25 Nov 2020
Community, collaboration and a cascade of care: What viral hepatitis can teach us about COVID-19
We are launching a limited series of columns exploring lessons learned from previous infectious disease pandemics, and how we can apply them to the COVID-19 response. In today’s column Royal Melbourne Hospital Professor Ben Cowie, Director of the WHO Collaborating Centre for Viral Hepatitis at the Doherty Institute and Royal Melbourne Hospital and Professor Peter Revill, senior medical scientist at the Royal Melbourne Hospital, Doherty Institute and co-founder of ICE-HBV highlight key lessons learned responding to viral hepatitis – and what COVID-19 can teach us in return.
1. It’s critically important to engage community
Engaging with community in a respectful and bi-directional way is an essential lesson from viral hepatitis in responding to COVID-19. Engagement doesn’t simply mean translating information and sharing it on a website, but actually sitting down and working with communities directly, speaking with them and hearing what their ideas are. A key element to this is transitioning the response away from a centralised government model to a model that actually places community in a leadership role, utilising bi-cultural workers, co-design methods and co-delivering programs.
These lessons have been essential in the response to hepatitis C and we’re also seeing movement in this space with hepatitis B, where community champions are coming to the fore and a dialogue has been created. We have had first-hand experiences through ICE-HBV, engaging with people living with hepatitis B very closely and learning from them.
In Victoria, the COVID-19 burden has been disproportionate in cultural and linguistically diverse communities. It has been suggested that a significant contributing factor behind the second wave of COVID-19 in Victoria was ineffective engagement with some communities by the broader health system, leading to difficulties in addressing COVID-19 transmission in significant parts of the northern and western Melbourne. Moving forward, it's going to be critical to engage with the broader community and ensure that we’re not leaving people behind, increasing health literacy and how it interfaces with cultural and linguistic diversity.
2. Ensure high levels of appropriate testing that links positive people to care
This is a lesson learned from hepatitis C, where we've tested roughly 80 per cent of people living with the virus in Australia and created a system where a positive diagnosis can be used to link a person to care. While more can be done in this regard, steps have been taken in recent years to promote this linkage to care following diagnosis. Ensuring timely and appropriate care, this process can save a person’s life.
We have not had this process in place sufficiently for COVID-19. There was insufficient testing, particularly of the most at risk communities. Furthermore, when the second wave started, parts of our pathology system struggled to cope with the testing demand, resulting in some people waiting days for their test results.
Since that time, there's been a huge investment in COVID-19 testing capacity and we’re now testing up to 20,000 people per day, which is essential. There’s also been the introduction of COVID Positive Pathways - virtual COVID-19 wards, which we set up initially at The Royal Melbourne Hospital and subsequently across Victoria, to ensure that there's a clinical wraparound at the primary care level for everyone diagnosed positive with COVID-19. We also need to involve the new Local Public Health Units in this response as well, so that care is embedded within the communities most affected. Having these health system reforms in place will be absolutely essential if we were to face a third wave of the current pandemic in Victoria, and for management of future pandemics.
Another point that’s important to make is on appropriate testing, and this is something that hepatitis can learn from COVID-19. Through COVID-19, the community has gained an education around the importance of virus testing. More than three million SARS-CoV-2 tests have been carried out in Victoria this year alone. That number is 50 times greater than the number of people living with hepatitis B in the state, and yet we've only diagnosed two thirds of people living with hepatitis B here.
“There's an urgent need to diagnose every person living with chronic hepatitis B and C in this country and linking them to care. It is very important that we learn this lesson from COVID-19 and apply it to viral hepatitis.”
3. Engage GPs at the centre of the response
This is a lesson learned from both hepatitis C and hepatitis B. In 2016, a specific provision was made to allow GPs to prescribe antiviral drugs for people living with hepatitis C. Roughly half of all people living with hepatitis C have been treated between 2016 and 2020, and the majority of these cures have been prescribed by GPs. We’ve seen treatment levels go up from a few percent to roughly half of all people living with hepatitis C having been cured. It has been a game changer – and more importantly, changed the lives of so many people previously living with chronic hepatitis C.
On the other end of the spectrum, hepatitis B still requires specialists to access antiviral therapy, or GPs who have completed additional specialised training in their own time, so there’s quite a high barrier for them to achieve. We are currently treating around 10 percent of people living with hepatitis B with antiviral therapy, which is roughly half of the national strategy target (and only a third of those we believe need treatment). We must unlock the potential of GPs to provide care, including treatment and monitoring of people living with hepatitis B. Without this, we are locking in place barriers to accessing care. It also increases waiting lists for public hospitals’ hepatitis clinics, with recent evidence suggesting that the average wait for an initial appointment in some public hepatitis clinics in Melbourne is greater than a year. The longer a chronic hepatitis B infection goes untreated, the greater the risk of developing cirrhosis and liver cancer. We must engage GPs at the centre of the response and empower and support them to monitor and treat hepatitis B – as we have for HIV and hepatitis C.
Engaging GPs in the public health response for COVID-19 at the local level will allow the whole health system to respond more effectively. This has been recognised by the Victorian Department of Health and Human Services (DHHS), including through the COVID Positive Pathways, and additionally by ensuring that GPs are copied in on test results for their patients who present to community screening clinics for COVID-19 - to help bridge the care gap.
4. Stigma and discrimination can never be tolerated
We have done our best to de-stigmatise conditions relating to viral hepatitis and this lesson is vital for COVID-19. We know that when people feel stigmatised or discriminated against, they do not engage with testing, treatment or harm reduction. It results in terrible public health outcomes, as well as individual health outcomes. We’ve also had strong feedback from the community that when there is stigma and discrimination associated with a positive COVID-19 test, people are much less likely to be tested.
Unacceptably, while there has been much work on de-stigmatising viral hepatitis, this still occurs far too often here in Australia, and globally, with tragic consequences for those affected. Loss of employment, loss of friends and contact with family, serious mental health consequences – all these outcomes still happen in viral hepatitis.
One lesson that we hopefully learn from COVID-19 is that having a viral infection is a health condition that can affect anyone. There’s an opportunity here to reduce stigma, because so many people have experienced a viral infection of one kind or another and it’s something that needs to be diagnosed, managed and treated without any discrimination – whether it’s viral hepatitis, HIV or COVID-19.
5. Collect and use data to make information available at the local level
One of the major challenges with the COVID-19 response is that we had limited information available on who was being tested. DHHS was notified with the person’s name, address and date of birth - but nothing more. For instance: Which country were you born in? What's your occupation? Are you Aboriginal and Torres Strait Islander? What languages do you speak? This information is essential when responding to an outbreak and it can help inform responses by government, clinicians, community, policy makers, police, advocates and beyond.
It’s important that the best quality data is obtained and de-identified information shared widely. These data must be appropriately contextualised and shared in a way that does not stigmatise, however it must be shared broadly and transparently – including with the public – to demonstrate the reasons behind public health decisions and to maintain the faith of the community in why a range of steps are necessary in the public interest.
6. Invest in research, innovation and collaboration
After many years of under-investment in responses to hepatitis B, recently renewed focus on research, innovation and collaboration is leading to substantial progress. ICE-HBV is an example of building consensus and coalitions between people who are carrying out cutting edge research that is allowing far better, faster and more coordinated progress than any of those individual teams alone. It has brought together scientists, clinicians, people living with hepatitis B and stakeholders from across the globe to unite a global scientific strategy for hepatitis B cure. This is the first global scientific strategy for hepatitis B cure and would never have happened without an organisation that existed to bring those people together. There is plenty of goodwill out there, however you need an organisation and leadership to bring those people together. The global COVID-19 response can learn from this approach.
We’ve seen with COVID-19 the importance of drawing upon expertise in virology in responding to the pandemic. Here at the Doherty Institute for instance, our scientists were the first laboratory to isolate and grow the virus outside China and the first to share this globally, which was critical to the global response, and a number of diagnostic, vaccine and antiviral programs have benefited from this early information sharing.
Moving forward, we all have a lot to learn from the response to COVID-19. It’s tragic that far too many people have lost their lives to COVID-19, however we’ve seen how powerful investment into research and collaboration can be, swiftly leading to positive public health outcomes.
Today, there’s an estimated 257 million people living with chronic hepatitis B and 71 million living with hepatitis C globally. These viruses are not going away. It is important to recognise that one million people are estimated to lose their lives every year from viral hepatitis and will continue to do so until we diagnose everybody affected, engage them in care, treat them, and – ultimately – offer them a cure.