Fieldset
“I want to tell my story because I am alive”: Finding love and other cures in Ukraine

Communications manager Nitin meets two patients with an extraordinary love story, who explain how a patient-centred approach is helping people like them successfully complete treatment for drug-resistant tuberculosis

sergey and natasha, tb survivors

Little did Sergey realise that a trip to the refrigerator would herald a memorable day.

On that early August morning in Ukraine last year, a groggy 40-year-old Sergey met Natasha. Unbeknownst to him at the time, he had just met his future wife. Finding love was unexpected, and came in the least likely of all places: a tuberculosis (TB) dispensary.

The first diagnosis

Back in 2001, Sergey suffered from pneumonia and sepsis in his lungs. “I was diagnosed with TB," he explained. "What made it more difficult was that I was also addicted to drugs. Things were tough. I was in and out of prison, my wife had died from TB and alcohol addiction, and I had lost custody of my son.”

Years later, in 2020, a chance encounter with MSF’s social worker Vitaliy convinced Sergey to enter the treatment programme for patients with multi-drug resistant tuberculosis (MDR-TB). The programme is a collaboration between Médecins Sans Frontières / Doctors Without Borders (MSF) and the Regional TB Dispensary in Zhytomyr, around 140 kilometres from Ukraine's capital, Kyiv.

Unseen costs

Despite an overhaul in TB health policy, until a few years ago patients in Ukraine had to spend 12 to 24 months living in dedicated TB health facilities.

A prolonged hospital stay comes at a cost: separation from family and community support, often combined with loss of employment and income. TB survivors like Sergey, former prisoners with a history of substance-use, occupy the lowest ranks of socio-economic hierarchies in Ukraine and are often not able to start and/or complete hospital-centred TB treatments.

Hard to withstand

On top of the financial and emotional challenges of such long-term hospital stays, the current treatment for drug-resistant forms of the disease is also difficult for patients to withstand.

It can require daily injections and combinations of drugs with side-effects ranging from the moderate to the severe, from fatigue, to, in some cases, neurological problems.

“The drugs impacted my hearing and eyesight; I lost my appetite and consequently a lot of weight," says Sergey. "I used to wake up at five or six in the morning due to stomach cramps and I would cry at the sight of those pills. It was really difficult.”

As he shares his story with me, Sergey's partner Natasha leans into his chest, and tightens her hand around his. She has a similar tale.

“I had a history of substance addiction, and my then partner was an alcoholic. In 2007, I tested positive for HIV and lost parental rights to my two children. Later that year, I contracted pneumonia, which doctors initially diagnosed as an infection, but later identified as TB. I managed to get treatment but contracted TB again in 2009, and later MDR-TB twice in 2016 and 2020,” says Natasha.

Serious risks

Incomplete TB treatment poses a serious risk, as it is linked to the emergence of drug-resistant forms of the disease. A World Health Organization report found that in 2018, 29 per cent of patients in Ukraine with new diagnoses had a drug resistant form of TB, while among people who had previously received treatment the figure rose to 46 per cent. This rate is high in comparison to other countries in Europe and is a significant public health challenge here.

A new approach

The Regional TB Dispensary is aiming to reverse this trend through an operational research programme supported by MSF. The study advocates for a patient-centred model by showcasing the numerous advantages of shorter treatment plans using newer drug regimens.

The treatments now last between nine and 12 months, and use highly effective medications including bedaquiline and delamanid, which cause fewer severe side-effects than the older drugs. They can also be taken as tablets, eliminating the need for painful injections.

Alongside their TB treatment, many patients in this programme also receive treatment for co-morbidities like hepatitis C, HIV and alcohol or substance-use disorders.

Love and medicine

A patient-centred health approach also prioritises the individual needs of the patients.

“When I entered the MSF programme in Zhytomyr, I was struggling. I was craving drugs all the time but I also wanted to get my life back – get a job, apply for disability status so my medical expenses could be covered. As part of my treatment here, I also started a methadone substitution therapy. But when I met Natasha, that’s when I felt God freed me,” says a beaming Sergey.

The support team

Another aspect of the new approach at the dispensary is strengthening out-patient care, so patients can stay with their families and communities while receiving treatment. Being able to return home and continue the medication increases the chance of patients completing their treatment.

MSF’s patient support teams are made up of nurses, social workers and psychologists. They work with DR-TB patients to understand and resolve potential barriers to continuing treatment, which can range from everything from unpaid pensions to lack of gas or heating in homes.

“I want to tell my story because I am alive. TB patients are lost to society. People around us don’t understand. We are told we won’t find a job. I want to tell health authorities to ensure nutritious food, healthcare workers to treat us well, social workers to listen to the needs of patients,” says Natasha.

A new start

Discharged from the Regional TB Dispensary in October 2020, Sergey and Natasha got married that December. They completed their treatment in January 2021. Today, they dream of building a house with a small garden and buying a car to travel the world.

As our conversation draws to a close, Sergey tells me, “In 2007, I was diagnosed with TB and HIV and I thought I was going to die. Then I saw a poster of a child under a sunflower which said 'Life goes on'. That gave me hope. Today, I am alive”.

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Read more: Stories from tuberculosis survivors

TB & Me: "Today I am alive, and I value my life"

TB & Me: "Surviving TB, MDR-TB and the negligent system"