Tuberculosis, a disease with history
In the 1990s, following the collapse of the Soviet Union, Ukraine experienced serious medication delivery delays. For patients with tuberculosis (TB), the lack of medications resulted in incomplete drug regimens and poor treatment practices. Although the drug supply problem resolved over time, a new challenge arose: Ukraine became one of the top six countries in the world with the highest burden of multidrug-resistant tuberculosis (MDR-TB). With a total population of 42 million people, the country currently has 12,000 patients sick with MDR-TB, a figure that is growing.
Every year, approximately 8,500 new cases of MDR-TB are detected in Ukraine, and over 1,500 patients are ill with extensively drug-resistant TB (XDR-TB), a version of TB that is more lethal and much harder to cure.
The statistics show improvement in the overall TB situation: the total number of TB patients is decreasing and TB mortality is dropping—and yet the proportion of TB patients with MDR-TB is increasing.
A regimen that can stretch for years
Ivan Kostrykin, 35, an engineer in the energy sector, never thought he would become a patient in a TB hospital. However, in 2010, during a routine checkup, doctors diagnosed him with MDR-TB. It would take six long years for him to recover.
“During those six years [when] I was sick, when I thought it would never end, I became a real TB expert. I could speak to the doctors in their language, and I learned the terms related to the disease,” says Ivan.
“Our society tends to stigmatize TB patients in addition to the big problems they already face. That’s why patients prefer to keep their disease a secret,” says PATH’s Ukraine Country Director Kateryna Gamazina. “People do not reveal their status to their colleagues, friends, or relatives. Sometimes they are afraid to lose their jobs or they simply want to prevent judgment from people close to them.”
The future is patient-oriented
PATH has been working to combat TB in Ukraine since 2001. In 2014, PATH received funding from the United States Agency for International Development (USAID) to implement the Challenge TB project in collaboration with KNCV (the Royal Dutch TB Association). The five-year project aims to decrease the burden of MDR-TB by improving all aspects of TB management, including diagnostics, treatment, and control.
Using tailored strategies so individuals complete their regimen, PATH launched a patient-oriented approach in two pilot regions of Ukraine: Poltava and Mykolaiv. Now, after just 2 years, the team’s efforts are showing success.
Completing the MDR-TB treatment regimen is especially challenging among high-risk groups: HIV-positive people, the homeless, those suffering from alcohol and drug addiction, those leaving prison, or the unemployed. The drugs must be taken every day and can cause severe side effects such as pain, fever, or allergic reactions. And many MDR-TB patients interrupt their treatment when they start feeling better or if they experience financial and social pressures.
“Interruption in TB treatment is a serious problem in Ukraine that threatens to cause new resistant cases,” explains Kateryna Gamazina. “That’s why we developed very clear inpatient and outpatient care models, strategies for providing social and psychological support to MDR-TB patients who are on long-term treatment, and a road map for successful implementation at the national level.”
Long-term care outside the hospital
PATH in Ukraine is moving away from the common practice of hospitalizing MDR-TB patients for the duration of their very long treatment. The approach, left over from Soviet times, was inefficient and unnecessary to control infection, while being extremely hard on patients, their relationships, and well-being.
When Ivan left the hospital and began outpatient care, the treatment protocol at that time required patients to take TB drugs every day under the direct observation of a medical worker. However, Ivan was assigned to a distant medical facility, even though there was another one closer to his home.
“Every day I had to walk 5 km and the same distance back, as there was no public transportation,” says Ivan.
Through the pilot patient-oriented project in Mykolaiv, social workers arranged for Ivan to receive his TB drugs in a medical facility closer to his home and to encourage him to stick with his regimen by meeting several times each week.
“It’s hard to be determined and bring yourself to take TB drugs every day,” says Ivan, “especially if you know that you will feel bad afterwards. [Many times] I intended to give up my treatment, but social workers convinced me to keep going.”
Improving treatment across Ukraine
At the request of the Ukrainian Center for Public Health, PATH developed a system to determine the most appropriate treatment for every MDR-TB patient, based on individual health conditions and needs. PATH will use the experience gained in the pilot regions to help implement this patient-oriented approach at a national level.
“Every region where we work has its own specifics. For example, Odessa and Mykolaiv regions historically have the highest level of HIV,” says Kateryna. “So, we focus our efforts on improving case management of patients with both HIV and TB.”
Each month, PATH sends experts and staff to visit TB hospitals, provide training to TB specialists, conduct supervisory visits, address gaps in diagnostics and treatment of MDR-TB, and even provide help at the workplace.
“An outside perspective is always important: you can see [where] other TB doctors made mistakes, and provide advice to solve a problem. We are trying to propose solutions based on the needs of a specific region or for the specific TB institutions where we work,” says Olga Pavlova, PATH Ukraine senior program officer and a former TB doctor and National TB manager.
PATH specialists talk to medical workers and doctors to look at the sequence of services to help improve management of MDR-TB cases. Poor infection control remains one of the biggest concerns in successful treatment of these patients, many of whom have unique and hard-to-treat cases.
PATH also helps facilities procure equipment (such as personal respiratory protection and ultraviolet [UV] lamps) and develop infection control plans that include discharging patients from the hospital to outpatient care in a timely manner. Hospitals can lower the risk of spreading TB infection by up to 80 percent by implementing these measures.
A promising new drug for the critically ill
In early 2017, XDR-TB patients in Ukraine received good news. Through a USAID drug donation program, PATH is delivering a powerful new anti-TB drug called bedaquiline, proven to be effective against XDR-TB.
“This is a real hope for 1,500 Ukrainian patients with extensively drug-resistant TB,” says Oksana Syvak, deputy minister of health of Ukraine on European Integration.
Bedaquiline is vitally important in the effort to prevent an epidemic of incurable forms of TB. The drug is not registered in Ukraine, but through USAID’s donation program, it is free to countries with significant burdens of MDR-TB. PATH specialists, together with Ukrainian partners, have already developed treatment protocols using international World Health Organization recommendations.
Critically ill patients with XDR-TB need 20-month treatments, but because the new drug accumulates in the body, bedaquiline is used only during the first six months. The therapeutic effect is long-lasting.
“According to our plan, bedaquiline will be shipped to Ukraine in April this year,” says Kateryna. “We have almost finalized this process.” Once the drug arrives, 200 patients will be treated in the hospital of the Institute of TB and Lung Diseases. Later, they can continue treatment where they live. PATH in Ukraine will keep working to include bedaquiline in the national program to ensure delivery of the drug to XDR-TB patients who need it most.
Ivan’s clean bill of health
In May, Ivan finally recovered from his long bout of TB. He says that he is ready to open a new page in his life and leave all that struggling behind.
“I can’t thank my doctors and the Challenge TB project enough. They helped me get on my feet and get back to normal life with my family.” Now, with his healthy lifestyle, he wants to set an example and be a role model for others.
“For people who are desperate and hopeless now, just like me before, they should know that this program can provide new hope to live.”