At 14, Thomas Tu had plans to become either a doctor or a comedian, when a routine blood test revealed something that would change the trajectory of his entire life.
He was diagnosed with Hepatitis B. Now, 20 years later, Thomas is a medical researcher at The Westmead Institute for Medical Research – and spends his days trying to find a cure for the very disease that he lives with.
Hepatitis B is a viral infection, primarily affecting the liver. However, 90 per cent of people who are infected don’t even know they have it, and won’t get diagnosed until it’s too late.
“For the most part, Hepatitis B is asymptomatic,” Thomas said.
“Until [people are] 40, 50, 60 years old, and suddenly… they have a pain in their side. They go to the doctor and they get diagnosed when it’s way too late, when their liver is failing, when they have liver cancer.
“It’s a really big problem.”
Hepatitis B affects 300 million people worldwide and kills almost 900,000 annually from liver failure. Although a vaccine is included in the national childhood immunisation program, Hep B itself is currently incurable. However, if caught early, patients can live normal lives – by taking one tablet a day. It’s not an ideal solution, but it’s the best option that’s currently available.
“We’ll manage, using suppressive drugs, but that doesn’t mean the virus is completely gone. As soon as you stop taking the medication, the virus will jump back. Basically that person is on medication for the rest of their lives,” Thomas said.
Thomas’ family hailed from Vietnam, a country with a high prevalence of Hepatitis B. and, as a result, he was subjected to a routine blood test at 14 years old – which revealed his positive result.
“When I was diagnosed it was a shock and really emotionally upsetting,” he said.
“I didn’t really know what it meant. I wasn’t provided with much information. I was told to get regular blood tests but wasn’t reminded or followed up on,.
The lack of information, combined with societal stigma that is associated with Hepatitis B transmission, meant that Thomas kept his diagnosis to himself for several years.
“We didn’t want to raise it as something that set us apart from a society that had accepted my family as refugees,” he said.
“We didn’t want to raise it as something that set us apart from a society that had accepted my family as refugees,” – Dr Thomas Tu
It wasn’t until Thomas was in university, when he found a passion for medical research. His university, the University of Adelaide, had one of the few active Hepatitis B research labs in Australia. and he knew that was where he belonged.
“From second year on, I was focussed on getting into that lab to make a difference,” he said.
“I saw that I had the potential to change things.”
After starting work in the lab, Thomas felt like he had found his purpose – not just for his own life, but for the lives of others just like him.
“[My diagnosis] motivated me and guided my research,” he said.
“There may be family, people I know, depending on these results for drugs and therapies.
“People’s lives are in your hands.”
“People’s lives are in your hands,” – Dr Thomas Tu
Astonishingly, Thomas’ support for the Hepatitis B community doesn’t stop there. He has created Hep B Community – a world-first online support forum for Hepatitis B patients and families, to help fight the continued stigma and misinformation in the community.
“If I Google Hepatitis B, I get millions of pages, half of them are people trying to sell you stuff,” Thomas laughed.
Hep B Community is trying to fight that – with science.
“What we do is include medical experts, clinicians, scientists and advocates. When [people] are getting advice, it comes from an accurate and trustworthy source,” Thomas said.
Now, for the million-dollar question, is a cure for Hepatitis B on the horizon? According to Thomas, they’ve never been closer. But there’s one main obstacle: money.
“Around the world, we’ve got 50 or 60 ways of attacking the virus now. But medical research is severely underfunded,” he said.
“We’ve seen that [research] can happen so quickly if we make it important. We’ve made COVID important to us.
“Look at the speed of medical research that’s been able to find a vaccine, less than two years [after] we found out what COVID was.
“It’s amazing that we can do such things, if we make it important.”
“It’s amazing that we can do such things, if we make it important,” – Dr Thomas Tu
Listen to Dr Thomas Tu’s full story on Episode 2 of Finding Hope with Georgia Free in the player above.