South Africa has one of the highest burdens of tuberculosis (TB) and drug-resistant tuberculosis (DR-TB) in the world, with more than 20,000 people diagnosed with DR-TB in 2015. Yet the current DR-TB treatment regimen—which consists of a combination of multiple pills and daily injections—is only successful in about half of all people who receive it. New drugs such as delamanid offer the opportunity to provide more successful, tolerable treatment regimens to patients with few other options available. Here, patients successfully taking delamanid as part of their TB treatment regimens in Khayelitsha township, Cape Town, South Africa, tell their stories.
Sinethemba Kuse: "TB is a Giant, but Not a Killer. TB Can Be Cured"
Current Treatment Regimen: Delamanid, linezolid, pyrazinamide, ethambutol, clofazimine, high-dose levofloxacin, terizidone
Read Sinethemba’s story in her own words: http://blogs.msf.org/en/patients/blogs/tb-me/tb-me-this-is-how-my-journey-starts
Through her grandmother’s love, and the help of new DR-TB drug delamanid, a 16-year-old from Khayelitsha got a second chance at life.
Last Christmas was a less-than-festive time in Vuyisiwa Madubela’s small two-bedroom house in Khayelitsha.
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," says 16-year-old Kuse.
"That day, I lost hope. I thought she was going to die," says Vuyisiwa, who took Sinethemba into her care just days earlier. Sinethemba joined four other family members already living with her grandmother. Her illness was difficult for everyone. "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. By end December she started MDR treatment, which included daily kanamycin injections.The injections were painful and some days she asked not to go to the clinic."
By early February 2016, further test results on Sinethemba's sputum 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 February 8. "The first few days she had nausea, wanting to vomit," says Vuyisiwa. "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 TB doctor Jennifer Hughes. "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 patients under 18 years old." MSF patients, says Dr. Hughes, report 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."
Delamanid is such a critical drug for Sinethemba given her limited options that MSF successfully applied for her to receive a further six months of treatment. "I see lots of TB patients at the TB clinic," says Vuyisiwa. "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."
Simphiwe Zwide: "I’m Strong and I Want My Health Back"
Current Treatment Regimen: Delamanid, bedaquiline, linezolid, levofloxacin, terizidone, clofazimine, ethionamide
A family man has a second shot at beating XDR-TB with the newest DR-TB drugs.
In 2011, Simphiwe Zwide’s wife Nomonde contracted tuberculosis. Simphiwe spent more than a week with her in Cape Town’s Groote Schuur Hospital. "I wasn’t using a mask," he says. "When she came out of hospital, I fell sick."
Soon after, Simphiwe was diagnosed with multi-drug resistant TB. "I probably got MDR-TB there," he says. "I couldn’t eat, my body was painful, my throat was sore—I thought I had a virus. My wife tried to cook—sour milk and maize meal. I couldn’t swallow. I had to drink many cups of water. I was sweating—I couldn’t walk even a couple of meters. My wife was very supportive of me. She would leave me taxi money and go and stand in the hospital queue for me from 5:00 a.m.
As a result of the care and medication, Simphiwe began to feel his health returning. "I felt like I could work again," says the 43-year-old, who is his family’s only breadwinner. "We were all suffering. I was the only one who could work for my family. I was taking kanamycin injections, which meant that I had to attend the clinic every day, and this was preventing me from finding a job."
Simphiwe’s need to find work saw him traveling between Cape Town and Johannesburg for the next few years. As a result, his MDR-TB treatment regimen fell to the wayside. MSF tuberculosis doctor Jennifer Hughes says Simphiwe was in line to receive a strengthened treatment regimen for pre-XDR-TB in 2012, but before he was able to start the new medications, "he disappeared from Khayelitsha . . . we heard later that he’d gone to Johannesburg, maybe looking for work. He was discharged as 'lost from treatment. It’s normal for people to find the 24-month treatment difficult to stick to," Dr. Hughes says. "They are often forced to stop work because the treatment makes them drowsy and nauseous."
"By January 2016, I started to get sick again," says Simphiwe. "I couldn’t work like I’m used to. I came back to Khayelitsha." When Simphiwe finally returned to his local clinic in June 2016, he was short of breath and very ill. Repeat sputum culture results revealed he now had XDR-TB, which meant that he was eligible for the new drugs, bedaquiline and delamanid. Simphiwe started his new multidrug regimen, including linezolid and bedaquiline, on October 8. He is now being treated at the local Kuyasa clinic, and has to take up to 26 pills a day to treat his XDR-TB. On October 13, a six-month delamanid course was also added to his treatment regimen.
"When I take them [the medicine], I have to sleep the whole day," Simphiwe says. "But I’m feeling much better. I can’t say I’m 100 percent, but this is only my third month. I know who I am—I’m strong and I want my health back."
Nonyanyiso Baloi: "I’m Doing Everything I Couldn’t Do Before”
Current Treatment Regimen: bedaquiline, delamanid, linezolid, clofazimine, levofloxacin, ethambutol, terizidone
Nonyanyiso Baloi, a 32-year-old mother of three with XDR-TB, experienced serious side effects from the medication she was taking. But a combination of the newest DR-TB drugs, delamanid and bedaqualine, gives her hope.
Nonyanyiso Balo lives with her children and aunt in Khayelitsha, Cape Town, South Africa, in the same house she has lived in since 1989.
At the beginning of April 2016 she showed symptoms of TB. A chest X-ray at her local clinic suggested she had TB and doctors started her on regular treatment immediately. "I lost weight, had no appetite and was vomiting a lot," says Nonyanyiso. "I was always tired." The illness made it difficult for her to take care of her eight, six, and four-year-old children.
At first, Nonyanyiso’s liver reacted badly to the first-line TB drugs she was given and she developed severe jaundice. She was switched to a three-drug "liver-friendly" regimen—which includes the injectable drug kanamycin—with a plan to reintroduce the regular drugs individually while her liver recovered, explains MSF TB doctor Jennifer Hughes.
"Unfortunately, she developed hearing loss only four days later, so the kanamycin was stopped on April 17, 2016, leaving her with just a few treatment options," Dr. Hughes says. "Then a delayed sputum result finally reached the clinic on April 19: she actually had MDR-TB."
Nonyanyiso’s liver function improved sufficiently by early May, and, through the Department of Health, her local doctor applied for newer TB drugs, including bedaquiline, as an alternative to the injectable agent that had caused the hearing loss. "While waiting for the drugs to be approved, she developed deep vein thrombosis (a blood clot) in hospital and had to receive a blood transfusion due to severe anemia," says Dr. Hughes. "By mid-May, just before starting the new medication, we received the final test results of the original sputum sample: she had pre-XDR-TB! Nonyanyiso either had bad side effects from some drugs or the drugs were ineffective against her drug resistance pattern—we desperately needed more options."
Nonyanyiso’s doctors applied to MSF for delamanid to be added to the bedaquiline-containing regimen. At the end of May, approval came through, and in early June, she started taking delamanid and bedaquiline along with five other drugs. "When delamanid was added to her regimen, her sputum cultures were still positive, showing that TB was still actively growing in her lungs. However, once established on an effective regimen, she has tolerated the treatment well," Dr. Hughes says. "Today, Nonyanyiso has overcome the worst and is on the road to recovery. In August, her sputum cultures were confirmed negative and we’re waiting for the September results. She’ll need to continue treatment and maintain negative sputum results for another 18 months before she can be declared cured."
Nonyanyiso is relieved. "I’m happy I got this treatment, because I couldn’t even walk back then," she says. "But if I see myself now, I’m doing everything I couldn’t do before."
Simbongile Xesha: "The Medication Makes Me Strong"
Current Treatment Regimen: bedaquiline, linezolid, clofazimine, terizidone, levofloxacin, pyrazinamide
After losing her partner to XDR-TB, a 29-year-old working mother continues her own fight against the disease.
"My partner had XDR-TB, so I probably caught it from him," says Simbongile Xesha, who lives with her children and five other family members in Town II, Khayelitsha. After her partner, who passed away in May 2016, was diagnosed with XDR-TB, Simbongile sought help for the symptoms she was experiencing. "Last year, [at the end of] September, I started coughing and didn’t want to eat," she remembers. "I brought myself to the clinic and, within a week in October 2015, I started full treatment for XDR-TB, which included bedaquiline."
"Simbongile is a model example of how we would like the majority of clinically stable DR-TB patients to be managed at a primary care level within the community," says MSF tuberculosis doctor Jennifer Hughes. "After her partner was diagnosed with XDR-TB, she presented to her local clinic, was screened appropriately, and quickly diagnosed with XDR-TB, taking advantage of the rapid diagnostic tools that we have available here."
After diagnosis, Simbongile was immediately identified as eligible to receive bedaquiline and linezolid through the Department of Health’s bedaquiline access program, and an application was submitted. "Once approved, her medication was delivered from the specialist TB hospital to her local clinic so that she was able to start effective treatment for XDR-TB within only a few weeks of presenting to clinic for TB screening," says Dr. Hughes. "Instead of long-term admission or hours of travel to a hospital, she’s getting her treatment regularly from her local primary care clinic."
"I know from Dr. Jenny that many patients need bedaquiline," says Simbongile. "I didn’t have to wait and was taking bedaquiline from the first day of treatment. I think that’s why my sputum started to change so quickly. I stick to my treatment, same time every day, and I go to a support group.” Her sputum cultures are now negative, Dr. Hughes says, indicating that the treatment is working and there are no longer active TB bacteria growing in her lungs.
Today Simbongile says she is happy living with her mother, two sisters, and all of their children. "I work as a cashier at a frozen yogurt place in Khayelitsha," she says. "I feel great. I’ve been taking bedaquiline for six months now. I take all the tablets at the same time. The medication makes me very nauseous and knocks me out for one or two hours. But it makes me strong too."