“It doesn’t matter if they kill me, but it’s better to die healthy,” said 48-year-old Maksym, as he told his story about how he overcame hepatitis C virus (HCV) while living in an area of east Ukraine that’s been under regular Russian bombardment.
Keeping infectious diseases under control remains a priority for the millions of war-displaced people in Ukraine. But while the outcome of the war remains unknown, Maksym has, at least, fought and won his battle against HCV.
War and infectious diseases are two sides of the same tarnished coin. Spilled blood, poor hygiene, contaminated water, overcrowding, poverty, and destruction of healthcare infrastructure all contribute to a problem that is as old as war itself.
But the surge in HCV infections started decades ago.
A High Burden
Ukraine has one of the highest prevalence levels of HCV in the world, estimated at 3.1% in 2020; by comparison, approximately 1% of the US population has HCV. Infections in Ukraine are facilitated primarily by injection drug use, with between 0.8% and 1.2% of the adult population injecting drugs.
Even before the Russian invasion of Ukraine in February 2022, people with HCV who injected drugs tended to experience barriers to care, including limited screening and diagnostic testing. Access to direct-acting antiviral (DAA) therapy in highly specialized infectious disease hospitals was mostly inaccessible to this patient population too.
At that time, there were 230 HCV treatment centers treating 16,000-18,000 patients annually, with 3336 patients enrolling in the Alliance for Public Health (APH) program in 2020. APH is a nongovernmental professional organization that makes a significant impact on the epidemics of HIV/AIDS, tuberculosis, viral hepatitis, and other socially dangerous diseases in Ukraine.
Following the invasion, only 80 treatment centers remain, with around 12,000 patients being treated. Per the APH, enrollment with its program also has dropped to 2041 patients.
Lyudmyla, a social worker in Ukraine, told Medscape Medical News that the management of patients with hepatitis was thrown into total disarray for the first 6-8 weeks after the invasion.
“Some people on treatment fled, while many of the testing labs closed down,” she said.
At the same time, many new patients arrived from surrounding villages and cities.
“People were desperate,” Lyudmyla said. “Running away from the immediate danger of war and seeking safety was prioritized over their health.”
Lyudmyla and Maksym
But people did start to seek healthcare again. Maksym was one of these people. Having contracted HCV via injection drug use, Maksym received DAA therapy that reduced his symptoms, yet he still required more treatment. Only through the persistent efforts of Lyudmyla did he obtain access to the APH program.
Zhanna Tsenilova, MPH, coordinates the APH’s HCV micro-elimination program, which cares for people with HCV as well as those co-infected with HIV or tuberculosis.
APH, including Tsenilova, have shared data on its HCV treatment model during the country’s war emergency at conferences, including the recent International Conference on Health and Hepatitis Care in Substance Users.
APH started in 2015, and in those 8 years approximately 12,500 people from key populations in Ukraine have received assistance from the organization, which includes those helped since the start of the war. APH works in cooperation with state partners and civil society organizations across Ukraine and in some of the occupied Russian territories to perform healthcare-related services in the local communities. Fourteen community nongovernmental organizations, cooperating with field healthcare facilities in 16 regions of Ukraine, have provided an HCV cascade of care, including linkage with harm reduction, outreach routes, opioid substitution treatment sites, peer treatment monitoring, and re-infection prevention education.
But efforts to deliver healthcare are constantly overshadowed by a state of fear, with four major healthcare facilities remaining in occupied territories.
“We experience bombings daily, but we have set up two new treatment sites within 20 kilometers of the frontline, with other sites further out, including Pokrovsk, Selidovo, Dobropolie in Donetsk [region], Nikopol, and Novomoskovsk in Dnipropetrovsk [region],” Tsenilova said.
“Sadly, we’ve lost some people from the program,” she said. “For example, in Mariupol, 27 patients started treatment, but since the war, we have no idea where they are. It’s a similar picture elsewhere.”
Establishing Diagnostic Testing and Treatment in a War Zone
Challenges during that first year of the war were many, including some healthcare facilities and laboratories being destroyed, screening and diagnostic testing being suspended, lack of medications and threat of treatment interruptions, and no transportation to healthcare facilities through block posts. But services were readjusted to meet patients’ needs.
HCV diagnostic tests and treatment are delivered to the front line and occupied regions. The government of Ukraine has procured generic DAAs from suppliers in India under international rules of procurement. In addition, the APH procures its own DAAs for key co-infected populations under its program. Medicines are dispensed for the full course to avoid treatment interruptions.
Since the start of the war, the APH has provided approximately 25,000 HCV rapid diagnostic tests, 2500 HCV treatment courses, and 10,000 reagents for HCV diagnosis on GeneXpert. The latter were urgently purchased and delivered by the APH directly to field healthcare facilities.
“The main challenge for HCV control is the laboratory diagnostics, that is, the HCV RNA PCR test,” Tsenilova said. “These have never been covered by the state budget of Ukraine, so people pay for it out of pocket and get diagnostic confirmation in private labs.”
Tsenilova said the APH also procures diagnostic reagents for laboratories, either small private ones or those associated with the healthcare facilities.
“When the war started, many of the larger labs closed down, so we sought out those that remained intact and staffed,” she said. “This proved successful such that we could continue to provide diagnostic confirmation by PCR.”
Restoring Healthcare to Liberated Areas via Mobile Treatment Points
About 6 million people have been internally displaced within Ukraine, and they have needed help reconnecting to healthcare professionals.
Under occupation, and even in the liberated territories, healthcare services are extremely limited, particularly in rural areas, such that chronic diseases among those residents who remain — often people advanced in years — go unchecked and untreated for months, meaning conditions can worsen considerably.
APH’s peacetime remit of providing healthcare for infectious diseases rapidly extended to providing basic primary healthcare too, including care for cardiovascular disease and type 2 diabetes.
The APH repurposed its Mobile Treatment Points — special vans configured to serve as clinics — to provide medical and humanitarian services to people living in de-occupied territories. During the first months of the war, incentives were provided to secure the help of medical staff.
Each Mobile Treatment Point includes three vans. In one van, two family doctors provide primary care. The second van carries basic diagnostic equipment, including cardiographs, a glucometer, a tonometer, and rapid tests for viral hepatitis, HIV, and COVID-19. The third van carries humanitarian aid, including first-aid kits, food, warm clothes for adults and children, and health support kits for people with limited mobility or who are disabled.
“In addition to the destruction and damage to healthcare facilities, Russian land mines mean it is unsafe to walk outside of the paved roads in the villages, and there is lack of public transportation to access those few doctors in larger towns who remain,” said Anna Korobchuk, who is leading and coordinating the Mobile Treatment Point teams at APH, and who developed and supervises their work in the de-occupied zones.
“Near the front line we can sense the danger. We avoid attracting attention to our vehicle, especially with Russian drones constantly overhead. We often switch off our phones and sometimes drive without lights to avoid detection,” she said. “It’s dangerous but is rewarding too to know that we have brought help to these people.”
Anna Korobchuk (5th from left) pictured with Pavlo Smyrnov (6th from left) and the Mobile Treatment Point team from their trip to Dnipropetrovsk region in Ukraine.
Korobchuk and her teams often visit villages in the liberated territories of the Kharkiv and Kherson regions and close to front line areas of the Zaporizhzhya region. She hopes to send the mobile clinics into the Donetsk region and other currently occupied regions of Ukraine.
The teams stay in local cities and drive out to the villages each day.
In the cities of Kharkiv and Kherson, the rates of hepatitis, HIV, and tuberculosis are alarming, Korobchuk said.
War, wherever it occurs, makes certain behavior far riskier, predisposing people to an increased risk for infectious diseases, she said. “Without healthcare provision, including timely testing and treatment, infection will inevitably spread in the de-occupied and near frontline zones.”
The often-crowded living conditions typical of war zones also feed transmission.
“With scarce fuel, we see two or three families residing in one house to minimize heating,” she said. “In the cities, internally displaced people have a much higher rate of infectious diseases, possibly because many are from conventionally at-risk groups.”
#HelpNow: Reconnecting to Healthcare as a Refugee
About 6 million Ukrainians have also sought refuge abroad. By the time they reach their destination countries, many are short of medications and in need of medical assistance for chronic diseases or complaints, as well as new ones.
#HelpNow was established by the APH as an emergency response 6 days after the Russian invasion. It primarily aims to help meet the healthcare needs of displaced people, connecting them with medical consultations, especially in unfamiliar situations where language and cultural barriers exist.
Approximately 30,000 of those displaced have HIV and some are also co-infected, and in need of continuing care.
Wherever they end up, most people seek preventive services and/or appropriate treatment. According to APH, in 2023, a total of 1612 persons from key populations received access to HCV care via #HelpNow. Of these, about 95% were co-infected with HIV and received antiretroviral therapy, while nearly 5% were co-infected with tuberculosis. In addition, approximately 25% received opioid substitution treatment.
“Since the war began, we’ve helped people access medical documents if they were left behind or lost when they fled,” said Armen Aghajanov, one of the managers for #HelpNow. “We also ensure minimal interruption to their viral hepatitis treatment.”
They exchange texts on Telegram messenger [a WhatsApp-like service] to provide information, coordination, and navigation to local healthcare services, he said.
In Poland and Germany, which have taken the largest numbers of refugees, in-country representation #HelpNow hubs were set up in addition to the Telegram messenger service.
“These places, even without a physical office, provide hotlines and referral systems to in-country infectious disease specialists, with medical consultation for people with HIV and other co-infections, including HCV,” Aghajanov said. In some cases, they “may even provide a line of communication with the person’s healthcare provider in Ukraine.”
In response to that need for more contact with Ukrainian infectious disease specialists, APH set up online consultations through a platform called Help24, where 30 infectious disease doctors from Ukraine provide consultations. They have taken 15,000 such calls to date.
“None of This Is in Vain”
The importance of people in the de-occupied zones knowing that they are not abandoned is what motivates many of those involved, including Korobchuk.
“Unlike in the larger cities, any sort of normality is gone in Orikhiv, Kupyansk, and Kherson,” Korobchuk said. “Trips with the Mobile Treatment Point teams remind us that there are people waiting for us to bring a small piece of normality and care into their damaged homes and hearts.”
“Every trip is inspiring, especially when you see the eyes of these people and understand what they have gone through, and they still continue to smile, remain kind, and show gratitude,” she said. “They come with flowers for our doctors and bring food for our drivers. On the phone, people say, ‘We remember you and your big white vans. Your doctors saved my neighbor’s life. When will you come again?’ When I hear this, I know none of this is in vain.”
Korobchuk said that they want to commit to rebuilding the health and lives of the Ukrainian people in the long term too.
Even if the war ends tomorrow, and if their plea for funding and medical personnel is forthcoming, they have plans for the first three years post-conflict to continue supplying and rebuilding healthcare services where they are most needed, she said.
The treatment model used by APH to provide HCV care during the war also provides evidence for its sustainability, even under the most difficult of circumstances, preventing treatment interruptions and minimizing loss to follow-up. During the war, retention stands at 98%, and treatment effectiveness is 97%, according to APH.
Whether the insult comes from a virus or a Russian invader, Maksym stands firm against the enemy.
“It is going to be all right,” he said. “Hepatitis will be eliminated, and so, too, the Russian army. That is all I need to say.”
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