Making sure HIV-positive women get the care they need

In the back of a skid row community health center, a woman with teardrop tattoos under her eyes begins to tell her story.

To a circle of other women, she says she ran away from home and joined a gang at 13. She started injecting PCP, and as a teen spent time in jail. By 22, she worked as a prostitute. At 37, she was diagnosed with HIV.

Now 50, the woman known as Hilda tells the circle that the only time she took her HIV medication was when she was in jail. “Why?” someone asks. “I wanted to die,” she answers.

Welcome to a weekly support session sponsored by the Ladies of Diversity, a federally funded program that works to give HIV-positive homeless women of color a reason to stay connected to medical services. Leaders allowed the Los Angeles Times to attend one gathering on the condition that clients be identified only by their first names.

The organization aims to better understand the challenges that keep infected black and Latina women from connecting to HIV care, said Tina Henderson, an HIV/AIDS researcher for 20 years and the program manager of the Ladies of Diversity.

California is one of eight states where such a project has been given money by the federal Health Resources and Services Administration.

Medications exist that can help people with HIV live longer, healthier lives. But more than a third of infected women are not in regular care and only a quarter have the virus under control, according to the Centers for Disease Control and Prevention. For women of color, this has had particularly deadly results, partly because this demographic is disproportionately infected.

Although black women make up 13% of the female population, they account for nearly 64% of all estimated new HIV infections compared with 18% of white women and 15% of Latinas.

CDC data also show that black Americans are least likely to be in ongoing care or have the virus under control once an HIV-positive status is known. As a result, black women accounted for 65% of all women who died from HIV in 2009 compared with 18% of white women and 14% of Latinas.

Ensuring that women of color get HIV treatment can prevent more deaths, Henderson said.

That’s where organizations like the Ladies of Diversity come in.

Every Monday morning, past sidewalks populated with skid row’s inhabitants, black and Latina women meet in the Center for Community Health on San Pedro Street and talk about God, addiction, sobriety, living on the streets and HIV.

Most say they waited for years after learning of their HIV status to take medication. When they did take the many pills needed to stay healthy, it was on and off.

“What saved my life was one, God,” Hilda said. But she also thanks a slew of treatment centers, support groups and case managers that helped her to stay sober for three years, that helped her get her first apartment, that helped her get her virus under control.

Women around her holler an affirmative “yes” after Hilda declares each of these victories.

Women of color, in general, face distinct obstacles to getting and sticking with medical treatments, said Kieta Mutepfa, an HIV/AIDS researcher at the UCLA CARE Center. Although HIV services are available, Mutepfa said, stigma prevents many women from seeking them.

Mutepfa also said she had worked with women who had told her that they dropped out of care because they didn’t like the way they were treated by physicians. “If providers are culturally incompetent, you’re not going to find a lot of people running to get treatment,” she said.

Add to that a lack of housing and the problems associated with poverty, Henderson said.

“When you’re homeless, you’re worried about survival and it’s not about HIV,” said 60-year-old Wanda, a Ladies of Diversity peer mentor. “You’re worried about where your clothes are because someone’s gonna take them.”

Medications are also prone to thievery on the street, she said. Then there’s the problem of storage. Some antiretroviral drugs need to be refrigerated, which is difficult for anyone who is homeless.

Wanda said she faced those obstacles when she was homeless in 2003. She was diagnosed with HIV in 1977, but didn’t start taking her meds until 10 years later. Wanda said she got HIV from her late husband, a former heroin addict. Her husband died in 1999, she said, a loss that triggered her downward spiral into drug addiction.

“I stopped caring,” she said.

Taking her medications regularly during her homelessness seemed like an impossible feat, she said, as equal doses of denial, depression and addiction kept her down. After years, she finally went into therapy. She got a case manager. She went to support groups.

She became one of the first peer mentors for the Ladies of Diversity, visiting missions and walking the streets of downtown Los Angeles with fliers in hand telling people about their meetings. “To sit someone down and say, ‘Take this medicine,’ that’s not good enough. We have people who don’t understand or have things going on with their life. Every day’s a struggle.”

Tonya Jessie said she saw the same thing as a peer support counselor at an HIV treatment center in South Los Angeles called SPECTRUM Community Services. She said she had worked with a lot of HIV-positive people who didn’t pick up and take their medications because they were embarrassed. “They don’t come because they don’t want anybody to see them coming. If someone see’s you in this place, it’s got something to do with AIDS.”

Jessie, 63, has had HIV for 20 years. She is not sure how she got it. It could have been from sharing needles or from not using condoms when she was supporting her drug habit through sex work, or from her husband, who died from AIDS-related illnesses in 2003. “When he came out of prison, he had only 20 T cells so he had had it for awhile,” she said.

Jessie says she’s been sober for 13 years. She’s in ongoing care. And she has her viral load under control.

“I take all my medications faithfully ... and I take them as prescribed,” she said.

Jessie said she attended a support group for women at SPECTRUM every Thursday. It’s part of a regimen she recommends to everyone she works with. “Take your meds, eat right, go to support groups and find people who are living with this just like you. That’s what I had to do,” she said. “I still learn a lot.”

titania.kumeh@latimes.com