COLUMBIA, SOUTH CAROLINA — If President Donald Trump’s ambitious plan to wipe out HIV transmission in America by 2030 is to have any chance of success, it will have to reach people like Kwanna Dingell’s mother.
In April, she walked into an emergency room in rural South Carolina seven times — and seven times she was refused care. That final time, the hospital called the police, who put the homeless woman in jail. From there, she went back to the same hospital, where she spent 18 days in the psychiatric ward.
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Frantic, Dingell finally tracked her mother down with help from the police, only to find that a hospice nurse was also looking for her, wanting to alert the hospital that Dingell’s mother had HIV. She had kept it a secret — from her daughter, from her community and from health care providers, who may have treated her quite differently had they known she was probably suffering from HIV-related dementia.
Public health now has the tools to eradicate HIV — medicines to protect people from getting the virus, to prevent those who have it from infecting others, and to prolong lives by decades. But it takes a lot more than a pill to reach the “hard to reach” populations, people who 40 years into the epidemic are still most at risk of contracting and spreading HIV/AIDS. These are the stigmatized, the marginalized, the poor, the homeless, the afraid, the addicted and the mentally ill, in rural communities and urban cores.
Unlike the 1980s, the faces of the AIDS crisis in 2019 are not found so much in San Francisco’s Castro district or New York’s Greenwich Village. They are disproportionately black men, and increasingly black women. Some are gay or bisexual and closeted in hostile communities. Many are at risk because of drug addiction and mental illness, in small rural southern towns or in troubled inner cities like Baltimore. Coping with HIV is one of only many challenges in their difficult, chaotic lives.
Eradicating the virus will need to look less like a science experiment and more like a broad social welfare program.
In his budget for fiscal 2020, Trump requested an additional $291 million for his AIDS program and plans to start some work even sooner by drawing about $30 million from the Minority AIDS Initiative fund.
But many doing HIV/AIDS prevention work worry that the approach may not be broad enough, and that rules on spending public funds may not be flexible enough. That’s particularly the case given a trend in some areas, like South Carolina, of moving away from community-based organizations that provide outreach, education and support services like van rides for rural patients who need to travel long distances to get to a clinic. Instead, the money and energy are going to a narrower medical approach.
Wiping out HIV does require pills — affordable pills. And getting people to take the pills and keep taking them day after day also requires support services. It would ideally involve a full-scale attack on poverty, racial, economic and educational inequalities and long-held stigmas against people who have acquired a disease associated with sex, drugs, and risky behavior.
“In some ways we’ve skimmed off the easiest [HIV] populations to take care of,” said Kyle Murphy of AIDS United, a nonprofit that has focused on getting grant money into hard to reach communities where, he said, people still in need of HIV services require more and different kinds of assistance.
The people that the U.S. is missing for HIV care now aren’t so obvious because they’re often not interacting with the health system or proactively reaching out for care, said Amanda Rosecrans, who directs Baltimore City Health Department’s HIV and hepatitis C sexually transmitted disease clinics. These patients are hard to find and hard to keep in care.
Baltimore recently started up a mobile STD clinic that it sends out with the city’s needle exchange vans. Most people who come to the clinic are using drugs, engaged in commercial sex work or both. Many have never had health insurance (though they may be eligible now for free or subsidized coverage under the Affordable Care Act) and haven’t had health care in a long time, Rosecrans said.
The clinic has helped reach them but has not always enabled the consistent, ongoing relationships needed to keep them on AIDS meds for years. “It’s been really hard to keep those people engaged,” she said. “All of the patients who we’ve tried to do HIV treatment on the vans so far, we’ve sort of lost contact with for one reason or another — incarceration, folks that are homeless.” The city is starting to think of some ideas it could test to stay in contact with these people, like giving them mobile phones, but government grants that let them buy pills don’t necessarily let them buy phones.
Given recent biomedical and public health advances, the Trump administration sees the time as ripe for an audacious plan to slash new HIV infections in the U.S. by 75 percent within five years, and by 90 percent within 10. Medicines, if made affordable and taken correctly, can suppress the virus to undetectable levels, reducing transmission. Pre-exposure prophylaxis, or “PrEP,” drugs can prevent infection in people at high risk. New tools let public health officials pinpoint transmission hot spots, and swoop in where HIV infections are spreading most rapidly.
“Today, we have the right data, the right tools and the right leadership, to end the HIV epidemic,” HHS Secretary Alex Azar said at the National HIV Prevention Conference in March.
But for many in rural South Carolina or hard-hit parts of Baltimore — two of the areas specifically targeted in the Trump plan because of high rates of new infections — fancy science isn’t the silver bullet that Washington bureaucrats count on.
“A lot of our clients … are below the poverty level, well below the poverty level. Most are zero-income and a lot of their issues are bigger than HIV,” said Selena Lowery, the lead case manager at the South Carolina HIV Council’s Wright Wellness Center in Columbia, South Carolina, which has been helping the Dingell family. Like her counterparts in Baltimore, she can get people into HIV treatment — but keeping them there means also addressing transportation, employment, and often underlying drug addiction or mental illness.
“If you had to think about, ‘Am I going to go to the doctor or go stand on line for day labor,’ I’m going to go to day labor because I have to eat, and I have to have some place to lay my head tonight,” she said. “If we’re not treating the whole person it’s not going to work.”
But money is limited for HIV-focused organizations — community-based organizations, not just medical clinics — to address these larger needs. The federal Ryan White program mandates that grantees spend 75 percent of their money on core services like doctor’s visits and medication. That leaves 25 percent for emergency financial assistance, transportation or food. Lowery said it’s not enough.
Lenatte Henry, the Wright Wellness Center’s outreach specialist, who spends a lot of her time trying to get the 20 to 30 percent of clients who drop out of HIV treatment back into care, says the main reasons people stop treatment are addiction, homelessness and general financial troubles. Everyday struggles leave little room for keeping track of pills and getting to appointments.
When Wright runs mobile testing clinics in and around Columbia, at sites like a rundown motel where sex workers or people recently released from prison stay, the people who show up are more motivated by the offer of a $5 or $10 gift card — enough for food for a day — than learning about their HIV status.
Even when people are identified as high-risk, getting them on PrEP is hard — only about one in five of the estimated 1.1 million eligible people are taking Gilead’s drug, which costs $20,000 a year. And the racial gap is huge. Black men and women account for about 40 percent of Americans who should be offered PreP, but make up only about 11 percent of current users. White Americans make up about a fourth of those who should be offered PrEP but comprise nearly 70 percent of those who get it.
Gilead in May announced it would donate enough PrEP medicine to treat 200,000 at-risk people for a decade. But critics fear the largess may slow down the adoption of cheaper generics. They contend that Gilead — whose high profits were just the subject of a critical House oversight hearing — could do a lot more to wipe out HIV simply by lowering its drug prices. The company was dogged by similar criticism for its high-priced hepatitis C medications. The PrEP drug Gilead sells for $1,600 a month in the U.S. goes for just hundreds of dollars a month in Europe. Many countries already have access to cheaper generics.
Money is only one obstacle to broad adoption of PrEP. The federal Ryan White program, which serves low-income and uninsured people with the HIV virus, does include wraparound services like emergency housing or mental health. But that law went into effect about 30 years ago to help people infected with the virus; it hasn’t been modified to help those who are high-risk but HIV negative.
Baltimore’s Rosecrans also wants federal funding to be more flexible, so clinics aren’t so boxed in by a patient’s HIV status. Her clinics can’t provide wraparound services for PrEP patients, nor, under current rules, can she combine services all on one site, which would eliminate obstacles for patients who traipse from one place to another to get health care, support and assistance.
And government funding has moved away from AIDS education and efforts to combat stigma, on the theory that the country has largely gotten the basic facts about HIV treatment and transmission. But in wide swathes of the country that’s not the case. People still think AIDS is an untreatable, fatal disease that can be spread through casual contact.
“It’s like going back in time,“ Dingell said of her mother’s community. “They look at it like it’s still the 1980s. They don’t know that there are resources there, that there’s education, that they can live a healthy life. They have no idea, and unfortunately my mother is one of those people.“ Her aunt, she added, always Lysol-ed the bathroom each time her mother visited, afraid of catching the virus. She was one of the few in the family who either knew, or at least suspected, that the woman had AIDS.
Similar anecdotes abound in support groups run by the Wright clinic for HIV-positive women and among gay, bisexual and transgender men. They tell of being shunned by their churches, and of being told, inaccurately, that AIDS is a death sentence and that they should not have babies because they too will die. One woman, Susan Kitchens, said her physician kicked her out of his office a few years ago for fear his other patients would drop him if word got out that he had treated her. Many said their doctors had never heard about PrEP.
“I’ve literally heard physicians say, ‘If that’s the lifestyle you want to live, why do I care if you live or die,’” said one man, who asked to use only his first name, Stephen, because of the stigma he still endures.
The Wright Center has found that stigma, while detrimental to all, has a higher impact on blacks than on whites. Whites feared social isolation; people of color worried about all that plus basic economic survival and losing their jobs, said Wright’s executive director, Bambi Gaddhist.
For children it can be worse. Some have been “cast out of their home” for being gay or bisexual or transgender. They can’t even begin to talk about HIV/AIDS, she said. The abstinence-only education that dominates schools leaves a lot unsaid about HIV prevention and treatment, and there isn’t much funding for what Gaddhist terms AIDS “Basic 101,” based in trusted community settings.
Similar fears play out in Baltimore; people travel across the city to visit an STD clinic to avoid being recognized.
Going directly to the community can make a big difference, Rosecrans said.
“A lot of times patients have had really negative experiences with health care settings, especially if going to an emergency room and getting labeled a drug user. … So, they come to us and we’re nice to them and it keeps them coming back over time,” she said.
But in South Carolina and among HIV workers there are fears that community outreach is being increasingly decimated, not built up.
In recent years South Carolina has cut off funding for Wright’s work with churches; the CDC no longer lets the organization use its grants to lease vans to transport patients to keep them in HIV treatment. There’s a broader shift of funding away from community-based organizations focused on prevention, unless they directly provide medical care. Grant applications often exclude rural jurisdictions because they don’t have the density of disease necessary to get the “bang for the buck” the federal government wants, added Nic Carlisle, the executive director of the Southern AIDS Coalition.
“We have to be really careful,” said Carlisle. “There’s a lot of talk about using federally qualified health centers and the whole medical model,” but the Trump plan is silent on support services that are often better managed by smaller community-based organizations.
“They are nimble, they end up doing more with less, they end up looking more like the communities they are trying to serve. … Unfortunately I think the emphasis on this sort of medical model or medicalization has really disadvantaged them,” he said.
In a recent conversation, Dingell said her mother was still in the hospital. She was barely eating; Dingell wasn’t sure how much longer she would survive. Like many in South Carolina, Dingell had not heard of Trump’s plan to eradicate HIV and was skeptical of how her mother’s community would react. More awareness and services like housing could eventually make a difference. But it’s likely too late for her family.
In an ideal world, “if she took her medicine and didn’t have a stigma around this disease she could have lived a healthy life, she wouldn’t be in this situation. And you know, if they treated her with dignity and treated her as if she was a person with rights to be treated medically,” she said. “But that’s not her reality.”