AIDS-Stricken Women: Victims Try to Carry On

IRVINE —  Terri, 25, went to the doctor because she was running out of breath climbing the short flight of stairs to her apartment.

Half a dozen specialists and two months later, the diagnosis was shocking. Terri had AIDS.

Rosa Maria, 44, lost her husband to AIDS eight months ago. Now, the mother of two is HIV positive. Although she has not been diagnosed as having AIDS, she is infected with the virus and one day will develop symptoms of the disease.

Terri, a white college graduate, was raised in an affluent Orange County suburb. Rosa Maria, a native of El Salvador, lives in Los Angeles on $800 a month in Social Security benefits.

Neither fits the typical high-risk profile. Both are female. Neither has used intravenous drugs. And neither has had a blood transfusion.

But they are among a growing number of women nationwide who have contracted the AIDS virus from sex with an infected partner. Both women, whose names have been changed to protect their privacy, are among the silent victims of an epidemic, forgotten among the sheer numbers of gay men afflicted with the disease.

The AIDS Services Foundation recently announced plans to form a counseling group for women in Laguna Beach that would be the first of its kind in Orange County. Response, however, has been poor.

Unlike more than 100,000 men with AIDS, women make up a significantly smaller group scattered over a large geographical area. They are often too ill to leave their homes and have no transportation or child care. Moreover, many women who contracted AIDS through heterosexual contact do not want to attend group sessions with intravenous drug users.

“There’s not that many females out there” who have AIDS but don’t use intravenous drugs, Terri says. “It’s not like cancer or something. People are too afraid of it and their attitude is, ‘Why risk daily contact?’ ”

Although most women contract AIDS as a result of IV drug use, about 30% get the disease from sex with an AIDS carrier--a man who is an IV drug user, bisexual or member of another high-risk group. Thousands more become infected with the HIV virus, eventually developing full-blown AIDS.

They come from a cross-section of racial and economic groups, ranging from single women to wives infected by their husbands. Once diagnosed, many isolate themselves from friends and family, afraid of the stigma associated with the disease.

“These women are not prostitutes or IV drug users,” says Virginia Garzon, who runs the Milagros AIDS project, a support group for Latino AIDS sufferers in Los Angeles. “A lot of them are housewives leading quiet lives. They don’t want the neighbors to know. They don’t even want their mothers to know.”

They are women who suddenly find themselves victims of a terminal illness brought on by the infidelities of a husband or lover. Or, they have had more than one sexual partner and do not know how they contracted the virus because AIDS can take as long as 11 years to manifest itself.

“I think there are a lot of women out there who have it (virus), but it hasn’t been diagnosed,” says Irene Briggs, a licensed marriage and family counselor who runs a support group for mothers of AIDS victims in Orange County.

“Typically, a 25-year-old woman isn’t going to rush out and have an HIV test unless she has some reason to.”

Terri had just graduated from college when she came down with a type of pneumonia commonly associated with AIDS.

“It was a total blow that came out of nowhere,” she said. “It’s not like I’m a gay man who decided to get an AIDS test. One day I got sick and the next thing, boom, I’ve got a killer disease.”

Terri believes she got AIDS from a former boyfriend. However, none has admitted to being HIV positive.

Until two years ago, when she was diagnosed as having AIDS, Terri said she occasionally used condoms during sex but only as a means of birth control.

During sex, the HIV virus, present in the semen of an infected man, enters a woman’s system through cuts in the vagina, according to medical experts.

“Certain things like genital herpes and sores increase the chance of transmission to a woman,” says Dr. Sudhir Gupta, an AIDS researcher at UC Irvine. “But they are not necessary. In sexual activity, the woman always gets some sore--even microscopic tears--but that is enough, because the virus is so small.”

Yet many heterosexuals underestimate the risks of contracting the virus through sex.

“People in the straight community are so ignorant they think they are never going to get it (AIDS),” Terri says. “My doctor told me I probably got it before I even knew what it was.”

Terri has been more fortunate than most. Two years after being diagnosed, she has not suffered the severe, debilitating effects of the disease, such as dramatic weight loss and skin discoloration.

She can still work at her job as a supermarket checker. Her parents have steered her to the best medical treatment available. For the moment, pentamadine, a drug commonly used to treat AIDS patients, is keeping the pneumonia at bay. She stopped taking AZT several months ago because it was making her anemic.

Like others with AIDS, Terri saw her life change overnight. Plans for a career, marriage and children suddenly became pipe dreams.

“I think about it all day long--how can you not?” she says. “My body is changing. My skin is drier, my hair is coarser. My body is dying inside.”

A year after being diagnosed with AIDS, Terri met her current boyfriend. For months, she agonized over how to break the news to him.

“I didn’t tell him right off the bat, but I could tell he was falling in love, and I couldn’t keep leading him on,” she said. “The first thing he asked is what it would do to us. He’s behind me all the way.”

She has told two other close friends about her illness.

“It totally breaks my heart that others can’t know,” she says, “but I don’t want them to feel different and worry about me. I want things to be as normal as possible.”

Meanwhile, Terri is bound to her job in a grocery store because she needs the health insurance to pay her rising medical bills. She fears that if she changed jobs, she would have trouble getting insured because she has AIDS.

“That’s probably the worst thing,” she says. “I can’t live where I want to live, I can’t work where I want to work. I just feel I am so much more ambitious and have so much more to me. This isn’t me.”

Rosa Maria, a dark-haired woman who seems older than her 44 years, is relaxing at the offices of the Milagros AIDS project, handing toys to her young daughter.

Rosa Maria stays awake nights worrying what will become of her children when she dies. She has no family in the United States and has little contact with her relatives in El Salvador. They do not know that she has the AIDS virus.

“I don’t care about my life anymore,” she says, gently touching her child’s forehead. “I just care about what will happen to my children.”

She recently hired a lawyer to draft a document that will enable her son, 16, to raise her 2-year-old daughter.

“The lawyer’s making arrangements now so the baby won’t be given up for adoption,” Rosa Maria says. “I have some friends who will help him raise her so she won’t be taken away from him.”

She describes how for more than a year she watched her 37-year-old husband die from a disease that his doctors could not diagnose.

“I got mad and kept asking them why they couldn’t tell me what was wrong with him, because he was getting sicker and sicker,” she said. “By the time they found out he had AIDS, it was already too late.”

Last month, Rosa Maria applied for citizenship under the government amnesty program. She wanted to get a green card so she could find work to support herself and her two children.

“They wrote me back saying that I was a danger to the United States,” she said. “I cried and cried and said, ‘Why?’ because I know that I got the virus here.”

Before he died, Rosa Maria’s American-born husband told her he had contracted AIDS by having sex with prostitutes.

But she says she’s not bitter.

“I trust in God,” she says. “All I want is for my children to have a better life than I had.”

WOMEN WITH AIDS

Orange Category County Nationwide Adult females diagnosed with AIDS since 1981 53 10,369 Deaths 31 6,662 TRANSMISSION CATEGORIES Heterosexual contact 19 3,224 Transfusion 19 1,044 IV drug use 12 5,378 Unknown 3 693 MALE & FEMALE, ALL AGES Total AIDS cases since 1981 1,244 115,158 Total AIDS deaths since 1981 765 70,312

Sources: Orange County health department; Centers for Disease Control in Atlanta