This booklet does not aim to replace advice provided by a doctor or nurse. If you have hepatitis C (usually called hep C), talk with a doctor or nurse about your treatment options.
The booklet is designed for use in NSW. For more information about anything in this booklet, please contact the Hepatitis Infoline on 1800 803 990.
This booklet is based on information available at the time of publication. It has been produced with input from key experts, with special thanks to Assoc Prof Simone Strasser for her final review.
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.
Layout/design by Rhea Shortus.
All photos by Exposition by RAF.
First edition – February 1996
This 16th edition – August 2024 ISBN: 978-0-9585318-3-2
Hepatitis NSW would like to acknowledge and show respect for the Gadigal people as the traditional custodians of the land on which this booklet is published. We extend that acknowledgement and respect to all Aboriginal and Torres Strait Islander people.
ABN 30 408 095 245
A non-profit health promotion charity funded by the NSW Ministry of Health. Accredited by the Quality Improvement Council of Australia (QIC). Donations of $2 and over tax deductible.
easy to cure.
What is hepatitis C?
Hepatitis C is a liver infection caused by the hepatitis C virus. It is now easy to cure.
Hep C virus is transmitted when blood with the virus gets into someone else’s blood stream.
Hep C damages liver cells when it reproduces itself. The damage doesn’t always make you feel sick but if hep C is not treated, you might develop liver cirrhosis.
Doctors can provide treatment for hep C which cures most people.
Do you think you might have hep C?
Ask your doctor for a hep C test, or phone the Hepatitis Infoline for more info on 1800 803 990 >>
The ABC of hepatitis viruses
Hepatitis A
A liver infection caused by hep A virus. The virus makes people sick but only for 1-3 weeks.
Hepatitis B
A liver infection caused by hep B virus. Most adults who get hep B clear the infection. Most children who get hep B develop hep B for life and have a risk of liver disease later in life.
Hepatitis C
An easily-cured liver infection caused by hep C virus.
Food or water contaminated with sewage.
Anything with human faeces (poo) on it that comes in contact with the mouth.
Mother to baby, at birth.
Blood-to-blood contact (when the blood of someone with hep B gets into another person’s bloodstream).
Sexual fluids during sex.
Blood-to-blood contact (when the blood of someone with hep C gets into another person’s bloodstream).
Mother to baby, at birth (less than 5% chance)
Not being vaccinated.
Travel in countries with poor sanitisation systems.
Eating food where proper hygiene has not been practiced.
Household contact with a person who has hep A.
Sexual contact involving anal sex with a person who has hep A.
Not being vaccinated.
Being born to a mum who has hep B, or being born in a country where there are high levels of hep B.
Sexual contact with a person who has hep B.
Sharing fits and equipment when injecting drugs.
Having a needlestick injury, or tattooing or body piercing with unsterile equipment. Also unsterile medical, dental or cosmetic procedures.
Sharing fits and equipment when injecting drugs.
Tattooing or body piercing with unsterile equipment.
Being born to a mother who has hep C.
Sex between men when HIV is present.
Having a needlestick injury.
Receiving blood products before 1990 in Australia.
Unsterile medical, dental or cosmetic procedures.
Hepatitis A
Blood tests usually not done due to the short nature of illness.
Hepatitis B
People recently exposed should see a doctor, be vaccinated immediately and have regular follow-up visits.
(It may take 4-6 months before hep B symptoms develop.)
Hepatitis C
For adults it takes 2 weeks (PCR test), 12 weeks (antibody test).
For babies it takes 8 weeks (PCR test), 18 months (antibody test).
Yes. It is safe and effective.
Get vaccinated.
Wash hands after going to the toilet and before eating.
Household contacts and sexual partners of someone with hep A should be given immunoglobulin (drug that gives shortterm protection).
Practice safer sex.
Rest and keep up fluids, but no treatment needed.
Yes. It is safe and effective. It’s part of the national immunisation program.
Get vaccinated.
Babies born to mums with hep B should receive Hb immunoglobulin and vaccination within 12 hours of birth. Hep B vaccination for babies is part of the national immunisation program.
Don’t share fits or other equipment when injecting drugs.
Avoid blood-to-blood contact.
Practice safer sex.
Good treatments are available.
Treatment aims to prevent liver damage but is not a cure.
Not everyone will need treatment. Phone the Hepatitis Infoline for more information.
None available.
Do not share fits or other equipment when injecting drugs.
Avoid blood-to-blood contact.
Avoid backyard tattooists and piercers. Use places that use sterile procedures. Avoid needlestick injuries.
Men who have sex with men practice safer sex.
Cures are available. Curing your hep C completely clears the virus from your body.
Speak to a doctor or phone the Hepatitis Infoline for more information.
Hep C tests
Blood tests can detect hep C. You should be tested for hep C if you have: ever injected drugs or steroids been in prison had blood transfusions or blood products before February 1990 tattoos or body piercing migrated from a country or region where hep C is common (such as Egypt, Pakistan, Mediterranean, Eastern Europe, Africa and Asia) been a man who has sex with men been born to a mother who had hep C while pregnant had a needle-stick injury abnormal liver function tests or evidence of liver disease hepatitis B or HIV
Antibody test
Hep C testing starts with an “antibody test”. This test looks for human antibodies –substances in the blood that the body produces in response to the hep C virus.
PCR test
If your antibody test is “positive” you need a “PCR test”. This test looks for the actual hep C virus in the blood. If the PCR test result is “positive” it means that you currently have hep C and can be cured. PCR is sometimes called an RNA test.
If you are unsure you have had a PCR test, ask your doctor to retest you with PCR.
Genotype test
The genotype test shows what strain (type) of hep C you have. These tests are used when your doctor prepares you for treatment.
Dried blood spot test (DBS)
The dried blood spot test (DBS) is a new, free, easy and private way to test for hep C. DBS uses drops of blood from the end of your finger and doesn’t involve doctors or nurses taking blood from veins using a needle and syringe.
The DBS Test has a number of advantages:
No needles or syringes
Confidential and anonymous
Convenience
See pages 14 - 15 for more information about DBS or go to the DBS website: www.health.nsw.gov.au/dbstest
FibroScan
A FibroScan machine shows the stiffness or scarring of your liver by sending a vibration (pulse) through your liver. It’s painless, like an ultrasound, and takes just 15 minutes. There are no needles involved.
FibroScans are used when your doctor prepares you for treatment. The higher your score, the more likely that your liver has cirrhosis (you can still be treated and cured). If you do have cirrhosis, you will be cured by a specialist, who will also provide long term follow up.
For more about Fibroscans, Google “hep nsw fibroscan apri” >>
To find out where you can get a Fibroscan, Google “hep nsw directory” >>
Are you worried that nurses can’t find your veins?
Ask for a dried blood spot test (DBS)
C tests
To test for hep C, make an appointment with your doctor, nurse or clinic.
ANTIBODY TEST THIS BLOOD TEST WILL SHOW IF YOU HAVE EVER BEEN IN CONTACT WITH HEP C (HAD THE VIRUS IN YOUR BLOOD)
ANTIBODY NEGATIVE MEANS YOU HAVE NEVER HAD HEP C
NO MORE TESTS NEEDED
ANTIBODY POSITIVE MEANS YOU HAVE BEEN IN CONTACT WITH HEP C AT SOME TIME IN YOUR LIFE
IF YOU ARE EXPOSED TO HEP C, FOR A 612 MONTH PERIOD, YOUR BODY WILL TRY TO CLEAR THE VIRUS . A ANTIBODY A
1 IN 4 PEOPLE WILL CLEAR HEP C WITHIN 6 MONTHS
PCR TEST THE PCR TEST SHOWS WHETHER THE VIRUS IS PRESENT IN YOUR BLOOD OR NOT. (ALSO CALLED HCV RNA TEST)
PCR NEGATIVE MEANS YOU HAVE CLEARED THE VIRUS AND THAT YOU DO NOT HAVE HEP C
PCR
PCR
PCR POSITIVE MEANS THAT THE HEP C VIRUS IS PRESENT IN YOUR BLOOD AND YOU HAVE HEP C
NO MORE TESTS NEEDED
YOUR DOCTOR, NURSE OR CLINIC WILL DO A PRE-TREATMENT ASSESSMENT TO WORK OUT THE BEST TREATMENT FOR YOU. THEY COULD INCLUDE ANY OF THE TESTS BELOW
TEST
This is a blood test that measures how your liver is working. It can be helpful in letting your doctor, nurse or clinic know more about how well your liver is working by measuring certain levels in your blood.
FIBROSCAN
This is a simple, quick, pain-free way for a nurse to check for any liver damage . It is like an ultrasound and doesn’t hurt. It will show up any fibrosis and cirrhosis. If a fibroscan is not available an ultrasound might be used instead.)
OTHER CAUSES OF LIVER DISEASE
L ifestyle factors may affect your liver . Heavy alcohol consumption, smoking, poor diet, diabetes and obesity may affect liver health. Your doctor or nurse will help you to improve your overall liver health.
A blood test that checks which type of hep C virus you might have. The different types of hep C virus are genotypes 16.
FIBROSIS MARKER
The APRI score is used when your doctor prepares you for treatment. Your APRI score shows if your liver is damaged by measuring substances in your blood. If the result is low, you may not need any other tests done.
OTHER MEDICAL HISTORY
It’s really important to tell your doctor, nurse or clinic if you have been on treatment for hep C before Your doctor, nurse or clinic will also look at your medical history and any other medications you might be taking to determine the best possible treatment for you.
Once you have been cured through treatment, there is no need to have another antibody test ever again. This is because even after cure, the hep C antibody test result will show positive. Everyone who has ever had hep C will show antibodies for life. The antibody test does not mean you have hep C. It is the PCR test which shows whether you have hep C or not. After you’re cured the virus is cleared from your body, and it means you can’t pass the virus on to someone else. You can get hep C again, so if you are at risk, get tested and treated again. If you’re still injecting, have PCR or DBS tests every 6 months.
our Hepatitis
www.health.nsw.gov.au/dbstest
The DBS Test has a number of advantages
No needles or syringes DBS uses drops of blood from the end of your finger and doesn’t involve doctors or nurses taking blood from veins using a needle and syringe.
Confidential and anonymous By doing the test at home, no one has to know who you are and you don’t need to see anyone face to face. You just need to provide enough detail for someone to contact you with the results.
Convenience DBS is ideal if it is hard to get to a clinic or GP, you can take the test any time that suits you. Accessing treatment If you complete a DBS test and your result is positive then the people giving you results can help you access treatment. If you complete a DBS test and your result is positive, then the people giving you the results can help you access treatment. You may also need a follow up test to confirm the result.”
Further information To chat about DBS or for further information Call
Or go
What is the DBS test? Did you know that around 1 in every 5 people living with hepatitis C don’t know they have it? 1 Every person with hep C can be cured –but first you need to be tested. The dried blood spot test (DBS) is a new, free, easy and private way to test for hep C. DBS is FREE if: you have ever injected a drug, or identify as Aboriginal or Torres Strait Islander, or have ever been in prison, or are from countries where hepatitis C is more common. You also must be over 16 years of age and living in NSW. The test can be accessed in two main ways: 1. at home, you register online and a testing kit is sent to you in the mail. 2. in a clinic or pop-up service, you can get a nurse, a peer or another worker to help you and they can register you online. You can get your results by phone, SMS text or email so you don’t need to go to a clinic or see a doctor to do this test.
Hep C cure
The best hep C cures ever are available now!
They are called DAAs (Direct Acting Anti-virals) and are listed on Medicare.
The new cures are different to the previous treatments.
Cure over 95% of people
Have few or no side-effects
Pills only, and just a few pills a day
Usually take only 8 or 12 weeks
No injections
Can be given by many local doctors and some nurses, at Aboriginal Medical Services and at hospitals.
Curing hep C completely clears the virus from your body – it won’t come back, unless you catch hep C again. It helps reduce liver inflammation and can reverse fibrosis and even cirrhosis.
Everyone has the same right to the new hep C treatments, even if you: have cirrhosis or other liver damage live with mental health issues inject drugs have been treated before and got hep C again have been treated before and it didn’t work are in a NSW prison (you can ask to talk with the Justice Health Nurse).
There is no better time to think about curing your hep C.
For more information, phone the Hepatitis Infoline 1800 803 990 >>
See our hep C treatments chart on page 18 >>
Find your local doctors, nurses and pharmacies who work with the new DAA treatments in our online directory - Google “hep nsw directory”.
There has never been a better time to cure hep C.
The hep C treatments
**VOSEVI IS A SALVAGE THERAPY AND ONLY USED TO CURE PEOPLE IN THOSE VERY RARE CASES WHERE PRIMARY TREATMENT WAS UNSUCCESSFUL
WHO ARE THEY FOR? ANYONE WHO HAS HEP C AND A MEDICARE CARD
MOST PEOPLE HAVE NO OR VERY MILD SIDE-EFFECTS * FOR A SMALL NUMBER OF PEOPLE, TREATMENT MAY LAST LONGER
Where do I go for treatment?
Many doctors, some nurses and all hospital liver clinics can treat you. You will be tested to confirm you have hep C, identify your hep C genotype and assess your liver health. If you don’t have signs of serious liver damage, most doctors and some nurses can treat you. If you have cirrhosis, you will usually be treated at a hospital liver clinic. This is because people with cirrhosis need extra monitoring during and after treatment.
Filling prescriptions
If you are treated by a doctor or nurse you can get your script filled at a pharmacy (chemist shop). If you are treated at a hospital liver clinic you may need to use the hospital pharmacy.
The pharmacy will charge you for each prescription. If you have a concession card (e.g. Healthcare Card) the cost is up to $7.70 per script. If you don’t have a concession card, you might pay up to $31.60.
For Aboriginal and Torres Strait Islander people who are registered for the Closing The Gap program, the medications are covered.
Find your nearest treatment doctor or liver clinic - Google “hep nsw directory” >>
Our workers can do a search for you over the phone, call Hepatitis Infoline on 1800 803 990 >>
Pharmacies order in your treatment drugs (they don’t keep supplies). They will ask you to come back in a couple of days to pick them up.
To find your nearest pharmacy - Google “hep nsw directory” >>
Low or no side-effects
Most people have no side-effects or very mild side-effects from the treatment. DAA sideeffects are almost zero compared to the old interferon-based treatments.
There has been no better time to think about curing your hep C.
Women should avoid pregnancy while on treatment (men and women must avoid pregnancy while on any treatment that contains ribavirin, and for six months afterwards).
During treatment
Most people don’t need to visit their doctor during treatment. You should visit 12 or more weeks after treatment finishes, to have tests to show if you have been cured.
After treatment
Even if you are cured, you won’t have immunity to hep C. Avoid blood-to-blood contact with others so you don’t catch hep C again (see page 21).
If you are cured of your hep C, you might already have some liver damage. If you have liver damage you have a risk of liver cancer. You’ll need to continue seeing a Liver Clinic or specialist for ongoing care, usually every six months.
Interferon is gone –it is no longer used for hep C treatment. Biopsies are not needed for hep C treatment.
If treatment is not successful
If you were not cured of hep C, you will be offered other treatments. It is important to remember: you can get treatment as many times as needed, until you are cured you will be referred to a hepatitis clinic or specialist.
Catching hep C again
Reinfection (catching hep C again) is easy to treat and is called re-treatment. You can be treated with the same or similar treatment as your first treatment and you’re just as likely to get cured.
See our hep C treatments chart on page 18 >>
Most people have very few problems with the current hep C cures.
Other hep C info
Liver cirrhosis
If you are cured of hep C but already have cirrhosis, visit your Liver Clinic or specialist every 6-months for ongoing care. Reversal of liver cirrhosis can happen if you are cured of your hep C.
Cirrhosis is build-up of scar tissue in the liver. It reduces blood flow through the liver. The liver then doesn’t work as well as it should.
Vaccinations for hep A and hep B
If you have hep C, or had it in the past, you might be at risk of hep A or hep B. If blood tests show you don’t have immunity to hep A or hep B, ask your doctor about being vaccinated. There is no vaccination for hep C.
See our hepatitis ABC table page 6 >>
FibroScan and APRI tests are used to measure and monitor cirrhosis.
For more info, search for “APRI” and “Fibroscan” on our website at hep.org.au >>
Telling other people about hep C
You might be asked if you have hep C, or had it in the past. At work you don’t have to tell employers, work colleagues or customers about your current or past hep C.
Except you legally must tell: the blood bank the sperm bank, if donating your employer, if you are a health worker doing particular surgical procedures insurance companies, if you are applying for life insurance the Australian Defence Force, if you want to work for them (army, navy, air force) your sporting association, if you are a professional boxer or martial arts fighter
For detail about the health care worker responsibilities Google “hep nsw workplace issues” >>
Pregnancy and hep C
Some women find out they have hep C when they are pregnant. These pregnancies should continue as normal.
Women should avoid getting pregnant while on treatment (men and women must avoid pregnancy while on any treatment that contains ribavirin, and for six months afterwards).
Hep C treatment can be started after you have stopped breastfeeding your baby. There is no evidence that breastfeeding spreads hep C. Mothers with hep C are encouraged to breastfeed. Because hep C is spread by blood, if your nipples are cracked and bleeding, you should stop nursing until they heal. Instead, express and discard your breast milk until your nipples are healed. Once your breasts are no longer cracked or bleeding, you can fully resume breastfeeding.
Women with cirrhosis, who want to start a family, should talk to their Liver Clinic doctor or specialist before getting pregnant.
Men should not father a baby while on treatment. You should not plan to have a baby during treatment and until 6 months after finishing treatment.
Babies, kids and hep C
A very small number of babies might be born with hep C.
Children with hep C should see a children’s health specialist. Children aged under 18 years are now able to be treated with the new hep C cures.
There is no need to tell childcare workers or other people about your child’s hep C.
For more information, contact the Department of Gastroenterology, The Children’s Hospital at Westmead on 02 9845 3999 or 7825 3997 >> or you can email them on:
SCHN-CHW-Gastroenterology@health.nsw.gov.au
Sex and hep C
If you or a regular partner have hep C, get treated and cured.
The risk of catching hep C through sex is so low that it is not classed as a sexually transmitted infection. If you are cured of your hep C, there is NO chance of passing it on – your hep C is gone.
If you and your sex partner have multiple partners, or you don’t know each other’s sexual health or hep C status, you should always practice safe sex by using condoms, dams, or gloves: when you or your partner have cuts or lesions around the genitals (e.g. herpes or other sexually transmitted infections) during anal sex (because the lining is easily damaged and broken) during menstruation and during sexual practices that may involve trauma, bleeding or broken skin.
For more information about hep C and sex, phone the
Men who have sex with men
There is an increased risk of transmission for men who have sex with men who are HIV positive. The risk is higher if one or more partners has HIV, or if the sex involves blood-to-blood contact, of if they have other STIs, or if recreational drugs are used. To reduce the risks:
use condoms and lots of lube for anal sex
wear gloves and use lots of lube for fisting use condoms on toys and change them between partners, or wash toys with hot soapy water and dry them between partners if affected by alcohol or recreational drugs, your judgement around risks will be impaired and you’ll have decreased inhibitions so take special care to avoid blood-to-blood contact.
For more information about sex and hep C or HIV, contact your local Sexual Health Clinic or call the Sexual Health Infolink 1800 451 624 >>
HIV and hep C
If you have HIV and hep C, talk to your doctor and specialist about hep C treatment. The hep C cures are just as effective if you also have HIV.
For more information, contact ACON 02 9206 2000 >> For support with living with HIV, contact Positive Life 1800 245 677 >>
What if you get hep C again? Don’t worry - you can be cured again.
Competition
It’s easy. After you’ve read the booklet, fill out this form and send it back, or go to the website link below, or phone our Hepatitis Infoline and say you want to do the reader competition.
https://forms.office.com/r/xW8uy01cYT for a ONE in 50 chance to win a $100 gift card of your choice
3. After reading this booklet, I might...
1. Reading What You Need To Know was useful for me...
call the Hepatitis Infoline or visit www.hep.org.au and ask about one of Hepatitis NSW support projects (listed in the booklet) look up a website or phone one of the services in the Alcohol & Other Drugs services (page 31) talk to someone else about hepatitis look up the Hepatitis NSW website directory for doctors and chemists I probably won’t do anything
Other
4. What is your postcode?
5. How could we make this booklet better?
8. If you want to get monthly news updates about hepatitis, please write your email address here.
6. Please describe yourself (tick as many as you want)
Person with hep C Current prisoner
Person who currently injects drugs
Aboriginal or Torres Strait Islander
Person who doesn’t usually speak English at home
Other
7. For the prize draw, what is your first name and contact phone number (or if you are currently inside, your name and MIN)?
Your feedback will help us to develop a better booklet.
Each time we receive 50 replies (with contact details) a new prize winner will be drawn.
This offer is for NSW residents only.
n Option 1: Carefully tear/cut out this page, put it in an envelope and post to: HNSW PO Box 432
DARLINGHURST NSW 1300
n Option 2: Use the online survey: https://forms.office.com/r/xW8uy01cYT
Alcohol and Other Drugs Support & Information Services
NUAA
People who inject drugs and want to access peer based info and support can call NUAA (the NSW Users & AIDS Association).
ADIS
NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Call the Alcohol & Drug Information Service (ADIS) for assistance.
FAMILY DRUG SUPPORT
FDS provides assistance to families to help them deal with drug issues in a way that strengthens family relationships.
