“The night I found out, I slept one and a half hours,” recalls D, a 29-year-old black gay man.
He’s talking about being diagnosed with HIV, the virus that causes AIDS.
“Even though I work in public health and tell people daily that HIV is not a death sentence, that first night that’s all I could think of,” says D. “This has to be wrong, I thought. I work in public health. This can’t happen to me.”
D, who requested anonymity, says he contracted the virus when a condom broke during sex. Two weeks later, he was tested for two sexually transmitted infections (STIs) – chlamydia and gonorrhea – but not for HIV. Shortly afterward, he went back for an HIV test and found out that he had the virus.
Soon after his diagnosis, D moved to Atlanta, which also happens to be the epicenter of a re-emerging national HIV crisis.
According to the latest CDC HIV surveillance report released this spring, metro Atlanta has the fifth-highest rate of new HIV diagnoses. And that statistic may understate the problem. Patrick Sullivan, an Emory researcher and former CDC director of HIV surveillance, says, “Atlanta has one of the most intense epidemics in the country.”
Three of the five core metro Atlanta counties – DeKalb, Fulton and Clayton – are among the top counties nationally in rates of new HIV diagnoses.
What sets Atlanta’s epidemic apart, says another Emory researcher, Travis Sanchez, is how severely the new diagnoses are concentrated within a specific population: young black men who have sex with men (MSM).
The combined problems of poverty and lack of access to health care in Atlanta are the driving forces behind the HIV epidemic, and they disproportionately affect the black community in Atlanta, experts say.
“We think that HIV is no longer a death sentence, and in the era of antiretroviral drugs, we think that no one is dying,” says Emily Brown of the LGBT advocacy group Georgia Equality. “But the reality is that in the black community, HIV is advancing to AIDS for many, and people are dying. No one is talking about it.”
Atlanta is home to a large black gay population, a community in which transmission of HIV is high. Also, a recent study by the Brookings Institution, a Washington-based think tank, found Atlanta to have the highest income gaps between rich and poor, and many whose income is below the poverty line do not have access to health insurance. Georgia has among the highest rates of uninsured residents in the United States, and has rejected Medicaid expansion under the Affordable Care Act.
In 2013, Fulton and DeKalb counties had the highest number of people living with HIV diagnoses in Georgia – 14,695 and 6,116, respectively. These two counties also had the highest numbers of new HIV diagnoses in Georgia, with Fulton at 667 and DeKalb at 414, according to the latest figures from the Georgia Department of Public Health.
Public Health says that while there is cause for concern about the increase in HIV cases, the change may come partly because we’re getting better at tracking the number of infections. A more comprehensive reporting system has resulted in more accurate reporting of HIV cases to the CDC, state officials say.
‘We lack support’
Understanding why the black MSM community in Atlanta is so heavily affected by HIV remains at the heart of Sullivan’s and Sanchez’s research.
“Nationally, 1 in 4 new diagnoses of HIV are coming from young people, primarily gay men or MSMs, between the ages of 13 to 24,” says Sullivan. “Furthermore young black gay men bear the greatest burden of disease, accounting for twice as many diagnoses as white or Hispanic counterparts.” The same trend is likely present in Georgia, he adds, and it could be even worse than elsewhere.
Since 2010, with the inception of AIDSVu, a mapping project led by Sullivan, researchers have worked closely with state and local health departments across the country to document the nation’s HIV crisis in the context of income and education, both of which are linked closely to the spread of the virus.
And research by Sullivan and colleagues Adam Vaughn and Eli Rosenberg found that black MSMs perceive more anti-gay stigma than their white counterparts. People’s concerns about being stigmatized may make it harder to reach them if they are in denial about their illness or if they lack support, says Sullivan.
“We lack support. Being gay is not accepted at all,” D says of being gay and HIV-positive in the black community.
He moved to Atlanta partly to keep relatives and friends back home from finding out he was HIV-positive. It was only this past Thanksgiving, 18 months after the original diagnosis, when D felt comfortable enough to disclose his status to his father. And at home, he says, he still puts his medications in other bottles so guests don’t accidentally find out what he’s taking.
“When you’re black, you go to black schools, stay in the same circles,” says Lamar Yarborough, a 23-year-old black man and community organizer who lives in downtown Atlanta. “Unless you break out, this is what you know.”
Yarborough was diagnosed with HIV just before his 18th birthday, after growing very ill and being admitted to the hospital. He found that in addition to being infected with HIV, which had progressed to AIDS, he also had Kaposi’s sarcoma, a virally transmitted cancer closely associated with AIDS. At the time of his infection, Yarborough says, he was sleeping with both men and women, and he’s sure that the disease was sexually transmitted.
“Getting diagnosed means that you are gay in the [black] community,” Yarborough explains. He recalls being shocked. “I thought, oh gosh, it must be the gay disease.”
But Sanchez emphasizes that any stigma associated with HIV does not explain the significantly high number of newly diagnosed infections – or the overall high incidence of the virus – in the black MSM community.
Poverty a barrier to care
Young black MSMs are more likely to come from poverty than their white counterparts, says Public Health’s director of health protection, Dr. Patrick O’Neal. Members of this group, if infected, would have greater difficulty affording the compulsory care they need to be healthy and continue with daily life.
“Initial linkage to care isn’t as disparate as the retention of care,” O’Neal explains. “To be on some HIV medications, you need to have a minimum intake of 500 calories per meal. You need good nutrition, you need housing, access to transportation, and you may need psychological or spiritual support.”
The lack of economic opportunity for some in Atlanta plays a large role in the transmission of HIV, says Dr. Carlos del Rio, co-director of Emory’s Center for AIDS Research and an infectious diseases physician.
“If you are poor, you don’t have a place to sleep, and you don’t have the means to feed yourself, HIV is not your priority,” says del Rio. This contributes to later testing, late-stage diagnoses and progression to AIDS, he explains. Radio station WABE in Atlanta reported recently that half the patients who test positive at Grady Memorial Hospital’s FOCUS HIV testing program already have full-scale AIDS on the day they are diagnosed with the virus.
“We need jobs, we need more education, and we need more information,” del Rio says.
But even D – who is educated, employed, has health insurance and has been very proactive about his care from the beginning – says he was surprised how difficult it was to get into care in Atlanta. “Here you have to follow 10 different steps to get an appointment,” he says.
D says Atlanta should be more strategic about quickly arranging care for people just diagnosed with HIV. “I know so many people who tell me they’ve spent hours waiting to be seen in a health department or public clinic,” he says.
Solutions across sectors
In the era of antiretroviral drugs, D is living proof of his mantra: HIV is not a death sentence. After discovering side effects from the first medication he was taking, D decided, in consultation with his doctor, to be placed on another one. Within six weeks of this switch, D says, his viral load went from above 100,000 to undetectable.
A recent study estimates the average lifetime cost of $326,500 for HIV-related care for a person diagnosed at age 35, with monthly costs ranging from $1,854 to $4,545.
Government programs like the Ryan White HIV/AIDS Program are in place to help those without health insurance or financial resources to pay for meds. And there has been some success in getting insurers to lower out-of-pocket costs for patients who purchase health insurance through the ACA’s marketplace. But a treatment regimen depends heavily on the stability of a patient’s life, and those in precarious circumstances are at risk.
For Lamar Yarborough, this is a daily reality. “I distinctly remember being in the ICU and being told my insurance had been cut,” he says. Now supported by the Ryan White program, Yarborough says he’s always had a backup plan for being able to afford his medication in case funding gets cut. He is enrolled in Job Corps, where is he completing his GED and developing skills in business administration. He will graduate from the program this month.
Yarborough strives to eat well and stay healthy. He is grateful for the care and support he has received from clinicians at the Ponce de Leon Center, an HIV/AIDS clinic in Atlanta run by Grady Health System. “I was at the Ponce Center every day for two years,” he says.
Clinics like the Ponce Center are key in moving treatment forward, says del Rio. Broadly defined as a medical home, the Ponce Center is a one-stop shop so patients don’t have to go from place to place to get what they need. The center is staffed with HIV specialists and professionals who are able to coordinate HIV care with any necessary counseling or mental health treatment as well as assistance for housing or financial aid.
O’Neal of Public Health says efforts at the state and federal level are well under way to increase access to HIV testing, initial care, and long-term care to high-risk minority populations. Georgia is one of eight states participating in the federally funded Care and Prevention in the United States Program (CAPUS).
This program has produced the Metro Atlanta Testing and Linkage Consortium (MATLC), which meets quarterly to coordinate and expand testing and care in high-risk areas across five counties in metro Atlanta. At the county level, del Rio mentions another group, The Fulton County Task Force on HIV/AIDS, which is trying to prevent transmission and spread of HIV by addressing things like public education.
Good solutions will come from across the sectors, bringing together community health and academic organizations, he says.
Still others say the matter is even more complex. The prevalence of HIV in the black gay community has deeper roots than just stigmatization, poverty, or the need to adhere to medication routines, says longtime Atlanta black LGBT activist and community organizer Charles Stephens.
Beginning with the 1980s epidemic, Stephens says, fewer resources were allocated to the black gay community due to disproportionate funding – the consequences of which the metro Atlanta community is facing today. “We can’t talk about HIV prevalence without talking about community institutions to foster resilience,” Stephens says.
‘Don’t touch me, I’m pregnant’
Research by Sullivan, Sanchez and their colleagues found that in Atlanta, young black MSMs experience a significantly higher incidence of HIV than their white peers. But that’s not because of more reckless behavior or greater promiscuity. Instead, the racial disparity is linked solely to health insurance status and the “partner pool,” the network of people an individual is likely to have sex with.
Among participants in the study, fewer black MSMs had health insurance than did their white peers, and having coverage affects access to broader STI testing as well as to HIV prevention services. The black MSMs were also more likely to have sexual partners who were themselves black MSMs. Because HIV is already so prevalent in this partner pool, the network of HIV transmission is strengthened with each interaction, Sanchez explains.
Sullivan, Sanchez and their colleagues suggest that in the fight to reduce HIV in Atlanta, there has been too much focus on behavioral interventions, such as getting individuals to use condoms and practice safer sex. These things are important, but the experts propose a shift of emphasis toward larger-scale biomedical interventions, such as promotion of HIV testing for at-risk youth as young as 15, as well as improving linkage to care.
Yarborough, HIV-positive for several years now, has faced a number of misconceptions around his diagnosis. “I’ve gotten from, ‘Don’t touch me, I’m pregnant,’ to ‘You don’t even look sick.’ “He says he was recently asked by a physician to refrain from playing contact sports with organized groups. And a nurse even asked that he put his used tissues in a biohazard bag. “If you’re not an HIV specialist, you’re ill-equipped” to help patients, Yarborough says.
Georgia is ranked fifth among the 50 states for incidence of HIV diagnoses. Statewide access to HIV specialists is even more problematic, with few HIV specialists to manage care of the currently 51,510 people in the state living with HIV.
Yarborough also thinks that current public health messages about prevention, such as campaigns advocating condom use, are not enough. He says the current approach indicates poor understanding by public health officials of the black community’s mistrust of the health care system and belief that blacks are marginalized.
Most immediately, D says, public health campaigns at clubs and restaurants need to be smarter and more explicit to get people in the gay black community to take action to protect their health.
Another strategy that D suggests is to encourage people who are considering becoming sexually intimate to get tested together first. “Condomless sex is thought to be bad,” he says. “But if you’re in what you think is a monogamous relationship, this is often a norm.”
Last year, the CDC introduced clinical guidelines for the much-talked-about PrEP – which stands for pre-exposure prophylaxis – an HIV prevention pill that can be taken daily by uninfected people who are at risk of being exposed to the virus. So far, studies have found that PrEP can reduce the risk of HIV infection by up to 92%.
The prevention method, seen in the form of the pill Truvada, can help reduce the risk of getting HIV by stopping the virus from taking hold. Truvada is an antiretroviral medication, and it is still mainly used on people who are already HIV-positive, because it limits the virus load.
Many insurers are willing to cover the costs of Truvada, but some require authorization before approving coverage, according to the nonprofit HIV/AIDS journal Positively Aware. Gilead, the maker of Truvada, also has a medication assistance program to provide access to the medication for those who are not insured as well as a co-pay assistance program for those who are insured. Without insurance, an individual can expect to pay more than $1,000 monthly.
D found out about PrEP shortly after he was diagnosed, and he says it’s a good idea. But he also thinks there needs to be more public education about it, and he would like to know more about the long-term effects of the drug.
“For individuals who are at higher risk and [HIV] negative, what other choice do we have?” he says.
Sullivan’s and Sanchez’s research suggests that administering PrEP on a wide scale to at-risk individuals could be very effective in cutting down the rate of infections in Atlanta. “There are implementation challenges but it’s not impossible,” says del Rio, who notes that the current funding structure for prevention doesn’t make this a viable option right now.
A clinic like the Ponce Center, he explains, receives funding only to treat patients who already have HIV and does not have the financial resources to administer a preventive measure like PrEP to HIV-negative patients. Unlike San Francisco, which was at the heart of the HIV epidemic of the 1980s and ’90s, Atlanta does not have its own city health department and would have to rely on coordination between county departments, adding to the complication.
And as many people who work on HIV care emphasize nationwide, Emily Brown doesn’t think that PrEP is a magic bullet or miracle drug for the HIV epidemic in Atlanta. With the barriers that many black MSMs already face in the way of access to HIV care, access to PrEP is just another hurdle, Brown adds.
“Right now it’s still unclear how PrEP is going to be available based on economic diversity,” says Brown. In Atlanta, Brown says, PrEP is still most easily accessible in private clinics, for those who have health insurance. For the black MSM community, the gap between eligibility for the preventive medication and actual uptake is wide. “Who is going to make this [PrEP] available to black gay men?” says Brown.
In addition to AIDSVu, Atlanta is one of the first three host cities for the HIV Continuum Map, another cutting-edge public health surveillance project that is able to break a city down by ZIP code to look not only at new diagnoses within a city, but also at late HIV diagnoses, what linkage to HIV care within a city looks like, engagement in HIV care, and viral load counts.
“Maps are really powerful,” says Sullivan. “I really believe in the power of data for advocacy to direct programs better.”And that’s exactly what people like Emily Brown are doing. After establishing ACFLY, a group that meets regularly throughout the year to improve services for youths in metro Atlanta, last year Brown and her colleagues recognized the need for an HIV subcommittee to better address the needs of HIV-positive young.
And this April, she helped to launch the Youth HIV Policy Advisors Program, which will match 20 elected officials – ranging from city council members to U.S. and state representatives, school board members, prominent pastors, as well as allied health organizations – with 20 people under 30 who are living with HIV in metro Atlanta. The group will receive training throughout the summer before meeting with officials several times this coming fall.
“We want to set up a program where HIV-positive people can support each other at the policy and legal level,” says Brown. “We need a conversation around funding for research and development in HIV prevention. We need conversations around the root causes of youth HIV in metro Atlanta, including lifting needle exchange bans, improving sexual education and increasing housing and access to health care for those at highest risk.”
Community approach needed
While he believes that HIV is the moral issue of his generation, Stephens also places emphasis upon understanding and respecting the black gay community overall. He is founder of The Counter Narrative Project, a platform that seeks to change the conversation around black gay men by giving them a voice.
“Atlanta has such potential in leading the way and being innovative in how we reduce HIV prevalence in black gay men,” Stephens says.
In light of how HIV has affected him personally, Yarborough says the virus will remain a major focus of his life’s work. He recently founded H.Y.P.E., a nonprofit organization for youths ages five to 30 who are living with HIV.
“I was devastated when I got my diagnosis,” Yarborough says. “If I can help other people go through it, that’s what I want to do.”
D says he now feels he puts greater value on his own life. “I’m not the [sad] story you hear,” he notes. Instead, he’s had considerable success in his life. D bought his first home at 20 and is currently working on his third academic degree.
While the black community could use more role models, D admits that many higher-income individuals like himself live with HIV in silence because shame remains a barrier to honest conversations about HIV within the community.
“Making those who are HIV-positive comfortable enough to come out to a community which is supportive rather than blaming is another key to prevention,” D says. “In the future I see myself coming out,” he adds. “But it’s a process.”
Maithri Vangala is an independent journalist in Atlanta interested in health policy. She was previously an editor at The Health Care Blog. You can follow her on twitter at @maithripriya.