Down a side street in Kawempe division, one of five districts that make up Uganda’s capital city Kampala, two women chat behind a ramshackle wooden structure displaying baskets of tomatoes and bananas. Flies surround the fruit but the women take no notice. Twenty steps further down the dirt road of the city slum, Sarah Najjuka unrolls a woven green and pink mat, kneels and watches as her six-year-old son emulates her movements.
“I used to wrap a cloth around his head before school because when it was cold he would cough so much,” she says in a soft but steady voice, gesturing at her own headscarf in explanation.
The 22-year-old single mother looks down at her son, Hethiri Bukenya. He’s inherited her long, full eyelashes and smooth complexion. “Eventually he could no longer go to [nursery] school – he was too sick.”
When Hethiri was four he developed a violent cough and began to lose weight. Sarah spent a year and a half taking her son to different clinics and hospitals in Kampala, both public and private, without any improvement in her son’s condition. “By this time I was so desperate I decided to go to the village where my mother stays to get some help,” she says, smacking the back of one hand into the palm of the other in frustration.
In her mother’s village, near the city of Mbarara, almost 300km from Kampala, Hethiri was given herbal medicines by the local traditional healer. But he kept coughing. Sarah’s voice cracks and she wipes a falling tear from her cheek with the sleeve of her dress. “I decided to come back because everything had failed.”
Pillar to post
Sarah went to so many different health facilities that she cannot even remember the number, yet Hethiri was discharged each time with a packet of new and ineffective medicine. Although he displayed the classic symptoms of tuberculosis (TB), such as coughing up blood and a dramatic loss of weight, he was not tested for the disease.
Sarah’s experience, although extreme, is not unusual in Uganda. A 2014 study published in the International Journal of Africa Nursing Sciences noted that Ugandan patients often spend more than six months after their symptoms first appear repeatedly going to health facilities before their TB is diagnosed.
According to Anna Nakanwagi, the Ugandan country director for the International Union Against Tuberculosis and Lung Disease, the reasons for delayed diagnosis in many patients are multifaceted. “There are limited resources in the country for TB control and these are focused in the government facilities,” she says.
Sixty percent of the population in urban centres access primary health services from the private sector, which do “not have the knowledge and skills to detect TB”.
“People who come to the private facilities would be treated for other health conditions and the health workers would miss the TB,” Nakanwagi says. “Additionally, people are not aware of TB. It’s not like HIV, which everyone knows about. Communication activities around TB don’t nearly match those of HIV.”
Even though Uganda has met its millennium development goals for reducing TB-related deaths and new infections, it remains one of 22 countries identified by the World Health Organisation that constitute 80% of the global burden of the disease.
The organisation estimates that, globally, one in three TB cases goes undetected every year. This is particularly true in Uganda where 60 000 cases are expected but only 44 000 are found, according to Frank Mugabe, the acting TB and leprosy manager for the country’s health ministry. “This leaves about 16 000 people undetected, who we expect to be spreading the disease in their communities,” he says.
Lucica Ditiu, an international TB expert from the Geneva-based organisation Stop TB Partnership, says the reason for the missed cases is largely historical. “Our approach for many decades has been what we call ‘passive case finding’, where the doctor or nurse waits for the patient to come to them.”
This “medicalised” approach has had the largest impact on “vulnerable groups” who may not have the means or knowledge to seek appropriate care. According to Ditiu, “we will never find this third of missing cases” unless efforts are made to go into communities to find potential TB infections – what she calls “active case finding”.
One evening, after Sarah’s return to Kampala from her mother’s village, sitting in her tiny rented room with ailing Hethiri, she heard a loud voice outside.
The voice belonged to village health team volunteer John Kisembo who, using a megaphone, was informing the slum community that there would be a health camp the following day at a nearby playground, with testing for HIV and TB. “She asked me if the services would be free of charge because she didn’t have the money,” Kisembo recalls.
To earn a living, Sarah helps to prepare potato chips at a slum shop where she makes about 5 000 Ugandan shillings a day (about R21). “I said: ‘Yes, it is free; please come.'”
Kisembo says that, at that stage, Hethiri was “very tiny, very thin” and “you could see he was living a miserable life. People were scared of him; children would run away; the mother was telling people she has taken this child everywhere, he is not improving and she doesn’t know why.”
The following day Hethiri gave a sample of his sputum (mucus coughed up from the lungs) to the health workers at the camp and it was sent for TB testing.
It came back positive.
The health camps, which take place every month in each of the five districts in Kampala, are part of an initiative started in 2011 called Slum Partnerships to Actively Respond to TB in Kampala (Spark TB), implemented by the International Union Against Tuberculosis and Lung Disease.
“This project is about trying to find the missing and hard-to-reach cases,” says Paula Fujiwara, scientific director for the union. “We work in urban slums because this is where people don’t have access to TB services.”
The union’s Nakanwagi says government facilities, with expertise in TB diagnosis and that provide free anti-TB drugs, are few and are often located far from people living in urban slums, a particularly vulnerable group.
She says this group is at a high risk of TB infection because slums are densely populated and many of the homes don’t have good ventilation, making transmission of the airborne disease likely.
Though there are few public facilities in the slums, there are more than 1 000 private clinics in Kampala, constituting about 80% of the city’s total healthcare services, Nakanwagi says. “Twenty-five percent of the urban population of Uganda is here in Kampala and the majority of them are poor,” she says.
But people are still willing to pay for health services because government facilities are few, far from slums, overcrowded and people “perceive that the quality of care isn’t good in the public sector”, she says.
The health ministry’s Mugabe says that, although these facilities may provide good health services closer to patients’ homes, they were detrimental to TB control. “A few years ago I would estimate that not more than 5% of private facilities even knew the definition or diagnosis of TB – never mind the treatment regimen,” he says.
But from 2011, private healthcare facilities in Kampala slowly started to provide TB services through public-private partnerships with the health ministry. As part of Spark TB, health workers at a number of private clinics have been trained to diagnose and treat the disease and, to date, 1 700 TB patients in Kampala have been diagnosed and treated through this route – Hethiri being one of them.
Medical staff explain the challenges of ongoing TB to journalists at the Pillars Medical Centrein Kawempe, Kampala.
Pillars Medical Centre, a private clinic in Kawempe division near Sarah’s home, is one example.
“We didn’t have the expertise to identify TB so if we had a suspected case we would refer them to a government facility but after that we would lose them; we wouldn’t know if they had been tested or treated. It was a problem,” says Kasawuli Mahmoud, who runs Pillars.
But currently, if Pillars receives a suspected TB case it can test, diagnose and receive free anti-TB drugs from the government’s national medical store. Patients pay 5 000 Ugandan shillings (R21) to be tested but get their medication for free.
Hethiri, now cured, was diagnosed and treated at Pillars early in 2014.
As part of the agreement with government, private facilities must record and report TB cases to the health ministry.
Only 14 clinics have been approved to receive medication from the national store but these in turn support five or six clinics close to them, forming a network of about 70 private facilities in Kampala, says Nakanwagi.
These “supported” clinics report cases and receive medication through the accredited 14.
Village health teams across the country have been assigned to the slum clinics to help with adherence to the many months of treatment. “[Village health team members] live in the localities where we’re operating and are closer to the community,” says Mahmoud. “They follow up with patients in their homes if they do not come to get their next month of medication.”
TB treatment in Uganda consists of an eight-month course of four drugs. However, the country is in the process of switching to the global standard of six months of treatment, which all new patients are given.
“The problem with TB treatment is that after about two weeks on the drugs, coughing calms down and the general condition improves so many patients stop taking their medication thinking they are cured,” Mahmoud says.
The village health team members, volunteers who receive a minimal cost-covering stipend from organisations or the state, try to make sure this doesn’t happen by checking up on individual patients in their localities.
Because private clinics are usually closer to slum populations, they are “likely to be visited more often”, are more “patient-centred” and are likely to be open after business hours, unlike public facilities, says Mugabe.
“We are thinking that this can be a very good model for us to scale up in the other urban areas.” But he has reservations. “Our challenge is providing incentives for private facilities, which we can’t do much of, being a programme that is ill-resourced.”
Without incentives he does not believe the model is sustainable. “But those that have come on board so far seem motivated. Ultimately we want a win-win situation for government, private facilities and, of course, patients.”
Globally the number of new TB cases is decreasing by just over 1% a year, but Ditiu says this is no reason to “relax”. “It’s going down but it’s a snail walk. If we want to see any real impact the number of new cases needs to decrease by seven to 10%.”
If TB cases continue to decrease at the current rate, in 180 years Uganda will have a global level of TB comparable with that in developed countries, she says.
“If we continue with a passive approach to detecting the disease we won’t hear the words ‘TB-eliminated’ in 180 years – it’s terrifying.”
According to Jacob Creswell from the Stop TB Partnership, this public-private partnership for TB control is an example of “thinking outside the box”. Uganda is the only country on the continent other than Nigeria to use this type of model. He says that creative and country-specific strategies such as this need to be developed across the globe to decrease the large number of undetected cases.
Outside Sarah’s home a light drizzle falls, bringing the smell of sewage into the air. She opens the red metal door and holds the white lace curtain behind it aside for Hethiri to enter the dark room.
The rectangular, cement-floored space accommodates a bed on one side and a wash room with a bucket on the other. Sarah reaches below an old television set and pulls out a framed photograph of Hethiri in a black gown.
“He just graduated kindergarten,” she says, with a shy smile.
Sitting on the edge of the bed, she motions for Hethiri to join her. He grabs some paper from beneath the television and sits down next her. He is now eligible to start primary school and, almost as if to prove it, places the paper on her lap for support. With an old pencil he slowly writes a word.
A few minutes earlier on the mat outside she had exclaimed: “My child was going to die!”
But in the darkened room Hethiri looks far from death: he scratches his nose and smiles to reveal a pair of growing teeth.
Now that he has a chance, what would he like to be when he grows up?
He thinks for a moment then says: “The president of Uganda.”
Recovered TB patient Hethiri Bukenay (6) with his mother Sarah and health worker John Kisembo in Kawempe.
South Africa lags behind the continent in tackling TB
South Africa has the world’s third-highest tuberculosis (TB) burden (after India and China) according to the World Health Organisation – but once the figures are adjusted for population size, South Africa’s infection rate is the highest.
About 70% of South Africans with TB disease are also infected with HIV – the highest co-infection rate in the world, according to the health department.
The targets set by the department in its National Strategic Plan (NSP) for HIV, sexually transmitted infections and TB are to halve the number of new cases as well deaths from the infections and diseases by 2016 and to have no new infections or deaths by 2032.
Academics and activists criticise government’s response to the epidemic as too slow, especially when compared with TB control in poorer African countries. They doubt whether the department will achieve its targets.
In an opinion piece in the Mail & Guardian last year, Cape Town doctor Jennifer Hughes wrote: “How embarrassing for a government to have the means and resources to develop and deliver better treatment to combat a disease that kills but that can be cured, but not to have the political commitment to prioritise it.”
For example, the TB disease rate in South African prisons is exceptionally high, with 4.3% of all cases coming from correctional facilities in 2012, according to Health Minister Aaron Motsoaledi.
In 2012, Dudley Lee won a case in the Constitutional Court against the minister of correctional services for contracting TB while awaiting trial at Pollsmoor in the Western Cape from 1999 to 2004. He sued the minister for R270 000 because he contracted and developed TB as a result of being held in overcrowded and poorly ventilated cells.
After the case, the health department started a screening campaign in prisons, checking inmates for TB on entry, twice during incarceration and again on release.
But according to a 2014 edition of the Treatment Action Campaign’s NSP Review, inmates who tested positive for the disease sometimes did not get treatment. “Without providing effective access to … treatment, mass screening is not only an expensive exercise but also presents a serious ethical issue.”
The review noted that only eight doctors were employed by the correctional services department to look after almost 160 000 inmates. This directly affected the treatment of TB because “nurses can prescribe TB treatment but the pharmacy will not dispense without a doctor’s signature”, the review noted.
Moreover, cases of the multidrug resistant (MDR-TB) form of TB, which is much more difficult and expensive to treat, are increasing. According to a 2014 report in the South African Medical Journal, the country has the second-highest number of diagnosed MDR-TB cases in the world after India, with almost 15 000 cases a year.
The report also noted that 25% of positive TB cases in the country were “lost to follow-up before treatment initiation”, which “may contribute to ongoing transmission and an increased risk of death”. Although the study noted that South Africa had made “notable progress in improving TB control”, the “burden of TB remained ‘enormous'”.
The article’s authors argued that, for the country to achieve the NSP targets, “additional strategies” needed to be implemented by the health department, including better access to treatment for special populations such as prisoners as well as focusing on diagnosing and successfully treating MDR-TB.
On Tuesday, World TB Day, Motsoaledi and Deputy President Cyril Ramaphosa launched a national TB screening campaign in Kanana, near Klerksdorp in the North West. It aims to have 90% of the country’s 160 000 inmates and 90% of an estimated 500 000 miners screened by March 2016.
“Next year we focus on screening in the metropolitan municipalities; the year after in the provinces with the highest burden of TB,” said the department’s deputy director general Yogan Pillay. – Amy Green