Cape Town XDR-TB patient leads international campaign

A Cape Town survivor of extensively drug-resistant tuberculosis has taken her campaign for better access to testing and treatment from her hometown of Khayelitsha to Paris and beyond.

In August, 23-year-old Phumeza Tisile beat the odds and became one of only a few hundred South African who beat extensively drug-resistant tuberculosis (XDR-TB) each year. After an almost three-year battle with XDR-TB, Tisile has helped launch a campaign for better access to drug-resistant TB (DR-TB) testing and treatment.

In May 2010, Tisile was initially diagnosed with TB, the leading cause of death in South Africa.  Eventually, she would be diagnosed with XDR-TB but not before being misdiagnosed with multidrug-resistant (MDR-TB) first.

MDR-TB is resistant to both commonly used anti-TB drugs. XDR-TB is resistant to these drugs as well as at least half of the mostly commonly used second-line drugs.

MDR-TB treatment left Tisile – who at one time aspired to study human resource management – completely deaf. Besides hearing loss, MDR-TB treatment can also include side effect such as seizures, nausea and psychosis.

“I’d heard about TB but never in a million years did it occur to me that I would be a patient,” says Tisile, who says she now dreams of becoming a health care worker.

Tisile left Cape Town Monday night to travel to Paris to attend this year’s international Union Conference on Lung Health. While there, she will help re-launch Medicines Sans Frontières’ (MSF) ‘Test Me, Treat Me” campaign for universal access to drug-resistant TB tests and better treatment.

The online campaign is based on a manifesto Tisile wrote alongside her doctor, MSF’s DR-TB Coordinator Dr. Jennifer Hughes shortly before she was cured. So far, more than 100 drug-resistant TB patients and health workers from countries as far afield as Serbia, Brazil and Myanmar have signed onto Tisile’s manifesto.

Diagnostics for drug-resistant forms of TB were not widely available in South Africa when Tisile was first diagnosed with TB, meaning she took the wrong treatment for eight months – and lost her hearing.  She eventually deleted her favourite music off her phone as it was too painful for her to see what she would never again be able to hear.

Each year, South Africa reports more cases of XDR-TB than any other country in the world. Meanwhile, only 16 percent of TB cases are tested for MDR-TB in South Africa. Nearly half of diagnosed MDR-TB patients are never started on treatment and for those who are, the two-year treatment is grueling.

After bouts in Cape Town’s Brooklyn Chest Hospital, Tisile was admitted to MSF’s community-based DR-TB care centre, Lizo Nobando, closer to home in Khayelitsha.

“She was the perfect patient.  She did everything that she was asked to do,” Hughes remembers. “She stuck to her treatment, even through the nausea and vomiting, and even after she lost her hearing.”

Hughes treated Tisile with a drug called linezolid. Considered effective in fighting drug-resistant TB, it is not easily accessible to TB patients in South Africa due to high costs.

MSF currently pays R676 per tablet for the Pfizer product. For a two-year course of treatment, this comes to half a million rand for one patient alone.

In August 2013, Tisile was declared cured after swallowing more than  20 000 tablets and months of painful injections to beat the odds.

“I had to take at least three medications, more than 20 tablets daily, supplements and injections – it is just too much.,” says Tisile, who has been using her experience to advocate for safer, shorter and more effective treatment regimens than those she and her fellow patients had to endure. – Health-e News Service.

Watch Phumeza celebrate her last day of XDR-TB treatment:

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