Once, around midnight, David Kila of Dunoon came home from visiting friends.
The sound of the door closing on his one-roomed shack and his coughing must have woken his mother next door.
She called out to him: “You must go to the clinic tomorrow.”
For a while Kila didn’t answer as he prepared to go to bed. Having had tuberculosis so many times he struggles to count them, he had recognised the coughing, the tiredness and fever he had been experiencing. But in the press of daily activities, he pushed it to the back of his mind.
And his worst fears were confirmed the next day. A visit to the clinic confirmed Kila had again developed TB.
As if his woes were not enough, shortly after he started treatment, one evening while enjoying time out with friends, Kila was arrested by the police after he got on the wrong side of the law - an incident that landed him in the police cells where he was kept for 48 hours without his TB treatment.
“I tried in every way to tell them that I was on treatment, but no one would listen,” he recalled.
With his tablets back at home, he went without his medication.
But it was his second time in Pollsmoor prison, after he had failed to appear in court and was re-arrested, that Kila’s woes worsened.
Even though in the first bout in prison he was offered his TB medication, when he was detained the second time he was not as lucky.
In the press of inmates who responded to the call in the cells for those needing to go to the hospital, his voice was drowned out. Only a few were chosen and he wasn’t one of them.
It is in these situations where patients stop and start TB treatment, missing days here and there, that drug-resistant TB sometimes develops.
This form of TB, where the bacteria have adapted to the treatment, is much more dangerous than conventional TB.
Although usually curable, it requires stronger, more toxic drugs that patients must take for at least 18 months.
Kila admitted that after being released from prison he had been afraid to go back to the clinic to re-start his treatment.
In the discourse of TB control, people whom the health system has lost track of are usually called “defaulters”, a term which The Stop TB Partnership has recommended against using.
“It is generally poor quality of health services and lack of a patient-centred approach that leads to treatment interruption or failure to begin treatment. It is incorrect to shift the blame and place it on people with TB by labelling them defaulters,” it said.
Worried he would be blamed and shouted at by health workers for having stopped treatment, Kila continued to stay away.
His story is not unusual in this community, though.
Not far from his home, Lydia van der Berg also had a story to tell about defaulting on treatment.
Her room-mate at DP Marais TB hospital in Retreat also defaulted on her treatment - an experience that has left Van der Berg traumatised.
She witnessed how her friend would hold her fist closed after she supposedly had taken her medication and how she grew weaker and weaker. When her friend died, the hospital staff found the collection of pills her room-mate had not taken and had hidden away.
As she sat in her family’s home in Dunoon, Van der Berg said it was that memory and the wish to see her daughters grow up and study that kept her motivated to continue with her own treatment.
It hasn’t been an easy experience for Van der Berg, who is HIV-positive and had also given up on treatment many times.
Side-effects of the medication are a common reason patients interrupt their treatment, said Mavis Nonkunzi, senior social worker at NGO, TB/HIV Care Association.
“The drugs are strong and
people react differently to them. I’ve heard of doctors with TB, people who fully know the consequences of interrupting treatment, who think twice about continuing because of the side-effects they were experiencing.”
Nonkunzi is also all too familiar with another issue Van der Berg hinted at - taking medication on an empty stomach.
“Poverty and food insecurity are a major challenge for many people on TB treatment. Not everyone has a meal everyday and if you don’t, food becomes the priority, not medication.”
Kila and Van der Berg chose to tell their stories so people understand that stopping TB treatment is not always what someone chooses, but what happens when a complex health system involving several institutions, fails them.
Kila said: “I want to tell others who find themselves in a situation like I did, don’t be afraid to speak up for yourself.”
According to the Health Systems Trust District Barometer 2015/2016, the national loss to follow-up rate was 5.6% in 2014 - a marginal improvement from 5.8% in 2013.
At provincial level, the loss to follow-up rate decreased in six of the nine provinces, with the most notable improvements being in Mpumalanga (from 5.4% in 2013 to 3.8% in 2014), North West (from 7.1% in 2013 to 5.7% in 2014) and in the Eastern Cape (from 7.7% in 2013 to 6.5% in 2014).
Limpopo, Free State and the Western Cape saw an increase in loss to follow-up rate.
While the rates in Limpopo and the Free State were still below the national target of 6%, the loss to follow up rate in the Western Cape was the highest in the country at 8.8%.
Alison Best from the HIV/TB Care Association said of concern was that up to 25% of sputum smear-positive TB cases were lost to follow-up before treatment initiation - a situation that contributed to ongoing transmission and an increased risk of death.
Emerantia Cupido, spokesperson from the Western Cape Department of Health, which has the fourth highest number of TB infections in the country, with more than 41000 new cases cases every year, said there were government efforts aimed at reducing the TB burden in the country.
South Africa’s public sector, including the Western Cape, for instance, has added two new drug resistant (DR-TB) drugs to the DR-TB drug programme - bedaquiline and linezolid.
“These drugs are extremely effective and are now included in the treatment of all XDR-TB patients. As a result, patients with XDR-TB are feeling better faster and becoming non-infectious sooner and hence decreasing the defaulter rate.
“The department is also finalising systems and processes for the roll-out of a shorter regimen of treatment, which is an opportunity to decrease the high defaulter rate. The shortened regimen could be an effective strategy to keep patients committed to complete their treatment due to shortening the length of treatment and minimising the side effects which are common reasons for defaulting treatment,” she said.
As part of encouraging TB patients to take treatment, multi-disciplinary teams (doctor, nurse, psychologist and social worker, counsellor) perform comprehensive counselling and education with the patient and their family with regards to drug resistant TB treatment.
“TB, however, is a social condition and hence the TB response needs involvement of the patient, community, other department and sectors,” said Cupido.
For Van der Berg, effective TB treatment is her only hope.
She said: “My mother and my family are my friends. Doctor said
I am in the last stage. This is my
last chance.”