Sydney's Hep B hotspot reveals cancer secret

19 Sep 2012, 6:46 pm   -   Source: Christine Heard, SBS
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Liver cancer rates are set to soar in the next decade, and those most at risk are migrants living in Sydney's southwestern suburbs - a hot spot for Hepatitis B.

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Liver cancer rates are set to soar in the next decade, and those most at risk are migrants living in Sydney's southwestern suburbs - a hot spot for Hepatitis B.

By Christine Heard.

I meet Oliver at the CanRevive office in Sydney's Chinatown.

CanRevive is a service set up for Chinese-speaking cancer sufferers and the staff there are just gorgeous.

But behind their warm welcomes and wonderful enthusiasm is many years of sadness.

They've all either had cancer, or watched a loved one die from it.

It was CanRevive that helped Oliver get through his cancer batte. And today you'd never guess that this middle-aged, well dressed, softly spoken, fit-looking man has had a liver transplant.

When I sit down with Oliver he tells me that he watched his own father die of cirrhosis of the liver when he was just ten years old.

Even though his father knew his condition was brought on by Hepatitis B, he didn't have his children checked for this disease. 

But when Oliver fell ill in his late 30s, he remembers his father's suffering and asked his GP for a Hep B blood test.  It came back positive.

"Emotionally I felt really sad, you know," Oliver tells me. "I thought maybe I'd become like my father."

Oliver kept his Hep B status a secret.

Being a carrier of this infectious disease, spread through blood to blood contact, was not something he wanted his community to know about.

But he did start seeing a liver specialist, and that decision saved his life. 

Eight years into his regular six-monthly visits the specialist detected small cancers on Oliver's liver. 

Because they were still small, Oliver was eligible for a liver transplant and seven years on from that operation, Oliver is grateful to be alive.

"Ask your doctor for a blood test," he says to anyone of Southeast Asian origin. 

"No, not just a blood test, a Hep B blood test."

But sadly, Oliver's survival story is rare.

Liver cancer is a disease with a very high mortality rate, with 90 percent of sufferers dying within five years of diagnosis.

And because Hepatitis B, when contracted while very young, has no symptoms, many carriers are oblivious to their status until the virus morphs into cirrohsis of the liver or cancer.

And this is where southwestern Sydney comes in.


The region is a Hepatitis B hotspot. It has the highest concentration of Hep B carriers in Australia, due to its large migrant population from China, Vietnam and other southeast Asian nations. 

In these countries, up to 10 percent of the population can have Hepatits B - it's endemic - but even though it's so common, very few people know they have it. 

When Hep B carriers emigrate to Australia their disease comes with them and they unknowingly pass the disease on to their children through childbirth, or in early childhood as their kids mingle with Hep B positive family members.

But here's the interesting thing: Australians born here get Hep B too, but mostly in adolecence or early adulthood, through unprotected sex or sharing needles. 

If you get Hep B at this age, your body recognises it's a virus, you know it's there because you get symptoms, and your immune system successfully fights it. 

If you get Hep B as an infant or young child, the body ignores it for decades until you suddenly start feeling sick.

And with only three percent of Hep B positive Australians getting treatment, it's no surprise that liver cancer is the most rapidly increasing cancer in the country.

Enter the New South Wales Cancer Council.

"The Cancer Council's not just interested in those diseases that affect native-born Australians. We recognise that cancer problems and cancer challenges differ across communities and we're prepared to stand up and do something about that," says the Council's CEO Dr Andrew Penman.

In 2008 the Council started the B POSITIVE project - a program to educate GPs in southwestern Sydney about the seriousness of Hep B. 

In turn, GPs ask their patients to join a Hep B register, so that their disease can be monitored, researched and managed by a team of people. 

The Council wanted 2000 Hep B patients to join the register, to prove that it worked and should be rolled out across the country.

But only 275 patients have agreed to go on the register.

Liver cancer to them is a very remote idea," Dr Danform Lim, a GP in Kellyville, tells me.

"A lot of the time patients don't understand that they have to work hand-in-hand with their family doctors" he said.

Dr Lim, despite being a supporter of the B POSITIVE project, has managed to recruit only one patient.

He says he just can't convince others that they'll benefit from allowing specialists to treat them.

"It's their fear of participating in clinical research," he says.

"At the same time, they're not sure why a single disease should be managed or handled by different people.

If they trust me as a clinician, why do they need to see any other specialist? The costs involved is another reason,"

"Now, there are no costs involved, but there's still a fear that if they see more specialists, more case managers, that will mean more out of pocket expenses,"

And there's another concern: privacy.

"A lot of Chinese, Vietnamese, Indonesians do not want to disclose the fact that they have a chronic diseas," he said.

"If you tell them that the Cancer Council might be able to provide someone that speaks your language they have even more fear because that person may know the patient themselves,"

"I do have patients, after finding out they have Hepatitis B, who ask me will the file here be kept confidential?

"I explain to them that all clinicians in Australia abide very strongly to the Privacy Act but that fear - despite we're living in Australia - is still happening."

Dr Penman knows the issues with the B POSITIVE project but says it's making progress.

"We have 275 patients we're following up on a six monthly basis," he said.

"We have trained more than 60 GPs, we have 22 sentinel general practices that are actively enrolling people in the program...the ideal rate of Hepatitis B patients being treated with anti-viral drugs is 15 percent,"

"The average rate across Australia is three percent.  But in southwestern Sydney it's seven per cent so, that gives us some encouragement,"

And here's the good news: If you get to Hepatitis B early and take your medication every day, you can drastically reduce your risk of getting liver cancer by 60 - 70 percent, and your chances of liver failure to zero.

Yet the stigma of Hepatitis B remains, preventing many people from asking their GP for a blood test. 

Either that or the fact that they have no symptoms, so don't even think to ask about Hep B. 

But the message here is clear: you should ask.

If your family comes from southeast Asia, or another Hep B endemic region, ask your GP to get tested.

"I tell my patients that having Hepatitis B is not the end of the day," says Dr Danform Lim,

"As long as they approach it with a positive attitude."

Dr Penman agrees.

"Hep B is a serious disease that can have serious implications as you age, but it's not something you need to fear. It's a disease that can readily be managed these days with drugs that have very little side effects," Dr Penman said.

"So please, know your status. Get tested. And then engage with your doctor in a program of management over your lifetime,"

Oliver did - and it saved his life.

Oliver will be speaking about his experiences at a Cancer Council/CanRevive event on Saturday November 3. 

There will be talks on Hepatitis B and liver cancer in Cantonese and Mandarin.

There will also be free health check-ups. The event will be held at the Wesley Mission Conference Centre, 220 Pitt Street, Sydney from 9:30am - 3:30pm.

To book a place, call Sabrina Mann on 02 9212 7789

For a cancer resource with information on dignosis, prevention and healthy living in many languages, click here.

WATCH THIS SBS REPORT VIA YOUTUBE:

Hepatitis , Christine Heard SBS

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