Cover Story: We need to talk about HIV

On the outskirts of the 30310 ZIP code in southwest Atlanta, a former hair salon plays a key role in helping combat the HIV epidemic. Inside the National AIDS and Education Services for Minorities, or NAESM, Amistad St. Arromand is juggling phone calls, welcoming visitors, and dispelling the new-to-him myth that Ebola can be transmitted via Thanksgiving turkey. For the last two years, Arromand has managed NAESM. Five days a week, the nonprofit offers free HIV and STI testing and help connecting people with care providers. It averages about 20 clients a day who come from all walks of life.

Arromand was born in Haiti and was lured away from his job with the New York City Health Department by metro Atlanta’s low cost of living around 2004. After spending three months volunteering and making safe-sex kits at AID Atlanta, he was asked to set up the Evolution Project. That Midtown center is a more laid-back, less-clinical facility geared toward young people. After a stint consulting, he now oversees NAESM. In the coming year, the southwest Atlanta walk-in center will welcome an on-staff doctor. In the backyard, Arromand hopes to build a community garden. Every day he sees hope and pain.

“When you sit down and talk with the people who come for our services, there is a lot of pain that’s going on,” Arromand says. “There’s a lot of shame and stigma around sex, homophobia, and internalized homophobia. And that’s just generally. When it comes to the black gay men who come into our programs, what I see from them is ... believe it or not it’s a little bit different. Black gay men who come in here, through our doors, I see a lot of shame and fear still.”

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After decades of TV ads, bus posters, and storylines in sitcoms and reality shows about HIV, researchers are reporting that the effort to reach an AIDS-free generation is falling behind in the Southeast, now the epicenter of the epidemic in America. The spike in cases is part of a worrying increase in HIV infections in Georgia, particularly among young gay and bisexual people, what Georgia Equality Director Jeff Graham calls a “community in crisis.”

According to the Georgia Department of Public Health, 32,391 people were living with HIV in metro Atlanta as of Dec. 31, 2012. No group is being harder hit, according to the Centers for Disease Control and Prevention and to new studies by Emory University epidemiologists, than gay and bisexual black men, or men who have sex with men (MSM). Population estimates of gay and bisexual black men are difficult to find and make, and would most likely underreport members of the transgender community. According to data published earlier this year by Emory researchers, more than 10 percent of young black men who have sex with men in metro Atlanta are contracting HIV each year. Most of those cases are concentrated in the city proper, the Emory researchers say. Based on the patterns observed by these epidemiologists, it appears that a young black man who has sex with men in metro Atlanta who starts having sex at the age of 18 has a 60 percent chance of becoming HIV positive by age 30. In 2011, metro Atlanta was second only to metro New York City when it came to new HIV diagnoses among gay and bisexual black men.

Despite these worrisome numbers, health advocates see glimmers of hope. Doctors and patients are finding success in new treatments. The virus is no longer a death sentence and, while life changing, can often be managed like a chronic condition. It’s also preventable, provided men and women have the right tools to be educated and stay healthy. Additional funding is needed. As is political action.

State and county health departments are trying new ways to encourage people to get tested and, if positive, stay in care. Yet there’s practically no urgency among elected officials to tackle the complex problem. Repeated requests for comment from Gov. Nathan Deal about the issue were met with silence. As were requests to Georgia Insurance Commissioner Ralph Hudgens’ office. Fulton County Chairman John Eaves, however, pledged on World AIDS Day, Dec. 1, to create a task force addressing the issue in Fulton County, which is home to the largest number of people living with HIV in Georgia.

Drastic measures are necessary to put metro Atlanta, Georgia, and the rest of the South on the path to an AIDS-free generation. Advocates say that reaching that goal includes better access to health care, comprehensive sexual education, and efforts to combat stigmas at church, home, and in the community. There’s also a new medication that could prevent new infections. Continued failure to adequately address the epidemic will result in more people not knowing their status, more people getting sick, and a public health system continuing to play catch-up with a virus that doesn’t discriminate. The situation is most dire for gay and bisexual black men.

“The word that I’m thinking of is ‘extinction,’” says Rig Rush, a project coordinator at the Evolution Project who is overseeing a study aimed at reducing HIV in black gay and bisexual men, when asked why it’s important to address the issue. “We’ll be eradicated. ... If this goes unchecked, people will continue to die in silence. If it goes unchecked, it won’t become a priority. It’ll continue to be a silent issue, a silent killer like it’s been for 30 years. Unchecked? Point blank, we will die and be forgotten.”

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The first AIDS diagnosis in the United States in 1981 was followed by decades of activism spurring government to take action. Prevention and education efforts followed and practically grew into a pop culture phenomenon in the 1990s. In the 2000s, efforts focused on treatment and stopping the spread of the disease in developing nations. Members of every demographic imaginable have been diagnosed and are vulnerable to its transmission. But throughout the epidemic, the disease has particularly taken root in marginalized communities.

When Patrick Sullivan joined Emory University in 2008, after spending 12 years researching HIV at the CDC, he discovered that he knew just about everything related to how HIV-positive men and women in most major cities find care — except in Atlanta. So he started doing prevention counseling here. Soon after, he noticed firsthand a long-discussed disparity between black and white gay and bisexual men.

“You talk to people about condom use, testing patterns, and black clients were observably more likely to end up with a positive test result with a similar story,” he says. Sullivan applied for a research grant at the university to try to understand why. Keeping in mind that such studies can unintentionally stigmatize a group of people — in this case, gay black men — he and his colleague Eli Rosenberg, along with a team of researchers, started interviewing and keeping in regular contact with a group of black and a group of white gay and bisexual men in metro Atlanta.

Sullivan and Rosenberg discovered that black gay and bisexual men living in metro Atlanta are four times more likely than their white peers to contract HIV. Black gay and bisexual men ages 18-24 are 11 times more at risk.

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“Right now this is a dire situation,” Sullivan says.

They also found that factors other than condom use, number of sex partners, and drug use are contributing to the high rate of HIV infection in black men who have sex with men.

“Even as we look at rates in most of Africa, this is an incredibly high rate of new infections,” Sullivan says. “The prevalence rate by ages 20-24 goes to 30 percent in metro Atlanta. If it’s not your individual decisions that’s driving risk, we’re not going to help you much by saying to use condoms more. ... The old narrative about HIV in black gay men was there was a blaming narrative, that this was a lifestyle choice.”

But based on Sullivan and Rosenberg’s research, that narrative doesn’t hold up. Gay black men reported having fewer sex partners and less unprotected sex. The disparity might be better explained by what is going on at the neighborhood and community levels when it comes to poverty, unemployment, and other social issues, plus the makeup of sexual networks.

Their research found that gay and bisexual black men are more likely to have sex with other black men rather than white men. Because of this, their pool of partners statistically includes more men who could be HIV positive. White gay men are more likely to have health insurance and therefore better access to medication, making them less likely to transmit HIV. Black gay men are less likely than white gay men to talk about their HIV serostatus with partners before sex, potentially because of stigma. Grouped together, these factors create more chances for black men to potentially have sex with a partner who’s HIV positive and thus risk infection.

Attention must also be paid to deeper social issues, such as insufficient mental health resources, poverty, and other factors on the neighborhood and community levels, Sullivan says. According to AIDSvu.org, a website fueled with data from the CDC, there’s a high concentration of HIV cases in areas where poverty and unemployment are high and residents lack proper access to transportation. High numbers of people diagnosed with HIV also list their homes in southeast, southwest, and west Atlanta. The area that includes Atlanta’s urban core is a hot spot, due in part to a large concentration of service providers, including Grady Memorial Hospital. The hospital’s HIV division currently serves approximately 7,000 men and women ages 25 and older. It also treats more than 500 infants, children, and youths younger than 25.

“Public health alone cannot solve the epidemic, and that’s an important point,” says Dr. Patrick O’Neal, the Director of Health Protection for the Georgia Department of Public Health. “It’s going to take a village, a state, a nation, a world to solve this problem, because we’ve got to address these social determinants to achieve that viral suppression we’re after.”

O’Neal was practicing emergency medicine when AIDS first appeared in the U.S. in the early 1980s. He was seeing patients in the final stages of the disease. He didn’t think he would live to see the epidemic end. Thanks to changes in medicine, more immediate and accurate testing, and treatments, his views have changed.

“With the newer drugs that have come out and the fact that they reduce transmission, I think there is a possibility of ending this epidemic in my lifetime,” he says. “That’s my hope. I didn’t have that hope 30 or 35 years ago.”

New drugs that prevent and keep down HIV-positive patients’ viral loads can help, O’Neal says, but systemic social and public health ills must also be addressed. Places such as the NAESM and Evolution Project are small pieces of the network that exists in metro Atlanta to educate people about HIV and then link them to care if they’re diagnosed positive. Though the region has a wide variety of centers where people can be tested and get connected to care providers (easily found via gacapus.com), having medical insurance makes it easier for a person to navigate and afford the regular doctors’ visits required when an HIV-positive individual starts treatment.

Thousands of people living on low incomes still don’t have coverage. Expanding Medicaid would help connect an estimated 600,000 people to health care, but Deal has refused to join the program. During the past legislative session, he ceded his authority to expand Medicaid to the Republican-controlled General Assembly, making it even more difficult for his successor to make health insurance available to more Georgians.

“The southeast cities like New Orleans, Atlanta, Jacksonville, Charlotte, Memphis, and other jurisdictions have seen rapid increases in the rates of HIV and STDs,” says Devin Barrington-Ward, a health equity fellow at the Washington, D.C.-based National Coalition of STD Directors. “Georgia is now No. 1 for primary and secondary syphilis. It’s no coincidence that many of these places are in jurisdictions where Medicaid expansion has not happened. You have a whole swath of people who couldn’t get access to treatment or care they need.”

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Some advocates continue to urge private insurers to convince state lawmakers of the public health and economic benefits of expanding Medicaid. Others, such as Grady Memorial Hospital CEO John Haupert, are looking for alternative options. On Dec. 1, Haupert told a World AIDS Day policy breakfast in Buckhead that the health system was trying to create an alternative program, based on ones in other states, that could be more palatable under the Gold Dome.

Public health and LGBT advocates also want state leaders to fix policy that currently hamstrings researchers’ abilities to better understand teenagers’ sexual behaviors. Doing so, those advocates know, would make prevention funding available. School officials could also revisit sex ed curriculums to ensure that LGBT students are learning about positive sexual health in a classroom setting.

Each year, Georgia passes up more than $400,000 in CDC funding because Deal did not want students to answer sex questions on the federal agency’s Youth Risk Behavior Survey. The biannual questionnaire is randomly administered at high schools and is completely anonymous. In addition to asking about tobacco use and bicycle safety, the survey includes questions about sexual activity; specifically, the age a student first had sex, number of partners, and sexual orientation.

“The governor does not think Georgia parents want their children asked such explicit questions,” Deal Spokesman Brian Robinson said to WXIA/11 Alive in 2013.

“If the state is going to take this cavalier attitude that we’re not going to meet these requirements, then the state should come up with the funding on its own,” Graham says. “Those are the tradeoffs that need to happen.”

Considering that the CDC says people are being diagnosed with HIV as young as age 13, students could benefit from receiving relevant sexual education in school. The state requires school systems to include HIV education as part of their sex education curriculums: “Such standards shall include instruction relating to ... abstinence from sexual activity as an effective method of prevention of pregnancy, sexually transmitted diseases, and acquired immune deficiency syndrome,” the law says. Advocates say such language has created a misconception that schools can only teach abstinence as a way to protect from pregnancy or sexually transmitted infections.

“No one gets a free pass to say Georgia is an abstinence-only state and make it sound like that’s definite and it cannot change,” Graham says.

Atlanta Public Schools teach a curriculum that discusses HIV, STIs, and how to protect from infections using “barriers,” says Daryl Rice, APS’ health and physical education coordinator. But an educational component tailored to helping LGBT students, especially those who have questions about their sexuality or wonder how their sexual behavior could affect their health, is lacking.

“When sex education does take place in school, if you are a heterosexual person and you say, ‘This is how the birds and bees occur,’ OK great,” Arromand says. “If you’re a gay man and you know you’re a gay man, your question is, ‘Well, what about me, where do I fit in?’ Sexual health education should reflect all types of sex that people have.”

Recently hired APS Superintendent Meria Carstarphen says she thinks that the school system’s support services should be more focused on psychosocial assistance, not just discipline.

“Without the education and without knowing that, if I make this choice, this is what can happen ... we as a district have a responsibility to have that be a part of our programming and teaching — and we should do it in a way that’s respectful of the diversity of our student body,” Carstarphen says. “We have to work on making it systemic at a high-quality level, making sure it’s in the coursework, making sure our teachers are trained.”

Rice says that currently, if a student has questions about LGBT-related issues in health class, the individual is directed to speak with adults outside the classroom.

“Every student is treated as a unique individual,” she says. “When issues like that come up in health class, it’s suggested that the student talk to an adult in the home, an adult friend in the family, or a member of the faith community. We also offer resources such as social workers or counselors.”

Those social workers or counselors might not be health professionals. And some young gay and bisexual black men and women face social isolation or being ostracized if they reach out to a family member or faith leader. According to another study by Sullivan and Rosenberg and their colleague Adam Vaughan, in Atlanta, gay and bisexual black men were more likely than their white counterparts to report sensing antigay stigma where they live. Dubbed the Achilles heel of HIV prevention by Dr. Carlos Del Rio of Emory University School of Medicine, stigma contributes to gay and bisexual black men not wanting to discuss their HIV status with partners.

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Black churches have been criticized for significantly contributing to that stigma. There’s debate over whether they should carry so much of the burden. Putting a public health problem at the feet of the church takes some of the responsibility off government and also overlooks the demagoguery of predominantly white churches and brimstone belchers who fuel antigay sentiment. While the black community isn’t a monolith, large segments of it are tightly connected with the church and grew up on, follow, and believe in a socially conservative doctrine.

For Arromand, going to church was a normal part of his routine. “As a black gay man going to church every week, what I heard was, ‘You’re possessed by the demon. It’s the devil that makes you do this. God doesn’t like people like you. People like you are fags. They’re going to Hell.’”

Hearing this message over and over for years affects one’s mental health and self esteem, Arromand says.

“It convinces you that who you are is not a good person,” he says. “You’re going to be shameful about the sex that you’re having, and you’re likely to not want to share or get help around issues that you may be experiencing with your sex and sexuality or the challenges that you may not be able to work through.”

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Over the years, the talk of eternal damnation has given way, in some progressive black churches, to a so-called “reconciliation” and acceptance. Rev. Ken Samuel of Stone Mountain’s Victory Church has preached acceptance of gay men and women to his predominantly black ministry since 2004. Bishop O.C. Allen, an openly gay pastor, leads Ormewood Park’s Vision Church, which welcomes LGBT men and women. In 2007, the Rev. Dennis Meredith of Tabernacle Baptist Church, then in Old Fourth Ward, took an instant HIV test in front of his congregation to encourage testing and to reduce stigma.

In the English Avenue neighborhood, volunteers from the Atlanta Harm Reduction Coalition exchange needles with people who use heroin, an important (and technically illegal) strategy to help curb HIV infections. In Midtown, workers are renovating a Victorian duplex on behalf of the Lost-and-Found Youth organization to create a safe place where homeless LGBT teens can live and build a support network. HIV clinics such as AID Atlanta and NAESM are expanding their services, and being rewarded by supportive philanthropic groups such as the Community Foundation for Greater Atlanta. Rush often speaks about HIV to students in schools, which he thinks need gay-straight alliances to offer young teens a place to bond with their peers and talk about their sexuality in a frank manner.

But HIV prevention needs more funding. Although the state is finally allocating cash for the AIDS Drug Assistance Program, which helps get a person making $35,000 per year or less access to medication, it could do more. Currently the state allocates no money for prevention, relying entirely on federal funds for that. According to the Kaiser Family Foundation, Georgia received approximately $19 million in federal funding from the CDC in 2013.

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But what has activists chattering the most currently is a little blue tablet. In 2012, Truvada appeared on the market. Made by pharmaceutical manufacturer Gilead Sciences, the once-a-day pill is taken by HIV-negative patients as part of a regimen called pre-exposure prophylaxis, or PReP to help prevent HIV infection on the chance that they don’t wear a condom, share a needle, or engage in other risky behaviors. The treatment has been, to some public health advocates, a godsend second only to a cure. By sticking to the strict regimen of the once-a-day pill and regular doctor visits, the so-called “wonder drug” has been shown to reduce by 92 percent people’s risk of acquiring HIV.

Gilead’s medical breakthrough has been met with criticism by some in the LGBT community, including the AIDS Healthcare Foundation. Opponents wonder whether a person can adhere to taking the pill each day or risk losing its effectiveness, and they express concern that the regimen could lead to less condom use. Plus, Truvada is expensive — between $8,000 and $14,000 a year, though most insurance plans cover it and Gilead offers assistance.

Graham was skeptical at first.

“I had to really rethink my thoughts on Truvada and PrEP,” he says. “Two years ago I was one of the people who nitpicked the data. We’ve got to embrace this. It works.”

Graham and others are asking if it’s time for the CDC to consider revisiting a policy written years ago — and which Graham acknowledges that he advocated for — that restricted federal funding for prevention and treatment by putting it in silos. Doing so protected sought-after federal dollars from the Health Resources and Services Administration and ensured that money would support treatment centers for low-income HIV-positive men and women. Money for prevention came from the CDC.

Truvada has disrupted the paradigm because it encompasses both treatment and prevention. Since it’s for people who aren’t HIV positive, HRSA won’t pay for it. And the CDC has traditionally stayed away from funding HIV medication.

“We’ve got millions of dollars to distribute condoms, but there’s nothing we can do about PrEP,” Graham says. “It seems like a situation that should be relatively easy to change.”

Some public health and elected officials across the country are now viewing Truvada as a potentially powerful tool in preventing new infections. In June, New York Gov. Andrew Cuomo made access to PrEP one leg of a three-part plan to reduce by 2020 the number of people living with HIV in the state. In September, San Francisco City Supervisor Scott Wiener announced that he was taking Truvada to reduce stigma against the treatment. In November, his fellow elected official David Campos announced plans to introduce legislation that would allocate $800,000 to help residents who couldn’t afford the drug, and to help educate people about the treatment.

Sullivan says Georgia and Fulton and DeKalb counties should follow suit. Though it’s unclear how much it’d cost to make the medication available at low or no cost, he argues that providers should see the economic benefit when they factor in the number of required return visits and lab work.

Despite the severity of Georgia’s HIV epidemic, state elected officials are silent on whether they’d support such a move — or much of any policy proposals that could address the high HIV rates. Eaves says that he and his colleagues would work on the issue and that he would consider studying what a Truvada proposal could look like in Fulton.

“A case can be made for making some sort of investment or subsidy on the front end in terms of resources to help people access medication ... it saves dollars on the back-end,” he says. “My educated guess is there’s a potential cost savings, including productivity, extension of a person’s life, and quality of life.”

On Dec. 1, Sullivan was rushing to finish his presentation to a Buckhead banquet room filled with elected officials, policymakers, and philanthropic leaders so he could fly to Washington, D.C. After delivering the bad news Sullivan had good news to share: Despite the distressing infection rates, progress could be made.

“There are exciting things happening,” he said. “But the gap between what’s needed and what’s being done is great.”

Georgia could be a leader in battling the HIV epidemic that has the Southeast in its clutches. There are simple solutions that could make real differences in people’s lives.

Thousands of young men and women are HIV negative and working to stay that way. Some are HIV positive but are finding support, receiving treatment, and living their lives.

About four years ago, Xavier, a young Atlantan, felt sick. The then-18-year-old Atlanta native had a cold and was coughing. He felt drowsy and woozy. He decided to seek care from a medical professional. He took an instant HIV test, which showed a positive result. And then, he says, he saw darkness.

“At that moment the world closed in on me,” says Xavier, whose name has been changed for this story. “Everything was black. I don’t know ... at that moment I kind of demanded a sense of direction. I had already been lost as an individual. But discovering more tragic information on my life made the situation worse.”

As a teenager, Xavier left his home after telling his mother about his sexual orientation. His father had been in and out of prison, Xavier says.

In the months following his diagnosis, Xavier says he was depressed and didn’t eat. Then his caretaker, whom he calls his “guardian angel,” the woman who had looked after him in the absence of his mother and father, died.

“It reminded me that life goes on, and I must seek through to make the best experience for myself,” he says.

Today he takes medication and is focused on getting a degree in social work. Next year he’ll start at Georgia State University. He sees his doctors at Grady, whom he considers an inspiration, when needed. Xavier doesn’t go out or do much because he’s focused on his schoolwork. But he finds inner peace by reading in a coffee shop while sipping on medium roast coffee with heavy cream and sugar. Hazelnut is a plus.

He has hope.

“Sometimes I see a box six feet under,” he says. “Sometimes I see a successful black man with life, a sense of self and direction. Sometimes I see myself on TV changing someone else’s life. I have a different vision every day.”