AIDS Often Goes Undetected in Women : Disease: In early stages, the ailment produces different symptoms in female patients than doctors are used to seeing.
For seven years, Michelle was plagued by persistent but minor gynecological problems that no doctor was able to solve.
She was married, in college and pregnant with the first of what she hoped would be a large brood of children. She and her husband ordered a crib, decided on baby names and started planning Little League baseball for their unborn child.
Then doctors discovered that she has AIDS--a result, they determined, of 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 infection with the human immunodeficiency virus (HIV), which causes 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 keeps dreaming about having babies.
“I have had this for seven years and I just feel the doctors should have known,” said the 23-year-old San Diego 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 believed to be a man’s disease. In 1984, 23 new AIDS cases were reported among California women. Last year, that number had increased to 321--and state health officials believe under-diagnosis makes that figure artificially low.
In its early stages the illness produces different symptoms in women than doctors are used to looking for among AIDS patients. Physicians trying to determine who has AIDS generally rely on a list of opportunistic infections and diseases developed years ago by the federal Centers for Disease Control.
But that list was compiled when the disease afflicted mainly gay males and does not include any of the symptoms commonly seen in women. As a result, women tend to be diagnosed later than their male counterparts, health officials and patient advocates say.
That delay cuts them off from early treatment that could prolong their lives. In some cases, it also prevents them from getting government disability benefits that male patients receive.
“What ends up happening is most women are not diagnosed unless they are pretty sick. When they are diag nosed, it’s usually much later on in the disease and their survival tends be much shorter,” said Amy Somers, executive director of the AIDS Foundation in San Diego County.
The CDC last month announced a change in the definition that it says should help address that problem. The agency plans to broaden its definition to include HIV-infected individuals with severely damaged immune systems, as measured by the level of CD4--or T-4 helper cells--in their blood.
The CDC made the change to better monitor the epidemic. But agency officials said it also should benefit women.
“People will get reported slightly earlier and some will be reported who wouldn’t have been reported,” 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.”
But many AIDS activists, including such national groups as ACT-UP, that have lobbied long and hard for changes in the definition, say the CDC change will not help women because it still omits mention of symptoms affecting them. And unless doctors suspect that their female patients may be HIV-positive, they will not think to test for a lowered T-cell count, making the change irrelevant, they say.
“Women are still being left out,” said Mark Kuebel, spokesman for ACT-UP, a national group based in New York that has lobbied for a revised definition for more than two years. “The new definition is absolutely not adequate. We do not consider it a victory. . . .”
Women infected with HIV often suffer a range of recurring gynecological disorders, such as abnormal Pap smears, cervical cancer, chronic yeast infections, pelvic inflammatory disease, irregular or stopped periods and early menopause. Although these conditions also afflict many healthy women, infected women often have several of these conditions occurring again and again.
Some say these symptoms should send up red flags but are being disregarded by doctors as well as the patients themselves, many of whom simply do not see themselves as being at risk.
“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 with San Diego County’s 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.”
Many women find out they are infected only after giving birth to an infected baby or when a partner has become ill, said Juan Ledesma, director of the Los Angeles’ AIDS Healthcare Foundation Clinic, which runs a program for infected women.
“Doctors, as a general rule, are not sensitized to screening women patients for AIDS,” Ledesma said.
Dr. Raymond Scalettar, a member of the board of trustees of the American Medical Assn., said physicians do realize that the AIDS epidemic has spilled into the heterosexual community. But they are sometimes hindered when patients do not disclose complete sexual histories, he said.
“When a physician asks about sexual behavior, a patient has to be forthright--otherwise, diagnoses are going to be missed,” said Scalettar, a clinical professor of medicine at George Washington Medical Center in Washington. “Certainly in the Washington area and every large city, any physician with an active practice thinks about AIDS every day.”
Under the CDC’s new definition, effective in January, a person will be considered to have AIDS if he or she has fewer than 200 CD4 cells per cubic milliliter of blood. These cells enhance the production of disease-fighting antibodies. Healthy individuals have a count of about 800 to 1,000 CD4 cells.
Although the new definition might not help women get diagnosed earlier, it is expected to help them meet the criteria for getting benefits--such as Social Security and Medi-Cal--sooner.
Meanwhile, many women have found obtaining benefits under the current system quite daunting.
Tina, 33, is HIV-positive but has not yet developed full-blown AIDS. Until AIDS is diagnosed, she does not qualify for benefits. But Tina and local health experts said they know of other women who died without ever developing the symptoms traditionally classified as AIDS-related.
“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 annually.
Tina already battles a spate of illnesses, including chlamydia, herpes, recurrent yeast infections, and abnormal Pap smears. Fighting the persistent ailments has taken their toll--both physically and financially. Now, she is trying to figure out how to cope.
“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.
In the case of Michelle, the virus had ravaged her immune system by the time the disease was diagnosed. For seven years, she had abnormal Pap smears and usually had one or two vaginal yeast infections each month. For the last five years, she was stricken with outbreaks of herpes and genital warts. Last winter, she got thrush, an oral yeast infection commonly afflicting HIV-infected patients. Three months pregnant, she finally got an AIDS test. Not only did she have AIDS, but her immune system was depleted--her CD4 count was 200.
On Dec. 23, she aborted her pregnancy. Family members returned the baby and maternity clothing purchased as Christmas gifts. The one piece of good news, if there was any, was that her husband was not infected.
For two weeks, Michelle, who works as a sales clerk, could not lift herself off the living room couch.
But Michelle did rouse 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 that he was infected with HIV--an infection that her doctor believes was passed on to her.
“Before, AIDS was something the other guy was going to get-- certainly not me,” she said. “I couldn’t believe this was happening to me. I don’t think there’s a type of person this should happen to. . . .
“I’ve had problems since I was 16,” she added. “This should have been diagnosed. AIDS is a very unfair disease right now for women.”