America’s Hidden H.I.V. Epidemic – The New York Times


Last year, the Centers for Disease Control and Prevention, using the first comprehensive national estimates of lifetime risk of H.I.V. for several key populations, predicted that if current rates continue, one in two African-American gay and bisexual men will be infected with the virus. That compares with a lifetime risk of one in 99 for all Americans and one in 11 for white gay and bisexual men. To offer more perspective: Swaziland, a tiny African nation, has the world’s highest rate of H.I.V., at 28.8 percent of the population. If gay and bisexual African-American men made up a country, its rate would surpass that of this impoverished African nation — and all other nations.

The crisis is most acute in Southern states, which hold 37 percent of the country’s population and as of 2014 accounted for 54 percent of all new H.I.V. diagnoses. The South is also home to 21 of the 25 metropolitan areas with the highest H.I.V. prevalence among gay and bisexual men. Jackson, the capital of Mississippi, the country’s poorest state, is best known for blues, barbecue and “The Help.” It also has the nation’s highest rate — 40 percent — of gay and bisexual men living with H.I.V., followed by Columbia, S.C.; El Paso; Augusta, Ga.; and Baton Rouge, La. In Jackson, a small city of just over 170,000, half a dozen black gay or bisexual men receive the shock of a diagnosis every month, and more than 3,600 people, the majority of them black men, live with the virus.

The South also has the highest numbers of people living with H.I.V. who don’t know they have been infected, which means they are not engaged in lifesaving treatment and care — and are at risk of infecting others. An unconscionable number of them are dying: In 2014, according to a new analysis from Duke University, 2,952 people in the Deep South (Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Texas) died with H.I.V. as an underlying cause, with the highest death rates in Mississippi and Louisiana. Among black men in this region, the H.I.V.-related death rate was seven times as high as that of the United States population at large.

Sturdevant, born and raised in Metcalfe, a tiny Mississippi Delta town of about 1,000, understands all too well the fear, stigma and isolation that can come with being a black gay man in the South. “Growing up, I was taught that God was not fixing to forgive a person who was homosexual,” Sturdevant said. “The Bible supposedly said you’re going straight to hell, automatically, there’s no forgiveness. There were several times I thought about suicide. There were several times I wanted to get sick and die. Finally, my thought was, I just want to get out of here.” He moved to Dallas, and then to Memphis.

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Cedric Sturdevant at home in Jackson.

Credit
Ruddy Roye for The New York Times

When he learned he had H.I.V. in 2005, Sturdevant knew little about the virus and was too depressed and ashamed to tell anyone at first. When his partner died the following year, he let the disease consume him. “I was weak, had a fever of 103, couldn’t even keep down water,” he recalled. Sturdevant has shared his story too many times to count, to let young men know that he has been there, too, and to help them understand that they can survive this plague. He also knows that many black gay and bisexual men have been rejected and discarded, and has wrapped his arms around as many as he can grab hold of, treating them like family. Sturdevant has two daughters from an early marriage and three grandchildren, but he says he feels just as strongly about his 16 or so unrelated “children,” most of them living with H.I.V. He feeds them, sometimes houses them, but mostly listens to them. “Young black men feel abandoned and need someone they can believe in and who believes in them,” Sturdevant said as he drove past fields of fluffy cotton, his hands resting lightly on the steering wheel. “I told God I want to be able to help guys like me, that didn’t grow up with their father, and they started coming to me, wanting to talk. After a while, they would bring other people to me and say, ‘Dad, can you help him, too?’ ”

Sturdevant moved his seat back, preparing for a long drive, and adjusted the radio to 107.5, the local R.&B. oldies station. Toni Braxton’s wail — “I wish you’d hold me in your arms like that Spanish guitar” — filled the car. He was headed to a small town 90 miles east of the city to visit Jordon, an H.I.V.-positive 24-year-old. When Sturdevant himself was at his lowest point, he said, “I looked something like this boy we’re going to see.”

He took a call from De’Bronski, one of the “sons” he has cared for and bonded with. Sturdevant met the young man in 2009 and took him in; he later helped him deal with his H.I.V. diagnosis. “I love you, too,” Sturdevant told him. Then he turned down a dead-end street and pulled up in front of the one-story brick home where Jordon lived. “I’m real worried about him,” Sturdevant said, lowering his voice as he walked up the driveway’s cracked pavement toward the front door. Jordon had recently posted a photo of his skeletal frame on Facebook, asking friends to “pray for me.”

As he stepped into Jordon’s stuffy bedroom, Sturdevant’s eyes scanned from a wheelchair leaning against the wall to a can of Ensure on the bedside table before settling on the young man. He was rubbing his feet, wincing from H.I.V.-related neuropathy that caused what he described as “ungodly pain.” Jordon’s round, hooded eyes were sunk deep into his face. Gray sweatpants pooled around his stick-thin legs, so fragile they looked as if you could snap them in two. His arms were marked with scars from hospital visits and IVs. Over six feet tall, he weighed barely 100 pounds. He smiled slightly when he saw Sturdevant, dimples folding into his hollow cheeks. “Hey, Mr. Ced,” he said, his voice raspy.

In February 2016, Jordon suddenly found himself too weak and tired to attend the community-college classes he had enrolled in; he could hardly lift his head from his mother’s couch. He wasn’t accustomed to being sick and had tested negative for H.I.V. just five months before, so thinking he had a bad cold, he waited weeks before his family forced him to go to the emergency room at a hospital in his small town, where he was tested again. “The doctor said to me, ‘Your H.I.V. is so bad — how could you not know?’ ” Jordon recounted through tears. He ended up in intensive care for three weeks. “I honestly didn’t believe it.” He paused and then added quietly, “It was the worst day of my life.”

With effort, Jordon sat up slightly, untangling himself from a jumble of sheets. Sturdevant asked how he was doing, and he cataloged a laundry list of what he called his “old man” ailments. “I’ve had everything — diarrhea, hemorrhoids, now this neuropathy,” he said. “My body hates me.” Once a month, his mother or grandmother drove him to medical appointments in Jackson, to receive care from providers experienced in treating people living with H.I.V. and to avoid the small-town gaze at the local facilities; there is no Gay Men’s Health Crisis for him to visit in his small town, as there would be if he lived in New York. “Everybody knows everybody here,” Jordon said. “At the hospital, they know my mom and my brother and my grandmother. I would rather be around people who don’t know me.” Too ashamed to admit that he had the virus, Jordon had told few friends about his diagnosis.

“Are you taking your medicine?” Sturdevant asked. For many young men, the H.I.V. diagnosis and the illness are so overwhelming that maintaining a new and unfamiliar regimen of medication can be difficult. Jordon looked down. “Not as often as I should.” When he saw Sturdevant’s glare, he continued, sounding like a little boy. “I hate taking medicine; I hate it. I have to take six pills, now seven, eight, plus a shot —”

Sturdevant cut him off. “We all have to do this, Jordon. Don’t you want to get better?”

Jordon let his head fall back on the pillow. “I know I can get better, Mr. Ced,” he said, massaging his feet. “I just don’t know how everything got so bad.”

Given the advances in research, information and treatment, it seems inconceivable that someone living with the virus today, like Jordon, could look as if he had stepped out of the early years of the epidemic. And yet a series of fateful decisions and omissions, dating back to the discovery of the disease, have led to a present that looks like the past — but only for some.

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Farish Street in Jackson.

Credit
Ruddy Roye for The New York Times

History marks the beginning of the American AIDS epidemic as June 5, 1981, when an issue of the C.D.C.’s Morbidity and Mortality Weekly Report — the authoritative voice of the agency — highlighted five cases of pneumocystis pneumonia (PCP) in previously healthy men in Los Angeles. Healthy people do not contract a disease like PCP, which had been largely confined until then to patients on medication to suppress their immune systems for an organ transplant or cancer patients on chemotherapy. Though not stated explicitly, the language of the report, by omitting race, implied that its “five young men, all active homosexuals,” were white, which they were. But there were two more documented cases, not mentioned in the notice, and these sixth and seventh cases were black — one of them a gay African-American, the other a heterosexual Haitian.

Dr. Michael Gottlieb, the lead author of the report and a renowned physician specializing in H.I.V./AIDS, treated Rock Hudson before he died of AIDS complications in 1985 and still practices in Los Angeles. Gottlieb said he is often asked why he didn’t include in that first report the documented case of the gay African-American man, who had both PCP and cytomegalovirus, a virus that attacks the organs of patients with compromised immune systems. He explains that he discovered the case after the report was finalized. “Until recently, I wouldn’t have thought it mattered,” said Gottlieb, who said that he and others on the front line were grappling with an unprecedented and frightening medical mystery and largely working in the dark. “But in retrospect, I think it might’ve made a difference among gay black men.”

Including gay black men in the literature and understanding of the origins of the disease and its treatment could have meant earlier outreach, more of a voice and a standing in H.I.V./AIDS advocacy organizations, and access to the cultural and financial power of the L.G.B.T. community that would rise up to demand government action. But 35 years of neglect, compounded by poverty and inadequate local health care infrastructure, have left too many black gay and bisexual men falling through a series of safety nets.

This has been true of even the most recent advances. In 2010, the Obama administration unveiled the first National H.I.V./AIDS Strategy, an ambitious plan that prioritized government research and resources to so-called key populations, including black men and women, gay and bisexual men, transgender women and people living in the South. With a mandate to “follow the epidemic,” several pharmaceutical companies and philanthropic organizations also started projects to help gay black men, particularly in the Southern states. That same year, the Affordable Care Act and later the expansion of Medicaid in more than half of the country’s states linked significantly more H.I.V.-positive Americans to lifesaving treatment and care.

In 2011, HPTN 052, a study of 1,763 couples in 13 cities on four continents funded by the National Institute of Allergy and Infectious Diseases, found that people infected with H.I.V. are far less likely to infect their sexual partners when put on treatment immediately instead of waiting until their immune systems begin to fall apart. This “test and treat” strategy also significantly reduces the risk of illness and death. The data was so persuasive that the federal government began pushing new H.I.V./AIDS treatment guidelines to health care providers the following year. And in 2012, the Food and Drug Administration approved the preventive use of Truvada, in the form of a daily pill to be taken as pre-exposure prophylaxis (commonly called PrEP). It has been found to be up to 99 percent effective in preventing people who have not been infected with H.I.V. from contracting the virus, based on the results of two large clinical trials; an estimated 80,000 patients have filled prescriptions over the past four years.

But these measures have not extended to most black gay and bisexual men. A C.D.C. report in February noted that only 48 percent of black gay and bisexual men effectively suppress the virus with consistent medication, and the numbers are even lower for these men in their late teens and 20s. In 2014, nearly one in five black gay men who had received a diagnosis of H.I.V. had progressed to AIDS by the time they learned of their infection — which meant that they were generally very ill by the time they began treatment. Only a small percentage of black people use PrEP to prevent contracting the virus, accounting for only 10 percent of prescriptions; the vast majority of users are white. Many black gay and bisexual men either can’t afford PrEP or don’t know about it — they may not see a doctor regularly at all, and many medical providers haven’t even heard of PrEP.

Turning things around would mean expanding testing and providing affordable treatment for those who are positive — to stop sickness and dying and also to block transmission of the virus. It would also require getting information and medication, including PrEP, to those most at risk. Even more challenging would be reducing the stigma, discrimination and shame that drive gay and bisexual men to hide their sexuality and avoid the health care system — and making sure providers have adequate resources and understand how to care for H.I.V. patients.

“It’s deeply troubling when 50 percent of African-American gay men are expected to get H.I.V. during their lifetime, but it’s also been a clarion call for all of us to improve on what we’re doing,” said Dr. Jonathan Mermin, the director of the C.D.C.’s National Center for H.I.V./AIDS, Viral Hepatitis, S.T.D. and TB Prevention. “What we have been trying to do is ensure that we’re having the greatest effect with the resources we’re provided.”

Few believe there is the kind of energy, leadership, money and political will in the current political climate to fix the situation in the community that has fallen through the cracks for so long. And experts in the field have grown increasingly worried about the new administration’s commitment to fighting the disease. Soon after President Trump’s inauguration, the web page of the Office of National AIDS Policy, the architect of the National H.I.V./AIDS Strategy, was disabled on the White House website. The president’s proposed budget includes a $186 million cut in the C.D.C.’s funding for H.I.V./AIDS prevention, testing and support services. The congressional fight over the repeal of the Affordable Care Act, and the president’s declarations that “Obamacare is dead,” have conjured a disastrous return to even more alarming conditions, like waiting lists for medication. As recently as 2011, the AIDS Drug Assistance Program state-by-state list of people waiting for H.I.V. medication ballooned to over 9,000 people, mostly poor black and brown men in Southern states.

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