Feature story |

Now I am better: a gruelling fight against TB

Photograph by Alexis Huguet
Celumusa Hlatswako, an MSF mobile counselor, visits Winile, 39, XDR-TB patient & HIV-positive. They use sign language to communicate because Winile went deaf due to the side effects of the treatment. Matsapha airport, Manzini Region, Swaziland.

By Zanele Zwane, MSF Swaziland

“I was receiving injections every day. The MSF team would come here every now and then to make sure I got my injections. The Doctor says that is 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, and when she enrolled for HIV care. Swaziland has one of the highest rates of TB and Multi-Drug Resistant TB (MDR-TB) worldwide and 80% of people in Swaziland who contract TB are HIV positive.

Every year, on average 7000 people in Swaziland are diagnosed with Tuberculosis (TB), of which around 900 will develop Drug-Resistant TB (DR-TB). Of those treated for Multi-Drug Resistant TB (MDR-TB), 25 percent will suffer from hearing loss and deafness as a side effect of treatment.

Winile is one of these 25 percent.

She was diagnosed with Multi-Drug Resistant TB (MD-RTB) and started treatment in March 2013. Six months into her treatment, Winile lost her hearing. Along with this, she struggled with her treatment and in 2015 it became apparent that the disease was not responding and the tuberculosis bacteria had become resistant to the medicines used. In September 2015, she 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 means taking numerous toxic drugs, including daily injections for the first six months. The medicines can have severe side effects, with deafness, liver toxicity or kidney toxicity and psychosis at the most extreme end. 

But Winile is lucky in some ways: with her XDR-TB treatment, she is one of very few patients in the world who are being treated using Bedaquiline: in the last 50 years it’s one of only two new TB drugs. These new drugs have fewer side effects including no risk of hearing loss.

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 have been able to access bedaquiline and 405 patients have had access to Delamanid.

Swaziland was granted use of these drugs in 2014, and in 2015, MSF began supplying and supporting the Ministry of Health to treat patients using 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.

“To be cured of TB, an XDR TB patient needs to complete their full course of treatment as well as produce three consecutive negative cultures, meaning TB bacteria can no longer be found in their sputum, taken at least 30 days apart,” says MSF Doctor Veronica Polcova.

“Since she was switched to bedaquiline, Winile has shown steady improvement. 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,” she said.

Months later, Winile is also now 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 that she is able to provide for her children, who are currently living with her mother.

Winile, deaf from MDR-TB treatment side effects, learns sign language in the MSF Matsapha clinic, Manzini Region, Swaziland, 2016.
Winile learns sign language in the MSF Matsapha clinic. Matsapha, Manzini Region, Swaziland. Photograph by Alexis Huguet

MSF started working in Swaziland in 2007. It is estimated that more than 7000 people are diagnosed with TB each year in Swaziland, and of these, close to 900 have multi-drug resistant TB (MDR-TB). MSF works closely with the Ministry of Health to improve TB diagnosis and treatment, especially DR-TB, working in government health facilities in Mankayane, Matsapha, Shiselweni and Moneni. To help patients continue their treatment in spite of the often challenging side-effects including deafness and nausea, MSF teams go beyond providing medical care. They help patients cope by providing in-home care when possible and offering individual medical follow up and adherence counseling, group peer counseling, transport allowances, and housing support. This extends to food packages, occupational therapy, and sign language training (for patients who become deaf as a side effect of treatment).

Alongside this, MSF in Swaziland is using the newest drugs for patients with the hardest to treat symptoms. These drugs: bedaquiline and delaminid, are the first new tuberculosis drugs in almost 50 years, giving new hope of a cure to patients who previously had none. Along with being more effective, these drugs have less side-effects than older treatments that contain injectables (including no risk of full or partial deafness). While the new drugs show promising results, access to new TB drugs worldwide is limited. In October 2016, it was estimated that, globally, only 5,738 patients have been able to access Bedaquiline, and 405 patients have had access to delamanid.