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KIWAKKUKI was founded in 1990 with a simple mission: "to
facilitate the provision of services to those infected and affected
by HIV/AIDS." But what was so attractive to the many women
who would later join was the message implied by the group's very
existence: As women, they were the likeliest victims of this disease,
and unless they did something about it, unless they supported one
another by coming together, many of them would soon be dead. In
Africa, women between the ages of fifteen and twenty-four are three
times as likely as young men to be infected with HIV, in part,
according to the World Health Organization, a result of their inferior
social status and financial dependence on men. KIWAKKUKI intends
to change that. And Duke intends to help. For each of the past
three years, the Sanford Institute of Public Policy has sent a
Hart Fellow to help the organization attract funding and to conduct
research informing health policy. In 2003, that fellow was Carl
James.
With a self-designed major in international public-health policy,
James '03 knew as early as his sophomore year that he wanted to
work on health issues in Africa. He'd been astonished, he said,
by what he'd learned in a course called "AIDS and Emerging
Diseases," and decided to spend his junior year in Kampala,
Uganda, researching perceptions of HIV/AIDS in rural communities. "After
that experience, I was looking for any way to get back here," he
said.
By the time I caught up with James in Moshi, he was at Fukemi Primary
School, high on the rain-forest slopes of Mt. Kilimanjaro. A thick
morning mist hung over two small buildings where boys and girls
in tattered blue and white uniforms recited numbers in English. "Repeat
after me" said a teacher. "Four hundred and forty-four!" And
small voices echoed in unison, "Four hundred and forty-four!"
James was there to collect data for professor of public-policy
studies Kathryn Whetten. In 2002, Whetten, who is also director
of Duke's Health Inequalities Program, launched a four-year, six-country
study charting orphans' development, cognitive and physical, in
different living environments. By the most recent estimates, AIDS
has orphaned more than 12 million children in sub-Saharan Africa
(between 1.5 and 2 million in Tanzania alone), and the number is
expected to triple by the end of the decade.
James tested the children on basic skills and weighed and measured
them to assess their physical development. Some of the children
were so shy, and perhaps so startled by the visit, that they wouldn't
respond at first. Speaking softly in his halting Swahili, James
gave instructions. "I want you to draw the picture that I
show you," he told a girl named Nema. "Sawa (Okay?)" Nema
nodded a tiny head, much too small for a seven-year-old girl.
The orphans at Fukemi were being supported by KIWAKKUKI. When their
parents died of AIDS, they went to live with their grandparents,
and, every few months, volunteers from KIWAKKUKI would bring them
clothes and money for school fees. James told me that these orphans,
even the malnourished among them, are the lucky ones. The others,
he said, the orphans without anybody, tend to end up on the street. "They're
the ones," James said, "who go to Val."
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| House calls: Duke medical student Helen Chu checks a patient's vital signs
Photo:Chris
Hildreth |
Valerie Johnson '02 is the director of Amani Children's Home, a
nonprofit organization in Moshi that is a place of refuge for more
than sixty street children. (Amani is Swahili for "Peace.") "We
give them a warm bed, food, clothes, safety, school fees, counseling,
and love," she told me. "But we're not an orphanage.
Our goal is to reunite them with family. If the parents are dead--and
many are--we try to find a relative or village member who is able
and willing to take them in."
Johnson had arranged to give me a tour of the Amani grounds one
afternoon after the kids returned from school. As I was entering
the Amani compound through a gate colorfully painted with pictures
of Tanzanian wildlife, a small boy was exiting. He was running,
in fact, as fast as he could, with a wild grin on his face and
a stick in his hand. I learned later that this is a regular occurrence
at Amani: The boy, Doudi, five years old and autistic, bolts at
the sight of an opened gate and runs screaming down the road, with
the bigger boys hollering and chasing after him, scooping him up,
and carrying him back home.
It was a fitting introduction. Though Amani is bursting with energy--singing
and dancing, tire races and soccer games, and the usual chores
of feeding the chickens, washing clothes, and tending to the garden--affliction
runs deep. Most of the children came in from the street. Some were
beaten. Some raped. Others starved for weeks at a time. Doudi,
for one, was found at the bus stand in town, his autism likely
the result of severe malnutrition.
Johnson founded Amani in the summer of 2002. She was in Moshi with
a group called Visions in Action, which sends volunteers to developing
nations to work with indigenous groups. One day, on a visit to
the market in town, she came across a group of five children sleeping
beside the road. "A couple of adults were trying to give them
some shelter under a roof they'd rigged up," she recalled. "But
they didn't have anything [else] to give them. Just some rice and
water. So I started helping them out."
Johnson took over. She registered the group with city officials
as a nonprofit organization. She recruited members of her Bible-study
group--a priest, an accountant, a missionary doctor, an official
in the Tanzanian Social welfare department--to sit on Amani's board.
And, within weeks, she managed to raise enough money to move the
group into a house on the outskirts of town.
At first, Johnson and the kids struggled to get by. They slept
on the floor and ate only rice. But more funding came in, and soon
five kids became ten and then twenty and gradually Amani was transformed.
A group of British missionaries painted the house. College students
built the "kitchen," a shack over a grill, outside. Other
volunteers planted banana and mango trees. A school donated a swing
set. Today, forty-three of the sixty children are enrolled in school.
When they get sick--with flu or malaria--a nurse is there to treat
them. Doctors from KCMC come to give checkups and perform circumcisions,
a disease-prevention measure and a rite of passage for the Chagga,
the predominant ethnic group in Kilimanjaro.
The day before I left town, I visited KIWAKKUKI to say my goodbyes,
and inside I spotted some Amani kids. "Jambo," I said. "What
are you doing here?" "UKIMWI," was all they said.
(The acronym stands for "Ukosefu wa kinga mwilini," a
lack of protection in the body--Swahili for HIV.) They were getting
their tests. At ten and eleven years old, they knew what the tests
might tell them. But they weren't scared--or at least they didn't
show it. As I walked away, they carried on talking and laughing.
The moment reminded me of something Chu had told me: that in her
interactions with patients she'd often been aware of a sense of
fatalism; that the disease seems to have been accepted, like poverty
or rain, as a fact of life. And I came across the same sentiment
when I talked to Cathy Wilfert, Duke professor emerita of pediatric
medicine and, since 1996, scientific director of the Elizabeth
Glaser Pediatric AIDS Foundation. Wilfert was wrapping up a four-week
trip to see that the foundation's new $100-million program, aimed
at reducing mother-to-child transmission across all of sub-Saharan
Africa through delivery of the antiretroviral drug AZT, was proceeding
on schedule.
Recalling a recent trip to Botswana, the country, by most measures,
with the worst HIV problem in the world, she mentioned a troubling
belief she'd encountered among matrons in a rural village. "The
perception was that 100 percent of babies acquired infection in
utero," she said. In fact, it's estimated that in sub-Saharan
Africa, only about 25 percent of HIV-infected mothers will pass
infection on to their infants. "Since they knew that you can't
cure infection, they thought, How can one pill cure my baby? You
see a lot of skepticism about the drugs. It's a real challenge
for us."
Wilfert said that after three years in sub-Saharan Africa, the
program had reached about 800,000 women. "That leaves, oh,
about 29.6 million to go.
"But, you have to start some place. And then you just have
to keep chipping away. It'll improve, but you have to be willing
to settle for the best you can do, because you aren't going to
be able to match what you see in the Western world."
Months later, I was back in that Western world, back at Duke, thoroughly
surrounded, once again, by an embarrassment of resources. It was
September, inauguration weekend. Speaking as part of a panel on
global health at the Bryan Center was the director of Duke's Human
Vaccine Institute, Bart Haynes. Haynes, Frederic M. Hanes Professor
of medicine, has devoted his career to the search for an HIV vaccine.
In 2001, at age fifty-four, Haynes visited Africa for the first
time and, for the first time, witnessed the true extent of the
pandemic. "The trip fundamentally changed my view of the world," he
told me. "I saw the effects the AIDS, TB, and malaria epidemics
were having in Africa, and it struck me that the disparity [between
Africa and the U.S.] is too great for our global society to be
stable." Haynes decided to alter his mission. Rather than
continue to work solely on HIV, he resolved to pursue a trivalent
vaccine that would provide immunization against all of the Big
Three: TB, malaria, and HIV. "I wanted to work on those bottlenecks
that have been stumping researchers for years," he said. "I
decided to forego the 'safer' research and to risk failure by tackling
these seemingly impossible-to-solve problems."
That day, Haynes called "inadequate" the response of
pharmaceutical companies and governments to the threat of infectious
diseases. "It has fallen to academic partnerships to develop
an AIDS vaccine," he told the audience. "Universities
should embrace the philosophy of research with service."
And, there again was that phrase: "research with service." It
had been so palpable in Moshi, so glaringly obvious as I watched
Thielman on the wards or Chu caring for the rural sick. Less apparent,
though, was its manifestation on campus. I went looking for its
source; I asked which department was responsible and whose idea
it was in the first place. And perhaps it's a testament to the
campus culture, to an ethos without beginning or end and bound
within no school or discipline, that I found no answers. It is
simply part of the fabric of the place, it seems. And it always
has been.
"Other scientists ask me why I am trying to work on vaccines
that have been so difficult to develop," Haynes told me recently. "And
my answer to them is this: 'These are the greatest pandemics the
modern world has faced. Why are you not working on them?'"
Amani Children's Home (http://www.amanikids.org)
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