Maya* vividly remembers the day she received her diagnosis. As a 21-year-old college student in Astana, Kazakhstan, she’d been running persistent fevers and waking up drenched in sweat. Her mother insisted she get checked out. As they waited for test results, the doctor came in to deliver the news: the sputum culture test came back positive for tuberculosis (TB), and Maya would need to start treatment immediately. Hearing the crushing news, Maya’s thoughts began to spiral: “Why me?” she asked herself. “I didn’t deserve this. What’s going to happen to my future?” Maya’s mother broke into tears. Although Maya remained calm on the outside, she was devastated: “It felt like the end of life.”
That same day, Maya was transported to the TB unit at the City Center for Phthisiopulmonology in Astana. The City Center hospital works with Partners In Health (PIH) on combating drug-resistant TB in Kazakhstan, which has some of the world’s highest rates of TB and multidrug-resistant TB (MDR-TB), a deadlier and more difficult to treat form of the disease.
After being admitted to the hospital, Maya joined the endTB clinical trial—a part of the Expand New Drug Markets for TB (endTB) project launched in 2015. Surrounded by other patients and local clinicians supported by PIH, Maya began the process of accepting her situation. “I realized that there was nothing I could do about my diagnosis, except to move forward with treatment,” she said.
Tuberculosis is the second deadliest infectious disease in the world, making testing, treatment, and care vital—especially for its most drug-resistant forms. In 2017, through a partnership with Kazakhstan's National TB program, PIH started to run the endTB clinical trial in Almaty and Astana as part of the endTB project. The trial, which is funded by Unitaid, has been jointly coordinated by members of the endTB consortium: PIH, Médecins Sans Frontières (MSF), Interactive Research and Development (IRD) and their research partners, Harvard Medical School, Epicentre, and the Institute of Tropical Medicine of Antwerp (ITM). It aims to find safer and shorter treatment regimens for MDR-TB, using the medications bedaquiline and delamanid—the first new TB drugs developed in almost 50 years.
Since the start of the endTB project in 2015, hundreds of patients have been enrolled in and benefited from the observational study, where MDR-TB patients from 17 countries have received treatment with the new TB drugs and from the endTB and endTB-Q clinical trials. The overall goal of the endTB project is to reduce morbidity and mortality in MDR-TB through the development of MDR-TB treatment regimens that are shorter, more effective, less toxic, and less expensive. EndTB researchers hope that results from the clinical trials, specifically, can be used to advocate for revised international protocols for MDR-TB treatment and improve access to the new drugs.
The endTB clinical trial tests five regimens to show that bedaquiline and delamanid, in combination with other drugs, can offer patients a shorter course of treatment with fewer side effects. In contrast to the standard regimen of 18-20 months of treatment, which includes pills and daily injections, most trial participants receive nine months of daily oral medication. Since 2017, a total of 754 patients across seven countries—including Kazakhstan, Lesotho and Peru—enrolled in the trial.
Maya was among 184 patients who joined the endTB clinical trial in Kazakhstan. In Astana, the PIH team works with local clinicians and is embedded at the City Center of Phthisiopulmonology. After three months at the hospital, Maya transitioned to outpatient treatment, diligently continuing her medication regimen through video-controlled calls and in-person appointments.
But even though Maya’s physical condition continued to improve, feelings of loneliness and doubt about future prospects continued to weigh on her. She was finishing her college degree as a land surveyor online, while her mother and sister worked all day.
“Emotionally, I felt very discouraged,” she said. “I thought, ‘Nobody can understand what I am going through.’ I felt like I was the only one sick in this entire world.”
She opened up about her struggles to Gulrmira Tanatarova, a PIH social worker and outpatient coordinator, whom she met at the hospital. She felt she could confide in Tanatarova, who checked in on her weekly with phone calls. “I can share what’s on my mind and she will immediately support and console me,” Maya said. “Whatever the problem, I know that she can guide me.”
Tanatarova, who currently works with 16 endTB trial participants, tried to boost Maya’s morale. “I explained to her that she’s young and the disease is temporary,” she said. “I tried not to leave her alone.” She felt that Maya could benefit from more professional psychological help, so she connected her with a psychologist at Sanat Alemi Kazakhstan, a non-profit organization that offers social, legal, and mental health services to TB patients.
The sessions catalyzed Maya’s emotional and psychological healing. Within a few sessions, Tanatarova noticed Maya blossoming into a more vibrant and outgoing person. “I started to understand that I could control my own thoughts about how I approach my diagnosis and that I could overcome my fears,” Maya said. Inspired by the care she received from through Sanat Alemi, she applied for a job there working with TB patients to get fully integrated into all aspects of life. “I started feeling like there is a place for me in this world,” Maya said.
She now accompanies patients to plays and museums and coordinates support groups and various social services. The peer-to-peer approach between workers and patients is particularly effective in building relationships of trust, Maya says. “We know exactly what the patients are going through, because we’ve lived through the same moments,” she said.
Reflecting on her journey toward recovery, Maya can point to a shift in her perspective—when she began to see her diagnosis not as a burden, but as an opportunity for growth. A feisty teenager in the past, Maya says she became more gentle toward her friends and family.
“I began to value and enjoy small things in life, like my family and just being healthy,” she said.
The process of learning about TB and how it invades the body inspired Maya to have a new career vision; she switched her studies to nursing and has the dream of becoming a doctor.
“I began not only to accept, but to love my diagnosis,” Maya said. “Because it gave me an opportunity to change.”
*Patient’s name has been changed
Originally published on Partners In Health website