TB patient shares story of ‘difficult’ treatment experience

A patient of a highly drug-resistant form of tuberculosis (TB) shared her excruciating experience of taking tablets in great quantities for treatment before joining a study that halved the medication, which was a welcomed relief.

A clinical programme will enrol 400 people in South Africa for treatment with a three-drug, six-month, all-oral regimen of bedaquiline, pretomanid and linezolid, known as the BPaL regimen, that has been shown to demonstrate a favourable outcome in 90% of patients of highly drug-resistant forms of TB.

Before the launch of the programme, Nelisiwe Ngcobo was part of a study of the BPaL regimen treatment after enduring a “very, very difficult” treatment course.

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Ngcobo shared her experience during the Thursday launch of the BPaL Clinical Access Programme (CAP) attended by a representative from the United States Agency for International Development (USAID) – who are funding CAP, Rebecca Krzywda, Dr Norbert Ndjeka from the national Department of Health,  Dr Francesca Conradie from the Wits Health Consortium – which will coordinate CAP and Gregory Jagwer from the Tuberculosis South Africa Project.

Ngcobo said after losing weight and having difficulty breathing in 2016, she went to a local clinic where she was tested for TB and later informed that she had the multidrug-resistant (MDR) form of the disease.

The medication she took on a daily basis once admitted to hospital “was not kind”, having to take up to 24 tablets, Ngcobo said.

“And that was very, very difficult,” she said, explaining that this was made worse by the fact that she was already on chronic medication.

As a result of the arduous course of medical treatment, Ngcobo said she started feeling depressed and hated taking the tablets.

One evening her then three-year-old son walked in on her as she was crying while holding a handful of tablets she was having difficulty taking.

“It was very painful,” Ngcobo said of her experience with the treatment which included “horrible” daily injections.

“I ended up having all sorts of bumps in my lower back,” Ngcobo said, which she said were caused by the injections.

After six months of agony, Ngcobo was told that her condition was not improving and that she had in fact developed extensively drug-resistant (XDR) TB.

“And I was devastated,” she said.

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Ngcobo said she was referred to a Dr Ngubane who advised her about the study, which she was eager to join because she “wanted to be part of a change”.

“I couldn’t believe it, I could just hug Dr Ngubane for that,” Ngcobo said when she learned that she now only had to take half the number of tablets and for a shorter period.

“It went on very well,” she added, further explaining that previously she had spent eight months at home because she felt weak but once she joined the study, she started regaining her strength and could go back to work.

“I must say it wasn’t a difficult thing to do because the medication had been cut down so drastically,” Ngcobo said, adding that her mood improved too.

Though the monitoring of her taking the new course of treatment “was top-notch” and she “felt like a VIP” when she went to the clinic, Ngcobo still had concerns about the practicality of how the treatment would be rolled out to hundreds of TB patients as opposed to the few who were part of the study.

However, Ngubane assured her that work was being done in this regard.

“So I was very, very happy of being part of the study,” said Ngcobo, who since February has been cleared of TB but still gets occasional calls from monitors within the study.

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