“Sorry, I’ve had a busy day, you know everyone wants everything on a Friday.” D settles herself in for an interview after finishing her part-time job, which she does while also running her own marketing company with her brother.
A busy young professional, she looks like she has to make an effort to think back to find an answer to my next question, “Have you found it hard to keep working, during your treatment for tuberculosis?”
D sighs and says, “I’m sad, I lost so much time when I was ill. I started my bachelor’s degree in 2010 and I couldn’t finish it until 2020. Now I just want to get on and make up for all the opportunities I lost in that time. I would like to travel, earn money, finish my master’s degree, and have time for relationships.”
It has been 5 years now since D fully recovered from a multidrug-resistant (MDR) form of TB which she had recovered from once already as a young teenager. A new treatment finally gave her a chance to return to normal life but, before that, for over 4 years, she followed several treatment regimens which didn’t work.
Even the walls can cure you
During those 4 years, D’s treatment programmes included daily injections which sometimes lasted for months on end, necessitating either long hospital stays or gruelling trips to outpatient clinics.
“At the hospital, the patients in the next department looked like the walking dead,” she remembers. “Many were so depressed, and the side effects of the treatment were awful. It was difficult for a 19-year-old girl to see. Then, after being in hospital, I still had to continue treatment every day on a regimen including injections. I remember the one-and-a-half-hour journey to and from the hospital, feeling sick, no car, and I just wanted to lie down.”
D therefore jumped when she was offered the chance to take new drugs from the comfort of her own home. “Some really good patients lost their chance to be at home, to be in a pleasant, cosy environment, to eat food they liked and watch what they liked on TV,” she muses. “I hated being in hospital; the new treatment is so much better. When you’re at home, you’re at home. It’s your castle and they say even the walls can cure you.”
New, fully oral treatment
In D’s case, despite her careful adherence to medical advice, the treatment for MDR-TB, which was available at the time she was first diagnosed, was not as effective as it is now. Her doctor then suggested she try a new fully oral treatment, which was just starting to be offered in Kazakhstan. D received new TB medicines that are now recommended by WHO for treatment of MDR-TB.
Dr Malik Adenov, Manager of the National TB Programme of Kazakhstan, explains, “We hadn’t had any new TB drugs for 40 years until 2012 when new medications became available for compassionate use and later have been recommended by WHO for every MDR-TB patient. D was one of the first to receive the treatment as she was a very severe case. Her mother had died from TB and all her family were affected. Years of treatment hadn’t worked, and she was desperate.”
More time to communicate
D started taking oral tablets in front of her doctor online. She no longer had to receive daily injections and wait for them in person, and she also had more time to discuss any issues with her doctor.
“We are not only observing our patients online, we are also supporting them, which increases trust,” explains Dr Adenov. “You just take your pill, say the name of the pill, hold it up in front of the camera, and take it with your doctor watching. It’s less stressful and that’s a huge benefit both for patients and the national health system.”
Another benefit to the new video-supported treatment is the discreet way it can be followed. Dr Adenov explains that there is a lot of stigma around TB, which is often considered to be a disease affecting poor people living in poor conditions.
“With this treatment, there are no mandatory daily visits to the clinic for the drugs, so there is less cost to the patient and less discrimination,” he says, adding “there is also more time for communication, to identify and address patient concerns and any problems that can affect adherence to treatment.”
D stuck to the new treatment plan and within a few months, it worked. “Right now, in my mind, I’m like a 22-year-old because I still want to travel, I still want to party even though I’m almost 30,” she laughs. “Maybe I will get married but I also want to catch up and take all the chances I can get. I feel like a normal person but I’m still afraid to get ill again. I’m optimistic though, I look younger than I am and, after all this TB stuff, I am sure that I will live to be 100.”
NOTE: The subject’s name has been changed to maintain confidentiality.