In May 2020, the European Centre for Disease Prevention and Control (ECDC) raised serious concerns about the lack of progress towards the WHO elimination target for viral hepatitis by 2030. The ECDC warned that a high proportion of Europeans living with hepatitis B and C infections seem to be undiagnosed and a large number of people living with diagnosed hepatitis B and C infections are not receiving life-saving treatment. Hepatitis related mortality is thus still high in the region, while there is very little evidence of progress towards the 2030 elimination target of a 65% reduction in mortality against the 2015 baseline, the European Union agency concluded.
Against these figures, the European Commission suggested extending the current European Reference Networks beyond rare diseases to communicable diseases, as part of the new EU-funding programme for 2021-2027, EU4Health. This proposal was very much welcomed by ACHIEVE – the leading coalition advocating to end Hepatitis in Europe – which organized a high-level webinar to discuss what such an EU-funded network should look like to drive forward virus elimination. Entitled ‘EU4Health: How can a European Reference Network on Communicable Diseases advance hepatitis elimination?’, the panelists included:
- Professor Dr. Ansgar W. Lohse, Coordinator of the European Reference Network for Rare Liver diseases (ERN RARE-LIVER), Gastroenterologist and Director of the University clinic Hamburg Eppendorf ;
- Professor Dr. Jeffrey Lazarus, Head of the Health Systems Research Group at ISGlobal, Hospital Clínic, University of Barcelona;
- Dr. Ricardo Baptista Leite, MP, public health expert and founder and President of UNITE, the global network of Parliamentarians committed to achieving political impact towards ending infectious diseases as global health threat;
- George Kalamitsis, ACHIEVE Co-Chair and President of Liver Patients International.
A false sense of security
Viral hepatitis is often referred to as an invisible disease. When scientists developed a cure some years ago, many countries committed to increasing diagnoses and vaccinations. Today, however, the fight against hepatitis is dominated by political inaction: most Europeans remain undiagnosed or are diagnosed too late, while hepatitis’ social stigma prevents many from discussing the disease openly. For Dr. Ricardo Baptista Leite, the development of a hepatitis treatment has installed a false sense of security among policymakers, who tend to perceive the fight against the disease over. “We have a cure, but treatment is only good if it really gets to the patients that need it. The truth is we are not diagnosing those that are under the radar,” Baptista warns. In this regard, ACHIEVE’s Co-chair and former hepatitis patient George Kalamitisis expects this political inaction to have negative consequences on patients and their families, as well as on healthcare systems in the short-term: “It’s time we take action over hepatitis in order to reduce the number of patients that will eventually develop liver cancer and cirrhosis. Otherwise, we will not be able to avoid the financial burden that liver transplantation and treatments for liver cancer will bring to healthcare systems within the EU.”
A European Reference Network on communicable diseases to help end hepatitis
For years, Professor Jeffrey Lazarus at the University of Barcelona has called for support from the European Union to help end hepatitis. In his view, “the European Union should act as the great convener by putting this issue on the member states’ national agendas and by helping end hepatitis through its specialized agencies, while also funding new initiatives such as the European Reference Network on communicable diseases.” More resources and better coordination are therefore needed to help combat the disease, if the EU is to fulfill its commitment towards United Nations Sustainable Development Goals – the key cross-cutting theme of the Von der Leyen Commission.
For Prof. Ansgar Lohse, Director of the ERN on Rare Liver Disease, the EU must have a leading role in combating viral infections. “A European Reference Network on communicable diseases, alongside an ECDC with a stronger mandate, would strengthen the European Union’s response and leadership.” Nonetheless, he acknowledged that the ERN on communicable disease must look different from the current reference networks if it is to effectively fight hepatitis. “Unlike for rare diseases, the challenge for eliminating viral hepatitis is not about pooling expert knowledge. It is about involving civil society and linking health and social care.”
This is very much the view of Prof. Lazarus, who envisions an EU communicable diseases network that not only involves traditional hepatitis stakeholders but also counts on experts in integrated care, civil community groups working with vulnerable populations, general practitioners, etc. By being inclusive, he expects such a network to significantly push forward elimination and also help generate the missing data on along the cascade of care, thus contributing to the European Health Data Space. “We need to end our silo thinking about who is relevant for viral hepatitis. We need a more integrated approach in order to generate hepatitis prevalence data, stop flying blind, and address current implementation problems,” he says.
For Dr. Leite, the EU should build on the awareness generated by the 2020 Nobel Prize for Medicine, which went to the scientists that discovered hepatitis C. “The elimination of viral hepatitis is a short-term commitment that is in real terms achievable. Not fighting the disease is morally wrong and ethically condemnable because treatment is available, and we know how to increase diagnoses and vaccinations’ rates sustainably.”
The impact of COVID-19
The disruption caused by the ongoing pandemic has led healthcare systems and policymakers to focus most resources on fighting COVID-19. Instead of pushing hepatitis further off the political agenda, the panelists call on healthcare systems to adapt the lessons of the pandemic to combat the disease. Prof. Lohse points out that “the pandemic has shown that we only address communicable diseases when they threaten but ignore them otherwise.” For ACHIEVE Co-Chair Kalamitsis, “a positive outcome of COVID-19 is that the general public has become familiar with concepts such as screening, testing, prevention, treatment and immunization. All of which are vital processes for achieving hepatitis elimination.” Similarly, Dr. Leite agrees that the pandemic has illustrated the need for EU-led healthcare approaches in the face of viral diseases, to ensure efficient responses and to prevent treatment inequality across Europe, also pointing to the imperative for the EU to lead the fight against hepatitis globally. “This reference network on communicable diseases would be critical to overcome the barriers imposed by our borders and the barriers we have imposed upon ourselves. If Europe doesn’t achieve hepatitis elimination, who will? We need to use this opportunity to be a beacon of hope for other countries around the world,” Dr. Leite concludes.
Addendum: Since the ACHIEVE webinar on 8 October, the European Parliament’s Lead committee on Public Health, ENVI, has voted to make the fight against communicable diseases one of the objectives of EU4Health by developing and implementing excellence networks for high prevalence communicable diseases. ACHIEVE calls on the European Commission and the Council of the European Union to follow the European Parliament’s perspective, thus allowing the new EU4Health funding programme to drive forward hepatitis elimination.