In Zhytomyr, Ukraine, Doctors Without Borders/Médecins Sans Frontières (MSF) works with the Regional TB Dispensary to treat patients who have drug-resistant forms of tuberculosis (DR-TB). Most patients in this program can be treated with an all-oral course of medication—including the new medications delamanid and bedaquiline—instead of the painful injections that were previously used and caused serious side-effects. After patients are treated with a short course of DR-TB medication, they are discharged with additional treatments they can take at home, allowing them to get back to their lives, families, and careers sooner. But many patients still struggle to keep taking their medication for the full 9 to 12 months.
“When I got TB, I lost the will to live. My grandparents had told me that TB was a slow death,” said DR-TB survivor Natalia Tsopa.* “During the treatment, I felt ill and tired. I lost a lot of weight, too. I was irritable, I was depressed, and my psychologists, Vova and Lesya, counseled me. I used to speak with the psychologists about my family, my aspirations, and how to recover.”
Counseling and social support can help patients to continue their treatment even when it is difficult. “The goal of eliminating tuberculosis remains unreached, driven by multiple factors, including lack of patient adherence to treatment,” said MSF psychiatrist Iryna Yakymuk. “Mental health problems are one of the main reasons for this. Psychiatric and drug addiction diseases, as well as psychological problems such as social isolation, stigmatization, and self-stigmatization, all negatively affect patients' adherence to treatment.”
In order to enhance patient autonomy, MSF’s program offers a combination of directly observed (DOT), video-observed (VOT), and self-administered (SAT) therapies, tailored to the needs and capacities of the patients. In DOT and VOT therapies, a trained health worker observes patients as they take their prescribed drugs, either in person or through video-enabled smartphones.
Even with these systems in place, patients face other practical challenges. In MSF’s program, patient support teams of nurses, social workers, and psychologists work with DR-TB patients to understand and resolve potential barriers to completing treatment, from unpaid pensions to lack of gas or heating in their homes. DR-TB can be cured, but only if patients are able to complete their treatment. Coordinated patient support—including doctors, nurses, TB specialists, psychologists, and social workers—must be a central part of their treatment.
The following testimonies are from patients who were treated for DR-TB through MSF’s partnership with the Regional TB Dispensary in Zhytomyr. They reflect on their experiences with DR-TB and the MSF patient support teams that work with them to understand and resolve potential barriers to continuing treatment.
“I am now cured but there are still people who look at me differently” – Natalia Tsopa, former cook
My name is Natalia. I am from Moldova. I came to this country in 2005 when I married my husband, a Ukrainian citizen. I worked as a cook and now I get odd jobs like washing dishes in restaurant kitchens or working in retail. I live in a rural area and I have no neighbors. I had a small farm where I reared pigs and cows but now I work in Kyiv for the entire summer season.
In 2019 I had a swollen throat and an X-ray revealed I had tuberculosis. I was scared of going to a hospital, as I did not want to be fired from my job due to sick days. However, by March 2020, I was almost voiceless due to my swollen throat. While I was anxious about spending money on my health, I had no choice. I had to seek proper TB care. On May 24, 2020, I was referred to be admitted to the Zhytomyr Regional TB Dispensary. I was told that I had drug-resistant TB.
My family supported me but the rest of the community in the village kept away. I guess my medical information was not kept confidential. Every day I would go to the clinic in Korestan to receive medicine. Every time I walked to the railway station, I could feel all eyes on me. Everyone knew about my condition. I felt ashamed. It was difficult to cope.
During the treatment, I felt ill and tired. I lost a lot of weight, too. I was irritable but Vova, my psychologist, was patient and tolerated my moody behavior. The staff in the hospital and the health workers in the TB ambulatory—an outpatient clinic—were helpful, attentive, and good-natured. I was depressed and my psychologists counseled me.
I felt better after a month of being on this treatment. I used to speak with the psychologists about my family, my aspirations, and how to recover. Once I came home, I also received food parcels, hygiene kits, soap, and detergents as part of my treatment.
My condition improved; I gained weight and felt hungrier than I did before I fell ill. I want to tell all patients not to be afraid and to continue treatment. People are scared of hospitals due to fear of how they will be treated by health workers, family, or community—not to mention the high costs of treatment. I am now cured, but there are still people who look at me differently. I ignore them. I am looking forward to living with my children and family again.
**“People can lose hope but I don’t want to” ***– Bohdan Cherniv,* electrician*
My name is Bohdan Cherniv* and I am an electrician. This is the third time I have been admitted to this TB facility. I was 24 when I was first diagnosed with TB.
My father was an electrician and died of TB in 2015. He used to tell me that I had inherited his illness. I have great hopes for this treatment. I wish it was available to my father who, like many others, would not then have been sent home because there were no medicines or they were prohibitively expensive.
I have been using the internet to read about available DR-TB treatments and drugs in Ukraine. While the nurses and social workers do give me information on side-effects and cure rates, I do my own research too. The treatment here is good. If you have the desire then you can be cured. You have to stick with the drugs and the treatment regimen and of course lead a healthy lifestyle.
People can lose hope but I don’t want to. I regularly speak with the psychologist in this facility. I want to get back to work. I would like to get married and start a family.
“Having a plan helped me cope” – Vitalii Gorbachov, age 56
Before I fell ill, I did everything. I used to hunt and grow my own crops. I have a farm. I grow wheat and corn among other crops. I was also stationed in Germany and served in the military. I have a brother in my family who is married and has kids. I live with him. Life before TB was normal. I was active. I worked by day—in sowing season you need to work all day. Some days I would fish. In the evenings I would join my friends for a drink.
It was quite spontaneous. I took a sample of sputum to get tested. I am also a cook and wanted to get a job [that] required a medical test. My brother had TB in November 2020. He was cured in spring and spent time in the TB sanatorium. He had shortness of breath, insomnia, and a fever. When my test results came, I found out that I had DR-TB. In November 2020, I was admitted to the TB Dispensary in Zhytomyr.
To realize I was ill was unpleasant. I was in shock. I did not believe it could happen to me. I was really beaten by this disease.
My family understood and no one said anything negative about me. I have not lost any of my friendships in the village. With the inpatient treatment, I did not feel any side effects, but it did affect my eyesight. In the ward, I witnessed many patients with alcohol or substance abuse disorders. Living with TB and addictions can be a tough life.
I was in the hospital for four months. On March 3, 2021, I was discharged. When I was in the ward, I began to make plans for my farm. I asked MSF for some seeds. The patient support supervisor is also a gardener and she helped me to get these seeds. I think having a plan helped me cope.
While the medicine was very effective, the psychologist would ask me many questions: Are you sad? What troubles you? I could not have said much: I want to travel, I want to go everywhere, but it is difficult to be employed. I like to read. I have read Pushkin, Chekhov, and Solzhenitsyn but prefer to read military accounts.
I want to carry on with my life and complete my treatment. I’d like to meet a woman, get married and start a “nest.” I want to say to other patients, if you don’t start the treatment, [it is quite likely that] you will die. TB can be cured—you just need to start treatment.
*Name changed at request of patient