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 infection, as well as the high percent of people living with HIV who are unaware of their status or who know they have it 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 region. The South has the highest rates of new HIV cases, almost half of new AIDS diagnoses, the largest numbers of adults and adolescents living with HIV/AIDS, the most people with AIDS diagnoses, and the most AIDS deaths.
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 region had less distance to fall before hitting rock bottom.
Of the 17 states considered “Southern”[including Washington, D.C.] by the U.S. Census Bureau, 13 have poverty rates of 16 percent or more. In Mississippi, the poorest of the poor states, the poverty rate is 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.
Located in Washington County, the town has a population of 35,355 and is famous for its cotton and catfish, but many people have left the area in recent years. As a result, there is a sense of real isolation in this predominantly rural area. Several people don’t have cars or access to the Internet.
Poverty not only keeps expensive medications out of the reach of people diagnosed with HIV in Greenville, 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,” she says. Due to her low income and lack of transportation, she had trouble getting 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’ 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 is a major issue when it comes to fighting and living with the disease in the South. “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 support programs designed to help low-income people get 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 Housing Opportunities for Persons with AIDS and the AIDS Drug Assistance Program. Our country, he continues, has a habit of offering services but not educating people that they are available.
Davis is a case in point. When she was 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 was that when she went to the pharmacy, her prescriptions were there. She had never heard of ADAP.
Even if Dorothy Davis knew about ADAP, she might not be able to receive benefits from the program.
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 constraints, many of the South’s rural areas cannot secure funding.
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, Medicare covers the health care of four in ten Americans with HIV/AIDS. In an effort to bring down costs and shorten budget deficits, however, Southern states in particular are limiting their Medicaid contributions and the services that the program covers. For example, in 2010 the U.S. Congress allocated $127 million in supplemental Medicaid to Mississippi, but the state’s governor, Haley Barbour, won’t distribute the money 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,” Barbour said in an August 2010 statement.
Meanwhile, in December 2010, there were 837 people on AIDS Drug Assistance Program wait lists in Georgia and 511 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 more than any other state–$47.6 billion.
Many see the Patient Protection and Affordable Care Act, a.k.a. the nation’s new health reform law, 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.”
Personal poverty, tight-fisted and impoverished state governments, and conservative attitudes toward sex have created a perfect storm of inadequate HIV care for many Southerners, but Mother Nature herself has also played a big role. Hurricanes Katrina and Rita slammed into Louisiana and Mississippi in 2005, and the fallout continues to undermine both prevention and treatment efforts.
The storms destroyed infrastructure, much of which has yet to be rebuilt, and this continues to make getting around difficult. Many people who were dislocated from their homes are still not settled into new ones. Medical records for countless people were washed away.
The BP oil spill in 2010 further wrecked the Gulf Coast economy, making addressing the needs of those in the area even more challenging.
Sergio Farfan, cochair of the Louisiana Latino Health Coalition for HIV/AIDS Awareness, who lives in Baton Rouge, was one of the first to return to New Orleans after Katrina. As the chaos surrounding the hurricane subsided, he says, Latinos streamed in to help clean up the devastation.
According to a 2006 study by Tulane University in New Orleans and the University of California at Berkeley, almost half of all reconstruction workers who came to New Orleans after Katrina were Latino–a quarter of them undocumented. “The health needs for the Latino community, [including the people with HIV], increased tremendously [after the hurricane],” Farfan says. The Mexican Consulate in New Orleans closed in 2002, but it reopened after Katrina to deal with the increased need.
Farfan says that it’s hard to reach the Latino population due to the stigma surrounding HIV. Too few outreach and prevention programs have workers who can speak Spanish. And the clients come from different countries, so there are small cultural differences that need to be accounted for, but often aren’t.
He also cites current immigration laws: When undocumented people go into hiding to avoid detection, they also become ineligible for free services from the state.
But for all these factors–poverty, lack of funds and services, squeamishness about sex, language and immigration barriers, walls of water and oil washing over parts of the region–the largest obstacles in the South to fighting HIV/AIDS remain stigma and discrimination.
Kathie Hiers of AIDS Alabama tells the story of a board president at an AIDS service organization she ran in Mobile years ago. When he found out he was HIV-positive, the man drove several hours to Birmingham for medical care in order to avoid being seen in his neighborhood seeking treatment. His care lapsed, and he died.
“There is religiously driven stigma,” says Webb of A Brave New Day. “[As a result,] across the board people aren’t getting tested [for HIV].” They’re also not getting educated about the virus.
The lack of participation by many religious groups, especially black churches, in the fight against AIDS is a source of frustration for Ruby Gray, a social worker for the past two years in Canton, Mississippi, who has worked in HIV prevention services for more than 20 years.
Despite the fact that through 2008, 70 percent of AIDS diagnoses in Mississippi occurred in the black community, Gray says, black churches often don’t want to even acknowledge that the HIV/AIDS epidemic exists. “It’s like everyone’s turning their heads and it’s not happening–but it is happening,” she says.
Black churches often are unwilling to get involved in HIV/AIDS education, prevention, and treatment because of the connection between the disease and people’s sexual orientation. “The [stigma] is tied to the idea of MSMs,” says Gray, referring to men who have sex with men.
In the United States, HIV is associated with gay people, sex workers, and drug users. Webb says churches are eager to do HIV/AIDS outreach in Africa, but they are unwilling to broach the topic at home.
Gray spent five years trying to convince her pastor to incorporate some mention of HIV into his sermons and to have someone come in to speak. He finally said yes, and since then she hasn’t had any further problems getting HIV/AIDS materials into her church.
Greenville resident Dorothy Davis also knows how difficult it can be to get black churches to talk about HIV/AIDS. She does peer-to-peer outreach, speaking at churches and schools about HIV when they’ll let her in the door, which isn’t often.
“Churches don’t want to participate,” she says. Davis recalls once being invited by a congregant to speak at a nondenominational church, only to show up and have the pastor, who had approved the presentation, tell her there wasn’t time in the service for her talk.
That Davis, a vocal advocate for prevention, has her own prejudices about homosexuality is testament to how deeply rooted the stigma surrounding AIDS is. She says she contracted HIV from a boyfriend who, unknown to her, also had sex with men.
“If a person wants to be gay, then be gay,” Davis says. “You get caught up in it, and it’s a hard habit to break–like cigarettes or drug addiction.” To underscore her point, Davis recounts the years she has spent trying, to no avail, to quit her own smoking habit.
She says that women like her “didn’t have a choice, because we didn’t know,” which is why she’s made it her mission to educate Southern women, and men, about risk factors. Though her views on gay sex are controversial (and may ultimately harm many gay men), the fact is that she’s trying, in her own way, to move beyond issues of sexual orientation to help save lives.
It’s a step more people need to take.
Davis proves that we don’t have to support or agree with people in regard to sexual orientation, immigration status, or religious and political beliefs to fight for the right to stay healthy. Progress requires heightened awareness, better health education, and access to care and services. And people from all political backgrounds must bring that message to the public. In schools. In churches. At home.
Dorothy Davis, educator Juanita Davis, and advocates Kathie Hiers and Sergio Farfan are models of the positive change that can happen when citizens take matters into their own hands: even in the most challenging environments; even if they have to use a candy bar to sugarcoat the bittersweet truth.
Excerpted from POZ (Jan.-Feb. 2011), an award-winning magazine for people living with and affected by HIV/AIDS. www.poz.com
This article first appeared in the May-June 2011 issue of Utne Reader.