DOWN a side street in Kawempe division, one of five districts which 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 green and pink woven mat, kneels into a seated position and watches as her six-year-old son emulates her movements perching himself next to her.
“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 to her left at her son, Hethiri Bukenya. “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 around Kampala, both public and private, without any improvement to 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 and almost 300 km from Kampala, Hethiri was given herbal medicines by the local traditional healer. He kept coughing. Her 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.”
Sarah went to so many different health facilities that she cannot even remember the number, yet Hethiri was discharged countless times with a new and ineffective package of medicines.
Although he displayed 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 over 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 (Union), the reasons for delayed diagnosis in many patients is multi-faceted.
“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,” she 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 (WHO) which constitute 80% of the global burden of the disease.
The WHO 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 the acting TB and leprosy manager for the country’s ministry of health, Frank Mugabe.
“This leaves about 16,000 people undetected who we expect to be spreading the disease in their communities,” he says.
International TB expert from the Geneva-based organisation Stop TB Partnership, Lucica Ditiu, says the reason for the missed cases globally is largely historic. “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.
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, through 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 will be free of charge because she didn’t have the money,” Kisembo recalls. Sarah helps prepare potato chips at a slum shop to earn a living where she makes about 5000 Ugandan shillings a day (about $1.7).
“I said yes it is free; please come.”
According to Kisembo, at that stage, Hethiri was “very tiny, very thin” and “you could see he was living a miserable life”. “People were even scared of him; children were running away and 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 (mucous coughed up from the lower airways) to the health workers at the camp and it was sent for TB testing.
It came back positive.
The health camps, which occur 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 Union. On average 250 people are screened for TB at each camp.
“This project is about trying to find the missing and hard to reach cases,” says Paula Fujiwara, the scientific director for the Union. “We’re working in urban slums because this is where people don’t have much access to TB services.”
Infection are high because slums are densely populated and many of the homes don’t have good ventilation making transmission of the air borne disease likely. Although few public facilities are located in slums there are over 1000 private clinics in Kampala which constitutes about 80% of the total health care services in the city, according to Nakanwagi.
“25% of the urban population of Uganda is here in Kampala and the majority of them are poor,” she says.
However, she says 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”.
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 facilities in Kampala have slowly started to provide TB services through public private partnerships with the national ministry of health.
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.
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 they 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 at the beginning of 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.
“Uganda’s private sector is more informal than formal so we have to do an assessment of facilities before approving them to access medication and support from the national TB programme,” says Mugabe.
Village health teams, common across the country, have been assigned to these slum clinics to help with adherence to the many months of treatment.
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,” he says.
The village health team members, volunteers who receive a minimal cost-covering stipend from organisations or the state, try make sure this doesn’t happen by checking up on individual patients in their localities.
Public private partnership
Mugabe describes the results of the public-private partnership as “amazing”.
Because private clinics are usually closer to slum populations, “likely to be visited more often”, are more “patient-centred” and are likely to be open after business hours, unlike public facilities, “we are thinking that this can be a very good model for us to scale up in the other urban areas”.
However, 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,” he says. “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% each 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%.”
She said if TB cases continue to decrease at the current rate, in 180 years we will have a global level of TB that we see in developed countries.
“If we continue with a passive approach to detecting the disease we won’t hear the words ‘TB-elimination’ in 180 years – it’s terrifying,” she says.
According to Jacob Creswell from the Stop TB Partnership this public-private partnership for TB control is an example of “thinking outside the box” as well as it being unique in Africa; Uganda is the only country on the continent, other than Nigeria, using this kind of model.
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.”