Iryna is a doctor, and she knows about tuberculosis.
She knows how it is transmitted
She knows the symptoms
She knows how to treat it
The one thing she can’t tell you is exactly how she got it.
Despite what many people may think, tuberculosis (TB) is not a disease of a different era, it is a disease of the here and now. A disease which kills with impunity, and spares no one.
When she first got sick, she was working in a hospital doing her medical training. She recalls her first symptom wasn’t the usual coughing associated with the disease, it felt more like flu. She had a painful throat and a slight fever, but she felt unbelievably weak, and bit by bit she began to waste away. Soon she was too weak to do simple housework, and despite being a doctor, she didn’t think she could get TB, for her it was a disease of the poor and the vulnerable.
When she was tested the news was bad, it wasn’t pneumonia, it was TB and not the normal sort of TB, this sort was resistant to the drugs which are normally used to treat the disease. In Ukraine, an estimated 37,000 people get TB each year, a third of which are drug-resistant forms of the disease. Of those that get drug-resistant TB, only around half will be successfully cured.
She was put on treatment, a tough course of medication, involving daily injections and nearly 24-months on a cocktail of toxic drugs. Iryna stuck to the daily medication, taking them without interruption. As a doctor, she knew it was her only chance of survival.
“Some of the drugs had serious side effects — I had terrible pain in my feet as if I was stepping on knives. But I never thought of giving up. I knew I had to continue treatment whatever happened.”
Iryna says while she was undergoing treatment at local TB hospital, she saw other patients with drug-resistant TB who didn’t take all of the prescribed drugs because of the terrible side effects.
“I thought it’s over. Even the doctors didn’t know what to do. But all my thoughts were about my small boy. So I kept fighting. I knew I had only one chance of survival and it was treatment with the new drug bedaquiline.”
Fate was on her side. The USAID-funded Challenge TB, implemented by PATH in Ukraine, was working hard with the Ministry of Health and the National TB Institute, to bring this new drug to the country.
“During the introduction of bedaquiline, the most complicated task was to change the approaches and practices of TB doctors,” says Olga Pavlova, Challenge TB Senior Program Officer, “Our goal was to apply standardized practices and to make sure that the TB bacteria did not develop resistance to bedaquiline as well.”
The hard work paid off, and Iryna was lucky to become one of the first patients enrolled on the Challenge TB pilot program in 2017.
“Can you believe it, I didn’t see my son for over a year while I was being treated, but I called him every day and promised I would come back. My husband and family were so supportive, I couldn’t have made it without them. Fortunately, throughout my treatment, they never turned their backs on me.”
Despite all the odds, it all turned out well for Iryna. She has just become the first patient in Ukraine to be cured of extensively drug-resistant TB. The treatment took years of her life, but she is now back with her family. She is an optimistic person, and she says that despite the horrors she faced, the dark moments when she thought her life was over, the experience changed her for the better.
“Before I got TB I worried about things that didn’t really matter. I worried what people what people would say and think about me. And now, after what happened, I realize that I went through real trauma and I was so close to death. I have developed a thick skin, and now I only pay attention to the things that really matter.”
There are currently 149 patients enrolled in the Challenge TB bedaquiline pilot program. Doctors say that for almost all the treatment is going well, which is great news both for them and also the more than a thousand other Ukrainians with extensively-drug resistant TB.
“Our pilot program paved the way to save the lives of extensively drug-resistant TB patients,” says Olga Pavlova, “This year bedaquiline was procured by the health system in Ukraine, so we expect that each and every patient with extensively drug-resistant TB will now be able to get bedaquiline, and with it, a chance to be cured.”
Iryna now knows TB is not just a disease that affects other people, but she doesn’t dwell, she looks to the future, and buries her difficult past where it should be, out of sight, but never quite out of mind.
Footnote: Because of the stigma surrounding TB, Iryna did not want to appear in the photos. She is afraid that if people get to know about her disease it will ruin her career and her 4-year-old son will be bullied.
Story: Tristan Bayly & Lena Laba
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. PATH is the lead partner of the consortium implementing the project and works on the project’s activities in Ukraine.