21 October 2016

Through her grandmother’s love, and the help of new DR-TB drug delamanid, a 16-year-old from Khayelitsha has been given a second chance.

Sinethemba is back to her normal daily life following the results of DR-TB treatment including Delamanid. Photo: Sydelle WIllow Smith / MSF

Last Christmas was a less than festive time in Vuyisiwa Madubela’s small two-bedroom house in Khayelitsha, Western Cape.

Her granddaughter Sinethemba Kuse – whose mother had died when she was a baby -  had just been diagnosed with multi-drug-resistant tuberculosis (MDR-TB).  “Imagine being told that you have MDR-TB just before Christmas,” 16-year-old Kuse says.

“That day, I lost hope. I thought she was going to die,” says Vuyisiwa who had taken Sinethemba into her care only days earlier, adding to four other family members already living with her.

Her illness was difficult for everyone.

Sinethemba Kuse, 16 years, lives with her grandmother Vuyisiwa Madubela and four other family members in a two bedroomed home in Zone C29, Khayelitsha. Photo: Sydelle WIllow Smith / MSF

“During her first month with us in Khayelitsha, it was terrible – she wouldn’t eat, we’d all just watch her. Everyone was sad. When I wanted to cry, I had to go outside,” she continues

“By end December she started MDR treatment which included painful daily kanamycin injections.The injections werepainful and some days she asked not to go to the clinic.”

By early February 2016, further test results on her sputum eventually showed resistance to the injectable agent and that Sinethemba actually had pre-extensively drug resistant TB (pre-XDR-TB . She needed new drugs and a change in treatment.

“Then MSF came and explained that they could apply for a new drug for Sinethemba called delamanid if I gave my permission for her to receive it, because the drug is not usually available for DR-TB patients in South Africa,” Vuyisiwa says.

She gave her permission and Sinethemba took her first delamanid tablets on 8 February.

DR-TB, tuberculosis, drug resistant tuberculosis, khayelitsha
Sinethemba takes her daily regimen for XDR-TB at 10am each day, with two additional delamanid tablets at night. Photo: Sydelle WIllow Smith / MSF

“The first few days she had nausea, wanting to vomit. I sat her down and I said: ‘You have to accept this; you must talk to your tablets. You must give them an order: I am in charge.’”

“Not even a month later, she started speaking, even dancing. She’s going to church, she’s singing in the church choir. Everyone wanted to know what happened.”

“I’ve seen a huge improvement, says MSF’s TB doctor Jennifer Hughes says. “We pay particular attention to young patients so that we can share our experience and add to the limited information available on using delamanid in under-18s.”

MSF patients, says Dr. Hughes, have reported fewer side effects related to delamanid compared to other DR-TB medications.

Today, Sinethemba is one of the lucky ones. She has had negative monthly sputum cultures since March 2016 and there are no longer signs of active TB in her system.

“This means the disease is under control and she is highly unlikely to pass on the resistant bacteria to anyone else,” says Dr Hughes. “If she sticks to her treatment well and her sputum cultures remain negative by September 2017, she’ll be discharged as cured of DR-TB,” she adds.

Delamanid is such a critical drug for Sinethemba, given her limited options, that MSF has successfully applied for her to receive a further six months of treatment

Vuyisiwa says, “I see lots of TB patients at the TB clinic. If people got this drug, they could really control DR-TB. I would ask the manufacturer of delamanid to give it to every patient who really needs it.”

“TB is a giant but not a killer. TB can be cured.”

Read Sinethemba’s story in her own words here.

Find out more about MSF's work in South Africa.