Sign language training and TB support in Swaziland

For patients with XDR-TB, treatment is a gruelling journey with severe side effects

"I was receiving injections every day. The Médecins Sans Frontières (MSF) team would visit every now and then to make sure I was getting my injections. The doctor says the injections are why I became deaf," says Winile, a TB patient who lost her hearing in 2013.

Winile has been a patient at MSF's clinic in Matsapha since it opened in 2011, when she enrolled for HIV care. Swaziland has one of the highest rates of TB and multidrug-resistant TB (MDR-TB) in the world, and 80 per cent of people in the country who contract TB are HIV positive.

Every year, some 7,000 people in Swaziland are diagnosed with TB and approximately 900 of them will develop drug-resistant TB (DR-TB). Of those treated for MDR-TB, 25 per cent will suffer from hearing loss and deafness as a side effect of their treatment.

Winile is one of these 25 per cent.

She was diagnosed with MDR-TB and started treatment in March 2013. Six months into her treatment, Winile lost her hearing. She also struggled with her treatment and, in 2015, it became apparent that the disease was not responding and the TB bacteria had become resistant to the medicines used. In September 2015, Winile started extensively drug- resistant TB (XDR-TB) treatment.

XDR-TB is an exceptional type of drug-resistant TB that does not respond to the most potent first- and second-line TB drugs. This makes it extremely challenging to cure and sometimes impossible to treat.

XDR-TB treatment is a long and difficult two-year journey, which involves taking numerous toxic drugs, including daily injections for the first six months. The medicines can have severe side effects, including deafness, liver or kidney toxicity and psychosis.

Hope for those who previously had none

TB support in Swaziland
Celumusa Hlatswako, an MSF counsellor, communicates with Winile through sign language.  
Alexis Huguet/MSF

But Winile is lucky in some ways. She is one of very few patients in the world being treated for XDR-TB with bedaquiline. In the last 50 years, it's one of only two new TB drugs. These new drugs have fewer side effects and do not put patients' hearing at risk.

Bedaquiline and delamanid were approved separately by drug regulators in 2012 and 2014. Although they bring new hope to XDR-TB patients who previously had no treatment options left, their use worldwide is still very limited. In October 2016, it was estimated that, globally, only 5,738 patients had been able to access bedaquiline and 405 patients had had access to delamanid. 

Swaziland was granted use of these drugs in 2014. In 2015, MSF began supplying and supporting the Ministry of Health to treat patients with them in four TB referral facilities in the country.

Winile is responding well to her XDR-TB treatment and is hopeful of being cured. "Now I'm better and the doctor says I will soon finish my treatment," she says.

MSF doctor Veronica Polcova explains that to be cured of TB, XDR-TB patients need to complete a full course of treatment and produce three consecutive negative cultures (meaning that TB bacteria can no longer be found in their sputum) taken at intervals of at least 30 days.

"Since she was switched to bedaquiline, Winile has shown steady improvement," says Dr Polcova. "The usual duration of XDR-TB treatment is 24 months depending on the month of culture conversion. Winile has been on treatment for 19 months now. She is culture negative and responding to the treatment well. For now it is a matter of monitoring her clinical condition, adherence and sputum and to hope her cultures will remain negative up to the end of her treatment course."

Winile is now also able to communicate with her family and friends after completing MSF's sign language training for patients who've gone deaf as a result of their TB treatment.

Although it has been a long and difficult journey, Winile has not lost hope. She looks forward to one day being cured and, with her new sign language skills, finding a job so she is able to provide for her children, who are currently living with her mother.

MSF started working in Swaziland in 2007. We work closely with the Ministry of Health to improve diagnosis and treatment of TB, especially DR-TB, and work in government health facilities in Mankayane, Matsapha, Shiselweni and Moneni. To help patients continue their treatment in spite of the often challenging side effects, MSF teams go beyond just providing medical care. They help patients cope by providing at-home care where possible and offering individual medical follow-ups and adherence counselling, group peer counselling, transport allowances, housing support, food packages, occupational therapy and sign language training (for patients who become deaf as a side effect of treatment).