'SOMETIMES I WISH THEY HAD KILLED ME'

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Cohen told them she had heard similar stories of tragedy from HIV-infected women in Chicago where she worked at a public hospital. When she finished, one of the Rwandans raised her hand: "Are the women in Chicago also farmers?"

Cohen quickly decided she would return to "the land of 1,000 hills," as Rwanda is commonly called. Being there, she says, "allows me to feel that I'm still doing something related to all the women [in Chicago] I have known who have died."

American and Rwandan women opened the clinic in Kigali last July. The first site didn't have electricity, and Pap smears were conducted with a penlight.

The building and courtyard in Remera are the clinic's second home. It is scheduled to move again, they hope for good, into a modern, renovated space with pillars, faux marble floors and exquisite views of the city from a long balcony. Cohen says she will miss the old place, with its garden and "funky" courtyard. But the new building is centrally located and will be easier for women to get to.

By March of this year, the clinic had treated 900 patients, including 150 men. More than 400 people have been started on antiretroviral medication, or ARVs. The drugs were introduced in the United States about 10 years ago and have greatly decreased the number of AIDS-related deaths. ARVs are slowly beginning to arrive in Rwanda, which is used to help arriving late, if ever.

COHEN CAME TO Rwanda with the inspirational words of a former president and an ex-junkie ringing in her ears. In 2000, she attended an international AIDS conference in Durban, South Africa, and heard Nelson Mandela speak. "People," he said in his quiet-thunder delivery, "will be judged by how they respond to the AIDS epidemic."

Mandela's words touched her deeply, Cohen says, but it was a confrontation with a former drug addict in Chicago nearly 20 years ago that helped push her onto this path.

Cohen loves in-your-face people. They make things happen. She's one herself, though she'd have to stand on a stack of phone books to reach your face. So when a loud-as-brass woman named Ida Greathouse stopped Cohen in the hallway of old Cook County Hospital in 1988, demanding to know how she had the nerve to call herself a feminist, Cohen didn't get defensive or alert security. She listened.

Greathouse had HIV and knew many other infected women in Chicago. They had maybe made some bad choices, as she had with drugs, or married a cheating man who brought home Lord knows what. Maybe they just had rotten luck. But no matter how they joined, they were members of a sorority of sickness and death. And nobody seemed to give a damn.

As far as Greathouse could see, almost all the attention, research and resources were going toward figuring out how to save men with the disease. She wanted to know what Cohen, the so-called feminist in a white coat, planned to do about the disparity.

Greathouse stomped off, Cohen recalls, leaving behind a clear message: Put up or shut up, doc. Your sisters are dying.

Later that year, Cohen founded one of the first women's HIV clinics in the country at Cook County Hospital, where she has worked since 1976. Greathouse, who died in 1995, lived long enough to see the little clinic grow into a thriving model for the rest of the nation. But she will never know that the ruckus she raised in the hallway may help save the lives of thousands of HIV-infected women thousands of miles away.

RAIN FALLS AS DR. MARDGE is driven up through the hills, only 15 minutes from the teeming streets of downtown Kigali with its motorcycle taxis zipping along paved streets and the Internet cafes doing a brisk business until the electricity goes out again.

Way up here, near the clouds, it is like driving on the moon. The rutted road is filled with craters and rocks. The going is slow; then it stops. A boy is herding two big cows across the road. He pauses to stare at the muzungu -white person-before snapping a long stick in the air like a whip. The cows lumber away.

Cohen is used to being a curiosity in Rwanda. When she was spotted on another hilltop, a woman called out to the children to come quickly and see her. The children came running, smiling and pointing. Cohen smiled

back; she wasn't insulted. She is, after all, a muzungu. What she is not, she says, is Tarzan come to rescue the natives. She's here to be a partner, a friend.

With the cows out of the way, the car continues up the road. A few yards away, women till small patches of dirt with fingers and hoes. Schoolgirls in bright blue uniforms skip past, the dust and mud tagging along on the hems of their skirts. Goats graze in a yard and a man walks by with a huge bundle of wood balanced effortlessly on his head. In his hand he carries a rusty machete.

The climb ends at a tiny green house. A family of 12 once lived here. They tended cows and worked the land. It was a hard life, but it was life.

Then one afternoon the world went berserk. A band of men made their way up the hill. Armed with malice and machetes, they ordered everyone outside. They lined up the mother, father, brothers and cousins, everyone except two sisters who escaped into the bushes and listened as their family members were butchered.

The girls, 11 and 13 at the time, are the only members of the family to survive. They hid in the hills for days before being taken in by an orphanage, where "we were mistreated," the older sister says, looking down at the dirt floor. Cohen believes they are too ashamed to tell the truth, that they were raped.

"One sister was HIV positive and is often sick," Cohen wrote in her e-mail journal that night. "The other is too scared to get tested. . . . Their house has no light, no furniture, quite bleak."

Cohen sits in the small, dark house, listening to the sisters with her chin in her hand. Folding her arms across her chest she asks, "How are you feeling now?" A staff member translates her words from English to Kinyarwanda, the language everyone speaks in Rwanda.

Weak, hungry, afraid, they whisper in reply.

Don't be afraid, Cohen says. We are going to help.

Cohen was brought to the house by several outreach workers for the Uyisenga association, a group of women dedicated to the "care and affection of children." Rwanda has all kinds of associations, which are essentially self-help organizations. There are associations for families, for people living with HIV, for orphans living in tiny green houses.

Five associations send their members to Cohen's clinic for care. The Uyisenga group wants to do the same, and brought Cohen to meet the two sisters. "There are so many young women like them," says Domitille Mujawase, the association's economic empowerment manager. "We have a beautiful country, but a horrible history."

EVEN BEFORE THE madness of 1994, there had been several outbreaks of anti-Tutsi violence in Rwanda. Over the years, tens of thousands of Tutsis fled the country. In 1990, an army of them returned to overthrow the Hutu government. After nearly four years of civil war, a peace accord was reached. It did not last long. On April 6, 1994, the president of Rwanda, a Hutu, was killed when his plane was shot down over Kigali. Within hours of the fiery wreckage hitting the ground, the Hutu slaughter of Tutsis began, although even today it is uncertain who shot down the plane.

The killing ended only after the Tutsi-led rebel army chased the government into exile, sometimes committing their own atrocities along the way.

It's not hard to find survivors in Rwanda who believe spreading the slow poison of HIV was intentional, part of the master plan in the quest of "Hutu power." Although HIV and AIDS existed in Rwanda before the madness roared through, rape spread the disease faster and more widely than before, says Louis Munyakazi, director of Rwanda's AIDS prevention and treatment agency. He estimates the number of women infected by militiamen could be as high as 120,000.

Cohen and a small band of American women doctors, nurses and mental-health experts work alongside a few Rwandan doctors and nurses, trying to ease the suffering and fight the virus as best they can. "I care about women with HIV and violence in women with HIV," Cohen says. "Rwanda is a kind of ultimate example of that issue."

The group calls itself WE-ACTx, which stands for Women's Equity in Access to Care and Treatment for HIV. One of its goals is to combine care and research in much the same way as the Women's Interagency HIV Study, a decade-long research project in the United States that has been tracking 3,000 women to see how the virus affects them and the best way to fight it. The Rwandan project will track 800 women.

Cohen is the principal investigator in Chicago for the U.S. effort, and she will play the same oversight role for the Rwandan project, which received a $700,000 grant from the National Institutes of Health. Grants from foundations and individual donations provide most of the clinic's funds, and raising money is a full-time pursuit. Cohen keeps her stethoscope in one hand and a tin cup in the other. She raised $15,000 from friends in her North Side living room.

During a practice session for the research project, Rwandan patients were interviewed about their medical histories and their blood was drawn and sent over to a lab so the Rwandan technicians could practice counting cells. There was a problem, though. The nurses had a hard time getting enough blood. They stuck a couple of patients four times and still couldn't get what they needed. "The veins were small," Cohen explains.

Back home, small veins typically indicate drug abuse. In Rwanda, malnutrition is usually the reason. To get enough blood for the techs to practice on, Cohen rolled up her sleeve and a nurse drew a sizable sample.

As the first day of practice wore on, Cohen had to tell herself several times not to worry, to pretend that everything was going smoothly, to remember to say please and thank you. "Hurry up . . . please." She was telling the nurses what to do the next time they have trouble finding a vein. "After three sticks," she said, "call in someone else."

The nurses nodded their heads.

"Are they agreeing with me because I said it loudly or because they believe?" she asked.

Those who know Cohen, even for a short time, will tell you, "She's pretty intense," says Mildred Williamson, who was administrator of the women's HIV clinic in Chicago for nearly 10 years. "That intensity is driven by a need to do one's best for the patient. Mardge has a sense of urgency about almost everything."

The Rwandan research will probe how violence affects women with HIV, both physically and psychologically. Cohen's training taught her how to fight the disease, but she still needed someone who could fight the demons. When she returned to Chicago from her first trip last year, she called Mary Fabri at The Marjorie Kovler Center for Treatment of Survivors of Torture on the North Side. She asked Fabri, who has counseled torture victims from Central America to Eastern Europe, to join her on her next trip. Once there, Fabri quickly discovered how fearful the Rwandans were a decade after the genocide. "Everywhere you go," Fabri says. "People say with dread that [the militiamen] will be back."

The research in Rwanda includes a trauma survey. Among other questions, it asks women if they were "prevented from burying someone." To that, Naila M., a member of the clinic staff, would answer "yes."

In the first days of April 1994, Naila was in the hospital after giving birth to a premature daughter. She could hear gunshots and people screaming in the streets of Kigali. The genocide had begun.

Her baby was too small to leave the hospital. Mother and child were trapped for two weeks. Food ran out as the gunshots and screams got closer. "Most of the people in the hospital were waiting to be killed," she says. "I was waiting for it too. The people being killed were from my group."

Her group is the Tutsi, but she won't speak the word aloud. Saying who is Tutsi and who is Hutu is not something people do anymore, not without looking over their shoulders. The national policy is, "Don't ask, don't tell." The new government got rid of the hated identity cards introduced by the Belgians, who ruled Rwanda from WWI to the early 1960s. During the genocide, those cards were the difference between life and death.

Officially, there is no longer Tutsi or Hutu, just Rwandan. "People still have bitter feelings and memories, but they are silent," about ethnicity, Naila says. "We are silent so the next generations can live in peace."

As the killing got closer to the hospital, Naila's husband hired a private ambulance and several strong men to bring his wife and baby home. "The city was full of dead bodies," she remembers. "People could be killed at any minute. I don't know why I wasn't killed that day."

The family made it home, but later that night the baby died. Her parents couldn't risk going outside to bury her because militiamen were roaming the streets. Naila kissed her daughter's forehead and told her how much she loved her. How sorry she was. She said one last goodbye and put her baby in a bucket, the closest thing she could find to a casket. "Then I left the house," she says. "The militia was coming."

The couple fled to a rebel camp, where they waited out the genocide in relative safety. After the killing stopped, they returned home to find it had been looted. The bucket was gone.

UNTIL SHE WENT TO RWANDA, Cohen had not traveled far from Chicago's West Side to battle the AIDS virus. There was enough suffering and death just down the hall from her office at Cook County Hospital, now the John H. Stroger Jr. Hospital of Cook County. To take time out and go halfway around the world felt like abandoning her post.

Many of her patients become friends. They attended her kids' bar and bat mitzvahs and come to her house for dinner. She has wept at their funerals.

"I don't try to keep the professional distance," she says.

Rae Lewis, 42, has been one of Cohen's patients in Chicago for about 13 years. "She really saved my life," Lewis says. "We manage my HIV status as partners. She hears my voice and I hear her voice."

But when a patient doesn't hear her voice, Cohen has been known to raise it.

"She always says you don't have to do what you don't want to do," another longtime patient says. "But you always end up doing what she wants you to do."

Until the mid-1990s, the AIDS virus just sneered at anti-HIV drugs and went on killing. Physicians felt helpless, patients felt doomed.

Then along came antiretroviral medications. They weren't a cure, but people started living longer and better. "I don't go to as many funerals as I used to," Cohen says.

With the battle less fierce on the home front, Cohen was willing to join the fight in the Third World, where the funerals have not slowed down.

"The experience at County Hospital lends itself well to doing work in the Third World," says Dr. Renslow Sherer, a former Cohen

colleague at the hospital and himself a pioneer in fighting HIV. "Every lesson she learned there is now being applied in Rwanda."

About 25 million African people are infected with HIV; by the year 2025, that number could soar to 90 million, according to a recent United Nations report. Rwanda has between 600,000 and 800,000 infected people, Cohen says, and with few doctors or equipment the country's health-care system is overwhelmed.

The men's ward at the capital's public hospital has 36 beds. On the day Cohen visited, there were 54 patients. The women's ward had 64 patients and 36 beds. Two patients sharing a bed, lying head to toe, is not an uncommon sight.
 

"I saw a lot of things at County over the years," Cohen says.

"We had flies in the operating room. But I never saw two patients in a bed."

No one at King Faisal, the private hospital, sleeps two to a bed, but the hospital's CAT scan machine has been broken for more than a year. The public hospital doesn't have one. "Everything is a struggle, Cohen says.

She and the other WE-ACTx doctors and American volunteers have been rotating in and out of Rwanda, usually staying for two to four weeks at a time. A 30-year-old Rwandan doctor, Angelique Kanyange Rwiyereka, is the clinic's full-time physician.

Cohen spent a recent afternoon with Rwiyereka, seeing patients at the government's Treatment and Research AIDS Center.

A 37-year-old woman, her head wrapped in a green and yellow scarf, came in coughing. She handed the doctor her X-ray.

She had an enlarged heart, tuberculosis and 48 immune cells to fight the AIDS ravaging her tired body. She was so short of breath, they had to help her onto the examining table.

Cohen and Rwiyereka quickly agreed the woman needed to be hospitalized. She shook her head, "No." She had no one to care for her small children, one of whom has AIDS.

"Is there someone who can take the kids for a day or two if she plans it?" Cohen asked.

"If absolutely necessary, she says she will look," Rwiyereka translated.

"Maybe," Cohen said, "she should look tonight."

EVERY TRIP SHE makes to Rwanda leaves Cohen spent and energized, heartbroken and hopeful, she says. The reasons for despair are obvious. Signs of hope are harder to find, but they are there.

The Rwandan government is trying to deal with the crisis, she says. "The will is there, the resources are not." But she believes that is changing. Foreign doctors, money and medicine are coming into the country, dispatched by humanitarian agencies, American universities and Western governments hoping, perhaps, to make up for the past.

The Clinton Foundation, for example, has contributed millions of dollars for medicine and treatment in recent years-a far cry from U.S. inaction when Bill Clinton was president and Rwanda was drowning in its own blood.

In April, Cohen's clinic received $50,000 from Keep A Child Alive, a group that provides medicine to African families living with HIV in Africa. The money was part of a $250,000 grant from Oprah Winfrey's Angel Network charity.

For Cohen, Rwanda is another chapter in a lifetime of social activism. "I didn't get my eyes opened for the first time when I went there," she says. "I have been aware of and have cared about inequalities, poverty, changing the world for a very long time."

She developed her social conscience at an early age. Her parents in Queens went to anti-war rallies, sometimes with their children, and taught Cohen and her older brother Bobby, also now a doctor, to "do good in this world."

She came to Chicago in 1972 to attend Rush Medical College. Her plan was to return to New York City as soon as possible. But on her first day of school she met a fellow student from South Shore named Gordon Schiff. He loved Chicago, the wind, the lake, the city's fiery labor history. She asked him if he would join her at a lecture that night about acupuncture.

They were married in 1976, the same year they began their careers at Cook County Hospital.

Today she is director of HIV Women's research at the Ruth M. Rohnstein CORE Center, Cook County's facility for the treatment and prevention of infectious diseases. She has authored or co-authored dozens of medical papers and articles about HIV-infected women and the role domestic violence plays in spreading the disease. She also is an associate professor at Rush University and sits on several boards. "She's a rock star," says Mark Ishaug, executive director of the AIDS Foundation of Chicago.
 

Dr. Quentin Young, who trained her at County when she was just out of Rush Medical College, says she could be at a fancy private hospital or making a lot of money in private practice. "But she's a '60s kind of gal: challenge authority, don't bend a knee, make a difference," he says.

SHE PLANS TO return to Rwanda in June. But right now she is on the second floor of an Italian restaurant in Chicago, looking for an extension cord for her laptop. She has a Power Point presentation to make to about 50 participants in the U.S. study of women and HIV. Every few months they gather for lunch and a progress report from Cohen and her staff.

Cohen begins by asking for a moment of silence for the eight women in the program who died in the last year. The list of the dead used to be a lot longer and Cohen reminds the women of that. "Fewer and fewer people are dying from AIDS," she says. She speaks about the research for another 20 minutes before asking, "Do you want to hear about Rwanda now?"

The women say they do and Cohen taps a key on her computer. A map appears on the screen behind her showing the number of infected people in each part of the world. "As you can see," she says, "Africa is very hard hit."

She tells them about the women's associations in Rwanda that need help and gives a brief history of the genocide. On the screen is a photograph Cohen took at one of the memorials-row after row of skulls. The women gasp and one of them asks, "Don't you fear for your safety?"

"None of this is going on now in Rwanda," Cohen says. "It is going on in other places like the Congo."

"So don't go to the Congo," the woman says. "We need you."

Cohen tells them that many women were infected during the genocide and now they are getting sick. When they go to get tested, she says, many of them relive the horror of what happened to them. They can see their rapists' eyes; they can hear their children's cries, the last breath of their dying husbands. That's why some women don't go to get tested, she says. It's better not to know because it's better not to remember.

After Cohen's presentation ends, a woman asks, "What can we do to help?"

"We need to send them something from us," someone answers before Cohen can.

Toothpaste, towels, food. The suggestions start flying.

One woman stands and says they should hold a fundraiser. "We have so much that they don't have. We're some of the blessed women. We should share it."

As these women struggling with HIV in Chicago worried about poor and sick women struggling with HIV in Africa, Cohen didn't say a word. She didn't have to.

The spirit of Ida Greathouse was in her face, smiling.
 

Copyright © 2005, Chicago Tribune

Dr. Mardge Cohen has created a pooled fund at the Crossroads Fund to benefit her important work with WE-ACTx in Rwanda. To learn more and find out how you can help, please click here.