The women gather every Wednesday afternoon at Cook County Hospital. Today they’re in a conference room, the fourth meeting place they’ve had in the last two months. Space is precious at the hospital, and nonmedical activities must yield to the demands of the critically ill. So this support group has yet to find a lasting home. The 15 women who are here sit in a kind of semicircle. A few are white or Hispanic, the majority are black. They range in age from mid-20s to mid-50s. Some appear to be poor, some middle-class. Several are accompanied by small children.
The tone of the gathering is reminiscent of an Alcoholics Anonymous session–upbeat and guardedly optimistic. Donna, a thin young woman who speaks so softly she can hardly be heard, has good news. “I found out the baby is negative,” she says, smiling shyly. “And, um, I’m in a GED class.”
Everyone claps. “Congratulations!” they say. “Nice going, girl!” “Good for you, Donna!”
Chris, who says she was “diagnosed positive” in early 1989, is pleased to report she still has no symptoms–“and I’ve been sober for a whole year now.” More applause.
Florence, who has five children, says she has been sober for two years but admits to a continuing drug problem. “At least I’m OK today,” she says. Murmurs of guarded approval.
Another member of the group dissipates the cheer. “I just found out about this two weeks ago at a clinic in Waukegan, and I’m trying to let it register.” Her boyfriend, she says, “just disappeared” when she told him. Hands are extended to her in sympathy and support.
“I’ve been up and down lately,” says another woman who looks very tired. “I just buried my brother yesterday. It was alcohol with him.” She shakes her head.
“Yeah, it’s tough,” says the woman sitting next to her.
Several others try to restore a more positive atmosphere. One explains her volunteer work for a charity walkathon and passes out leaflets to the rest. Another talks about her work at church, her “service for the Lord,” and how she’s come to believe every day is a blessing. There are nods of genuine approval.
“I don’t have that negative attitude these days,” says still another. “I’d say my life is shaping up better than ever.” An older woman says “Tell it, girl.”
Some in the circle look to be in vigorous good health; others appear weary or preoccupied. Only one is clearly ill: a rail-thin, middle-aged woman with a patch over one eye who sits in a wheelchair and does not participate in the conversation.
Alcohol or narcotics problems are only tangential to this group. The common denominator is HIV, which they all share and with which they are trying to cope.
Marla, who’s been sober for a year, presents a problem. “I’ve met a person I really like. Do I tell him or not?”
The pace of conversation slows down. “Well,” begins one of the older women, “I think you gotta educate him. You have to make sure he uses condoms.”
“Yes, but that’s just the trouble,” says another woman. “Men don’t want to be bothered with that stuff.”
“No,” interrupts the older lady, “you have to tell him now–about yourself–before your feelings go too far.”
Not everyone seems to concur, and a short debate ensues. Finally someone says, “Marla, what do you feel about this yourself–on the gut level?”
Marla ponders. “I feel he’d still have the same feelings toward me,” she says very slowly. “But I’m not sure he’d want to develop them–into intimate relations–I guess.” Her voice trails off. No one has a surefire solution.
The conversation moves toward preventing infection and gets eminently practical. One woman, using a banana left over from her lunch, shows the proper procedure for putting on a condom “so as to keep it from bursting.”
“You have to insist they use it,” she says. “In fact, you may have to put it on him yourself. You do not want to infect him or get your own self reinfected.”
“I don’t know,” comments one woman. “Sometimes I think men want to get infected.”
The meeting lasts about 90 minutes. Many of the women have to get back home to meet their children when they return from school or retrieve little ones from the baby-sitter.
Deane Taylor, the facilitator of this gathering, says today’s discussion is fairly typical of the weekly sessions. The goals are as broad as the needs of the participants: dealing with fear and grief, escaping abusive relationships, learning how to explain their HIV status to relatives and friends, arranging personal affairs, and finding practical ways to make a balky, reluctant health-care system work for them, not against them. The support group, says Taylor, works as a kind of extended family–women providing each other the will and power to continue.
Taylor is director of preventive education for the Women and Children With AIDS Program at Cook County Hospital (WCAP), and the support group is but one of the myriad services it provides. The program, which began in July 1988, is the brainchild of two doctors long involved in women’s health issues: Mardge Cohen and Renslow Sherer.
Cohen, now the program director, has been a general internist at County Hospital for 15 years. From her earliest days on duty, she says, she has seen how overwhelmed the hospital is and how ill equipped it is to deal with the special needs of women who are HIV-positive or who have the symptoms of AIDS-related complex (ARC) or full-blown AIDS. “These people were coming through here, and we were seeing them all the time. You can’t avoid that at an institution where 6,000 women deliver babies every year. All over the city we could see a growing concentration of services for gay men and IV drug users who were HIV positive–but nothing for women. AIDS was first and foremost a men’s disease.” As a result, she says, women were “slinking through clinics,” getting misdiagnosed or thinking they were the only person in the world who had ever tested positive.
Cohen, a short, very direct woman of 39, is not the long-suffering type. She is forceful, determined, and extremely knowledgeable about health-care issues–her conversation is sprinkled with terms such as “entitlements,” “vectors,” and “punitive modalities.” When the most persuasive arguments of Cohen and Sherer failed to persuade Cook County Hospital officials to fully fund the special project, the duo approached large charitable foundations. They obtained a grant from the Robert Wood Johnson Foundation to set up WCAP as a kind of all-purpose clinic and service provider. It is now into its third year.
The idea, says Cohen, is to have comprehensive medical and support services at one site. That means providing professional counseling, especially for chronic problems such as alcohol and drug abuse that may go along with AIDS; assigning case managers to help women get the medical care and financial aid they’re entitled to; and offering services such as health education, legal advice, child care, and peer support groups.
The clinic, the only one in Chicago with so much at one site, now has nine full-time employees and a sizable contingent of part-time medical providers. It is open as an outpatient facility all day on Wednesdays and has thus far assisted more than 300 women who have AIDS-related symptoms, treating about 30 on any given Wednesday. The rest of the week staff members work with female patients at the hospital, particularly in the area of AIDS education, and give lectures in the wider community. Yet Cohen and her coworkers don’t delude themselves that this venture amounts to anything more than a drop in the bucket–or better, a humble beginning. By March 1992, when the grant from the Johnson Foundation expires, they would like to see well-funded and professionally staffed programs for women and children with AIDS sprouting up all over the country. If current predictions are accurate, such programs may be absolutely essential.
There is scarcely any modern health-care subject that is murkier than women with AIDS. What is known is chilling enough. On the international level, according to the World Health Organization (WHO), some 3 million women are infected with the AIDS virus and approximately 700,000 babies are born HIV-positive every year. It is anticipated that more than 200,000 women will develop full-blown AIDS in the next 18 months. By the year 2000 experts predict the annual number of AIDS cases among women will equal that of men. Also by 2000, says WHO, 10 million children will have been born with the AIDS virus, and another 10 million who are not infected will have been orphaned because of the AIDS-related death of their parents.
Most of this tragedy will occur in sub-Saharan Africa, where AIDS is already a 20th-century Black Death. But the more modest figures for the United States are not especially consoling. Reported cases of AIDS among women have grown 29 percent in the last 12 months, and women now constitute almost 10 percent of those diagnosed with the AIDS virus, according to the Centers for Disease Control in Atlanta. Though the disease has not spread as rapidly in Chicago as in some other large cities, it is making headway among women, probably far more than official reports indicate.
Using admittedly sketchy information, the Chicago Department of Health estimated there were approximately 250 women in Chicago with AIDS in 1989 and 360 in 1990. In 1991 the figure is expected to rise to more than 500. The Department of Health anticipated that the total number of Chicago women with the AIDS virus will soar from about 9,000 in 1989 to almost 18,000 in 1991. The department makes no estimates for children. However, the Visiting Nurse Association of Chicago (VNA) estimated in early 1990 that there were about 3,000 women and children infected with the virus in the city. Some experts say that number is increasing at about 1,700 a year. All information gatherers admit their data on women and children are extremely spotty and probably too conservative.
So why don’t we have better information? The answer lies partly in an entrenched prejudice on the part of the medical establishment. The Centers for Disease Control clings to a case definition of AIDS that excludes many of the disease’s symptoms that are manifested in women. Because those affected first were almost exclusively men, the definition is centered on how the disease shows up in men–gynecological conditions are still not included as signs of ARC or full-blown AIDS. As a result some very sick women are misdiagnosed, and because they are not considered to have an AIDS-related illness, they are not eligible for AIDS-related Social Security benefits.
The problem is spelled out by two doctors, Kathy Anastos and Carola Marte, in the bulletin of Health/PAC (Policy Advisory Committee), a New York-based advocacy group. “For example, HIV-infected women with severe infections of their fallopian tubes are not categorized as having AIDS. This is in spite of the fact that many doctors have found that these infections are worse in HIV-infected women, while treatment is more difficult and less likely to be successful. This resistance to cure by ordinary therapy is a sign of a failing immune system. Similarly, vaginal yeast infections in HIV-infected women are more severe and less likely to be cured by ordinary therapy. A woman may suffer from vaginal yeast infections even before she has thrush, a yeast infection of the mouth that affects both women and men and that is officially used as one of the criteria for a pre-AIDS condition. Does it make sense that the same infection in another orifice–an orifice not present in men–is not categorized as an AIDS-related condition?”
Published reports, note Anastos and Marte, indicate dramatically higher rates of abnormal pap smears and cervical-cancer cases in HIV-infected women than in uninfected women. And cervical cancer in women with the AIDS virus is known to be more severe and life threatening. Yet neither of these conditions is considered AIDS-related, according to the Centers for Disease Control. “Clearly,” say the doctors, “the case definition of AIDS . . . should be revised to include those women whose severe infections and malignancies are obvious manifestations of immune system failure induced by HIV infection.”
Another problem is that since women are not expected to have AIDS, their HIV status may not be discovered even when they have symptoms that are universally accepted as AIDS-related. One study showed that women with pneumocystis pneumonia, the most common opportunistic infection in AIDS patients and a major cause of deaths, were more likely to be treated by doctors for minor respiratory ailments than for the real illness. The bottom line is a higher death rate from such infections among women than men.
A study by the National Women’s Health Network revealed a dramatic increase in deaths among women aged 15 to 45 from a variety of respiratory and infectious diseases between 1981 and 1986 in cities with a high incidence of AIDS: a 225 percent jump in Washington, D.C., and 154 percent in New York City. Yet only a handful of these deaths were diagnosed as related to AIDS. A comparison study in Idaho, where AIDS is rare, revealed no increase in such deaths.
This situation is intolerable, says Dr. Cohen, who recently returned from a conference on women’s health issues sponsored by the National Institutes of Health. “Despite all the evidence, the government still ignores gynecological manifestations as signs of AIDS. The Centers for Disease Control says they have to do more studies, they have to take more time. They say, “We’re not ready!’ Well, we say, people are dying!” Such foot-dragging, she says, is just another instance of the medical establishment’s long-standing refusal to take women’s health concerns seriously.
Using an all-male or virtually all-male population to study an illness and develop treatment procedures has had an adverse effect on women with various kidney, lung, and heart disorders in recent years, adds Sally Rynne, president of the Evanston-based Women’s Healthcare Consultants. “You wouldn’t think we would have to be traveling down the same road again,” she says. “But we are.”
One of the most loyal members of the WCAP support group is a petite woman named Barbara Johnson, for whom AIDS education has become a cause. She is not sure when she caught the virus, but she knows it didn’t happen by some accidental contact, for example, during a trip to the dentist’s office. Johnson, who is 42 and has AIDS-related symptoms, could have been infected on any one of hundreds of occasions during the years she was heavily into drugs and prostitution and living part of the time with a bisexual man who was a dope addict. “It was a terrible way to live,” she admits. “I got beat up a lot.”
Johnson now seems to have her life in order. She devotes much of her time to being a peer counselor for WCAP. When she meets with groups of women at Kennedy-King College or local hospitals, she pulls no punches talking about her own life and passing along advice about having safe sex and avoiding drugs. Ironically, it was only when she discovered she had the AIDS virus that life became precious. “All of a sudden I wanted to live,” she says, and laughs. “All those years I had been blaming everybody and everything for my misery. And I finally knew who was to blame–me!”
The word came in 1985, when she was in the hospital for treatment of an ovarian cyst. The previous year she had been hospitalized for pneumonia. In fact, she had been tired and losing weight for some time. Her doctors thought she might have a chronic form of mononucleosis. Then they decided it was another sort of lymph-gland infection. Since she was a drug abuser, they probably reasoned she would be subject to a variety of infections. But the simple test for the AIDS virus did not come until after she had been dragging around for well over a year and had shrunk from her usual 116 pounds to 95.
“At first I was devastated when I found out,” she says. “I didn’t exactly know what HIV-positive meant, but I knew it was nothing good. Then I knew I’d have to reprioritize my life.”
Today she weighs 99 pounds and looks reasonably healthy. Then she lists the symptoms that crop up from time to time: genital herpes, memory lapses, night sweats, recurring pneumonia. Her infection-fighting T-cell count is under 500; a normal count is between 800 and 1,200. The loss of the cells means her immune system is not well equipped to fight opportunistic infections. She is on AZT but admits she doesn’t take it faithfully because she doesn’t like the side effects. “I try not to worry,” she says, displaying a kind of stoic calmness. “The important thing now is to help somebody else along the way.”
Johnson was born in Jackson, Mississippi, and moved to Chicago with her mother and younger brother when she was about seven. They were among the early residents in the Cabrini-Green housing complex. “I missed my father and two older brothers. I resented my mother dragging me up here.” Her mother, she says, handled her with strict discipline and occasional beatings with an extension cord, which only increased the resentment.
At 16 Johnson left home and began moving sporadically from Mississippi to Chicago and back again. At 20 she had the first of her two children. She planned to marry the father, who was in the Army, but he was shot and killed in Chicago, apparently in a narcotics-related incident, shortly before he was scheduled to depart for Vietnam. A few years later her brother was killed by a sharp blow to the back of the head, also in Chicago, also apparently in a drug incident.
Johnson’s later marriage to a young man in Mississippi proved short-lived; her mother arrived on the scene, persuaded her to leave her husband, and brought her back to Chicago, where she found her daughter a job as a long-distance telephone operator. When the bewildered husband came after Johnson, she lacked the will to defy her dominating mother. “I was pretty messed up,” she says. “I couldn’t make decisions.”
It only got worse in the 1970s. She developed a heroin habit that her Illinois Bell job could not support. She began dealing drugs and working as a prostitute. “The thing I was best at during those years was shoplifting. I’d wear a big smock and go into stores anywhere–State Street, Michigan Avenue, the north side–and I’d come out with electrical appliances: toasters, coffee makers, cast-iron skillets. I stole lots of linens and clothes too.”
She was chased plenty of times, badly cutting her feet once when she had to kick off her high heels during a footrace with a security guard. She was caught occasionally and spent time at County Jail. Her mother took over raising her two children (the second was born when Johnson was 23), while Johnson wallowed in a relationship with a heavily addicted, sometimes abusive man who was sexually active with a variety of men and other women.
In 1976 a priest she met got her into a treatment center. Her life straightened out for a time, only to come apart when she took up with a new boyfriend. He was an older businessman who shared his ideas and his cocaine habit with her. Before long she was back into stealing and prostitution to pay for her narcotics. By 1984 she was stealing regularly, drinking to excess (two cases of beer a day), using heroin and cocaine, and facing a possible sentence to the women’s prison at Dwight, Illinois. She developed a series of suspicious medical symptoms that doctors treated for well over a year before someone thought to test her for HIV.
Johnson then went into a drug and alcohol treatment center, this time for more than six months. She emerged a changed woman. “You know,” she says, “I don’t think I ever got over losing my father when I was so young. Maybe I was looking for a father all those years.” Now, she says, she has forgiven her mother and tries to help her daughter, whose two-year-old has cerebral palsy.
She professes no anger at the God who lets people make such awful messes of their lives. “Mad at God? No way! It’s only because of God that I’m still waking up every morning.”
WCAP aims not only to educate about AIDS but also to ensure that women’s reproductive rights are guaranteed. And when AIDS is involved, that can be tricky. Much of the counseling of HIV-positive women involves promoting safe sex, which includes taking practical steps to avoid pregnancy. According to Dr. James Curran, director of AIDS activities at the Centers for Disease Control, “There is no reason that the number of [children with AIDS] cases shouldn’t decline. Someone who understands the disease and is logical will not want to be pregnant and will consider the test results when making family-planning decisions.”
Unfortunately, not everyone understands the disease as well as Dr. Curran, nor is everyone logical. Studies have indicated that many HIV-positive women choose to have children even after they have been counseled about the risk of passing the virus on to their babies. (It is estimated that about 35 percent of babies born to infected mothers will be infected.) Advocates of women’s reproductive rights worry as much about the possibility of coercive public legislation (such as forced abortions, compulsory sterilization, or required and repeated testing of all women of childbearing age) as they do about the dangers of so-called “vertical” HIV transmission, from mother to child. They are also concerned about the moral coercion applied by powerful prolife forces such as the Roman Catholic Church, which bans the use of condoms and other forms of artificial contraception and yet absolutely forbids abortions.
In several cases hospitals have been sued for compelling HIV-positive women to have abortions. In one notorious 1989 instance, a New York City woman, identified as “Carol Doe” and a native of Haiti, claimed Kings County Hospital officials performed an abortion on her without offering counseling or obtaining her signed consent. She had gone to the public hospital after officials at a private hospital refused to deliver her baby, claiming the child would be a burden on society. Doe, who still insisted on having the child when she went to Kings County, said she was forced to submit to the unwanted abortion after being placed in an isolation ward. A final decision has not yet been rendered in the case.
The kind of coercion Doe reported is increasingly common in U.S. hospitals, according to Vicki Alexander, director of the Community Family Planning Council in New York City. Hospitals and doctors, she told a Health/PAC Bulletin writer, “aren’t willing to give poor women and women of color who are HIV-positive the same kind of choice that they’re willing to give other women who are high risk for different reasons. The most vulnerable population is being denied any right to make this choice and being discriminated against in terms of access to health care.”
At Cook County Hospital abortions, wanted or unwanted, are a moot point since they are not allowed (though the new county-board president, Richard Phelan, is pressing to reverse the prohibition). Says Mildred Williamson, another facilitator for WCAP, “Our philosophy is give out information, discuss the risks, and then abide by the client’s decision.” If it’s to have the baby, the project has high-risk obstetricians available. After delivery the baby is carefully monitored for up to 24 months to determine if it has contracted the virus. If the decision is to end the pregnancy, the project refers women to hospitals that can legally perform abortions.
The utter vulnerability of many women with AIDS is best revealed in a 1990 study sponsored by the Visiting Nurse Association of Chicago. The study probed the needs of more than 270 women who either were HIV-positive or had children with the virus. Many in the study had ARC symptoms or AIDS. The study found that 22 percent had no friends or relatives willing to help them cope with the disease, while another 32 percent had only one such person; 54 percent had received no individual counseling and belonged to no support group; 73 percent had required hospital care in the previous six months; 15 percent needed skilled nursing care at home; and 24 percent had been forced to move during the previous six months. Not surprisingly, those with overt symptoms needed far more services, including financial planning and legal aid.
The study also determined that 63 percent of the women had used IV drugs; 22 percent had been involved with an infected man; and about 12 percent had been exposed through blood transfusions.
The VNA researchers concluded: “The women are by and large poor minority women with few resources. . . . These are young women most of whom have children; and as they are of childbearing age, a number of them can be expected to bear more children. The women have overwhelmingly become infected because of their own IV drug use or because of their connection, through their husband or partner, to the IV-drug-using community.” The VNA presented 27 recommendations, ranging from better baby-sitting services, drug treatment, and employment opportunities to increased hospice programs and low-cost funeral services.
“I believe they will find a cure for AIDS,” says Cheryl Womack (not her real name). “I feel it’s meant to be, especially for the children who haven’t had a chance to live yet.” She looks at her baby, Andre, who is wolfing down a biscuit, and pats him on the head. It is difficult to believe Womack has any children. She is tiny herself and has a kind of childish innocence about her. But she is actually 33, and Andre is the youngest of her eight children. She was married at 19, bore her first baby at 20, and spent most of the next 11 years pregnant. “I always loved children,” she says. “So did my husband. He came from a big family.”
Womack is HIV-positive; so is Andre. Throughout her married life she was monogamous, heterosexual, and drug free. She contracted the virus from her husband, who, she explains, “got into cocaine and heroin” about eight years ago.
She and the kids share a three-bedroom apartment that contains only the minimum–a few pieces of furniture in the living room, a kitchen table and chairs, ancient bunk beds in the bedrooms, and a television set. On one wall hangs a plaque that says, “Those who bring happiness to others cannot help but bring it to themselves as well.”
Andre and the two other children not yet school-age scamper across the bare wooden floors, chasing a three-week-old puppy. “Mom,” shouts the four-year-old, “he peed on my shirt!”
Womack laughs. “If you’d leave him alone, he’d be all right.”
Womack’s husband died last March of toxoplasmosis, a severe infection associated with AIDS. He had been in and out of the hospital for months with epilepticlike seizures. In an ambulance on the way to the emergency room in the middle of the night he passed away. His 12-year-old son was the only family member with him at the time. Womack had to remain home with the younger children. When she learned that he was dead, she was also told that her in-laws had taken her son into their custody, did not intend to return him, and planned to seize the other children. She was so frightened that she didn’t even attend the funeral. “If I took the kids out, I thought somebody would snatch them. And I was scared to leave them alone at home.” It took her three months and considerable wrangling with juvenile-court authorities to retrieve her son.
Through WCAP Womack has been able to arrange much of the financial, psychological, and medical help she needs–at least for the time being. She gets survivor benefits and some disability payments because of her own condition; she also receives food stamps. She is able to pay rent, food, and utility bills–but little else.
One of her biggest problems is baby-sitting, since she has appointments at various clinics almost every day of the week–sometimes two or three a day. Several of her children require speech therapy or treatment for chronic ear, nose, and throat conditions. Two-year-old Andre needs the most attention. He has an enlarged liver and spleen, so Womack is extremely careful about keeping every appointment. Since she has no car, she usually has to bundle up the three youngest, take the bus to the baby-sitter’s house ($5 an hour), drop off the two older children, then get on another bus with Andre for a 45-minute ride to the clinic. By the time she gets back, the older children are coming home from school and it’s time for dinner.
Womack says she’s too busy to notice if she has any symptoms of HIV infection other than occasional night sweats. Her regular state of near exhaustion, she says cheerfully, is probably due to the pace she keeps.
Womack’s husband was a general contractor, a good provider, and a loving husband before he became a drug abuser. “It started with him about 1983,” she says. “I tried to get him to stop. I had him arrested. I even left home for a time and went on public aid. He had a real expensive habit.”
She finally persuaded him in 1989 to enter a treatment program, from which he emerged with a clear resolve to reform. But the decision came too late. He tested positive for the AIDS virus in August 1989 and developed AIDS-related pneumonia in September. When Womack had herself and the children tested, she found out she and Andre were also positive.
She holds no grudge against her husband. “He got so sick, and he was so sorry the way it was turning out. His main concern was for me and the baby.”
On Wednesdays, Womack is often at the WCAP support-group meetings. She is not as outspoken as some of the women; usually she sits quietly, listening intently, looking like somebody’s lost little girl. “So many of the women in the group were drug abusers, so I don’t have a lot in common with them,” she says. Then she quickly adds, “Don’t get me wrong. I’m no better than anybody else. We’re all in this one day at a time.”
Women and Children First
In addition to the WCAP program (633-5080), a variety of other Chicago institutions and agencies provide special assistance to women, children, and families with AIDS-related problems. Among them:
Art accompanying story in printed newspaper (not available in this archive): photos/J. Alexander Newberry.