Fellowship Story Showcase
Treating HIV/AIDS in Fort Worth
Jan Jarvis wrote the following two stories during her Fellowship:
Every Tuesday, the Chosen Ladies of Distinction, as they call themselves, meet for a fast-food lunch.
There is laughter, bickering and often tears.
On this Tuesday in June, there is more than usual.
Sharon, 37, talks about a 17-year-old she knows who recently learned she was HIV-positive.
"It has just messed me up," she says as she wipes tears from her cheeks.
Sharon was 15 when she learned she had contracted HIV from a blood transfusion.
"The health department came in and escorted me to JPS, and they confined me in a room," she says, the tears now streaming. "I will never forget the day they told me."
More than two decades later, this mother of four cannot hide the pain of living with HIV.
"It hurts, really hurts," she says. "I just want to be accepted."
Sharon and the Ladies represent the face of HIV in America today. All of the women are members of the Sista to Sista support group at the AIDS Outreach Center in Fort Worth. The support group is open to all women, yet all of its members are black.
HIV is no longer just the scourge of gay populations in cities such as San Francisco, New York and Chicago. Instead, seven of the 10 states with the highest rate of HIV cases are in the South, where it’s ravaging African-Americans, particularly black women, who account for about two-thirds of the 127,000 women with HIV nationwide.
Overall, blacks make up 13 percent of the U.S. population, yet they account for nearly half of the more than 1 million Americans with HIV.
Contracting the virus
AIDS workers say there are myriad reasons for the rise of HIV/AIDS cases among black women. But the shortage of single black men, a lack of self-esteem and, in some cases, drug addiction play prominent roles.
"There’s the typical stuff – racism, low education and poverty – that makes them vulnerable," says Vera Owens, a minister with the Minority AIDS Project in Los Angeles, the first community-based AIDS organization established by blacks. "But really what is happening doesn’t have anything to do with race."
Black women are so used to being caregivers that they don’t know how to take care of themselves, she says. That’s why the L.A. program focuses on building self-worth in girls, before they reach high school.
"We’re trying to teach them that their needs are just as important as his needs," she says.
It’s a lesson that the Ladies of Distinction – an eclectic blend of 30-somethings juggling jobs and families, and grandmas on disability – are still trying to learn. With their floral sundresses and matching hoop earrings, the younger Ladies look as if they’re ready to go out on a date. The grandmothers of the group may be more inclined to wear sweats, but they’re just as feisty when it comes to conversations on everything from the latest hairstyles to men gone bad.
While in their teens and early 20s, many of the Ladies say they never gave HIV a second thought; it was a gay white man’s disease. They didn’t use condoms when they had sex. Some were with longtime partners who were intravenous-drug users. Others had sex with strangers. Some got lost in a world of alcohol, drugs and mental illness.
AIDS workers say protection is not a top priority for many of the people they see getting tested.
"If you have $20 in your pocket, are you going to spend it on entertainment or a box of condoms?" asks Daphne Myles, executive director of the Tarrant County AIDS Interfaith Network in Fort Worth. "For a lot of people, condoms are at the bottom of their list."
Nationwide, 80 percent of women with HIV were infected by having sex with men.
In 2003, 61 percent of black high school students reported being sexually active, compared with 43 percent of whites, according to Advocates for Youth, a Washington, D.C., advocacy group. Among black teens, 16 percent reported four or more partners. One study found that nearly one-fourth of teenage black girls said their first sexual experience was with an older man.
Exacerbating the issue is the way young girls are perceived in pop culture, says Carla Stokes, an AIDS activist and founder of Helping Our Teen Girls in Real Life Situations (HOTGIRLS), a nonprofit organization dedicated to improving the health and lives of young black women.
They are often viewed as sexual objects, especially at an early age, she says.
What really matters is not how many sexual partners someone has but what is going to happen to the black community 50 years from now if nothing changes, says Jasmine Burnett, development associate for the Black AIDS Institute in Los Angeles.
"The world we live in is the world today, not the world we want it to be," she says. "We have to deal with the problems today based on what people do. We have to meet people where they are.
"What we need is to teach people to be empowered."
The support group at the AIDS Outreach Center has given the Ladies a safe place to learn how to stand up for themselves and build on their fragile egos.
"Before this support group, I was really depressed," says Karen, who has struggled to protect her family from the stigma of her diagnosis. "I felt ugly because of this disease."
Sharon, who was eight months pregnant when she was diagnosed with HIV, says that every day of her life, she worries about how HIV affects her four children, who have all tested negative. Her anger and terror show in how quickly she cries when she talks about long-forgotten dreams of being a model.
"HIV has shattered my life," she says.
Veronica, 36, sees how desperate so many women are to find love, but she urges the group members to shift their attention to themselves.
"We have got to learn to love ourselves," she says.
Prison's revolving door
Much has been made about black women becoming infected because of sexual relationships with gay or bisexual men living on the "down low," or masking their sexual identities by having sexual relationships with women.
But through 2003, estimates linked only 3 percent of AIDS cases among black women to bisexual men.
Instead, AIDS workers point to the high numbers of black men going through the revolving door of prison. Nationwide, 39 percent of inmates were black men as of June 30, 2007, according to the Justice Department. Seventeen percent of people with HIV or AIDS have been incarcerated.
In Texas, an estimated 2,500 prisoners have HIV or AIDS.
The high rate of incarceration among black men, especially in the South, combined with a high mortality rate due to homicide, disease and other factors, is a contributing factor to HIV among black women, Stokes says. This unbalanced sex ratio has left young black women at a disadvantage.
One of the most outspoken AIDS advocates in Tarrant County was Lady Hogan, who died in 2007. A black woman, Hogan talked about how she was infected by her husband of 17 years, who had been in and out of prison.
He never admitted that he had the disease that killed him in 1995. She was 38 and the mother of three when she tested positive.
In 2005, the state began testing offenders upon their release. Last year, testing at arrival became required. The combined data is expected to paint a more accurate picture of how many prisoners are being infected while in prison.
"It’s not that all African-American men are messing around in prison, but a great majority are," says Jerry Wyatt who had HIV when he began serving a five-year sentence on drug charges in 1995. "I’ve seen it happen with all races."
Society wants to pretend that it’s not happening, but it’s a part of human sexuality, Owens said.
"You have men coming out of prison who had sex with men and they’re not really gay, they’re just taking care of their sexual needs," Owens said. "He’s not going to practice homosexuality when he gets out of prison; he’s coming home to his wife."
Right now, 80 percent of the positive tests are at the time of intake, says Dr. Michael Kelley, director of Preventive Medicine for the Texas Department of Criminal Justice.
The human rights organization Stop Prison Rape found that HIV is four times more common in prisons than on the outside. Prisoners with HIV have access to treatment, but only about 65 percent of inmates take medication.
They often refuse because everyone will know they are positive and they’ll be targeted by others, says Jeffrey Green, a public health official who works with inmates when they are released.
"Most heterosexuals are not honest about having sex with men while they are in prison," Wyatt says. "It’s hard to confess to a spouse, and African-American men especially have a real problem admitting it."
Living with HIV
"We hurt, we feel like everyone else," Sharon says. "We do not deserve punishment."
But society heaps it on. The stigma of HIV silenced Sharon for years. Like others, she lives in fear that her children might be ostracized.
Although many of the Ladies have jobs, they fear that they will be persecuted if their employers find out.
"People don’t want their employer to know they have HIV," says Shannon Hilgart, associate executive director of the AIDS Outreach Center.
The stigma of AIDS has left the nation with a generation that would rather die from the disease than admit they have it, Burnett says.
From 1985 to 2004, there were 225,000 AIDS deaths among whites. But blacks, despite being a much smaller group, were close behind with 196,000 deaths.
Today far fewer are dying, largely because of some 30 medications that are used to treat the virus, says Dr. Elvin Adams, Tarrant County Public Health’s medical director.
"In Tarrant County, there are less than 10 deaths a year," he says.
Most people take one to four pills daily, which costs $1,500 to $2,000 a month when there’s no insurance or federal aid. To be eligible for assistance, an individual must be living below the federal poverty level.
A growing number of people get by without taking any HIV medications.
As long as her T cell count stays above 330, Veronica says, she doesn’t have to take any medications and is trying to avoid them. But recently, when her T cell count plunged, she did some soul-searching.
"I put a brave face on and I was saying I was all right," she says, "but those things are not what was in my head."
Many people with HIV try to avoid taking medications, either because they have no health insurance or they fear the side effects.
The medications are easier to live with, but keeping up with the schedule is challenging, Myles says.
Missing just one pill is risky. It gives the virus time to multiply and become resistant to the drugs, Adams says.
Think of the medications as a fence that keeps the virus out. Miss one dosage, and suddenly there’s a hole in the fence that allows the virus to slip through.
Soon the virus mutates and takes over.
Once that happens, the drugs used to treat the disease – along with all the medications in that class – stop working. But it’s not just the person with HIV , who has fewer choices when it comes to medications. Anyone that person infects will also be resistant to the drugs.
Changing minds, hearts
At the weekly Ladies gathering, Karen speaks up: "I want a relationship, but I am afraid to tell him I have HIV."
Veronica says that her new husband didn’t care when she told him.
"It’s where your heart is," she says. "We can’t make everyone love us."
Another member pipes up that she found love after HIV and that her husband isn’t bothered by the diagnosis.
Karen insists: "If a person knows you and likes you, HIV shouldn’t change their mind."
AIDS in the black community Of the 992,865 AIDS cases reported to the CDC through 2006, blacks accounted for:
40 percent of total
60 percent of women
59 percent of heterosexual people at high risk
59 percent of children 13 and underResearchers take a new look at existing drugs
After more than two decades and 150 prevention trials, there’s still no vaccine against AIDS. Pharmaceutical company Merck spent 10 years developing a vaccine only to stop its trial after 24 of 741 volunteers who received the vaccine became infected with HIV.
Around the world, scientists are searching for ways to prevent the disease.
In Dallas, researchers have turned their attention toward preventing the transmission of HIV using drugs already available. So far, they have developed "humanized" mice and infected them with the virus, and their studies could lead to a way to prevent the infection in humans.
Infectious disease expert J. Victor Garcia is on the UT Southwestern Medical Center team that is studying how the virus affects mice and how that information could lead to advances in preventing HIV.
Q: Is AIDS still an epidemic?
A: It is worse than it has ever been. People think the epidemic is occurring only in Africa, India and Thailand. But when you look at new infections in the United States, Washington, D.C., is one of the worst places. No place in the nation is of more concern. It has the largest number of babies infected with HIV. Mostly blacks are affected. When you look at HIV cases in Africa and Washington, D.C., you won’t be able to tell the difference.
Q: How is HIV different today than it was 20 years ago?
A: The epidemic is shifting from males to women.
Q: Why women?
A: Men in many parts of the world have the ability to protect themselves, but women don’t have that option. They need to be helped and allowed to protect themselves from catching a deadly disease. In many instances, women don’t have a way of saying, "I don’t want to engage in high-risk behaviors." We have great interventions to prevent mother-child transmissions, but we have to know that the mother is infected. If she doesn’t have appropriate prenatal care, we’re back to where we started.
Q: What happened to the vaccine?
A: It is very clear that there is no vaccine in sight. It is going to be a while before we really come up with something that is protective. People are devoting their entire lives to trying to come up with a vaccine. The problem is it is harder than anyone ever imagined. We’re addressing what can we do now to prevent transmission. The concept we’re working on is pre-exposure prophylaxis or preventing transmission. We can use a topical preparation that can be used vaginally or rectally to prevent HIV from spreading. There have been four or five clinical trials to see if that approach works. None have, and some have made things worse. With the Merck vaccine, the transmission rate was higher than it was for persons who had the placebo.
Q: What is available for patients?
A: We have FDA-approved drugs that have been shown to work. But the virus can change and become resistant to any medication. HIV will respond to a single medication very effectively, but if you use multiple agents it becomes more and more difficult for the virus to get around different medications. The magic number is three medications. Triple-combination drugs tend to be able suppress the infection.
Q: What are you focusing on?
A: We’re looking at whether you can you use a drug that is normally used to treat HIV and use it to prevent transmission. We developed mice made to be partially human — humanized mice — and challenged them with pathogens that only infect humans.
Q: If you give somebody an antiviral used to treat the disease, can you prevent transmission?
A: Yes, you can literally prevent transmission.
Q: Where would this be used?
A: In Africa, where 20 percent of people around you have HIV, you need to take antivirals as long as there’s the potential of being exposed. You could take them indefinitely: once a day, every day, as long as you are at risk.
Q: What about long-term side effects from the drugs?
A: Every single drug has side effects. We have to balance what’s worse: side effects or the risk of exposure to HIV.
Q: What’s happening now with antiviral research?
A: Two clinical trials have enrolled 10,000 patients to see if the concept works in humans.
Q: Do you think there will come a time when people in the United States would take an antiviral to prevent transmission?
A: I hope that the epidemic in the U.S. never gets to the point where people have to take an antiviral every day. One thing we have to keep in mind is we have to intervene. Treating infected patients is not going to slow down the epidemic. The good news is every day we have new agents to treat HIV. We are staying a little ahead. I am highly optimistic about the progress being made. The prospects for prevention are very good. Once we stop the spread of HIV we have a better chance of stopping the epidemic.
jjarvis [at] star-telegram [dot] com
© 2008 Fort Worth Star Telegram (used by permission)