‘Forgotten’ TB patients speak out

It took almost two years of consistent visits to public health facilities before 32-year-old Gundo Tshishonge was finally diagnosed with multi-drug resistant (MDR) TB.

Tshishonge, from Muhuyu village outside Sibasa, was diagnosed with TB in June, at Tshilidzini Hospital after a series of tests.

“I was very sick for a long time and went to the local clinic but they couldn’t detect that the cause of my sickness was TB. I was finally referred to Tshilidzini Hospital in June and after several tests it was confirmed that I have TB,” said Tshishonge.

South Africa has the highest number of drug-resistant TB cases per capita in the world, thanks mainly to weaknesses in SA’s TB treatment programme and the massive burden of HIV.

According to the latest South African TB survey, 2·1% of new TB cases and 4·6% of previously treated TB cases are MDR, and almost 5% of these are categorised as extensively drug-resistant (XDR) cases. Compared with 2001–02, the prevalence of resistance to one of the most common TB medicines, rifampicin, has doubled in the 2012–14 survey.

TB is the top infectious killer worldwide, claiming about 4 400 lives a day. It also remains the leading cause of death among people living with HIV, causing one in three Aids-related deaths, according to UNAIDS.

In 2017, 1.6 million people died from TB, including about 300 000 people living with HIV. Despite the high burden of MDR TB, Tshishonge said doctors had been confused about what was making him sick. Tshishonge said residents in the village thought he was HIV-positive because he lost weight and when he informed them he had TB, some kept their distance from him in fear that he might pass the TB to them.

“People still lack knowledge on how to support people with TB. I experienced a lot of discrimination from people the moment I disclosed that I had MDR-TB, but luckily I had the support of my family,” he said.

Tshishonge was not hospitalised but was worried about the amount of time he had to spend at public health facilities for checkups and to collect his medication. Once he was told his medication was not available and he had to buy it from a private pharmacy for that month.

Magdalene Thomas, a community-based care worker, says there is still a lot of stigma attached to TB and this is driving the spread of MDR in communities. MDR patients are supposed to wear masks in public to prevent the spread of the bacteria.

But Thomas, who works for the department of health in the John Taolo Gaetsewe District in the Northern Cape, said this is very difficult for them.

Thomas said one day she put on a respiratory mask and stood on the side of the road to try to get into Upington to test how widespread the stigma associated with TB was. But she waited and waited. Even when a taxi stopped, the other passengers wouldn’t let her get in. She was eventually offered a lift about two hours later.

Maria Moseki, a retired nurse who volunteers as a community-based care worker, says patients who are given masks only wear them during their clinic visits.

“When we visit them we find them without masks and some only put them on when they see us coming. We have a responsibility to educate one another about TB and especially to protect our children from getting TB, because babies are more prone to TB infections,” she said.

– Health-e News

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