Sitting on his traditional stool outside his newly completed permanent house in Kopulio Sub-location in West Pokot County, Lopeyok Syangale recalls how he narrowly escaped death in 2006 after getting infected with kala-azar, or “termes”, as the Pokot call it.
Kala-azar is a disease that is spread by sandflies and is marked by emaciation, anaemia, fever and enlargement of the liver and spleen.
During his sickness, Syangale endured different medications after a series of misdiagnoses. One hospital diagnosed him with typhoid, another malaria. There was even mention of HIV, while the herbalist talked of demons.
“One day the herbalist rubbed some concoction on my neck, I felt as if my skin was on fire. I took off all my clothes and went and jumped into e river,” he recalls.
Since the sandfly disease is closely linked to, and exacerbated by, malnutrition, clinicians had ruled it out because he looked “too fat to be suffering from kala-azar”.
When he was eventually diagnosed with kala-azar at the Kacheliba Level Four Hospital, he was forced to sell all his cattle that had survived an East Coast Fever outbreak to raise Sh30,000 for medication.
Kacheliba Level Four Hospital, the only hospital in the country that treats kala-azar, has a special ward for it. The ward was built in 2008 by the medical charity Médecins Sans Frontières (Doctors Without Borders).
The county’s health department employs the health workers while the drugs are supplied by the Drugs for Neglected Diseases Initiative (DNDi), a non-profit drug research and development organisation.
Meanwhile, the Ministry of Health’s Department of Neglected Tropical Diseases, provides technical support.
The ward has a capacity for 26 patients, but at times accommodates twice that number.
The hospital’s deputy medical superintendent, Michael Makari, says more men than women suffer from the disease.
The hospital admits an average of 17 to 20 patients a month, 70 per cent of whom are men.
A male patient in the ward in his 20s called Tuweiti — he insisted he has only one name — said that after being informed about the disease at the hospital, he suspected he got it from leaning on termite hills while grazing his livestock.
The treatment, from diagnosis to prescription, is complex for both the patient and clinician. Besides, it is also expensive.
The lab technologist at Kacheliba Level Four Hospital, Ronald Ngala, said that after the normal triaging — checking the weight, temperature and other basic information about a patient — blood tests must be conducted to rule out other diseases that present like kala-azar, such as malaria.
And sometimes when the initial tests are not conclusive, it is necessary to perform a spleen puncture, which is a delicate procedure.
These tests alone cost the hospital a minimum of Sh1,500 per patient.
However, some of the clinicians have trained their eyes to spot kala-azar without doing all the tests.
In the ward, clinician Mark Riongota mansplained the “three classical signs” that convinced him that one of the children was suffering from kala-azar.
Little Stella Kwangan had lost weight, her abdomen was distended, and her mother, Chebo Kangwan, told him that she had been running a fever for three weeks.
Ms Kangwan, like 26.4 per cent of the people in this county, according to the Kenya Demographic Health Survey (KDHS), cannot read or write, so the the only estimate she could give for her daughter’s age was a historical moment: “I gave birth to her when Uhuru Kenyatta was being sworn in as president,” she said.
Stella tested positive for kala-azar, so she had to undergo the regimen of two injections a day for 17 days. After the injections, she, and many of the ward’s occupants, are left limping for some time.
“The injections are really painful, they are,” Mr Riongota says.
Until recently, the treatment for kala-azar entailed a rigorous, 30-day course involving the use of a fairly toxic regimen of sodium stibogluconate (SSG).
However, a study conducted by DNDi and the ministries of health in four African countries (Kenya, Ethiopia, Sudan and Uganda) resulted in the development of a combination of sodium stibogluconate and paromomycin (SSG-PM) therapy.
The therapy is not only cheaper, but has also reduced the treatment period from one month to 17 days.
Dr Robert Kimutai, the clinical trial manager at DNDi, says the first trial, which involved 1,000 people, took place between 2003 and 2009, while the major study involving 3,000 people, and which supported the use of the SSG-PM treatment, was conducted between 2011 and 2014.
However, even though it is cheaper, many public health hospitals are cash-strapped and cannot afford the medication. The hospital’s pharmacist, Songio Kosgei, says a bottle of generic SSG costs Sh8,000 and that of PM Sh200. Both children and adults need more than one bottle for a complete course of treatment.
RESEARCH ON NEGLECTED DISEASES
Often blamed for ignoring the suffering caused by neglected diseases, pharmaceutical giants such as Novartis have engaged in research on kala-azar and other neglected diseases.
In September, a report in the journal, Nature, said researchers had tested three million compounds made by Novartis in search of one that could kill multiple parasites.
After human trials, the new drug could cure three diseases which affect 20 million people and kill 50,000 each year, according to WHO estimates: Sleeping sickness, also known as Human African trypanosomiasis, which is common in sub-Saharan Africa and results in a coma when the parasite penetrates the brain; chagas disease, or America trypanosomiasis, which causes the heart and digestive system to become enlarged and can be fatal, and kala-azar.
Evidence shows that, while WHO’s tagging of 17 tropical diseases as neglected might not have any clinical or scientific relevance, it has placed diseases such as kala-azar on the global discussion table alongside killers like tuberculosis, HIV and malaria. In fact, funding for these diseases has increased.
The Bill and Melinda Gates Foundation dedicated some $114 million (Sh11.5 billion) to neglected tropical diseases in 2006 while the US Agency for International Development (USAID) committed $212 million (Sh21.4 million).
ILL-INFORMED AND IMPOVERISHED PUBLIC
In Kenya, government efforts are hampered by an ill-informed and impoverished public.
The creation of the Department of Neglected Tropical Diseases in 2012 signified the country’s move towards tackling kala-azar and the other 16 neglected diseases.
“We still need the public educated on these diseases so that they know how to protect themselves using very simple methods as well as when to seek treatment,” said Dr Sultani Matendechero, the head of the Department of Neglected Tropical Diseases in the Ministry of Health.
Meanwhile, Ministry of Health Principal Secretary Nicholas Muraguri decried the attitude of the sufferers: “These diseases are normally ‘disenablers’, not killers, so people do not see the urgency in seeking treatment.”
The country has made commendable efforts, given that in September more than 200 researchers from Africa and Japan gathered in Nairobi for a two-day symposium “to explore research in the fight against NTDs”. The kala-azar task force held their first meeting in August.
Why kala azar is common in West Pokot
Kala azar, another name for visceral leishmaniasis, is caused by blood-sucking sandflies.
The sandflies transmit a virus that attacks the internal organs and eventually leads to life- threatening or fatal anaemia after it has destroyed the red blood cells.
Patients look physically wasted, have distended abdomens and experience bouts of fever.
If left untreated for more than two weeks, it can kill.
The World Health Organisation (WHO), which classifies the disease as “neglected”, says that it is endemic in East Africa. WHO created the Department of Control of Neglected Tropical Diseases in 2005.
India has the world’s highest infection rate, followed by Sudan.
The label “neglected diseases” poses a dilemma for the government, which has to choose whether to spend the little money to treat the better known killers such as malaria and HIV, or whether to channel it towards the neglected diseases
In fact, medics wonder whether there is any democracy in determining the value of human life since the tens of thousands who die of infectious diseases are often taken more seriously than the hundreds who die of neglected diseases.
The burden — how much it is taking from the economy in terms of hospital stay and medication cost, or the number of people it kills — of kala azar is still unknown.
“As at now there is no data. We only know kala azar affects West Pokot, Turkana, Baringo, Samburu and Gilgil,” says the head of Neglected Tropical Diseases in the Ministry of Health, Dr Sultani Matendechero.
Kala azar, WHO says, occurs in rural areas 600 metres above sea level with heavy periodic rainfall and humidity of above 70 per cent.
In West Pokot, kala-azar is an oxymoron. It thrives under the very conditions that make the county so beautiful.
Mr Michael Makari, the deputy medical superintendent at Kacheliba Level Four hospital — the only hospital that treats kala-azar in the county — says that the geography of West Pokot makes it vulnerable to the disease.
It is rugged and remote. A drive through the county is like taking a step back to precolonial Kenya. Most of the houses are grass thatched and the people mostly wear the plaid tartan fabric commonly known as the Maasai shuka.
The place is dotted with reddish brown termite mounds, around which the local people wait for the insects, which they eat.
But things are slowly changing. They are leaving the makeshift manyattas for permanent structures. However, that necessitates sand harvesting, which loosens the soil on which sandflies thrive.
There is also a zoonotic angle. The fact that humans share their dwellings with animals such as goats also increases interaction between sandflies and humans.
There is no vaccine for kala azar yet.
No money can make up for my relationship with the local folks
Mr Mark Riongota, a clinician at the Kacheliba Level Four Hospital in from West Pokot is acutely aware of the problems at the institution. Like many other public facilities, it runs out of medication, has a severe shortage of healthcare workers — although the county government hired a few just weeks before DN2’s visit — and often lacks basic health supplies. He knows that healthcare has become a business, with doctors going into private practice to earn more because public hospitals do not pay enough.
However, has chosen not to take that route. He has established such a good rapport with the local people that he cannot imagine leaving West Pokot for greener pastures. Even though he is not a gynaecologist, nutritionist or counsellor, they seek these services from him because they trust him. “Theycall me about small stuff at the hospital, like they do not like the way the food was cooked on a particular day, or how a certain nurse looked at them, and other issues that might seem extremely petty but which are important to them,” he says.
“They trust me because they know there is no day they will come here and find me missing,” he adds.
He has also become an expert on kala azar and has trained many healthcare workers in the arid and semi-arid areas on how to manage the condition.
And as he does the ward rounds, he stops by a bed, engages the patient in conversation in the Pokot language that ends up in hearty laughter.
Along the way towards Kopulio Village, he is stopped by villagers extremely grateful that “he saved their lives after years of suffering”. This respect and gratitude he says, is the driving force in his career, which no amount of money can trump.