Tackling Hepatitis C in high-risk communities

In this article, Professor Graham Foster discusses his pioneering work in tackling Hepatitis C, particularly in marginalised communities such as the homeless, drug users, and ethnic groups like Pakistani and Bangladeshi communities, who face higher infection rates. Through his work at Queen Mary and Barts Health, he bridges research and clinical practice, driving efforts to provide treatment and improve outcomes for those most at risk. 

Note the views expressed herein are those solely of the author.  

Can you share some insights into your journey into hepatology, and what initially sparked your interest in liver diseases, specifically Hepatitis C? 

I was fortunate enough to do my clinical training at the London Hospital after studying at Oxford University. It was clear that there was a real difference between East London and Oxford, and I was drawn to East London’s rough-and-ready, street-smart atmosphere.

I went on to complete my training in liver medicine, knowing that East London had a high liver disease prevalence and a clear opportunity to make a difference. So, when the chance came to join the team at Queen Mary and Barts Health, I was very pleased. It gave me the opportunity to start building a liver unit in the East End. 

On my very first ward round, what struck me most was the sheer level of deprivation among the patients. Many were incapacitated by severe multi-morbidities – not just liver disease, but liver disease compounded by homelessness, alcohol addiction, drug misuse, and a range of psychosocial challenges. It was a markedly different patient population from what I’d encountered in West London. 

One thing that really stayed with me from those early days was how many young people from Pakistan were dying of Hepatitis C. Most people with Hepatitis C die in their sixties, but we were seeing people in their thirties and forties with liver cancer and end-stage liver disease. It was clear something unusual was happening that hadn’t been properly recognised. When I looked into it, it became obvious that these cases were linked to childhood infections with Hepatitis C in Pakistan. People were being infected at a young age, and because the disease takes 30 to 40 years to destroy the liver, they were dying far too young. 

At the same time, we were seeing people in our drug-using and homeless populations dying in their fifties and sixties. It was obvious there was a real problem here, and it wasn’t being addressed. 

That led me to start conversations with local community leaders. I was fortunate that in East London there was a really dynamic nursing team already out on the streets, supporting people with addiction and related issues. They were very proactive and keen to work with anyone who was willing to go the extra mile. I still remember my first conversation with one of the senior nurses, Mandy Wilkinson, who said, “I’m not testing people who are using drugs for Hep C unless you’re going to treat them.” And she was absolutely right – it made no sense to test without offering treatment. 

At the time, the national guidelines actually recommended not treating people who use drugs for Hepatitis C, which always felt unfair to me. There were no real recommendations for people from Pakistan either, even though it was clearly a major risk factor. It was obvious there was a huge amount of work to do, and I knew the Royal London was the place to do it. 

Tell us, as a professor at Queen Mary and a consultant at Barts Health, how has your dual role allowed you to bridge clinical practice with groundbreaking research? 

I think the key to working at Queen Mary and Barts Health is that they both have a can-do attitude. At Queen Mary, I was given the freedom to pursue the work I felt was important, and Barts Health provided support throughout. 

There aren’t many places where you could say, “I’m going to set up a clinic in the community to treat people with Hepatitis C, even though it goes completely against national and international guidelines,” and be able to just get on with it. But that’s exactly what we did. I was astonished that nobody stopped me. The enthusiasm for this kind of work at Barts Health was unmatched. We went out and treated people in the community – and they got cured. 

What was truly eye-opening was seeing how people responded. I remember one patient, at the end of his treatment, saying, “This is the first thing I’ve ever done that works. I’m going to clean myself up and get out of this.” That was a powerful moment. It made us realise that these patients didn’t need much – just someone to offer them a helping hand.  

We kept pushing the boundaries, and Barts Health remained incredibly supportive. Queen Mary also embraced the academic work because it aligned perfectly with their commitment to social responsibility. I’ll never forget one patient who literally lived in a skip. The nurses would throw his medication over the top of the skip every morning, and he’d take it while bedding down inside. And yet, he cured his Hepatitis C. 

That was a real demonstration of what’s possible when you decide to help. What continues to strike me is how simple it can be – as long as you say, “I’ll try to help.” People respond to that. 

Your work has had a profound impact on understanding how Hepatitis C affects certain ethnic groups. What are some of the most notable findings from your research? 

What we discovered early on was that people from Pakistan are particularly affected by Hepatitis C. We were seeing 30- and 40-year-olds dying of liver cancer due to Hepatitis C, which is something that’s often overlooked in that community. 

When we first started screening and testing in the community, one of the research fellows, a young man from Bangladesh, assumed that Hepatitis C wouldn’t be a concern because they don’t typically use drugs, they don’t drink. And I told him there was something else at play. 

As we started working in the community, it became clear that in places like Pakistan – and to some extent Bangladesh – poor needle sterilisation was causing Hepatitis C to spread, particularly to young children. This meant that many people were getting infected at a very early age and, sadly, dying much too young. Once we understood what was going on, it wasn’t that the virus was any different in these populations; it was simply that they were being exposed to it at a very early age. 

That realisation pushed us to advocate for early screening and treatment. Once we understood the problem, engaging with the community and testing people became much more straightforward. We built fantastic working relationships with the local Imams, who became hugely instrumental in spreading the word about the risks of Hepatitis C and encouraging people to get tested. 

I remember going to the East London Mosque, where they treated me like royalty. They’re such a wonderful group to work with. I spent a happy couple of years visiting mosques all over East London and we really started to make an impact. It also did terrible things to my waistline because the Pakistani tradition is to feed you when you go around. So, I was getting fed three or four times a day with lovely food, which I couldn’t turn down. But the important thing is it did get us out there into the community, and that really paid dividends because it allowed us to understand what was going on.  

After our work in the community here, we expanded the programme to Pakistan, where I’ve had the chance to visit several times. We’re now running a large-scale programme that involves 25,000 people, which I believe will help shape the direction for a nationwide initiative. Pakistan is currently in the process of planning a national Hepatitis C elimination programme. 

I recognise that this will be incredibly challenging in a resource-constrained setting, but our goal is to provide them with a clear roadmap backed by solid evidence. This will allow them to approach funders, including the World Bank, with the assurance that, if they follow this plan, they can effectively eliminate Hepatitis C. I’m confident we’re getting close to proving that – and all we need now is a major donor to step in. Once that happens, we can truly get rid of it.  

Why is it important to focus on ethnic disparities in the prevalence and outcomes of Hepatitis C? Could you share any key data or trends that illustrate these disparities both locally and globally? 

Hepatitis C is a disease of deprivation, and it disproportionately affects marginalised groups, particularly those who use drugs or are homeless. If we were to replace “drug user” with terms like “ethnic minority,” “Jew,” or “Black person,” the way we view these individuals and their treatment would shift dramatically, but at the moment even very senior people talk of ‘drug users’ in very derogatory terms and in ways that would be completely unacceptable for any other minority group. I don’t see why people who have the misfortunate to be afflicted with an addiction disorder should be treated any differently from anyone else. Essentially, Hepatitis C thrives in environments where people are neglected and deprived of proper care. Without outreach and support, the cycle continues. 

One of the major challenges in tackling Hepatitis C is reaching these disadvantaged and stigmatised populations. I’m particularly proud of the National Hepatitis C Programme in the UK, where nearly 70% of those treated come from the most deprived groups, including the homeless and injection drug users. This is a remarkable achievement, and I don’t think there has ever been another programme that has reached these cohorts to such an extent. 

We’re now compiling data that suggests our efforts have reduced mortality within these populations. While some studies, including one from Scotland, claim that people with Hepatitis C simply die with the disease rather than from it, the evidence in England tells a very different story. When you engage with people properly, and support them, outcomes improve significantly. 

The key is not just treating the disease but addressing the root causes of deprivation. If you help people when they are at their lowest, you can help lift them out of their circumstances. Often, it’s as simple as showing people that you’re willing to go the extra mile. When people have been treated as less than human for so long, they begin to internalise that belief. I often tell my patients, “We’re giving you £30,000 worth of medication,” just to shift the dynamic and show that we believe in their potential. 

So, I think we’ve moved the dial. There was a lot of initial pushback, but the programme has worked and the success has been acknowledged. However, what we’d like to see is that this kind of work is fully embraced. As NHS, we should celebrate the fact that we’ve successfully treated marginalised groups, including drug users and those from ethnic minorities. It’s the best Hepatitis C programme that no one has ever heard of – more needs to be done to spread the word and replicate the success.

So, Hepatitis C remains a significant public issue worldwide. What are the current trends you’ve observed nationally and internationally in terms of treatment, eradication and prevention?  

Hepatitis C remains a significant global public health issue, but different countries have adopted various approaches to treatment, eradication, and prevention, with varying degrees of success. Egypt has taken an exceptionally active approach, launching a nationwide programme. They went door-to-door, testing and treating people, and their efforts culminated in the successful elimination of Hepatitis C. It’s an inspiring model of what can be achieved with a strong, coordinated effort. 

Similarly, Australia has been proactive, focusing on reaching out to drug users for testing and treatment. The UK’s programme, particularly in England, is seen as one of the most active in Europe for identifying and treating people. These proactive programmes are making a tangible difference in tackling the disease. 

However, many countries, including the United States, have adopted a more passive approach. In the US, the Hepatitis C programme largely caters to those who have insurance or can afford treatment. Drug users and those without financial means are often left untreated. So, their Hepatitis C rates are rising. 

The consequences are dire. In the US, there are shocking statistics about drug users with Hepatitis C, many of whom are dying from the disease. In some maternity units, around 1% of babies are born with Hepatitis C because their mothers have the untreated virus. And when it comes to organ transplants, very recently in the US, if you wanted a kidney transplant from a donor without Hepatitis C, you faced an 18-month wait. But if you accepted a kidney from a Hepatitis C-positive donor and then took drugs to treat the virus, the wait time dropped to just a couple of weeks because so many people with hepatitis C were dying from drug overdoses and neglect. I am afraid that not much has been done to change that tragic environment. 

The disparity in treatment and access to care is clear, and it highlights how Hepatitis C disproportionately impacts marginalised populations, particularly those with limited access to healthcare. 

In North East London, the work you’re leading in tackling Hepatitis C is highly regarded. What makes this initiative unique, and what are the significant challenges are you facing in the local population? 

The key challenge moving forward will be maintaining the momentum of the outreach work. The community treatment programme we have in place goes far beyond just Hepatitis C. We have an exceptional nursing team who have been working in the community for the past four or five years, building trust and strong relationships.  

Because of this, people often turn to them with a wide range of issues, from mental health concerns and sexual health problems to psychosocial challenges. Our team not only supports them but also helps guide them through the healthcare system – whether it’s referring them to renal clinics, assisting with blood tests, or even accompanying them to appointments. Their role goes far beyond just Hepatitis C care. 

The real challenge, though, will be sustaining this level of community support once Hepatitis C is no longer a public health crisis. There’s a risk that as the disease becomes less of an issue, funding for community work could decrease. One area where we could have done more is in engaging young doctors and medical students. We’ve had a small group of medical students who’ve shown interest, and the experience has been deeply rewarding for them, as it offers almost immediate gratification – a rare thing in medicine. Working with the most deprived communities often provides that sense of fulfilment, and it’s an opportunity for them to reconnect with the motivations they had when they first entered medicine. 

Can you talk about any specific collaborations between Queen Mary University of London, Barts Health NHS Trust, and community organisations that are working to raise awareness and treat Hepatitis C in at-risk populations in North East London?  

Most of our community engagement in the East End has now been completed as we are starting to reach the stage where we have all but eliminated the infection. We are now looking to collaborate with populations that are prone to Hepatitis B infection and we are looking once again to local groups who can engage with us and spread the important health care messages that can stop people dying of treatable diseases.  

In terms of collaborations, I’m a trustee of Pathway, a charity that supports homeless people once they leave hospital. The goal is to make sure they don’t return to the streets without proper support. Barts Health and Queen Mary were involved in the first clinical trial with homeless individuals through Pathway. We’re also working closely with the Pakistani community, particularly through a charity called the Health Foundation, which raises awareness and funds from the Pakistani diaspora in the UK and sends it to Pakistan for important health initiatives. Their next event is in February and it’s always a well-attended and enjoyable gathering. 

And finally, looking forward, what’s your vision for the future Hepatitis C treatment and care, both nationally and on a global scale, and how can the world tackle this public health issue more effectively? 

I believe that in the next few years, Hepatitis C will be effectively eliminated in developed nations – certainly in England, it will be largely a thing of the past. The real challenge, however, will be ensuring that outreach and access to treatment for disadvantaged groups continues. The bigger concern, though, will be from not treating Hepatitis C in the developing world. We’ve seen from COVID, we’re not safe until everyone’s safe. 

If large pockets of Hepatitis C remain in countries like Pakistan or across the Indian subcontinent, people will travel, bringing it back with them. The disease won’t stay contained – it will spread. The danger is treating Hepatitis C as just an English problem, rather than a global one. The irony is that the funding required to address this on a global scale is relatively small. I suspect Elon Musk’s tax bill would pay for all the Hepatitis C treatment in Pakistan that’s needed. So, there’s an enormous amount of good that could be done for relatively small amounts of money, but it’s just about convincing people to make it happen. 

About the author 

Professor Foster is a Professor of Hepatology at Queen Mary University of London and a consultant at Barts Health NHS Trust in East London. He trained in Medicine at Oxford and London Universities in the 1980s and completed a PhD in Molecular Biology in 1992.   

Professor Foster has a long-standing interest in the management of chronic liver disorders, with particular reference to viral Hepatitis and runs a clinical research program studying the natural history of viral Hepatitis, its impact upon patients and their communities and novel therapies for this disease. Professor Foster has a special interest in the care of marginalised communities and has led efforts to expand services to the most vulnerable in our society. He has led national studies investigating community screening for viral Hepatitis and supervises a laboratory research program investigating viral-host interactions with particular reference to AAV and its use in gene therapy. He has published widely in the field of viral liver disease. 

Professor Foster was the national clinical lead for the NHSE HCV program from 2017 to 2023 and remains committed to the national and global elimination of Hepatitis C.