Focus on Women : Medicine: L.A. clinic plays a pioneering role in treating the special medical problems of HIV-positive females.
The lab tests were in and the results were troubling. Inside a small office at the T.H.E. Clinic for Women in Southwest Los Angeles, the physician used a diagram of the female reproductive organ to explain Tanya Shaw’s latest problem.
“In most women who have what you have, it takes five to 10 years to develop into cancer,” Dr. Groesbeck Parham told the 25-year-old woman. Her two daughters, ages 7 and 2, waited in the nearby playroom.
But Tanya Shaw isn’t like most women. AIDS has already weakened her immune system and the pre-cancerous condition could evolve more rapidly, the doctor told her. Parham, a cancer specialist, recommended an electrosurgical excision to remove the abnormal tissue from her cervix.
In another medical setting, health authorities say, the condition may not have been diagnosed. But the T.H.E. Clinic--the acronym stands for “To Help Everyone”--has been enlisted to play a pioneering role in improving health care for women infected with human immunodeficiency virus (HIV), the cause of AIDS.
Four months after the clinic started its novel HIV gynecology program, the client list exceeds 100. Health authorities say the program is needed because as HIV spreads among the heterosexual mainstream, the incidence of AIDS has grown faster in women of childbearing age than among any other group.
The Centers for Disease Control report that the number of cases nationwide among females older than 13 increased from 3,639 at the start of 1990 to 5,730 in February, 1992--an increase of 57%. As of Jan. 31, 496 women in Los Angeles County were reported to have AIDS, with another 15% to 40% estimated unreported.
According to CDC estimates, more than 1 million people in the United States are infected with HIV. Extrapolating from these figures, local health authorities estimate the number of women infected in the Los Angeles area is probably in the thousands. Many, perhaps most, are unaware of their condition.
The women who visit the HIV program at T.H.E. Clinic at least learn more about their condition--though the knowledge is never easy to deal with.
Tanya Shaw says her daughters, who are in good health, help keep her smiling. She has become known in some circles for her crusade to establish a program that would enable parents who have AIDS select their children’s future adoptive parents. “It’s what keeps me going,” she says.
Others find it hard to concentrate on anything but their own fragile health.
Maria, as one Latina preferred to be called, somberly described a state of constant depression. The 42-year-old Long Beach women, a mother of six children ages 4 to 22, discovered she had HIV in April, 1991. She pleaded with her husband to explain how he became infected: “He said, ‘Please don’t ask me. I don’t want to talk about it. . . .’ ” He never told her.
“I saw him die, and the way they die is terrible and I’m so scared the same thing is going to happen to me,” she said. “It’s hard to explain . . . It’s like my mind and body, it’s in another place. It’s like I feel I don’t belong here.”
Arleen, a young woman from South-Central Los Angeles, still seemed dazed by the news. Arleen said she had such little sexual experience--usually with a condom--that she believed she had been infected by a needle prick while she worked as a dialysis technician.
“Right now, I’m in denial. I feel embarrassed. And angry,” she said.
Studies have shown that women who have been infected with HIV tend to be diagnosed later and die sooner than men with HIV. Despite the increasing risk of transmission through heterosexual intercourse, many women and their physicians still aren’t sufficiently aware of the potential for exposure to HIV, health authorities say.
Misdiagnosis is also common, experts say. Even doctors who specialize in HIV care are often at a loss in addressing the virus’s implications in women.
“This is on the cutting edge of the medical frontier, trying to create the field of knowledge for women with HIV, “ said Sylvia Drew Ivie, the clinic’s executive director. “Because it isn’t out there now. It just doesn’t exist.”
Others make similar observations.
“There’s not a lot of information gathered and published on gynecological problems in HIV-infected women,” said Parham, who is director of gynecological oncology at the Charles Drew University of Medicine and Science.
The program represents the first major accomplishment of the Women’s Caucus of the AIDS Regional Board, a group established last year to lobby for the use of AIDS funds, including federal money provided by the Ryan White CARE Act. Last year, the caucus secured $138,000 to launch the program with a gynecologist and a nurse practitioner, both working part time.
The T.H.E. Clinic, on Martin Luther King Jr. Boulevard in the Crenshaw district, was chosen to set up the program in part because of “its wonderful, cohesive staff, which is very important,” said Joyce Canham, a past chairwoman of the Women’s Caucus. In addition, the clinic has provided HIV testing, education and counseling since 1988, she added.
Another factor in the clinic’s choice was that it provides services in 10 languages. “As horrible as it is to be told you’re HIV-positive, it’s more horrible to be told by someone who doesn’t speak your language,” Ivie said.
The clinic’s location in a predominantly black community was also an important factor. Surveys had found that blacks are disproportionately at risk for HIV, health authorities say.
Parham said the clinic is the antithesis of large public and private institutions that intimidate patients by their size and bureaucracy. “People who run larger institutions can learn something from the T.H.E. model,” he said.
The search for doctors to work in the program says much about the state of care for women with HIV. Among 1,800 registered gynecologists in Los Angeles County, only three volunteers came forward--and one was Dr. William Merritt, who has been the T.H.E. Clinic’s medical director since it was established in 1973.
“Primarily, it comes down to what you think you were put on this planet to do,” Parham said. “I feel my mission is to use my skills to provide care to the dispossessed. And I feel uncomfortable when I’m not doing that.”
Parham suggests there are many reasons he answered T.H.E.’s call and other doctors didn’t. Volunteering to work Saturdays in a clinic provides modest compensation; taking on indigent patients creates a financial drain on a medical practice. And as a gynecologist who is also a cancer specialist, Parham added, he is more accustomed to working with patients who are considered terminally ill.
“A lot of physicians don’t want to deal with young patients with a high mortality rate. It’s not fun,” he said. But, as a cancer specialist, “you get kind of weather-beaten after a while.”
Women tend to be less aware of the risk of HIV. In many cases, they are infected by men they did not realize to be bisexual or IV drug users. Moreover, women with HIV are more likely to be black or Latina, have modest incomes and no health insurance.
For all of these reasons, women often miss out on the advantages of early treatment, and when they do receive care, it is often of lower quality than that available to men, Parham said.
Ivie tells of one woman, among the first to visit the new program, who was being treated for AIDS at a well-regarded clinic. She was receiving AZT to bolster her immune system, Ivie said, but doctors had overlooked the spread of genital warts. Nurses and doctors at T.H.E. were stunned when they learned that the woman had been attempting to treat the condition herself--and was unknowingly spreading the infection.
“Nobody gives the examination unless they’re trained to do that,” Ivie said of the lapse in care at the other facility. “It’s just not part of the routine examination.”
Women with HIV are highly susceptible to sexually transmitted diseases and chronic yeast infections, doctors say, and the conditions are harder to treat. Pap smears--performed to detect signs of cervical cancer--are more likely to be abnormal. Among the puzzling implications of HIV in women is the discovery that Pap smears may produce “false negative” results that fail to signal troubling symptoms, Ivie said.
That is why exams using a tool called a colposcope--a low-power microscope used to view the cervix--are a key feature of the T.H.E. program. Every woman entering the HIV program receives a colposcopy, considered far more accurate than a pap smear in detecting signs of cancer.
That’s how Tanya Shaw learned about her condition. After discussing her condition with Parham, she tried to maintain an upbeat attitude, describing the proposed operation as “a little minor major surgery. Nothing big.”
As it turned out, a few days later Shaw’s T-cell count--the barometer of health in an AIDS patient--dipped so low that she had to be hospitalized and surgery had to be canceled. Her condition has since improved.
