Curing the Untreatable
Marion Biremon & Tristan Bayly
When Umutai got sick with multi-drug resistant tuberculosis (MDR-TB) she was forced to go back to her home country of Kyrgyzstan and put her dreams on hold. She had only recently moved to Russia after leaving her job as a hairdresser in the southern region of Jalal-Abad, Kyrgyzstan. In Russia, she had been working on a construction site, the job was better-paid but difficult, but she had a hope of building a future for her family.
21-year-old Umutai had to let this go when she got sick. In Kyrgyzstan, she was diagnosed with MDR-TB and was hospitalized in the capital Bishkek because she was contagious. She only had one thought in mind: to get cured as soon as possible and go back to her plans.
After a year in the hospital, Umutai was finally released to continue her treatment at home, but her happiness didn’t last long. After just one week, her health was getting worse, and she was forced to return to the hospital. It turned out that Umutai had developed extensively-drug resistant TB (XDR-TB), and the treatment she had endured for more than a year had failed.
Kyrgyzstan has some of the highest numbers of people with drug-resistant TB in the world. Drug-resistant TB is notoriously difficult to treat, and on standard treatment, only around 50 percent of people with MDR-TB and 10 percent of those with XDR-TB are cured.
To address this problem, USAID’s Challenge TB project has worked with the Ministry of Health in Kyrgyzstan to introduce individualized treatments and new TB drugs. Individualized treatment is adapted to every patient according to their specific need, which means that patients only take drugs which are effective. The treatment can also be reinforced with the two new drugs Bedaquiline and Delamanid, giving a new chance to patients whose TB is resistant to other commonly used drugs.
When Kyrgyzstan began to pilot the individualized regimen with Bedaquiline in January 2017, Umutai was critically ill. However, she was lucky to be one of the first patients enrolled on the new drugs. Her state of health was so bad that she had little hope, but she was surprised to see how effective the new treatment was. With each passing week, she felt better, and she started to regain the weight that the disease had stripped away from her.
“When I started treatment, I weighed only 40kg. The treatment very difficult, I had headaches, fever, cough. I had lost all hope of living, I was convinced that I would never get better,” recalls Umutai. “But it turned out that I was wrong and that even drug-resistant TB can be cured. When I was put on the new treatment, I immediately felt a difference, I was getting better. The first sign was that my cough finally stopped and I made steady progress with each passing day. I am so grateful to all of the medical staff who supported me and saved me.”
Now Umutai weighs 60kg and is full of life. In June 2018, she finally finished treatment and she was cured, healthy, and could enjoy her life once more. She is the first patient in Kyrgyzstan to be cured using an individualized treatment.
“All I wanted was to be cured, but I wasn’t expecting to finish treatment so early,” says Umutai, who is now back home with her mother and grandmother and making plans for the future. She wants to go back to work as early as next month and to start rebuilding her life post TB, she’s also considering going to university.
Umutai’s joy when she learned she was cured was indescribable says Chynara Shukurali Kyzy, her case manager from the Challenge TB project: “She just couldn’t believe it. She was in floods of tears and had to ask me three times to repeat the news so that she could really be sure what she had heard. Then she smiled and immediately called her mom to tell her the good news.”
“I am incredibly happy for Umutai. At the beginning of the project, our greatest hope and expectation was that every single patient in Kyrgyzstan would have access to an effective treatment and to the new TB drugs,” says Bakyt Myrzaliev, director of the Challenge TB project in Kyrgyzstan.
“Now that Umutai has completed treatment it is clear that everything we did mattered. These new treatments are really increasing the chances of successful treatment. In the past, patients like Umutai had very little chance of survival, but now they can be cured.”
Without this treatment, Umutai would have been left with no other options.
“I feel an immense joy that now we can cure patients which we couldn’t save before. I remember the eyes of every one of my patient who died of drug-resistant TB and I’m so happy that this time is behind us, that now we can save even more people and return them to their families,” says Elena Zhdanova, head of the DR-TB consiliium board of the National TB Program. “I saw patients die and it was horrible because we did everything we could and yet we couldn’t save them. I was so happy to see Umutai when we told her that she was cured. I will never forget this moment, and it is moments like this that make our job so special.”
All the patients who started this new treatment during the first months of 2017 are due to complete it at any moment, and it looks as though they will also be cured.
By June 2018, more than 350 patients were benefiting from new individualized treatments in Kyrgyzstan, with two-thirds of them on new drugs. The treatment and drugs are now available across the whole country and are expected to save hundreds of lives.
Many thanks to Chynara Shukurali Kyzy and Azizbek Bazarov for their help with this story.
For more information on Challenge TB visit www.challengetb.org
Challenge TB is a USAID-funded project that aims to prevent the transmission and disease progression of TB, improve patients’ access to TB care services, and strengthen TB platforms. KNCV Tuberculosis Foundation is the lead partner of the consortium implementing the project and works on the project’s activities in Kyrgyzstan.