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January / February 2011
by Carl Gaines and Illustration by Asaf Hanuka
Extreme poverty, government funding shortfalls, natural disasters, immigration issues, language barriers and lack of transportation all fan the flames of the HIV/AIDS epidemic raging in the South. But it is stigma and discrimination—rooted in conservative attitudes and religious beliefs—that really ignite the fire. A look at what we must overcome if we don’t want HIV/AIDS rates in the Southern United States to rival those in South Africa—and why people living with the virus are a large part of the solution.
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When Juanita Davis, director of HIV prevention and education for the state of Mississippi, visits church or school groups to teach about the virus, she arrives armed with Mounds bars, 5th Avenue bars and lots of Sugar Babies.
She brings the sweets not to bribe her audiences to pay attention, but rather to help illustrate, with physical analogies, the things she is not allowed to say in the places she visits. Imagine trying to teach HIV prevention without being able to say “penis,” “condom” or “semen.”
That’s where the candy bars come in.
The fact that Davis must use candy as euphemisms for body parts, contraceptives and bodily fluids says much about the environment in which she—and others—are trying to fight the next big wave of HIV/AIDS in America.
Like her peers battling the virus in a region cinched tight by the Bible Belt, Davis has to use ingenuity. By the time anyone changes the system, or age-old beliefs, too many more will get sick, and even die. That’s why Davis is willing to try to break down barriers—one chocolate bar at a time.
“If we can give just a little information—once we talk about the statistics, for instance—people are more open [to the idea of learning how to avoid HIV],” Davis says. “If we can [talk through] that crack, they’ll open the door.”
The challenges specific to the Southern United States have made people in this area uniquely at risk for HIV and have resulted in the disproportionately high rates of HIV infection, as well as the high percent of people living with HIV who are unaware of their status and the high percent of those who know they have HIV but who are too afraid to seek care.
Although only 36 percent of the U.S. population lives in the South, about half of all people living with HIV/AIDS in the country live in the South. The region has the highest rates of new HIV cases and the largest numbers of adults and adolescents living with HIV/AIDS. The South has the most AIDS deaths, the most people with AIDS diagnoses and almost half of new AIDS diagnoses.
The HIV/AIDS epidemic is raging across the Southern United States like an out-of-control fire.
Conservative attitudes about sex and sexuality are just one hurdle HIV fighters face in the South. Extreme poverty is another. Kathie Hiers, chief executive officer of AIDS Alabama, says, “[The South has] the most people living with HIV/AIDS, the most rural areas, the most people without health insurance and the highest [overall] death rate.”
She cites poverty as a key element in the spread of HIV across the South, pointing out that as the economy tanked across the country, people in the South had less distance to fall before hitting rock bottom.
Of the 17 states considered “Southern” by the U.S. Census Bureau, 13 of them have poverty rates of 16 percent or more. In Mississippi, the poorest of the poor states, the poverty rate rises to 21 percent.
To witness what that life below the poverty line looks like, you only need to travel a short distance out of Jackson, the state capital.
Two hours northwest of Jackson you hit Greenville. As you drive to Greenville, the terrain dips down and flattens out into a seemingly endless sea of cotton fields that flow down to the Mississippi delta. Located smack inside the delta, Greenville is one of the poorest cities in the state.
Greenville, in Washington County, has a population of 54,616 and is famous for its cotton and catfish. But many people have left the area in recent years. There is a sense of real isolation in this rural county. Many people don’t have cars or access to the Internet.
For people diagnosed with HIV in Greenville, poverty not only keeps expensive medications out of their reach, it even keeps people from getting to a doctor in the first place.
“I was diagnosed in 1990 when the health department told me I had contracted HIV,” says Dorothy Davis, a longtime Greenville resident. After informing Davis of her status, the health department sent her home. “I walked home from the health department not knowing how I got there—I was in a daze.” Due to her low income and lack of transportation, she had trouble accessing care and treatment.
Over the years, Davis has tried to organize support groups for other people in the area who are HIV positive. But even though there has been interest, it has been too hard to get people together.
Another woman living with HIV in Cleveland, Mississippi—about an hour’s drive from Greenville—wanted to attend Davis’s support group, but she didn’t have access to a car and she couldn’t get there via public transportation. As far as Davis knows, the woman still hasn’t been linked to any support network.
Robin T. Webb, executive director of A Brave New Day, a Jackson–based HIV/AIDS advocacy group, says lack of transportation for some in the South is a major issue when it comes to fighting and living with the disease. “Peer networking is not valued [in Mississippi],” Webb says. “If it were valued, there would be transportation.”
Webb also points out another critical barrier: lack of understanding about available support programs designed to help low-income people access care and treatment. This is true, he says, of both people living with HIV and the medical providers who treat them.
“People don’t know what HOPWA and ADAP are,” he says, referring to the Housing Opportunities for Persons with AIDS and the AIDS Drug Assistance Program. Our country, he continues, has a habit of delivering services but not educating people that they are available.
Davis is a case in point. When asked, she didn’t know who paid for her HIV medications. She suspected that their cost was covered by her Social Security Disability Insurance. All she knew for sure is that when she went to the pharmacy, her prescriptions were there. She had never heard of ADAP.
But even if Dorothy Davis knew about ADAP, she might not be able to receive benefits from the program.
Yet another complicating factor when it comes to fighting HIV in the South is that even federal funds specifically allocated to help people with HIV may not be reaching those most in need. The distribution of special funds was set up when the epidemic was concentrated on the coasts and in the north. The disease has moved faster than the systems set up to tackle it have evolved.
For example, in 2008, Part A of the Ryan White HIV/AIDS Treatment Modernization Act provided $627 million nationwide for emergency assistance for people living with HIV. The bulk of this federal funding was directed to EMAs, or “eligible metropolitan areas.”
To qualify, according to the Department of Health and Human Services, an area must have reported more than 2,000 AIDS cases in the most recent five years and have a population of at least 50,000. Under these constricts, many of the South’s rural areas cannot secure funding.
If one were to try to understand the HIV hot spots in America based on Ryan White appropriations, one would think HIV/AIDS was primarily an urban disease. But the truth is drastically different. And until funding gets shifted to areas hardest hit by HIV, we will continue to see an imbalance between need and resources.
Another critical component to the health care needs of low-income HIV-positive people is Medicaid.
As a result of the structure for distributing Ryan White funding, the bulk of money for HIV/AIDS care in the South comes from Medicaid, the U.S. government’s health care program for low-income Americans (This is true in many other parts of the country, including those also covered by Ryan White funding). To date, four in 10 Americans with HIV have their health care covered by Medicaid.
However, Southern states in particular, in efforts to bring down costs and shorten budget deficits, are limiting their Medicaid contributions and the services that Medicaid covers. For example, the expenditure of $127 million from Congress in supplemental Medicaid dollars is being postponed by Mississippi Governor Haley Barbour until fiscal year 2012.
“I appreciate the leadership of both houses for agreeing that these additional funds should be saved and spent in fiscal year 2012 when we face a budget shortfall of more than $600 million,” says Barbour in an August 2010 statement.
Meanwhile, in December 2010, there were 828 people on AIDS Drug Assistance Program wait lists in Georgia and 477 people waiting in Louisiana. There were no wait lists in Mississippi.
Southern states already have relatively low Medicaid expenditures given their population sizes. In 2008, Alabama, with a population of 4.7 million people, paid $4.1 billion for the program, and Mississippi, with a population of 2.9 million, paid $3.8 billion. By comparison, New York, with a population of 19.2 million, paid the most of all states—$47.6 billion.
Many see the Patient Protection and Affordable Care Act, a.k.a. the nation’s new health reform bill, as a bright spot, widening the net of HIV-positive people eligible for services.
“I think that health care reform is going to help a lot,” Hiers says. “When health care reform kicks in, we figure that about 80 percent of HIV-positive people [in the South] are going to get Medicaid.”
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