Above the clouds: halfway up Mt. Kilimanjaro. Chris Hildreth
Above the clouds: halfway up Mt. Kilimanjaro. Chris Hildreth

The Woes of Kilimanjaro

"Research with Service," the guiding ethos of global health at Duke, is driving efforts to fight HIV/AIDS in a small town in Tanzania.
Writer: 
January 31, 2005

On the May morning I visited the Kilimanjaro Christian Medical Center in Moshi, Tanzania, Na-than Thielman M.D. '90, an epidemiologist and associate professor of medicine at Duke, was on duty in the HIV Clinic. He had arrived the night before on the 9:00 flight from Nairobi and by 7:00 a.m. was already seeing patients in a room the size of a coat closet. Crammed into the space was an examination table, bookshelves, a desk, and two wooden chairs in which, all day long, one patient after another would describe the symptoms of an illness.

Most were, by Thielman's reckoning, very serious, but all were very treatable: chronic diarrhea, measles, meningitis, thrush, pneumonia, malaria, and tuberculosis. Any of them, Thielman said, could be completely warded off. Any, that is, for which the right drugs were available.

Late in the morning, a slender, feeble-looking man in his early thirties sat down with his wife, who had helped him in. "He is confused sometimes," the wife told Thielman through a Tanzanian nurse-translator. "And his neck is hurting." Thielman looked at the man, eyes squinting behind his glasses, and then his face lit up. "Jambo, Freddy!" he said. "Hello." He took the man's hand. "Habari?" (How are you?)

Thielman recognized him from a previous visit, around three months ago, he thought, although he couldn't say for sure. The trips had begun to blur together. He remembers, of course, like it was yesterday, his first--in 1992, as a resident, fresh out of medical school, wide-eyed and disbelieving. He remembers the overcrowded wards, often two patients to a bed, and how, during morning rounds, you had to be careful not to step on the ones sleeping on the floor in between.

Freddy (patients' last names have been omitted to protect their privacy) gave him a weak smile. "Nzuri" (Good), he said. But he wasn't. His anti-HIV drugs had run out, his wife explained. And his cryptococcal meningitis, a deadly fungal infection of the spinal cord, seemed to have returned.

Collaborative medicine: Thielman, center, analyzes patient histories with visiting doctor from West Africa

Collaborative medicine: Thielman, center, analyzes patient histories with visiting doctor from West Africa. Chris Hildreth

 

Thielman recalled that when he'd found the meningitis he'd prescribed a daily dose of Fluconozol, an anti-fungal medication. "Are you still taking the Fluconozol?" Thielman asked him. The nurse translated. Freddy shook his head. "Why not?" Thielman knew that when patients stopped taking their anti-retroviral drugs, the response was invariably that they couldn't afford them any longer. Even the least expensive anti-HIV drug, Triomune, a generic medication manufactured in India, costs $270 a year, about three-quarters of Tanzanians' average yearly income. But Fluconozol was free. "Right?" said Thielman to the nurse, "It's free, isn't it?" She thought for a moment. "Oh, yes," she said. "But it is--" she searched for the phrase, "out of stock."

Tanzania, like its sub-Saharan neighbors, is a land of limited resources and extreme poverty, and perhaps nowhere is the deficit more striking than in the state of the nation's health care: one doctor for every 25,000 Tanzanians; 30,000 hospital beds for an HIV-infected population of nearly two million.

There is, however, one resource Tanzania is not short on. Among the 200,000 inhabitants of Moshi--a town that has seen, since the mid-1980s, both the rapid spread of AIDS and the rapid decline of a standard of living--among the hawkers of cashews and cigarettes, the woodcarvers and the coffin makers, the taxi drivers and the tour guides, the sidewalk seamstresses and the shoe shiners and the sex workers and the money changers and the Maasai robed in red shukas who roam the city like ghosts, one more group has emerged. Recently, people from a place called "Duke" have been showing up all over town.

In 1985, just as AIDS was beginning to ravage sub-Saharan Africa--approximately a million new infections a year at the time--Duke's first chief of infectious diseases, David Durack, sought to establish a base for research of tropical diseases in the developing world. After a thorough search, Durack settled on Tanzania. "It was English speaking, it had a history of relative stability, and we had one fellow who'd already been there before."

That fellow was Gunter Lallinger, an infectious-diseases specialist and, for seven years, the mainstay of Duke research activities in Tanzania. Together, the two embarked on a collaboration with Muhimbili University, the country's only medical school at the time. "We had no facilities of any kind. No external funding. We were truly starting from scratch," said Durack. "But when Dr. Lallinger and I made our survey visit in the winter of 1986, Halley's Comet was showing in that enormous African sky. We had heard that this was a good omen."

It was. With the aim of exposing Duke faculty members to the health-care environment of a developing nation, where they would conduct research in HIV/AIDS, malaria, and tuberculosis, Duke began building a modest presence in the country. Although the number of full-time faculty members in the division was never more than twelve, according to John Hamilton, chief of infectious diseases since 1994, it was the seed of Duke's commitment to the field. "Before 1980," he said, "you could count the number of major medical centers involved in international health on one hand." Duke was not on the list, he added, "but we are now."

By the early Nineties, research activities had moved to Kilimanjaro Christian Medical Center (KCMC) in northern Tanzania, home of the highest peak on the continent and the highest rates of AIDS cases in the country. There, an educational component was added. The AIDS International Training and Research Program offered a three-month rotation at KCMC for Duke residents and training in research methodology at Duke for Tanzanian colleagues. The former provided residents with a rare opportunity, offering, as few medical schools did at the time, an international rotation. But it was the latter, as Hamilton saw it, that would add a vital human component to the mission of building infrastructure in the region. At Duke, Tanzanians would learn how to care for patients infected with HIV, the most advanced methods of clinical research, and the "survival skills"--writing a grant proposal, publishing research results, and drafting a budget--basic to a successful career.

Durack remembers when the first fellows arrived: "Two young doctors got off the plane completely dazed. We took them to the supermarket. They were stunned. We told them, 'Go get whatever you need.' They brought back a packet of coffee and a packet of rice." To date, fourteen Tanzanians have received training at Duke and more than 200 Duke students, residents, and fellow have worked in Tanzania.

It was an arrangement with an unusual emphasis on reciprocity, 
the service end of a "research-with-service" ethos central to Duke 
efforts and yet at odds with prevailing practice. "The model that we 
invoke is not like a lot of the research in international settings," 
Thielman, the Duke epidemiologist, told me as we walked through KCMC's wards. "Too often, U.S. investigators parachute in, grab
the blood, if you will, and helicopter out. And they leave very little
capacity in the developing country."

As Thielman spoke, the steady clamor of a construction crew
echoed through the hospital halls. Outside, workers were putting
the finishing touches on a much larger, Duke-funded HIV clinic,
aimed at attracting entire families for treatment at the same time.
"We want to have a presence here. Not just with machines and technology," he said, gesturing toward the clinic, "but with the 
training that will sustain this sort of work."

In the nearly two decades since the collaboration's inception in Tanzania, the division of infectious diseases at Duke has grown 
in size and stature: Its faculty has more than doubled; it's moved
into the ranks of the top ten programs in the country; and its once-
meager financial support has ballooned with major federal
funding. Last August, in a move that signaled Duke's arrival at the forefront of the field, the National Institutes of Health awarded the 
medical school a $4-million grant for the study of AIDS co-infections
in Tanzania, among the largest ever given for such work.

John Bartlett, professor of medicine and, until recently, director of Duke's infectious-diseases clinic, is principal investigator on 
the co-infections study in Moshi. He's been traveling to the region, alternating with Thielman every three months or so, for the past ten years. When I met him in his office at Duke last April, he was still jet-lagged from a recent trip, and I asked him why going there was so important--why the research can't be done here.

"It's important," he said, "because the geographic manifestations of disease vary greatly. Take, for example, HIV. A principal manifestation of HIV in a resource-limited environment is tuberculosis. Since you rarely see tuberculosis in the United States, you have to go there to study it." And so, he said, "We might test a specific drug in patients. Or we might follow patients over time to understand the clinical manifestations of their disease. But the research doesn't serve to help Tanzanians unless it's done in Tanzania."

Measuring up: Carl James '03, a Hart Fellow, checks the height of an orphan at Fukemi Primary School

Measuring up: Carl James '03, a Hart Fellow, checks the height of an orphan at Fukemi Primary School Chris Hildreth

 

That was the clinical reason. Then Bartlett gave what he calls "the big picture" reason: "Less than 1 percent of the world's population that needs treatment has access to medications; eight to nine thousand people die a day of AIDS; and we have in our hands the tools to prevent it. That," he said, "is not acceptable." Bartlett's voice grew even more impassioned as he described what I would encounter at KCMC: the 40 percent of patients on the wards who are HIV-positive; the mortuary at the back of the hospital where a brightly decorated truck is loaded, at dusk, with the day's corpses, and where family members dressed in white begin the funeral procession to the graveyard down the street.

It was scenes of suffering like these that moved Thielman and Bartlett in 2001 to expand the DUMC-KCMC collaboration. They set out to identify places in the region conducive to the sort of clinical trials that would achieve their two priorities: producing meaningful research and directly aiding the desperately ill.

They went first to the Kibongoto National Tuberculosis Hospital, where more than 75 percent of patients are infected with both tuberculosis and HIV. (Tuberculosis is estimated to be responsible for half of all AIDS-related deaths worldwide.) Relying in large part on John Crump, an assistant professor of medicine and Duke's only epidemiologist residing in Moshi, Thielman and Bartlett proceeded to set up a trial at Kibongoto evaluating a new anti-HIV drug regimen. The study, sponsored by GlaxoSmithKline, provided medications for more than seventy patients.

As the Kibongoto trial got under way, the Duke team was approached by a woman named Dafrosa Itemba, a Tanzanian who heads an organization called KIWAKKUKI (the Swahili acronym stands for "Women Fighting Vigorously Against AIDS in Kilimanjaro"), for help in developing an HIV testing facility for her clinic. Thielman and Bartlett obliged, soliciting funding for the construction of the laboratory space and the purchase of equipment, and months later the service was up and running. But they didn't stop there. KIWAKKUKI, they realized, could be a valuable partner. It was, after all, the only organization delivering care to the sick in a way that hospitals like KCMC and Kibongoto weren't. The all-volunteer staff was taking it to them in their homes--wherever that might be.

Stephen lived in Majengo district, a five-minute drive from the center of town, in a complex of dirt streets and banana trees and crude huts. Barefoot children in rags skittered about. A group of men crowded around a billiards table in the shade, drinking cups of the potent local brew. They looked up as the KIWAKKUKI van rumbled by. Inside, Helen Chu braced for bumps in the road.

A third-year Duke medical student, Chu had come to Moshi on a Fulbright scholarship the previous fall. For the past six months she had been conducting research under Thielman and Crump on two of KIWAKKUKI's core services--home-based care and voluntary counseling and testing--while helping to administer both.

Chu cautioned me not to present her as a medical expert, and by degree requirements, of course, she is not. But to the HIV-infected patients she treated in the slums or the rural villages outside the city, Chu was the closest to a doctor most had ever seen. That she wore a stethoscope and carried a penlight was itself a source of comfort, and comfort, she said, was the real point of the trip. Without antiretroviral drugs, care for the HIV-infected, she told me, "is largely a matter of easing the pain."

When we arrived, Stephen, who looked to be about thirty, was lying on a mat in the dark of his single-room shack. His sister stirred a pot of ugaali, a staple dish of ground corn, over a fire outside. In preparation for our visit, four plastic chairs had been set up in a semi-circle as though for a morning tea and chat. But instead of tea we'd brought antibiotics, and rather than chat, Chu mostly listened.

She sidled up to him, putting her head close to his chest and a hand on his back, and asked him to take deep breaths. "He's wheezing," Chu said. "That could be pneumonia." She turned back to Stephen. She asked him what was hurting and for how long, and he answered in whispers. Before we left, Chu gave him Septra for his diarrhea. "Take one a day, three days a week," she told him. Lightness Kaale, a nurse practitioner at KIWAKKUKI, translated. And then we prayed. "It's amazing how much simply praying with them helps," said Chu. "You leave, and they're smiling."

At KIWAKKUKI, Chu contributed what Thielman calls "groundbreaking research" to an issue at the heart of global health, no small feat for a med student conducting her first study in the field. The issue was testing, and as with any number of prevention or treatment efforts, talk of strategy had become mired in talk of "cost-efficiency" and "sustainability," all revolving around a single dollar: the price of an HIV test.

For three months, Chu studied the effect of the cost of an HIV test on client volume at KIWAKKUKI. First, she offered the test for a dollar, then briefly for free, and then for the dollar fee again. "What we found, at first, was that more clients presented when testing was offered for free than when offered for a dollar, indicating that cost may be a significant barrier," she recalled. "After we bumped it back up to a dollar, though, we had fewer clients presenting, but we sustained a much higher number than before the free period. So I think we showed--and I think policy changes should reflect this--that if you can't make testing free indefinitely, if you provide it for just a window of time, you ultimately get a significant increase in participation."

Place to play: Mane, left, and Kalisti, two orphans at Amani Children's Home

 Place to play: Mane, left, and Kalisti, two orphans at Amani Children's Home, founded by Valerie Johnson '02, below. Chris Hildreth

 

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.

Valerie Johnson '02

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."

House calls: Duke medical student Helen Chu checks a patient's vital signs

 House calls: Duke medical student Helen Chu checks a patient's vital signs 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?'"