At age 6, Akinyi Shapiro remembers watching a “Sonic the Hedgehog” cartoon quietly in her family’s Bethesda home and then the shock of seeing her father cry. “I had never seen him cry before and I just sort of stared,” says Akinyi, now 17. Stuart Shapiro had kept his pain to himself for seven years, but on that day in May his tears fell openly. Upstairs, Awuor, his Kenyan wife and the mother of his young daughter, lay dead at 39. Or as Akinyi puts it, her mother lay “murdered.”
Murdered not by a gunshot or stabbing, but by AIDS. The disease had hacked away pieces of the outspoken short story writer, including her ability to talk, until it finally killed her. To cope with the spiraling tragedy—the initial diagnosis, concern his daughter might be infected, as well as the long death and eventual loss of his beloved wife—Stuart chose a unique path. He turned to research, altering his career so he could help battle AIDS. Today, Stuart is a scientific coordinator at the National Institutes of Health (NIH), working to advance the development of vaccines that could help prevent the spread of AIDS.
“No one should have to go through what my wife had to go through in dying, and what I had to go through in losing her,” the 60-year-old medical science administrator says with reddened eyes in his Bethesda office at the National Institute of Allergy and Infectious Diseases. Pausing between each word he says emphatically: “I want to wipe this disease out.”
Awuor died in 1996, but the loss remains fresh for Stuart. “All I have to do is close my eyes and I can see her dying,” he says. “I told her, ‘You can rest now,’ and promised that I would take care of Akinyi.
“My life has been a roller coaster ride,” he adds. “I’ve had some unbelievable highs and then had the lows to pay for it.”
The roller coaster ride was at its peak in 1989. Stuart and Awuor had been married for a few years and she was newly pregnant with Akinyi (who Stuart affectionately calls “Kini”). Stuart was an assistant professor teaching Immunology and Parasitology at the University of Illinois and Awuor was a graduate student studying comparative literature. “Both always had a good time and loved to have dinner parties,” says Awuor’s close school friend, Lewette Fitzgerald, who now lives in Long Beach, Calif. Awuor, whose name rhymes with amour, often danced when there was a tune in the air, particularly when African music played, Fitzgerald recalls. “We all had great fun then.”
Yet Fitzgerald recalls an odd shift in the couple’s mood. “After [Awuor] found out she was pregnant, my husband and I often would be over [at the Shapiro’s] house and we’d be socializing and getting dinner ready, but Stuart would be glued to CNN watching stuff about the smart bomb,” Fitzgerald says. “It was so unusual for him to be so unsocial. Now I know that it must have been that he was processing what was going on with them.”
Stuart, then 42, and Awuor, 33, were at her second obstetric visit when the doctor sat them down and said, “Well, the sickle cell anemia test is negative, but the AIDS test is positive so we have to talk about terminating the pregnancy.”
“In one sentence, our whole world fell apart,” Stuart says.
Stuart insisted they repeat the test. The second test confirmed that Awuor, despite her conservative lifestyle and outwardly healthy appearance, was indeed infected with the HIV virus. What’s more, the virus—they did not know how she contracted it—had beaten down her immune system, providing the mother-to-be with an advanced diagnosis of AIDS. At that time, AIDS was considered a death sentence, says Stuart.
Stuart was not infected and, despite the doctor’s advice to the contrary, he and Awuor decided to have the baby and fight the disease.
Their battle, filled with worry about their child’s and Awuor’s future, was a lonely one. Stuart and Awuor told her parents about the diagnosis because they wanted to take certain precautions when visiting them in Africa. They also told two of Stuart’s medical school friends, who could provide scientific advice. But no one else knew that Awuor was infected with the AIDS virus. Even Stuart’s twin sister was unaware for years of their turmoil. They kept silent because Awuor did not want to be thought of solely for having AIDS, says Stuart, and to protect their family.
Very early on they saw how the disease brought out the worst in people.
“We took our newborn daughter into an HMO clinic to get a blood test before we knew whether she was infected or not, and a woman shouted out from the back room, ‘I’m not drawing blood from that baby with AIDS,’ so everyone in the waiting room could hear,” says Stuart. “Things like that happened all the time.”
A ‘Horrific’ Stigma
That Stuart and Awuor chose to remain silent doesn’t surprise Sten Vermund, one of the two medical school friends Stuart confided in. “The stigma was horrific,” says Vermund, who has been involved with AIDS research for over 20 years and now heads the Institute for Global Health at Vanderbilt University.
Vermund says his own mother hated that he was in the AIDS field. “Everyday she was convinced that I was going to get the virus and that I was just helping drug users and gay men, with whom she had little sympathy,” he says. Then one year Vermund took his mother to see the AIDS quilt project and she viewed the expressions of love to those who died of AIDS from parents, siblings and lovers. “She finally got it and understood that [AIDS] is a lethal virus causing a devastating and horrible disease that afflicts every walk of life,” Vermund says.
Thanks to Vermund, who was working at NIH in the AIDS division at the time, Stuart learned that the anti-HIV drug, AZT, which was approved as a treatment for AIDS in 1987, could possibly protect his unborn child. Vermund told Stuart that plans for a clinical trial were underway to test AZT in pregnant women to see if it could reduce transmission of HIV from mother to infant. It was later discovered that if a mother avoided breastfeeding, a several month course of AZT in the mother and the newborn reduced the chance of infant infection from about 25 percent to about 8 percent, according to Vermund. Treatment regimens available today can drop the transmission rate to under 2 percent.
During her last trimester, Awuor took AZT every four hours, day and night, as well as a double dose just before she delivered. Also to help prevent transmission, Awuor didn’t nurse Akinyi. Then Stuart and Awuor waited and worried for 13 months until Akinyi could take a test to determine if she had contracted the virus. Akinyi was not infected.
The Shapiros tried their best to continue their lives as if Awuor also was free of disease. Stuart would get up early and go off to work and then come home about noon to prepare his lectures for the next day and take care of their daughter while Awuor went to her classes. “We tried to live normally, but sometimes I just used to close the door to my office and put my head down and cry,” says Stuart. To gain some control, Stuart decided to pursue the field of AIDS research so he might have an inside track on any advances that could save his wife’s life. He left his tenure-track faculty position at the University of Illinois and took a step down, accepting a position at the Food and Drug Administration (FDA) in Bethesda geared toward recent Ph.D. graduates who were just starting their careers and had less work experience than Stuart. No one suspected the move was to help his dying young wife.
Keeping such a secret must have been an intense burden, says his twin sister, Susan Haskell of Santa Monica, Calif. She found out about the diagnosis along with other close friends and family only a few months before Awuor died, when it was clear to Stuart that they had lost the fight. For a long time Awuor did not show any physical signs of having a deadly illness, other than shedding some weight. But about 11 months before she died, Awuor started to suffer from AIDS-related infections that left her in severe pain and feverish and tired. Awuor had to quit a teaching job she had started at Montgomery College. “From then on it was downhill,” says Stuart. Next, Awuor suffered a stroke and lost the ability to speak. Stuart called her parents to come help take care of her and soon after started telling close family and friends that she was dying.
Haskell wishes that Stuart had told her earlier about Awuor’s illness. She recalls she encouraged the Shapiros to have more kids. “I remember them looking at each other and just not responding,” she says.
Stuart remembers that he felt overwhelmed. On days that he managed to get himself into work, simple hallway banter, like “Hey, how’s it going?” by unknowing colleagues would stir up his grief. Akinyi says she did not really understand what was happening, but Stuart recalls that when he told her a few months before Awuor’s death, when she had just turned six, that her mom was very ill and may soon die, she asked if she would be an orphan. This made Stuart realize that he had to make sure Akinyi never felt abandoned.
‘I Had to Try’
In the end, medicine and research could not save his wife’s life. The AZT and other AIDS drugs she tried stopped working. After Awuor suffered the stroke that affected her speech, she contracted a type of tuberculosis that was resistant to antibiotics. “She wasted away,” says Stuart. A week after her burial, Stuart went back to work at the FDA, but recalls he was really the “walking wounded” trying to keep it together for his young daughter. “I was a zombie then,” he says. About a year later he was laid off. Stuart decided to dip into his savings, spend more time with his daughter and try to develop a vaccine on his own that could help prevent the spread of HIV.
“The vaccine did not work, but I had to try,” he says. After draining $50,000 from his account and borrowing money from his mother to help pay his mortgage, Stuart landed a job at the NIH in the AIDS division, where he works today as scientific coordinator for the Center for HIV/AIDS Vaccine Immunology, or CHAV1. Among other responsibilities, he provides advice to researchers on projects designed to aid vaccine development.
“[Stuart] is very persistent and dedicated,” says Rebecca Sheets, who works with him in the AIDS division and has known him since 1993.
These days, Stuart feels like he’s made his way back up the roller coaster. He recently married Jill Gay, an independent consultant working on international reproductive and sexual health rights. She says her husband is “driven squared—even more so because he doesn’t want anyone to go through what he went through with his first wife.”
Stuart says that if he can help an AIDS vaccine be delivered one day earlier than it would be otherwise, he will save thousands of lives. “All I have to do is get my day,” he says.
Stuart’s passion and his desire to apply his knowledge of AIDS to the public good was what first struck Peggy Johnston, who directs the vaccine research program in the AIDS division. “I also have to hand it to Stuart,” she says. “Given all he has been through, he has managed to raise a young woman who’s going to be a force herself and at the end of the day, that’s a sizable contribution,” Johnston says. “Stimulating the next generation, particularly in a field like this, where we don’t see an end in sight, is going to be the key to success.”
Akinyi, a freshman at Brown University, has decided to turn her tragedy into something that can help others. She plans to work in HIV prevention and human rights. She says her father taught her to center her work on what she finds most upsetting.
Akinyi’s mother’s untimely death is still near the surface. Tears flow as she recalls a time when she forgot what her mother looked like and her father had to dig up some old videos.
Stuart waited until Akinyi was 11 to tell her how her mother died, and asked her to keep the information quiet. “It was sort of awful,” she says. “It was like hiding a really big part of me and it led me to hide other things about myself and my experiences because I just didn’t want to talk about me.” Yet today she understands that her father did it to protect her from people’s ignorance and prejudices. Simply growing up with dark skin in Bethesda drove the point home for her. She recalls, for example, “Negro” being chanted behind her back during a class at Walt Whitman High School, where she graduated in June.
With Akinyi now older, Stuart and his daughter have started to openly share their history. “Once I explained it to my daughter I became more comfortable talking about it and I found that I could use it to inspire people,” says Stuart.
For Stuart, putting his heart into AIDS research helped him cope instead of crumble. “I’m back up there on top,” he says. “Who knows what’s going to happen next.”
‘I Was on Top of the World’
Born in Hollywood, Calif. in 1947, Stuart Shapiro’s intense work ethic and interest in social causes took root in college. A self-described Jewish nerd who wears a professorial beard and round glasses, Stuart attended the University of California in Berkeley during the 19605, where he participated in civil rights and anti-war demonstrations while studying biochemistry. “He’s one of the hardest working people I’ve ever known,” says Les Perelman, an associate dean at M.l.T. who attended UC Berkeley with Stuart. “He’d be involved in all these things, but after dinner he’d get on his bicycle and go to the library until midnight and study.”
At 22, Stuart moved to the Bronx and attended Yeshiva University’s Albert Einstein College of Medicine where, ironically, he studied retroviruses before anyone had even heard of AIDS. Stuart’s thesis supervisor, J. Thomas August, who is now at Johns Hopkins University and involved in AIDS research, recalls Stuart’s tenacity. “We started getting contamination in our cultures,” says August. “Stuart slept in the lab several nights trying to see if someone was sabotaging our [experiment].” It turned out that the culprit was yeast spores released during jack hammering in the building.
A few years later, with a medical degree and a doctorate degree in molecular biology almost in hand, Stuart started contemplating his next move. “I wanted my research to be socially relevant, more than just scientifically interesting,” he says.
At a discussion group where Stuart and his friends were talking about Marxism and socialized medicine, Barry Bloom, now dean of the Harvard University School of Public Health, provided some key advice. “[Bloom] said ‘you guys are full of shit’ and he could see what was going to happen,” says Stuart. “He said we were all going to get our degrees and end up in highly paid specialty practices in the suburbs and come to the city on weekends and hand out radical leaflets on a street corner, and that would benefit no one.” Stuart recalls Bloom telling the group to get smart. “He said that’s a terrible waste and that we should focus our research on diseases of the developing world, the neglected diseases, where people don’t have the resources to get research done themselves.”
That led Stuart to work in a lab in Nairobi where he studied diseases that affect livestock in order to improve agriculture in the developing world. He had planned on staying for two years but ended up staying eight. “It was the time of my life,” he says. In addition to conducting interesting research, Stuart explored the African culture. Often he would hang out on the countryside with the Maasai, an African tribe that still live quite traditionally. Once he attended a ceremony of about 1,000 Maasai that takes place every five to six years. During the ceremony the tribe’s male warriors graduate to become young elders and, as part of the event, they remove their clothes, chalk up their bodies and dance for hours.
Stuart met Awuor at a dinner party in Nairobi. Awuor grew up in Nairobi, but had a British private school education and recently had graduated from the University of Sussex in the United Kingdom. They shared a passion for heated discussions and debates and soon decided to marry in spite of some initial concern from both sets of parents. In the end, her father got over the fact that Stuart was not a member of their African tribe, the Luo, and his mother overcame her initial reaction of: “Well, you know she’s not Jewish.” They had four wedding receptions and a month-long honeymoon during which they traveled around the globe. “I was on top of the world,” he says quietly.
Bethesda writer Leah Ariniello has also written for the Philadelphia Inquirer and ABCNEWS.com.