HepBcommunity.org is a global peer-led, volunteer-driven forum to support to those living with and affected by hepatitis B. The forum is dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field, who provide trustworthy and accurate advice.
One of the Verified Science Experts on HepBcommunity.org is Dr Thomas Tu, the forum’s founder, a Senior Research Fellow at Sydney University and a lead researcher on hepatitis B at the Westmead Institute for Medical Research. Thomas is also the current President of the Australian Centre for Hepatitis Virology and a Board Director of Hepatitis Australia and has recently publicly acknowledged his own hepatitis B status.
Thomas Tu has generously shared some of his thoughts on HepBcommunity.org.
What lead you to founding HepBcommunity.org?
I was first diagnosed at 14: it was emotionally upsetting, but at the same time I didn’t know what it meant. I wasn’t provided with much information, I think I was told to get regular blood tests, but I wasn’t reminded or followed up on (probably because I was in a low-risk immune tolerant phase).
After that initial shock, I felt alone. There wasn’t really a time or place for me to talk about it. There weren’t any readily accessible support groups for me. Even if there were, I’d probably be too socially awkward to join them in person.
In Australia, less than a quarter of people who are diagnosed with Hep B are not properly monitored. I think much of it is due to this lack of support. If I try to find out more about hep B I’m met with millions of pages on Google. Which ones are trustworthy, which ones are crap? It’s really difficult to know as an outsider with no knowledge. I might find some good information, but I’m more likely to stumble on unproven remedies that do nothing or even worse wreck my liver. I might ignore them altogether because it’s all too hard and never know about any new treatments or cures that might save my life.
With no guide or support, people can so easily get lost after their diagnosis. I saw that there was a need to connect people in this vulnerable state to a supportive, safe, and understanding community. So I just started one up.
How have you seen HepBcommunity.org utilised by people living with hepatitis B?
One of the most common things people say when introducing themselves is that this is the first time that they have been able to talk freely about their status. The stigma and discrimination against those with hepatitis B is so common all over the world, and so that silence and self-censorship is similarly widespread. Overcoming these attitudes in society is noble goal, but a huge challenge that could take generations to happen.
We’re here more as a stop-gap measure, helping those with here and now to be able to anonymously connect with others and get the support they need from people who have experienced the same struggles themselves.
People have also used our forum to get clarification on their lab results. Many people feel like their health care providers do not spend the time with them or explain results in a way that is understandable to them. The forum is set up so that people can ask specific questions and get answers from some of the world’s leading hepatologists and scientific experts in the field.
What has been your greatest learning since starting HepBcommunity.org?
Every day on this forum provides an opportunity to practice empathy and insights into the impacts of my daily work. As someone who has made their entire life about hep B and goal-oriented research, it is way too easy to become fixated on an abstract end (a grant, a paper, or getting through presentation). It puts things in perspective when people are trusting you with their stories and struggles. You feel obligated to honour this trust placed in you with an open heart and trying to understand where people are coming from. It also really aligns my everyday thinking when those impacts are in full-view; I am constantly adjusting my research to something that will help people.
The forum has also shown me that so many people with hep B are going through the same struggles no matter where they are. The same issues of loneliness, lack of support, anxiety about results keep being raised. It shows me that these are key issues that need to be addressed in addition to the medical outcomes. It shows me that I am not alone in these feelings.
How can the BBV and Sexual Health workforce support HepBcommunity.org?
It would really help the forum if workers from all areas can spread the word about this forum (e.g. social media), or provide a platform for us to present our case for it. For example, I am extremely grateful to ASHM for featuring us in this eNews bulletin.
The sector can also help the forum by joining in the conversations. The more perspectives we have, the easier it is to support people. We have a handful of world-leading, passionate experts volunteering their time and knowledge, but as we grow we will need more support to help educate, answer questions, and moderate discussions.
Finally, you can help by just listening. Many issues that affect people with hep B may not be obvious until you hear someone’s story. Understand what people are going through and incorporate this into your daily work of fighting the impacts of Hep B.
One of our immediate goals now is to spread the awareness of our community and help more people during that really vulnerable time people have just been diagnosed and they’re seeking more information, advice, and experience they can trust. And nothing garners trust more than people you know have been through the same thing as you and walked in your shoes.