04 Oct 2019
Dr Thomas Tu’s speech from the International HBV Meeting 2019
250 million people worldwide have chronic hepatitis B infections and 900,000 people die – every year.
Every hepatitis B scientist has heard these statistics a million times.
But taking off my scientist hat, what does it all mean? What are 300 million people going through each day? I’m going to talk you through it – from my experience.
The worry
Every day I have to listen to these stats. And even through the distance of being a scientist, it grinds away at me. It’s a reminder, each day, of what my fate could be.
Each day, I find myself wondering – what is that niggling ache in my side? Every morning, I check the yellowing of my eyes.
I am lucky because of Medicare and the PBS (Pharmaceutical Benefits Scheme). I don’t have to choose between treatment for a relatively asymptomatic disease and feeding my family.
For others, it’s an easy but stressful decision to pick day-to-day survival at the expense of a 1 in 4 chance of dying from liver cancer or cirrhosis decades later.
But the worry for others pervades my life too.
I don’t know how I came to have hepatitis B, but the way the virus works I was most likely exposed as a child. Knowing this is the case, is stressful and causes feelings of guilt among my immediate family.
I also worry about how close I should get to people.
The representation
Hepatitis B has been framed as a migrant disease, even though it has been around for much longer than migration. I have a responsibility to not reinforce this stereotype.
Although I was born in Australia, I am different to what I see in Australian culture: on TV, in movies, who teaches me, who’s in power, who is representing me in parliament.
Whether I like it or not – and whether it is accurate or not – I represent a community that has in the past been marginalised, and in some cases, still is. My parents were part of the first Asian migration wave since the White Australia Policy. The hepatitis B infection is part of a tapestry of issues that mark and single me out – and it affects how I interact with people in life.
Meeting Miriam
Early on in my career, I went to a party and met a girl. She asked me what I was working on as a research scientist and I answered, hepatitis B. I said it was prevalent in my community, my family. She asked me directly – do you have hepatitis B?
At this point, I have to think and make a judgement about how this person is going to react. My parents came from Vietnam during the war and always have told me to not make waves, keep my head down, and work hard. No politics, no personal incriminating facts to strangers. So what are the consequences of my response?
Is she going to respect the honesty?
Is she going to refuse to go out on a date with me?
Is it going to reinforce the view of “dirty migrants coming to our country taking our healthcare”?
Will this somehow be notified to authorities and my family be thrown out of the country?
I chose honesty. I told her the truth. And we’ve just celebrated our four-year wedding anniversary.
The fire
Fire can be scary and dangerous, until you learn to control it. And then it becomes useful.
Knowing what is happening to you is empowering.
For people with an infection, I would recommend getting to know as much as you can about what is happening, rather than despairing.
Even small steps help. If attending this forum is the first step or a continuing step in your journey, I would like to say, well done. I congratulate you.
For me, learning about hepatitis B lit the fire of knowledge, against the dark unknown.
The fire of passion for my work
I found out that I can do something. I have now converted this as fuel for my life’s passion. It has set off a feed-forward loop: I have hepatitis B; so I found out more about it; and now I want to do something about it; and that makes me want to know more about it.
Knowing what it feels like to have hepatitis B makes me want to prevent others from feeling its effects. The long days, the ups and downs of life as research scientist, are made easier by knowing my work could lead to something worthwhile that might make someone’s burdens a little lighter.
The take-home messages
For scientists, I encourage you to get to know someone who has hepatitis B.
It can really inform your work and make you concentrate on the stuff that will make a difference (which is what we’re all here to do). It can also help knowing that what you do is really important.
For people who are affected by hepatitis B (whether you are infected or are close to someone is), know that there is a highly-trained platoon behind you, working on overcoming the effects of this disease.
Not everyone has the same story as me, but everyone in this community are highly passionate people who work tirelessly and sacrifice their free time to learn everything they can about this disease and enact ways to treat it.
Be your own advocate. The resources are out there for anyone to become more informed and to do something about it. The trope of us scientists coming in to save the helpless poor plebs is bollocks. This is how you make movies, not enact long-term changes.
You as people who have been affected by hepatitis B have the power to influence public discussion, political discourse, and our culture in a way that we as a small band of scientists cannot. We scientists are the best at advising: “if you do x, y occurs”. You, the stakeholders, are best at advocating: “DO X!” Together, we need to pledge to protect each other and as one build a society better than the one we entered.