Interview with the Hepatitis B Foundation
The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. We’re proud to partner with them to help people living with hepatitis B find and take part in clinical trials.
We recently had the privilege of speaking with Michaela Jackson, MS, the Prevention Policy Manager from the Hepatitis B Foundation. We touched on promoting disease awareness, how COVID-19 is impacting people living with hepatitis B and what support is available, and current awareness initiatives led by members of the hepatitis B community.
An interview with the Hepatitis B Foundation
Antidote: Can you tell us a bit about the Hepatitis B Foundation? What is your mission and how do you work to achieve it?
Michaela Jackson: We are a non-profit organization that is dedicated to finding a cure for hepatitis B, and improving quality of life for those affected by hepatitis B.
Our work is divided into three main focuses: Outreach and Education, Public Health Research, and National Advocacy. We partner with local, state, national, federal, and international organizations to promote hepatitis B education and screening, link individuals to care, eliminate barriers to care, and increase the prioritization of hepatitis B.
Antidote: You also support patients with hepatitis D and liver cancer. Can you tell us about the work you do in those areas?
Michaela Jackson: Many people do not make the connection between hepatitis B and the risks for hepatitis D (the most severe form of viral hepatitis) and liver cancer, which makes addressing these topics critical to our work! Our programs Hepatitis Delta Connect and Liver Cancer Connect are designed to raise awareness, connect people to the right resources, promote screening for hepatitis D and liver cancer, and offer support on their journeys. The programs help individuals take an active role in their disease management. Information on risk factors, updates on new drugs, and questions to ask your doctor are available through our programs, in addition to the newest clinical trials for liver cancer and hepatitis D!
Antidote: The COVID-19 pandemic is affecting everyone, including those with chronic conditions. How is the pandemic impacting those living with hepatitis B, and what support is available to them during these difficult times?
Michaela Jackson: This is certainly a very complicated time. As individuals who might be at higher-risk for a more severe reaction to the coronavirus, people living with hepatitis B have to be especially cautious to prevent contracting COVID-19. Stress, financial burdens, and xenophobia have taken a heavy toll on the hepatitis B community.
Additionally, many preventative services offered by partner community organizations, such as free vaccination and testing services, were put on hold earlier in the year because they required close contact. Fortunately, our partners are finding innovative ways to adapt by developing wonderful virtual events, and designing contactless screening programs. The Hepatitis B Foundation has also put together a resource list for providers and people living with hepatitis B that includes clinical updates as we learn more about how COVID-19 impacts the liver, and links to international support. Those experiencing financial troubles can find ways to access more affordable hepatitis B treatments on our website. The Centers for Disease Control and Prevention (CDC) also offers great tips and resources for coping with the stress of the pandemic.
Antidote: The Hepatitis B Foundation recently launched B the Voice Story Bank, an initiative to encourage people living with hepatitis B to share their stories. What’s the benefit of speaking out about experiences with hepatitis B?
Michaela Jackson: B the Voice is an expansion of our national storyteller campaign, which is called #justB. Through our patient helpline, where we answer common hepatitis B questions and concerns, and our social media platforms, we realized that many others internationally would benefit from having a safe space to share their stories. Unfortunately, many people living with hepatitis B face stigma and discrimination both socially and institutionally, which can make it difficult for them to feel like a part of their own communities. Connecting with people living with hepatitis B and encouraging them to share their stories is a great way to empower them, and helps others feel more comfortable with their own diagnosis as well!
Documenting the patient experience is also essential to developing future treatments and a cure for hepatitis B. Researchers and drug developers often do not have the opportunity to hear directly from the community about how a disease impacts the daily lives of those living with it. Our B the Voice and #justB storytellers offer a unique perspective about what it’s like to live with a chronic illness, or how it can impact a person physically and socially. These perspectives can add meaningful insight for researchers and drug developers to consider as they continue to work towards a cure.
Antidote: Why is research on hepatitis B and other liver disease so critical?
Michaela Jackson: Nearly 300 million people around the world are living with chronic hepatitis B, yet most do not know they are infected due to its lack of symptoms, limited implementation of screening practices and a general lack of awareness about the disease. Globally, the virus is responsible for up to 60% of all primary liver cancer cases, and for 66% of all viral hepatitis deaths. Apart from the physical impact, hepatitis B also significantly impacts a person’s quality of life. In some countries, employers can legally discriminate against people living with hepatitis B, despite their work posing no risk to others. Researching hepatitis B is critical to decreasing mortality due to the hepatitis B virus, preventing liver cancer, reducing health disparities associated with hepatitis B, and increasing health equity around the world.
Antidote: One issue we see with regard to hepatitis B and other liver diseases is that many times, studies aren’t taking the geographic disparities of the patient populations into account. What needs to change to ensure that research is available to those who need it most?
Michaela Jackson: Lack of funding and interest are the largest barriers to ensuring equitable access to hepatitis B research opportunities. Many countries have not invested enough funding, if any, into hepatitis B research that could benefit its citizens. We need individuals to become advocates for themselves and to demand the resources needed to advance hepatitis B research! The voice of advocates is one of the most powerful tools of change and provides motivation for the prioritization and elimination of hepatitis B.
There is also difficulty engaging patients of certain demographics due to a lack of information, or misinformation about clinical trials or other research opportunities. This is something that the Hepatitis B Foundation and other organizations are actively working on improving through increased education and awareness campaigns.
Antidote: What are you most excited about in hepatitis B and other liver research today?
Michaela Jackson: In 2020 there have been several new breakthroughs in hepatitis B research that have helped researchers develop a better understanding of the virus and how it works. This is exciting because improved knowledge can lead to more effective treatments and a potential cure. Another exciting breakthrough was the approval of a new treatment for hepatitis D in Europe! Being infected with both hepatitis B and D significantly increases a person’s risk for cirrhosis and liver damage. Current treatments for hepatitis D are very limited and have severe side effects, so it is great to have better options!