AIDS & WOMEN : Those already diagnosed and those at risk find few services and agencies in the area that meet their special needs.

Lesley Wasserman’s first AIDS care package from the Necessities of Life program was missing a necessity.

“There was no Kotex or Tampax offered,” said Wasserman, 44, sitting in her Toluca Lake apartment. She had joined the program--sponsored by AIDS Project Los Angeles to provide toiletries and other needed products to people with AIDS--in 1988, soon after she was found to have the disease.

“It took almost a year to convince them this was a necessity for some of their clients,” she said. “Then I had to explain to a guy down there the difference between Kotex and Tampax.”

Wasserman laughed as she told the story, but she and other women have far more serious tales about how in the United States, the needs of women infected with HIV--the virus generally believed to cause AIDS--are often an afterthought.

The symptoms of AIDS are often different in women and not nearly as well-known, which can lead to tragically erroneous diagnoses. And support systems for infected woman who have children or are in difficult family situations are rare.

“The treatment of HIV in this country has largely been organized by gay men for gay men, because they were the ones who were infected for the most part,” said Karol Draper, a nurse and social worker who founded the only all-women AIDS/HIV support group in the San Fernando Valley.

“These men did an incredible job, especially considering they were not getting much support in the early years. But that established a treatment model for the disease almost entirely based on gay males. It left out some important women’s issues.”

Those issues are bound to become more important in coming years. At the recent International AIDS Conference in Amsterdam, Dr. Michael Merson of the World Health Organization reported that by the turn of the century women could account for the majority of new cases, globally, of HIV infection.

In the United States and other developed countries where the number of women with HIV infection and AIDS has lagged far behind men, the outlook for women is not as dire. For example, in the United States women have accounted for only about 11% of AIDS cases since 1981, when the disease was named and defined.

But there is ample cause for concern. “In developed countries we are seeing an increase in heterosexual transmission,” said Merson, speaking from WHO headquarters in Geneva, Switzerland. “Most of the cases in these countries still come from men infecting men through sex and through IV drug use, which is more likely to be male. But I suspect that the numbers of infection in women are increasing.”

If the expected increase becomes substantial, local medical and social service organizations will have to deal with issues far more critical than sanitary napkins.

“If a woman goes in to her doctor and says she is an IV drug user, it sends up red flags and the doctor will likely urge her to be tested,” said Barbara McGrue, a program coordinator at Tarzana Treatment Center. The center, which conducts state- and county-funded programs for drug abusers, this summer opened a Lancaster branch to provide services in the Antelope Valley exclusively for women. Their programs have incorporated HIV and AIDS education.

“But there are many symptoms that a lot of doctors don’t know about,” McGrue continued. “They can be treating repeated yeast infections for years and never realize that it’s a sign of HIV in women. We have to get the word out there.”

Marsha Marcoe, who oversees HIV testing at the Valley Community Clinic in North Hollywood, said some doctors have a stereotypical image of people infected with the virus. “One woman who had repeated yeast infections was told by her doctor, ‘You are too nice of a girl to have AIDS. You don’t need to be tested,’ ” Marcoe said. “But she was finally tested and it was positive.”

There are other symptoms of HIV exclusive to women--pelvic inflammatory disease, cervical cancer and the presence of the Human Papilloma Virus, which causes genital warts. A woman with one of these conditions is not necessarily HIV-infected, but they are indicators that a test for the virus might be prudent.

“One problem is that the Centers for Disease Control has not yet included, in the definition of AIDS, some of the symptoms that are gender-specific,” said Ann Copeland, who co-founded Women At Risk, an organization that sponsors an all-women HIV support group in Hermosa Beach and is planning on starting another in Santa Monica by the end of the year.

Copeland found out that she was infected with HIV in 1987 after a routine blood donation.

“I was lucky,” she said. “I found out, I went on AZT right away, and so far I have been symptom-free. But there are women out there who might die of AIDS without ever being tested because a doctor doesn’t know the symptoms.”

CDC officials announced last week that they are considering several revisions to the definition of AIDS. But representatives from several women’s groups protested that the proposed revisions do not go far enough in recognizing symptoms exclusive to women.

Wasserman, who said she was probably infected through sharing needles as an intravenous drug user, said that after her diagnosis the only support group she could find to join was all-male and mostly gay.

“They did not want to hear about my problems,” said Wasserman, who retains a hint of an accent from her home state of Texas. “They could not relate. But I finally told them, ‘If I have to sit here and hear all about how y’all have sex, which I don’t really care to hear, you’ll have to listen to me talk about my female problems.’ ”

Wasserman eventually grew close to many of the men in her group, which met in West Hollywood. The group eventually disbanded because so many of the men in it died.

She now works as a volunteer peer counselor at Valley Community Clinic. When a person tests positive for HIV at the clinic, he or she is offered the chance to speak to a counselor who is also infected. “Most of the women like to talk to another woman,” Wasserman said. “They want to ask about what will happen to them.”

Linda Luschei, who found out that she was infected in 1985, did not want to join a male group. “HIV came into my life at a time when I had just been widowed,” she said.

Luschei’s husband became ill soon after they were married. He entered the hospital, where it was discovered that he had been infected with HIV. He had already passed on the infection to her.

“At that time, it was such a male disease that it didn’t make sense to me. It seemed as probable as me getting prostate cancer.”

When her husband died, her doctor suggested that she find a support group. “I knew I could never have children. I knew that eventually I would be faced with issues about dating again. I wanted to talk to women about these things.”

In 1990, when the all-women’s Valley group formed, Luschei, now 34, was a charter member. “It gave me confidence, it made me realize I was not the only one,” she said. “I went from a person who was secret and hidden to someone who could speak out publicly to groups.”

The all-women’s groups might be rewarding, but not many HIV-infected women choose to attend. Even the biggest local all-women’s group, which meets in West Hollywood, usually has only about 10 at its meetings.

The Valley group’s twice-monthly meetings in a conference room at Sherman Oaks Hospital are usually attended by about half that number.

“Gay men were organized as a group and political even before AIDS hit,” said Draper. “It was far easier for them to organize.”

But the reason that all the women interviewed for this article mentioned, was the female role as caretaker for others.

“It is a real struggle to get them to come in,” said Marcoe. “A woman will take care of her husband, her children, her boyfriend or just about anyone else before she will take care of herself.”

McGrue agreed: “If you schedule an appointment for a woman and she does not have child care, she will not come. It’s that simple.”

Wasserman found this a difficult lesson to learn. Her boyfriend, Jim Lanigan, also has AIDS, and although she said he is not demanding, she found herself slipping into the caretaker role. “I was so busy taking care of him that I got sick myself,” said Wasserman, who has been in the hospital this year half a dozen times. “I tell women, ‘You have to learn to take care of yourself.’ ”

The situation is complicated by a variety of societal factors. “There are women who will not tell their husbands or boyfriends because they are afraid of a backlash,” Copeland said.

“There is a lot of macho ethnic attitudes in some communities, with the men not wanting the women to expose the ‘shame’ of the family. They don’t want them going to support groups. They don’t want the question raised of how the virus was introduced into the family.

“They think it’s a dirty secret that has to stay at home.”

Of the about 25 women who have attended the Valley support group since it began, all but two were white. “It is very difficult to reach women of color,” Draper said. “They are often in an economically difficult position and just getting child care is hard for them.”

As with all social and medical services, money is extremely tight. “Right now we give 700 to 900 HIV tests a month,” said Marcoe of Valley Community Clinic, whose testing program is state-funded. “We get enough funding to cover only 375 of those. We’re in the red, but we decided we can’t turn anyone away.”

The clinic has been seeking grants and private funding to make up the deficit, Marcoe said.

Care carries a huge price tag that will only get larger. But in an era when politicians are celebrating “family values,” Luschei believes that HIV care for women has a crucial place.

“The woman is often the backbone of the family, if not the only parent,” she said. “If we don’t take care of women, now, there will be orphans who will not be taken care of. There will be families torn apart. We have to get to them.”

In Lancaster, six women were gathered at Tarzana Treatment Center to take their first class in what the teacher called AIDS 101. “These are women here for chemical dependency treatment, but they could also be at high risk for HIV,” McGrue said.

The women were either referred to the program by county social service agencies or by the courts as part of a sentencing agreement. Some were mothers (child care is provided at the center) and some had spent time in jail.

One woman who comes to the center had already tested positive for HIV.

“We don’t urge them to get tested until they are absolutely ready,” said the teacher, Roger Calero. “If they are tested before they are emotionally ready and it turns out positive, it could upset their drug recovery and cause a relapse.”

Although the information that he was giving out was frank, Calero kept the class light, incorporating a number of games. The women at one point made a list of celebrities and then chose cards to determine a place they were meeting them and what they might be doing, in regards to sex. They then had to determine if the activity was high- or low-risk for HIV infection.

There was lots of giggling. One woman’s scenario had her involved in mutual masturbation with a famous singer in a kitchen. One of the students figured the locale, alone, made it high risk.

“In the kitchen, you don’t know what’s there,” she said.

“That has nothing to do with it,” called out another.

“That’s right,” said Calero, “there has to be an exchange of body fluids.”

More serious was an exercise in which the women worked through how they might respond to men who did not want to use condoms. “Women do not have direct control of the situation, they don’t have anything they can use on themselves as protection,” said Calero. “They have to negotiate with men and that can be very difficult for them.”

There was extremely frank talk about what could be done to persuade a man to use a condom. And the women seemed to be getting the message. During a break, several went outside to take a cigarette break.

“I’d try it on my fiance, but he is in jail right now,” said one. Another, who turned out to be the most successful in working with the role-playing games Calero conducted, was eager to get her boyfriend to use condoms. “When I get home, I’m going to tell my man we have to go to the store to pick something up,” she said, and the other women laughed.

“I’ll let you all know what happens tomorrow.”