HIV’s Hidden Victims

Claudia Pena keeps three votive candles burning in her Cudahy apartment -- one for each of her children and one for herself.

Every day, she says, she prays to stay well enough to care for Jessica and Christopher, at least until they can care for themselves.

“I don’t ask for much else,” she says.

This is not the life she had expected. Like many illegal immigrants, she lived with the fear of being deported. But she was healthy. Her days were consumed with work, and hope for her children’s success.

She and her boyfriend, Jesus Castillo, met as teenagers soon after she came to the U.S. from El Salvador. They were high school sweethearts. They lived together for more than 10 years and started a family. She worked the register in a doughnut shop. He cleaned carpets, although he had a drug problem.

“I wasn’t the person who used drugs or slept with other men,” Pena said. “I stayed home, went to work and cooked and cleaned for my kids.”

On a June morning more than three years ago, her boyfriend came down with a high fever and could barely breathe. Blisters clustered around his mouth.

She took him to the emergency room at Los Angeles County-USC Medical Center, where he was admitted with pneumonia. When she returned to check on him, a doctor asked a surprising question: Had she been tested for HIV?

A few weeks later, at a local health clinic, she learned that she was HIV-positive.

“I knew that my life was not going to be the same anymore,” Pena said.

Her mind filled with questions: How long have I been infected? Will I get AIDS? Are my children OK? Who will look after them if I can’t?

She thought to herself, This can’t be happening to me.

Pena, 34, is one of HIV’s hidden victims.

The number of illegal Mexican and Central American immigrants with HIV or AIDS is unknown, in part because researchers rarely ask about immigration status.

But studies of Latinas in general indicate that more and more are being infected with HIV, often by husbands or boyfriends secretly using injection drugs or having sex with other men.

“Latina women are not aware of what their sex partners are involved in,” said Juan Ruiz, chief of HIV/AIDS Epidemiology for California’s Office of AIDS.

The rate of HIV infection among Latinas in California is about twice the rate among white women. Most are infected by heterosexual partners, according to the Office of AIDS.

Much attention has been paid in recent years to the plight of black women, who make up the largest percentage of women in the state with HIV and AIDS. But Latinas are not far behind. At the end of June 2005, about 30% of all women with HIV were Latina, compared with 36% African American.

Like many black women, Latinas often do not discover they are HIV-positive until they or their partners become ill, so they fail to benefit from early treatment.

Once their condition is diagnosed, Latinas often keep it a secret -- even from their own families.

“They don’t know how to tell their children,” said Evelyn Renderos, who works at the AIDS Service Center in Pasadena. “They don’t talk about it.”

Among immigrants, the disease often is not well understood and carries a huge stigma, in part because of religious and cultural views on homosexuality, and limited sex education.

Even when Latinas suspect their husbands or boyfriends of drug use or unfaithfulness, researchers say, they often don’t ask questions. Many defer to their mates or are dependent, emotionally or economically, on them.

“When you can’t imagine being on your own, you are more likely to justify or put up with or ignore behaviors,” said Britt Rios-Ellis, director of the Center for Latino Community Health at Cal State Long Beach.

Moreover, illegal immigrants are often reluctant to seek medical care.

“Some of the women fear that we are going to report them,” said Yolanda Salinas, a case manager with the Los Angeles-based AIDS Healthcare Foundation.

“We reassure them that this is all confidential.”

Like many illegal immigrants, Pena did whatever she could to remain invisible. But once she was found to have HIV, she couldn’t hide as easily.

She had to find free medical care from doctors she could trust. She needed a safe place to go for emotional support. And all the while, she had to keep working. She couldn’t afford to get sick.

Pena became more fearful than ever of being discovered by la migra and deported.

“If I go to my country,” she said, “I don’t have a chance to survive.... They don’t have the same kind of treatment. They don’t have the same kind of medication that we have here. They don’t know what to do.”

Pena looked at her boyfriend in the hospital bed, weak and thin.

Is that going to happen to me? she thought.

They fought that day. She insisted on knowing how he got HIV. He lashed back, accusing her of having an affair.

Finally, she recalled, “he gave it to me straight.”

He admitted to sleeping with other men for cash to support his addiction to crack cocaine, she said. He’d known of his illness for nearly a decade, she said, but kept it secret out of fear of losing her.

Pena said she had known about the drugs but was shocked by the prostitution. Still, she saw him through his bout with pneumonia.

Once he was feeling better, Pena told him he had to go.

Reached by The Times, Castillo, 36, admitted using injection drugs and having sex with other men but said he still isn’t convinced that he transmitted the virus to Pena.

Even if he did, Castillo said, he doesn’t feel sorry.

“It was just something that happened in life,” he said. “Why should I feel bad? Eventually we all have to die.”

Pena found free care at the AIDS Healthcare Foundation, where a doctor prescribed a drug cocktail. It has caused nightmares, nausea and drowsiness, but she doesn’t complain: Her last T-cell count was 522 -- well above the threshold of 200 used to diagnose AIDS.

She had both children tested for the virus -- and, to her relief, both were negative. “At least my kids are OK,” she said.

Pena told her children about her infection only last year. Christopher, 9, has mild autism. She doesn’t think he understands.

Jessica, 11, asked if Pena was going to die. No, Pena told her, not as long as I take my medicine.

“Even though she is still a kid, she has the mind of a grown-up,” Pena said.

Jessica watches over her mom.

“Sometimes she forgets, like if she has to take her medicine,” said Jessica, sitting on her bed, surrounded by stuffed animals. “I have to remind her.”

Pena has been told she can’t transmit the disease to her children just living side-by-side -- but just in case, they each have separate towels, brushes, shampoo and soap. They don’t drink out of the same cups or eat from the same plates.

Whenever her children get sick, Pena worries that it might be HIV. When Jessica missed two days of school last week because of stomach pains, Pena took her to get tested again. She is awaiting the results.

Every day, Pena walks down the block to pick them up from school. On a recent afternoon, she rushed there after finishing her new part-time job, weaving baskets for $10 an hour.

“I hope they didn’t walk home by themselves,” she said, hurrying to Christopher’s classroom.

Both were there. Pena sighed with relief.

Before leaving, she asked the teacher about the next field trip.

“I’d be glad to go,” Pena said.

She worries about what teachers and other parents will think if they find out she is HIV-positive. Will she be able to stay as involved as a school volunteer? Will her children’s friends still be able to come to the house?

“In our culture, this is like a taboo disease,” she said. “Even if you have it, you don’t talk about it.”

On a Thursday morning after the new year began, Pena and several other women crammed into a small meeting room in Hollywood.

Greeting one another in Spanish, they helped themselves to a potluck lunch of tortillas, beans, rice and fried chicken.

“Bienvenidos,” said Yolanda Salinas, the HIV-positive group leader. “I’m glad to see all of you.”

The support group is the only place Pena feels totally comfortable talking about her diagnosis. When she is here, she says, she feels at home, not so isolated.

“You don’t have to hide there, because everybody is the same,” Pena said. “Nobody is going to judge you.”

All of the women have HIV or AIDS. Most are Mexican or Central American immigrants, some without papers. Several are single mothers, many infected by husbands or live-in boyfriends.

The weekly meetings are part pep talk, part social club, part gripe session.

“Our men are macho,” said one woman, who, like the other participants, did not want her name published.

“They want their clothes ironed, their food prepared,” another woman said, “while they go with other women -- or men.”

“Because of that, we’re here,” a third woman said. “They accuse us of being prostitutes or having affairs.... They are the same ones who brought the illness into the house.”

The support group is sometimes sobering. Recently, one of the women died of complications from AIDS. She had a son the same age as Christopher.

But the group has also given Pena courage. On this day, she jumped into the discussion, saying that women shouldn’t put up with unfaithful -- or abusive -- men.

“You have to speak up,” she told the women. “You can’t stay quiet because of fear.”