Written by Donald G. McNeil Jr.
“I come from the smallest town in Mississippi, in the buckle of the Bible Belt,” said Gerald Gibson, outreach manager at Open Arms Healthcare Center, the only clinic created to serve gay black men in this state.
“Growing up, I didn’t know anybody like me,” he added. “I come from a culture that says you’re going to hell for being homosexual and AIDS is God’s wrath.”
President Donald Trump’s plan to end America’s epidemic of HIV, the virus that causes AIDS, within 10 years is not going to succeed easily in places like this.
Medically, AIDS experts agree, the plan he announced in his State of the Union address is sound. It has twin goals: first, to get every American who is infected with the virus — an estimated 1.1 million people — onto three-drug cocktails that, if taken every day, suppress the virus, keeping patients healthy and reducing almost to zero the odds that they will infect anyone else.
The second goal is to get every American who is at risk — an estimated 1 million people — onto pre-exposure prophylaxis (called PrEP), a pill that, if taken daily, protects almost completely against infection.
But reaching those goals will take a huge amount of money — far more than the $291 million Trump requested in his 2020 budget proposal. Moreover, it will require courageous political leadership, not just from the White House, but from every statehouse and city hall in the nation.
In the past 15 years, the epidemic has shifted into groups that are hard to test and even harder to keep on daily medication: men who are closeted, drug injectors, the homeless, the rural poor, the mentally ill and those with no health insurance.
But the group most at risk comprises gay and bisexual black men and transgender women in the Deep South — Gibson’s peers and his clientele. More than half of new HIV infections in the country each year now occur in the South, according to the Centers for Disease Control and Prevention, and often in rural areas.
Many of the newly infected are young black men. Nationally, gay and bisexual black men face a 50 percent lifetime risk of HIV infection. The epidemic cannot be halted, experts say, unless those men can be found, educated about the disease, persuaded to protect themselves and their sexual partners, and helped to do so.
That is often not easy.
“I had an individual hit me up on Instagram for help — he’s positive,” said Gibson, referring to a man infected with HIV.
“I said: ‘Come to the clinic. If you don’t have transportation, I’ll send a car.’ He said: ‘It’s not that simple. My family thinks I can be healed religiously.’”
Gibson paused, then said, “He’s not on medication because they think they can pray the HIV away.”
More than 80 per cent of all new infections are transmitted by people who don’t know they are infected or who are not on medication, according to the CDC.
— Even Wealthy San Francisco Struggles
San Francisco, America’s model HIV-fighting city, has worked hard to extinguish the last embers of its epidemic. It may not be enough.
In the 1990s, the city had over 2,000 new infections a year; it has reduced that figure to about 200. “But we’re plateauing,” said Jeff Sheehy, a former city supervisor and an AIDS activist who is HIV-positive. “We’ve hit a wall. All the gay white boys in the Castro are on PrEP or linked to care, and now we have to reach the hard-to-reach.”
Twelve per cent of young gay men among the city’s homeless are infected. Some undocumented immigrants fear deportation and avoid clinics. Many HIV-infected women have histories of drug use, beatings and rape; they are too traumatized to organize their lives around pill-taking.
“HIV is now a disease of poverty, and you can’t separate it from people’s other issues,” Sheehy said. “When you have schizophrenia and are homeless and use heroin to get to sleep and speed to wake up, HIV is just one of your problems.”
In response, San Francisco has a corps of “navigators” who visit homeless encampments and bang on doors in residential hotels to find and physically escort elusive clients to doctors’ offices and pharmacies.
The city employs case managers who fill out complex insurance and Medicaid paperwork to pay for drugs and lab tests. It has opened a “trauma-informed” clinic exclusively for HIV-positive women who have suffered abuse.
For the uninsured, the city has its own taxpayer-supported health insurance plan. In November, the city passed a new tax on major businesses to raise $300 million to house the homeless.
So what of the rest of the country, where most municipalities have only a fraction of San Francisco’s resources?
Both financially and culturally, Jackson is at the opposite end of the HIV care spectrum. And Mississippi officials know it.
“People want us to jump to being San Francisco right away, and we’re just not there,” said Dr. Thomas Dobbs, chief of the Mississippi state health department.
About a third of gay black men in Jackson are infected, he said. (Although its population is only 170,000, Jackson is the state capital, and the state’s biggest city; it has some gay bars and three HIV clinics.)
Outside Jackson, doctors trained to treat HIV patients are rare. When Dobbs practiced in Hattiesburg, in the southeastern part of the state, he said, some patients drove almost four hours to see him.
Wages in Mississippi are so low that many full-time workers could be on Medicaid. But the state Legislature rejected Medicaid expansion.
In 2016, the health department’s budget was cut by 35 per cent; it has third fewer employees than it once did.
The state receives some federal aid for HIV treatment, but almost all of it must be spent on medicine. Little is left for the services Dobbs said he would offer if he had more money: new clinics, PrEP for all takers and hiring doctors, epidemiologists, case managers and counselors.
But financial barriers are just one obstacle; legal and cultural obstacles are bigger.
— Perplexed by Condoms
Basic sexual knowledge is limited. By state law, sex education is abstinence-focused; condoms may be mentioned, but not distributed.
Gibson was escorted off a junior college campus when he handed out condoms and demonstrated putting them on a plastic model. “And that was to adults!” he said.
For a study, Dr. Leandro A. Mena, Open Arms’ medical director, asked dozens of gay Jackson men to put condoms on a plastic penis; 90 per cent did it wrong, he said.
“They opened it with their teeth, or they didn’t check the expiration date, or they used a lube that deteriorates latex,” he said. “Many had never used one.”
In New York, residents routinely see subway ads for PrEP, some of which show black men with their arms wrapped lovingly around each other.
“That would definitely not be possible here,” said Dr. Sandra Melvin, Open Arms’ chief operating officer.
Dobbs agreed, admitting that his department puts coasters endorsing PrEP in gay bars and public service ads on gay dating sites like Grindr. “But we don’t put our state brand on it,” he quickly added, fearing a backlash from the Legislature.
There are also psychological barriers.
An HIV diagnosis — like a cancer diagnosis — is inevitably a shock, and many men disappear after a positive test, too shaken to start treatment. Without navigators, finding them again is hard.
Also, in Mississippi, knowingly infecting someone with HIV can mean 10 years in prison. “People don’t even want to get tested because if they know their status, they’re responsible,” Gibson said.
Moreover, some people do not want to be seen with HIV drugs. “In Jackson, a lot of down-low guys have girlfriends,” said Aaron Jones, an Open Arms phlebotomist. Those men avoid the clinic.
Jacqueline Wilson, a clinic receptionist, discovered she was infected after catching her ex-husband in bed with a man. “A lot of women are afraid to be on the meds,” she said. “Afraid of what people will think, afraid of what the doctor will say.”
And distrust of the public health system is intense. “People have heard of the Tuskegee experiment,” said Regi Stevenson, another receptionist, citing an infamous scandal in which federal health officials let black men stay infected with syphilis for decades. “My grandfather won’t go to a doctor until he’s almost dead.”
Despite the obstacles, 85 per cent of Open Arms patients achieve viral suppression, Mena said, taking their pills so faithfully that the virus cannot be found in their blood.
To reach that goal, the clinic has to offer extra services: counselors to remind clients to take their pills, transportation for those who don’t own cars and a food bank offering weekly food packages, since many patients are so poor they skip meals and then will not take pills that may trigger heartburn.
Open Arms would like to have an on-site pharmacy, too, Mena said, but has not received a license yet. Mostly, he said, a clinic must offer the right attitude.
“People don’t come back to clinics where the nurse makes you feel guilty for sleeping with men, or keeps saying ‘he’ when it’s ‘she,’ or threatens to stop your meds if you don’t take them all,” he said. “People with HIV are still people.”
Louisiana, next door to Mississippi, goes further: Patients whose blood tests prove they are taking their pills daily get paid. “For some folks, that’s controversial, but it works,” said Dr. Alexander Billioux, a Louisiana assistant health secretary. “And we’re not sending anyone on luxury vacations. It’s about $25 a month.”
No matter what tactics a state employs, “medication has become the simple part of HIV,” Mena said. “What’s been missing is the political will.”