NSW HEPATITIS INFOLINE

The worst thing about hep B isn’t always the virus

The worst thing about hep B isn’t always the virus

The Worst Thing About Hep B Isn’t Always The Virus

Mary, one of our Hepatitis Speakers, has written a guest blog post about her experience of living with hepatitis B.

I have lived with hep B for all of my life. Although this is a virus that can badly damage the liver, the worst thing about it has mostly been the lack of information about it and the behaviour of other people towards me when they find out I have hep B.

No one told me what I should do about having hep B

Until after a check-up for my pregnancy, I hadn’t known that I had hep B. Even then, no one told me what I should do about it, and so neither the doctor nor myself paid it much attention. I certainly didn’t know that my son should get a vaccination for hep B within 12 hours of his birth, so it was very lucky that he was not also infected.

The discrimination against my hep B status began to impact my friendships

After migrating, in 2000, to Sydney from China, a very good friend of mine offered tremendous support to help me with my settlement. Australia was such a new environment and her help was very much appreciated. But, one day, without warning, she just walked away from me when she saw me… and never spoke to me again. She instantly became like a stranger to me.

Then I realised it was because she must have known about my hep B status. She and I went to the same doctor, and I believe she found out through there. This hurt a lot, and I was very sad about the loss of our long-term friendship. After this, I never told other friends that I had hep B and, even carried my own cutlery (even though the virus cannot be passed on through a shared eating utensil!).

The health effects of hep B became too much for me

Later, I had a breakout of hep B, and my liver function tests showed that the virus might be damaging my liver. The doctor prescribed anti-viral medication, which helped to get my blood indicators back to normal. The doctor said I needed to take this treatment every day for the rest of my life, otherwise the virus would most likely become resistant to the medicine.

While I have followed the doctor’s advice, concerns over my health and the social pressures of living with hep B have had a dramatic effect on my personality. I became withdrawn and began to lose too much weight.

Joining Hepatitis NSW activities turned my life around!

Luckily, all this has now changed. I got to know Hepatitis NSW, joined in their activities with the Sydney Chinese community and even became a Hep B speaker! Having now acquired more knowledge about hepatitis, I am confident that people living with hep B can lead a long and healthy life. More so, I know that while those who have hep B should encourage people close to them to get tested, they also have the right to keep their personal health matters private.

I have shared my experience with a great number of people from different communities and a variety of backgrounds. This, along with being an active participant in dancing activities, has greatly improved my mental wellbeing. I’ve even regained that lost weight!

Published 10 September, 2020

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Media Release | Reducing the burden of hepatitis on World Hepatitis Day

Reducing the burden of hepatitis on World Hepatitis DayTens of thousands of people in NSW are living with viral hepatitis. Of greatest concern are hep B and hep C – two viruses that can 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 accessing healthcare, treatment, or cure.

What is the significance of World Hepatitis Day?

World Hepatitis Day is an important event to highlight these issues and drive better outcomes. NSW Hepatitis Awareness Week starts on Monday 27 July, with World Hepatitis Day on Tuesday 28 July. A key activity for this year is the roll out of the bright, eye-catching artwork – wall posters, street pole posters, pull up banners, and pubs and clubs washroom advertising – throughout New South Wales. The messaging focuses on the availability and effectiveness of new hep C treatments.

For hep B, while there is currently no cure, babies born in Australia are vaccinated against it; also, any adult who needs to be vaccinated can be. Hep B testing is available and encouraged for anyone from an at-risk group. Should a person be found to be living with hep B they can have regular monitoring of their liver health, and, if required, treatment to manage their viral load.

For hep C, all Australians over the age of 12 have access to effective and affordable direct acting antiviral (DAA) cures. Hep C treatment is available through local doctors. Community organisations and government agencies work to raise awareness of the cure and help people into and through treatment.

70,000 Australians have been cured of hepatitis C since 2016

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.

Since the DAAs became available in Australia in 2016, more than 70,000 Australians have been cured of hepatitis C.

Hepatitis NSW CEO, Mr Steven Drew said the medications have a cure rate of 95 per cent. “They can be prescribed by any general practitioner, as well as 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.”

We have the rare opportunity to eliminate a chronic disease

Mr Drew said testing for hepatitis C was simple and easy as getting your GP to do a blood test.

“We’ve all led varied and adventurous lives filled with new experiences. It may be that some, or one, of those experiences exposed us to the chance of hepatitis C transmission. The only way to know for sure is to see your GP to have a blood test for hep C.”

“Should you learn you do have hep C, please seriously consider commencing treatment and get cured,” said Mr Drew.

“It is not often we get the chance to eliminate a chronic disease, but we have that opportunity now with hepatitis 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.

“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 hep.org.au.”

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10 Facts about viral hepatitis for World Hepatitis Day!

10 Facts about viral hepatitis for World Hepatitis Day!

This article was written by Dr Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

July 28 is World Hepatitis Day, marking a day where community organisations, clinicians, researchers, and governments raise awareness to the global burden of viral hepatitis. This year’s theme is “finding the missing millions” – in recognition of the many people around the world unaware they are living with hepatitis B and/or hepatitis C.

Did you know the date of World Hepatitis Day is also the birthday of Nobel prize winner Dr Baruch Blumberg? He not only discovered the hepatitis B virus, but also developed a diagnostic test and vaccine for the virus.

Here are ten more facts about hepatitis…

1. There are 5 viruses that predominantly affect the liver…hepatitis A, B, C, D, and E

They are all different viruses and are transmitted through different pathways. Hepatitis A and E are mostly spread through faecal-oral route and are preventable by hand hygiene and careful food preparation. Hepatitis A is more common in Korean communities and is also vaccine preventable. Hepatitis B is spread through blood and body fluids, hepatitis C through blood to blood contact. Hepatitis D only occurs in people infected with hepatitis B and is uncommon in Korean patients.

2. There are over 300 million people in the world that live with viral hepatitis

Less than 20% of the people with the virus are aware that they have the infection. The prevalence rates of hepatitis vary throughout the world, some areas have high rates of hepatitis B of over 10%. Higher rates of hepatitis B are seen in older Koreans born before vaccination programs were available.

3. More than 1.5 million people die each year from viral hepatitis

Many people are unaware of their diagnosis until the very late stages of disease and are often too late to be saved. Causes of death include acute liver failure, but the most common cause of death is liver cancer. Described as a ‘silent killer’, those unaware of their status may only have symptoms when the disease is very advanced and when options of treatment are very limited. It’s important to know your status!

4. Prevention of hepatitis remains central in eliminating viral hepatitis

Vaccines are available for both hepatitis B and for hepatitis A. Hepatitis B vaccine is now a part of Australia’s childhood vaccination schedule, starting at birth. It is safe for people of any age to have, even when pregnant. All people should be vaccinated. Know your status and get vaccinated if you are not protected. Those who are family members or partners of positive patients can access free vaccines through NSW health. Ask your doctor.

5. Hepatitis B and hepatitis C are transmitted through blood

Avoid sharing IV needles/syringes, razor blades and toothbrushes. It is safe to share meals, hug your family and friends. Stigma and discrimination is not acceptable. Talk to your health care provider if you have any concerns.

6. Hepatitis B, C, and D can lead to chronic liver disease, cirrhosis, and liver cancer

Many people can continue to have a healthy and normal life without realising their liver is being damaged. It is essential that, if you are at risk, you see your doctor regularly and get checkups. Taking care of yourself is also very important, in addition to getting vaccinated, avoid excess alcohol and do not smoke, take care not to take medications that can cause liver injury. Focus on a healthy diet, exercise and stay lean.

7. Hepatitis B can be treated

Treatment, for those who require it, is available in the form of an oral tablet. If you are living with hepatitis B, your doctor will assess whether you need treatment based on blood tests, your history and other test results. Even if you do not need treatment, you may need treatment later. Lifelong checkups are needed.

8. Hepatitis C can be cured

People with hepatitis C virus – confirmed with a PCR test – are eligible for treatment in Australia. Tablets are taken for 8 or 12 weeks and the treatment cures more than 95% of cases. Ask your doctor about this!!

9. Beware immune suppression

If you have a medical condition that requires immune suppression, you may be at risk of hepatitis B reactivation (meaning an increase in virus activity in the liver). Know your status and ask your doctor.

10. People with viral hepatitis can be at increased risk of liver cancer

Screening can lead to early detection and curative treatment. Liver cancer is the most common cause of death in patients with hepatitis B. It is asymptomatic and the only way to diagnose it early is by screening. If you have hepatitis B, you may need screening. This is simple, using an ultrasound on a six-monthly basis. It could save your life. High risk groups include older people, those with advanced disease (liver cirrhosis) and a family history of liver cancer. Treatment is available.

Celebrate World Hepatitis Day by spreading awareness about viral hepatitis

You or someone close to you, loved ones can be impacted by hepatitis. Celebrate World Hepatitis Day as a hepatitis community to increase awareness, talk about hepatitis and address the ongoing challenges of increasing prevention, diagnosis and treatment.

You, or someone you know could be one of the “missing millions” … you can play a part in “finding” them. You could save a life – yours, or someone you love.

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Hepatitis B was no barrier to having a baby

Hep B no barrier to having a baby

Image: Adobe Stock

Amanda, one of our Hepatitis Speakers, has written a guest blog post about her experience of living with hepatitis B. 한국어로 읽기

I did not understand what effect hepatitis B would have on the rest of my life

I first found out that I had hepatitis B when I was a student at high school in South Korea. Since I was only then a teenager, I did not understand what effect hepatitis B would have on the rest of my life. At that time, hep B information was not well disseminated to people in my country, so my family vaguely thought it had to do with having unhealthy livers. Unfortunately, it was much worse than that and, because of hepatitis B, I lost my grandmother, my aunt and, finally, my father.

I didn’t know much about the virus or how it was transmitted

After school, I went to college and studied Early Childhood Education. Although I was able to complete the course, it was believed there was a possibility my hep B virus could be transmitted to children, and I was not able to become a kindergarten teacher. This was very upsetting, and I had to find a different kind of work. After much searching, I discovered I was interested in – and good at – baking, so I eventually got a job in a bakery. Even so, I was still worried about transmitting hepatitis B. As I mentioned, I didn’t know much about the virus or how it was passed on, and I was concerned about making and handling food. If only I’d known then what I know now, I would not have worried as much!

I worried a lot and feared that my baby might also get hepatitis B

A few years later, I moved to Australia, met my loved one here, got married and, last year, had a beautiful son.

While I was expecting, I worried a lot and feared that the baby might also get my hepatitis. Fortunately, the hospital staff knew better. They gave me special care, continuously monitoring and managing my hep B, along with my pregnancy.

On the day my son came into the world, the midwife and the nurse put him, still covered in blood, on my stomach so he could feel my warm skin. But I screamed at them “Don’t you know I have hep B? Please go and give him his injection right now!” I needn’t have panicked though. They explained the first immunoglobulin injection, for a newborn baby of a mum with hepatitis B, can be done within the first 12 hours. After I spent a short while with my little boy, the nurses took him, washed him and gave him the injection. It was then I was happily able to hold him in my arms.

A baby who has a mum with hepatitis B will need a total of four vaccine injections

Raising a baby has not been easy. The doctor has told me that even a mum with hepatitis B can breastfeed her baby, but I have still been a little nervous while breastfeeding him. I am most mindful of blood. When I had a wound once, I put my son far away from me and treated my bleeding carefully.

A baby who has a mum with hepatitis B will need a total of four hepatitis B vaccine injections. At birth, then in six weeks, in four months and, finally, in six months. My son has finished all four but has not yet been tested for antibodies as he is not one year old. I am optimistic that his body has generated antibodies and immunity against hepatitis B since we have done everything we needed to. We are waiting for good news, but I cannot help but still be a bit anxious.

Because I am raising a baby, I have become more cautious about others too. I know that I cannot pass on hep B through casual contact, but I now ask parents of babies about vaccinations and hep B status. I do not want them thinking or saying that their child could get hep B from me.

I am proud to see my son grow up healthy

I am proud to see my son grow up healthy and without any major problems. I will make sure that I have regular monitoring of my liver every six months and am hopeful of a long healthy life with my loving family.

For any person living with hepatitis B, I would say to them that you can monitor your liver function every six months. You will only ever have to take medication for hep B if recommended. By doing this you can live as well as people without the virus. It is good for your peace of mind!

Published 20 May, 2020

Amanda has excitedly notified us that her one year old son now has antibodies against hepatitis B. That means he is immune to hep B for life. Congratulations, Amanda and your son! Your vigilance and proper knowledge has paid off!
[25 May, 2020]

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What is World Hepatitis Day?

What is World Hepatitis Day? On July 28 every year, the World Health Organization (WHO) sponsors World Hepatitis Day, a global alert around viral hepatitis. Prevention, diagnosis and treatment are promoted through free hepatitis testing screenings, information campaigns, entertainment, media engagement and vaccination drives.

Why recognise World Hepatitis Day?

Millions of people worldwide are affected by viral hepatitis, with tens of thousands dying every year. Of greatest concern are hep B and hep C – two viruses that can become life-long chronic conditions, eventually leading to liver cirrhosis, liver cancer and, 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, hundreds of thousands are unable to access healthcare, treatment, or cure. World Hepatitis Day is an important event to highlight these issues and drive better outcomes.

Why is hepatitis still a problem?

Around the world, the toll on liver health and the number of deaths caused by hep B and hep C varies sharply from country to country. Some countries are much more able to address viral hepatitis for their people. Poorer outcomes are due to poverty, social inequalities, inadequate information, stigma and discrimination, struggling public health systems, ineffective government policy and/or the lack of political will. Despite advances in medicine and treatment, there is no single easy solution for eliminating hep B and hep C.

How does Australia compare?

Fortunately, in terms of elimination of viral hepatitis, Australia is one of the leading countries in the world. Australia has strong health policies, programs, campaigns, and services as part of an effective strategy to address viral hepatitis.

How is Australia addressing hepatitis C?

For hep C, all Australians over the age of 12 have access to effective and affordable direct acting antiviral (DAA) cures. Treatment is available through local doctors. There are services, such as Needle Syringe Programs, that help reduce risk of transmission. Community organisations and government agencies work to raise awareness of the cure and help people into and through treatment.

How is Australia’s strategy to address hepatitis B performing?

For hep B, while there is currently no cure, babies born in Australia are vaccinated against it; also, 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 they can have regular monitoring of their liver health, and, if required, treatment to manage their viral load.

What is the impact of hepatitis-related stigma and discrimination?

is doing well but there are still issues of stigma and discrimination which prevent or deter people from accessing testing and treatment. Many people remain unaware of the lifesaving treatment options available to them. Myths and misconceptions about transmission and treatment persist in some communities.

Are we ensuring equal access to health services and programs?

While health services are usually easily accessible for most people in the capital cities, that is not the case for regional and remote communities. Poverty and disadvantage significantly impact the ability of too many Australians to access services. The lack of Needle Syringe Programs in prisons leads to greater hep C infection and re-infection rates amongst prisoners. These areas, and others, need work if Australia is to succeed in eliminating viral hepatitis.

How is World Hepatitis Day observed in Australia?

Across Australia, the day is supported by many government agencies, non-government organisations, clinicians, researchers, and communities. They might hold events, education sessions, display banners or posters, or talk to the media. Hepatitis organisations, similar to Hepatitis NSW, exist in every state, territory and federally; World Hepatitis Day marks a particularly busy time of campaign work, and community and stakeholder engagement for us.

In addition to World Hepatitis Day, New South Wales holds Hepatitis Awareness Week over the seven days leading up to and including July 28. This is sponsored by NSW Health and allows community organisations, Local Health Districts (LHDs), and prison clinics across the state to highlight hep C and hep B oriented messages, services and events for their respective communities.

Unfortunately, for 2020, the COVID-19 pandemic will overshadow World Hepatitis Day and NSW Hepatitis Awareness Week. At this stage we cannot say for certain which events or campaigns and services will be promoted in late July. Keep an eye on our social media, events calendar and The Champion for regular updates.

A final thought

Viral hepatitis exists year in, year out, and World Hepatitis Day itself isn’t going to be a cure-all, nor is it meant to be. July 28 acts as a focus for international and local efforts in elimination – to applaud the successes, to highlight existing need, and advocate for changes.

Hep facts

  • July 28 celebrates the birthdate of Baruch Samuel Blumberg, discoverer of the hepatitis B virus.
  • World Hepatitis Day is one of only eight official global public health campaigns marked by the World Health Organization (WHO).
  • There are currently five different hepatitis viruses – A, B, C, D, and E. Each one can significantly impact liver health and, in some cases, lead to death. In Australia, only hep B and hep C are significant community issues.
  • Hepatitis D – which only occurs in people with advanced cases of hepatitis B – and hepatitis A, and hepatitis E – both mainly transmitted via faecal contamination in water, or unwashed hands – are all rare in Australia.

 

 

 

 

 

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Chinese Community Leaders Forum: “Hepatitis B – Why bother?”

Hepatitis NSW Chinese Community Leaders Forum – which is funded by WentWest, the Western Sydney Primary Health Network – was held on 31 October, 2018 at Castle Hill RSL. The event attracted 33 prominent leaders from the Chinese community and was part of an ongoing partnership with Western Sydney Local Health District to tackle hepatitis B in our community.

The event educated community leaders and highlighted the importance of hepatitis B testing, monitoring and treatment in the Chinese community.

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