NOhep Medical Visionaries Forum at ILC 2022
At the recent ILC, we held a NOhep Medical Visionaries Forum on ‘Hepatitis B cure: Bridging scientific and affected communities. It was an exciting meeting where we explored important aspects of the journey to HBV cure with the leading experts and discuss with fellow ILC attendees.
Veronica Miller, Director, Forum for Collaborative Research
Jordan Feld, Professor of Medicine, Toronto Centre for Liver Disease
Ahmed Elsharkawy, Consultant Transplant Hepatologist, University Hospitals Birmingham NHS Foundation Trust
Fabien Zoulim, Professor of Medicine, Lyon University
The meeting was chaired by Su Wang, Past-President World Hepatitis Alliance & Medical Director, Viral Hepatitis Programs at Cooperman Barnabas Medical Center and delegates heard from each of the speakers on different aspects of hepatitis B cure.
Veronica Miller gave insight into the road to a hepatitis B cure and the role that industry, researchers, regulatory authorities, and patients each play. She emphasised that this interdependent ecosystem needed to work together especially when looking at combination therapies to find a hepatitis B cure. She leads the HBV Forum which brings together the companies developing therapies, academic experts, the patient community and regulatory agencies several times a year to discuss progress and work on different aspects of therapeutic development.
Veronica concluded by saying that a hepatitis B cure cannot be reached without patients and that patients are an essential part of clinical trials.
Jordan Feld provided an update on the recent EASL/AASLD HBV endpoints meeting which was held in Washington DC right before EASL He reported that discussions included endpoints and targets for therapies. . There is a risk that as it is taking longer to reach a hepatitis B cure, investors could pull their funding for the research. They are often looking for short turnaround and studies may take longer. There is a clear role for both people living with hepatitis B amplify the demand for a cure to complement the research drive .
Fabien Zoulim spoke on the work of the International Coalition to Eliminate Hepatitis B (ICE-HBV) and the role it is playing in increasing the visibility of hepatitis B science and bridging the gap between science and the community. It is important to ensure that research is communicated in ways that the lay and patient community can access and understand. To help address this gap ICE-HBV is developing a series of videos on hepatitis B cure. These short videos are designed to help answer the questions and concerns of people living with hepatitis B.
A video in this series by Thomas Tu on ‘What do we mean by hepatitis B cure’ was shared.
You can see all the videos in this series here.
Importantly, the video highlighted HepBcommunity.org which is a global peer-led, volunteer-driven forum to support those living with and affected by hep B. They are dedicated to connecting people affected by hep B with each other and with verified experts in the field, who provide trustworthy and accurate advice. This is another example of a way in which the gap between science and the community is being bridged.
HBVoice is another tool to bridge the gap and enhance advocacy efforts around hepatitis B.
Ahmed Elsharkawy introduced how he has a clinician researcher has helped convene HBVoice which is a diverse group of people living with hepatitis B, healthcare practitioners, researchers and representatives from charities/NGOs to enhance the profile of the hepatitis B community. This group would be a voice for the hepatitis B community and represent those affected. Activities the group would partake in include webinars, sharing lived experiences, political advocacy and developing plans for funding.
Following the presentations, there was a very engaging discussion amongst the attendees. Some of the topics highlighting the important need to raise awareness for HBV and to do more to increase testing, care and treatment in patients given the many gaps that currently exist even as we pursue HBV cure development. Hepatitis D came up as needing to be included and addressed too. Access issues will be key in achieving HBV elimination and will be an important aspect to discuss with the newer therapies. tIt was clear that the people living with hepatitis B need to be brought into many of these aspects and and can be supported by interdisciplinary professionals. Bridging the two communities would raise awareness, build partnerships to support enhanced clinical care for both people living with hepatitis and their families. Furthermore, the partnerships could impact public health initiatives, policy and funding and continue to support the drive to develop hepatitis B cures.