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Media Release: Hepatitis NSW – 30 Years of Support and Service to the Viral Hep Community

Media Release: Hepatitis NSW – 30 Years of Support and Service to the Viral Hep Community

30 Years of Support and Service to the Viral Hep CommunityHepatitis NSW turned 30 on November 21, 2021. To celebrate our inception, growth, and three decades of service and support to communities affected by viral hepatitis, an event was held on December 13, giving the community, our members, supporters, volunteers, partners, and staff – past and present – an opportunity to mark the occasion.

Attended by our founding patron, Professor Geoff Farrell of Westmead Hospital, the evening included congratulatory messages from funders, collaborators, and our familial national, state and territory organisations. There were also several open mic sessions for the sharing of memories, of which there were many.

Initially formed and led by Ms Audrey Lamb (OAM), to provide community information and support for people affected by the hepatitis C virus, we have since grown to also include community appropriate efforts around hepatitis B.

While different from each other, both hep B and hep C are viruses that can cause significant liver damage if not given appropriate treatment. Regardless of the changing testing and treatment landscapes for either virus, we have always worked to educate, support, inform, and advocate – to improve health care access and outcomes for people, and reduce stigma.

Both the Australian and NSW governments have committed to the elimination of hepatitis B and hepatitis C by the end of the decade. It is estimated that approximately 79,500 people are living with hep B and over 46,000 people are living with hep C in NSW.

Our achievements over 30 years include the establishment of a wide range of highly regarded services, programs, collaborations, campaigns, and resources – most notably, our Hepatitis Infoline (1800 803 990), Prisons Infoline, and website (hep.org.au) have been the cornerstones of these efforts. Our Speaker Program – which trains people affected by viral hepatitis to talk publicly of the social, emotional, or medical-related aspects of their experience of living with hep C or hep B – has been another cornerstone of our organisation.

“We stand on the shoulders of the giants who rallied the community; gave it a voice, a face; and created this organisation,” said Hepatitis CEO, Mr Steven Drew. “Those giants are the past leaders of the viral hep community.”

“They stood tall and provided us with the means and drive to make viral hepatitis elimination a potential reality. From them, we can not only learn the lessons of the past but also look to the future and apply what worked so we can best achieve our vision of a world free of viral hepatitis. It is a vision that can become reality in less than a generation.”

Much has been achieved in our thirty years, however much remains to be done before viral hepatitis can be regarded as having been eliminated. It is an ultimately achievable goal, even recognised as possible by both Australian and New South Wales governments.

It is our sincere hope that, by our 40th anniversary, both hep B and hep C are no longer significant community health issues.

You can find out more about how to get involved and help us make a positive change for the future here.

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Even a gentle brook can hit rocks – Kin’s hep B story

Even a gentle brook can hit rocks - Kin's hep B story

Kin lives in Sydney with his wife and three children. He has written here about his life lived with hepatitis B, the effect it had on his liver, and how continual monitoring saved him from a potentially devastating health outcome.

You can also read this story in Chinese, as originally written – 我的乙肝故事 >>> CLICK HERE

This story won First Place/ Chinese/ Lived Experience in our 2021 Hep B Chinese and Korean Writing Competition. Congratulations, Kin!

When I was born in China, in the early 1980s, there was no requirement to vaccinate newborns against hepatitis B. My parents learned that I had the hepatitis B virus during a routine test to enrol in a primary school, and later found out that my father also had hepatitis B. Since, in those days, there was no vaccine it meant that many children got hepatitis B from their parents and it remained undetected until they were given a blood test at an older age.

Monitoring my hepatitis B

My parents paid great attention to my health. When they learnt that I had hepatitis B, they immediately consulted with doctors for more information. Over 30 years ago, technology was not as developed as it is now, so information on where to find a good doctor was often passed through word of mouth. We visited many doctors, both traditional Chinese medicine and western medicine. My father blamed himself for not protecting me. During those days of seeking medical care, he would accompany me, taking medication with me together every day. Sometimes he would go by himself to the hospital for treatments, such as an IV drip.

My father had a firm belief that, if we persisted and were optimistic, the hepatitis B test results would turn negative. Yes, indeed there was a time when we both had our surface antigen test return as negative. However, just when we thought we had defeated the virus, it came back again. I was told that I still had hepatitis B during my routine test for entering second school, and my father was later found to still have it too. We were informed by a doctor that this was common among chronic hepatitis B patients. Since there were no drugs to cure us, we needed regular monitoring. That way, if anything out of the ordinary was found, we could then start treatment to reduce any likelihood of damage to our livers. From that point on, my father gave up the thought that our hepatitis B could be cured.

Hepatitis B almost derailed my studies

Over many years, except for the red elevating marks on our lab reports, it seemed to be having no effect on us. Because of this, my father did not pay much attention to the regular monitoring by the doctor. Then, a month before my college entrance examination, they found major changes in my condition. I was told that my status was what they called “big three positive” (HBeAg positive).

This meant, so the doctor told me, that the virus was actively replicating and I had a high viral load. In my day, study was so important that it could truly change one’s fate. Now at such an important time in my life, I felt plagued by this virus and it would be wrong to say that I did not feel devastated. However, my father’s perseverance again gave me great support and encouragement.

He said to me, “Son, you do not need to worry about anything. Concentrate on the exam, follow the doctor’s treatment plan for medication. It’s okay if you’ve done your best”.

I listened to his words, and indeed things seemed to go in the right direction. A check-up before the exam showed that I was back to “small three positive” status (from HBeAg positive to HBeAb positive), which suggested my viral load was lower. I achieved an excellent result in my exam, ranked in the top five in my school, and got into my preferred university.

Despite hepatitis B, my life became like a gentle brook

From there, my life followed a path taken by so many others. After completing my undergraduate and postgraduate degrees, I got into a software technology company and was travelling around China to various companies as an accounting software consultant. It was busy, particularly around the end of each month, and overworking was common. Despite this, I remained aware of my condition and knew I could not afford to ignore it. I never missed my six-monthly check-ups, ate regularly, and got plenty of rest. Everything was going well.

At the end of 2010, I met my current partner who, while settled in Australia, had returned to China to visit relatives. Through “matchmaking”, we got to know each other and soon got married. At the end of 2014, I finished my employment contract with the company in China and decided not to renew it. Instead, I moved to Australia to settle down with my wife.

After the birth of our third child, my employment became stable and I no longer needed to work overtime – our life became easy and comfortable. I had thought my life would be like a brook, trickling slowly into one long river of happiness. However, some unexpected news hit us hard.

Unexpected liver complications

Following a hepatitis B check-up at the end of 2019, the clinic urgently informed me that my AFP level (Alpha-Fetoprotein – for potential tumour markers) was out of the normal range. I also was contacted by a hepatologist from Westmead Hospital, who arranged for me to have an abdominal CT scan. I was puzzled and didn’t know how to react to this news – a check-up half year earlier showed everything was normal. The had told me that my hepatitis B surface antigen had “turned negative” – HBV-DNA not detected. So, I was very shocked to hear of this new development.

I started searching online for information about AFP, as a tumour marker – particularly for chronic hepatitis B patients – high levels could be signs of liver cancer. I felt panicked and had to force myself to calm down, it was such a short time to go from being told the hepatitis B was not detected in my blood to the possibility of having a tumour. I told my wife the news, she was also confused but told me to follow the doctor’s advice.

When the CT scan report came back and showed that everything was normal, my wife was relieved and thought maybe the doctor was making a fuss over a minor issue. After all, there were many reasons to cause the elevation of AFP, not necessarily liver cancer. However, I was still worried.

Was it liver cancer, or not?

From that point, I was scheduled for blood tests every two weeks – one month later the specialist ordered an MRI. My blood tests had continually indicated an ongoing elevation of my AFP levels, even sometimes doubling.

I was restless and became more silent and withdrawn. My wife did not understand, and we even argued over this. She thought that I was totally preoccupied with the matter and was not sharing the responsibility of looking after our kids. After our fight, I came to realise that I should carry on with my life regardless of any potential illness, and that I should take more responsibilities while I could.

Then the MRI report came back and showed a suspected tumour. My wife became worried and felt bad for being harsh on me. However, for me, it was a relief. I comforted my wife by saying it was better that we knew, so we could do something about it. I waited two weeks for the specialist to see me – he was having consultations with other specialists to develop a treatment plan. He told me that they were confident that there were cancer cells in my liver. However, the good news was that it had been found early, the tumour was in an accessible location and could be surgically removed.

Since it was almost Christmas, the operation was scheduled after the new year. Obviously, there were risks for operations. Liver resection is a challenge for surgeons, requiring sophisticated skills and, for patients like me, there was a risk of heavy bleeding. But, after the meeting with my specialist, I was confident in his expertise and skills and became relaxed.

My liver surgery

Although the operation took three more hours longer than expected, it was successful. The extra time was due to the rechecking and re-examining of my liver to make sure the tumour was completely removed.

I would like to express my sincere gratitude to not only the chief surgeon, Dr Yuen, for his precision and care, but also to the team of hepatologists led by Professor Jacob George  at Westmead Hospital. They indeed gave me another life. I stayed in the hospital for observation for five days after the surgery. I was taken good care of by the doctors and nurses during those days. Even though my wife was busy looking after the family, she would still take time every day to see me. When I saw her taking our one-year-old daughter in and out every day, I told myself that I should take care of my health, so that I can look after my family well.

My colleagues came to visit me during my rehabilitative days at home after they learnt about my condition. All this support and care made me feel like Australia is a place full of love and dignity.

Future life plans

Every three months now, I take a blood test and MRI to monitor my liver. I gradually regained my strength and recovered back to how I was before. Life gives me challenges but also offers me blessings. Now for the rest of my life, I will cherish every day, every moment with my family and friends.

Published 8 November, 2021

Kin adds: “I’m glad to have  had this chance to help to bring more awareness of hepatitis B to people. It is indeed an honour and good luck to win the first prize.”

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My Secret Hepatitis B Story

My Secret Hep B Story

Ji-Young is a 36-year-old Sydney woman, currently taking Viread medication for hep B. She’s been on Viread for over five years now and has no issues with her viral load or liver function, and is very healthy. Ji-Young is also a mother to two children who she raised through breastfeeding.

She wrote this story in the hope that her experiences can help others.

You can also read this story in Korean, as originally written – 나의 비밀 이야기 >>> CLICK HERE

This story won First Place/ Korean/ Lived Experience in our 2021 Hep B Chinese and Korean Writing Competition. Congratulations Ji-Young!

My hep B diagnosis took me by surprise

My mother was living with hep B when she was pregnant with me, meaning I acquired the virus at birth. Presumably there was no hep B vaccination for newborns at that time, or my mother was unaware of it.

The first time I heard of the term “hepatitis B” was as a high school student in Korea, when I was in the process of becoming a blood donor.

I had gone to the blood donation centre with all my friends and had my blood taken, but a few days later I received a letter with blood test results that indicated my blood was “unfit” to donate.

When I asked my mother she explained to me, for the first time, that she had acquired hep B when her mother – my grandmother – gave birth to her. So, in the same way I had gotten it from my mother.

From then on, I never tried to donate my blood again. But I also didn’t undergo any special medical assessments or treatments related to my hepatitis either. I spent many years simply forgetting and ignoring the virus.

Coming to Australia… I could no longer ignore my hep B

In 2007, I came to Australia and began the many preparations required to receive permanent residency. Those preparations had finally been completed by 2011, and with all the documents submitted I arrived at one of the final stages – the physical examination.

During the physical exam, I completed many different tests. Then, in the section of a questionnaire where I had to select medical conditions that applied to me, I again encountered the word “hepatitis B”.

Suddenly, I was half-curious and half-worried that this could apply to me, and I informed the person in charge that I thought I might still have hepatitis B. Little did I realise, it would be from this point on that I would begin my hepatitis B treatments in Australia.

I say all this lightly now, but to be honest, I had a very hard time. Following the notification of my hep B status, the immigration office placed further requirements on top of the physical examination, the processes for gaining my permanent residency kept increasing.

After the first physical exam, I was asked to submit a full blood test and an ultrasound result, and to seek a doctor’s opinion about the condition of my liver.

So, I went to St. Vincent’s Hospital to see a Gastroenterology Specialist who took my blood test and ultrasound there. At that time, I was 25, had never drank or smoked, and didn’t have any other medical conditions. My results indicated that my viral load was low and there were no issues with my liver function.

Regular monitoring of my hep B was essential

With my doctor’s opinion that, because of these good results, there was no reason to have a disadvantage in gaining permanent residency, everything was approved – I finally gained permanent residency in Australia! However, the doctor also advised me to take a blood test every six months and an ultrasound every year.

From that point on, following the doctor’s advice, I’ve been having regular blood tests and ultrasounds from a GP, and seeing a specialist at a Liver Clinic for my annual liver check.

Despite this, as time went on, my viral load began gradually increasing. In 2016 it skyrocketed, and it was then that my doctor recommended treatment for the first time – a medication called Viread. Thankfully, Medicare covered all treatment and prevention processes and the medication. I had no reason for any hesitancy as there was no cost for treatment.

After a few months of taking Viread, following another blood test, my viral load had thankfully returned to healthy levels. Even so, my doctor stressed that I must continue to take Viread and still have regular blood tests, as it was not possible to predict when, or how, my viral load could change.

My pregnancies, breastfeeding, and hep B

In 2017, as I had moved where I lived, I instead began attending a Liver Clinic in Liverpool. Through consultations with my doctor there, I learned that taking Viread has no, or very little, effect on pregnancy and childbirth.

So, while continuing to take my medication every day, I became pregnant with my first child. The doctor also urged me to ensure that my child received the hepatitis B immunoglobulin vaccine after birth to prevent them from getting the virus.

I gave birth with no problems, and my child was vaccinated with the help of a midwife. Furthermore, since I gave birth at the same hospital as my Liver Clinic, they kept a close eye on my liver health.

When my child was around nine-months old, a blood test was done to check if they had gained immunity against hepatitis B, and thankfully, they had – they did not have the virus.

Following that experience, I again continued to take the same medication throughout my second pregnancy and birth. Currently we’re in the fourth month of breastfeeding and both of us are well, with no issues.

Even now, I regularly have blood tests and receive counselling at the Liverpool Liver Clinic, and my viral load and liver health both remain in good condition.

Looking forward to my healthy future

Beyond my immediate family and my very close friends, people aren’t aware that I take medication for my hepatitis B. I don’t say anything either. It is true that the disease known as hepatitis B generally isn’t viewed in the most positive light, and since there are many people who aren’t aware of it, I don’t tend to tell people.

Luckily, since I don’t have any issues with my liver health, I haven’t experienced any discrimination or discomfort. However, the task of having to take a pill every day for the rest of my life, and the responsibility of having to pay more attention to my health than others, including avoiding alcohol and smoking, can be daunting.

But this is not much to endure to live a long, healthy life. I think a main reason I have lived my life so far without any issues with my liver has been due to the consultations I have had for over ten years.

I don’t know what kind of system is in place in Korea, but hepatitis B patients in Australia are taken very good care of. For that I believe I’m truly fortunate.

Published 19 October, 2021

Ji-Young adds: “This has been my experience as a person living with hepatitis B. I was at a loose end during the recent COVID lockdown period, so I just used my direct experience to tell my story, and I’m so proud to receive first prize!”

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Media Release: Despite COVID, hepatitis can’t wait this World Hepatitis Day

Understanding hepatitis B - part 1Wednesday, 28 July marks World Hepatitis Day 2021, an important opportunity to give visibility to, and raise awareness of viral hepatitis, as well to drive better outcomes for people affected by viral hepatitis.

This year’s theme is “Hepatitis can’t wait”, conveying the urgency of efforts needed to eliminate hepatitis as a public health threat by 2030. Even in the current COVID-19 crisis, we can’t wait to act on viral hepatitis. Viral hepatitis doesn’t care about other health crises. Left unchecked both hep B and hep C will continue to find new people to infect and continue to damage the livers of those already living with the viruses.

The good news is that recent changes to Medicare means Australians can have access to management, care and treatment of hep B or treatment and cure of hep C from the comfort, privacy and safety of their own home using telehealth. Even testing for hep C can be done at home using a free Dried Blood Spot (DBS) test kit ordered from dbstest.helath.nsw.gov.au

Hepatitis NSW CEO, Mr Steven Drew said, “Advances have been made in Australia and New South Wales on many fronts for both hep B and hep C. While much has been achieved through the combined and concerted efforts of community health organisations, clinicians, health departments, and researchers, we all agree that there is still much to be done to meet elimination targets in this country.”

In NSW, World Hepatitis Day falls within Hepatitis Awareness Week which runs 26-31 July. The week includes a range of local and state-wide activities, events, and initiatives to improve population outcomes for both hep B and hep C.

Mr Drew said, “A key activity this year is the roll out of HEP CURED, a campaign using simple messaging and strong imagery to promote the availability and effectiveness of cures for hepatitis C. The core message of the campaign instils a sense of connection with loved ones, or significant others.”

Three key posters were designed based on research showing the importance of “connection to others” as motivations to seek cure. The posters serve as conversation starters that lead to engagement around hepatitis C testing and treatment.

HEP CURED utilises posters in clinics and services, advertising in shopping centres and washrooms, laneway and regional billboard advertising, railway billboards, and selected bus shelters and street furniture.

Hepatitis NSW is also running a separate social media initiative featuring ten video and display adverts across Facebook, Instagram, YouTube and Google. Each advertisement – be it about hep B, hep C, or liver health – links to relevant pages on the Hepatitis NSW website, providing information and resources on testing and treatment. This initiative aims to support the ongoing push to eliminate viral hepatitis.

Included in the initiative are videos featuring some of our many amazing and inspiring lived experience speakers. These people bravely share their own very personal stories and perspectives on life with hep B or hep C, and what management or cure, respectively, means to them.
Mr Drew said, “These stories are a powerful reminder that while we focus on the disease, at the heart of all we do and what we want to achieve, are real people. People with hopes, dreams, families, friends, and a desire to get the most out of life.

“I encourage people to contact the Hepatitis NSW Infoline on 1800 803 990 for more information about the treatment options available or hepatitis generally. You can also contact us using our online chat function on our website,” said Mr Drew.

For more information, please contact:

Hepatitis NSW
Steven Drew, CEO
sdrew@hep.org.au
0402 518 285

Published 28 July, 2021

General information about hep B and hep C

Tens of thousands of people in NSW are living with viral hepatitis. Both hep B and hep C are viruses that can, without appropriate medical intervention, become life-long chronic conditions, eventually leading to liver cirrhosis, liver cancer and sadly, all too often, death. A significant percentage of people living with hep B or hep C are unaware they have it. Even where people know their status, many thousands experience barriers to access healthcare, treatment, or cure – this must change.

With hepatitis B, while there is currently no cure for this virus, babies born in Australia are vaccinated against it. Any adult who needs to be vaccinated can be. Testing is available, and encouraged, for anyone from an at-risk group. Should a person be found to be living with hep B, regular monitoring of their liver health is strongly recommended, and, if required, treatment can be prescribed to manage their viral load and prevent the onset of liver disease.

For hepatitis C, all Australians over the age of 12 have access to effective and affordable Direct Acting Antiviral (DAA) cures. This year marks the fifth anniversary of DAAs being made widely available in Australia through Medicare. Since 2016, more than 75,000 Australians have been cured of hepatitis C. It is no exaggeration to say that being cured of hep C can improve quality of life – many people who have finished their course of treatment report feeling greater levels of energy and alertness.

Hep C medications have a cure rate of 95 per cent. They can be prescribed by any general practitioner, or authorised nurse practitioners. Cure is usually achieved within 8 or 12 weeks, with minimal or no side-effects.

“These oral pill treatments have offered a revolutionary opportunity,” said Mr Drew. “It is important that people see their health professional to be treated and get their best life back. While hepatitis C initially has almost no symptoms, if left untreated it can ultimately result in significant liver disease.”

Testing for hep C is simple and as easy as getting your GP to do a blood test. Should someone learn they have hep C, they should seriously consider commencing treatment and get cured.

“It is not often we get the chance to eliminate a chronic disease, but we have that opportunity now with hep C,” said Mr Drew. “I encourage anyone who hasn’t yet sought out this medication to explore their treatment options,” adding that Hepatitis NSW could provide information and support to anyone living with, or affected by hepatitis including family and friends of people living with hepatitis C.

 

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Media Release: New website reaches priority hepatitis B communities

Media Release: New website reaches priority hepatitis B communitiesHepatitis NSW has launched a dedicated hepatitis B website for Chinese and Korean communities – hepB.org.au. This new site has been developed to support and inform people from these populations, in New South Wales, who are impacted by hepatitis B. The website will support efforts to eliminate hepatitis B in Australia. Current data shows targets are not being met; achievement of hepatitis B elimination targets is unlikely before 2040 which is ten years later than the agreed target.

Why hepatitis B elimination is important

Hepatitis NSW CEO, Mr Steven Drew, said “Chronic hepatitis B is the most prevalent blood‐borne virus in Australia, and is a significant contributor to liver disease, including cancer.”

Approximately one percent of the Australian population lives with the virus; people born overseas, and Aboriginal and Torres Strait Islander peoples, represent three-quarters of those affected.

Educating migrants has become a priority

An increase in migration of people from endemic populations has seen a rise in the number of individuals living with hepatitis B in Australia. This is despite infant hepatitis B vaccination programs here, and overseas, reducing overall transmission of the virus.

“As such”, said Mr Drew, “the prevalence of hepatitis B within new and existing adult migrants will remain an issue. Targeted efforts and campaigns are required for some time yet. Within New South Wales, and in pockets of Sydney specifically, Korean and Chinese communities bear the bulk of this burden.”

Even though Australia has committed to several national hepatitis B targets – 80% of people diagnosed, 20% on treatment, and a 30% reduction in deaths by 2022 – those targets are not being met. As of 2018, approximately 68% were diagnosed, with only 8.7% receiving treatment – less than one‐third of those estimated to be eligible.

“Unfortunately, deaths attributable to liver cancer have been increasing in Australia faster than deaths caused by any other cancer, with liver cancer now the sixth most common cause of cancer death,” said Mr Drew.

However, with regular testing and, where needed, effective ongoing treatment, it is possible to keep the damage done by hepatitis B at bay and safely managed.

Mr Drew said, “The difficulty is in addressing language barriers, cultural stigmas, and myths and misinformation so that people start regular testing and understand the risks of delaying medical attention.”

There is demand for Korean and Chinese language sections

“Our 2020 web-traffic statistics showed clear demand in the Korean and Chinese language sections of our primary English language site, so we expanded our existing online material to produce a dedicated in-language site.”

“With this new, special website for Korean and Chinese communities, we hope to communicate directly to people seeking advice and information for themselves or loved ones”, said Mr Drew.

hepB.org.au will enable us to provide information covering testing, transmission, prevention and vaccination, treatment, and monitoring – as well as personal stories and specialist articles – to Chinese and Korean people residing in New South Wales.

For more information, please contact:

Hepatitis NSW
Steven Drew, CEO
sdrew@hep.org.au
0402 518 285

Published 28 May, 2021

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Media Release: NSW’s Mandatory Disease Testing Bill ill-conceived and flawed

Media Release: NSW’s Mandatory Disease Testing Bill ill-conceived and flawedSpeaking at a NSW Legislative Committee Inquiry into the Mandatory Disease Testing Bill 2020, on Thursday 11 February, Hepatitis NSW restated our concerns related to this ill-conceived and flawed legislation.

Hepatitis NSW CEO Steven Drew said, “Hepatitis NSW absolutely supports frontline health and emergency services workers. We collaborate with many of them every day through our work. They should not be subjected to unnecessary threats or risk as they go about their job and it is abhorrent that attacks do occur that create health related stress and concern.”

“Frontline workers must be informed and educated in advance, and reassured by experts that, based on science and evidence, the likelihood of the transmission of a blood-borne virus as the result of spitting or skin contact with blood is non-existent,” said Mr Drew. On this basis, the inclusion of saliva within the definition of ‘body fluids’ which can be used to seek a mandatory testing order in the Bill is redundant and raises questions as to the real purpose of this legislation.

“We are part of a concerted effort by the community, government, and health sectors to eliminate both hepatitis B and hepatitis C in New South Wales by 2028,” said Mr Drew. “Efforts to date have resulted in the hard won ongoing decline in prevalence of hepatitis B and hepatitis C. Both viruses now present a numerically small and ever diminishing health risk in NSW.”

“There is an effective cure for hepatitis C and a vaccination for hepatitis B. This means the fear and worry, which this legislation validates, is unwarranted and not justifiable. Instead, rather than entrench stigma and discrimination, we need scientific, evidence-based information and education to reduce stress and anxiety for frontline workers who are at risk of incidents of exposure. This reflects New South Wales world leading approach and response to public health issues.”

This Bill will make it harder to reach the very people we must still reach to make good on elimination.

Since 2000, a comprehensive hepatitis B vaccination program in NSW means an entire generation of young people are not at, and pose no risk of, infection. Additionally, frontline workers should already be vaccinated against hepatitis B to mitigate occupational health and safety risks of blood borne virus transmission.

Furthermore, an effective cure for hepatitis C is universally available through the PBS, including for young people aged 12 and above. That this Bill applies to young people aged 14 years and above is as unjustifiable as it is abhorrent.

“The importance of protecting and promoting the health, well-being, and mental health of staff, employees, workers and indeed the public is something we all agree on. Workplaces have an obligation to do everything possible to protect staff from injury and harm while carrying out their duties. Although the rationale for this Bill is to protect and promote the health and well-being of frontline workers we already, in fact, have the tools to do so.”

The current system already places the health and safety of the worker at the centre of risk assessment and prevention. It prioritises evidence-based assessment, treatment, and care. In the event of an incident, focus should always be placed on access to immediate assessment of risk by a qualified health practitioner, counselling, and support to the person. This support would see the commencement of any recommended aftercare, including post-exposure prophylaxis.

Mr Drew said, “Requiring an alleged assailant to undertake a blood test, potentially without consent and under duress, does not provide peace of mind. It would be an unnecessary and fallible substitute for the immediate clinical assessment of the affected worker by an expert and appropriate care protocols.”

It is important to state clearly and unambiguously that enacting this Bill will disproportionately and adversely impact an already disadvantaged population, notably street present and marginalised people – specifically Aboriginal and Torres Strait Islander people, as well as people who have substance dependence, gender identity, and mental health issues.

“The Bill will effectively offer no increased peace of mind to frontline workers,” said Mr Drew, “but would instead expose predominantly marginalised individuals to unnecessary and invasive blood testing, potentially inflaming violent behaviour and increasing the risk of injury to both the alleged assailant and the frontline worker.”

  • Download our submission>>> CLICK HERE
  • Read other submissions – NSW Parliament site>>> CLICK HERE

For more information, please contact:

Hepatitis NSW
Steven Drew, CEO
sdrew@hep.org.au
0402 518 285

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What you need to know about hep B | part 4

What you need to know about hep B | part 4

This article – part 4 of 8 – was written by Dr Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

Liver cancer | part 1

One of the most serious complications of hepatitis B is the development of liver cancer. All people with chronic hepatitis B infection are potentially at risk of developing liver cancer. Even so, some are at higher risks than others. There are screening protocols for those at high risk, regardless everyone with hepatitis B should be considered for screening.

The primary cause of liver cancer is hepatitis B, not alcohol

High risk hepatitis B groups for increased risk of liver cancer are anyone with cirrhosis, a family history of liver cancer, and older people (men over 40 years and women over 50 years). However, people outside of this group can still develop liver cancers and they require close monitoring. As discussed previously, all people with hepatitis B require lifelong monitoring for both the liver condition and for consideration of liver cancer screening.

There are different types of cancers that can affect the liver. Primary liver cancers are cancers that develop in the liver cells – known as “hepatocytes”. Other types of liver cells such as bile duct cells can also lead to cancer, but this is not directly related to hepatitis B. Cancers from other sites can also spread to the liver so that liver cancers can be secondary to cancers that have started elsewhere. This article will discuss the primary type, which is refered to as liver cancer or hepatocellular cancer.

Liver cancer is one of the most common cancers in the world

Primary liver cancer is one of the most common cancers in the world – ranking fifth – and is the second leading cause of cancer related deaths in the world. It is one of the cancers that is continuing to increase in number. Apart from hepatitis B, there are other conditions that can increase the chance of developing liver cancer. This includes cirrhosis from any cause. This could include alcohol, fatty liver, hepatitis C, autoimmune liver disease, iron storage disease as well as metabolic conditions. Cirrhosis is a condition of severe liver scarring that covers a wide spectrum of symptoms, and so some patients may not realise that they have cirrhosis until they are very sick. It can sometimes be picked up early by blood tests as well as some imaging studies. Anyone with ongoing abnormal liver tests should ask their doctor about how their liver is doing.

It’s not easy to find liver cancer – multiple tests are needed

Screening for liver cancer is recommended in groups of patients at increased risk. This is done using a liver ultrasound and, in some cases, a tumour marker blood test – an alpha fetoprotein (AFP) – every six months. Since liver inflammation, cirrhosis and non-related liver diseases such as pregnancy and testicular cancer can cause an elevated AFP, there is ongoing research to try and find an accurate and simple blood test to identify liver cancer early.

Liver ultrasound is simple and safe as there is no radiation exposure. Preparation for the procedure requires fasting. As with all tests, there are limitations. It relies on the skills of the sonographer, the patient’s body build/physique and fasting state. Patients are asked to fast because the bowel can get in the way and overlying gas can limit the views of the liver. In very large patients with fatty liver, the fat in the liver can make visualization difficult so that small liver lesions may not be found. Other liver conditions such as liver cirrhosis and the presence of many cysts can also interfere with getting good visualisation.

Liver cancer is more dangerous without symptoms

In a liver ultrasound, doctors are looking to find new, very small liver spots – often less than 1 cm across. Screening with an ultrasound is usually just a lead-in to other tests that will clarify the nature of any new liver spot. Not all new lesions are cancer, but all new liver lesions in people with underlying risk factor for liver cancer need further close scrutiny.

Next: In Part 5, to be published next week, Dr Lee will write more about liver cancer.

Published 4 February, 2021

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Hepatitis NSW Submission: Mandatory Disease Testing Bill 2020

Mandatory Disease Testing a futile and stigmatising exerciseHepatitis NSW has provided a submission on the Mandatory Disease Testing Bill 2020 currently being considered by the State Government, and will shortly be attending a committee hearing at NSW Parliament House. Hepatitis NSW has opposed mandatory disease testing since it was first considered following recommendations arising in the 2017 NSW Legislative Assembly Committee on Law and Safety Report. Our position remains unchanged.

Download our submission>>> CLICK HERE

The proposed bill won’t address risk to frontline workers

We strongly believe that the wellbeing and safety of frontline workers in NSW is vitally important. In terms of wellbeing and safety, we are referring not just to the physical but also to mental and emotional wellbeing. Our frontline workers deserve the community’s respect and should not be subject to acts of intimidation, threats or violence in any form. They must be protected as much as is reasonably possible in a high-level occupational risk environment.

In providing that protection, it is essential that the strategies designed and used are scientifically informed, evidence-based and effective in meeting the aim; that they are fit for purpose. Where the issue being addressed is a health issue, the response must be health based, not based on criminalising affected people.

A health informed and based response provides a holistic, wraparound approach that draws on appropriate health promotion, medical support, interventions and care to the primarily affected person. Force and criminalisation against a third party is punitive and does not provide sanctuary for a victim.

This Bill is a blunt instrument that is wholly incapable of achieving anything other than a perpetuation of fear, loathing, discrimination and privileging that is inconsistent with the inclusive, fair and responsible society and behaviour we would all desire. It will not address the stress and concerns of frontline workers around the exceedingly low risk of infection. Indeed, greater results will be achieved through supporting them with accurate information about risks, addressing their concerns, and providing professional wellbeing, support and counselling.

We do not support mandatory testing

Mandatory testing is not in line with the Australian National HIV, Hepatitis B or Hepatitis C Testing Policies, or supported by global health bodies. The key principles guiding blood borne virus (BBV) testing in Australia are that testing is conducted ethically, is voluntary and performed with the informed consent of the person being tested.

Mandatory testing does not meet these principles. Mandatory testing laws are not supported by global health bodies such as UNAIDS and the World Health Organization on the basis that it breaches human rights, compromises public health initiatives and other efforts to eliminate HIV and other BBV transmission.

  • Download our submission>>> CLICK HERE
  • Read other submissions – NSW Parliament site>>> CLICK HERE

For more information, please contact:

Hepatitis NSW
Steven Drew, CEO
sdrew@hep.org.au
0402 518 285

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What you need to know about hep B | part 3

What you need to know about hep B | part 3

This article – part 3 of 8 – was written by Dr Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

Hepatitis B treatment under other circumstances

There are special groups of patients for whom treatment is needed outside of the standard setting. This includes patients who need to undergo significant immune suppressive therapy; women who are pregnant and at risk of transmitting the virus to their unborn baby; and patients with co-infections such as HIV, hepatitis C or other significant chronic health conditions that place them at increased risk of complications. Family history of complications of liver disease such as liver cirrhosis and cancer are also considered as risk factors.

Our immune system causes liver scarring

The hepatitis B virus itself does not cause direct damage to the liver. Such damage is due to our immune systems response to the virus which causes the liver to become inflamed. Over time, this inflammation can lead to scarring. However, in certain clinical situations, when a person’s immune system is altered by medical treatment, hepatitis B can become “reactivated”. For instance, someone who is having cancer chemotherapy will have medicines to suppress their immune system. When the treatment is finished, their immune system becomes active again and this activity can lead to a flare of hepatitis. This is referred to as immune reactivation. Reactivation can be mild, and seen on routine bloods; but, in rare cases, this can be so severe that it can lead to liver failure. Having prophylaxis with antiviral therapy for hepatitis B can save the patient’s life.

There are non-cancer medicines that are also used to suppress the immune system for a variety of immune related disorders. These can also cause immune reactivation. Hepatitis B treatment is therefore given whilst on immunosuppressive therapy, and after stopping, for about six months. The doctor will test for hepatitis B and will advise what may be needed.

Hep B test for all pregnant women

Pregnant women are the other group of hepatitis B affected people where hep B treatment may be considered as a preventative measure. All pregnant women are screened for hepatitis B. In some cases, it may be the first time they find out they are hepatitis B positive. It is important that you receive lots of counselling about this condition and be assessed to determine whether you should have treatment or not. If you do not need treatment, a special blood test to measure the amount of virus in your blood will be done during pregnancy. This is to see whether there is an increased risk of transmitting the virus to the baby at birth.

Hep B vaccine for all newborn babies

In Australia, all babies (irrespective of their mother’s hepatitis B status) are given a hepatitis B vaccine at birth. For babies born to hep B positive mothers, an additional injection of an immune globulin is also given. Despite this, there is still a risk of the baby acquiring hepatitis B if there is a lot of the virus in the mother’s blood at birth. Hence, viral load during her pregnancy helps to determine whether additional medicines can be given to reduce this further. Tenofovir is the usual drug offered and is given around week 28 of pregnancy and stopped at some time after delivery. An obstetrician will work closely with the liver specialist in making sure the mother and her unborn baby are protected.

In addition to having treatment with regular monitoring, a mum to be needs to ensure that she takes good care of her health. General wellbeing including regular exercise, a well-balanced diet with high fibre, plenty of vegetables and protein is important. Avoiding excessive weight gain will also ensure other health benefits.

Next: In Part 4, to be published next week, Dr Lee will write about liver cancer.

Published 28 January, 2021

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What you need to know about hep B | part 2

What you need to know about hep B | part 2

This article – part 2 of 8 – was written by Dr. Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

Diagnosing And Treating Hepatitis B

Once a diagnosis of chronic hepatitis B is confirmed through blood tests, an assessment is made. The assessment will be based on health history (including family history of liver cancer), a physical examination, further blood tests, ultrasound or CT and special imaging called Fibroscan. These are needed to determine whether treatment for hepatitis B is required, or if someone only needs to be monitored for now.

A careful assessment is needed to ensure that someone will benefit from hepatitis B treatment. There are two main reasons for this. Firstly, a person can have a chronic infection without it progressing to complications such as cirrhosis or liver cancer. Secondly, hepatitis B treatment (unlike hep C treatment) is not curative and is, in most cases, long term or lifelong once commenced.

What Is Cirrhosis And Can It Be Treated?

When the liver cells are damaged they become inflamed or swollen – this is called liver fibrosis. Over time this can build up and lead to cirrhosis of the liver – which is actual scar tissue in the liver. The scar tissue reduces blood flow through the liver. The liver then can’t do its work as well as it should.

All patients with cirrhosis should have treatment. Diagnosis of cirrhosis can be simple, but in some cases may require a combination of blood test, scans and a fibroscan that measure liver scarring. A fibroscan is a special type of non-invasive scan, like an ultrasound.

In people without cirrhosis, high liver function (ALT) readings associated with high virus count are indications for hepatitis B treatment. Even where an ALT reads normal, indicating no need for treatment, it can still go up without the person being aware. Hence, the need for regular check-ups – usually every six to twelve months.

Other considerations for treatment are older age, and a family history of liver cancer.

How To Treat Hepatitis?

Treatment for hepatitis B, if required, is very simple. It is one pill per day. There are one of two medicines that are used – entecavir or tenofovir. The medication is best taken at the same time each day (entecavir away from food; tenofovir is not affected by eating). Neither drug is associated with significant side effects but, as with all medicines, side effects are possible.

Tenofovir has been associated with renal issues and a doctor will need to regularly monitor kidney function. Both medicines need to be reduced to a lower dose if the person has reduced kidney function and this needs to be discussed with the doctor.

Once treatment is underway, it is really important that the medicines are taken regularly as resistance can occur, and there is also a risk of worsening liver disease, such as a flare, after stopping the medicine. These tablets are generally prescribed by specialists, but some GPs can also prescribe these medicines.

Regular monitoring whilst on treatment, usually six-monthly, is also critical with blood tests and ultrasound. The medicine is taken to control the amount of hepatitis B virus in the blood, which then leads to decrease in liver damage.

These hep B treatments have been available for decades and have been shown to be lifesaving, preventing and, potentially, reversing liver damage.

Can Hepatitis B Be Cured?

There are currently no cures for hepatitis B.

Liver cancer risks are lowered with treatment, but there is still a need for ongoing screening as the risks are not completely averted. The goals of treatment are initially to improve the liver tests (to get an ALT normalisation) and to stop the virus from replicating . In the long term, some patients have what is referred to as a “functional cure”, where the hep B surface antigen becomes negative.

For the small percentage of people who achieve this, usually after many years of treatment, their treatment can sometimes be stopped. Even after stopping treatment, they will still require ongoing monitoring. Regardless, where cirrhosis is present, lifelong treatment is still recommended.

For those who do not have cirrhosis, it remains critical that they discuss any interruption or cessation of medicines with their doctors.

What Is The New Medicine For Hepatitis B?

Treatments that have been available in the past include medicines such as lamivudine and interferon. There are limited roles for these medicines for special circumstances. New drugs are constantly under development in order to improve outcomes.

A newer version of tenofovir is available (tenofovir alafenamide) which is associated with fewer kidney issues. It is currently not widely available and not government funded.

Other drugs are being studied as ongoing efforts are being made to find a cure for hepatitis B.

Next: In Part 3, to be published next week, Dr. Lee looks at  other issues and circumstances around treatment.

Published 19 January, 2021

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