BIRMINGHAM, Ala. — AIDS Alabama CEO Kathie Hiers will “never forget” the day in 1985 when she and her partner were at Denny’s in her hometown of Mobile, Ala., when six of her “best gay boyfriends walked in” and said they had all tested positive for HIV.
They had gone to nearby Pensacola, Fla., to get tested because Florida offered anonymous testing, unlike Alabama.
“I was like ‘Oh my God, what is happening,’” Hiers told the Washington Blade during a July 16 interview at her Birmingham office before traveling to the 2014 International AIDS Conference in Australia. “Today one of those six guys is still alive.”
More than three decades after the Centers for Disease Control and Prevention reported the first cases of what became known as AIDS, the epidemic continues to have a disproportionate impact on the South.
The CDC in 2010 noted nearly half of all new HIV infections in the U.S. were in the South, according to a policy report from the Southern AIDS Coalition. Eight of the 10 states with the highest rates of HIV — Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Texas and Tennessee — are in the region.
The CDC notes Florida, Louisiana, Mississippi and South Carolina are among the states with the highest rates of AIDS diagnoses.
Hiers said the statistics are slightly lower in Alabama because her organization has partnered with all of the state’s HIV/AIDS service organizations and works within all of its 67 counties.
“We’ve got a pretty cohesive network,” she said. “It’s very different than the other Southern states where you go to Atlanta and there’s a good bit, but you get outside Atlanta and there’s nothing. The same in Louisiana with New Orleans and so on.”
Hiers further noted the 1917 Clinic where a number of groundbreaking discoveries around HIV/AIDS have taken place is located at the University of Alabama-Birmingham.
“We’re always very connected to clinical trials and so on,” she said. “Those two things have helped Alabama.”
The Duke Center for Health Policy and Inequalities Research in 2011 noted Mississippi had the highest number of deaths from HIV of any state. Alabama, Florida, Georgia, Louisiana, North Carolina, South Carolina and Tennessee were among the top 10.
The U.S. Census also indicates that Mississippi is the poorest state in the country, with 22.3 percent of residents living below the poverty line between 2008-2012. Louisiana and Alabama have the second and fourth highest rates of poverty in the country respectively.
Statistics also indicate that people of color are more likely to live in poverty than whites.
“Part of what happens with people who are poor is they don’t go to the doctor,” Kathryn Garner, executive director of AIDS Service Coalition, an HIV/AIDS service organization in Hattiesburg, Miss., that serves people with the virus who live in 71 of the state’s 82 counties, told the Blade during a recent telephone interview. “If you don’t go to the doctor, you don’t know you’re HIV positive until you go to the doctor when you’re really sick and then you’re AIDS-defined.”
Charlotte “Dot” Norwood, a prevention counselor at Open Arms Healthcare Center, an HIV/AIDS clinic in Jackson, Miss., that My Brother’s Keeper, an organization based in nearby Ridgeland, Miss., that seeks to reduce health disparities among minority groups, is known affectionately as the “AIDS Lady.”
She told the Blade during a July 11 interview at the clinic that patients with the virus are often unable to get a job.
“[They] go for an interview, don’t get hired and it could be for many reasons,” she said. “Sometimes I think it’s because you know maybe they go in and the person’s first perception… masculine, things like that.”
People with HIV/AIDS fall under the Americans with Disabilities Act. It also bans all public entities and private companies that employ more than 15 people from discriminating against their employees based on their status.
No Southern state bans anti-LGBT employment discrimination. Louisiana, Tennessee and Florida include sexual orientation in their anti-hate crimes statutes, but not gender identity and expression.
Carl Green, a gay white man who has lived at Belle Reve, a residence in the Fraubourg Marigny neighborhood of New Orleans for people with HIV/AIDS since May, told the Blade during a July 14 interview that he lost his job when he told his then-manager he was living with HIV after several hospitalizations.
Green said he eventually lost his home and lived in his car until a bank repossessed it.
The New Orleans AIDS Task Force, an HIV/AIDS service organization that serves people with the virus in the Crescent City and throughout southeastern Louisiana, referred Green to Belle Reve.
“It was the universe saying you need to go back to square one and get your health together,” said Green.
People with HIV struggle to find housing, food
The Fair Housing Amendments Act of 1988 bans discrimination against people living with HIV/AIDS and other disabilities.
In spite of this federal law, a lack of housing remains an acute problem for low-income people with HIV/AIDS in the South.
Fifteen people currently live in two group homes in Belle Reve — including one called Belle Grace that Executive Director Vicki Weeks joked opened because of the “grace of God.” A third building — Belle Esprit — has four apartments for couples and families that can accommodate between seven to 10 people with children at any given time.
Belle Reve was able to renovate all three of its buildings several years ago after it received $1,189,000 in funds from Housing Opportunities for People with AIDS (HOPWA) from the New Orleans Office of Community Development, $300,000 from the U.S. Department of Housing and Urban Development, grants from the National AIDS Fund and other groups and money from the Qatari government.
“I’m happy until I can get on my own and start over again,” a Belle Reve resident of color who describes himself as “very-much gay,” but asked to remain anonymous told the Blade. He worked at Tulane Hospital in New Orleans for four years before he tested positive in May 2013. “I’m looking for another job, but I’ve been having a little problem with that because I guess I’m gay. They look at you and they judge you.”
Miss Eddie, a 58-year-old transgender woman who has lived with HIV since the 1980s, moved from the New Orleans suburb of Kenner to Belle Reve in late May after her former lover died.
“It’s a great blessing being here,” she told the Blade.
Thirty-two people with HIV/AIDS currently live at Grace House, a residence in Jackson, Miss.
AIDS Services Coalition runs two residences in Hattiesburg for people living with the virus.
Eight men live in 121 Haven House, a Victorian home built in the 1880s that serves as a transitional shelter. More than a dozen women with HIV and a family live in a second facility — 227 Place — with nine two-bedroom apartments.
AIDS Service Coalition last month bought a 16-unit apartment complex with four fourplexes.
Garner said they should be renovated by the end of the year.
“Our goal of course if someone’s able to work or able to function out in the world,” she told the Blade. “We do everything we can to get them away so they can be out in the world and do the things everything they want to do.”
The South Mississippi AIDS Task Force in Biloxi, Miss., operates a transitional housing facility for people with HIV/AIDS on the state’s Gulf Coast.
“Everyone we have in any of our shelters either have no income or have disability or a low-paying job,” said Garner. “It’s really difficult if you’re making $790 a month when a one-bedroom apartment in Hattiesburg is $550 to $600 a month. The math on that just doesn’t work and there’s not enough public housing and there’s not enough housing choice vouchers.”
AIDS Alabama has one of the largest housing programs of any HIV/AIDS service provider in the South with roughly 150 units throughout the state. The majority of these are in Birmingham, the state’s largest city.
AIDS Alabama also offers rental assistance to people living with HIV across the state through HOPWA.
“Even so we always have waiting lists,” Hiers told the Blade. “Housing is just a huge need for people with HIV.”
HIV/AIDS service providers with whom the Blade spoke in Mississippi and Alabama said access to transportation and even food can adversely affect the health of people living with the virus — especially those who live in rural areas.
Dr. Laura Beauchamps, an infectious disease practitioner at Open Arms, told the Blade as she prepared to administer pre-exposure prophylaxis (PrEP) that many people with HIV/AIDS who live in rural areas are simply unable to travel to Jackson “to get checked on a regular basis.”
“They just don’t take care of themselves and they keep on spreading [the virus,]” she said as Norwood listened. “It is just very sad to see. In other states it’s not the same because they have a better transportation situation or ways to get them to the clinics and continue [with their treatment.]”
Garner told the Blade one of her organization’s clients who lives in a shelter in Columbus, Miss., travels to the state capital, which is nearly two hours away, to receive health care and HIV treatments. AIDS Service Coalition also provides her with support network, even though its offices are a 4-hour drive away from where she currently lives.
“She calls once a month and we visit,” said Garner. “We do what we can do.”
Hiers said the majority of AIDS Alabama’s clients in the Birmingham metropolitan area do not own cars. The agency has three vans that “run full time” to bring clients to their appointments and other commitments, but Hiers said “it’s not enough.”
Hiers described the city’s public transportation system as “pitiful,” noting an AIDS Alabama client who takes a 5:30 a.m. bus from his home to get to his job at 9:30 a.m. was almost fired because he was late.
Up to 170 families each month receive food assistance from Open Arms.
Norwood noted the food pantry in the back of the clinic that her son helps stock with donations was “a little bare” because the next delivery had yet to arrive from a local food bank. She told the Blade she personally delivers food to her clients who are hungry and are unable to travel to the clinic.
“I’ll step out of pocket and go get them myself, or take food,” said Norwood. “Sometimes I have my people who haven’t ate in a few days and they’ll call one of my guys. And my guys will call me and say ‘hey Dot, honey can you help me Dot?’ Oh yeah, that’s not even to be asked.”
Lack of education, stigma spread virus
Anti-HIV stigma also remains a serious problem for those living with the virus in the South.
Timothy Thompson, a peer educator with the New Orleans AIDS Task Force, told the Blade over dinner in the French Quarter on July 13 that many people who are disproportionately at risk for HIV in the city do not get tested because of the stigma attached to the virus.
“One of the biggest things is that there is the idea if I go and I test positive I’ll be alienized from my people, from my family or the people that I hang out with or things that I’m able to do I won’t be able to do anymore,” he said. “There is a level of truth to that because of the ongoing problems that are faced because of the ignorance that is around the disease itself.”
Thompson said people with HIV/AIDS with whom he has worked in New Orleans have told him that people did not want to have someone who is positive eat in their home because they think the virus spreads through saliva.
“They’re not aware of the different things that really transmit the disease as well as the different things that you can do to make sure that the people you are around that are affected about it still feel like they are normal human beings,” said Thompson. “You’re aware that this does not transmit this way and most people aren’t aware and they tend to offend people by their lack of education.”
The Blade heard similar stories from service providers and LGBT rights activists in Mississippi.
“We have folks — and this is 2014 — who are being asked in their family homes to eat off of paper plates,” said Garner.
Antwan Matthews, a gay man of color from Meridian, Miss., living with HIV, officially learned his status on April 24, 2013, the day before his 20th birthday.
He told the Blade during a July 11 interview at Open Arms where he will begin to receive care next month that his mother told him that his father, who is a Pentecostal minister, took out a life insurance policy on him after he found out he was positive.
“He’s almost gambling with my life,” said Matthews. “He’s just waiting for me to die or something.”
Matthews said his mother was initially supportive of him, but he said she pointed out his HIV status after they argued about his sister wanting to move out of the house once she had turned 18.
“She texts me and said ‘you wouldn’t listen, so look at you, you’re living with HIV now so you don’t have anything to say to me,’” said Matthews. “I was like OK. It kind of bothered me because you just don’t expect that to be said from your mom or your parents and stuff like that.”
The Belle Reve resident who asked to remain anonymous told the Blade he initially did not want to “introduce” his family in Lafayette, La., to “my HIV” because he thought they were not “going to accept it.”
“They did,” he said. “So I came here just to get myself together, for myself. So I came here and now they accept everything.”
Katrina disrupted HIV care, damaged facilities
Weeks said eight of 12 people who were living at Belle Reve when Hurricane Katrina approached New Orleans in 2005 could not evacuate on their own because they — or their relatives — did not have access to transportation.
She and three other Belle Reve staffers used private vehicles to evacuate their residents to a campground in Alexandria, La., a city roughly 200 miles northwest of New Orleans.
The trip that normally takes less than four hours took 16 hours because of massive traffic jams.
Weeks, her residents and staff spent nearly three weeks at the campground before an HIV/AIDS service organization in Anniston, Ala., offered them housing and a place to work.
They remained in Alabama for seven months before returning to New Orleans.
“The city did not have an evacuation plan for people with no vehicles, and that’s why so many people stayed,” said Weeks, who lives in the Gentilly Terrace neighborhood of New Orleans that Katrina inundated with six feet of water. “That’s why they had so many people here because there was no transportation out of this city other than your own vehicle or a vehicle of a relative. We tried to get our residents to go with relatives or with churches, but we still have eight out of 12 that had no way to get out of town.”
Katrina damaged the roof of AIDS Service Coalition’s shelter.
Garner told the Blade a man living with HIV from New Orleans approached her after she arrived to survey the damage and said he only had two days worth of his antiretrovirals.
“That story replicated itself,” she said. “Basically what we did for several months was triage.”
Garner added an additional problem that people living with HIV/AIDS from other states who fled to Mississippi after Katrina is the state’s Medicaid program offered less generous benefits than they had been accustomed.
“If they were getting psychotropic medicines or if they were getting pain medicines or fill in the blank, they came to Mississippi and that wasn’t covered,” she said.
Service providers criticize governors for not expanding Medicaid
A Gallup survey noted Texas had the highest rate of uninsured residents, with 27 percent of people without health insurance. Arkansas, Mississippi, Florida and Louisiana, Georgia and North Carolina were among the other states with the highest rates of uninsured residents.
Texas Gov. Rick Perry, Mississippi Gov. Phil Bryant, Florida Gov. Rick Scott, Louisiana Gov. Bobby Jindal, Georgia Gov. Nathan Deal and North Carolina Gov. Pat McCrory have all refused to expand their state’s Medicaid programs under the Affordable Care Act.
Hiers told the Blade the majority of the 13,000 Alabamians living with HIV are “extremely poor,” yet the state’s Medicaid program requires potential recipients to be disabled and have a monthly income of 13 percent of poverty level. She said this figure works out to around $111 a month.
Hiers added 76 percent of those who are on the Alabama AIDS Drug Assistance Program would become eligible for Medicaid if Gov. Robert Bentley and the Republican-controlled Legislature expanded it.
“I get so frustrated at our Southern states who need the health care the most not expanding Medicaid here,” said Hiers. “It’s just colossally stupid. We’re turning down billions and billions in health care for Alabamians and Southerners just because of the ideological differences between the parties. And I think that’s just wrong.”
Advocates and HIV/AIDS service providers with whom the Blade spoke in Mississippi, Louisiana and Alabama all said the vast majority of their funding comes from the federal government and private grants.
Eighty-five percent of AIDS Alabama’s annual budget of $7.9 million comes from federal sources, with HUD providing the majority of this money. The organization also receives financial support from the Ford Foundation, the Elton John Foundation, the Tide Foundation and other foundations.
HOPWA funds comprise 80 percent of Belle Reve’s $1 million annual budget.
“If we lose that there’s nothing else that we can do to keep the doors open,” Weeks told the Blade. “We have got to prepare for that.”
The Mississippi Department of Health runs a free STD clinic in Jackson where Beauchamps also works.
She told the Blade that she and her colleagues are able to find “a lot of people” there who are positive.
Beauchamps nevertheless stressed the state does not extend enough resources to her and other HIV/AIDS service providers to fight the epidemic.
“We need more grants,” said Beauchamps. “We need more support to do more testing and then to reach out in communities that don’t have a way to come all the way down to the metro area.”
Weeks criticized Louisiana lawmakers and Jindal for cutting state education and health care funding.
She noted the closest mental health clinic to Belle Reve is in Hammond, a city about an hour northwest of New Orleans, because Jindal closed the facility that had been in the Crescent City.
“All I can say is that we’re not happy with some of the issues or some of the things that our governor, Bobby Jindal, has done,” said Weeks. “We all get upset when he cuts funding for education or health care, but the state’s budget is in state law that they can’t touch any of this other stuff. That only leaves education and health care. So whoever set our government up did a very poor job.”
’I’m doing a 100 percent better’
In spite of the steep challenges, people living with HIV/AIDS and those who support them remain optimistic.
Matthews has begun speaking with teenage boys about the virus. He is also fighting to include HIV/AIDS in school curricula.
“They need to be taught,” he told the Blade. “It’s just like anything else: English, history, math, anything else that they learn. They should learn about this.”
Green has once again began taking antiretrovirals after a three year lapse.
He also had surgery last month to remove a cancerous tumor from his rectum.
“I’m doing a 100 percent better,” said Green. “It’s like I’m getting back in touch with me and getting my priorities back together. I just don’t think I would have still been on this earth. I really don’t.”