Photo credit, Kang-Chun Cheng
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- Author, Kang Chun Cheng
- Role, BBC News
As a child, he survived the world’s second deadliest parasite. Today, he fights against this unknown killer from his motorcycle.
Andrew Ochieng puts on his helmet and gets on his trusty motorcycle. It is equipped with screening kits and has decades of experience. For years, Ochieng has crisscrossed the vast rural expanses of the border region between Kenya and Uganda, on a mission to stop a terrible, even fatal, disease. Few have heard of visceral leishmaniasis, known locally as kala-azar, or the devastation it can wreak.
But Ochieng knows it well: he survived it. “I was really, really sick,” he says, recalling his own experience. His fever lasted for weeks. “As if I had been crushed by a heavy weight,” he adds. He was around 12 years old at the time.
Ochieng’s parents and neighbors had no idea of his illness. They took him to see a traditional healer who cut his stomach with a razor blade, then smeared it with burnt camel and cow excrement. He also gave him bitter herbs to eat. Eventually he received medical treatment. But he still remembers the pain. At the hospital, Ochieng received sixty injections over a period of almost two months. Even today, he bears the scars of this traditional healing ritual on his chest.
Driven to prevent others from going through the same ordeal, Ochieng now works as a community mobilizer for the non-profit Drugs for Neglected Diseases Initiative (DNDi).
More than 600 million people worldwide are at risk of contracting visceral leishmaniasis, with the vast majority of cases (73% in 2022) concentrated in East Africa. This disease remains poorly understood and relatively unknown outside of the disadvantaged communities it affects. Parasitic disease, it is in reality the deadliest of parasitic diseases, with the exception of malaria.
It is estimated that between 50,000 and 90,000 cases of visceral leishmaniasis occur worldwide each year, but only 25 to 45% of these are reported. This disease, transmitted by sandfly bites, causes fever, weight loss, hepatomegaly and splenomegaly, and can progress to psychosis or even death. The term “visceral” refers to its effects on internal organs, notably the liver.
Visceral leishmaniasis has a mortality rate of 95% if left untreated. It is also a disease that particularly affects children. According to the World Health Organization, half of the cases recorded in 2022 concerned children under 15 years old.
It is crucial to note that current treatments for visceral leishmaniasis are painful and toxic, similar to chemotherapy for cancer patients. Patients typically receive two injections per day for at least 17 days in a hospital setting, for a total of 34 injections. Scientists are looking for less invasive solutions and ways to educate people about the disease, in hopes of reducing the number of people infected.
Ochieng is participating in this effort. In the village of Akorieya, a 20-minute drive north of Amudat in northeastern Uganda, he sets up his workstation under an acacia tree where men gather every day to drink milk tea.
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Photo credit, Kang-Chun Cheng
Akorikeya is home to a few hundred inhabitants. He begins by assessing the appearance and energy level of the villagers, paying particular attention to the children. He then examines each person’s lower left torso for an enlarged spleen, one of the hallmark symptoms of visceral leishmaniasis.
People who have symptoms, including joint pain, intermittent fever and nosebleeds, have a rapid RK39 test, which uses antibodies from a drop of blood and gives a result in 10 minutes.
Ochieng also carries rapid HIV tests with him, as immunocompromised people are particularly vulnerable to the disease. (An HIV-positive patient is 100 times more likely to develop visceral leishmaniasis).
“From September to February, there is an increase in cases of visceral leishmaniasis,” explains Ochieng.
“The short rains during this period encourage the nesting and hatching of sandflies,” he explains.
Normally, he can visit up to 16 villages per month. He checks in on former patients, hoping they haven’t relapsed, or investigates reports of new cases.
The arid lands of this region are the ancestral home of the Pokot people, who travel back and forth between Kenya and Uganda to water and feed their livestock. They sometimes cover more than 50 km on foot per day. As a result, monitoring patients with kala-azar leukemia is complex for Ochieng.
“Sometimes, when I go back to see a patient, I find that they have moved,” he says.
His investigation then begins: he questions his neighbors to find out where a person has gone and what time they left. With some leads, he gets back on his motorcycle and sets off in search, looking for a human being wandering somewhere in this barren and extraordinary landscape.
Photo credit, Kang-Chun Cheng
Although the transmission of visceral leishmaniasis can be attributed to sandfly bites, socio-economic factors also influence its spread and impact.
“Visceral leishmaniasis only affects the poorest of the poor – those who are chronically malnourished and sleep in places without concrete floors,” explains Joy Malongo, head of access to care at DNDi.
Lack of access to health care, adequate nutrition and proper sanitation, as well as population displacement, contribute to the increase in cases of visceral leishmaniasis.
Research suggests that environmental factors such as irrigation systems, deforestation and climate change increase relative humidity and temperature, thereby promoting the proliferation and development of sandflies.
When Ochieng finds someone with visceral leishmaniasis, he often takes them to Amudat Hospital in northern Uganda, near the Kenyan border, on the back of his motorbike.
When I go to the hospital myself, I go there early in the morning. It’s barely 5 a.m., but Priscilla Chebjira, the head nurse at Amudat Hospital, has already prepared daily treatments for the 34 patients at the kala-azar treatment center.
Photo credit, Kang-Chun Cheng
Dressed in a candy pink uniform, Chebjira and her colleague push a cart loaded with injections – mainly mixtures of sodium stibogluconate (SSG) and paromomycin (PM) – into the first of two wards. Patients, from infants to adults, stir under the mosquito nets that cover each bed.
The need for improved interventions is acute. Many sick young patients are accompanied by their mothers, while some of their guardians are barely teenagers. While the nurses roam the beds, performing injections on the patients’ bare buttocks, the youngest cannot hold back their cries of pain.
Patrick Sagaki, a doctor and medical director of Amudat Hospital in Jinja, at the mouth of the Nile, has been treating patients with visceral leishmaniasis since his arrival in 2007. At the time, he was the only doctor in the region specializing in the disease. “I saw a real need,” he explains.
But he knows many other cases never receive adequate care. The remoteness of West Pokot County in Kenya and the Karamoja region of Uganda makes it difficult to identify cases. Additionally, active searches are costly. “Without DNDi, we probably wouldn’t be able to reach most of these Pokot,” says Sagaki.
Pokot men prefer to sleep outside, but this makes them more vulnerable to sandfly bites. Additionally, villagers are generally reluctant to destroy anthills where sandflies breed, because they feed on termites during the rainy season.
Photo credit, Kang-Chun Cheng
Sagaki doesn’t have access to all the treatments he would like. Liposomal amphotericin B (L-AmB), the first-line treatment for visceral leishmaniasis in India, poses logistical storage and administration challenges in many parts of East Africa because it must be kept refrigerated and administered intravenously.
In the region, L-AmB is a second-line treatment, provided by Gilead, an American biopharmaceutical company, to WHO through a donation program; countries do not obtain it directly for the treatment of visceral leishmaniasis.
In Kenya and Uganda, the current standard treatment is a 17-day combination of SSG and paromomycin (PM), which replaced the previous 30-day SSG treatment in 2010. Although this shorter regimen represents progress – combination therapy is generally more cost-effective and has a lower risk of developing parasite resistance – it still includes SSG, meaning that life-threatening side effects on the heart, liver and pancreas persist.
Children are generally excluded from clinical trials investigating treatments for neglected diseases like visceral leishmaniasis. A 2019 study found that of 360 clinical trials for neglected diseases, only 17% included people under 18.
In 2018, DNDi launched an open clinical trial of a new treatment: miltefosine (MF) combined with paromomycin (PM). During the approximately two-year trial, 408 patients across seven sites in Kenya, Uganda, Sudan and Ethiopia received either SSG and PM or MF and PM. Many children participated in the trial; the median age of participants was 11 years.
After six months, both treatment combinations demonstrated high effectiveness, above 91%. However, the MF and PM option was found to be easier for the patient to bear, requiring one less injection per day, a shorter treatment of three days, and having fewer risks associated with SSG, such as heart damage.
But despite improving treatments, the harsh reality is that reinfections may be inevitable, according to Malongo. “It all depends on where the patients return and whether their lifestyle improves. If they return to their initial living conditions, nothing will change.”
Photo credit, Kang-Chun Cheng
Sagaki still sees patients arriving too late or showing signs of traditional healing practices. But he also knows that former kala azar patients recognized symptoms in people in their community and then referred them to Amudat Hospital.
Kenya experienced serious outbreaks of visceral leishmaniasis in 2020 and 2022, and almost four million Kenyans are estimated to be at risk of infection with this disease during such outbreaks.
Sagaki, however, says that elimination of visceral leishmaniasis is possible with appropriate interventions. “Take the example of Bangladesh,” he says. “Cases are diagnosed very quickly and access to treatment is easy. The local population knows much more about visceral leishmaniasis than Ugandans and Kenyans.”
Among the people I meet on my trip with Ochieng is Chemket Selina, now a mother of four. As a child, she contracted malaria and typhoid, but when she was overcome by intense fatigue and high fever for more than a month, no one knew what was wrong until Ochieng came to diagnose her.
He transported her on the back of his motorbike to Amudat Hospital, about 20 km (12 miles) away.
Today, she worries about the health of her children. She is around twenty years old, but does not know her exact age. In this region of the world, we rely more on rainfall than on calendar years. Either way, she looks older than she is. In Pokot culture, women carry out all the essential responsibilities of life, from giving birth to providing water, building houses and preparing meals.
Photo credit, Kang-Chun Cheng
Ochieng notes with relief that her four young children all appear to be free of the disease. But the risk of visceral leishmaniasis and health problems worsened by poverty remains constant.
Selina’s family only eats once a day, in the morning: tea, ugali (corn porridge) and sokoria leaves, which she picks from a tree. Selina boils them, purees them and then fries the mixture. “We eat what we find,” she says, her young child clinging to her.
She still remembers the painful injections she received years ago. But, for her, that’s what made them more effective than any other medication. Here, according to Sagaki, it is common to think that pain is the best way to fight illness.
