Beating Drug-Resistant Tuberculosis: A Family’s Journey with the endTB Project in Kazakhstan

In early 2023, Saya* wasn’t concerned when she came down with a cold. She knew how to care for herself and waited patiently for her self-administered treatment to bring relief. When, despite her best efforts, she wasn’t getting any better, she visited the clinic in her district of Kazakhstan. In the second week of March, her lab tests revealed that she had tuberculosis (TB).  

TB is the world’s deadliest infectious disease, despite being completely treatable. When bacteria from the TB infection spreads, it steadily affects different organs in the body, usually starting with the lungs. Globally, around 30% of TB cases are never diagnosed or treated.

For patients who do receive a diagnosis, TB can be confusing at least, and often terrifying. But Saya wasn’t afraid.  

“I did not experience much fear or stress, since I knew first-hand about the disease,” said Saya. “My mother and brother had already had tuberculosis in the past. When I was admitted to the hospital, I was already mentally ready that I would be away from home and my family for a long time.”

Saya was directed to receive treatment through a Partners In Health (PIH)-supported program under the care of the same physician her brother and mother had been treated by, Dr. Amanzhan Abubakirov, PIH Kazakhstan endTB co-investigator. Despite her general fear of doctors, his familiarity helped improve her comfort and confidence.  

At the clinic, Dr. Abubakirov introduced Saya to the endTB project—a partnership between PIH, Médecins Sans Frontières, and Interactive Research and Development, funded by Unitaid—which utilizes clinical trials of new drugs and shorter treatment regimens to dramatically improve the treatment of multidrug-resistant tuberculosis (MDR-TB). Kazakhstan is one of 17 countries participating in the project, along with two other countries where PIH works: Peru and Lesotho.  

For Saya, participating in the endTB project is almost a family tradition.  

“My mother was treated in 2017 as part of the endTB observational study, and my brother in 2018 as part of the endTB clinical trial,” she shared. “They both were able to successfully overcome the disease.”

Saya, however, was going to participate in the endTB-Q clinical trial, a trial specifically for people with pre-extensively drug-resistant tuberculosis (pre-XDR-TB), a very hard-to-treat form of TB.

The endTB-Q clinical trial enrolled 323 patients across six countries, including India, Kazakhstan, Pakistan, Peru, Lesotho, and Vietnam. Of them, 21 were enrolled in Kazakhstan, including Saya.

To participate in endTB-Q, Saya was given instructions on her requirements: taking her medications on time and as instructed for nine months, coming for regular checkups, and reporting any side effects she experienced. She was also provided with food and transportation vouchers to help ease the burden of this extensive treatment regimen.  

“I am grateful to all employees who took part in the project and provided me with medical care and support,” she said. “I had various examinations and information support was always provided: if I had any questions, I always received a detailed and reasonable answer."

Fortunately, throughout Saya’s 9-month course of treatment, she did not experience any significant or severe side effects and is delighted to now be back in good health.  

Her advice for others who receive a TB diagnosis? Don’t “worry or be stressed, but trust professionals and accept help from people who are trying to help you. No matter how hard it is, don’t worry and then everything will be fine.”

*Patient gave permission to use first name only