Shocked by Spread of AIDS, Women Fight Back

In a beautiful Alvarado Estates home, eight women spent a quiet evening last week sipping wine and munching dinner, chatting animatedly about the latest information in their newspapers and magazines.

It was an unremarkable suburban gathering--except for the subject of their conversation. Within minutes, the talk turned from pleasantries to very frank discussion of death ratios, viral infections and sexual practices--and to the prospects for a very bleak future in a world debilitated by AIDS.

In the tradition of Mothers Against Drunk Driving and Mothers Embracing Nuclear Disarmament, this small group of friends--who six months ago gave the AIDS epidemic little thought--is hoping to become the newest local force against a disease they believe they can no longer ignore.

“We decided that the men weren’t doing a very good job--either the heterosexuals or the homosexuals--to stop this epidemic, and the women were going to have to come to the rescue,” said Dr. Theresa Crenshaw, head of the group and and resident expert on the subject.

While their days as a major force against the spread of AIDS appear to be far ahead of them, the women’s meeting also provided a glimpse of the fear and shock striking comfortable, middle-class Americans, who until very recently were secure in the fantasy that Acquired Immune Deficiency Syndrome is a disease that strikes only homosexual men and intravenous drug-users.

In November, Crenshaw began to bring up the topic of AIDS at the monthly gatherings of the 14 close friends, and their informal social sessions took on new purpose. Only then did the women begin to realize that AIDS is a disease that could affect their families--and particularly their children.

“Before November, I never dreamed it was anything but a homosexual disease,” said Edie Greenberg, a homemaker who has unmarried children ages 22, 26 and 30. “I never read anything about it. . . . I blocked it out.”

Shocked by what they heard, the women began devoting their monthly gatherings to organizing a group dedicated to helping prevent the spread of AIDS through public education.

“A lot of the interest groups that have formed are a lot of the people that have already been affected by AIDS,” said Teddie Pincus, whose home was the site of Thursday’s meeting. “We feel it’s a much broader spectrum. . . . It’s not their problem, it’s our problem.”

They are an unlikely group for the task. They are not activists. They are comfortable, successful members of the establishment: An insurance broker, an accountant, a fund-raiser, a volunteer for philanthropic causes, several homemakers. They are led by a physician, Crenshaw, who said she has abandoned her practice as a sex therapist in an attempt to warn a complacent world about a disease she believes could ultimately kill 25% of the human race.

What they share is a sense of alarm that most of their peers are hiding from the truth about AIDS, content in their ignorance. And, like the founders of MEND and MADD, they believe that women will bring to the prevention movement some attributes that are lacking now.

“Women have several very important qualities that are necessary to fight this,” Pincus said. “They are protective. When we are in trouble, the first one that comes to the aid of the family or the individual is the woman. This is a disease that threatens everything that she stands for, and that is protection of the family.”

As yet, the fledgling group has no name and little cohesive strategy. Mothers Against AIDS and Women Against AIDS were possible titles floated at Thursday’s organizing session.

For the past six months, their efforts have largely been “AIDS awareness meetings,” attempts to acquaint friends and colleagues with Crenshaw’s dire predictions of the scope of the AIDS epidemic. Through contacts in the group, Crenshaw has addressed or is scheduled to address Charter 100 (a women’s networking group), Inside Edge (a La Jolla business people’s group), the Sharp Children’s Hospital Women’s Auxiliary, the National Assn. of Health Underwriters and groups of friends at various members’ homes.

Their main objective now is to organize a mass demonstration sometime around Mother’s Day during which hundreds of women and their families will take AIDS tests at local testing centers. The effort is designed to “de-stigmatize” AIDS tests, Pincus said.

Crenshaw, who said she and her 15-year-old son already have taken the tests, has come up with slogans such as “It’s Positive to be Negative” and “We’re Pro-Testing.”

Thursday, they spent part of the evening firing themselves up for the effort with a staggering list of statistics and forecasts provided by Crenshaw and others. Crenshaw, who acknowledges that she is considered an alarmist even as she is gaining access to the White House, Congress and top high-level officials in the U.S. Department of Health and Human Services, predicts that, without drastic behavior changes or a medical breakthrough, 25% or more of the human race could ultimately die of AIDS.

Her forecast is based on a World Health Organization report that 50 million to 100 million people will become infected by the AIDS virus by 1991, a figure that Crenshaw believes could rise to 1 billion or more by 1996.

The federal Centers for Disease Control estimates that only 20% to 30% of those infected with the AIDS virus will develop the invariably fatal disease, which destroys its victims’ immune systems and makes them susceptible to attack by opportunistic disease.

But Crenshaw, who is president of the American Assn. of Sex Educators, Counselors and Therapists, and some other health officials believe that, over a longer period of time, virtually everyone infected by the virus could develop fatal AIDS-related diseases.

Crenshaw cites a recent study in the British medical journal “Lancet” that found that only 40% of those infected by the virus were symptom-free three years later.

Crenshaw also has little faith that condoms are the key to preventing heterosexual transmission of the disease, though using them is considered better than using nothing. One study of 12 AIDS patients and their partners who continued to have sex using condoms revealed that the infection spread to the non-infected partner in two cases.

“There is no such thing as safe sex with an infected person,” she said. “There are only degrees of risk. . . . When I have sex with you, I have group sex. I have sex with everyone you had sex with.”

Crenshaw foresees a world in which the 1.3 million U.S. hospital beds will soon be fewer than the total number of AIDS patients. Centers for Disease Control officials estimate that 1.5 million Americans already have been infected by the virus. In 1991, Crenshaw said, health care for AIDS victims alone will cost the U.S. economy $66.3 billion, averaging as much as $300,000 per person.

“AIDS is going to govern our lives in a very unpleasant way for a very long time,” she said.

Teen-agers will be especially hard hit by the disease because their strong belief in their invulnerability will keep them from taking necessary precautions, Crenshaw said.

The only answer, the group believes, is a dramatic change in sexual behavior, widespread testing and relaxation of laws preventing health officials from notifying the sexual partners of people who are diagnosed with AIDS. Crenshaw said that she has been calling for a $10-million “Manhattan Project” to fight the spread of AIDS, but has raised no money in four years of public speaking.

For now, the group is targeting local public denial of the scope of the epidemic as one the most important obstacles to overcome. One member of the group, who asked to remain anonymous, said that even when discussions first began in November, she did not think that (AIDS) was “so close to our lives.” Since then, she has learned that a friend and local physician was secretly bisexual, contracted the virus and has given it to his wife.

Pincus spoke of her son, who was hospitalized several years ago for treatment of cystic fibrosis and received multiple blood transfusions. Despite his mother’s urgings and recent recommendations by Surgeon General Everett Koop, he has so far refused to take an AIDS test.

“I can understand it,” she said. “But everyone’s going to have to face up to it sooner or later.”