Red Crescent Society of Kyrgyzstan volunteer rides door-to-door to help TB patients recover and to stop a deadly disease
Riding her bright red bicycle along tree-lined road on the outskirts of Kara Balta, Elena Sorokina is on a mission. She pulls off the road and parks her bike, puts on her N-95 mask and knocks on the door of 59 -year-old Sardarbek Chutoev.
“Is everything ok?” she asks, as he opens the door.
“Good!” he responds with a smile.
A health visitor for the Cure TB Project, Sorokina’s mission is to visit people who are going through treatment for Tuberculosis, or TB, an infectious disease that is curable as long as people complete a long and sometimes difficult course of medication.
“Do you feel better today?” she asks.
“Better!” he says.
Caused by a bacteria that usually impacts the lungs, TB can be a lonely, painful affair and Chuteov is the first to say that Sorokina’s visits have made a big difference to his recovery. “I suffered so much,” he says. “Then I discovered Elena and the support group.”
A helping hand is not only critical through the tough times, as the medication often has side effects. It’s also critical when patients start to feel better, when recovering patients sometimes think it’s ok to stop taking their medication.
Dropping treatment can lead to worse outcomes, not only for the patient, but for others. If not eliminated, the bacteria that survive are more resistant to medication, leading to relapse and, potentially, the spread of a more resistant TB strain.
“The most important thing in my work is that every patient who started treatment does not quit,” she says. “In order to be cured, they need to go through the entire course of treatment.”
Elena Sorokina usually uses her bike to visit patients who are undergoing TB treatment. Her hope is that all patients finish their treatments and recover.
This is why the Cure TB Project focuses particularly on patients who, for various reasons, need help adhering to treatment. “The most important point in working with patients is to convince them that tuberculosis is a curable disease,” she says. “Someone might not believe in their diagnosis, that is, they don’t accept it.”
In addition, diagnosis is not always simple. People often think the first symptoms must be something else. Chutoev’s case, for example, was complicated by an initial misdiagnosis. “When the Covid-19 pandemic started, I got sick,” says Chutoev. “They said it was Covid-19. Then, some time after, I got checked again. They said my lungs were in very bad condition. Then they gave me diagnosis of TB.”
Once people understand and accept the diagnosis, they need to quickly begin their treatment. “It’s better to treat it when it just starts, than have your health damaged,” says Sorokina, adding that this is why the work of the Cure TB Project is so important.
People also need support handling the reactions of others, such as neighbours, friends and family. It must be explained to them, Sorokina says, that if a person is being treated for tuberculosis, they are no longer infectious.
Still, people with TB are often ostracized and stigmatized. “Sometimes they feel depressed,” she says of the patients. “There is rejection. So, they don’t want to communicate with others. It seems to them that everyone knows about their illness, that everyone has turned away from them.”
This can lead to a downward spiral if patients lose hope and stop taking care of themselves. Chutoev says Sorokina’s support helped him get through. “She asked me about my health and I said, ‘I don’t want to live anymore’. She replied, ‘What are you talking about? You’re going to get well, it’s curable. Don’t think negative thoughts.’
“There’s a saying in Kyrgyz, ‘Being asked about your health is as good as being cured’,” says Chutoev with a laugh. “One thing I’m grateful for Elena is that she checked on me once every day.”
Sardarbek Chutoev, one of Elena’s patients, describes how her support has changed his life. She visited him once every day while on treatment.
“It’s persistence and consistency that counts,” Sorokina says. “There will be a lot of ups and downs. Very often, treatment is abandoned due to side effects. When side effects are not detected on time and are not eliminated, a person becomes ill and they can simply quit treatment. And a person who is not being treated, not only are they sick, they also infect others – This is the problem.”
After making several visits, and pedalling around much of the town, she gets back on her bike and heads back to the central clinic, where she checks in with the clinic staff about how a particular patient is doing.
“She has successfully completed her treatment,” says her colleague, a big smile evident even if hidden by an N-95 mask.
“Great news!” Elena responds, clapping her hands.
“The best part is when the patient finishes the treatment and recovers,” she says. “That feels very nice. Most of our patients are recovering and we are happy when they finish treatment with recovery.”
“When I come to the TB office, I half-jokingly always express my wish. I say, “Girls, I have such a big dream that somehow I would come for my patients and you would tell me, ‘But we have no one, no one to give you, there are no TB patients.’ ”
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