Patient Shares His Journey Toward Tuberculosis Recovery in Kazakhstan

Global clinical trial delivers safer, shorter treatment against deadly disease

 

Posted on Mar 24, 2022

doctor administers ECG to TB patient in Kazakhstan
Dr. Lyazzat Zhanabayeva, an endTB site investigator, performs an electrocardiogram on a tuberculosis patient to monitor side effects of his treatment regimen. Photo courtesy of PIH Kazakhstan

A year ago, Marat* was confronted with a slew of alarming symptoms: constant fatigue, occasional spikes of fever, coughing up blood, and dramatic weight loss. In just one month, he lost 26 pounds. Despite these signs, Marat continued to work as a stone mason at a construction site in Nur-Sultan, Kazakhstan, hoping he would feel better. On weekends, he often had a drink with friends. But the symptoms only exacerbated. Following a visit with a doctor and an X-ray, he received a shocking diagnosis—he had multidrug-resistant tuberculosis (MDR-TB), among the most deadly strains of the disease, and would need to be hospitalized for six months.

“This diagnosis was psychologically traumatic,” said Marat, a 34-year-old father of four, who chose to use a pseudonym in sharing about his journey toward recovery from TB. “I had a really hard time accepting it.” As the primary breadwinner for his family, leaving his wife and children without his support seemed unfathomable. One of his children has special needs and his wife was expecting their fourth child. “I began to think about them, what will they do without me?”

But after a serious conversation with the doctor, Marat made the decision to commit to the necessary treatment, beginning with a months-long hospitalization. The day after receiving his diagnosis, he was admitted to the City Center of Phthisiopulmonology in Nur-Sultan. 

“Everything has changed from that moment,” he said.

A Global Clinical Trial

Marat is one of 754 patients across seven countries who joined a clinical trial as part of the Expand New Drug Markets for TB (endTB) project, an international partnership launched in 2015 among Partners In Health, Médecins Sans Frontières (MSF), Interactive Research and Development (IRD), and financial partner Unitaid to find safer and shorter treatment regimens for MDR-TB, using the first new TB drugs developed in more than 40 years–bedaquiline and delamanid. 

Most clinical trial participants receive nine months of daily oral medication, in contrast to the typical regimen of 18 to 20 months of treatment–including pills and many months of daily injections. 

By October 2021, 184 patients had enrolled in the endTB clinical trial in Kazakhstan, which has some of the world’s highest rates of MDR-TB. To respond to this deadly epidemic, PIH has partnered with the local and national government since 2010. 

All Around Care for TB

For the first two months, Marat diligently followed his daily medication regimen at the hospital. His treatment included: bedaquiline, linezolid, clofazimine, cycloserine, moxifloxacin, and pyrazinamide. He experienced side effects, which manifested in weakness, dizziness, and heartburn, but doctors helped mitigate them.

PIH Kazakhstan and several charity organizations came together to create a network of support for Marat’s family when he was undergoing treatment at the hospital. Thanks to Sanat Alemi Kazakhstan, Marat’s 6-year-old son got a spot at kindergarten. Other organizations like Nur Alem Kazakhstan and Red Crescent of Kazakhstan, as well as volunteers from The Club of Kind Souls, regularly provided humanitarian aid through food deliveries, cleaning and school supplies, and clothing and baby items. PIH supported the family through food vouchers to a local supermarket. “The family has been really cared for,” said Gulmira Tanatarova, a member of PIH Kazakhstan endTB staff and Marat’s ambulatory coordinator.

Tanatarova has been a pillar of steady support to Marat and his family since the day he embarked on the treatment as part of the clinical trial until now, back home from the hospital, where he continues his regimen.

She calls her patient or his wife every other day, ensuring they’re getting nutritious meals, that Marat is taking his medications, and that he has warm clothing, particularly since his return to his job at the outdoor construction site. Occasionally, she visits Marat’s family to ensure that the living conditions are conducive to his full recovery. 

“The support and the role of a social worker is huge in the treatment process,” said Tanatarova. “Every patient needs an individual approach— you need to deeply understand their particular challenges.”

Most of the patients belong to socio-economically vulnerable groups and need emotional and psychological help. “During every encounter, I try to buoy them up and help them remain optimistic,” Tanatarova said. 

“I Consider Myself Lucky”

Currently, Marat shows up for his video treatment support every day. Shortly after breakfast, he connects with the nurse through a video call to ensure consistency in taking his medication. “He’s very diligent about not missing a day of his daily therapy,” said Tanatarova. 

Through Sanat Alemi Kazakhstan, Marat participates in a support group twice a month, where TB patients can ask clinicians and other experts questions and support each other. “On the days that I work, I ask to leave early to attend these meetings,” Marat said. 

At work, Marat doesn’t speak publicly about his diagnosis, even though his infection is no longer active. This airborne, infectious disease remains severely stigmatized in Kazakhstan and other post-Soviet countries given increased risk of infection among the marginalized groups of society. 

Looking back on his experience, Marat hopes that patients don’t delay turning to professionals once they experience symptoms. “I first had to believe myself that I could fully recover. The cure is within reach, if you commit to taking medication consistently and refuse alcohol,” Marat said. “It’s a hard and lengthy path, but it’s possible.

“I feel so much better than last year,” said Marat. “I consider myself lucky to have been part of this trial.”

*Name has been changed to protect patient privacy

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