LiverWELL

Thi reflects on her experiences disclosing and discussing her condition to the various people in her life – including friends, family, and co-workers.

The reaction from her peers has been of positivity, support, and curiosity. She highlights the fact that there is no need for people living with viral hepatitis to disclose if they don’t want to. However, simply talking about it with people you are comfortable around and trust can be very beneficial.

“In the end your feelings towards yourself are more important than other people’s feelings. I am a human being, I am not hepatitis B,” she says.

Noon Juba and Akuot Tebir are graduate volunteers doing research into the awareness of viral hepatitis in Sudan and in Australia's Sudanese community.

Their fascinating study probes the attitudes and perceptions and if those approaches have carried over into the growing Sudanese community in Australia.

Both Noon and Akout believe breaking the barrier to diagnosis and treatment lies in raising awareness.

"Many people don't know it’s a public health issue, so we need to teach why it happens, how it happens and what you can do about it," says Akout.

"Many won't seek help until it affects their functioning in everyday life - they don't know it is as serious or as prevalent as it is..." adds Noon.

The researchers have suggestions about how best to get the message to the Sudanese community in Australia.

Chris Carter is the CEO of North West Melbourne Primary Health Network (NWMPHN) and a Hep Hero.

“Primary Health Networks can show leadership around advocacy, ensuring the message around blood-borne diseases, STIs and hepatitis gets forward in the public domain at the federal, state and community level,” he explains.

“The challenge is trying to get viral hepatitis front and centre and PHNs have a couple of roles; analysis of what is happening in the catchment and filling the gaps… we’re both a planner and a funder,” he says but it is a complicated problem to tackle.

“Stigma is a huge problem in terms of viral hepatitis and it is linked to so many other domains of human behaviour. Many people in our catchment are from cultural and linguistically diverse backgrounds, so often there are cultural and linguistic barriers: overlay that with GPs who may not be confident to talk about viral hepatitis because of their own belief system, (all this) makes it tricky for people to raise the issue and tackle the virus,” he says.

Chris talks about further steps that need to be taken if we are to achieve ambitious 2030 state goals for the total elimination of viral hepatitis. These include the need for more engagement from federal and state government in the prevention space.

Finally, he discusses the impact of recent awareness campaigns such as ‘Love Your Liver’ funded by NWMPHN and developed by Hepatitis Victoria.

Manuela Urdiste is one of the key people behind the creation of Little Hep B Hero- a family resource about hepatitis. She is part of the Hepatitis Victoria's Community Advisory group which guided the project through conception to completion.

"As a mum of two kids, and also living with chronic hepatitis B it was a good chance for me to express my thoughts, my feelings and my ideas to this advisory group, it was a chance for me to be part of this team... Trying to explain to my kids aged 5 and 8 was quite difficult, telling them what the liver is... but step by step you make them aware."

Jennifer MacLachlan is an epidemiologist at the Doherty Institute for Infection and Immunity where she collects and analyses data concerning viral hepatitis in Australia.

Her team has done ground-breaking work in the National Mapping Projects for hepatitis B and C, attracting widespread attention and giving health advocates important evidence to help fight viral hepatitis.

In this short podcast, Jennifer discusses what ‘bigger picture’ data reveals about on-the-ground changes, and what Australia urgently needs to do to have a realistic chance of achieving the 2030 elimination targets.

"We are making gradual progress, but it is not as rapid as it needs to be," she says.

"Treatment uptake for hepatitis B is only increasing 1% per year but we need it to double to reach the National Strategy target.

"We need to change every element of the healthcare system in Australia to eliminate hepatitis..." Jennifer says.

Priscilla Hiromi Correa is a Brazilian dietitian with a special interest in the liver and people living with liver disease. Mark Pearce, Hepatitis Victoria's Communications Manager, spoke with her on a recent visit to our offices.

She recommends against 'fad' diets and is in favour of eating based on Australia's dietary recommendations, for optimum liver and general overall health.

"Nutrition is so important that through a better diet a patient might even be removed from the transplant waiting list," she says.

All Priscilla's recommendations come with a caveat for listeners; consult with your health practitioner about your personal circumstances before following any advice.

The social stigma around viral hepatitis is deadly, contributing to up to 6 deaths a week in Victoria alone, a greater burden than the state road toll.

On 17 March Hepatitis Victoria CEO Melanie Eagle was invited into the JoyFM studio to talk about the launch of #StigmaStops, a year-long campaign to raise awareness and help tackle stigma launched on Zero Discrimination Day earlier this month.

Meg Perrier, Hepatitis B Outreach Project Officer is running a joint project with Cohealth and the Wingate Avenue Community Centre in Ascot Vale, to raise awareness about hepatitis B and get people at risk treated.

"...For those born overseas, more often than not they were born in countries with high endemic countries of hepatitis B," she says.

The project at Wingate Avenue has introduced an education program about the disease that has led to the testing of 80 community members, more than Meg and her team had anticipated, and a very welcome outcome.

"One of the biggest challenges was going through the process of developing the education and making sure the education was well received," she said.

#StigmaStops Stories is a monthly series from Hepatitis Victoria were we talk with people living with hepatitis about their experiences facing stigma.

Allan Dumbleton is a HEP Hero who was recently cured of hep C. This is his story.

HEP Hero Allan Dumbleton talks about his experience getting cured of hepatitis C.

It took three treatments, two with the Direct Acting Anti Virals, but finally Allan was cured.

"When they told me my viral load was negative- that day will remain with me forever, a great weight was lifted," he says.

Allan also talks about the stigma he experienced and says what he wished he should have done to combat it.

A must listen for anyone who cares about helping people with viral hepatitis, or tackling prejudice and stigma.