HCV in Europe: Respect Patients and Get Peers Involved

AMSTERDAM — Around 1.8 million people are infected with hepatitis C virus in European Union and European Economic Area countries, according to the latest estimates. The burden is particularly high among people who inject drugs, those in prison, and some migrant populations. Many with the infection are undiagnosed, receive a diagnosis late in the course of disease, or are not receiving treatment. Now, experts at the European Association for the Study of the Liver (EASL) Congress 2025 say that engaging peer workers with lived experience of hepatitis C and other liver conditions is essential to meet targets around liver diseases, including the 2030 World Health Organization global hepatitis C elimination strategy.

Panel discussion during EASL session titled “Patient & Advocate Forum – Culturally Competent Care: Providing for Patients in Marginalized Communities”“This isn’t just about medication. It’s about treating people with dignity, listening to their experiences, and tailoring services to meet them where they are,” said Rachel Halford, chief executive officer of the UK-based national charity The Hepatitis C Trust, who spoke at the session. “It’s about a whole system change. There’s a huge need for healthcare systems to move beyond tokenistic inclusion toward true coproduction and service delivery with peer workers.”

Halford called on governments and health systems across Europe to meaningfully engage people with lived experience in the design, delivery, and evaluation of hepatitis C services. This involvement is essential, not only for advancing elimination goals but also for addressing systemic stigma, social marginalization, and policy shortcomings.  

“Peers have the trust of communities that clinicians can’t always reach. If we want elimination to succeed, peers must be part of the workforce — not just part of the conversation,” she added in an interview with Medscape Medical News. 

Those who have direct lived experience of hepatitis C or substance use bridge this gap between medical care and marginalized groups that are lost to the health services by offering culturally safe, nonjudgmental, and community-informed support. “We need greater collaboration, trust, and shared responsibility,” she said.

Halford also stressed the need for more integrated care pathways that address co-occurring issues such as mental health, substance use, and housing instability — factors that disproportionately affect people at risk for hepatitis C.

Cultural competency, integration, and peer inclusion are important factors in caring for people from marginalized communities with liver disease, agreed Minneke Coenraad, MD, head of hepatology at Leiden University Medical Center, the Netherlands. 

Since 2017, disparities in treating liver diseases are increasingly recognized, Coenraad explained. This has led to the establishment of a national-level monitor for regional differences in diseases in the Netherlands. “Despite being a very small country, here in the Netherlands there are clear regional differences in excessive alcohol use in adults, as well as in obesity, which is one of the risk factors for MASLD [ metabolic dysfunction–associated steatotic liver disease].”

Reasons underpinning these disparities are largely socioeconomic, including educational level and differences in income, “but it’s much more complex with, for example, ethnic background and other factors also at play.” 

Speaking as a healthcare professional in daily practice, Coenraad pointed out that “increasingly, we have issues with language barriers with non–Dutch native speakers and misunderstanding, especially when we share complex information during a consultation. We rely on having translators available.”

Coenraad also raised concerns about the digital divide, as health services shift toward e-health platforms, which may inadvertently widen disparities. “I welcome developments in e-health but more and more, as we’re moving towards electronic patient files, electronic consultations, teleconferences, and so on, these are not always equally accessible to everyone, and we need to take care to avoid increasing health disparities in the future.” 

Ensuring Access and Follow-up With Care PlansIllustrating a possible solutions-focused intervention, Coenraad referred to the CELINE project (chronic hepatitis C elimination in the Netherlands). This national initiative across 45 centers aims to eliminate chronic hepatitis C by identifying and reengaging patients who have been lost to follow-up and offer them care with often-curative therapies, she explained.

This loss to follow-up is a really big issue, she said, especially in minority populations — “another part of the iceberg” of people who require treatment.

Highlighting the results of CELINE that were published in 2022, Coenraad said that, of the 1537 eligible patients who were lost to follow-up, contact was established with 888 individuals and 219 were reevaluated; 143 (83%) had active hepatitis C virus infection and 123 (86%) commenced antiviral treatment. 

“They have been traced down and [were] asked, ‘Do you want to receive any information again and consider treatment?’ and a large proportion of them agreed to treatment with hepatitis C DAAs [direct-acting antiviral drugs],” she said.

The project also investigated factors associated with this loss to follow-up and found that socioeconomic factors were mainly responsible. 

“Reengaging with patients is really important,” she said. “In our region in Leiden, we work together with regional prisons, as well as hospitals, in order to trace down patients with hepatitis C, in order to treat them.” 

Implicit Bias Often at PlayLoreta Kondili, MD, PhD, a specialist in gastroenterology and hepatology and professor at Saint Camillus International University of Health Sciences in Rome, Italy, highlighted how implicit bias lies behind a lot of decision-making. 

Loreta Kondili, MD, PhDFor example, “[d]espite guidelines recommending treatment for all, some clinicians hesitate to offer antiviral therapy to people with a history of injection drug use, fearing nonadherence or reinfection, despite evidence that outcomes are comparable.”

“We really need to reduce stigma in liver disease care, use respectful language, and recognize our own biases. Also, we need to work systematically with communities and offer flexible, multilingual services and use inclusive educational tools,” she said. “Providers must counter stigma with unbiased care across the course of disease. We need to highlight positive changes and express empathy and support,” she added. 

Alexei Lakhov, executive director of the European Network of People Who Use Drugs and a member of the European Liver Patients’ Association, Brussels, Belgium, reinforced Halford’s message, saying that involving peer workers in hepatitis programs in Europe allows them to share their unique insights from their personal journeys, which can to more empathetic and tailored interventions.

He advocated for more coproduction in community services, where peers are not simply consulted but equally involved in decision-making structures. “Peer workers need the same access to resources and responsibilities as other employees to empower them and enhance their effectiveness,” he explained.

Rachel Halford (left) and Alexei Lakhov (right)He added that there is a need to create platforms and structures, including employment policies, to facilitate peer work and to enable peer workers and professionals to exchange knowledge to enrich understanding, and improve service outcomes. “I’d like to see organizations consider factors like health-related schedules and housing to improve the overall quality of life for peer workers, and to ensure that peer workers are fairly compensated, acknowledged for their contributions, and supported in their continued engagement.”

Lakhov highlighted the importance of being mindful of potential emotional triggers and offering flexibility to ensure peer workers can perform their roles sustainably. “It’s also vital to ensure that other staff are trauma-informed and have relevant training to mitigate potential workplace conflict. Organizations may need to restructure their employment policies in order to facilitate peer work.” 

“Clinicians have to be taught how to work with peers, just as peers are trained to navigate healthcare systems,” he added. “This is not a one-way street.”

“The rhetoric around inclusion is strong, but the follow-through is still weak,” Lakhov said. “We’re still seeing programs designed without us, evaluated without us, and presented without us. That has to change,” he told Medscape Medical News in an interview at EASL.

Coenraad, Kondili, Lakhov, and Halford reported no relevant financial relationships.