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Support goes beyond medication

Tuberculosis patients in Swaziland

By MSF

March 9^th, 2017

Nomvula, a 30 year old mother of five in Swaziland, was employed in a factory before she became too unwell to work, struck down by coughing and with chest pain. She was later diagnosed with Multi-Drug Resistant Tuberculosis (MDR-TB). Swaziland, where Médecins Sans Frontières (MSF) has worked since 2007, has one of the highest rates of TB and Multi-Drug Resistant TB (MDR-TB) worldwide.

"I had to leave my newborn baby (at three weeks old) so I could be admitted at the National TB Hospital for treatment. And when I got home, my boyfriend had stolen my things. This upsets me very much."

For many patients like Nomvula, tuberculosis (TB) treatment is a long and grueling 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 don’t respond to the drugs.

TB is caused by bacteria that are spread through the air when people infected with the disease cough or sneeze. The disease most often affects the lungs, with symptoms including a persistent cough, fever, weight loss and chest pain. While anyone can be infected with TB, people with weakened immune systems, including those with HIV, are at particular risk.

The National TB Hospital. Moneni, Manzini Region, Swaziland.

Nomvula was a factory worker before she got sick.

During Nomvula's MDR-TB treatment, she lives alone, separated from her relatives to prevent them from TB contamination.

A blanket and a respirator on the floor of Nomvula's house, an MDR-TB patient in Swaziland.

With 9.4 million new cases and 1.7 million deaths each year, TB is one of the developing world’s biggest killers; and 85 percent of cases occur in Asia and Africa.

One of the biggest challenges for people with TB is not just accessing medical care, it’s the often horrific side effects of the drugs they must take as part of their treatment. This includes nausea, sleeplessness, hearing loss and in some extreme cases: psychosis.

In 2015, MSF had more than 20,000 patients on TB treatment in 24 countries, including 2,000 with DR-TB.

Dr. Yuan Huang MSF staff, is checking on Nompumelelo, a 34 year old MDR-TB patient at Mankayane hospital in the Manzini Region of Swaziland.

Nompumelelo, 34, an MDR-TB patient at Mankayane hospital, in the Manzini Region, Swaziland.

Dr. Yuan Huang, MSF staff, is checking Nompumelelo’s chest x-rays to see how her treatment for MDR-TB is progressing.

Sifiso, 41, is an Extensively-Drug Resistent TB (XDR-TB) patient, who, along with 80 per cent of TB patients in Swaziland, is HIV-positive.

He is on a 24-month treatment schedule and also suffers from epilepsy. He takes about 12 to 15 tablets daily (including medication for HIV). He says his relatives left him to live alone because of his mental troubles. Yenziwe Malaza, MSF Psychosocial Supervisor for the Moneni project, visits him often to monitor how his treatment is going and help him manage the side effects.

Sifiso (left), is a 41 year old XDR-TB patient. Here he is with Yenziwe Malaza, an MSF Psychosocial Supervisor from the Moneni project.

Inside Sifiso's house. He's a 41 year old XDR-TB patient and is HIV-positive.

MSF staff pay a home visit to Winile. She's 42 years old, and has suffered an MDR-TB relapse. In 2014, she was cured, after a 9-month treatment. Unfortunately, the disease then returned, this time in a more complicated form: it was now less responsive to the available drugs. She was later diagnosed with Extensively-Drug Resistent TB (XDR-TB) in February 2016.

"I believe that acceptance is the key for a successful treatment."

An MSF team pays a home visit to Winile. She's 42, and has had an MDR-TB relapse. Mankayane area, Manzini Region, Swaziland.

Winile, an XDR-TB patient, listens to an MSF Mobile Counsellor who is helping her manage the side effects.

Yenziwe Malaza (right), an MSF Psychosocial Supervisor, visits Winile, a 42 year old XDR-TB patient. Here she speaks with Winile's mother.

In Mastapha, where MSF operates a healthcare clinic, sign langauge workshops were introduced for patients who’ve gone deaf or partially deaf as a result of their treatment.

“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. By empowering them with this new communication skill, we hope to reintegrate them into society.”

Fundzile Msibi, MSF’s Psychosocial Coordinator

Celumusa, an MSF mobile counselor, during a sign language training at the MSF Matsapha Clinic.

Celumusa, an MSF mobile counselor, communicates in sign language with patients who are deaf as a result of their treatment.

"Some of the patients are now deaf, so we are very motivated to be able to talk with them" Celumusa, MSF counselor

XDR-TB patient Winile M., who has lost her hearing as a side affect of treatment, speaks in sign language to Celumusa Hlatswako, MSF mobile counselor. He asks which Hospital she was originally admitted to. 'Mbabane' Winile M. answers.

Norman, 40, started MDR-TB treatment in August 2016. He moved to an MSF "half-way" house for patients who live too far away from the Hospital or Clinic for regular medication and check-ups. On this day, the MSF team and his three housemates, who are also MDR-TB patients, organized a party to celebrate his birthday.

"My (TB) diagnosis came as a shock especially because it meant that I had to separate from my family."

Norman, 40, started MDR-TB treatment on Aug. 2016 and moved to MSF’s Cana "half-way" house.

The MSF team organized a birthday party for Norman, 40, MDR-TB patient, who has been living in the MSF Cana "half-way" house for 3 months.

Winile M. is an extensively drug resistant TB (XDR-TB) patient who lost her hearing in 2013, six months into treatment as a result of the daily injections.

“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.”

She recently completed MSF’s sign language training course.

“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.”

Winile, who is deaf due to the side effects of the MDR-TB treatment, learnt sign language at MSF's Matsapha clinic.

Falakhe (right), the son of Winile’s neighbours, learnt sign language with her after Winile lost her hearing as a result of MDR-TB treatment

Winile, an XDR-TB patient, on her way home after her sign language graduation ceremony at MSF's Matsapha Clinic.

In a bid to help lessen the disruption caused by TB treatment, MSF is using shorter TB treatment regimens: 9 months instead of the usual minimum of 2 years, and for eligible patients, the newest drugs for the hardest to treat symptoms. These new drugs: Bedaquiline and Delamanid, are the first new tuberculosis drugs in almost 50 years. Along with being more effective, they have less side effects and pose no risk of full or partial deafness.

While the new TB drugs show promising results, access to new TB drugs worldwide remains 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.

To find out more about MSF’s campaign to find shorter, more tolerable TB treatment and improve patient access to newer drugs, visit www.msfaccess.org/our-work/tuberculosis

Footnotes

Photographs by Alexis Hughet/MSF

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FootNotes

Photographs by Alexis Hughet/MSF