When POZ last toured the American South, in 2005, the region accounted for 41 percent of all HIV infections in the U.S. Dozens of prevention workers, educators and people living with AIDS in the 16-state region (which includes Washingon DC) told us then that they felt that federal health officials had given up on the area—even though it had emerged as the epicenter of the epidemic in the U.S. “We’ve got to figure out how to level the playing field [in the South], or we’re always going to be struggling,” Kathie Hiers, the head of AIDS Alabama, said at the time. “The status quo is going to kill Southerners.”
Two years later, Hiers’s words ring all the more true. According to the Centers for Disease Control (CDC), the South now accounts for 45 percent of all new U.S. HIV infections—and 50 percent of all American AIDS deaths. The causes for the region’s spike in new infections are as varied and contentious as they were in 2005: extreme poverty, wobbly AIDS-service infrastructure, comparatively low federal funding (northern and western metropolitan areas are still granted the vast majority of federal AIDS dollars), a high minority concentration (which has traditionally eluded HIV-prevention efforts) and a large rural population (which has difficulty accessing basic care and services).
Yet the mere act of labeling Southern AIDS a “regional problem” perpetuates the cultural stigma and interstate funding fights activists hope to prevent. The South, with its many economic and social constituencies, cannot be pigeonholed as one drawling, down-home backwater. Though the region, with its rich history and traditions, can seem more American than America itself, it has often been portrayed as a world apart, a secessionist image it has even strived to cultivate. And so the South can seem familiar and foreign—especially with an AIDS rate that rivals that of some African countries’.
How appropriate, then, that many Southern activists look at the exploding crisis and say, “How can this be America?” Activists like Hiers are still hard on the case, helping the nation understand why the Southern HIV rate continues to rise—and to keep it from emulating that of South Africa.
John Paul Womble, director of development of the Alliance of AIDS Services Carolina—who has himself been HIV positive for 15 years—says, “I beg of you, please, please, please don’t toss everyone down here together in one lump. Georgia is different from Florida; Atlanta is different from Miami. And please don’t describe our struggle down here as wanting to take federal money away from people who need it anywhere in this country. I am a child of the South, born in Kentucky, but when I fight for my people here, I also fight for people everywhere. Every sick person in this country deserves basic care. I am fighting for a bigger pie for everyone, not for someone else’s piece.”
In POZ’s July 2005 “Southern Discomfort,” by Kai Wright, activists said that they hoped something, anything, could clearly illustrate the South’s plight to federal officials, some sort of defining event or image to better plead their case. And then, just two months after we published our story, a nightmare illustration arrived: Hurricane Katrina. The slow, skittish federal response to that disaster echoed the slow, skittish federal response to AIDS in the South. As New Orleans began to drown, it was cordoned off and given up for lost, its citizens sequestered in a faceless mass. “And that’s how we feel down here fighting AIDS,” says Womble, whose father died of AIDS. “It’s like we’ve been roped away from the rest of the country and been abandoned. As if the government looks at us and says, ‘Tough noogies.’”
Today, Hiers says, the South’s post-Katrina frustration perfectly captures the divide between U.S. urban and rural areas, even within the South itself. “We found an HIV-positive man in New Orleans who was trapped on his roof for two days as the waters rose,” she says. “We got him out, relocated him to Alabama, got him an apartment, clothes, meds, new furniture. And yet he was still extremely upset because he was used to getting free hot delivered meals in New Orleans before the storm. And in Alabama, we have never had the money or programs to deliver that. And what am I supposed to say to him? That he has no right to be upset? That he should be grateful for what we did get him? That if he isn’t happy here, maybe he should make his way to San Francisco or Chicago, big cities with lots of fed money?”
Evelyn Scott is another frustrated person feeling the pinch of trying to survive with HIV in the South. She’s tired of waiting for help. Born in Ridgeland, South Carolina, she now lives 30 minutes away in Beaufort, after spending time in New York City and Delaware. Positive for 18 years, she lives alone and survives on her monthly Social Security check. She’d worked for a while as a hotel night auditor in the state’s Hilton Head island resort. When she can, Scott, 47, volunteers with ACCESS Network, a local HIV and AIDS advocacy group. She’s a client but also a sometime peer advocate.
“The big cities, they have all the AIDS services,” she complains. “They have support groups, transportation, activities. [But] down here, it’s still the same attitude as when the disease first came out. People don’t get the services they deserve, and a lot of people down here are scared that if they say anything [about having HIV], they’ll lose their job, or if they access help or care people won’t talk to them anymore. Beaufort is a little built up, but it’s still backwoods.”
Scott is not alone in her call for help. Scores of people with HIV, community-based organizations, foundations, public health officials and, slowly, faith-based groups are raising a louder call for greater awareness and support in the South. Even before AIDS arrived, in 1981, the region had long been home to the 10 American cities with the highest rates of sexually transmitted infections. But now, not only are seven of the 10 states with the highest AIDS rates in the South, but more survivors of the disease live in Southern states than anywhere else in the country. To tackle the disease in such diverse states as Mississippi, North Carolina or Louisiana means understanding the complex array of factors contributing to its spread and responding with cultural sensitivity and accuracy.
“The spread of AIDS has transformed since the beginning of the epidemic,” explains Professor Charles van der Horst, MD, of the University of North Carolina, Chapel Hill. Having researched the transmission and impact of the disease since 1981, Van der Horst was part of the medical team that identified a cluster of infections among predominantly African-American colleges and universities in the late ’90s. “The fact that 50 percent of new AIDS cases are in the Southeast shouldn’t be a surprise to anyone, because that’s where the majority of STDs are found, as well as poverty.” Indeed, the average annual income of an HIV-positive person in Alabama is $7,900. “Crushing poverty and malnutrition make it hard to attack the epidemic in South Africa,” Van der Horst continues, “but those are also factors in our areas, too. We’re dealing with poor people who don’t perceive themselves at risk, people who are addicted to drugs that make them take chances, and a lack of comprehensive sex education.”
North Carolina has concentrated medical resources and personnel in larger cities, despite the fact that close to 40 percent of its population live in rural areas. That scenario is mirrored in South Carolina, Kentucky, West Virginia, Mississippi and many other Southern states.
Womble says that in 2007, many of the long-cited causes of the Southern HIV-infection disparity are often used merely as excuses to justify a federal monetary response that has not been tailored to the evolving epidemic. “This business that the South is just reeking with stigma and ignorance is insulting,” he explains. “Look, I am a gay man, and when I was working in AIDS services on the South Side of Chicago, I myself was incredibly stigmatized because I am white and gay. There is stigma everywhere, not just the South. The truth is, with the Ryan White CARE Act money, the federal response correctly began with the areas that needed it most—large urban areas. But when the infrastructure that was built [no longer served the need of the people in the same way], the government didn’t want to change it, because they created it, and it worked. It’s easier to maintain the status quo than to change.” Womble says that just the other day, an HIV-positive woman from Connecticut called him and asked for advice on relocating to North Carolina so she could live closer to her son, who attends college there. “I said, ‘You really want my advice? Don’t come. You’ll get better services in Connecticut.’”
The regional crisis of HIV and AIDS in the South did not happen suddenly. Increases in infection rates and morbidity were recognized as early as the mid-’80s, and the large metropolitan areas where the disease originated drew media, federal attention and money. A turning point may have been a three-day event held in Charlotte, North Carolina, in November 2002.
Titled “A Southern States Summit on HIV/AIDS and STDs: A Call to Action,” the gathering was organized by the Kaiser Family Foundation, the Southern State AIDS/STD Directors Work Group and the National Alliance of State and Territorial AIDS Directors (NASTAD). It drew state public health
officials, legislators, directors of AIDS service organizations (ASOs) and advocacy groups. The occasion not only provided badly needed camaraderie and recognition for individuals battling deeply entrenched conservatism and denial, but also produced the “Southern States Manifesto.” In addition to outlining steps for moving forward in all response and advocacy areas, the manifesto noted the particular regional issues that public health authorities faced in the South.
“We’re somewhat behind the rest of the nation in coming to grips with the social aspects of HIV and AIDS, but the facts are well-known,” observes Craig W. Thompson, director of the STD/HIV Bureau in the Mississippi State Department of Health, a position he’s held for 18 years. “There have been gradual, productive efforts to increase the awareness of HIV/AIDS in the community, but it is somewhat difficult because of the religious climate. But the reality is less about North and South, and more accurately, urban versus rural. Access to care can be a problem for the underinsured and uninsured anyway, so when you add all the other baggage that comes with HIV disease, it becomes a task. We’re doing well in Mississippi just to get people into care and on medication.”
Last July, Thompson’s division pledged $200,000 annually for the next four years to support a pilot project funded by Housing Opportunities for Persons With AIDS [HOPWA]. It will create long-term, low-threshold supportive housing for HIV-positive Mississippians. The state has never before spent money on long-term housing for people with HIV/AIDS.
The Southern AIDS Coalition, meanwhile, to which Hiers and Womble belong, includes public and non-governmental health officials from 14 states in the South, plus Washington, DC. “We are making progress by finally uniting,” Hiers says. “But even from our own board [we see that], different states can have different agendas. The key is to resolve those so we can better demand what we need as a group.”
Debra Roth, director of communications and marketing strategy for the National AIDS Fund, says, “Leading private philanthropic organizations like the National AIDS Fund, in partnership with the Ford Foundation and the Elton John AIDS Foundation, have made the South a priority for their HIV/AIDS funding, with aspecific focus on building community capacity and leadership.” The national fund has been supported by the Ford Foundation to provide $1.8 million in “Southern REACH” grants to nine states in the South. Additionally, the group’s Gulf Coast HIV/AIDS Relief Fund will disburse $750,000 to alleviate the lingering impact of Hurricane Katrina on the organizations working to support those with HIV/AIDS in Southern states. “We are optimistic that by involving a broad cross section of sectors, including not just AIDS-specific organizations but other health and social service organizations, community groups, faith-based organizations, local philanthropy, business leaders and others, we can create the kind of comprehensive leadership and responses that are needed,” Roth says.
According to the Kaiser Foundation and CDC, more than 21,000 people with HIV and AIDS were directly affected by Hurricane Katrina in the hardest-hit states, Louisiana, Mississippi and Alabama. A larger metropolitan area with a high number of AIDS cases, New Orleans continues to struggle. Half the community-based prevention contractors went out of business, and a significant percentage of patients never returned after the storm, or returned months later to find their medical coverage was lost or in disarray.
“Right after the hurricane, [we] reached out to everyone in our network to try and raise whatever money we could to help affected organizations,” points out Michael Rhein, director of programs and resource development for the National AIDS Fund. “In trying to help those displaced by Katrina, the Ford Foundation wanted to invest in the South and Gulf coast area, so they gave us $500,000 last fall. By December we’d made that amount of money in grants.”
Michael Hickerson leads one of the agencies working on HIV/AIDS in New Orleans. Based in the Treme neighborhood, one of the oldest African-American enclaves in America, In This Together is an AIDS service organization and the first Title I group to work in the city. Hickerson and his partner, David Munroe, started In This Together after years of volunteer and professional work in the field. The problem was that they started it two months before Katrina hit the Gulf Coast on August 29, 2005. Evacuating to Baton Rouge and returning sporadically to their flooded house and neighborhood, they reopened the organization’s doors within a month after the storm.
The city of New Orleans ranks seventh for HIV/AIDS cases in the United States, and Hickerson’s neighborhood ranks first in case rates among all of the city’s neighborhoods.
“Personally, I continue to be pessimistic about the response to HIV and AIDS across the Southern states,” Hickerson notes. “Very little advocacy has been done among and within the community. Elected and religious leaders continue to dance around the issue. So as a result, more people are continuing to be infected. Look at New Orleans and the difficulty in getting resources onto the street. Is that any reason for optimism? ”
Jessica Mardis, 31, could use a few of the Ford Foundation’s $500,000. HIV positive for nearly half of her life, she’s an 11th-grade dropout—and now a single mother of Gabriel, 4. Her hometown, Gulfport, Mississippi, near the coast of the Gulf of Mexico, was ravaged by Katrina. While still struggling to rebuild her life, she works as a staffer for AIDS Action Mississippi, a division of Housing Works.
Two years ago, Mardis’s fiancé, John, died of AIDS. Three years ago, her mother committed suicide. Until John’s death, she says, she hadn’t taken care of herself—using drugs and alcohol and unsuccessfully trying to live in denial about her physical condition.
“Until [my husband] passed, I was never comfortable with my status,” observes Mardis one late-summer evening after putting Gabriel to bed. “Before he died, I had a few friends that knew I was positive but not many people.
Afterwards, the word spread like wildfire. I was surprised at the helpful reaction. I look around down here, and people are being infected every day. Now we’re trying to put our faces out there to show people that not only is this disease real, but you need to stand up for yourself.”
Mardis says that includes standing up for funding and care. According to recent statistics, every AIDS case receives nearly $500 less in federal aid in the South than the rest of the country and $200 less in federal appropriation for HIV prevention per estimated AIDS case.
“Our funding tends to be historically based, and historically more money tends to go to the Northeast and the West,” notes Dr. Robert Janssen, MD, director of HIV/AIDS Prevention at the Centers for Disease Control. “Those are the areas where the epidemic started. [In 2007] we got $35 million in new money going to health departments. We haven’t looked yet at the distribution because final decisions haven’t been made, but based on state eligibility, a lot of that money is going to the South. As we look at the work we’re doing, we anticipate making our funding distribution across the states more equitable. The shift toward equitability is more recent than the shift of the disease.”
While there is certainly reason for pessimism and disappointment with state and federal responses to HIV/AIDS in the South, there have been notable successes and lessons learned, which could be applied throughout the country. Andrew Spieldenner, director of programs at the National Association of People With AIDS (NAPWA), notes that “many of the Southern states have taken creative steps in meeting the needs of people living with HIV in their jurisdictions, including those with health departments, elected officials, faith-based groups and other businesses servicing the same populations. Some of this has been necessary in order to maximize resources; some of it has come out of extensive relations already existing in the respective communities.”
Given the extraordinarily high percentage of churches, particularly black churches, in the South, it may be reasonable to expect more leadership and advocacy from the faith-based community. Still, the church as an institution is doing much to ramp up its response. At the forefront of the effort to recruit more faith-based support is The Balm In Gilead, a non-governmental organization led for the past 18 years by Pernessa Seele, a native South Carolinian who relocated the group from its New York headquarters to Richmond, Virginia, last year. As POZ went to press, The Balm In Gilead was planning to sponsor the National HIV/AIDS Conference for Black Churches in Hilton Head, South Carolina, in October 2007.
“There is a dire lack of information around the disease in the South, which so resembles Africa,” Seele observes. “Information does not come through the South. Most urban centers are the centers of information. Atlanta is the South, but it’s Atlanta. If you happen to live way across Georgia you might not get the right information. Now, we have churches who are on board, but far too many have their heads in the sand. We’re seeing a change in churches’ response to AIDS in urban centers but not rural areas. That’s why we moved The Balm to Richmond.”
Seele argues, “I can’t get people interested in doing something exciting around the disease—outreach, advocacy, testing, etc.—[in cities like] Richmond. Let’s not do Miami but rather organize in Plant City, Florida. We punish the people who don’t have all the information in the South, in rural areas, because they don’t know about the disease. Economics drives the conversations. We find people down here in rural areas who believe AIDS is from mosquitoes. You don’t have to go to Africa to find that thinking. Though we moved our organization down South, we’re still using the same methods for reaching churches and parishioners.”
One organization critical to fighting HIV has long been headquartered in the South: the CDC. Based in Atlanta, it may appear to have the advantage of proximity in trying to combat the area’s AIDS crisis. And Kevin Fenton, who directs its National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention, has said that he intends to make the contributing social causes of HIV—poverty, lack of education, poor testing efforts, late diagnoses—a priority. But Hiers says that the “CDC and Ryan
White folks in Washington need to work together, to get their act together. Yes, the CDC is right there in Atlanta, but it’s really in an ivory tower, removed from the reality [of the South].” She adds that the Feds tend to point to all the wrong markers when explaining their response. “I get a bit frustrated when I hear that we should be encouraged because state ADAP [AIDS Drug Assistance Program] waiting lists are low. That’s misleading. Just because people aren’t on a waiting list for meds doesn’t mean they aren’t positive and don’t need meds desperately. They just haven’t applied for them, or they don’t know their status, or they have no way to access care because they don’t have a car or child care and they live far from a clinic so they think, ‘What’s the use?’”
Adds Womble: “With the medicalization of the Ryan White monies, focusing only on services and care that can be shown to reduce viral load and increase T cells, we lose out too—the supplementary services like transportation vanish. If you live in a city like Chicago, you can hop on the el to see your doctor. But if you live in rural North Carolina, and don’t own a car, like my people, you’re screwed.”
Hiers and Womble say that before progress can be made in their homelands, it is essential that the South not be punished or blamed for its own tragedy. “It’s not that we’re doing something wrong down here,” Womble says. “It’s not because we’re odd or socially retarded. We are who we are.” And until the Southern AIDS crisis is seen as an irreducible arm of the American AIDS crisis, he says, “it’s gonna be tough noogies for everyone.”
Correction: The National AIDS Fund has been supported by the Ford Foundation and the Elton John AIDS Foundation-- with grants of $1.55 million from the Ford Foundation and $250,000 from the Elton John AIDS Foundation--to provide a total of $1.8 million in "Southern REACH" grants to nine states in the South.