Women With AIDS Face Another Kind of Battle : Health: Their illness is often diagnosed later than their male counterparts’ is. New guidelines don’t help, critics say.

For seven years, Michelle was plagued by persistent but minor gynecological problems that no doctor was able to solve.

At 23, Michelle was married, in college and pregnant with the first of what she hoped would be a brood of children. She and her husband ordered a crib, lined up Lamaze classes, decided on names and started planning Little League baseball for their unborn child.

Then doctors discovered that Michelle had AIDS. She had contracted it, they determined, during a relationship with an intravenous drug user seven years before.

Now Michelle is angry. Despite her frequent checkups and her diligent attempts to get medical help for maladies that just wouldn’t go away, not a single doctor thought to test her for AIDS. Had she known of her illness, she says, she never would have tried to have a child. Instead, she aborted her pregnancy last December and dreams about having babies.

“I have had this for seven years, and I just feel the doctors should have known,” said the Clairemont woman, who asked that her last name not be used because her husband’s colleagues do not know she has AIDS. “This is an epidemic, and only a handful of doctors seem to know what’s really going on.”

The nation is faced with a growing number of women afflicted with what was once considered a man’s disease. Because in its early stages the illness produces symptoms many doctors are unfamiliar with, it tends to be diagnosed later in women than in men, which cuts women off from early treatment that could prolong their health and their lives.

In some cases, it also prevents them from getting the benefits that male AIDS patients receive.

“People may still have a mind-set about the ‘type of person who’s HIV-infected,’ ” said Dr. Michele Ginsberg, chief of the epidemiology and AIDS division of the San Diego County Department of Health Services. “If you, the doctor, have a heterosexual woman, married for years, you might not consider AIDS--but she might not know her spouse is infected or that she is infected by a partner she hasn’t seen for five years.”

The federal Centers for Disease Control years ago developed a list of opportunistic infections and diseases that it used to determine when a person infected with HIV, the virus that causes AIDS, would be considered to have full-blown AIDS. But that list was compiled when the disease afflicted mainly gay males.

Last month, the CDC broadened its definition to reflect blood counts as well as general symptoms. But the definition still won’t help women unless their doctors think to test them for infection, critics complain.

Infected women often suffer a range of recurring gynecological disorders, such as abnormal Pap tests, cervical cancer, chronic yeast infections, pelvic inflammatory disease, irregular or no periods and early menopause. Although these conditions afflict many healthy women, infected women often have several of the conditions occurring again and again.

“What ends up happening is most women are not diagnosed unless they are pretty sick. When they are diagnosed, it’s usually much later on in the disease, and their survival tends to be much shorter,” said Amy Somers, executive director of the San Diego County AIDS Foundation, the county’s largest social service provider.

CDC officials say the purpose of their definition is to monitor the spread of the epidemic. The new definition, they say, will be a more accurate yardstick to gauge the epidemic, and probably will result in earlier reporting of some cases to the CDC.

“People will get reported slightly earlier, and some will be reported who wouldn’t have been reported. We think it would be better to be reported earlier when there might be some intervention,” said Dr. James Curran, director of the AIDS division at the CDC’s National Center for Infectious Diseases. “It’s not a gender-specific change. . . . But we think most women would be reported with the new definition.”

Under the new definition, individuals will be reported as having AIDS if they are infected with the human immunodeficiency virus that causes AIDS and if their CD4 cells, or T-4 helper cells, have been attacked and depleted by the virus. The definition, which goes into effect in January, calls for a count of less than 200 CD4 cells per cubic millimeter. Healthy individuals have a count of about 800 to 1,000 CD4 cells.

The previous CDC definition required the presence of specific opportunistic infections or malignant diseases, such as Kaposi’s sarcoma, and a pneumonia called pnemocystis carinii pneumonia, which reflect a weakened immune system. This definition had long come under attack by patient advocates who claimed that the list of symptoms was incomplete--a charge the CDC chose to remedy by adding the CD4 cell level rather than including more conditions.

“We had 24 conditions. Even if we added another 24, we’d still be missing people who are severely immune-depressed,” Curran said.

But patient advocates say the CDC should include women’s gynecological ailments because that would help alert doctors as to when they should test female patients for AIDS.

“The need is twofold: It would alert physicians that a woman might be infected, and it would help clinicians understand the natural progression of the disease in women, as we do in men,” said Renee Robinson, a registered nurse and licensed therapist who works at UC San Diego’s HIV Neurobehavioral Research Center and runs support groups for HIV-infected women.

Still others, however, say that changing the definition to include women’s symptoms would be premature because there have been few systematic studies of women with AIDS and not enough is known about how the disease affects them.

“We don’t know that women’s symptoms have the same implications for judging the state of the immune system,” said Dr. Alan McCutcheon, a professor of medicine at UCSD’s Medical School. “We don’t have enough information to know that recurrent yeast infections is the equivalent of PCP” pneumonia.

The CDC’s definition of AIDS has taken on even greater significance because it is also used as a criterion for obtaining benefits, such as Social Security and Medi-Cal--a fact that makes patient advocates push even harder to have women’s symptoms listed.

McCutcheon, however, believes that benefits should depend on the individual physician’s assessment of whether “the person is incapacitated psychologically or physically by his infection.”

“We shouldn’t be tying social benefits to a CD4 cell count,” said McCutcheon, who is also director of the California Collaborative Treatment Group, an organization that treats infected individuals at UCSD, Stanford University, UC Irvine and USC.

For female patients faced with the existing system, the prospect of obtaining benefits has been daunting. Tina, 33, has tested positive for HIV but has not yet developed the full-blown disease. Until AIDS is diagnosed, she does not qualify for benefits. Yet Tina and local health experts know of other women who died without ever developing the symptoms classified as AIDS.

“I, myself, put more than $60,000 into Social Security, and I question whether I’ll be able to ever collect,” said the San Diego data processing consultant who once earned $42,000 a year.

Tina already battles a spate of illnesses, including chlamydia, herpes, recurrent yeast infections, abnormal Pap tests and amenorrhea, the absence of menstruation. But she does not yet have AIDS, and she is trying to figure out how she will cope financially.

“One doesn’t figure when you’re 33 that you have to be planning out your retirement,” said Tina, who runs her own business from her home and asked that her last name not be used because clients are unaware of her condition.

“Until the CDC puts in gynecological manifestations, there is some discrimination. Because, without gynecological manifestations giving you a diagnosis of AIDS, you can be sick and not able to collect. I have my fears.”

In San Diego, 2,765 cases of AIDS have been diagnosed; of those, only 132 were reported among women. But the county health department’s Ginsberg and other local doctors believe that the actual number of cases among women may be higher.

“If we lived in New York City or parts of Florida, we’d be more acutely aware, because the heterosexual epidemic is more prevalent there,” said Dr. Shawn Harrity, co-director of UCSD’s maternal-child HIV clinic.

“The problem has been the perception that heterosexuals don’t really need to worry about this disease,” Harrity said. “The heterosexual spread of HIV is not thought of as being prevalent, and therefore it’s not looked for as much as it needs to be looked for.”

Some say that symptoms among female patients that should send up red flags are being disregarded by doctors as well as the patients themselves, who simply don’t see themselves as being at risk.

“There’s still a lot of denial--and it’s not just women, it’s health care providers. If women come in with PID (pelvic inflammatory disease) or recurrent yeast infections, physicians don’t always think to have them tested for HIV,” said Lois Gail, clinical director of the Center for Social Services’ AIDS Response Program, a counseling program.

In the case of Michelle, the virus had ravaged her immune system by the time it was diagnosed. For seven years, she had abnormal Pap smears and usually suffered one or two yeast infections a month. For the past five years, she had had outbreaks of herpes and genital warts. Last winter, she got thrush, an oral yeast infection common among HIV-infected patients. Three months pregnant, she finally had an AIDS test. Not only did she have AIDS, but her immune system was depleted: Her CD4 count was down to 200.

Michelle’s world crashed down around her when she learned the devastating news.

After she became pregnant, her husband brought home a pair of blue baby booties, hoping that their firstborn would be a boy. The young couple would put the booties on their fingers, walking them around the living room as they discussed which sports--football and softball--their son would play.

On Dec. 23, Michelle aborted her pregnancy. Tests showed that her husband was not infected. Her husband’s and her own family returned the baby and maternity clothes they had bought as Christmas gifts. The booties were given away.

For two weeks, Michelle, who works as a sales clerk, could not lift herself off the living room couch. Even today, she cries when she sees children playing in the park.

“I’m 23 years old, I haven’t done anything to deserve this,” she said. “It hurt. It still hurts. The AIDS part I am dealing with, I have it under control. I am not over the baby. I dream about having babies.”

But Michelle roused herself. She found and told her former boyfriends about her infection, advising them to get tested. She even accompanied one, who had no symptoms, to get his test results. He had been her boyfriend when she was 16 and, unknown to her, had used drugs intravenously, she said. She sat with him when he learned he was infected with the AIDS-causing virus--an infection her doctors believe he passed on to her.

“Before, AIDS was something the other guy was going to get--certainly not me,” she said. “It was a disease of gays, intravenous drug users, minorities and people who were poverty-stricken. I am none of those--I am a white, middle-class college student. I work, I go to church. I am a real model citizen.

“I couldn’t believe this was happening to me,” she said. “I don’t think there’s a type of person this should happen to. I just couldn’t believe it was me.”