Yarnin’ about hep B
A
booklet about hep B for Aboriginal people in NSW
Yarnin’ About Hep B is a community initiative and developed by Hepatitis NSW, assisted by Larissa Smyth, Kerri-Anne Smith, Tameka O’Donnell (AH&MRC), Anni Slater, Bev Tyson, Keziah Bennett-Brook and Joe Lawler. Our community engagement and focus testing groups included people from the New England region and south west Sydney.
The booklet content is drawn from Yarnin’ About Hep C (Hepatitis NSW), www.hep.org.au/hep-b (Hepatitis NSW), and informed by The Hep B Story (Menzies University), The Hepatitis B Story (St Vincent’s Hospital, Melbourne), Hepatitis B Bear (Liverpool Hospital), NSW Ministry of Health factsheet, ASHM B Positive resource, and The Aboriginal Gender Study Community Report (Aboriginal Health Council of South Australia).
First edition – July 2023
This second edition - February 2024
Produced by Hepatitis NSW.
Layout/design by Rhea Shortus.
Aboriginal artwork by Jasmine Sarin.
ISBN: 978-0-9585318-6-3
Thanks to Beverly Tyson and Anni Slater for facilitating focus testing.
This work is copyright. It may be reproduced in whole or in part for study training purposes subject to the inclusion of an acknowledgment of the source and no commercial usage or sale of content or imagery.
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Hep B facts:
Having hep B for a long time can cause liver disease and liver cancer
Vaccination can protect babies and adults so they don’t get hep B
Ask your doctor for a blood test to see if you have hep B
Treatment for hep B lowers the chance of liver damage and cancer
Hep B medicines work well and are easy to take
There are lots of things you can do to stay healthy and manage hep B
If you have hep B, get a check-up every 6 months.
6 MONTHS
A grandmother’s story
Our blood is very special, and our bloodline is passed on within our family, between mothers and children. Sometimes our blood can hold a sickness, called hepatitis B, that can be passed on when the blood from someone with hep B enters the blood of another person.
A blood test can tell if we have the hep B. It’s important to know if we have this sickness in our family, so we can see the doctor for regular check-ups, or if we must take medicine, to keep us healthy and safe.
If we don’t have the sickness, we can get a vaccine to protect us from the sickness in future.
Now days, since 1997, our babies have been offered the vaccine. But that doesn’t mean all our young ones are protected. Everyone should get a blood test to check. If they are not protected, they should get vaccinated.
Hep B vaccination has been offered in NSW to Aboriginal and Torres Strait Islander, and Asia and Pacific background babies since 1997 with follow up over the full course. This became part of the national immunisation schedule around the year 2000, with the “Blue Book” follow up system that requires completion before entering day care or school.
The story of this book
The hepatitis B story is a story about family.
Mums can pass hep B on to babies at birth. Kids can catch it from each other through rough games, scratches, and cuts. Hep B can be passed on through sex. People can get it from diabetes test kit scratches, or needles used for drugs or tattooing. Sharing razors can also spread hep B.
This booklet tells stories as if you already have hep B, and stories about how you can avoid catching it. This is so we can tell everyone’s hep B story.
“Our cultural sharing sometimes isn’t cultural caring.” Focus group participant
Hep B and my liver
Hepatitis B is a liver virus that lives in blood and sexual fluids (semen and vaginal fluids). It is too small to see but if left unmanaged, can slowly damage the liver.
Some people with hep B can become very sick. They can get liver scarring (fibrosis), or hardening (cirrhosis) and have a higher risk of liver cancer.
Your liver is very important. It cleans your blood. It makes energy from your food. It helps fight other sickness.
A hard liver can’t filter or clean your blood very well. Which means it can’t make energy and help fight other sickness.
How do you get hep B?
Hep B lives in blood and sexual fluids.
You can get hep B from:
Blood-to-blood contact with the blood or sores of someone with hep B
Mum to baby during birth
During sex without a condom and lube
Sharing equipment used for injecting, tattooing or piercing
Sharing things with specks of blood on them (razors, blood sugar testers, toothbrushes)
Blood-to-blood contact during fights, accidents or contact sports
Hep B
Hep B
You CAN’T get hep B from: mosquitoes sharing food drinks or cigarettes breastfeeding kissing touching coughing or sneezing.
You can be protected by having the hep B vaccination.
How many people have hep B?
More than 250 million people around the world have hep B.
More than 226,000 people in Australia are living with hep B.
1 in every 100 Australians has hep B, but it is 2-3 times higher in our Mob.
Only 1 in 3 people living with hep B know they have it. The only way to know is to get a heb B test.
2-3 in 100 people in our Mob have hep B
What does hep B do?
The story of what hep B does inside our body can change over time, and we will not feel anything when these changes happen. Our bodies have an immune system. Its job is to fight germs and sicknesses that invade our bodies. Most of the time our immune system is very good at doing its job and fights off invaders. But the hep B virus is very sneaky. It makes its home in your liver cells where it can go to sleep, so your immune system doesn’t know it’s there. How long it sleeps for is different for different people. If the hep B virus wakes up, and your immune system goes to fight, it has to attack the liver cells, because that is where the hep B virus has made its home. This means your liver cells are being killed off.
You might not feel anything, so you might not know what’s happening. The only way we know what hep B is doing, is if you have regular blood tests every 6 months with the hep B doctor.
6
MONTH
CHECKUPS
Testing for hep B
Every one of our Mob should have a hep B test. Hep B can be living in you for a long time. When it’s not sleeping, it can damage your liver and you won’t even feel it. The only way to know if you have hep B is to do a blood test to look for the virus.
The hep B blood test can tell the story of your blood. It lets you know if:
You’ve got hep B and you need to see a hep B doctor
You need to get vaccinated
You have had hep B in the past and you don’t have it now, but you might want to encourage your family to get tested as well
You’re protected against hep B by vaccination some time back
If the blood tests show you’re protected against hep B, that’s because you either:
Had hep B in the past, or
You already had the hep B vaccine
If you’ve got hep B it’s important to see your doctor every 6 months for a liver check-up.
The doctor will do blood tests to see how much virus is in your blood and if your liver is working well. If your body needs help controlling the hep B or your liver needs protecting, the doctor might put you on treatment to keep you healthy.
Hep B treatment and medicine
Not everyone with hep B needs treatment. Your blood tests will tell whether you need to go on treatment. Only your blood test can tell the true story of how much hep B virus is in your blood and how well your liver is working.
Regular check-ups are important, to make sure the hep B isn’t damaging your liver. If you do need to go on treatment, you will need to take 1 tablet each day. It’s important to take your tablet each day so it continues to work well. People on hep B treatment don’t get side effects from the medicine. If you don’t take the medicine, your liver might get very sick and you may risk getting liver cancer.
It is important to see your doctor every 6 months to have blood tests and a liver check-up.
Treatment will keep hep B under control and help protect your liver. It will stop the hep B from causing more damage. You might be eligible for help with the costs of medicines, talk to your prescriber.
Vaccination for hep B
Since 1997, all our babies born in Australia have been offered the hep B vaccine. But that doesn’t mean all our young ones are protected.
Vaccination takes 3-4 jabs over 6 months, depending on age.
Babies start vaccinations soon after birth, with follow up jabs within 6 months.
Adults can get vaccinated at the AMS, the doctor, the liver clinic or at sexual health clinics. You can get catch up vaccinations for any young ones who missed out when they were babies.
For our Mob, vaccination is free. Vaccination is also free for children and teenagers, as well as family and people in close contact with someone who has hep B.
There is a vaccine for hep B
How to check if you’ve been vaccinated
You can check if you or your children have had all the hep B vaccinations by asking for an ‘immunisation history statement’ (see who to ask below).
The Australian Immunisation Register (AIR) records all vaccines given to all people in Australia.
The AIR includes vaccines given:
Under the National Immunisation Program through school programs privately, such as for flu, COVID or travel
How to get your immunisation history statement:
Using your Medicare online account through myGov or Medicare mobile app.
Call AIR and ask them to mail it to you. It can take up to 14 days to arrive in the post.
Phone AIR on 1800 653 809Monday to Friday 8 am to 5 pm.
Ask your AMS doctor to print it out for you.
Find out more about AIR here: www.servicesaustralia.gov.au/ individuals/services/medicare/ australian-immunisation-register
Family and hep B
A hep B story is often a family story. Mums and dads, brothers and sisters, aunties and uncles and grandparents might have hep B.
If any of your family have hep B it’s a good idea for everyone to get tested and vaccinated.
If someone in your family has hep B it’s a good idea for everyone:
to get tested and vaccinated to be blood aware to clean up blood spills
throw out tampons, pads, bandages or tissues in sealed plastic bags
People can pass on hep B without knowing. No blame no shame - let’s start having this family yarn and protect our Mob.
to have their own razor and toothbrush
to tell young ones about unsafe tattooing and other blood risks
Women’s business
When women living with hep B become pregnant it is important to get a hep B blood test. The test will let the doctor know how much virus is in their blood. Some women might need to take medicine in the last months of pregnancy to lower the risk of the baby getting hep B.
The baby will be given all the vaccines that are part of Australia’s immunisation program. Babies born to mums with hep B must have an extra injection called immunoglobulin to help protect them from getting the virus, and will be vaccinated more quickly.
Breastfeeding is recommended for mums and bubs because it doesn’t pass on hep B and it is very good for baby’s development. But if you have cracked and bleeding nipples it’s a good idea to stop until your nipples heal.
To keep your milk supply going, you can express and throw out your breast milk, until you’ve healed. Always discuss this with your doctor or nurse.
On the rare chance hep B is passed on, children with hep B usually feel fine and continue to grow normally.
Mum and the health nurse or doctor can talk and work together to make this hep B story a good one.
“ Here’s to strong women. May we know them. May we be them. May we raise them.”
Unknown author
A mother’s story. When I was pregnant, I had a blood test, and was told I had a sickness called hep B. I was very scared at first and was worried for my baby. I had to see a special hep B doctor who told me what I needed to do to keep my baby safe. It wasn’t hard. I had blood tests, to check if I was likely to pass hep B onto my baby. The doctor told me if there was a high risk, they could give me some medicine to reduce the risk. The risk of passing on hep B was high, so my doctor started me on medicine when I was 28 weeks pregnant. The medicine lowered the risk of me passing on hep B to my baby.
When my baby was born, my doctor gave her the medicine (extra injection, called immunoglobulin) and the first dose of the hep B vaccine, which all babies get. It was very important for my baby to get these medicines within 12 hours of being born, to lower the risk of getting hep B. This was the first dose of hep B vaccine my baby needed; it was important that she have 3 more, at the right times and more quickly. All babies should have four doses of the hepatitis B vaccine: at birth, at 6 weeks, at 4 months, then at 6 months. It is really important that the doses are given at the right time.
My baby needed a final test 3 months after the last vaccine shot to make sure she did not have hep B, and that the vaccine had worked.
My baby doesn’t have hep B!
Men’s business
Aboriginal men hold an important place among Aboriginal people and culture. So it’s important we look after our health.
Talking to your doctor about hep B is a good idea. Talking about hep B with other men, just the brothers, is also a good idea. Because hep B is often a family story, men have a role to play: to be a good father, a teacher, a hard worker who is a carrier of culture, a loyal man who is confident. Someone who can help the family deal with hep B. Brothers – make sure you get tested.
Hep B can be in male sperm. Being a culturally caring man means knowing if you pose a hep B risk when having sex. Talk to your doctor about this. Carry condoms and lube and have safe sex when there is a hep B risk.
Sometimes the hep B story is about prison. About 30% of people in NSW prisons are Aboriginal. Any blood-to-blood contact (like sports and fighting) is a risk for hep B. In prison, tattooing and injecting equipment is often shared. These end up getting shared lots of times and so there is a big risk of catching hep B. Testing, vaccination, and care is available from the Justice Health nurse.
Staying healthy and living with hep B
People with hep B can live long and healthy lives. The virus might go through stages of sleeping or being active over many years. Sometimes the liver is left alone, sometimes it gets damaged. There’s no way to know if your liver is getting damaged without getting a hep B check-up every 6 months. This is the most important thing you can do to stay healthy.
Hep B is completely manageable by checkups and treatment if needed.
When you reach around 40-50 years old, your doctor will ask you to have blood tests and a liver ultrasound every 6 months. If liver cancer is found before it is too big, there are treatments. Leaving it too late can be really serious.
Alcohol or grog, can damage the liver. If you have hep B and you drink too much grog it means you have two things ganging up on your liver. The damage to your liver happens more quickly and is more severe.
Another thing that gangs up with hep B against your liver is fatty liver disease. It is mainly caused by being overweight and having diabetes. Fat grows in the liver and leads to liver damage (fibrosis and cirrhosis).
Avoid drinking too much and putting on too much weight.
Talk to your doctor or nurse about staying healthy and looking after your liver.
Drink water. Go for 8 to 10 cups each day.
Eat a healthy diet: low in fats, salt and sugar.
Eat plenty of fresh vegetables.
Play a game of footy or throw a ball around, go for a walk, run or swim.
Should I tell anyone?
If you have hep B, your doctor will ask about your contact with other people. You or your doctor can then tell these other people they have been at risk, so that they can get tested and vaccinated. This usually means housemates and people you have had sex with. It is called contact-tracing. Your doctor or Aboriginal Health Worker will keep it confidential. They can test and vaccinate your contacts, without telling them your name.
You do not have to tell healthcare workers (like doctors, nurses and dentists). All healthcare workers have ways of working that they must follow to protect themselves and all their patients from catching viruses and other infections. These do not change if they are treating someone with hepatitis B.
If you know you have hep B, you must take reasonable precautions against passing it on. This includes using condoms and not sharing personal items that could have blood on them, like toothbrushes, razors, or sex toys. Ask your hepatitis specialist about the risks to sexual partners and housemates and what reasonable precautions you should take.
If someone you are going to have sex with asks if you have hep B, you legally have to tell them, before you have sex, or you need to walk away if you don’t want to disclose. If you don’t tell a sexual partner about having hep B when asked, this may mean your partner has not consented to the sexual activity, and you may be charged with sexual assault. If you are planning to have a baby, you should talk with your doctor. You should ask your partner about hep B testing and vaccination. Use condoms until your partner’s vaccination has been completed and they are immune. If you work in healthcare or the military, you may have to tell your employer if you have hep B. You may have to tell your insurance company about infections and illnesses.
You can call the HALC advice line to learn more about who you have to tell, on 02 9492 6540
More information & support
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QUESTIONS ABOUT THIS BOOKLET
1 Reading Yarnin’ about hep B was useful for me
2 After reading Yarnin’ about hep B I know more about hep B testing, or vaccination, or check-ups
AGREE AGREE NEITHER DISAGREE STRONGLY DISAGREE
3 Reading Yarnin’ about hep B made me think about: (TICK AS MANY AS YOU WANT) calling the Hepatitis Infoline going to the Hepatitis NSW website at www.hep.org.au talking to someone else about my hep B
changing my lifestyle (what I eat or drink, or how much I exercise) making an appointment with a health worker it hasn’t made me think about doing anything
4 How could we make this booklet better?
QUESTIONS ABOUT YOU
5 What is your postcode?
7 To enter the draw for the $100 voucher, please give us your name and phone number, email address or prison MIN. This prize offer is for NSW residents only.
6
Please describe yourself: (TICK AS MANY AS YOU WANT)
Person with hep B
Partner, family or friend of someone with hep B
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Other (YOU CAN WRITE YOUR COMMENT BELOW)
NAME:
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THANKS FOR TELLING US WHAT YOU THINK! Your answers will help us to make our booklets more useful.
Hepatitis NSW respects your right to privacy. We have a policy and set of procedures on how we collect, use, disclose and hold your personal info. For a copy of the policy, please contact us on 1800 803 990 or visit www.hep.org.au
An Australian Aboriginal person played a role in the hepatitis B Nobel Prize
Hepatitis B was discovered by Dr Baruch Blumberg, an American scientist, studying liver disease.
The virus was first found in the blood of an Australian Aboriginal person. Dr Baruch had discovered a virus which matched a type of liver disease. This finding led to the discovery of hep B. Dr Blumberg won a Nobel Prize in 1976 for his work.
Hep B
Yarnin’ about hep B poster
Order your own FREE poster, with original artwork by Jasmine Sarin.
GO TO: www.hep.org.au/keyservices/free-hepatitisresources OR CALL: Hepatitis Infoline 1800 803 990
Tx! Mag is our free easy-read magazine.
Full of comics, puzzles and useful info about viral hepatitis, Tx! is a fun way to learn about hepatitis. We run workshops with community members to develop the themes and storylines.
Our hep B Tx! stories are aiming to help Close the Gap on viral hepatitis care and treatment.
READ OUR HEP B EDITIONS ONLINE:
#26 issuu.com/HepatitisNSW/docs/txmag26 #29 issuu.com/HepatitisNSW/docs/txmag29-issuu #32 issuu.com/HepatitisNSW/docs/tx32-issuu
Order back copies/subscribe: hep.org.au/key-services/free-hepatitis-resources
