Chari Cohen, DrPH, MPH, is President of Hepatitis B Foundation. Catherine Freeland, PhD, MPH, is the Associate Director of Public Health Research at the Hepatitis B Foundation.
Q: Dr. Cohen, you have been with the Hepatitis B Foundation since 2001 and have seen viral hepatitis advocacy evolve through many public health changes and challenges and Dr. Freeland you have chosen to dedicate your career to this issue area; what are the main challenges you both see facing viral hepatitis today?
Dr. Cohen: Overall, in the U.S. and globally, viral hepatitis continues to be highly under-prioritized. We’ve seen progress over the years, but whenever global hepatitis reports or U.S. surveillance reports come out, I am astounded by the fact that these chronic diseases that lead to so much illness and death are continually under-prioritized. That is especially true for Hepatitis B. In the viral hepatitis realm, Hepatitis B is not seen as a priority for viral hepatitis elimination in many areas of the world. Prioritization for elimination mainly constitutes more funding for Hepatitis C elimination efforts. What we really need to do is help decision makers, leaders, and funders understand the urgent need associated with Hepatitis B prevention, diagnosis, and treatment. This mission is especially critical now, since we are seeing increases in new infections in the U.S. and around the world. We’re also seeing increases in Hepatitis B mortality according to the new global hepatitis report. In the U.S., we continue to see health disparities associated with both infection and mortality.
Despite continued health disparities, persistence of acute and chronic infections, and increases in Hepatitis B-related mortality, we have still seen progress. There are new WHO guidelines that will simplify and expand treatment – to some extent – in the U.S. There are universal recommendations for vaccinating and screening all adults as well. But these recommendations are not going to make improvements if they are just documents. We need to be able to implement these recommendations and overcome some of the systemic and policy challenges to address viral hepatitis.
Dr. Freeland: Hepatitis B is comparable to illnesses like HIV, tuberculosis, or malaria. But the funding cascades are so small, despite the impact of Hepatitis B on so many more people. It is so underprioritized and underfunded, globally. As a result, some of the most vulnerable people cannot afford testing, management, and treatment. Many people are still undiagnosed for Hepatitis B, and those that are diagnosed face challenges accessing standard management practices for Hepatitis B. We hope that governments will be taking up these new guidelines, but it will require effort on our part to really make sure that the guidelines are widely implemented. Then we can work towards addressing these significant health disparities in particularly low- and middle-income countries — where the burden of Hepatitis B is high.
Due to this under-prioritization and under-funding, awareness of Hepatitis B is low, specifically among the general population. Additionally, there’s a lot of misinformation regarding how Hepatitis B is transmitted, especially in local communities. This leads to stigma and discrimination, impacting economic livelihoods for people living with Hepatitis B. Really, we have a lot of work to do across a lot of levels. There are also significant psychological and social impacts associated with Hepatitis B that must be considered when we’re thinking about these guidelines and policies, so there is a lot of work to do to get to the elimination goals that WHO has set.
Q: You were the senior and lead authors, respectively, on a recent commentary in The Lancet Gastroenterology & Hepatology, in which you asserted that people living with Hepatitis B should have a voice in new treatment guidelines. Can you speak further to your position on this issue, as well as what occasioned the commentary?
Dr. Cohen: We engage with thousands of people living with Hepatitis B each year. We have learned that what they experience and perceive related to treatment eligibility and treatment outcomes has not typically been aligned with how clinicians manage and treat Hepatitis B. People living with Hepatitis B have physical, social, emotional, and professional life impacts. It’s critical for these impacts to be addressed and treated appropriately. For example, some of the top priorities for people living with Hepatitis B are lowering liver cancer risk and lowering risk of transmission. There are mental health impacts from both of those. People often want to start treatment to help address these quality-of-life challenges. However, current professional medical guidelines don’t consider these quality-of-life issues. As we engaged with more people, with the knowledge that some of the professional medical societies were working on updating their new Hepatitis B treatment guidelines, we wanted to make sure that people living with Hepatitis B were included. The patient’s perspective should be important to the people treating them.
Dr. Freeland: Making sure that people with lived experience are at the forefront of guideline development – because they are the people that the guidelines will most impact – is critical for the guidelines being applicable and generalizable as much as possible to people living with Hepatitis B. If we don’t do this, there’s no way that the guidelines will be relevant to people that are directly impacted. This commentary came about because of the updates to the guidelines that set forth recommendations for how Hepatitis B should be managed. Often, patient perspectives are seen as an afterthought. We’re starting to see this on the ground, and we really want to ensure that it’s at the forefront of these decision-making processes.
Q: Many other areas of public health, including notably the disability and HIV advocacy communities, have also been pushing for more of a voice for people with lived experience in determining policy, stating that the norm should be, “Nothing about us without us.” Why do you think the Hep B community specifically needs to adopt this stance?
Dr. Freeland: There’s such a lack of knowledge associated with Hepatitis B. A lot of times, when people are first diagnosed with Hepatitis B, there is a lot of social isolation and fear associated with that initial diagnosis. The goal of our storytelling efforts is really to make people feel comfortable and empowered with their Hepatitis B diagnoses, as well as making sure people are aware and have accurate information from people with direct experience. Many of the stories we have are relatable to experiences people have had. We’ve had people reach out to us and say, ‘this is exactly how I felt, and I appreciate being able to see someone else who experienced a similar situation – it’s good to know I’m not alone.’ People are then empowered to reach out, get connected and share stories more widely. A lot of times, people don’t want to speak out because of the fear of stigma and discrimination. But when they see others start to do it, it becomes a larger movement. From the movement, our storytellers become our advocates and our biggest champions; they push a lot of the agenda forward and guide a lot of our programming. That’s how it should be, because I can’t truly understand what it’s like to live with Hepatitis B. I understand its impact on people, but I can’t understand it like someone living with it. It helps the data collected at the foundation go so much further – because people understand and empathize with storytellers and the impact that Hepatitis B has had on their lives.
Dr. Cohen: We’ve seen the powerful impact of patient advocacy in the face of other diseases – and we believe very strongly in the power of the voices of people with lived experience. People in the Hepatitis B community have been left out of the discussion for far too long. One of the reasons that we started the storytelling program was because we knew we needed a stronger advocacy voice both in the U.S. and globally. We are hoping that, as people’s voices get stronger and they get more comfortable sharing their stories, we can create some demand for people living with Hepatitis B to be included in research, clinical trial development, public policy decisions, and their own treatment decisions.
Q: Dr. Cohen, you noted that “The new guidelines need to be relevant to the real-life conditions that exist in a range of countries around the world, especially those where hepatitis B is most prevalent, such as Africa and Asia. A significant barrier is viral load testing, which remains a key part of treatment eligibility but out of reach for most people.” Some efforts at U.S. Hepatitis C elimination have been adopting a microtargeting approach; are broad guidelines still useful when the epidemic is often so hyperlocal? Or is it better to have more targeted guidelines?
Dr. Cohen: Recently, we brought together a panel of 35 multi-sectoral experts on Hepatitis B to discuss the future of Hepatitis B treatment and treatment guidelines. The consensus was that there is a need for guidelines that provide strategies for flexibility based upon resources. It’s important at this point to have general guidelines, but within those guidelines there should be guidance for managing and treating Hepatitis B in different settings. For example, in low resource settings, how do you make treatment decisions when there’s no access to Hepatitis B viral load testing?
General guidelines can be both flexible and targeted towards micro-elimination. Sometimes we overcomplicate things and think that we must have guidelines that allow for flexibility and consider the needs of every community. It’s important to strive for guidelines that are simple and accessible, so that non-specialist providers and providers in low resource settings can treat people. We should also make sure the guidelines consider patient preference, whether broad or strategic. In the panel, experts unanimously felt that a patient asking to be treated should be a major consideration for them to decide to prescribe antivirals. It’s not something historically seen in guidelines, but we think it should be there.
Dr. Freeland: Simplicity is really key here. We tend to make things a bit more complicated than they need to be with treatment, and that just muddies the water for providers at local and primary levels – even in the U.S. But in speaking with people who have lived experience, each situation is different. One thing we found from the WHO survey we did — which in turn informed the updated WHO guidelines on values and preferences – was that people do want to be engaged and have ongoing discussions with their providers. Each person has a unique experience and might want to start, stop, or not be on treatment for specific reasons. Cost is certainly a factor, as well as the fear of liver cancer or transmission to others. But having flexibility in the guidelines, along with simplified guidelines, really allows for these conversations to be had. And those conversations are the most important thing when we talk about sustained impact and ensuring that the guidelines are meeting people where they are.
Q: Hepatitis Awareness Month is a chance to raise awareness about viral hepatitis in the U.S. What do you feel like is often left out of the conversation that we should be talking about more?
Dr. Freeland: Hepatitis Awareness Month is a great reminder to get engaged with our local communities. We’ve been trying to do that and encourage our local partners across the U.S. and beyond to do the same. It does what it’s meaning to do in terms of raising awareness, but we could do a better job. Hepatitis B is something that impacts people every day of their lives – and it does so in a significant way. These impacts are rarely a part of these larger conversations about broad elimination efforts and universal healthcare discussions we’re having at the global level. Even in the U.S., it’s often dismissed and overshadowed by Hepatitis C. But we are starting to see the shift from under prioritized and underfunded, which is encouraging.
Hepatitis B is getting more attention now. We have tools to reach the WHO elimination targets globally. We have a vaccination that’s worked wonderfully. We know how to prevent Hepatitis B for future generations, and we have great treatment and ways to manage those with Hepatitis B to prevent liver cancer. We’ve just been slow at adopting and getting the treatment where it needs to go, as well as getting information to providers on the ground – where it’s most needed. It’s a resource limitation that is stuck in a chronic cycle that we’ve had to deal with. I hope that this changes in the future, as we continue to bring more awareness to this issue and highlight resources for this significant public health challenge. Hepatitis Awareness Month does help to put the spotlight on viral hepatitis and Hepatitis B specifically, but we certainly have a long way to go to really reach our goals and make sure that people with lived experience are getting the care that they need while simultaneously preventing liver cancer.
Dr. Cohen: There are a few specific areas that need to be talked about more in terms of Hepatitis B. One is the need for a cure or functional cure. Globally, even among key thought leaders, it is thought that because we have a long-term antiviral treatment, we don’t need a cure. But the current antiviral treatment only reduces liver cancer risk by 60% for people with hepatitis B. There’s still a gap there. We need better treatment options that do not require people to be on them for life, while eliminating the risk of liver cancer. Lifelong treatment is not necessarily an accessible or affordable option for anyone around the world.
Another area that isn’t talked about enough is the critical gaps with Hepatitis B surveillance in the U.S. for chronic infection, new infection, and Hepatitis B-related mortality. The fact that Hawaii can publish such comprehensive reports on chronic Hepatitis B infection and mortality is extremely unique. They make it happen because they prioritized it. Most states could not do what they’re doing in Hawaii – it is certainly an area that needs to be worked on. Surveillance is necessary – and there’s never enough money for it. It’s extremely difficult to ask for money for both surveillance and programs, although they both need each other to continue to succeed.
We also don’t talk enough about the mental health impact of living with chronic viral hepatitis. Living with a chronic, potentially progressive, infectious disease has implications throughout one’s lifespan — from dating and disclosure to choosing a career, to having children. There is this added mental health impact that is continually burdensome – and we certainly don’t talk about it enough.
