Finding hope in a pandemic: A conversation with two hepatitis C experts

Views on how the pandemic has influenced the future of how we find and help people living with the disease.

If necessity is the mother of invention, then the past year has delivered a host of new solutions because of the COVID-19 pandemic. These innovations have revealed a clearer picture about how to deliver more efficient care, and some experts believe these innovations are here to stay.

For those on the frontlines working to eliminate the hepatitis C virus (HCV)1, it has inspired creative problem solving to reach the estimated 71 million people worldwide who are infected with HCV.

For these people, especially those on the margins of society, ripple effects from the pandemic created more challenges to finding care. As a result, telemedicine has become mainstream. New approaches to testing large numbers of people have emerged and there is renewed optimism to reach the World Health Organization’s goal to eliminate HCV by 2030.

Rachel Halford, CEO of the Hepatitis C Trust, a patient organization that works across the UK, and Dr. Stanislas Pol, head of the liver unit of Hôpital Cochin in Paris, France, have been working throughout the pandemic to educate, test and treat patients with HCV to help sustain momentum toward eliminating the disease. They recently met virtually to discuss lessons learned during the pandemic, new ways of delivering care, and why they’re optimistic about eliminating HCV.

For people living with HCV, what are some of the biggest challenges from the pandemic?

Rachel Halford: The biggest issue that we have seen during the COVID-19 pandemic with our work as a patient advocacy group has been decreased access to testing, especially for those already outside of the healthcare system. In our work with people experiencing homelessness in the UK, for example, this has been challenging, but we’ve also seen innovative thinking about delivering testing that could be a model for the future.

During the pandemic, a government initiative opened hotels to house people experiencing homelessness. One of the remarkable things that we managed to do very quickly starting in London was get all the different agencies who are working to eliminate HCV to work as a team to deliver testing to entire hotels.

Dr. Pol: Where I work, we had a 50% reduction in the number of treated patients during the pandemic as compared to the same period one year before. So clearly, we had a significant decline in the access to the treatment for our patients. This is still true for the entire year of 2020, and we’re still seeing the same trend in 2021.

Most of the priority patients, such as those with cirrhosis or complications of cirrhosis, were still treated because they were in the hospital. But a lot of patients were anxious about coming to the hospital due to the risk of COVID-19 infection, so they mainly stayed at home. And so clearly, screening and treatment declined.

We've also seen innovative thinking about delivering testing that could be a model for the future."

Rachel Halford
CEO The Hepatitis C Trust, UK

What can be done to address the concern or confusion that many HCV patients have felt about visiting their doctor during the pandemic?

Dr. Pol: I think that education remains the crucial point. Monitoring and follow up of patients with severe underlying liver disease, namely extensive fibrosis, is critical, but since a lot of patients were afraid to come to the hospital, we have seen delays in diagnosis. We know that even with a three-month delay there is a significant impact in the care of liver cancer.

We also need to re-educate healthcare providers about the importance of testing and treating people for HCV. That’s needed for both general practitioners and the healthcare providers who are working in the community settings for patients with intravenous drug use, migrants, prisoners, and other at-risk populations. Messages get lost over time, so we need to re-educate the healthcare community about the ease of diagnosis and treatment that’s possible today.

Halford: There needs to be an investment in some wider education. The majority of the people that we work with come from marginalized communities, and we know where they are. So it’s about going back, re-educating them, and reiterating the messages about the importance of getting tested and treated.

I think that it’s about being really proactive in working in partnership to get the messages back to the community as well. One of the things that we’ve been doing is encouraging people to come back and re-educating them. We’ve been doing whole testing events where, for a few set days a week, we and our partners will go to a location and carry out lots of testing, lots of promotion, and lots of speaking to people.

Telemedicine, given the fear of the patients to come to the hospital, really makes a great change in the care of patients.

Dr. Stanislas Pol
Professor of Hepatology and Gastroenterology, Universite' Paris, Descartes, France

How can we still locate and screen patients in the COVID-19 era?

Halford: What we’re seeing is that the cascade of care can be shorter and smoother with the use of telemedicine. In the North of England, for example, there was a clinician who literally did all his assessments through telemedicine and then nurses in the prisons were able to treat everyone who tested positive.

Dr. Pol: In France, and probably in most countries, marginalized populations are always at higher risk of neglected care. And that’s a really big issue in France for migrants and for a lot of intravenous drug users. Again, education is critical here, both for patients and for providers about the importance and testing and treatment.

What are the most important takeaways from the COVID-19 pandemic?

Halford: I think the learning that we take forward from COVID is the importance of partnerships to fight HCV. As human beings, when we’re under pressure we’re often at our best. I think that we saw some people really at their best in the way in which they came together. What we saw during COVID was people come together, different organizations come together, and work in partnership really effectively. It’s reassuring that we can all come together, and we can work that well under extremely difficult circumstances. So, as we move forward and very slowly come out of these restrictions, we have the confidence that we can do this.

Dr. Pol: Clearly, I think that the need for telemedicine, given patients’ fear of coming to the hospital and the political necessity of social distancing, can really make a great change in the care of the patients. We have organized telemedicine consultations with patients that have been effective, and I think that this will still be active for a long time, probably forever, because it has been so positive. There are social considerations that still need to be acknowledged, because not everyone has access to telemedicine, but I think we’re now in a new time with telemedicine and it has been really accelerated by the COVID-19 pandemic.

" I'm actually quite hopeful and I'm not about to give up on finding the missing millions because I still believe that we have the opportunity to do that.

Rachel Halford
CEO, The Hepatitis C Trust, UK

How do you feel about the possibility of eliminating HCV as a disease?

Dr. Pol: I’m encouraged by the creativity we’ve seen across the different fields we are involved in. Access to screening and treatment has been affected, but we have discovered new ways to manage these different steps, especially through telemedicine, so we are on the right path forward.

Halford: My hope is that as we in the UK are beginning to come out of the pandemic slightly, we are beginning to see that partnerships formed during the COVID-19 pandemic have been maintained. That this new way of working is continuing.

I’m actually quite hopeful and I’m not about to give up on finding the missing millions – the millions of people estimated to be living with HCV but unaware of their disease – because I still believe that we have the opportunity to do that. We just have a year that’s missing. It doesn’t mean to say we’re not going to do it and I don’t think we should give up on it just yet.

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