SWAZILAND: A new lease of hope ushered for DR-TB patients
New Hope for DR-TB Patients
By Zanele Zwane, MSF Swaziland
“You see, I am healed. Even my legs don’t give me problems anymore. Now I can walk perfectly. I walk around the hospital; go out for fresh air and come back when I’m ready,” says an elated Tholakele as she walks around her ward demonstrating her recovery.
Tholakele, 39, has drug resistant tuberculosis (DR-TB) and started treatment in May 2016 at the MSF supported Moneni National TB Hospital in central Swaziland.
With 9.4 million new cases and 1.7 million deaths each year, tuberculosis (TB) is one of the developing world’s biggest killers; and 85 percent of cases occur in Asia and Africa. Swaziland also has one of the highest rates of TB and Multi-Drug resistant (MDR-TB) TB worldwide while 80% of people in Swaziland who contract TB are HIV positive.
Tholakele lives in Lwandle, about 15 kilometres away from the Moneni TB hospital, where she receives her treatment. Her husband is in South Africa where he works. For three months, she travelled by herself every day to and from the hospital for her injections, a routine she completed in August 2016. Despite this, she is not yet cured of TB and continues her treatment at home, taking tablets daily.
For this, Tholakele is relieved. It was while receiving injections that she suffered from severe leg pains, which eventually affected her ability to walk. Because she lived alone, and did not have anyone to help look after her, for two months, she was admitted to Moneni hospital in November 2016.
For many DR-TB patients like Tholakele, treatment is a long and gruelling two year journey involving between 15 to 25 toxic tablets every day and daily injections for the first six months. In some cases treatment can take longer if patients do not respond to the drugs. Side effects include deafness, liver or kidney toxicity and one of the most extreme: psychosis. This often forces patients to give up their jobs while on treatment and in countries like Swaziland, this makes the possibility of succumbing not to the disease, but poverty, high.
In a bid to help patients who’ve gone deaf or partially deaf, in Matsapha, where MSF operates a comprehensive healthcare clinic, eleven DR-TB patients and 30 MSF staff recently completed sign language training.
“Our DR-TB patients are often confronted by deafness as a side effect from Kanamycin, one of the DR TB drugs. Because of this, they can become isolated from their families and communities. This can easily affect their social life if not faced with proper support. By empowering them with this new communication skill, we hope to reintegrate them into society,” says Fundzile Msibi, MSF’s Psychosocial Coordinator.
This has proved true for Winile, an extensively drug resistant TB (XDR-TB) patient who lost her hearing in 2013, six months into her MDR-TB treatment. She is now enjoying the benefits of sign language. “I now use sign language to communicate with my children. I try to teach them what I have learned and we are able to communicate. My children are still young and they need me. Being able to use sign language will help me to continue to be a part of their lives”.
Alongside support from MSF, Swaziland has made great strides in alleviating the burden of TB treatment and bringing new hope to patients.
Since January 2014, DR-TB patients receiving treatment in Matsapha and Mankayane are treated using a shorter 9 to 12 months treatment course unlike the older 24 month treatment. With this treatment, patients receive daily injections for 4 to 7 months and tablets which they continue to use for the remaining five months. A total of 135 patients have started this treatment since it began in 2014.
Along with the shorter treatment, MSF in Swaziland is also using two of the first new TB medicines in over 50 years: Bedaquiline and Delamanid. These drugs are for patients with complicated cases of DR-TB who previously had no treatment options left. The medications don’t have the same extreme side effects as the older treatments, including hearing loss.
Already, the results from the use of Bedaquiline are very promising. So far, over 90 percent of the DR-TB patients treated with Bedaquiline have responded well and have converted within six months, meaning that TB bacteria can no longer be detected in their lungs and sputum. For TB patients: having access to new drugs with less side effects, and shorter treatment periods, is not only providing better medical outcomes, it’s bringing hope to people who previously had none.
** 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-affects 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 counselling, group peer counselling, 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 shorter treatment regimens (9 months instead of the usual 2 years), and for eligible patients, the newest drugs for the hardest to treat symptoms. These new 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-affects 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.
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TESTIMONY 2
NOW I AM BETTER: A Gruelling Fight against TB
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 per cent.
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 less 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, a 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.
** 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-affects 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 counselling, group peer counselling, 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-affects 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.
