COMMENTARY ON HEALTH CARE : Without More Treatment, Women May Be an AIDS Time Bomb : They will constitute most new HIV cases by 2000. But through shame, many ignore their symptoms and deny their pain.
AIDS is putting on a new face, a more feminine face. By 2000, more than half of newly infected adults will be women. Heterosexual transmission is increasing. In 1988 we were told by a leading women’s magazine that heterosexual transmission was a myth: AIDS was considered a gay man’s disease. The role of the woman at that time was to care for, support, advocate and educate, and we did all of those things. Then, as years passed, we began to see women with the virus.
In the late 1980s, one of the first women I met came to my house because she was embarrassed to go to an AIDS clinic. She had dated a man who told her he had a “nagging case of the flu”--she later found out he was bisexual and had died of AIDS. We discussed her telling her two teen-age daughters, but she was so ashamed I’m not sure she ever did.
When I met her she had full-blown AIDS, but she must have told me a dozen times that she was only HIV-positive and how healthy she was. The thought of telling her boss or co-workers was a moot issue. I don’t know what happened to her.
Another young woman I met had been a celebrity of sorts at her church because she had a religious experience and had given up alcohol and drugs. She turned her life around and met the man of her dreams. Later, when she had her first child, she found out she was infected. She did the logical thing and turned to her minister for support, but instead was rejected. She’s found a more accepting church where her life is dedicated to fighting her disease and educating other women. She thinks twice before sharing her HIV status.
Yet another woman had tried for years to get pregnant without success, so she decided on artificial insemination. She did not get pregnant, but she did get HIV. She was inseminated just before the test for HIV was required for semen donors. We think this is a rare occurrence, but wonder how many women who were inseminated before 1985 have been tested--or do they think it can’t happen to them?
Another friend of mine found out she was HIV-positive while carrying her first child. She lived through the hell of not knowing if her son was infected. After a year he was fine and HIV-negative. She decided that she needed to share with her co-workers that she had HIV. We had numerous meetings with supervisors and conducted education programs for her co-workers. She is now in an AIDS-friendly environment. She, however, is the exception and not the rule, as most HIV-infected women live in fear of people learning their secret.
These women all live or lived in Orange County. Most of them became infected in the days before we knew of the potential for women to get HIV. The disease is now preventable, yet the signs are that the number of women exposed is increasing. The stigma of the disease keeps many women in hiding at home and at work--afraid to tell friends and families, unwilling to risk possible discrimination.
Filled with shame, many women hide their HIV status, ignore their symptoms, deny their pain and isolate themselves. We believe there are still women who have not been tested for fear of the consequences. Some physicians continue to be unaware or misinterpret the manifestations of HIV in women, so testing and diagnosis are delayed.
Because AIDS originally was seen mostly in men, the research and drug trials focused on males, with very little information or clinical trials available for women. This year, through the use of AZT early in pregnancy, we have seen new hope for unborn babies of HIV-infected women. If we can find the women early in their pregnancy, we can reduce the risk of infection of 15% to 30%, which it was previously, to about 8%.
But in this political climate of cuts in social and health-care systems, monies for prenatal care, outreach education, testing and counseling are not readily available. As of Jan. 1, Senate Bill 889, authored by state Sen. Tim Leslie (R-Carnelian Bay), will require that physicians who see pregnant women offer HIV testing and counseling. This sensible approach to prevention of HIV transmission to infants is preferable to legislatively mandated HIV testing of all pregnant women.
Usually the woman is the caretaker of the family, putting her own needs last, after those of her husband and children. Women represent 13% of all cases in the United States, a 20-fold increase since 1981. There are a disproportionate number of women of color with HIV, and many face the barriers of poverty, domestic violence, substance abuse, lack of access to health care and an overall lack of power or control in their lives.
To address some of these issues in Orange County, the fourth annual HIV and Women Conference was held Nov. 18 at UC Irvine. More than 400 participants heard HIV-infected women share their experiences in a safe and caring environment.
A major concern expressed was that HIV testing is not offered to women going to their physicians, and at times when women do ask to be tested they are told they don’t need the test. I urge physicians to take sexual histories, become familiar with pre- and post-test counseling and think about HIV when recurrent genital herpes and vaginal candidiasis is seen. Since 1993, invasive cervical cancer, in the presence of HIV, has been one of the determining diagnoses for AIDS.
The theme of the conference was empowerment, seeking information and making choices. HIV-infected women shared their fears and showed their courage. Stopping the spread of the disease was emphasized, with techniques for helping women to say no and to negotiate safer sex.
Because HIV might not manifest its presence for 10 years or more, talking to teens who don’t see their friends developing AIDS is critical, because a decision made in a moment of passion can change the course of their lives. We must teach our teens that abstinence is a choice that they can make. Knowing how as a teen I felt invincible, I can understand the tendency to take risks. But just as we have become accustomed to fastening our seat belts, we must make safer sex the social norm if the decision to have sex has been made.
It has been predicted that there will be 97,800 new cases of AIDS in 1995 in the United States, and more and more of these are women. We must all look at what we can do to save the lives of our children, friends and family by providing the skills and knowledge to be safe. What you don’t know can kill you, and what you don’t say can kill someone else.
