Marvell L. Terry II remembers the August 2007 phone call “just like it was yesterday.” He was a 22-year-old University of Memphis student working part-time at a local bank. “The call” came during lunch hour at his favorite Chinese restaurant near Graceland, Elvis Presley’s mansion. “We need you to return to the doctor’s office,” the nurse told him. “Right away.”
Terry had been ill for several months—he had even fainted on campus—but didn’t know why. “I went to the doctor’s office. The nurse asked me, ‘Are you having sex?’ and of course my answer was, ‘No!’” recalls Terry, who is now 31 years old and the HIV and AIDS project manager of the Human Rights Campaign.
His answer wasn’t true. Terry had been attracted to and having sex with other young men since high school. “The judgmental tone from the nurse and doctor made me panic,” he says. “‘You need to take an HIV test,’ they warned me.” The nurse’s harsh delivery hinted at what he suspected. But Terry never returned.
Terry was born and raised in Memphis in a close-knit, religious family. He was very active in the Baptist church and became a youth pastor at age 16. But then he became estranged from his church and family after being outed by another church member. “I cried and was forced to tell my pastor that I was gay. I also feared my parents’ reaction, because I was still under their insurance and they would have discovered.”
A second call several months after he spoke with the nurse, this one from the Shelby County Health Department, confirmed that Terry was HIV positive. Terry says, “[I was] too afraid [of] being stigmatized as a Black, gay, HIV-positive man.” Instead of seeking treatment, he panicked and moved across the state to Nashville.
The epicenter of the HIV epidemic in the United States is the South, which the Census Bureau defines as the 17 states extending from Oklahoma and Texas to the District of Columbia. One third of the total U.S. population (115 million people out of 319 million) and about half of all people living with HIV in the United States live in the South.
New infections—like that of Marvell Terry—are disproportionately among African-American men who have sex with men (MSM), or, as many in the Black community often refer to themselves, same-gender-loving men. According to the Centers for Disease Control and Prevention (CDC), of all Black gay and bisexual men diagnosed with HIV nationally in 2014, more than 60 percent were living in the South.
Black people constitute only 14 percent of the nation’s population but account for 44 percent of all new HIV infections. African-American gay and bisexual men have experienced the most severe burden and represent about one in every four new infections. Black gay and bisexual men have been more affected by the epidemic than any other population in the world, according to a statement made by the Black AIDS Institute at the AIDS 2012 conference.
“There are many beautiful things about Southern culture that I love that are celebrated by Black gay and bisexual men across the South, such as love, care and community,” says Stacy W. Smallwood, PhD, assistant professor of community health at Georgia Southern University. “But there also are many structural and social issues here that [impact] those at the intersection of race and sexuality.”
Those structural and social forces are compounded by the conservative and religious culture across the South. First, there’s the stigma of living with the virus. That stigma prevents many people from getting tested, starting treatment or staying in care. The South is also the nation’s poorest region. Many Black gay and bisexual men across the South endure poverty, unemployment, housing insecurity and health disparities. And then there is the matter of access to health insurance and health care. “These drivers are exacerbated by racism,” adds Smallwood.
Rural isolation and lack of transportation are other drivers. “When people think of Black gay and bisexual men in the South, they [usually] think of metropolitan Atlanta. We don’t always take into account what it means to [live] in rural areas,” says Smallwood.
Structural issues such as poverty, transportation barriers and lack of access to health care are heightened across the rural South. The region also has the nation’s highest prevalence of cases in rural areas and a larger proportion of counties without HIV specialists, according to the Southern HIV/AIDS Strategy Initiative. The historic African-American majority counties in the Mississippi Delta and Alabama’s “Black Belt” have among the nation’s highest HIV burdens. Many rural counties are without hospitals or even basic clinics. The result: Rural counties across the South have the nation’s lowest five-year survival rates after diagnosis.
Of the 25 metropolitan areas in the United States with the highest levels of gay and bisexual men living with HIV, 21 are in the South, according to analysis by Emory University. The highest rates—where at least one in four gay or bisexual men were diagnosed with HIV—are among those metro areas with the highest concentrations of African Americans, such as Columbia, South Carolina; Augusta, Georgia; Baton Rouge, Louisiana; and Jackson, Mississippi. Jackson, the Mississippi capital, which is 80 percent African American, leads the nation with an estimated 40 percent of its gay and bisexual men living with the virus.
“About half of the people [in Jackson] who are HIV [positive] are not receiving care,” says Leandro Mena, MD, MPH, associate professor of medicine at the University of Mississippi Medical Center. This means not only that their own health is suffering but also that their virus is not suppressed.
To confound the problem, people “will engage in condomless anal sex because they trust their partner or do not want to use a condom and then avoid being tested,” says DeMarc Hickson, PhD, chief operating officer of My Brother’s Keeper, an HIV/AIDS community organization with locations across Mississippi. “Then they have sex with someone else, and this perpetuates the situation. There’s also a certain amount of HIV fatalism.”
Prevention efforts, viral suppression and linkage to care are all critical to limiting the number of new HIV infections. On the prevention front, there’s pre-exposure prophylaxis, or PrEP, a daily pill taken by an HIV-negative person to prevent the virus. (There’s also post-exposure prophylaxis, which is an emergency HIV treatment given immediately after a possible exposure.) While white gay men are embracing Truvada as PrEP in record numbers, their Black counterparts are not (click here to read “PrEP: A Dream Deferred” for more information).
Viral suppression is key because when antiretrovirals, the medications that fight HIV, have prevented the virus from copying itself and wreaking havoc throughout your immune system, they preserve your health and also make it almost impossible to transmit the virus. This is known as “treatment as prevention,” or TasP. Unfortunately, Black gay and bisexual men are the least likely to be linked to care; as a result, they have the lowest level of viral suppression among all demographics.
Marvell Terry was eventually linked to treatment after returning to Memphis—and reuniting with his family—in early 2009. That was more than a year after that first phone call. “My social worker told me that my CD4 count was two,” he remembers. “The lowest you could be is zero. ‘I am surprised that you are walking,’ she told me.”
The doctors prescribed Atripla, and it took only about six months to achieve viral suppression, Terry says. “But it was more difficult to raise my CD4 levels. That took about nine months.” Today, Terry is healthy and has an undetectable viral load.
The South has faced longstanding health disparities, which include higher rates of sexually transmitted infections (STIs), infant mortality, obesity, diabetes and cancer. HIV-related disparities are often more severe in the Deep South—Alabama, Georgia, Louisiana, Mississippi and South Carolina—which has the nation’s highest AIDS mortality rates.
Syphilis and gonorrhea infections are increasing nationwide among gay and bisexual men, with the largest increases in the South, the CDC reports. These infections can injure the delicate tissue of the anus, genitals, mouth and throat. The resulting lesions can become an entry point for HIV; at the same time, the inflammation can fuel the virus’s spread.
Meanwhile, school-based sexual and HIV education remains a critical challenge across the South. Only 13 states have mandated medically accurate sex and/or HIV education, according to the Guttmacher Institute. Educators in four states—including Alabama, South Carolina and Texas—are not permitted to discuss nonheterosexual orientation in a positive manner. (Utah is the fourth state.)
“It is very important that we address sexual and HIV education in a comprehensive nature to reach gay and bisexual male high school students at the highest risk of acquiring STIs and HIV,” says Kimberly A. Parker, PhD, associate professor of health studies at Texas Woman’s University. “In the South, this often becomes subjective from the belief systems across the Bible Belt.”
Health disparities are exacerbated by the Republican Party’s domination of state politics. Republicans control almost every Senate seat, governor’s mansion and state legislative body across the South.
Most Southern state governments have “refused to adequately fund” HIV prevention budgets, says Kenyon Farrow, the U.S. and global health policy director of the New York City–headquartered Treatment Action Group (click here to read more about Farrow). For instance, “Mississippi’s investment in HIV/AIDS programs and services remains minimal and relies almost exclusively on federal programs to provide care and services,” adds Farrow, who is based in Washington, DC, but works extensively in Mississippi.
Poor and working-class Southern whites are also impacted by the GOP’s limited government philosophy but overwhelmingly vote against their own interests. “Many white people believe that even if they are poor and facing the same socioeconomic conditions as Black people, their whiteness gives them a significant advantage,” explains Ravi K. Perry, PhD, an associate professor of political science at Virginia Commonwealth University. “So building coalitions is very hard to come by if you don’t see yourself in the same boat.”
The almost wholesale rejection by Southern states of the expansion of Medicaid income eligibility requirements under the Affordable Care Act (ACA, or Obamacare) also contributes to the challenges. “The lack of health care infrastructure in the South has particularly impacted Black gay men,” says Farrow.
Arkansas, Kentucky and Louisiana are the only Southern states to have expanded Medicaid. “More than 326,000 people have enrolled in Louisiana Medicaid Expansion since it went into effect July 1,” reported The Times-Picayune of New Orleans in late October.
“This is huge,” says New Orleans–based David Armstead, a peer navigation coordinator with the Louisiana Office of Public Health STD/HIV Program. “It opens up so many doors for insurance, treatment and everything.” Baton Rouge, Shreveport and New Orleans have some of the na-tion’s highest rates of new infections.
It’s a different story in Georgia, where the Republican governor and legislators are opposed to expanding Medicaid. Atlanta’s large Black gay and bisexual male population has earned it the moniker “Black San Francisco.” Atlanta has the nation’s fifth-highest HIV rate. New infections are increasing at about 12 percent a year among young Black gay men in the city, one of the highest figures for HIV incidence ever recorded in the developed world, according to HIV/AIDS news site aidsmap.com.
“Atlanta is resource-rich, at least on paper, when it comes to HIV services. But many of those resources do not [reach] Black gay men on the street, where it can have the most benefit. Medicaid expansion is definitely needed in Georgia,” says 30-year-old Daniel D. Driffin, the cochair of the Fulton County Task Force on HIV/AIDS.
Driffin made history last year when he addressed the 2016 Democratic National Convention. Driffin became the third Black, openly gay person living with HIV to address that convention, following Black AIDS Institute president Phill Wilson in 1996 and AIDS United president Jesse Milan in 2000.
The entire discussion around Medicaid and the ACA very likely could change after January 20 and the inauguration of President-elect Donald J. Trump. The Republican campaigned on a promise to dismantle the ACA, a signature achievement of the Obama Administration. The ACA prohibits bans on preexisting conditions such as HIV, asthma, cancer and diabetes. More than 20 million people have gained health care coverage through the expansion of Medicaid and private insurance.
“Millions of low-income Americans on Medicaid could lose their health coverage if Trump and a Republican-controlled Congress follow through on proposals to cut spending in the state-federal insurance program,” reports Kaiser Health News.
“HIV is often vectored into discussions around public health, but things such as employment, housing and public accommodations are not considered,” says Preston D. Mitchum, LLM, the policy and research analyst at the DC-based Center for Health and Gender Equity and an adjunct professor at Georgetown University. “These are not protected across the South.”
Only 20 states and the District of Columbia offer extensive LGBT protections. In the South, only Maryland and Delaware provide such statewide protections. Virginia and Louisiana offer employment protections for public employees.
Harsh, punitive and scientifically inaccurate HIV criminalization laws worsen stigma and inhibit disclosure. At least 32 states and two territories criminalize exposure to or transmission of HIV, according to the Center for HIV Law and Policy. “Almost every state in the South criminalizes HIV,” adds Mitchum. “But most refuse to expand Medicaid so people can access care. The laws criminalize people who transmit or expose HIV [to partners] even if they don’t know they are positive.”
The bottom line: “Black men who have sex with men enjoy limited civil liberties across the South,” says Mitchum.
High rates of incarceration also fuel the Southern epidemic. The United States has the highest incarceration rate in the world. It is home to 5 percent of the world’s population but more than 25 percent of the world’s prisoners. What’s more, Southern states have the nation’s highest rates of incarceration, led by Louisiana, according to the Southern Center for Human Rights. Black men are disproportionately arrested and prosecuted and receive harsher sentences.
“More money would be fantastic to help prevent more infections,” says Louisiana Office of Public Health’s David Armstead. “But if we could remove the stigma out of HIV? Stigma is one of the biggest deterrents to being tested in New Orleans and Louisiana.”
Stigma undermines prevention efforts by making people afraid to seek out services and treatment. Stigma also makes people afraid to disclose their status for fear of rejection or violence. Homophobia and the prominence of religious culture in the South don’t help. In rural communities, HIV stigma can be especially severe.
“Many people who are HIV positive will suffer in silence and go to great lengths to hide their status,” says Andrew Bates, a 24-year-old community outreach specialist at the Hattiesburg, Mississippi–based AIDS United. “We are an hour and a half away from Jackson, and they will drive there instead [for services]. Sometimes they will even drive out of state.”
Cedric Sturdevant, a 51-year-old who grew up in the Mississippi Delta, is one of those who suffered in silence. Sturdevant learned he was positive in March 2005 but was afraid to access HIV services and tell his family “because I thought they would reject me. There was also shame. I thought that I deserved HIV for being gay,” he recalls.
Sturdevant finally sought medical treatment in Memphis when he became gravely ill with a stomach fungus. After being discharged from the intensive care unit, he returned to the small town of Metcalf, Mississippi, to live with his mother, regain his strength and enter care. “The doctor was about 50 miles away. Most people who are HIV positive don’t want to visit clinics in their own community.”
Sturdevant, now a project coordinator at My Brother’s Keeper, shares his story with younger men. It was very difficult to grow up in the Delta and have feelings for other boys, he says. “I had to hide it. It took me 32 years to come out as gay. I cried myself to sleep and thought about suicide several times.”
A one-size-fits-all strategy—such as advocating for more testing—cannot alleviate the devastating epidemic among Southern African-American gay and bisexual men. Instead, the many structural, socioeconomic and health barriers must be addressed.
Recently, ViiV Healthcare—which makes such antiretroviral medications as Triumeq, Combivir and Lexiva—announced a four-year, $10 million initiative titled ACCELERATE! to help fuel a community response to HIV among Black gay and bisexual men in Baltimore and Jackson, Mississippi. “This is important because we have to recognize the social determinants and structural barriers that inhibit Black gay and bisexual men from engaging in care and becoming virally suppressed,” says TAG’s Kenyon Farrow.
Marvell Terry was inspired to create his own foundation—The Red Door Foundation—and the annual Saving Ourselves Symposium (SOS) in Memphis. SOS is believed to be the first annual conference targeting HIV among Southern African-American gay and bisexual men.
“We are in a state of emergency, and I wanted to convey this,” says Terry, noting that the event targets those “who need to be at the table to decrease transmission in the South.”
“We always have to have meaningful involvement of people living with HIV,” adds Atlanta’s Daniel Driffin. “We are often the last in line for developing programs. People living with HIV have to be at the table and can provide a level of knowledge that isn’t there.”