People ask Promise, 23, about it all the time. "It's for HIV-AIDS awareness," she'll tell them at first. If they want to know more, she obliges. "I tell them that I'm infected," she says, "and that I think that it's important for people not to hide."
Today, there are 1,300 HIV-positive women living in New Orleans. Promise (who goes only by her first name) is one of two local women willing to be completely public about their HIV status. Most other local women stay quiet because of multiple worries -- that their families will fear infection from them, that their children may be teased and mistreated, and that their friends will think less of them because their partners (to whom they were faithful) were sneaking around on the side.
Beth Scalco, head of the Louisiana Office of Public Health's HIV-AIDS Program, describes what she's seen statistically. "Way back," she says, "we were looking primarily at white gay males. Then we started seeing African-American males, then African-American females." The number of women rose quickly, she says. "I can remember when we hadn't even reached 8 percent female -- about 10 years ago." By last year, one-third of New Orleanians newly diagnosed with HIV were black women. That number has been rising rapidly.
Maybe you wouldn't know it because no one's talking. "If I find some open-minded people, I'll tell them my HIV status," says Erica Hutchinson, 34. "But I notice that you can't be open to a lot of people because of their ignorance about the disease."
One young HIV-positive woman says that her family set aside a set of dishes and drinking glasses just for her. "Sometimes if I was sweating and went to open the refrigerator, my father would ask me to use a napkin," she says. Other women report threats, name-calling and violence.
Barbara Brown sees this hostile attitude firsthand in her role as head of Family Advocacy, Care, and Education Services (FACES), which provides HIV-AIDS social services to about 800 local women and youth. "The stigma to HIV hasn't moved for 20 years," says Brown. "People think, 'gay, drug user, promiscuous.' They see it as a punishment."
As a result, most women here in New Orleans say that they keep their diagnosis as quiet as possible. That often means not telling their family, friends, neighbors, even their kids. "In death, there's still no acknowledgement of HIV. They'll say it was cancer or something else," says Brown.
"New Orleans is still in denial," asserts Jennifer Laners, program director of the Uptown-based Inner-City Minority AIDS-Cancer Awareness and Outreach Program. "People always know someone -- 'my cousin, my sister, my this or my that' -- who's (HIV) positive," says Laners. "But I've come in contact with no one here who is 'out' about her status."
Sabrina, 37, found out that she was HIV-positive and then went clothes shopping. "I had a cream-color pantsuit all picked out," she says. "I bought it for my casket." Then she planned her whole funeral and named all her pallbearers. "I thought I had been given a death sentence," she says.
Today, nine years later, the suit still hangs in her closet, and she's seen all her pallbearers leave her as, one by one, they've been murdered. But Sabrina (who asked that we not use her real name) is healthy, taking pills twice a day and acting as a peer counselor for HIV-positive people who have stopped their treatment. She's unbelievably effective in this role, says FACES director Barbara Brown. "I wish we had 10 of her."
FACES began 15 years ago after the federal Health Resources and Services Administration (HRSA) and the federal Maternal and Child Health Bureau funded Children's Hospital to provide services to local HIV-positive children and their families. Today, their caseload stands at 800, which includes some kids but mostly women ranging in age from about 14 to 60. Ninety percent of FACES clients are African-American; 78 percent contracted HIV through heterosexual sex.
Almost all have incomes at or below the poverty level, which can make HIV treatment less of a priority. "You can't talk to anyone about doctors when they're being evicted tomorrow," explains Brown. That's why FACES -- in addition to the obvious health care and counseling -- helps its clients pay for transportation, rent and utilities. The program also provides on-site day care, laundry services, prepared food and a food bank. Peer counselors like Sabrina are essential, says Brown, because "women want to hear from other women."
Sabrina was diagnosed in the mid-1990s, when she became pregnant, a common time to be diagnosed because routine prenatal care includes an HIV test. She was clean at the time and had been for about a year and a half. In previous years, she had struggled with the world of crack cocaine, where it's not unusual for addicts to engage in high-risk sex or to trade sex acts for drugs. She finally entered drug treatment, and on her way in, took an HIV test. The results were negative. "I thought I was OK," she says. She now stresses the importance of re-testing if there's a chance of recent exposure. The test measures antibodies to HIV, and the immune system typically takes between two and six weeks to build up enough antibodies to be detected.
Sabrina -- like other pregnant woman at that time -- had nearly a 1-in-4 chance of passing on the virus to the infant she was carrying. But Sabrina's baby daughter was born healthy, thanks to a clinical trial testing the HIV drug AZT as a way of stemming transmission from pregnant women to their infants. In 1996, when prescribing AZT became standard practice during pregnancy, the rate of perinatal, or mother-to-child, infection plunged across the nation. Since then, in Louisiana, the odds of a mother passing on the virus to her child have stayed consistently at 1 in 20.
Before she was diagnosed, Sabrina says, she used to think that a partner's HIV status would be obvious. "In my community, the African-American community, we think you can look at someone and just know," she says. Today, Sabrina herself disproves that point. No one could tell that she's been HIV positive for nine years. She's fit, trim and upbeat.
Like most FACES clients, Sabrina has a few main reasons for keeping her diagnosis quiet, namely her two children. She worries that people will taunt them or that people will think that her daughter must be infected, too. Sabrina had told her son, who's an adult, right away. Her daughter, who's now 8, wasn't told about her mother's virus until she started asking, 'Mama, why are you taking all those pills?'"
She has, by now, disclosed her HIV status to more people than most women have, she says. Her mother and father know, and so do her sisters and her kids. "But my aunts, uncles, and cousins -- they don't need to know," she says. Neither do her neighbors, she says. "It's the rumor in my neighborhood that I have AIDS, but now people say, 'I've heard that, but I don't believe it. Look at her -- she doesn't look sick.'"
If necessary, Sabrina tells her life story to help other people understand why they should get back on their medication. Yet she intimately understands how addictions can stand in the way of treatment. "That drug is calling you louder than Charity's HOP (HIV Out-Patient) clinic or anything else," she says.
Then, there's the sheer volume of pills that can be required. "I know people who take five pills in the morning, five at noon, five at night -- some with food, some without," says Sabrina. The side effects can be brutal: rashes, nausea, chronic diarrhea. Things can get dicey if you're trying to keep your condition a secret because people nearby are bound to be curious about all those pills and pill bottles.
Some women can't believe their results were correct. "This happens especially with women who have been faithful and think their husbands have been faithful, too," Sabrina explains. At FACES, they refer to this phenomenon as "men on the down low" -- guys who sleep with others, especially other guys, without telling their girlfriends or wives.
Tony Wafford believes that it's time for black men to own up to intimacy with other men. "We're not being honest about how these women are becoming infected," says Wafford, speaking to Gambit Weekly backstage at the recent Essence Festival. Wafford's brainchild -- a Los Angeles-based program called Fighting HIV Through R&B -- asks people to take a confidential HIV test in exchange for tickets to events such as Essence. Nationwide, his organization has tested about 8,000 people in the past year; 237 have been positive. Most have been women of color, which is precisely why Wafford got involved. "I have a 24-year-old daughter," he says. "That made the light come on in my head."
In Barbara Brown's office, deception seems to be the rule, not the exception, she says. "Most times, if we have a woman in here, her partner's positive. But he'll tell her he's negative." Sabrina, too, sees the double lives. "I'll see young men going out with older guys for the clothes and the money, but they still have a girlfriend in the neighborhood."
Which makes it even more important for women to take responsibility for themselves, says Sabrina. That means using condoms and getting tested. "My girlfriends and I were all doing the same thing, running through the same streets, sleeping with the same men," she says. Now she knows her status; but her girlfriends don't. And they won't, she says. "They tell me they don't want to know."
They're not the only people avoiding a possible diagnosis. Last year, one-quarter of the newly detected HIV cases in New Orleans had progressed to full-blown AIDS by the time they were first diagnosed. About 60 percent progress to AIDS within one year of diagnosis. That means that the virus had already been present for years.
Some local pastors are also in denial. Brown recalls a woman who was told, "We'll pray for you, but we don't believe that you have HIV." Sabrina has seen the same thing. "Where my mother lives, you can't tell the churches you have AIDS. You'd better tell them you have cancer."
The whole situation reminds Sabrina of an African proverb. "He who conceals his disease cannot expect to be cured," she says.
In the St. Bernard housing project, Tamachia Davenport is known as one of the "condom ladies." Her five-member team stops in the St. Bernard twice a week -- Tuesdays and Thursdays from about 4 p.m. to 6 p.m. In their backpacks, they carry coloring books, brochures and condoms (female and male).
They're part of Camp ACE -- Alert Community Empowerment -- and they're based nearby at St. John No. 5 Baptist Church. Davenport's father, the Rev. Bruce Davenport, presides over the church, and she can recall what spurred their first outreach efforts, back in 1989. "We had high blood pressure, diabetes, HIV, a whole congregation full of health problems," she says. Now kids can get help with schoolwork, and adults can test their blood pressure or get a confidential HIV test in one of the three buildings that the church owns on Hamburg Street, right on the edge of the St. Bernard project.
Davenport is an outreach worker with a master's degree in social work. Her group is under contract with the state HIV-AIDS Program to cover all the high-risk sites within the New Orleans ZIP codes 70122 and 70127. All of this city's ZIP codes are covered by contractors like Davenport, although hers is the only faith-based group in town, says Jacky Bickham, the prevention coordination supervisor for the state HIV-AIDS Program and the person who oversees street-outreach contractors like Davenport.
The HIV-AIDS Program's research has shown that a person who has had contact with a street-outreach worker within the last six months is more likely to use a condom. Their analyses have also shown that when the state of Louisiana distributes more no-cost condoms, condom use rises.
The target areas for Davenport's team are initially determined by gonorrhea rates, since gonorrhea is also transferred sexually and is a "reportable disease," which means that the state knows home ZIP codes and census tracts for anyone diagnosed with it.
Then, the outreach team hones in on their targets through informal conversations. "We talk to the nosy ladies, gatekeepers, addicts, youth, teen mothers, parents, even the police and church leaders," she says. They find out where people are smoking crack or shooting up, and then make a swing by those areas. They stock free-condom fishbowls in area beauty parlors, barbershops, grocery stores, churches, liquor stores, clubs and daiquiri bars.
Davenport recalls when she first started doing HIV prevention in 1997. People thought they couldn't get the virus, she says. "They thought it was a gay man's disease," she explains. "Now almost everyone knows somebody who's infected." One of their most frequent questions is "What is sex?" Despite what people think, she says, practicing withdrawal doesn't make sex safe, nor does douching afterward. Guys will tell her, "It was just a little Bill Clinton, that's all." Not safe either, she says.
Street outreach workers also talk about how to negotiate condom use with partners, which can be tricky because it raises questions like "Why? You got something?" or "Don't you trust me?" or "Are you fooling around?"
Davenport and her team will personally deliver HIV-test results. Sometimes, the recipients have then asked her to tell their partners that they're HIV positive. She does, following the state Office of Public Health (OPH) procedure. If asked by an HIV-positive person, the state will send a disease specialist to notify a list of that person's partners over the previous 10 years. Without naming any names, the specialist will inform the partners that they may have been exposed to the HIV virus and that they should get tested. It's a popular service -- out of the 1,200 new HIV cases in 2002, close to 500 people asked OPH to notify their past partners.
A few older people do raise their eyebrows at the idea of church workers handing out condoms and talking about safe sex and drug use, says Davenport. "People often equate HIV with drugs, fornication, adultery, even God's punishment," she explains. But not everyone feels that way. Some ask for information and condoms to give to their grandchildren, nieces, nephews or neighbors. The very young kids, by the way, only get coloring books -- no condoms, Davenport emphasizes.
When her team heads into a target area, they primarily focus on black women. "We tell them that the rates are getting high and why -- heterosexual contact," she says. "We say, 'He may have been infected beforehand or while he was incarcerated,' and we explain it in layman's terms." For instance, says Davenport, she will say, "If I get 50 black men standing here, one of those men is HIV-positive. If I get 150 black women, one is HIV-positive."
"In the same breath," says Davenport, "we have to keep in mind that HIV may be way down the line for the person we're talking to." First, she says, comes rent and utilities. "So while I teach her to pay her light bill, I try to teach her about HIV."
Back in 1995, Erica Hutchinson followed her instincts. "Something just told me to go get tested. I found out I was positive," she says.
Looking back on it, the 34-year-old feels like she should've known that her boyfriend was sick after looking at his old photos and hearing some of his symptoms. "He was in denial," she says. So was she, in retrospect.
Then she picked up a crack habit and went off her medication for about three years. Some months ago, she also became homeless. That's not uncommon -- some studies estimate that between 5 and 10 percent of the homeless have a positive HIV diagnosis. In New Orleans, according to the most recent survey done by UNITY for the Homeless, nearly two-thirds of the HIV-positive homeless were women.
Now, newly clean, Hutchinson wants to get back on track. She hopes to have an apartment soon, and she would like to "just stay there and tune in on my medication." She's not really sick right now, just a lung infection. "But I could be, so I need to start taking those pills."
She remembers being nauseated by her prescriptions the last time. All the instructions were also frustrating -- like when the medications should be taken, if they should be taken with or without food, or if they are counteracted by fatty foods. "That's a problem for me," she says, "because I don't know what is fatty foods and what's not. I gotta get that down pat."
She does, however, have instructions for her boyfriend down pat. "You either wear condoms," she told him, "or we don't have sex. It's just that simple." For him, it seemed more complicated, she says. "He said, 'I don't want you to save me from anything. I want to have sex without a condom. I can't feel anything with a condom and I just don't like wearing them.'"
Among their HIV-positive clientele, this to-wear-or-not-to-wear tension is very common, FACES director Barbara Brown emphasizes. "Women say that their partners tell them 'I don't care if I get it; you have it; we're going to be together.' Some men just don't want to wear condoms -- period."
Tulane University professor of epidemiology Patty Kissinger has specifically studied HIV, women and condom use. Men do refuse to wear condoms, she says, but often she's finding that women also are not asking men to wear them. "Sex is spur of the moment, they're just not planning ahead or they don't have one with them," she says. "There are myriad reasons why it doesn't happen. But we know that it definitely doesn't happen." Or, she suggests, a guy who continually refuses to wear condoms might already know he's positive.
Both Brown and Kissinger have heard that some men tell their partner that they don't mind being infected because they love her too much. "I think it's genuine when they're saying it," says Kissinger, "but then when they really get it, they get angry and break up with the woman."
The national Center for Disease Control (CDC) has, as of this year, shifted its focus in a couple of ways. Doctors will now offer HIV tests routinely to any patient who receives care. Instead of a more broadly based outreach directed at those who are not infected, prevention efforts and resources will be aimed more at HIV-positive people. Some people are concerned about this shift, partly because they believe it may place the burden for prevention more on the HIV-positive person rather than her partner. But Kissinger believes the approach makes sense. After all, she says, "those are the folks who are spreading the infection."
For her part, Hutchinson says that she will not be spreading her strain of the HIV virus to anyone -- no matter if he is infected or not. "Even if we were both positive, my doctor said that you can re-infect me or I can re-infect you," she says. These re-infections can also complicate HIV drug therapy, since different strains of HIV are often resistant to different drugs.
"Sometimes men just make excuses for their comfort," Hutchinson explains. "But it's my health -- and I put my foot down and told my boyfriend that."
In St. Louis, Promise was known as "that girl who talks to people about AIDS." She began speaking to her own high school and then spoke to probably half of the schools in St. Louis, she says. It got to the point where, when she was walking down the street, parents would stop her and ask her to speak to their children about AIDS prevention. In 2001, the AIDS Foundation named her one of 20 activist heroes in the city of St. Louis. She commemorated the occasion by getting her red AIDS-ribbon tattoo.
Promise has also been, justly, called a "media darling." She's been a guest on the BET show 106th & Park, pictured on a National Testing Day poster, and written about in Newsweek magazine.
Then, three months ago, Promise moved to New Orleans, for a change of pace, she says. She immediately saw a difference. Here, she says, HIV-positive people seem to be hiding. Not that she doesn't understand why. Since she first was diagnosed seven years ago, she's had people call her an AIDS-infected so-and-so, even chase her with a gun because she's outspoken about her HIV status. Not long after she had been diagnosed, an old friend called to see if she'd died yet. And a friend of hers was recently stoned in Soweto, South Africa, for speaking out about AIDS. "This is not a light subject," she says.
Promise contracted HIV a few weeks after her 16th birthday, after being raped by an older man she'd been dating. She fell asleep watching TV and woke up to find her hands bound. Then he raped her three times.
First, she discovered that he had given her two sexually transmitted diseases. Then, just as she was entering her sophomore year, she caught a cold that just wouldn't go away and -- after a battery of tests -- came up positive for HIV. She thinks that her rapist was fully aware of his HIV status and had probably been taking medication because the strain of HIV she contracted from him was already resistant to quite a few drugs. Later, her suspicions were strengthened when she ran into him, and he laughed and called her "number nine." She now knows other girls who were infected by him when they were as young as 13. It seems like he deliberately preys on younger women with low self-esteem, she says. At the time, she fit that description.
Promise had suffered sexual abuse before, but after he raped her, she became determined that he would be the last person to treat her that way. She had also been involved with drugs and gangs, getting poor grades. She believes that jail was probably inevitable.
"So for me, to find out I was sick was a blessing," she says. "Of course, my first thought was to go out and kill him," she admits. "And I wouldn't tell anyone to go look for this. It's not fun to go through. But I was too passive, and the virus has made me stronger." After her diagnosis, her GPA soared from about 1.0 to a 3.8, she says.
Her spirits do get low, she admits, wiping away a few tears. "Sometimes I do feel like this is going to end up killing me. Other times I feel it's a germ eating away at me."
Promise was born in Botswana, Africa, and lived there until she was 5, although she has no discernible accent. The name she was given at birth was in Setswana, the language of Botswana and means "promise" when translated into English. Currently, Promise's native country has the highest adult HIV infection rate in Africa -- nearly 40 percent of adults in Botswana were HIV-positive at the end of 2001, according to a July 2002 United Nations report.
"It's ironic that I came halfway around the globe to become infected by HIV when I could've gotten it right in my hometown," says Promise. While visiting Botswana, she saw 14 funerals for AIDS victims go by in one day. "They were baby coffins," she says. "And not a day goes by that you don't see an orphan who's lost his parents to AIDS."
Within her extended family, some people have become infected and must sometimes wait three months to even see a doctor. "A relative of mine is HIV-positive," says Promise. "She just had a baby and doesn't even know if it's infected yet. And she can't get medication. While here I am in America, with access to all these medications."
Promise emphasizes that she and others owe a debt to early activists for that wealth of medication. "The way that we got all this care is through the gay population," she says. "If they hadn't laid on the streets, we wouldn't have gotten what we have today." In New Orleans, gay men still make up the biggest share of people living with HIV-AIDS. But that may not be the case in a few years. As a result, says Promise, women will need to step forward, to push for more health care and child care.
The years to come may be a real struggle for HIV-positive women, she says. "I think it's going to be hard for women to step forward everywhere, not just in New Orleans. Programs like FACES can help to start the challenge for women and families. But it's going to take everyone to accept what's going on, to open their eyes a little bit more."
Until that happens, this generation may be making life more difficult for those to come, says Promise. "The more our community denies what's going on here, the more people are going to shelter themselves and isolate, and the more HIV is going to spread. That's what our next generation of kids will face."