Hear from our patients about how new TB treatments have improved their lives
Health ministers from around the world are meeting in Moscow this week to discuss tuberculosis (TB) treatment. Médecins Sans Frontières (MSF) is calling on governments to step up and increase access to TB diagnosis and treatment, including newer TB treatments.
To show how newer TB treatments can improve our patients' lives, in the Chechen Republic of the Russian Federation, the first new drugs to be developed in 50 years have given hope to people with extensively drug-resistant tuberculosis (XDR-TB).
We have run a TB treatment programme with the Chechen Ministry of Health since 2004. The programme includes TB diagnostics, treatment, laboratory services, and health education, as well as adherence counseling and psychosocial support for patients and their families.
TB kills around 1.6 million people a year and was recently declared the deadliest infectious disease in the world. It is particularly threatening and hard to treat in its drug-resistant forms.
The crucial moment in the programme’s history came when bedaquiline and delamanid, the first new TB drugs to be developed in nearly 50 years, became available.
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In 2014, MSF brought these to the Chechen Republic programme and start patients with XDR-TB on the new treatment regimens.
Since then, 156 patients involved in the TB programme have been put on treatment regimens containing bedaquiline, delamanid or a combination of both. Most had no other treatment options and probably would not have survived without them. So far, the results are very promising.
In 2015, MSF’s Maria Borshova first spoke to patients who had just started their new two-year long treatments. Two years later, she met them again. Tamerlan, Khavani, and Movsar are among them.
Tamerlan: “This new treatment is much easier to tolerate.”
When I first met Tamerlan in 2015, he was 43. He looked exhausted. He was serious and reserved, but quite open to sharing his thoughts and experiences.
You could tell by the way he spoke, he was well educated; he has a degree in radio engineering. Tamerlan was diagnosed with TB while in prison in 1998 and was treated in the prison hospital.
Prison and war play a part in the stories of many of our patients here.
“People avoid those with TB, they’re afraid of them,” he told me. “But that is wrong.”
Later, the TB returned. After being diagnosed with XDR-TB in 2015, Tamerlan joined the MSF programme and started on a new treatment containing bedaquiline. He was determined to complete the treatment despite the challenges.
Two years later, we meet in the same hospital, where he has come for a follow-up check. In two months, he will complete his treatment.
“I’d been carrying this disease within me for 17 years,” says Tamerlan, who is now employed as an engineer, a job he loves.
“You should get treated, take your medicines. This new treatment I’ve been taking for the last two years is much easier to tolerate than what I was given before.”
Khavani: "You need a goal and patience; I did it for my children.”
For Khavani, a 26-year-old young mother of three, TB has been a family tragedy. She lost her mother to the disease.
Her sister and brother were also infected but completed their treatments.
Khavani was diagnosed with TB in 2003 and then again in 2013 after her third child was born.
The second time, she was diagnosed with pre-XDR-TB, a form of TB that is resistant to the most effective first-line TB drugs and one of the two groups of second-line drugs.*
She became MSF’s first patient in Chechnya to be treated using the new drug, delamanid.
I first tried to visit her when she started the treatment, but she was too weak. I waited a couple of days until the doctors told me she was strong enough to talk.
Khavani looked like a fragile teenager. She told me she was feeling much better since starting the new treatment. She believed it would help her.
"I did it for my children. It's so hard to live without a mum - my mother died of TB."
Two years later, Khavani has gained 18 kilos and looks radiant. She’s about to complete her treatment and is preparing for an important occasion: her eldest daughter is six and will be starting school this year.
“I didn’t believe this day would come,” she says excitedly.
She explains how she got through the treatment. “The main thing is to have a goal in life. I did it for my children. It’s so hard to live without a mum – my mother died of TB. You need a goal and patience. Of course, it’s difficult, but you have to keep going.”
* First-line TB drugs are used to treat ‘regular’ drug-sensitive tuberculosis, the treatment course usually takes just six months. Second-line drugs are used when first-line TB drugs don’t work. The patient is resistant to them, meaning he/she has a drug-resistant strain of TB. The treatment course for DR-TB is much longer, up to two years. The drugs are toxic and have severe side effects.
Movsar: “The most important thing is to believe you will be cured.”
Movsar, from Novye Atagi village in Chechnya’s Shali district, was one of the first MSF patients there to undergo treatment with bedaquiline.
In 2010, the former humanitarian worker was diagnosed with TB, in 2011 with multi-drug-resistant TB and, in July 2014 with XDR-TB. In August 2014, he was started on a new treatment programme.
Movsar was also treated for diabetes, with MSF providing test strips to check his sugar level and medications. When I met him at the hospital in 2015 he seemed calm and patient. He had a warm, but a somehow sad smile on his face.
“I was told that if I followed treatment, I would be cured,” he said. “So I tried to follow treatment strictly. I took the medicines, I had intravenous fluids. These pills had very strong side-effects. I have diabetes and heart problems, so there’s a whole bouquet of illnesses.
"The bedaquiline was very difficult to tolerate at first, but after a month or two it was OK.”
Movsar said the MSF counselors helped him a lot. “I was able to ask all kinds of questions and they would explain everything.”
Movsar successfully completed his treatment in August 2016. Now 51, he lives together with his big family in their village. “At home, it’s better than in the hospital, of course,” he says.
And although Movsar thinks the current treatment for XDR-TB takes too long, he’s positive that a solution will be found.
“Those who were on treatment with me in the hospital are all fine now,” he says. “The most important thing is to believe that you will be cured. A lot depends on belief. They will think of something to find a cure for this.”