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The Patient Becomes the Healer
November 9, 2012
This article is part of the Fall 2012 issue of the MSF Alert newsletter.
South Sudan 2012 © John Stanmyer/VII Photo
Three decades ago, when Francis Gatluak was a boy, civil war forced his family to flee their small village in Unity State, in the northern reaches of what is now South Sudan. They relocated to another village, Bao, where Francis’ older brother became a nurse. Later, he went to work in the town of Leer, about a day’s walk away, in a primary care clinic run by MSF.
Merely surviving in the midst of a fierce and often bloody conflict was a notable achievement. But in the late 1980s, people began coming to the Leer project close to death, thin, weak, and in pain. Health workers did not know what was happening. These weren’t war wounds, but the condition was killing people.
Francis’s brother soon fell ill as well and was treated with typhoid medication. Francis went to Leer to take care of him, taking him home when he started to feel better. But Francis’s brother soon took a turn for the worse, and Francis and another man carried him back to Leer on a narrow wooden bed—an exhausting three-day journey. His brother, however, died soon after they arrived.
After walking back to Bao, Francis, too, began to feel sick. “My body was hot, I had fever, and after a while, I felt like I had something growing in my stomach,” he recalls. “They gave me traditional medicine, but it was not helping. So I said, ‘Okay, I don’t need to be like my brother,’ waiting until he was too weak to go to the hospital. I started walking to Leer.”
Eighteen other sick people walked with Francis. At this point, in 1989, MSF was testing for a little known disease called kala azar, a disease that thrives in poor, unstable areas with limited health care. Known to scientists as visceral leishmaniasis, kala azar is spread by the bite of a sandfly. Its symptoms include an enlarged spleen and fever. Patients often seem to be wasting away physically.
Unity State was then a perfect breeding ground for kala azar. A famine had left people particularly vulnerable to illness, and waves of displaced people with no natural immunity to the disease were moving into the area—both results of Sudan’s civil war. At the time, though, MSF could not carry out the diagnostic test in Leer. Blood samples were sent to a lab in Nairobi and it took a month to get results. Francis’s first test for kala azar came back negative, but a second sample came back positive—two months after he had arrived. Most of the people he walked with to Leer did not last as long. “We were 18 people, and 15 of them died before they got any medication,” he says.
“In other instances, entire families were sick. In one village, 90 percent of the people tested were diagnosed with kala azar.”
When Francis got his diagnosis, however, he was able to start treatment: two painful daily injections of sodium stibogluconate (SSG) for 30 days. Developed in the 1930s, this treatment is toxic enough to kill some patients, but it was all that was available at the time. In 2002, MSF began treating patients with a 17-day combination regimen of SSG and the drug paromomycin, which was safer and more effective. Despite its advantages, though, and its suitability for treating the strain of kala azar found in East Africa, this protocol is not safe for severely ill or elderly patients or pregnant women. Instead, those patients—and people coinfected with HIV—are given an intravenous treatment of liposomal amphotericin B, which is more effective for this cohort and much less toxic. It’s also very expensive, however, and better suited to the strain of kala azar in India, which restricts its wider use in South Sudan.
Francis endured the difficult SSG treatment and recovered. Since he spoke some English, the staff asked him if he would stay and work with them as a translator. He did this for a few months, developing a desire to do more. “I started to learn about how I can help the patient,” he says. “If there are people who can give medication, I can also help to do the job, and help the community.”
He began assisting with treatment and learning to provide care, then took another bold step that wound up saving many lives. “At the treatment center in Leer, there was no one who was from Leer,” he recounts. “I knew that all the patients came from the area that I came from.” Nearly all the cases in Leer, and hundreds of other displaced people treated by MSF, hailed from a famine-stricken area called Duar, near Bao. Francis urged MSF to go to Duar and provide treatment there. MSF agreed to send an exploratory team. Francis went with them.
“I was not really thinking to be a medical person...But after all of the death I saw and after my treatment, I felt that this is the most important thing that I can now do.”
“We went and found some homes where there was nobody,” he says. “Sometimes, we would find only skeleton bones.” In other instances, entire families were sick. In one village, 90 percent of the people tested were diagnosed with kala azar.
The epidemic in Unity State lasted from 1984 to 1994 and claimed more than 100,000 lives, one-third of the area’s population. Francis’s initiative spurred MSF to establish a clinic in Duar in 1990, where around 10,000 people were treated for kala azar in the first year alone. MSF treated a total of 19,000 patients with kala azar in what is now South Sudan between 1989 and 1995, and in the years since, MSF has continued both to work and advocate on behalf of kala azar patients, people suffering from what’s known as a “neglected tropical disease” that could still greatly benefit from new medications and diagnostic tools but is often ignored by research and development.
Francis also stayed connected with MSF. Today, in fact, he is a nurse in his twenty-third year working with the organization. He has gone on MSF assignments in other African countries and recently returned to the Leer hospital, where he is now in charge of the tuberculosis ward. And he recently traveled to Washington, DC, to speak on the organization’s behalf when MSF was awarded the highly-esteemed 2012 J. William Fulbright Award for International Understanding.
Even among the many dedicated people working for MSF, his story is exceptional, a journey born of the hardship he both witnessed and experienced. “I was not really thinking to be a medical person,” he said. “But after all of the death I saw and after my treatment, I felt that this is the most important thing that I can now do.”