A call for advocacy and patient voice to eliminate hepatitis B virus infection

Abstract

Hepatitis B virus (HBV) infection is estimated to affect around 300 million individuals worldwide, but has been neglected by health-care provision, education, research, and policy. 1 O'Hara GA McNaughton AL Maponga T et al. Hepatitis B virus infection as a neglected tropical disease. PLoS Negl Trop Dis. 2017; 11e0005842 Google Scholar , 2 Polaris Observatory CollaboratorsGlobal prevalence, treatment, and prevention of hepatitis B virus infection in 2016: a modelling study. Lancet Gastroenterol Hepatol. 2018; 3: 383-403 Google Scholar In light of the WHO goal to eliminate viral hepatitis as a public health threat by 2030, there is an urgent need for enhanced advocacy for HBV. Organisations representing and led by individuals with tuberculosis, HIV, and hepatitis C virus (HCV) infection have set a precedent for the provision of infrastructure, education, peer support, fundraising, and advocacy, often with support from large international donors. Parallel examples of advocacy for HBV are scarce, highlighted by a patient describing the HBV community as “the forgotten people” (appendix p 1). Enhanced interdisciplinary action, which can have far-reaching benefits, is urgently needed to promote and diversify representation of people with lived experience of HBV infection (figure). We convened an interdisciplinary group to gather evidence and set out a framework for action, which we present here, considering the challenges and barriers to engagement, and reflecting on the need for patient voices to drive progress.