Lisa Howard and I could be friends. We're both in our late 30s, are celebrating our 10th wedding anniversaries this summer, have kids of similar ages, drive Ford Explorers, and love long runs and good coffee.
During our college years, we both hung out in Southern California beach towns with surfer friends and worked as waitresses during the summer. But our lives took a different turn in the summer of 1983. Lisa traveled to St. Thomas in the Virgin Islands and had a brief romance with a man who worked at a local Chart House restaurant. She unwittingly returned home with something to remember him by: the AIDS virus.
And now, like me, she's part of a long-term study comparing women with HIV to those without. The results of the study, led by researchers at UCLA and Drew University medical centers, will be published later this month in the American Psychological Assn. Journal. Funded by the National Institute of Mental Health, the study, which began in 1994, is the first to examine the long-term psychosocial issues confronting HIV-positive women.
I learned of the study when I got a call from someone looking for healthy women to participate. The recruiter said I would be paired with a woman of similar demographics--white, married with children, educated, financially secure, except she'd be HIV positive. I agreed but secretly doubted they would ever find anyone like that.
They did, however, and several months later I joined a group of 500 women I was not to meet--about 60% had the HIV virus. Known simply as study participant No. 1089, I traveled to Drew Medical Center once a year for five years. Researchers took blood and urine samples, conducted memory and other tests, and asked me lots of questions, some so personal they made both me and the examiner blush.
After each visit, the same refrain ran through my mind: There's someone who comes to this place who's just like me, except . . . . Though the UCLA-Drew study continues, my part of it is over. But, as a writer, I couldn't let that be the end of the story. I had questions. I wanted to meet this woman whom I had wondered about for so many years.
She Resents Being Considered Sick
Lisa and I had breakfast recently at a coffee shop near her Westchester home. I looked hard into the face of this woman so much like me, anxious to learn all I could about her life, how she copes with her disease and how she is different from me. One of the first things I learned was how she resents the thought that she is different. While she knows the study is important, she rails against the idea that researchers are comparing the "sick" to the "healthy."
"I go into those tests and try extra hard," she says with the toughness that's brought her so far. "They want to prove that I'm less on top of things than the 'others,' and I want to prove them wrong." Already I admire her.
Gail Wyatt, a professor of psychiatry at UCLA Medical School and lead investigator for the study, says society has a stereotype of the woman with HIV as "poor, of color, homeless, uneducated, probably drug-addicted, single and with poor health care access." While acknowledging that the profile fits a lot of women with HIV-AIDS, many more than you'd expect are like Lisa Howard--white, married, educated, with medical insurance.
Though Lisa is not the norm, neither is she the exception. But she is exceptional in her willingness to share her story. She's beyond keeping her HIV status a secret and wants to educate others.
She Was Diagnosed at the Age of 22
Over sausage and eggs and coffee mocha, she told me her story, with matter-of-fact directness and the type of honesty usually found only in young children and very old men.
Lisa Howard grew up in an upscale neighborhood of Palos Verdes as the daughter of a prominent physician. Fifteen years ago, when AIDS made the cover of Time magazine, her father decided he wanted all four children tested for HIV.
"He knew his girls were a little wild," Lisa says. She doesn't say "and beautiful," but she is: tall, with a lean dancer's body and blond hair pinned casually up on her head; her yellow sundress shows off her green eyes and tan.
Her father gave her the bad news. "It took a long time to accept. I didn't know anyone who had AIDS. I didn't know how I got it. I'd never used IV drugs. I was 22 and doing what all my friends had been doing: going to school and playing."
Relying on his physician background, her father took an officious role, declaring that they would stay informed, get the best medical care and stick together.
Six years later, she learned from an acquaintance how she probably contracted the virus: Her St. Thomas sweetheart had died of AIDS.
Like Lisa, the majority (70%) of HIV-positive women in the study got the virus from a spouse or boyfriend.
"These are people in committed relationships who thought they didn't need to use condoms," Wyatt says. Only 10% of participants in the study said they contracted the virus through intravenous drug use. An additional 20% said that they got the disease from accidental needle sticks or blood transfusions, or that they didn't know.
"I've been watched pretty closely," she says. From the beginning, she has seen an HIV specialist every three months to monitor the level of the virus in her blood.
Lisa's health and survival don't surprise Wyatt. The UCLA-Drew study found that although white women tend to learn of their HIV status later than black or Latino women (because doctors don't offer white women the HIV test as often and the women don't ask for it), white women tend to get better medical care. Black or Latino women more often seek care in community clinics.
Met Her Husband on a Blind Date
A few years after Lisa learned she had the AIDS virus, she met David Howard on a blind date. He managed a bike shop, and she worked at a sporting goods store. On their second date, he rode his bike from Marina del Rey to Palos Verdes to see her--something that impressed both Lisa and her parents. Several dates later she told him she was infected with the AIDS virus and that "he could go now." He refused. "Whatever time we have together is worth it," Lisa recalls him saying.
But eventually he did talk to Lisa about the obvious issues and sought outside support to answer some lingering questions: Could they have children and would he be putting himself at risk? They married 18 months later.
"I never dreamed," Lisa says, "that I'd find anyone that this [disease] didn't bother. "David is a really incredible, caring person and lives for making my life as easy as it can be."
They have three daughters, ages 8, 6 and 3. All are HIV negative, as is David, a salesman for a printing company who also serves on the board of Tuesday's Child, an organization that serves women and children with HIV-AIDS. There might have been four kids but for one poorly informed doctor who, when Lisa got pregnant the first time, told her she'd be foolish to take the child to term, telling her it would cut her life expectancy in half. At the doctor's urging, Lisa had an abortion.
Babies Were Delivered in Bloodless Surgery
For her healthy children, she credits Craig Towers, a perinatologist at Long Beach Memorial Medical Center, who performs "bloodless deliveries." Through research, he and his colleagues found no evidence that HIV passes through the placenta. They surmised, therefore, that babies become infected by the mother's blood during the actual birth process. With his method, he delivers babies by Caesarean section, cauterizing the mother's blood vessels during the operation, before opening the amniotic sack, so the mother's blood doesn't infect the baby. While babies do carry their mother's antibodies for a while, their blood system is all their own.
The procedure, which is expensive, at about $8,000 per pregnancy, is clearly not for everyone.
Lisa and her husband, who diligently practice safe sex, used a home testing kit to determine when she was ovulating. Then, knowing her viral load was low and her husband's chances of contracting the virus theoretically low under the circumstances, they had unprotected sex "a total of probably four to six times," Lisa says. The result was three healthy pregnancies and three babies delivered by C-section.
"No one knows the exact risk," says Towers, who specializes in high-risk pregnancies. "But in heterosexually transmitted AIDS, women are at higher risk of getting AIDS from a man than a man is from a woman. Though men have certainly gotten AIDS from women, David's chances probably were very low."
Towers adds that when HIV-positive women take medication to keep their viral loads low, get good prenatal care and deliver by prearranged C-section, the risk of transmitting the AIDS virus to the fetus is less than 3%.
And while some people might take issue with the Howards' decision to have children, the ethical dilemma they faced was one that will become increasingly common in an age of sophisticated genetic testing, when parents can learn before pregnancy that they carry genes that put them at risk for having children with debilitating or deadly diseases.
Lisa says she sometimes wonders whether she made a mistake having children whom she may not see reach adulthood. But she usually dismisses such thoughts: "They're happy, beautiful, have a wonderful father and our life is so rich. AIDS is not a big part of our lives."
The UCLA-Drew study found that HIV-positive women who have children remain healthier longer than those without children. The presence of children "is a significant indicator of survival for HIV-positive women," Wyatt says. "They're an anchor point. Women often put their family's health ahead of their own, but when women with children learn they have HIV, they're more motivated to take care of themselves."
She Walks Seven Miles a Day to Keep Fit
To see this woman who looks like a walking fitness center ad, you'd never suspect her body contained a deadly virus. She keeps her disease in check with a daily regimen of potent anti-AIDS medications.
She walks seven miles a day and recently finished a 570-mile bike ride from San Francisco to Century City to benefit AIDS awareness. While her outlook is positive and her condition excellent, she realizes that the odds are not in her favor.
She hasn't heard of anyone living past 18 years with HIV and that concerns her. She and a friend with HIV started an HIV support group eight years ago with seven people. Today, Lisa and the friend are the only survivors.
She tries not to dwell on it and focus on the present and her children. "I fully enjoy their lives. I don't miss a dance recital. Others take for granted something I cherish."
And in case her health does turn for the worse, every year on her daughters' birthdays she writes each a letter, which she saves but doesn't given them. It begins: "In case mommy's not here next year . . . ."
Still, she dreams of making it to her youngest daughter's wedding. She pins her hopes on science, and the "AIDS cocktail" that's so far working. "When my body becomes resistant to this cocktail, doctors have three others available. If I can get two more years from this one, and three to four years from the others, that's nearly 15 years, and by then they'll have something. That keeps me having hope."