Yury*, 38, is celebrating a moment he thought would never arrive: he has been cured of extensively drug-resistant tuberculosis (XDR-TB). This moment is also a milestone for Doctors Without Borders/Médecins Sans Frontières (MSF): Yury is the first patient to complete MSF’s tuberculosis treatment program in Belarus, run in close cooperation with the Ministry of Health. The program started in the summer of 2015 with revolutionary new TB drugs supplied through the endTB project, a partnership between MSF and other organizations. At the time, Yury and his doctors had been fighting the disease for two years.
Even while sitting in the sunshine, Yury does not take off his heavy jacket. He explains, “I’m afraid that I can catch a cold in the draught somewhere, and that would be stupid.” We are sitting on a bench beside a river bank in a big children’s park in the center of Minsk. The kids sweep past us on their scooters while their mothers, in summer dresses, can hardly keep up with them. Yury says he made a promise that while undergoing this treatment—his last chance at recovery—he would take care of his health and not risk squandering what he calls a “lucky” opportunity.
Yury learned he was sick in 2013. “For some reason, I started losing my appetite. I felt weak. I was losing weight, others told me that. Then I got a fever. I went to the polyclinic, I thought 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 asked me, ‘Do you know what you have?’ I said, ‘How would I know?’ They said ‘You have a suspected case …’” He stops before finishing the sentence. When he talks about TB, he rarely mentions it by name. Yury says that after learning what TB was, he became too scared to even mention it in public. He was in a state of panic for several months, not so much afraid for his life or health, but of how others might react.
“I thought everything had ended," he says, "that everybody would turn away from me. As they say: I’d be like a leper to others if they learn. I was hiding this for a long time when I was in hospital already. Not from my family though. On the contrary, I told them about my situation so that they’d check themselves just in case. You never know. But I was hiding this from the others.”
His first attempt at treatment took a year and was a failure. Because XDR-TB is resistant to both first and second-line TB drugs, the treatment regimen is lengthy and difficult. “When they poured more than 20 [pills] before me, everything went dark before my eyes," Yury says. "And, of course, they make you feel really sick. Such a high dose at once. You feel nauseous, weak. You’re feeling sick permanently. And it wasn’t just me who felt like this, everybody had it. In the morning they take the drugs, and you won’t see anyone until the evening, because everybody’s lying in bed. Somebody would throw up at once, others later.”
Several times, Yury’s tests came back negative, and he thought the disease had disappeared. But after a few months, he would test positive again. Just when he started to lose hope, doctors told him about a new treatment program from MSF. Yury agreed at once to be admitted to the program.
“My doctors told me, ‘This is the only chance.’ I had an advanced process with lung cavities growing already. It was getting worse and worse. I had drug resistance. They told me existing drugs won’t help,” Yury recalls. “And then it was immediate—in two days they inserted a port [an implanted system for continuous intravenous infusions] and the treatment started. Imipenem, Bedaquiline, and several other medicines. That’s it. And I started to improve immediately. I didn’t feel better, I had no appetite. But the tests, the X-rays—everybody was surprised! They said: ‘That’s something! It’s fantastic! You have such a good dynamic!’ And already in October I had clear tests. Everything was clear. Everybody was surprised—nurses, doctors. And of course they were telling me, ‘Don’t even think of skipping the treatment. You need to continue it.’”
New treatments, new technology
MSF doctor Mikhail Khmyz says the program targets patients with the most challenging forms of the disease. “The first patients we admitted were people on palliative treatment," says Dr. Khmyz. "It means they were receiving treatment for the relief of their symptoms, but no TB treatment.” This course is taken after a patient experiences repeated failures of treatment and the infection is resistant to available medicines. The last hopes for these patients are bedaquiline and delamanid, the first new TB drugs developed in nearly 50 years.
Since mid-2015, thanks to a grant from the Global Fund, these new drugs have been available to the Ministry of Health of Belarus. Unfortunately, there aren’t enough supplies of the drugs to meet the need, and doctors are forced to make difficult choices. When deciding how to distribute the medication they do have, doctors look at patients’ adherence to previous treatment regimens. According to a 2016 MSF survey, alcohol use disorder (AUD) is a key risk factor in Belarus for poor adherence.
“A major barrier to adherence to TB treatment is AUD," says doctor Parvati Nair, MSF’s Medical Activity Manager in the country. "The Ministry of Health of Belarus is aware of this, 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.”
MSF is working closely with the Ministry of Health to improve outcomes for patients with multidrug-resistant (MDR) and extensively drug-resistant tuberculosis (XDR-TB) and to help them stay on their treatment regimens without interruption. Ensuring the availability of a patient support service for mental health is a large part of meeting this goal. MSF counsellors and social workers are trained and assigned to provide psychological and social support to each of the patients.
“I see the counsellor’s task—and that’s how he sees his task as well—as not just helping the patient, but as motivating them,” Dr. Khmyz says. “Currently, for the ambulatory phase, we have a day hospital that is attended primarily by outpatients receiving Imipenem, an injectable, twice a day, in the morning and in the evening. Minsk is a big city. It’s difficult to come to the hospital twice a day from another part of the city,” Dr. Khmyz acknowledges.
For patients in Belarus who do not require injections, MSF’s new app is making it much easier to complete their treatment, which can take more than 24 months. The goal of this pilot project is to reduce the disruption to patients’ lives caused by taking multiple trips to the hospital every week to receive medication. With this new program, patients receive enough medication for several days. Then, medics help manage treatment remotely using an app installed on the patient’s phone that requires a video log to be uploaded each time a patient takes pills. Though the program is only in its early stages, there are hopes it will lead to a more flexible treatment plan for patients.
According to Yury, “You certainly get tired in two years. But what one can do? Thank god it has helped. If it wasn’t for this treatment, we wouldn’t be speaking here right now.” This thought seems to occur to him frequently. For patients like Yury who’ve gone from having no medical options to being cured, the combination of new technologies and new medications means more effective treatment. In some cases, it makes the difference between life and death.
Belarus has one of the highest rates of MDR-TB incidence, according to the WHO Global Tuberculosis Report, 2016. To address this, MSF supports the Ministry of Health at four TB facilities in the country: The Republican Scientific and Practical Center of Pulmonology and Tuberculosis (RSPC PT), 1st and 2nd City TB dispensaries in Minsk, and City TB hospital in Volkovichi, Minsk region. Every month, 70 to 75 patients are provided with psychosocial support, including counseling, food parcels, transport vouchers, and support from social workers, to help them stay on their treatment regimen. To date, MSF has provided treatment to nearly 60 patients with new TB drugs supplied through the endTB project.
*Last name withheld at patient’s request