hinder their health and well-being.”)

Biagiotti’s film reaches parallel conclusions. “H.I.V. is really an indicator, or a symptom, of so many other social issues,” she told me not long ago. “H.I.V. has been my G.P.S. to some of the most fragile places in America.” In one of her film’s more pedagogical moments, she follows Kathie Hiers, the C.E.O. of AIDS Alabama, who spends much of the year on the road, lobbying for increased research and prevention funding for her state. Hiers explains the region’s epidemic in three simple sentences.

“We don’t have high-paid lobbyists,” she begins. “We don’t have a lot of money. Here’s some of the things we do have: the most people living with H.I.V. and AIDS, the most poverty, the most sexually transmitted infections, the most people without health insurance, the most vulnerable populations, the fastest-growing epidemic, the least access to health care, the highest mortality rates, and the least resources to deal with this crisis.”

Deon Haywood’s mother sent her a text message recently, when Haywood hadn’t called in a day or two, asking if everything was O.K. “I know you’re an adult,” the text read, as she recalls it. “But the more public you are the more I worry.” Her mother’s fears are hard to dismiss. It’s an odd thing to reckon with—the idea that, in 2014, domestic efforts to address a public-health problem could put a person at risk. “A little bitter” is how Haywood describes the feeling. Losing her former office after Hurricane Katrina knocked Haywood off balance for a while; Katrina in itself, she said, already gave everyone a certain P.T.S.D.

The parallels between the crises resonate. The most enduring images of the storm, perhaps, are those of the families, in neighborhoods that were mostly black and poor, standing on rooftops waving American flags, in search of aid as the flooding mounted—some having scribbled “The Water Is Rising” in chalk. Most of the people of means had already got onto the highway, or into a lifeboat, or on an airlift. Not long ago, when it came to H.I.V./AIDS, a broad swath of Americans stood together on that other hell-swept roof; then, slowly but surely, many of those with the resources to catch a ride or a break did, mercifully, and the disease was slowly brought under control. But, when Deon Haywood and her colleagues work the streets of New Orleans—“My job is not to save, it’s to assist,” she says—they’re reminded daily of how many people still stand on the roof as the epidemic quietly rages and the water creeps up—another disaster that is natural-born and yet, in countless ways, man-made.

Above: Deon Haywood in the Women with a Vision office; May 24, 2012. Photograph by Eliot Kamenitz/The Times-Picayune/Landov.