Yury, 38, is celebrating a moment he thought would never arrive: he has been cured of a complicated form of tuberculosis (TB), an infectious disease caused by mycobacteria that usually attacks the lungs.
Yury’s cure also marks a milestone: he is the first patient to complete treatment at MSF’s TB treatment programme in Belarus, which is run in close cooperation with the Ministry of Health. The programme started in summer 2015, with revolutionary new TB drugs supplied through MSF’s endTB project. By that time, Yury and his doctors had been fighting the disease for two years, facing a form of extensively drug resistant tuberculosis (XDR-TB). Treating XDR-TB is a lengthy and difficult process because it is is resistant to first- and second-line TB drugs.
Yury learned he was sick in 2013.
“I started losing my appetite, I felt weak and I was losing weight,” he says. “Then I got a fever. I went to the polyclinic thinking it was a common cold. They did an X-ray and even found a small hole. As soon as I had my chest X-ray results they said: ‘You have a suspected case…’”
Yuri doesn’t end his sentence. When he speaks about TB, he rarely mentions its name. He explains that after his diagnosis, he was in a state of panic for several months, not so much because he was afraid for his life or health but because he was concerned about the reaction of the others.
“I thought everything had ended, that everybody would turn away from me,” he says. He informed his family so they could get themselves checked but didn’t tell anyone else, even when he’d been in hospital for a long time.
After Yuri had undergone a year of treatment, the doctors realised that his XDR-TB was resistant to the available medicines.
“When they poured more than 20 pills before me, everything went dark before my eyes,” he says, explaining that the high dose of drugs made him feel permanently sick and weak.
“It wasn’t just me who felt like this. In the morning everybody takes the drugs and you won’t see anyone until the evening because they’re all lying in bed.”
Several times, it seemed that the disease had abated and the tests would come back clear. But a few months later, they were positive for TB again. Just when Yury had begun to lose hope, the doctors told him about MSF’s new treatment programme. He agreed to be admitted for treatment with MSF at once.
“My doctors told me: ‘This is the only chance,’ he recalls.
Within two days, he was fitted with a port – an implanted system that allows continuous intravenous infusions. The treatment with imipenem, bedaquiline and several other medicines began.
“I started to improve immediately,” says Yury. “I didn’t feel better – I had no appetite. But the tests, the X-rays – everybody was surprised!”
By October, Yury’s tests were negative. The doctors and nurses told him not to even think of skipping the treatment, that he needed to continue with it.
MSF’s Dr Mikhail Khmyz says the MSF programme targets patients with the most challenging forms of the disease.
“The first patients we admitted were people on palliative treatment. That means they were receiving treatment for the relief of their symptoms, but no TB treatment,” he explains.
That’s what happens when a patient has suffered repeated failures of treatment and the strain of the infection is resistant to available medicines. The last hope for these patients is bedaquiline and delamanid, the first new TB drugs to be developed in nearly 50 years.
Addressing poor adherence
Since mid-2015, the Belarusian Ministry of Health has had these drugs at its disposal, thanks to a grant from the Global Fund. But it’s not enough to supply all those in need of the treatment, so doctors have to make tough choices. One of the deciding factors is adherence to treatment in previous stages. In Belarus, a key risk factor for poor adherence, according to an MSF survey conducted in 2016, is alcohol use disorder (AUD).
Doctor Parvati Nair, MSF’s medical activity manager in Belarus, says the Ministry of Health of Belarus is aware, and has indicated its willingness to work with MSF on this.
“We are now in the process of negotiating the details of an approach that addresses both issues to enable TB patients suffering from AUD to have a good outcome to treatment,” he explains.
MSF is working closely with the Ministry of Health to improve outcomes for patients with multidrug-resistant and extensively drug-resistant tuberculosis and help them stay on treatment. For the latter objective, ensuring there’s a patient support service for mental health is important. MSF counsellors and social workers are trained and assigned to provide psychological and social support to each of the patients.
Dr Khmyz says part of the counsellors’ task is to motivate patients.
“For the ambulatory phase, we have a day hospital that is attended primarily by outpatients receiving imipenem, an injectable, in the morning and in the evening,” he explains. “Minsk is a big city; it’s difficult to come to the hospital twice a day from another part of the city.”
Technology brings hope
But it’s not just new treatments and medications providing hope for TB patients: new technology also plays a part. For some patients in Belarus who are not on a treatment that requires injections, a new app is making their treatment, which can last up to and beyond 24 months, easier.
This pilot project aims to lessen the disruption to patients’ lives by ensuring they don’t have to make multiple trips to the hospital to take their medication. Patients receive enough medication for several days and medics help them manage the intake of the drugs with an app installed on the patients’ phones that requires a video ‘log’ each time they take their pills. This treatment option is only in its early stages, but it’s hoped it will lead to a more flexible treatment plan for patients.
‘You certainly get tired in two years, but what can you do?” says Yury. “If it wasn’t for this treatment we wouldn’t be speaking here right now.”
For patients like Yury, who’ve gone from having no medical options left to being cured, a combination of new technologies and medications means more effective treatment and – in some cases – the difference between life or death.
The 2016 WHO Global tuberculosis report ranks Belarus as one of the highest-burden MDR-TB countries. MSF is supporting the Ministry of Health in four TB facilities to address these high rates: the Republican Scientific and Practical Centre of Pulmonology and Tuberculosis (RSPC PT), 1st and 2nd City TB dispensaries in Minsk, and City TB hospital in Volkovichi, Minsk region. Around 70 to 75 patients each month receive psychosocial support (counselling, food parcels, transport vouchers, support by social workers) to help them stay on their treatment. MSF has so far provided treatment to nearly 60 patients, with new TB drugs supplied through the endTB project. Working in 15 countries, endTB is a partnership between MSF, Partners in Health, Interactive Research & Development and donor UNITAID that aims to find less toxic and more effective TB treatments. You can read more about the programme at endTB.org.