By Susan Okie
Washington Post Staff Writer
Tuesday, September 2, 1997
Tameka Sauls was only about 14 when an adult cousin began losing weight and eventually died. She didn't learn the reason until long afterward.
"I didn't know she died from AIDS 'til, like, down the line," said Sauls. "Me and my mother were talking about stuff and it just came up. I was shocked."
As a student at South Florence High School, Sauls had taken the health education course that South Carolina public schools are legally required to provide. But, she said, the class never taught her about AIDS and other sexually transmitted infections. "It wasn't really sex education," recalled Sauls, now 18 and raising a 22-month-old son. "It was more like body development and differences between men and women."
This year, after two more relatives had died of complications from AIDS, Sauls enrolled in a federally funded training course as an HIV educator at a local adult education center. Smart and articulate, she's the kind of person other teenagers might listen to -- and her teacher is urging her to go on a local radio program to answer questions about AIDS. But Sauls is scared. She's afraid everybody will think she's infected with the virus. "They would say it just to talk," she said.
In some ways, what Sauls knew about AIDS -- and what she didn't -- illustrates the state of the nation's attempts to prevent the spread of the human immunodeficiency virus. Aggressive HIV prevention efforts proposed in the early years of the epidemic -- such as widespread condom distribution, clean-needle giveaways to drug addicts and frank sex education in schools -- triggered intense controversy and enormous political opposition in many more conservative parts of the country. Moreover, some public health experts argued that money spent on national media campaigns could be more effective if focused on those at greatest risk of contracting the virus. So three years ago, the federal government revamped the country's prevention strategy, abandoning a single national effort in favor of locally tailored efforts that it hoped would be both more acceptable and more effective.
Gone are the mass mailings and national media campaigns of the 1980s. The last crop of government-sponsored television commercials, produced in 1995 to promote condom use, are rarely shown anymore. The national AIDS hot line is running, but it gets only about 3,000 calls a day, compared with the peak of 189,251 on a single day in 1992, the day after a network television special on AIDS sufferer Alison Gertz.
Now that better treatments for AIDS are available, officials at the Centers for Disease Control and Prevention (CDC) in Atlanta are considering a new public service announcement campaign to encourage more people to be tested for HIV, but that project is still in the planning stages.
Instead, America's war against AIDS has fractured into thousands of local skirmishes, which are being fought in high schools and housing projects, bars and barber shops. These small grass-roots programs are designed to target groups considered at higher risk of infection, such as drug or alcohol users, young male homosexuals, minority women living in housing projects and sexually active teenagers.
Priorities for fighting the epidemic are set by community planning groups -- committees of public health experts, behavioral scientists, activists and ordinary citizens who try to figure out what will work best in their state or city. The result is a patchwork of locally designed and run prevention efforts as varied as the vast AIDS Quilt.
Supporters of the change say it was painful but salutary. Critics, however, contend that the quality, content and intensity of the efforts vary widely, and no one really knows if they are effective.
And the virus continues to spread. Despite recent improvements in AIDS therapies, and a slowing of the pace of the epidemic in the United States, an estimated 40,000 Americans continue to become infected with HIV each year. Public health officials are particularly concerned that the virus is spreading fastest among African Americans, Hispanics, young people, women and, in general, people who acquire the infection through heterosexual sex.
"The news is good news, but it's not as good for everybody," said Helene Gayle, director of the National Center for HIV, STD and TB Prevention at the CDC. "Our challenge is to make sure we can have the same benefits for all parts of our population and where there are inequities, address those inequities."
Officials such as Gayle acknowledge today's prevention efforts favor groups that are politically organized and experienced in health advocacy, such as gay white men, and tend to leave out others, including some of those at the highest risk. How to reach these groups, and how to ensure that more than $ 400 million a year in federal funds for preventing HIV infection is being spent effectively, are the subjects of fierce debate within the CDC.
Some critics charge that the new approach has allowed the pendulum to swing too far toward local control. In many parts of the country, conservative political groups have successfully opposed the use of prevention strategies such as needle-exchange programs or sex education for teenagers.
Sauls's home state of South Carolina -- a state that is predominantly rural and politically conservative -- is, in many ways, a good place to examine how the nation's new approach to stopping the spread of HIV is working -- and how it isn't.
Throughout the 1990s, the epidemic has been growing faster in southern states such as South Carolina than in any other region of the country. In 1994 (the last year for which complete data are available), South Carolina ranked ninth among the 46 states that measured infection rates in pregnant women, with a positivity rate of 2.2 per 1,000 women tested. AIDS has become the second leading cause of death among people age 25 to 44 in the state.
The patterns of disease transmission generally mirror national trends. As in the nation as a whole, South Carolina blacks are disproportionately affected: seven times more likely than whites to be infected with HIV, five times more likely to have a diagnosis of AIDS. As in the nation as a whole, men who have sex with men continue to make up the majority of South Carolina AIDS cases, although the rates among both male homosexuals and injecting drug users are stabilizing or falling. And as in the nation as a whole, HIV and AIDS rates among women in South Carolina are climbing, a reflection of the growing importance of heterosexual transmission as a driving force in the epidemic.
"You have a sizable proportion of people in these rural areas who are infected who really only have heterosexual risk," said the CDC's John Ward. In many cases, a CDC study indicates, people become infected after exchanging sex for money or drugs -- particularly crack.
In Sauls's home town of Florence, a sprawling town of about 31,000 surrounded by tobacco and cotton farms, an average of six people test positive for HIV each month at the local public health clinic.
Even so, the first step in fighting the epidemic is convincing people that AIDS is a problem in eastern South Carolina. Many people still consider AIDS a disease of far-off northern cities. When someone in a small South Carolina town dies with AIDS, local activists say, family members usually ascribe the death to some other cause -- cancer, a respiratory infection.
"That is the southern way," said Krista Heybruck, an HIV/AIDS health educator working in three rural counties in the eastern part of the state. "That's just the way it is, and that's what we have to work with. They are private here."
Ericka Burroughs, a young anthropologist who grew up in South Carolina and works for a federally funded HIV prevention agency, drives hundreds of miles each week to teach safe-sex classes and talk about AIDS at jails, schools, mental institutions and drug rehabilitation centers. She taught Tameka Sauls's HIV training course at the local adult education center. "I hardly ever do a presentation where there isn't at least one person who cannot read," she said.
With the help of federal prevention funds, local residents are coming up with new ways to increase awareness of the disease in Florence. Last September, Anne Neely, a biology teacher at Sauls's former high school, began offering an elective course in which students learn about AIDS and make videotapes about the disease's impact on their community. However, school administrators warned Neely that she couldn't use the "C word" -- condom -- or allow one to be shown on a student video.
Neely paid for video equipment for her course with a $ 1,000 grant, part of approximately $ 1.1 million that South Carolina received last year from the CDC for local HIV prevention programs. Students learn the details of how HIV is transmitted. Then they produce videos to bring home the reality of AIDS to other students.
Eleventh-graders Demetrius Brand, 16, and Asa Harris, 17, made a video about a football team with an HIV-infected player. "We're trying to show that you shouldn't be scared of AIDS because you can't catch it when somebody touches you," Brand said.
Sophomore Jessica Briggs, 15, said Neely's course filled in some of the blanks that were left after the health education class. "Some of the stuff we learned in here that other people can't tell you is some of the stuff we need to know, and it makes a lot of difference knowing it," she said. "Like how many people in Florence have it, and how close to home it can hit."
But Neely's course is unusual in South Carolina, said Doug Taylor of the Eastern Carolina HIV Prevention Collaboration, one of eight coalitions of community organizations in the state that receive federal prevention funds.
Health education classes often are taught by physical education or home economics teachers who don't always feel comfortable talking about topics such as sex and AIDS, Taylor said. Although a recent survey of North Carolina registered voters found that 96 percent supported school-based education about AIDS and sexually transmitted diseases, only five of the state's 91 school districts have adopted one of the AIDS education curricula certified by the CDC. A few other districts are using portions of one of the curricula in HIV education programs.
Taylor said his agency is trying to convince local school boards that the CDC-certified curricula, which contain explicit information about sex and how to prevent sexually transmitted infections, have been found in studies to reduce teenagers' risk-taking behavior, rather than encouraging promiscuity. But in South Carolina, it's a tough sell. "Some teachers aren't going to feel comfortable putting a condom on their finger in front of students," Taylor conceded. "That's just reality."
The CDC's decision three years ago to give local communities a major role in AIDS prevention presented a huge challenge for state and local health officials and activist groups. In cities such as New York and San Francisco -- longtime "epicenters" of the epidemic -- there were AIDS organizations ready and waiting to take on the job. But in many parts of the country, and particularly in rural areas, federal health officials discovered that no local activist groups existed to apply for the prevention funds. The agency found itself giving grants for grass-roots organizing.
"In many of the communities where HIV is now occurring, particularly in communities of color, one of the issues we've been dealing with at the CDC is that there's not a very well developed community organization infrastructure," said Ronald O. Valdiserri, deputy director of the CDC's National Center for HIV, STD and TB Prevention. "It's not like the infrastructure that grew up around white middle-class gay men."
When the South Carolina statewide community planning group began meeting in 1994 to try to set priorities, it was the first time that representatives of some constituencies, such as gay rights groups and African American organizations, had worked together. "A lot of people accused each other of hidden agendas," said Francisco Sy, an associate professor of epidemiology at the University of South Carolina School of Public Health who is the planning group's current co-chairman. "There were times during the first year when I thought the group would not survive."
Another of the planning group's founding members was DiAna DiAna, a Columbia hairdresser who had been one of the first South Carolinians to grasp the potential impact of the AIDS epidemic and to try to do something about it. DiAna was sorting magazines in her beauty shop one day in 1986 and came across an article about a woman who had been infected by her boyfriend. It was a revelation.
"Your clients always tell you all their personal business," DiAna said. "I knew who was sleeping with who already. Some days I'd do the wife and some days I'd do the girlfriend. Just putting two and two together, I said, 'This is going to be a mess.' "
She set up a small AIDS information center in her salon, giving away condoms and brochures. Then she began marketing "safer-sex kits," containing condoms, lubricants, latex squares to be used for protection during oral sex, and other equipment. Next came AIDS prevention programs for teenagers and for women, then a training course for hairdressers, barbers and other business owners on how to provide HIV education for their customers.
Although DiAna still works in her salon, HIV prevention has become a second career. She and a colleague operate a tax-exempt, nonprofit corporation, South Carolina AIDS Education Network. They charge $ 1,000 a day plus expenses to conduct workshops. DiAna had to add a storeroom onto her house to hold the cartons of multicolored condoms, T-shirts, safer sex kits, tote bags and literature. "I really thought it would be over in a couple of years," she said.
Nine of South Carolina's 46 counties still are not part of the regional collaborations formed to administer almost $ 1 million in federal funds and thus have received none of the money. Located in western South Carolina, they include some areas whose AIDS rates are among the highest in the state, said Dorothy Waln, the state planning group's other co-chairman.
"The [local] health department could have taken the lead and pulled some folks together . . . but they didn't," said Waln. "Who knows why?"
One reason is that in conservative regions like the rural South, many local organizations are reluctant to get involved in AIDS prevention. Although churches are among the most powerful local institutions in the South's rural African American communities, they have not taken an active role in preventing HIV and serving people with AIDS, said David James, a minister at Brooklyn Baptist Church in Columbia.
Thanks to James's efforts, his own church is an exception. In 1994, he announced to his congregation that he was HIV-positive. They responded by forming care teams to help people with AIDS and sponsoring educational conferences. James's attempts to get other congregations to follow his church's example have failed. Brooklyn Baptist remains the only African American church in the capital with an HIV ministry, and few exist elsewhere in the state. He said churches refuse to get involved because of the disease's association with homosexuality. "It's not the HIV," he said. "It's homophobia."
Harrison Ervin, a minister at Lake City's Wesley Chapel Methodist Church, which has formed an AIDS care team, said fear of HIV and of the stigma attached to the disease are additional reasons. "People shun away from it," he said. "Even individuals who have the illness shun the public." He said one woman in his congregation has known for two years that she is HIV-positive but has been afraid to tell her brothers and sisters.
But AIDS activists say the community planning process seems slowly to be changing public attitudes in South Carolina and other conservative states. After Gov. David M. Beasley (R) last January requested that the state health department stop distributing condoms to public clinics and private family planning and AIDS organizations -- saying the distribution implied "that the government condones behavior that many of our citizens view as unhealthy, inappropriate and in some cases illegal" -- AIDS organizations and other health agencies acted immediately.
"That morning the article [about Beasley's position] came out, we were all on the phone calling each other," recalled Carmen Julious of Palmetto AIDS Life Support Services, Columbia's oldest AIDS service organization. "We emphasized that it is responsible behavior to use condoms, whether you're male, female, heterosexual or homosexual."
Although condom distribution was halted for two weeks, health officials -- with broad public support -- ultimately were able to convince the governor that giving away condoms would prevent disease and save money in treatment costs. Distribution was permitted to resume provided that abstinence was emphasized as the preferred means of preventing infection.
CDC officials say the future of the epidemic depends on the outcome of countless local battles, such as the efforts in South Carolina to teach teenagers such as Sauls about AIDS and to keep condom distribution programs intact. If the state gains ground against the epidemic, the heroes of the South Carolina campaign will be DiAna, James and other local activists and health educators who have spent much of the last decade trying to change people's minds.
"Just the number of years they have put into it, doors slamming in their faces," said K. Allen Campbell, a member of the community planning group that sets HIV prevention priorities for the state. "They tell [people] what they don't want to hear, but after a while they have to listen."