Before 2006, Daniel Kibet was an ordinary healthy boy who had just begun his secondary education in Kapenguria.
He was a beacon of hope for his age mates in the poverty stricken village of Loruk in Baringo County, who would not in their wildest dreams think of completing primary school.
When Kibet’s abdomen began to swell his family was convinced that he had been bewitched by their enemies because of this academic progression.
Unknown to them he had an enlarged spleen and symptoms similar to other people in the village. Kibet’s family gave him a regimen of herbs and concoctions to heal him but they did not work. He was forced to abandon his studies and what had earlier seemed to be a path to a brighter future.
Fortunately for Kibet and other villagers, the Kenya Medical Research Institute (Kemri) had by then already taken a keen interest in the ailment.
When Samuel Chirchir, one of Kemri’s field officers came to Loruk he noticed Kibet’s condition, examined him and concluded that he like many others in the area he suffered from kala-azar.
Even though the incidence of the disease is high not only in Baringo but also other rural areas, patients have no access to proper healthcare and treatment.
At the time, main treatment centre for the disease was Kemri headquarters in Nairobi, and Chirchir knowing the fatality of the disease quickly arranged for Kibet and the others to travel there. They were admitted to the facility and prescribed sodium stibogluconate (SSG) injections for a month.
“The injections were unbearable and I had to stay in hospital for the whole month. When my condition began to improve I looked forward to the day I would go home,” recalls Kibet.
He is thankful that he is free of the disease and he has since moved on with his life.
Kala-azar also known as visceral leishmaniasis is a protozoan disease caused by parasites found in the female sandfly. Its symptoms include enlargement of the spleen, loss of weight and sometimes anaemia.
The disease is listed by the World Health Organisation as one of the 17 neglected tropical diseases. Globally, 300,000 new cases are reported and about 40,000 deaths annually.
An estimated 90 per cent of the new cases are reported in Bangladesh, Kenya, India, Nepal, Brazil, Ethiopia and Sudan where the disease burden is the highest.
The Ministry of Health data shows that an average of 4,000 people are treated annually, though the figure may not reflect the actual number of those infected because most of the patients lack access to proper healthcare.
The disease affects the rural poor in 22 districts in the Rift Valley, Eastern and parts of North Eastern regions.
Kibet is among kala-azar patients who have suffered for decades because of the lack of an affordable and safe treatment.
Chemasila Lokorlima, 24, can now manage a smile, even though she has been confined to a bed in the kala-azar ward at the Kimalel Health Centre, she is happy that her 10-month-old baby girl is responding to treatment.
Ms Lokorlima recalls how her child’s health began to change close to a month ago, forcing her to abandon other family responsibilities to nurse her child.
“Some people in my village had suffered from kala-azar before and they advised me to come here for treatment,” she said. “It is quite remote, about 110km from Loruk and there is no public transport. I walked half the distance before I hitched a lift from a motorists who was heading to Baringo.
Ms Lokorlima says that treatment of the diseased is better than a few years ago when her neighbour’s son was diagnosed with the disease and was admitted to hospital for a month.
“We have been here for close to a week but we hope to be out of hospital and return home before the month ends,” she added.
According Kemri assistant director of research Monique Wasunna, the drug that was used for a long time to treat kala-azar globally was developed more than three decades ago.
“It had a bitter test and was in itself toxic, as a medical practitioner you would opt to give it to patients in order to save their lives but also at the back of your mind know that five per cent of the patients will not survive the treatment,” recalls Dr Wasunna.
Several countries, NGOs and pharmaceutical companies have since invested in research to develop drugs that are less toxic and taken for shorter period.
For instance, in East Africa where the disease is endemic, Kenya Sudan Uganda and Ethiopia have partnered under the aegis of the Drugs for Neglected Disease Initiative to develop research on treatment methods.
So far, the heavy investments in research have begun to bear fruit, which many recovering patients like Ms Lokorlima’s daughter can demonstrate.
The greatest milestone is the acceptance of a combination therapy for the treatment of kala-azar in the four countries.
Last year, the then Ministry of Public Health released revised guidelines for health workers in the diagnosis and management of kala-azar that included use of the new treatment.
Clinical trials have shown that the use of paromomycin together with SSG reduces death and other complications during treatment as well as reducing the treatment time to 17 from 30 days.
Dr Wasunna disclosed that the research platform is also working towards new combination therapies that would further bring down the administration of drug to 11 days.
The treatment whose trials are being conducted in Kenya and Sudan involves patients receiving oral treatment only on the first day.
“We are working on a combination treatment that will include miltefosine, a drug that is currently being used in India for the treatment of visceral leishmaniasis (the most common form of leishmaniasis) but, which on its own cannot be given to women of child-bearing age as it is known to affect unborn babies,” she explained.
The clinical trials, if successful will see the reduction of the medicine’s cost to less than Sh8,000. Currently, full treatment costs Sh15,000, a significant drop from SSG injections which cost Sh22,000.
She cited infrastructure and illiteracy as some of the challenges that have made it difficult for the disease to be wiped out.
“A few years ago all the testing for kala-azar was being done at the Kemri in Nairobi and people would travel there, when we started the research centre here in Baringo people from as far as 100km away could come, but now our reach has grown to more than 170km in the interior where there are no roads and basic facilities like water and toilets,” she said.
Dr Wasunna adds that despite cultural setbacks and inadequate funding, researchers still conduct clinical trials in order to develop more effective medicine.
Even with major achievements in drug-making, very little has been gained in terms of finding ways to eradicate the vector — the female sand-fly — which transmits the parasites to humans.
Many of the patients treated of visceral leishmaniasis and discharged still return to their homes where these sand-flies are. It is possible for the cured patients to catch the disease again.
There is, however, a lack of knowledge among the public with many people terming the disease a curse.
Joel Yator’s son contracted kala-azar in 2010 and was fortunate enough to get treatment in time saving his life. However, today the seven-year-old Alex Kipkotot is back in hospital, this time not only with a swollen abdomen but also rashes all over his face and neck as well as lighter patches on cheeks.
“When the field officer came to the village, I took my son to him and explained his previous ailment and treatment then he asked us to come to the health centre,” lamented Mr Yator. “He is not the first boy to have these symptoms in the village. I know of three others whom I have left behind.”
He expressed concerns that the outbreak might be an allergic reaction to the medication that was administered during the first treatment.
However, Dr Njoroge Njenga, a Kemri researcher based at the Kimalel dismisses the claim.
“It is possible for kala-azar to recur in a patient even after they have been treated, because the body does not form immunity against the parasites, in most cases the recurrence is shown by the rashes on the skin,” he says.
Dr Njenga defines Kipkotot’s medical condition as post kala-azar dermal leishmaniasis, which occurs in 25 per cent of all the treated cases.
The rashes occur on the face in the first few months after treatment and could spread to the rest of the body.
“Treatment given is almost similar to that of visceral leishmaniasis but normally administered for a longer period,” the researcher added.
Apart from kala-azar, another neglected disease that plagues Africa is sleeping sickness also known as the human African trypanosomiasis, which is endemic in Central Africa with many of the cases reported in the Democratic Republic of Congo.
Like kala-azar, very little had been done a decade ago to develop better drugs and a number of patients could die from drug poisoning.
Over the years patients were treated with a century-old regimen, painful injections of an arsenic-based drug, which killed one in 20 patients.
An improved treatment was developed in 2009 — a therapy combining an oral drug with intravenous injections, which has become the treatment of choice in all endemic countries.
Trials of oral drugs are currently being conducted in selected areas in Central Africa to provide a better therapy for the sleeping disease.
The new 10-day oral treatment by fexinidazole is currently at advanced stages of clinical trials in DRC and Central African Republic.
According to Dr Wilfried Mutumbo Kalonji, who works with the HAT National Control Programme in DRC, many of the patients do not access treatment in time.
“Yes, the (civil) war might have contributed to the lack of access but then again if you look at the peaceful areas there are no hospitals for the sick let alone the roads to get there,” he says.
Dr Kalonji says that the skilled medical practitioners in the country specialising in sleeping sickness are quite few and many of the doctors have to cover long distances using motorcycles to reach patients.
“The medication for sleeping sickness is also not that available in the country, we mostly give both injectable and oral drugs, which require the patients to be hospitalised and sometimes even as you try to reach those in remote areas you have to carry just enough for a few patients because of the weight,” he says.
Neglected tropical diseases continue to cause significant deaths in the developing world. Yet, of the 1,556 new drugs approved between 1975 and 2004, only 21 (1.3 per cent) were specifically developed for tropical diseases and tuberculosis, even though they account for 11.4 per cent of the global disease burden.
According to John Amuasi, a medical doctor who heads the research department at the Komfo Ankoye Teaching Hospital in Ghana, these challenges can be adequately addressed with proper funding.
“Many of the people who suffer from these diseases are not financially stable and as such cannot on their own afford these kinds of treatment,” he said. “Most pharmaceutical companies unfortunately look for areas to invest in where they can eventually make profits.”
The researcher said that because of this, most of Africa’s rural population, who are mainly at risk of neglected diseases, are caught up in the vicious circle of poverty.
“If they are affected in one way or another because treatment for the diseases eats into their finances, which they could have used to improve their livelihoods,” says Dr Amuasi.
With the help of donors like the Bill and Melinda Gates Foundation, a pilot programme to produce affordable medication against malaria was implemented in selected West African countries.
The researcher noted that the pilot programme increased greatly the number of poor people who could access malaria treatment and also helped to boost their livelihoods because they were able to buy food with the money that they saved.
“Even with such noble ideas there is a need for proper government structures to eliminate corruption and to ensure that the public get the increased access to medication at the set prices,” reiterated Dr Amuasi.
Prof Marcel Tanner, a director at the Swiss Tropical and Public Health Institute told the Business Daily that it is possible for the continent to eradicate such neglected diseases with proper investments.
“Neglected diseases can be eradicated by using a wholesome approach, not just by looking at them from the point of just being diseases,” he said. “If you look at the endemic areas many of the people there lack basic facilities like toilets, roads, hospitals and education.”
Prof Tanner called on governments to provide the much needed political goodwill that would fast track World Health Organisation plans to eradicate some of neglected diseases by 2020.