When TB strikes, the fight to live can come at the cost of a way of life for the country’s nomads. This could help ease the pain.
She is frail and slight, but Titoia Kisemei has tried to escape at every opportunity in the three months since her husband left her at the hospital.
Kisemei never gets far. She doesn’t know her way home, nurses say.
Once she got a little way down the road, another time she only made it to a nearby shopping centre.
Kisemei doesn’t know how old she is, but she looks about 50.
She’s a member of Kenya’s Maasai tribe, a community of mostly marginalised and seminomadic cattle and goat herders known for their distinct red robes and warrior history. They live in southern Kenya and spread down to northern Tanzania, often moving with their animals from one area to another in search of fresh pastures and water.
Kisemei’s family is nomadic too, so it’s hard to track down her goat-herder husband.
Every time she tries to get back to her family, security guards bring Kisemei back to the Kajiado District Hospital, about 100km from the capital Nairobi.
“It is for her own good that she has to stay here,” says Esther Mutia, the nurse in charge of Kisemei’s ward.
“It is not a matter of choice but of necessity.”
The tuberculosis (TB) “wing” at the Kajiado District Hospital, where Kisemei is the only female patient, is no ordinary ward.
Ten prefabricated houses, painted light green, are regimentally lined up next to the main hospital building.
Each has a small veranda. “T.B. MANYATTA WARDS” is stenciled in black on every house.
Manyattas are the Maasai’s loaf-shaped traditional huts, made of wood, sticks and cow dung. The huts almost always form a unit within a common fence to keep families and their livestock safe.
The hospital houses form this type of homestead too. But these “manyattas” look nothing like the traditional structures that are small with low roofs and tiny holes for windows.
The hospital units have large windows that are always open for fresh air and have concrete beds inside.
TB is an airborne disease and the germ that causes it thrives in environments where there is little airflow.
Kisemei has been admitted to Kajiado Hospital because she has multidrug-resistant tuberculosis (MDR-TB). The type of TB bacterium she has contracted is resistant to the two most commonly used TB antibiotics: isoniazid and rifampicin.
She therefore needs medication that is not only far more expensive than the drugs used to treat ordinary TB, but is also much harder to take.
“The treatment is a lot more toxic and has many more side effects,” explains Doctors without Borders (MSF) TB doctor Anja Reuters. “One of the drugs is a painful daily injection that can cause hearing impairment. Some of the other pills cause psychiatric side effects, skin discolouration, joint pain, nausea and vomiting.”
Although two new MDR-TB drugs, with fewer side effects, have been released, the Kenya Legal and Ethical Issues Network (Kelin) reports that fewer than 15 Kenyans have been able to obtain the medication (see “TB patients hold their breath for better treatment” below)
Because the MDR-TB treatment that people like Kisemei can access is so difficult to take, many patients don’t complete their drug courses and then don’t get cured. In fact, only about half of them end up TB-free, studies have shown.
That’s why Kisemei is kept in hospital: so that health workers can make sure she takes her pills.
Normal TB treatment is taken for six months. But for MDR-TB, medication often has to be taken for up to two years, says Reuters.
A person ill with TB, says the World Health Organisation (WHO), can infect up to 15 other people over the course of a year without treatment.
Each manyatta unit at the Kajiado District Hospital houses four to five patients. They can cook for themselves in separate corrugated-iron structures or family members can come and cook for them.
Patients can also order cooked food from the hospital.
“Because of her age it is most likely that she will not take the medication as required,” says Mutia. “It is better that she stays here until she finishes [the treatment].”
The manyattas have been designed to help the Maasai to feel at home.
“They put the manyattas in one compound just like they do with their homes,” explains Evaline Kibuchi, who is the international organisation Stop TB Partnership’s chief Kenya co-ordinator. “This concept is copied at the hospital so people feel comfortable. The hospital manyattas are, for instance, often round, arranged in a circle and have a fireplace.”
But for Kisemei, three months have become a long time away from home. “I came to the hospital thinking that I would be given drugs and go back home. Then I was told that I was too sick and it was best I stay at the hospital until I feel better. But I don’t know when this is,” she says through a translator.
“I miss home. No one comes to see me here. Not even my husband.”
The TB manyatta system was pioneered by Annalena Tonelli, a Catholic lawyer-turned-nun who worked in East Africa in the 1970s, according to a 2003 article in The Lancet. She worked among the nomadic Somalis who came across the border into northern Kenya.
When most of her patients refused to stay in hospitals, she built huts next door. “Tonelli brought the hospitals to them, treating them in locally made huts”, the article explains. Patients had to stay for four months, during which health workers would make sure they took their treatment.
This manyatta system laid the foundation for a TB treatment programme that became known as the Directly Observed Treatment Short-course, or Dots. It became an internationally recommended strategy in 1994.
During the 1980s in Kenya it became clear that the prevalence of TB was particularly high in the country’s pastoralist districts, according to a 2009 WHO document. In the most remote districts, the research found, “compliance with treatment was poor and up to 70% of patients defaulted”.
In 1985 the Kenyan government and the international NGO Netherlands Development Organisation started building small villages or manyattas next to health facilities where TB patients could be admitted for four months and then be discharged with a three-month supply of medicine.
Treatment compliance improved greatly, the WHO document reports, and TB manyattas were established in remote and hard-to-reach nomadic districts, such as West Pokot, Turkana, Isiolo, Kajiado, Kaikipia and Narok.
These manyattas are necessary because health facilities are spread thin in far-flung and inhospitable areas, says Solonka Nombaek, head of the clinical TB control unit at the Kajiado District Hospital.
And although many other countries, including South Africa, are increasingly moving towards “self-administered” treatment in which patients take their drugs at home and access counselling as required for support, the manyatta programmes are going in the opposite direction.
On average, Nombaek says, patients stay at the hospital for between six and eight months, or until their sputum tests negative for TB.
“If the patients are weak after the eighth month, it is advisable that they stay for the entire treatment period for close monitoring [which could be up to two years]. If the patient has side effects to the drugs, they’re advised to stay for monitoring,” Nombaek says.
“In some other cases, patients opt to stay for the entire period because of the distance and cost of coming back to the clinic. For others food is an issue and it is a requirement for them to eat well so they opt to stay because of food.”
Kibuchi says nomadic groups demand an approach during which they are observed in hospital.
“It’s the best way, because the other option is to follow them. You would have to have a mobile clinic to follow them around. It would be very expensive and impractical. It’s not economically viable.”
The TB clinic at Kajiado Hospital is open on Wednesdays – to coincide with market day and to try to get more TB patients to come for treatment.
“We have about 40 outpatients every Wednesday. From there we can diagnose the very sick ones or the ones with MDR-TB who are then admitted to the manyattas,” Nombaek explains.
But TB is still a highly stigmatised and a dreaded disease among the Maasai.
“No one would like to associate with a TB patient or with the family with the history of the disease,” researcher Joyce Chepkirui Kirui found in her 2010 master’s thesis Factors Influencing Tuberculosis Control among the Maasai of Narok District at the Jomo Kenyatta University of Agriculture and Technology.
TB-related discrimination is so harsh that it can end marriage contracts. “There are stories told about families where planned marriages were called off due to a family history of TB”, Kirui’s study showed.
This stigma, Nombaek says, is why the manyattas should serve as places of safety where patients can heal.
“For the Maasai, TB patients are looked at as a curse to the community,” he explains. “So they are left to die because the people don’t know that TB has a cure.”
There has been very little research on the impact of the manyatta wards on adherence rates among the Maasai.
But, according to Nombaek, 85% of the patients who had been admitted to Kajiado Hospital’s manyatta wards between January and March, completed their TB treatment.
“Staying at the manyatta wards is voluntary, so adherence rates to treatment are high.”
Along with her medicine, Titoia Kisemei has been getting counselling at the TB manyatta ward. She’s also learned how to adjust her traditional manyatta – by enlarging the windows to allow for good airflow –to make her family less likely to contract TB.
But still, the nurses and security guards have to keep a close eye on her.
Not only is it difficult for her to get used to the confines of the hospital, but she also comes from a community which views manyatta wards with suspicion.
Focus group participants in Kirui’s research revealed some Maasais equated manyatta wards to detention camps, where one was “imprisoned and left idle for several months”.
This perception may be exacerbated by the fact that Kenya has long arrested and imprisoned its TB patients.
In August 2010 Patrick Kirui was detained alongside his brother and uncle, charged and sent to prison for eight months. Their crime? They did not take their TB medicine.
The case was a major turning point in Kenya.
On World TB Day two years ago, however, the Kenya High Court declared the practice of incarcerating TB patients to be illegal and unconstitutional. It directed the government to develop a TB policy that would include international rights.
This policy includes isolation wards in hospitals and outlines voluntary and involuntary isolation, says Kelin’s programme manager for HIV and TB, Lucy Ghati.
“The isolation policy is necessary to prevent the spread of TB,” Ghati says. “But the state must protect the rights and interests of anyone with TB.”
Thin green and white strips run down the sides of Robert Kiboi’s lilac tracksuit bottoms. The woollen beanie pushed back from his forehead sports matching pink, mint-green and white bands.
He is not a young man, Kiboi admits, but this is his favourite outfit. “I was diagnosed with TB in October 2017 and was given medicine. But because of the drought I was moving from one place to another looking for pastures for my cattle and I couldn’t go back for the drugs as the nurse told me to,” Kiboi says.
“You get a patient and give medication for two weeks, expecting that the patient will come back for the next appointment. But if the patient comes back, it could be a month later,” Nomaek explains. “They will give various reasons like they live far or had moved with the cattle. Some patients just never come back.”
Kiboi says his health deteriorated when his medicine ran out. At some point he couldn’t eat anything. “I had to leave my cattle with my relatives and go back home because I was too weak to do anything.”
Kiboi’s wife sent him back to the hospital for more drugs. “The doctor gave me two choices: either go back home and die or stay at the manyatta for six months until I finish my medication and live my life thereafter,” he explains.
Kiboi’s wife had already made up her mind.
“The only thing she told me was that if I followed her back home she would abandon me and leave me to die alone. I had no other option but to say yes and stay at the manyatta.”
There is much to be learned from the manyatta system, Ghati insists. “The best thing is that patients get to interact with their relatives and this is good for their psychological needs.”
If anything, Ghati says, government should introduce manyattas in all the counties. In the four months since Kiboi was admitted to the manyatta, his wife has come to cook for him and his children have visited. His health has improved and he is counting the days until he is discharged.
“But,” he says, “I miss my goats.”
– Additional reporting by Joan van Dyk and Mia Malan.
TB patients hold their breath for better treatment
More than half a million people fell ill with drug-resistant tuberculosis (TB) in 2016, World Health Organisation data shows.
Older treatments for drug-resistant TB can take about two years and patients have to take handfuls of pills daily that put them at risk of conditions such as deafness or psychosis. More than half of patients with the most extreme form of drug-resistant TB – also known as extensively drug-resistant TB – will die, according to University of Cape Town studies.
Two new medicines – bedaquiline and delamanid – can treat drug-resistant TB in six to nine months. But for patients in Kenya, getting access to the drugs is unlikely.
Neither drug has been registered for use in the country, says Allan Maleche, executive director at the Kenya Legal and Ethical Issues Network on HIV and Aids. Kenyan patients can get these medicines with special permission from the government, but very few people qualify. Maleche says about six patients in Kenya have had access to bedaquiline and five to delamanid respectively.
In South Africa, bedaquiline was registered in 2013. It is available at all public sector health facilities, says Anja Reuters, a doctor who specialises in drug-resistant TB for humanitarian organisation Doctors Without Borders. The country is the biggest consumer of the drug worldwide.
Last year, South Africa scored free delamanid from drugmaker Otsuka Pharmaceutical. As part of a pilot project, the company provided enough medicine for 400 patients to complete a six-month course. A course of delamanid cost R21250.
But Reuters says the pilot’s strict rules have kept the medicine away from patients. “At first, the pilot excluded children and patients who were also on bedaquiline.”
The six-month cut-off per patient also excludes patients for whom very few drugs work, Reuters says.
These patients may need a longer course of delamanid. “Anyone who requires the drug longer than six months won’t get access to it.”
The protocols have since been relaxed, but to date only 30 South Africans have had access to delamanid.
Meanwhile, the country is still holding its breath for the life-saving drug to be approved for use, Reuters says.
“We’re urgently waiting.”
Once the drug is registered, MSF hopes delamanid will be more available for groups such as children and adolescents, for whom the medicine is safer than older drugs. Reuters explains: “It’s important for children and adolescents to have access to [delamanid] so they don’t have to suffer hearing loss.” – Joan van Dyk
Adri Kotze is a senior investigative journalist and Bhekisisa's former Africa editor. Follow her on Twitter @adrikotze.