Editor’s note: This is an article from the Spring 1997 issue of UCLA Magazine.
Even as the AIDS virus rages inside her, Brenda Gonzalez swells with new life and the promise of motherhood.
Eight months along, she rubs her large belly in the instinctive way pregnant women do, cooing to the tiny being curled inside. The day before, her mother, Alma, who lives in the apartment next door, threw her a baby shower. A sea of orange, yellow, red and blue balloons float along the walls. A car seat, a layette and other baby gifts fill a corner. “I’m sorry about the mess,” she apologizes. The studio, little bigger than some people’s master bedrooms, is immaculate.
Dressed in a red sweater, black leggings, her long dark hair neatly curled, Brenda sits at her kitchen table on this gray morning, sipping herbal tea. A bright, articulate woman, she openly shares her thoughts on the disease that has invaded her life.
Brenda got infected with HIV sometime last summer, from a man she was seeing in her native Guatemala. They were good friends, working together at a large American hotel in Guatemala City. He was married, with two small children. One day he showed up at her house unannounced and they had sex. She vowed she wouldn’t sleep with him again. She did.
Brenda didn’t use any birth control, though she thought of using condoms. She’s not sure why; perhaps that would have meant admitting intent. She never thought about the HIV virus.
In July, she discovered she was pregnant. In August, she decided to take the HIV test. She asked her partner if he wanted to take it, too, but he declined. He was healthy, he said. Her test came out negative. In December, Brenda returned alone to Los Angeles, where she had lived when in high school, and moved in with her mother and stepfather. “I had to be realistic,” she says. “I wanted my baby to have a good education.”
On December 19, three months before her due date, Brenda went to her OB-GYN clinic in West L.A. for a routine prenatal checkup. The doctor told her all her tests were fine. Except one. He held out a slip of paper. “This is the HIV test,” he said. Brenda put her hands over her eyes and cried out. I’m going to die, she thought.
The doctor was kind, reassuring. He said he couldn’t predict how long she would live but that for now she was quite healthy; that the chances of her baby being infected were small. He explained that because she was HIV-positive, he couldn’t deliver the baby. He would refer her to UCLA, where there is a clinic devoted to pregnant women with HIV and their children.
Brenda called her mother. “I need you to come,” she told her. Alma was at work. “I can’t leave,” she said. “Tell me what it is.” Brenda said, “I just came back from the clinic and I’ve got HIV.” Brenda started crying; her mother cried, too.
Fifteen years into the AIDS epidemic, the face of the disease is turning feminine. Despite a decline in AIDS-related deaths for the first time in the United States last year, despite a slowing in the number of gay men contracting HIV, despite what researchers and activists alike agree has been a watershed year in AIDS treatment, a sobering trend has emerged. More women are getting HIV, the virus that causes AIDS, than ever before.
As of December 1996, more than 85,000 of the 581,429 people reported with AIDS were women. Two years earlier, the figure was a little over 58,000. In 1996, women accounted for 20 percent of newly reported AIDS cases, more than double a decade earlier.
For women between the ages of 25 and 44, AIDS and other HIV-related illnesses are now the fourth leading cause of death. For African American women, AIDS is the number one killer. “When you look at the population of women infected with HIV,” says Ann Johiro, a nurse practitioner with UCLA’s Care Clinic, “the percentages of minority women versus nonminority women are incredible.” Indeed, though Blacks and Hispanics represent only 21 percent of all American women, in 1995, a staggering 76 percent of women with AIDS were of those two groups.
Women on the East Coast are becoming infected largely through IV-drug use; women on the West Coast are getting the disease primarily through sexual relations with infected men. Heterosexual contact is, in fact, the fastest-rising form of transmission for women everywhere.
At UCLA’s Care Clinic, a pleasant area in the medical center where people with HIV and AIDS are treated, the patient population mirrors the national statistics. “The early cases were older women whose husbands had blood transfusions and contracted the virus that way,” says Dr. Ronald T. Mitsuyasu, director of the UCLA Center for Clinical AIDS Research and Education and associate director for clinical programs of the UCLA AIDS Institute. “We’re now seeing younger women who’ve contracted the virus sexually without the tainted blood connection.” Increasingly, the women are married and don’t know they’re infected until they or someone in their family develops symptoms of AIDS.
Johiro has a number of such patients. One, the mother of a 5-year-old, probably got the virus from her husband but isn’t sure. Another, an African American woman, is certain she was infected by her husband. He died of AIDS; her two children have tested negative. Two former patients, both Hispanic women in their 20s, have died. Another African American woman in her 40s with two grown children learned she had the virus after donating blood, but didn’t obtain medical care for another year. Her husband passed away after suffering from some form of pneumonia. (“She has no idea what he died of,” says Johiro.) Many of the Latinas, some in their early 20s, others as young as 15, report being infected by men who are gang members or abuse drugs or have been in prison, where risky sex is prevalent.
There are several reasons women of color are succumbing to the virus in such high numbers. A major factor is the traditional nature of gender roles in some ethnic communities, where women are expected to stay home and raise the children or, even if employed, do not earn a living wage. “Financial dependence limits the options that women have to say no to certain partners or to certain high-risk behaviors,” notes Dr. Gail E. Wyatt, a professor of psychiatry and behavioral sciences and associate director of behavioral science education and prevention for the UCLA AIDS Institute.
Another powerful influence is the double standard that says women are supposed to be ignorant about sex and condemns them as “loose” or immoral if they take measures to protect themselves against pregnancy or sexually transmitted diseases. Many of the Latinas getting infected now are married and monogamous. They have no idea the men they love and trust have endangered their lives. The notion of the “naive virgin” is a killer.
“Our research on women who are HIV-negative has demonstrated there are a lot of ethnic and cultural issues around sexuality,” says Wyatt. “There’s a huge lack of information about how HIV can be transmitted. The perception of susceptibility still has not penetrated to the inner core of these communities. Particularly uninformed are married individuals or people in relationships who may not know their partner or spouse is an IV-drug user or gay or bisexual.”
Those on the front lines of the epidemic are quick to point out, however, that the virus is attacking women of all backgrounds: college students, professionals, the wealthy. And because their numbers have been relatively small, women with HIV have largely been ignored by the research community. Until a few years ago, they were rarely invited to participate in clinical trials, the method by which critical new AIDS therapies are tested and developed.
The consequences are evident: Many women are appallingly uninformed about AIDS and their risk of getting it. “Unfortunately,” says Johiro, “people still think of this as a gay disease.”
The diagnosis has altered Brenda’s life in a way that is impossible to name. “This is new, something you don’t expect,” says her stepfather, Mario, one morning over the din of a rerun of The Partridge Family on TV in the tidy apartment he shares with Brenda’s mother. “The good Lord put us here for a test, and we’re going through it.” A quiet man of 61 who works as a pressman, he wonders why the HIV test isn’t mandatory. “People don’t check it out,” he says. “Why don’t they just do it?”
Alma, a gentle woman in her late 40s, worries about her daughter’s condition. There are so many unknowns. Brenda’s health, the baby’s. How will they pay for Brenda’s medicine? Unless there’s a cure, a miracle, she will have to take drugs the rest of her life.
In the household where she works as a nanny, Alma was crying so much that the lady of the house begged Alma to tell her what was wrong. At first she said Brenda had cancer. But she couldn’t bear the deception. “What if I got the virus and Joshua got sick?” Alma asks, referring to the toddler she cares for. The woman hugged Alma, consoled her. She had friends with HIV, she said.
Brenda views herself as a classic example of the least likely person to be an AIDS statistic. “If it can happen to me, it can happen to anybody,” she says. “That’s why I’m so open about it.”
She refuses to give in to anger at the man who infected her. “He’s not a bad person,” she says. “He didn’t do it on purpose. He doesn’t want to see me die of AIDS.” Like many women, she blames herself. “It was up to me to take care of myself.”
The man is now sick, with symptoms of Pneumocystis carinii pneumonia. He is supposed to arrive in town any day, but the days pass and he doesn’t show. Brenda has faith he will turn up; they talk a few times a week. He’s excited about the baby. But Brenda has not told him she has HIV. “I don’t want to tell him over the phone because I’m afraid of his reaction. He might go into a depression. And telling him — it’s not just him, it’s his wife, his two kids. In that country there’s no help. They let you die.”
Brenda and other expectant mothers like her are the beneficiaries of a recent, major advance in the field of HIV. Researchers have found that treating mothers during pregnancy and delivery with AZT, and treating their infants with AZT after they are born, reduces the transmission rate dramatically, from 25 to less than 8 percent. Dr. Yvonne Bryson, codirector of UCLA’s Maternal-Child Immunology Clinic and a leader in the field of pediatric AIDS, and her colleagues, were among the first to demonstrate this remarkable effect. “It’s made a tremendous difference throughout the country,” says Dr. Paul Krogstad, a leading AIDS pediatrician at UCLA.
To attack the virus in her own body and protect the life of her unborn child, Brenda is taking AZT and 3TC, a frequently prescribed drug combination for those in the early stages of HIV.
She will remain on the drugs unless side effects develop or she develops symptoms of AIDS or they no longer work. Since January, her T-cells have shot up from 300 to 800, and the virus in her blood has dropped from 12,000 to less than 200, both encouraging signs.
Still, she will be unable to breastfeed her baby because it increases the risk of transmission by as much as 50 percent. At age 25, Brenda must make many tough decisions at once. She must decide, for instance, whether she should undergo a tubal ligation after the baby’s birth. The practical side of her pushes the surgery, the maternal side pulls against. “You find out you’re sick, you feel you have less chances than everybody else,” she says. “Here, I’m already thinking I can’t have any more babies because I’m going to die.”
Most of the time her spirits are good. “She has a wonderful attitude,” says Deborah Wafer, Brenda’s nurse practitioner, an outgoing woman in her 40s who works at UCLA’s Maternal-Child Clinic. The clinic, one of the few places in Southern California devoted to the medical and social-service needs of HIV-positive women and their children, is where Brenda and her baby will receive care.
As she waits for the baby, she tries to think there’s a reason for what happened. “I have a goal now,” she explains. “To take care of me, to take care of my baby, to find out as much as I can about the sickness I have and to teach people about it. Because I’m not ashamed.”
Gail Wyatt is spearheading a landmark study by UCLA AIDS researchers that will provide long-needed data on how women are grappling with AIDS. Funded last year with a $4-million National Institute of Mental Health grant, the Women and Family Project will follow the path of HIV in both minority and nonminority women for two years. All told, the study will examine the lives of 200 HIV-positive and 200 HIV-negative women. To date, more than 160 women, from throughout Los Angeles, ranging in age from 18 to 62, have been enrolled.
Researchers hope to learn everything from how women are getting infected to which women are being given medications. Significantly, the protocol will also offer the first solid information on how women are benefitting from the remarkable new drugs called protease inhibitors. Shown to reduce the virus in the bloodstream to undetectable levels, these drugs have profound implications for long-term survival with AIDS.
Some of those on the three-drug protease “cocktail” have experienced near-miraculous recoveries. But the drugs have not worked for everyone, and they are not a cure. Aside from their often intolerable side effects, they are expensive and tremendously complicated to take. Some protease regimens require 20 pills a day — some to be taken with food, some without — and can cost as much as $20,000 a year, making them an option for only the best-insured patients. Moreover, unless the drugs are taken properly, the virus can quickly become resistant to them, setting the stage for reproduction of new mutant strains of HIV.
Through the study, Wyatt and her colleagues also hope to cultivate a better understanding of the social aspects of the disease: how women with HIV negotiate dating or being in a committed relationship. How their partners adjust. What women tell their children. Do they even reveal that they’re sick?
Already, AIDS workers have learned that women with HIV are more motivated to take care of their health if they can go to a facility that also treats their children. But while the medical community makes progress in improving care for women with HIV, the social stigma associated with the disease is unmitigated. Women today are where gay men were at the beginning of the epidemic 15 years ago. Isolated, in hiding, alone.
“I had the baby,” Brenda announces on my voicemail.
I call her back. She sounds sleepy and distant and happy. Like a new mom.
The baby, born February 28 at 7:02 p.m., is a girl. She weighs 7 pounds and is 20 inches long. She is named Alexandra Carlotta, for Brenda’s maternal grandmother.
“I had her normal. It hurt,” Brenda laughs. “But it was wonderful because I had two really good nurses. They were with me the whole time. It was about 5:30 when I started pushing. They had to use forceps, and then she came out in two pushes. I remember being relieved, thinking, ‘Oh, she’s fine.’ It was good to be in the hospital for the weekend. My mom was with me.
“The first thing I noticed when I looked at her was her big cheeks,” says Brenda of her baby. “She looks kind of like me. She wakes up at 3 for her bottle, then she doesn’t go back to sleep.”
Alexandra must take AZT. “She likes it,” says Brenda. “They said not all babies do. I have to give it to her every six hours. Every time I give her the medicine I say God’s name.” It will be four months before a series of blood tests determine whether Brenda’s baby has been spared.
At 11 days old, Alexandra makes her first trip to the clinic. Tiny and wrinkled and red, she has a tuft of black hair. “She looks just like you,” a nurse practitioner tells Brenda admiringly. Alexandra, wrapped in layers of white cotton sprinkled with tiny pastel clouds and stars, dozes peacefully. Brenda, dressed in blue jeans and a dark plaid shirt, smiles.
This afternoon, Alexandra will be weighed and measured and inspected like any other newborn on her first official doctor visit. But she will also have blood drawn to test for the virus.
As Brenda watches, a clinical assistant straps a cuff around the baby’s ankle and takes her blood pressure. He removes her little white cap and winds a tape measure around her tiny head.
“I’m so nervous,” Brenda says.
The assistant charts Alex’s length; a nurse appears and takes over. “I need you to undo everything,” she says to Brenda.
Brenda starts to pull off Alexandra’s jacket. The infant, startled, makes a little aaaah sound, trying to decide if she wants to cry. Her legs draw up into a ball.
Once the baby is undressed, the nurse carries her over to the scale. Alexandra is awake now, waving her skinny arms purposelessly in the air. The exam over, Brenda dresses Alexandra and carries her into another room.
A few minutes later, Deborah Wafer bounces into the room. The nurse practitioner heads right for the baby and scoops her up. “Hi there!” she says in a loud, cheerful voice.
She turns to Brenda. “She’s a beautiful baby. How are you feeling?”
“I feel great,” Brenda says. “I’ve been walking since the third day.”
“Did you get the tubal ligation?”
“Yeah.”
“It must have been a hard decision.”
For the next 20 minutes, Wafer and Brenda talk over many things. Brenda’s medications and how she’s doing on them. Her sadness over not being able to breastfeed. The hormonal changes she’s going through. The baby’s vaccination schedule and the tests for HIV that Alexandra will have in the coming weeks.
As of this writing, Brenda’s baby has tested negative four times. Two more tests will determine her status conclusively; she has an excellent chance of being OK.
Brenda’s journey with the virus is just beginning. Because she feels a responsibility to educate other women about the disease, she is participating in a training program for counselors at Women’s Link, a nonprofit agency in Culver City that serves women with AIDS.
She is grateful for Wafer and the other AIDS practitioners she’s met who’ve come to occupy such a large presence in her life. “You feel all these people are working for you and other people like you,” Brenda says. “To them, it’s like a fight, a war. It’s not that they feel sorry for you. They feel you have the right to live.”
