Poron Lokoler talks with pride about one of the activities that make him a man in the Pokot community in Kalemrekan village in Kenya.
Like many boys of his age, graze herds of cattle. When it is dry in Kenya, Poron and his age mates cross with the cattle into Uganda to look for pasture.
When I met him, he was wearing a t-shirt with the words “This is my hangover t-shirt” boldly printed on his chest. Poron escaped death by Visceral Leishmaniasis, also known as kalaazar or black fever.
Kalaazar is transmitted through the bite-infected female sand fly. The sand flies thrive on cattle and their dung—the very things that Poron lives for.
Kalaazar is one of the 18 diseases that the World Health Organisation classified as “Neglected Tropical Diseases (NTDs) because governments and healthcare systems pay little attention to them.
In Kenya, Kalaazar threatens more than 600,000 people inhabiting Turkana, West Pokot, Baringo, Isiolo, Baringo, Marsabit and Wajir, according to the head of Neglected Tropical Diseases at the Ministry of Health Dr Sultani Matendechero.
Many are not as lucky as Poron. Several factors are behind this.
First is the access to care:
In Uganda, there is only one hospital where kalaazar is treated—Amudat Hospital in Amudat District in Eastern Uganda—and in Kenya there is Kacheliba and a clinic in Baringo County.
At Kacheliba, the medical superintendent Solomon Turkei says that patients travel from as far as 400km away seeking care even from across the border when symptoms—severe fever for more than two weeks, weight loss and fatigue, swelling of liver and spleen—set in.
Eunice Chemanang’ travelled with her two children from Akulo at the periphery of Baringo-West Pokot County border. A mother of three, who can only afford one meal a day, the journey to save her son’s life impoverished her even more because she had to part with $17.
“I walked for about four hours to Akorekwang’ then paid Ksh200 ($2) from Akorekwang’ to Sigor, and then Ksh1,500 ($15) from Sigor to Kacheliba on a motorcycle,” she explained.
At the hospital, the mother’s countenance is fallen for other reasons as well: “I left two of my other children at home, and I cannot stop wondering whether they ate at all this evening.”
Eunice cradles her other healthy son with whom she came to the hospital, she continues: “I feel a knife cut across my stomach when the doctors are treating him, but I know it is important to help him live.”
After the treatment is over, Eunice does not know where she will get fare for the journey back home.
They are at a special ward for kalaazar at the facility. By August 17, there were 21 patients in the ward.
In 2018, the ward admitted 272 patients, who travelled from as far as Tiaty, a whole day’s journey to the hospital. By August, they had admitted about 170 patients.
Outside, just after the morning rounds the children come out limping and crying from the pain of the injections. “The injections are very painful, for 17 days,” said Mr Turkei.
The drug used to treat Kalaazar in Kenya, Ethiopia, Sudan and Uganda is called Sodium Stibogluconate and Paromomycin (SSG-PM) therapy.
It was developed by the ministries of health in these countries and Drugs for Neglected Diseases initiative (DNDi), a global non-profit organisation developing new treatments for neglected diseases.
Fairly toxic medicine
Before SSG-PM, patients endured a 30-day course involving the use of a fairly toxic regimen of Sodium Stibogluconate (SSG) alone, until the SSG-PM reduced the days to 17 days.
DNDi has funded the treatment of kalaazar from 2008, taking over from Médecins Sans Frontières, an international medical humanitarian organisation.
A bottle of generic SSG costs Ksh 8,000 ($80) and that of PM Ksh200 ($2). Both children and adults need more than one bottle for a complete 17-day treatment, estimated to cost of about $400 a person.
According to Mr Turkei, SSG-PM cannot be administered to the elderly, expectant women, people with HIV, and those who were treated for the disease and relapsed.
For this group, there is a safer but more expensive drug: AmBisome, also supplied by DNDi with occasional support from WHO.
AmBisome is estimated to cost about Ksh2 million ($20,000) per patient.
Due to the toxic nature of the treatment, the diagnosis is as thorough and life threatening as it is expensive.
Dr Turkei explains: If the patient came to the facility complaining of protracted fever, there is an initial rapid test which will be followed by a direct agglutination test to tell whether the cause of the anaemia is due to attacks on the red blood cells.
In certain instances, the patients may undergo a final test, that involves a spleen or bone marrow aspirate. This is where the fluids are pulled from the spleen or bone marrow: A miss can puncture the spleen, and kill the patient.
On my visit, the hospital had run out of blood, and a little boy who had become anaemic had to be ferried 80km to Uganda for the blood.
So he waited while impatiently, calling every now and then to inquire where the driver of the only van was so that it could take the boy to Amudat.
While Turkei is worried about what he will use to treat his patients, Dr Matendechero fears that lack of funding impairs healthcare workers ability to pick kalaazar apart from brucellosis, malaria and other diseases that mimic it.
“The lack of attention paid to the diseases has also had clinical implications where healthcare workers are taught in school in passing, and therefore misdiagnose them as the common diseases that mimic the NTDs symptoms,” Dr Matendechero added.
However, it is not only the direct treatment costs that hospitals bear.
Dr Patrick Sagaki, who is in charge of Amudat hospital says the poverty and illiteracy of the Karamoja area—in which Amudat falls—is perpetuated by the historical neglect of the area.
In 2018, the UN put Karamoja area in the category of the world’s poorest areas, with high rates of malnutrition and absolute poverty—61 per cent of its 1.2 million people live in absolute poverty. Majority had not even been vaccinated against common illnesses.
“Most of the patients who come here have low immunities because of malnutrition, that when they get here, we are not treating kalaazar alone but other diseases such as Tuberculosis, Malaria, and bronchitis,” Dr Sagaki said.
Illiteracy and quacks
Some of the patients, Dr Sagaki said, come from as far as 400 kilometres away, seeking care by travelling to Amudat in a region with no established means of transport.
According to the Uganda National Bureau of Statistics, more than 70 per cent of the people in Amudat cannot read and write. Andrew Ochieng’, a community health mobiliser born and raised in the area and has survived kalaazar in his childhood said that there were alternative explanations for the disease which killed people.
They would fall prey to quacks who would inject veterinary products directly to the spleen causing death instantly on the children.
With little funding, health workers can only “improvise” to treat disease
In the villages around Amudat, a name—Dr Cox—is floated around the Jie and Karamoja community on the treatment of Kalaazar, a reality that signals the donor dependence on the treatment of Kalaazar.
Dr Cox, a white man, had come to Amudat in the late 1980s and 1990s and had been among the first to treat the children who were suffering from Kalaazar. When he left, many had continued dying until the arrival of Doctors without Borders.
Eventually, Doctors without Borders had packed and left to Kenya because majority of the patients had been on the Kenyan side of the kalaazar belt that stretches from the seven districts in the Karamoja area in North Eastern Uganda to North Western Kenya.
DNDi funds the treatment, payment of the workers and food for the patients. The patients have to be hospitalised for all those days to ensure that they are fed properly and do not veer off the course of treatment. In both hospitals in Kenya and Uganda, the patient is never alone.
Dr Sagaki from Amudat in Uganda admitted a woman who had been abandoned by her husband when she fell sick, and when he learnt that she had three children, he asked that the children be brought to stay with her in the facility.
“Now we are rationing the food,” Dr Sagaki said.
When they are in the wards, the patients have to wait for weeks, even months for tests to be conducted so as to save resources.
At Kacheliba, clinician Turkei said that the reagents for conducting the DAT test are extremely expensive, and only ordered from Geneva, and they have to wait until there are eight to ten patients who need it.
“Once you open the vial, it loses its potency and will never be used again so we cannot use it on just one patient,” he told The EastAfrican.
In Uganda, the elderly, expectant women, people with HIV, and those who were treated for the disease and relapsed and need the second line AmBisome treatment have to wait for more than two months sometimes before the medication comes.
Dr Sagaki said: “During that time we treat opportunistic infections, as they stay here”
The healthcare workers have come to rely heavily on community health volunteers. Andrew Ochieng’ who speaks Acholi, Pokot and Karamoja moves around the villages, not only to educate the community about kalaazar but also making the initial diagnosis—touching their spleen, looking for signs of anaemia in the eyes and skin—and helping the patients get to the hospital.