Hep c handbook interactive 20160726

Dave:

This booklet has been written to help you understand more about hepatitis C, an illness caused by the hepatitis C virus. The medical term for hepatitis C is HCV but it’s usually called hep C. Although the booklet has been written for people who have hep C, it may also be useful for partners, friends, family members and anyone else who wants to know more.

If anything needs more explanation or you want extra information, please talk to your doctor or health care worker. Another great way to find out more information and get support is to contact the National Hepatitis Info Line on 1800 HEPABC (1800 437 222).

There are also some other ideas for getting more information and support listed towards the end of this booklet (See the chapter ‘Advice and Support’ on p 47)

‘This booklet has some really good info about hep C - read on!’

The content of this booklet is based on information available at the time of publication. It has been produced with the guidance of the Hepatitis Australia resource advisory panel, with special thanks to Paul Harvey from Hepatitis NSW, who wrote the resource ‘What You Need to Know – A guide to Hepatitis C’, and ‘Two Hep C Questions’, from which much of the information in this booklet is based.

Thanks also to: • The staff from Hepatitis Victoria, for information obtained from their ‘Impact’ resource and for much practical support.

• Health care workers, those with lived experience of hep C and

interested community members who participated in the ‘Get Real People’ photo project (the results of which you can see in this booklet), and for participating in the focus group testing.

Special thanks to Dr Alex Thompson for clinical review of the facts contained in this booklet.

Disclaimer This booklet does not aim to replace the advice provided by a doctor or other health care worker.

If you have hep C, you should regularly see your health care worker for check-ups, information, advice and referral.

Unless otherwise stated, images of people used in this publication are not necessarily of persons with hepatitis C. First Edition – January 2016 © Hepatitis Australia 2016 Hepatitis Australia Ph: 02 62324257 Email: info@hepatitisaustralia.com Info: www.hepatitisaustralia.com Design by Zokitch Creative Studio Photographs by Mark Hopper of Hop-R Photography

National Info line: 1800 HEP ABC (1800 437 222)

Getting the most from this booklet Introducing hepatitis C

1 3

What is hepatitis?

3

What is a virus?

3

The ABC of hepatitis viruses

3

The effects of hep C

6

Will hep C make me sick?

6

Chronic (long term) illness

7

Chronic hep C outcomes

7

Symptoms of cirrhosis

7

Co-infection

8

Hep C transmission

9

Australians with chronic hep C

9

How do you get hep C?

9

Alternative access to treatment

34 34

Tattooing and body piercing

15

Monitoring treatment

During sex

16

What is meant by the terms ‘response’ and ‘cure’? 34

Blood donation

16

After treatment

35

Preventing transmission around the home

16

What if I don’t clear the virus?

36

Myths about how hep C is spread

16

Liver surgery and transplant

36

Testing and monitoring

17

Personal, relationship and family issues

37

Who should have the hep C blood test?

17

Hep C and sex

37

The different types of blood tests

18

Men and hep C

38

Informed consent for hep C testing

19

Women and hep C

39

Getting your test results

19

Transgender people and hep C

39

Other tests that your doctor might order

20

Pregnancy, babies and children

40

Living with hep C

21

Legal issues

43

Dealing with the symptoms of hep C

21

Telling other people

43

Symptoms of cirrhosis

24

Discrimination

45

Managing your health

25

Hep C in the workplace

45

Alcohol

25

Superannuation and insurance

45

Smoking

26

Job seeking and Centrelink

46

Food choices and hep C

26

Advice and Support

47

Exercise

27

Medical help

47

Managing Stress

28

Phone support and information

47

Medications and your liver

28

State and territory hepatitis organisations

47

Complementary medicine

29

Hep C peer support

47

Hep C treatment

31

Alcohol and other drugs information

48

Can hep C be cured?

31

Support for people who use illicit (illegal) drugs

49

How do I get onto treatment?

31

Support for families of people who use drugs

49

Can I still get treatment if I am injecting drugs or having OST?

31

Complementary Medicines Advice

49

Being ‘treatment-ready’

32

Assistance in dealing with poor medical service

49

What is the treatment medication?

33

Anti-discrimination agencies

50

Will I have to pay for treatment?

33

Centrelink support or problems

50

Meaning of words that you may come across What do you think of this booklet?

51

Reducing transmission

12

Injecting drug use

12

Treatment side-effects

33

Cleaning needles and syringes

13

What about pregnancy and treatment?

34

55

Lots of people who visit a doctor or health care worker may not fully understand the medical advice they are given. If we are nervous or uncomfortable it can affect how much information we remember, and sometimes health workers use difficult medical terms, or give a lot of information in a short space of time.

This booklet can be read in your own time. It will help you understand hep C, and make good decisions about your health.

We want you to: • Fully understand the different choices you have about your healthcare.

• Be involved in your healthcare decisions – so they’ll be your decisions and you’ll be keen to stick to them. If you feel like you don’t understand anything in this booklet: • Take it with you next time you visit your doctor or clinic and ask them about it (you could make a note in the back of this booklet about your question so you don’t forget what to ask).

• Phone the National Hepatitis Infoline for friendly and confidential help. The staff are usually available Monday to Friday, 9am to 5pm (in the time zone of your state). When you phone the National Info line you will be automatically

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transferred to a worker in your state or territory who has good knowledge about hep C. It is a really great way to get support and find out further information, and if you wish, to find out how to connect with others who may be in the same situation as you.

• Look on page 51 for the section that explains the meaning of words used when talking about hep C.

The National Hepatitis Info Line is 1800 HEP ABC (1800 437 222)

1

Nat & Alex:

‘If there is anything you don’t understand about hep C, ask your health care worker to explain it’s your body, your health’

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2

The word hepatitis means inflammation of the liver. The liver is a very important organ in your body – it converts the food you eat into energy and supplies the body with what it needs for life and growth.

It also helps your body get rid of alcohol and other toxic substances. There are many different things that can damage the liver and make it become inflamed, such as alcohol, drugs, and chemicals.

But another common cause of hepatitis is the hepatitis viruses (hepatitis A, B and C).

If your liver becomes damaged by a virus it may not work properly, and this can affect your health.

A virus is an extremely small organism that cannot be seen without a special microscope.

It needs to get inside host cells (such as those found in human blood).There are many different kinds of viruses.

THERE ARE A NUMBER OF HEPATITIS VIRUSES (INCLUDING A, B AND C).

IN MOST WAYS THEY ARE VERY DIFFERENT BUT THEY ALL AFFECT HUMANS AND TARGET THE LIVER.

The following table lists the key differences between the main hepatitis viruses.

The rest of the booklet will focus on hepatitis C (usually called hep C).

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3

Hep A (HAV)

What is it?

Window period (the time between infection and the illness showing up in the blood tests)

Transmitted by (this means how the virus is passed on to you)

A liver illness caused by hep A virus.

The virus makes people sick but only for 1-3 weeks.

2 weeks May take up to 7 weeks.

Food or water contaminated with sewerage.

Anything with human faeces (poo) on it that comes in contact with the mouth.

Household contact with an infected person.

Things that put people at risk

Travelling through developing countries without having been vaccinated, and where food preparation is not hygienic (hands not washed well, or cooking with unclean water). Food such as shellfish contaminated by dirty water.

Sexual contact (involving oral/anal sex) with a person with hepatitis A.

Hep B (HBV) A liver illness caused by hep B virus.

The virus affects people differently depending on your age when you get it: Most people who get hep B as an adult clear the infection.

Most people who get hep B early in life don’t clear it and may have liver problems later in life.

6 weeks (HBsAg blood test) May take up to 12 weeks.

Can pass from mother to baby at childbirth (common if baby of hep B-positive mother is not treated at birth).

Blood-to-blood contact (when someone’s blood gets into another person’s bloodstream).

Sexual contact (the hep B virus is in sexual fluids).

Not being vaccinated as a baby.

Being born to a mother who has hep B. Sharing needles or any other equipment such as water, tourniquets, spoons or filters when injecting drugs.

Tattooing or body piercing with unsterilised equipment.

Accidental injury with contaminated syringe (needle stick injury).

Medical procedures if equipment not sterilised properly.

Unprotected sex with someone who has hepatitis B.

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Hep C (HCV) A liver illness caused by hep C virus. Most people don’t clear the virus and, unless successfully treated, have the illness for life.

The illness can cause liver problems.

Over long time some people may get cirrhosis (scarring of liver) or liver cancer.

For adults: 2 weeks (PCR test) 12 weeks (antibody test) – may take up to 6 months

For babies: 8 weeks (PCR test) 18 months (antibody test) See p 18 for explanation of the type of tests and p 42 for more about testing babies.

Blood-to-blood contact (when someone’s blood gets into another person’s bloodstream).

Can pass from mother to baby during pregnancy or childbirth (not common).

Sharing needles or any other equipment such as water, tourniquets, spoons or filters when injecting drugs.

Tattooing or body piercing with unsterilised equipment.

Accidental injury with contaminated syringe (needle stick injury).

Medical procedures if clinic is not clean or equipment not sterilised properly.

Receiving blood products before February 1990 in Australia.

4

Hep A (HAV)

Hep B (HBV)

Hep C (HCV)

Feeling unwell, aches and pains, fever, nausea (feeling like you want to vomit), no appetite (don’t feel like eating), stomach pain, dark urine (wee), followed by jaundice (yellowing of eyes and sometimes skin).

Young children usually have no symptoms.

Often you don’t feel unwell, but you may get jaundice (yellow eyes and sometimes skin), dark urine (wee), fatigue (feeling very tired), stomach pain, loss of appetite (don’t feel like eating), nausea (feel like you want to vomit) and pain in bone joints.

Often you don’t feel unwell, but you may feel like you have a mild flu.

Sometimes you might get similar symptoms to hep B (see left).

Chronic Symptoms How you might feel if you don’t clear the infection (long term)

No long term infection.

Fatigue (feeling very tired), nausea (feeling like you want to vomit), muscle aches and pains, feeling uncomfortable in the stomach or jaundice (yellowing of eyes and sometimes skin).

Many people do not feel unwell.

Fatigue (feeling very tired), nausea (feeling like you want to vomit), muscle aches and pains, feeling uncomfortable in the stomach or jaundice (yellowing of eyes and sometimes skin).

Many people do not feel unwell.

Treatment (medicine)

Rest, drink plenty of water, no smoking, no alcohol until infection has passed.

There is an effective treatment for hepatitis B but it is not a cure. It is a lifelong treatment that stops the virus from damaging the liver.

There are effective treatments for hep C that have more than 90% success rate for curing the infection

Yes. It is safe and effective.

Yes. It is safe and effective.

Free vaccine for all newborn babies in Australia. An extra injection (immunoglobulin) is given to babies born to hep B-positive mothers within 12 hours of birth to help prevent transmission to the baby.

None available. The only way to stay safe against hep C is to know the risks!

Get hep A vaccination.

Wash hands after going to the toilet and before eating.

Household contacts and sexual partners of someone with hep A should have an injection of immunoglobulin (drug that gives short term protection).

Practice safer sex (for example use a condom).

Get hep B vaccination (free in some cases – ask your doctor or local hepatitis organisation).

Don’t share needles or any other equipment such as water, tourniquets, spoons or filters when injecting drugs.

Avoid backyard tattooists and piercers.

Use shops/operators that follow proper sterile procedures.

Avoid any other blood-to-blood contact with another person.

Practice safer sex (for example use a condom).

Use water-based lubricant to lower the risk of small tears to condom or blood during sex.

If you think you’ve had blood-toblood contact with someone who is hep B positive, talk to your doctor about having an injection to make sure that you don’t become infected (prophylaxis).

Acute Symptoms How you might feel at first (short term)

Vaccine

Prevention (stopping yourself from getting the virus).

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Don’t share needles or any other equipment such as water, tourniquets, spoons or filters when injecting drugs.

Avoid backyard tattooists and piercers.

Use shops that follow proper sterile procedures.

Avoid any other blood-to-blood contact with another person.

Practice safer sex if there is risk of blood-to-blood contact (anal sex, during menstruation, after menopause).

Use water-based lubricant to lower the risk of small tears to condom or blood during sex.

5

Hep C is a very slow acting virus, and you may not feel unwell for many years. The first six to twelve months of infection is called the ‘acute phase’. During this time the body’s immune system starts fighting the virus.

A small number of people may feel unwell and experience flu-like symptoms. But you may not experience any illness at all.

In one out of four people (25%), the immune system clears the virus but for most people, unless they are treated and cured, they will have a life-long (also called ‘chronic’) hep C infection.

Angus:

FOR THE REST OF THE BOOKLET, WHEN WE TALK ABOUT PEOPLE WITH HEP C, WE MEAN PEOPLE WITH CHRONIC, OR LONG TERM, HEP C INFECTION.

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’One in four people clear the virus naturally – but for most people, if they’re not treated and cured, they will have chronic hep C’ 6

Hep C infection usually involves ongoing liver inflammation. After around 20 years, many people will remain unaffected while others will have liver damage that makes them feel ill.

Over a 20 to 40-year period, continuing liver damage may result in cirrhosis (scarring of the liver).

Having cirrhosis for a long period of time may lead to liver failure or liver cancer. These serious situations will affect 5 in 100 people. (See Chronic hep C outcomes diagram).

The diagrams on this page show outcomes for untreated chronic hep C. They do not show the outcome for individual people. Things like alcohol intake, age when hep C was caught and current level of liver inflammation may all influence a person’s individual outcome. You need to seek medical advice to find out about your own situation.

If you have cirrhosis, this means that liver inflammation has led to the build-up of scar tissue in your liver. The scar tissue reduces the blood flow through the liver so that it cannot carry out its work as well as it should.

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7

The following things (called factors) increase the chance of developing cirrhosis: • Drinking alcohol • Having an unhealthy lifestyle (such as eating unhealthy food, not getting enough exercise) • Being overweight • Being older than 40 when hep C was first caught • Being male • Having hep C for a long time (20-40 years), especially if there is a high level of virus in the blood • Previous hep C treatment not working • Having another viral infection like hep B or HIV as well.

Cirrhosis is not life-threatening, but it can make you feel quite ill and increases your risk of liver failure or liver cancer.

Reversal of liver cirrhosis is possible (meaning that the damaged liver can become healthy again), depending on how scarred your liver is. Talk to your doctor or specialist about this.

The level of liver scarring can be monitored by Fibroscan® and blood tests.

Some people might need to have a liver biopsy (see p 20).

More information about cirrhosis can be found on p 24.

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If you have hep C as well as another viral infection such as HIV or hep B, you will be at greater risk of serious long-term illness.

It is very important that you keep in good contact with your doctor or specialist if you have either HIV or hep B as well as hep C, so that your health can be checked regularly and a good health care and treatment plan is worked out for you.

8

Sharing or reusing other people’s needles and syringes (fits) Very high risk Injecting drugs is the most common way that people in Australia catch hep C. Around eight out of ten people with hep C in Australia caught it this way. The highest risk comes from sharing the needle and syringe.

Sharing or reusing other people’s drug injecting equipment High risk

Hep C transmission means that the hep C virus is passed on from one person to another.

HEP C IS A VIRUS THAT LIVES IN THE BLOOD, AND IS TRANSMITTED (PASSED ON FROM ONE PERSON TO THE NEXT) WHEN INFECTED BLOOD FROM ONE PERSON GETS INTO SOMEONE ELSE’S BLOODSTREAM. THIS CAN HAPPEN IN QUITE A FEW DIFFERENT WAYS:

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Aside from needles and syringes, all equipment used to prepare the injection can spread hep C. This includes spoons, filters, water, tourniquets and swabs. Even tiny amounts of blood that cannot be seen by the naked eye can contain the virus. It can also be passed on through blood on people’s fingers or by sharing areas such as tables or benchtops where other people’s equipment is sitting.

9

Tattooing, body piercing, and other beauty procedures

Medical care in developing countries

Sexual activity

Moderate to low risk

Moderate to low risk

Low risk

Tattooing and body piercing can be a risk because they involve equipment coming into contact with blood that may be infected.

If infected equipment isn’t sterilised properly, it can spread the virus to another person.

The risk increases in situations where it might be hard to sterilise equipment properly, such as prisons and ‘backyard’ situations.

In some developing countries, the blood used for transfusions is not properly screened for hep C. Also, surgical equipment is sometimes not well sterilised, which means there’s a risk it may still have very small amounts of the hep C virus on it and can infect other people.

In Australia, the blood used for transfusions has been screened for hep C since 1990, and is very safe. But there is a low risk in Australia that some procedures involving blood may be performed by workers who do not have a good understanding of sterile procedure and infection control.

Transmission of hepatitis C through sex is unlikely – hepatitis C is not classified as a sexually transmissible infection (STI) and is not in vaginal fluids or semen. But there is a possibility of hepatitis C transmission if there are cuts or open wounds around the genital area of both people during sex. The risk becomes higher during unprotected anal sex, especially if you have problems with your immune system or if you have other STIs.

Sharing of drug snorting (sniffing) equipment

Low risk

Low risk

There is a low risk of hep C being passed on from mother to baby before or during birth, but this is not common. About 94% of babies born to hep C positive mothers will not have hep C. Fathers who are hep C-positive cannot pass the virus on to their babies either when the baby is conceived, or during pregnancy. The way the baby is born does not affect the risk either (natural birth, or by operation).

Manicures and pedicures (cleaning and filing of fingernails and toenails) also carry a possible risk of spreading the virus from one person to another through infected equipment, if it has not been properly sterilised between clients.

The risk for all of the above might increase if you have them performed in a developing country where rules about health standards may not exist, or workers may not have good knowledge about sterilisation and infection control. Also, because the rate of hepatitis virus amongst the population may be higher in developing countries, the risk of equipment coming into contact with infected blood also increases.

When people use a straw for sniffing a drug, the lining inside the nose can easily be damaged and small amounts of blood can get onto the straw. If the straw is passed to another person to use, this blood (which may have the virus in it) can get in the second person’s bloodstream if the straw damages their nasal lining as well.

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Parent to baby transmission

10

Sharing of household items

Needlestick injuries in the community

Breastfeeding

Very low risk

Very low to extremely low risk

Extremely low risk

It is very rare for hep C to be transmitted through the use of most household items, but it’s best not to share razor blades, tweezers and toothbrushes. Brushing your teeth can cause bleeding gums, so sharing your toothbrush can cause possible blood-to-blood contact. Razor blades and tweezers can also possibly lead to bloodto-blood contact between people.

A needlestick injury is accidental injury from a needle containing another person’s blood. It can happen to medical staff in hospitals or surgeries, but also to members of the public who come across used syringes that have been thrown away in public places.The chance of catching hep C this way is possible in theory, but the risk is extremely low.

Breastfeeding does not spread hep C, and the virus is not transmitted through breast milk. However, because hep C is spread by blood, if your nipples are cracked and bleeding, you should stop nursing temporarily on that breast and consult a midwife. Mothers are strongly encouraged to breastfeed whether or not they have hep C.

Other practices that involve blood Traditional practices using razor blades, knives or needles can be a risk for spreading the hep C virus. ‘Blood brother’ rituals involve direct blood-to-blood contact and therefore carry a very high risk of infection if one person has the hep C virus.

Sharing instruments for branding or selfharming also carry a high risk of blood-toblood contact.

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11

Jen:

‘Always use a new needle and syringe every single time you inject drugs. And don’t share any equipment with your mates – that means no syringes, needles, spoons, swabs, tourniquet or water!’

• Wash hands before and after injecting, using soapy water.

The hep C virus is commonly transmitted through injecting drug use. Anyone who has ever shared injecting equipment may have hep C. It doesn’t matter what was injected: heroin, methadone, speed or steroids.

Many people have also got hep C from trying drugs just once or twice, even if it was decades ago.

• Use a sterile needle and syringe every time.

Safer using helps prevent hep C transmission

• Immediately after using, dispose of needles and syringes in sharps containers.

It’s important to inject drugs as safely as possible to avoid catching hep C or passing it on to others.

If you inject drugs, think about the following tips and wherever possible, share the information with other people who inject drugs to help everyone stay healthy.

• Don’t share any equipment (e.g. spoons, swabs, tourniquet, water) when preparing and injecting drugs.

• Wipe down all surfaces where the injection is being prepared with detergent and water.

• Never be injected by someone or help someone else inject. This can transmit blood from fingertips to the injection site.

Australia has a Needle and Syringe Program (NSP), so that health centres, clinics and pharmacies throughout the country can provide sterile injecting equipment free of charge. Ring the National Hepatitis Info Line on 1800 HEP ABC (1800 437 222) or contact your local state or territory hepatitis organisation to find out where the nearest NSP is to you.

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12

The best advice is to use a new, sterile needle and syringe every time you inject, and never share injecting equipment. This is the only way to be sure you are not sharing blood. When this is not possible, people sometimes re-use needles and syringes. In this case it’s important to clean needles, syringes and caps with water and bleach. For information on how to properly clean needles and syringes contact the National Hepatitis Info Line, AIVL (Australian Injecting and Illicit Drugs Users League) or the drug user organisation in your state or territory (See the chapter ‘Advice and Support’ on p 49).

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13

1

2 Clean Water

Clean Water

Clean Water

Cap of Bleach

Get 2 clean cups Fill them with clean water (do not use boiling water – it can make the blood clot) Pour out a capful of thin bleach

Draw up water from the first cup (Fill the syringe completely to rinse and clean it) Empty the syringe into the sink

4

3

Clean Water

Cap of Bleach

Draw up the bleach (Make sure the outside of the needle gets dipped in the bleach to kill any virus that is on the outside) Empty the syringe into the sink

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Draw up water from the second cup Empty the syringe into the sink Carefully put the cap back on the syringe (Rinse the syringe cap in bleach and water too, if you had it on the used needle before it was cleaned) Pour the water from both cups and the bleach down the sink

14

If you get a tattoo or body piercing, make sure you always go to a professional, registered studio. All registered studios are required by law to operate according to health department guidelines. Registered premises should display their certificate of registration.

Most importantly, you should check that the worker uses ‘standard infection control practices’ – meaning, that they can explain to you how they stop infections spreading from one customer to another. You can also ask your tattooist whether they have completed ‘certification in cross contamination procedure’ (this is law in Queensland but nowhere else in Australia).

John:

’Always have your tattoo or body piercing done at a professional, registered studio’

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When choosing a tattoo or body piercing studio, look for clean, hygienic, well lit premises. Ask the worker whether they use new needles each time and if they reuse needles, ask how they are sterilised.

Registered studios will have professional sterilising machines called autoclaves.

Ideally, you should be able to watch someone else being tattooed. Whilst watching, you can check whether: • New disposable gloves are worn for each client • Tattooing and piercing utensils come from sterile containers or bags • The tattooist opens singleuse sterile equipment in front of clients • The tattooist uses small separate containers of ink for each client, rather than dipping into one big container that is used for many clients • The tattooist explains the tattooing process to each of their customers.

15

If you decide to get a tattoo, body piercing, or other beauty procedure such as manicure or pedicure overseas in a developing country, it is especially important to check the studio or salon carefully for all the things mentioned above, as there may be no rules in that country to safeguard your health. The staff may not have had good training about infection control or understand the need to properly sterilise equipment to kill all germs and viruses. The best rule is, ‘if in doubt, don’t do it’!

It is potentially very risky to undertake tattooing or body piercing procedures at home or with your friends because of the risk of blood-to-blood contact, and the importance of understanding about infection control. Professional autoclave or other sterilising equipment that will kill all germs and viruses is essential – not just soap and water.

If there is a risk of blood-to-blood contact during sex, or if there is a risk of you or your partner having a sexually transmitted infection (STI), it is recommended you use condoms and water-based lubricant.

the virus to other people. Even after clearing the virus people cannot donate blood, because they continue to carry antibodies for many years. For more information see the ‘After Treatment’ section on p 35.’

It’s a good idea to carry some spare bandaids with you when outside the home so that you can cover up any accidental cuts straight away.

There are not many things that people living with hep C need to do differently around the home. Simply living with, or being around a person with hep C is not a risk for passing on the virus. However, if you have hep C, care should be taken not to share your razors, toothbrushes, tweezers and other sharp grooming tools because they could carry small amounts of your blood.

Hep C is not passed on through touching, kissing or hugging someone else, or by sneezing or coughing.It is not spread by sharing food, crockery, cutlery, towels, bathrooms or toilets. There is no need to wash your clothes separately. Insects like mosquitoes or fleas do not transmit hep C.

If you get a cut or a graze, cover it straight away with a bandaid or dressing.

This will lessen the risk of your blood coming into contact with someone else’s blood if they have a cut, sore or graze too. Any blood spills on surfaces such as bench tops can be cleaned up with bleach and a disposable cloth. Place old dressings and any cloths used to wipe blood into a plastic bag before putting in the garbage bin.

People who have hep C cannot donate blood because this would pass on

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16

Jack:

’If you’ve ever injected drugs or steroids, or think there’s any risk that your blood has come into contact with someone else’s blood, ask your doctor for a test’

• People who have ever injected drugs or steroids • People who have ever been to prison • People who have had blood transfusions, blood products or an organ transplant in Australia before February 1990 • People who have a tattoo or body piercing • People who have emigrated from countries where hep C is widespread • Aboriginal and Torres Strait Islander peoples • Men who have sex with men • Anyone born to a mother who was hep C-positive during her pregnancy • People who have had a needlestick injury • People who don’t fit into any of the above categories, but have abnormal liver function tests or who are experiencing hep C symptoms.

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17

Hep C antibody tests Doctors test for hep C by taking a sample of your blood and carrying out hep C antibody tests. Antibodies are your body’s reaction to a virus, not the virus itself.

The tests show whether or not you have ever had hep C, but cannot tell if you have developed a chronic infection. This means that when antibodies are found, there is still a chance that you may have cleared the virus – one in four people (25%) clear the virus naturally. To find out if it is still there, a more advanced test is needed (the PCR test -see below).

Hep C antibody tests are free if you take your Medicare card to a doctor who bulk bills.

It can take up to 12 weeks from the time you catch hep C until your body starts producing antibodies. This is called the ‘window period’ and it is during this time that results may be incorrect.

People who clear their hep C naturally within the early ‘acute’ phase or through successful treatment will continue to carry hep C antibodies. But it is very important to remember if you have

PCR viral load test cleared the virus (either naturally or through treatment) it does not protect you against further infection.

PCR tests These are tests that look for the actual hep C virus (the PCR stands for polymerase chain reaction). The window period for the PCR test (the time following infection before the test will work properly) is usually just two weeks.

Sometimes called the quantitative test, this test measures the amount of virus in your blood. It is often used to help people decide when to have hep C treatment. High virus levels in the blood over a long period of time can increase the risk of developing serious liver disease.

You can have high levels of virus in your blood and still feel well. So if your virus levels stay high, it is best to think about having treatment sooner rather than later.

There are three types of PCR test and they provide different information about your hep C infection. The tests are available free through Medicare (although there is a limit as to how many tests per year will receive a rebate).

PCR viral genotype test

PCR viral detection test

Although people usually talk about hep C as if it were a single virus, there are six different main genotypes. All hep C genotypes affect the liver in the same way, but different treatment drugs work better for some genotypes than others.

Sometimes called the qualitative test, the PCR viral detection test is used to check for the presence of the hep C virus in the blood. This will inform whether you have cleared the virus naturally or else successfully got rid of the virus through treatment.

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Hep C genotypes are spread around the world in different patterns. In Australia, around:

PCR genotype tests can determine the genotype (strain) of hep C that you have. Knowing your genotype is important if you are considering hep C antiviral treatment (see p 31).

18

IL28b gene testing Those whose treatment still needs to include interferon, may decide to undergo another test.

The hep C IL28b gene test is a simple blood test that looks at your genetic makeup and shows how likely you are to respond to interferon-based treatments (see p 43 for more information about interferon). This could be useful information if you are wondering whether to go on treatment. Because new treatments for hep C mean practically everyone has a similar chance of success, the IL28b tests are becoming less important.

The test is not always free so talk to your doctor to find out more or contact the National Hepatitis Info Line.

Liver function testing (LFTs) If your liver cells are being damaged, this will show up in liver function blood tests. The tests provide a rough indication of possible liver damage.

If you have hep C, your doctor will recommend that liver function tests be repeated monthly, six-monthly or every year, depending on your condition.

Liver function tests are not perfect.

Some people may have abnormal test results but have minimal liver damage

while others may have liver damage even when their tests are normal. Also, abnormal liver function test results may be caused by medical conditions other than hep C.

• Information about the testing process (including the window period), how results are provided and the government notification process

Your doctor may recommend a Fibroscan® or liver biopsy if your liver function readings stay high for a long time, if they rise and fall dramatically or if readings don’t seem to match with how you feel.

• Whether you have support and can cope while waiting for the test results

‘Informed consent’ means that you agree to have the hep C test because you understand about the test, you know why you’re having it, and you understand what the result will mean for you.

Your doctor should discuss this before you decide whether to have the hep C test. This discussion should include the following topics: • Your level of risk (of having caught hep C) • How to reduce your future risk of catching hep C • Whether tests for other blood borne viruses (e.g. hep B or HIV) should also be done • Your rights around confidentiality and privacy

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• What a negative or positive result might mean for you • Whether you understand all the necessary information about what a test means

• Whether you give informed consent for the test to be done.

Your doctor is responsible for making sure that your test results are fully explained, and for answering any questions that you might have about your test result.

If the result is negative (you do not have hep C) your results may be given via the phone or in person.

The discussion should focus on how you can avoid future risk of catching hep C.

Monica:

’Your doctor or health care worker should explain all about hep C tests before you give blood for the test. You need to understand what it’s all about so that you can give ‘informed consent’ 19

If the result is positive (you have possibly caught hep C), your results should be given in person at the doctor’s surgery. This discussion should include: • Having a PCR blood test to confirm if you cleared the virus within your initial 6-month acute infection stage or if you still have hep C (see p 18).

• Your immediate needs and support.

• Information about safer behaviours to help you avoid passing on your hep C to others.

• The limited legal requirement to tell others about your hep C (see p 43).

• How to manage the possible emotional reaction to your diagnosis.

• Your options for drug treatment and medical management.

• Your options for ongoing counselling and treatment (if required).

• Whether or not to use complementary therapies to help manage your hep C (see p 29).

This is a fibroscan machine.

It’s a simple test - and it doesn’t hurt!

Fibroscan®

Liver biopsy

A Fibroscan® machine uses advanced ultrasound technology to assess the stiffness of your liver (called fibrosis). It measures the speed of a vibration wave (a pulse) that is made by a probe on your lower chest (over where your liver lies). You hardly notice the pulse and about 10 pulses are measured.

The scan takes only 5-10 minutes and does not involve needles – the probe sits on the outside of your skin.

In some cases, a liver biopsy may be suggested by your specialist. This involves taking a small sample of your liver that is examined under a microscope.

Biopsies give the most accurate report on the condition of your liver.

The stiffer your liver, the more likely that your liver has fibrosis or cirrhosis.

After the test your liver is given a score:

It can be difficult to decide whether to have a biopsy or not.

It is a bigger procedure than the Fibroscan®, and there is a small risk of internal bleeding. Many people don’t need to have a liver biopsy. For others, a biopsy can provide very useful information.

The best person to speak to about whether to have a biopsy is your doctor or hep C specialist.

• Advice on an ongoing management plan to monitor your hep C.

If your hep C antibody test comes back positive but you don’t think you have ever been at risk of catching hep C, a PCR test can confirm the result. If you are not offered this test, it is reasonable for you to ask your doctor for the test.

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You might not feel sick from your hep C, although, many people do start to feel sick after 10-15 years. Things such as whether you are male or female, your health history, eating habits, lifestyle, age, stress levels, and alcohol and drug intake (whether prescribed or illicit) all affect how you might experience living with hep C. If possible it’s important to regularly stay in touch with a medical professional who has good knowledge about hep C. Sometimes symptoms of hep C can mask the symptoms of other health problems, or you may keep feeling well even though your liver is becoming more damaged.

Prescription or over-the-counter medications are often suggested to help with some symptoms. Always ask your doctor’s advice and follow the medication directions because some medications can hurt your liver.

Following are some of the common symptoms that you may experience.

Symptoms of illness don’t always get worse and they sometimes appear in clusters (several at once). For more information on how to manage the symptoms see ‘Managing your Health’ (p 25).

Fatigue and sleep problems Many people with hep C will feel fatigued at some stage (very tired and lacking in energy).

Fatigue can be caused by other things (e.g. stress, a busy lifestyle or other health conditions), so if you are affected by it, you should tell your doctor.

Sleep problems include difficulty falling asleep, waking up a lot, or sleeping too much (eight hours sleep per day is generally enough for an adult). Sleep problems can affect your quality of life by making you feel irritable or fatigued.

• Exercise and healthy foods can help with fatigue and sleep problems.

• Short naps during the day may seem to help but can cause sleep difficulties at night. A good idea is to set specific sleep times to regulate your body clock.

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• Try to avoid fitting too much into your day and don’t exercise just before sleeping.

On days when you feel better, do extra tasks like cooking food in batches to freeze and eat later.

• Eating small meals more often may give you more energy.

• Avoid caffeine in the late afternoon and evening. Try jasmine tea, chamomile tea or warm milk before going to bed, or lavender scent in your bedroom (all these herbs are safe for the liver). Wearing ear plugs and eye masks at night can reduce distractions and help you get a better sleep.

• If the above tips aren’t helping you to get enough sleep, discuss with your doctor whether sedatives might be an option, although it’s best to remember that all tablets put extra strain on your liver.

Flu-like symptoms Flu-like symptoms can come and go. They usually last for a week or less, but can occasionally last longer. They include fever, chills, headaches, tiredness and muscle or joint pain. Because these symptoms can mask other medical problems, speak to your doctor about them.

• Mild physical activity increases blood flow to joints and muscles and can reduce stiffness.

Heat packs, warm baths and massage may also help.

• Fever and muscle ache can be treated with paracetamol. (Care should be taken with the amount of paracetamol taken in 24 hours – see ‘Analgesics’ on p 28).

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Mood swings, anxiety and depression The liver processes hormones, so it’s not uncommon for people with hepatitis C to experience higher than normal mood swings.

Other symptoms such as anxiety, feelings of hopelessness or helplessness, irritability, lack of interest in usual activities, and periods of sadness may also occur. Because these feelings can also be caused by other health problems, it’s important to talk to your doctor about them.

• Try counselling and self-help books.

• Join a support group where you can meet other people with similar experiences to you. Contact your state or territory hepatitis organisation to find out where the nearest support group is to you (see p 47).

• Stay in touch with friends or family, or try joining a social group where you have the company or other people.

• Relaxation activities, and daily exercise, such as walking, swimming or massage can help lift your mood.

• Healthy food and good amounts of sleep can really help with your mental health and wellbeing.

• If the above tips aren’t helping you, discuss with your doctor whether medication for anxiety or depression might be an option. As with sleeping tablets, these medications put extra strain on your liver, and may not be advised.

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Natalia & Marina: ’Getting support from other people can really help deal with low feelings’

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For some people it may become difficult to think clearly and concentrate. You may struggle to find words you want to say or may just feel mentally tired. Brain fog can come and go and can be linked to depression and anxiety. It can be caused by other medical problems so speak to your doctor about it.

• Make lists and notes about important things that you need to remember.

• Give yourself more time to complete tasks.

• Talk to your doctor or naturopath about vitamin supplements that may improve memory and concentration.

• Talk to someone you trust before making major decisions.

Liver pain or discomfort

Hep C can make people feel sick in the stomach (nausea), which can affect appetite. Although there is usually no vomiting it can be very uncomfortable.

• Try avoiding large or high-fat meals for a period of time to see if this helps.

• If cooking smells make you feel ill, avoid them by microwaving previously prepared and frozen meals.

• Vitamin B6 may help to reduce nausea. Herbal remedies such as slippery elm tablets, chamomile or peppermint tea may also help (these herbs don’t harm the liver). Ginger can settle the stomach so try fresh ginger with meals, ginger tablets, ginger beer or ginger tea.

• Eat bitter foods (like olives and rocket) before main meals to improve digestion.

Hep C can cause pain or soreness in the abdominal (stomach) area on the right hand side just below the ribs (this is where the liver is).

Speak to your doctor as other medical problems may be causing the pain.

• If necessary, speak with a pharmacist or your doctor about managing the itching with over-thecounter or prescription medications.

Dry eyes Hep C can cause dry eyes. This may be due to inflammation of the glands that produce tears therefore: • Try using eye ointments or eye drops.

Dry mouth and mouth ulcers Hep C infection can cause a dry mouth. This can lead to bad breath, tooth decay, cracked lips, and a sore mouth and throat. It can also cause difficulty with eating and swallowing, mouth ulcers and tooth sensitivity. The following actions should help:

• If you drink alcohol regularly, try not drinking alcohol for a while to see if this helps.

Feeling sick, poor appetite and indigestion

• Bathe the affected skin in salty water. Keep the skin cool, avoid hot showers or baths, try to reduce sweating and reduce exposing your skin to the sun. Avoid scratching the skin as scratching will increase the itchiness.

• Avoid smoke, direct wind and air conditioning.

• Using a heat pack over the liver, particularly at night, may help.

• Paracetamol may help (see further information under ‘Analgesics – p 28).

• Avoid highly perfumed soaps and shampoos.

A range of soap free moisturisers and shower washes are available that can help reduce dryness and lessen skin irritation. Look for products that contain sorbolene or oatmeal.

• Probiotics such as acidophilus yoghurt can improve digestive health.

• Avoid drinking fluids during meals and do not lie down within 30 minutes of eating.

Skin rashes and itchy skin With hep C, skin rashes and complaints may come and go. They may include itchiness, blisters, white spots, tightened skin, spider web patterns and purple patches. They can occur on the palms of hands, soles of the feet, general skin areas and inside the mouth.

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• Visit your dentist twice a year for a routine checkup.

• Avoid hot or spicy foods, which can irritate a dry mouth. Choose soft, mashed or minced foods if eating is painful.

• Maintain good mouth hygiene with regular brushing and flossing, especially after meals and before bed.

Rinsing the mouth with salty water and gargling with a mild mouthwash can help.

• Try using lip balm.

• Keep the mouth moist by sipping water regularly.

• Chewing sugar-free gum can stimulate saliva.

• Infant teething gels may provide some relief from ulcers.

• Try products that are especially designed to ease the discomfort of dry mouth (these include mouthwash, toothpaste, moisturiser gel and chewing gum).

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Diabetes Type 2 diabetes (non-insulin dependent) is more common among people with hep C than among the general population. It can lead to nerve damage and disease of the kidneys and heart, as well as eye disorders, stroke and serious skin ulcers.

Much of the management of type 2 diabetes is related to diet and this makes it especially important that you avoid overuse of sugars, avoid becoming overweight and stay as fit as possible.

Speak to your doctor or specialist about blood tests to see if you are at risk.

Other less common symptoms of hep C Hep C can be linked to other health problems including blood, kidney and skin conditions, and disorders of the lymph and nervous systems. Speak to your doctor or specialist for more information.

The build-up of scar tissue affects blood flow through the liver, and over time can cause serious health issues. Apart from the symptoms listed above, a person with cirrhosis may experience the following: • Weight loss and/or loss of muscle mass • Tenderness over the liver area • Small spider-like blood vessels on the chest, back or arms (called spider naevi) • Red blotches on the palms of the hands • Thick, square fingertips (called ‘clubbing’) • Fluid around the abdomen (stomach) and ankles • Enlarged breasts and shrunken testes in men • Loss of menstrual periods in women

• Lower tolerance to alcohol and drugs, and higher sensitivity to prescription medicines • Thinning of the bones, bone fractures • Jaundice – yellowing of the whites of the eyes and the skin, dark urine • Easy bruising.

Bleeding varices When blood can’t flow through the liver due to scarring, blood pressure in the vein that delivers blood to the liver rises – this is called portal hypertension. As the pressure keeps building up, your blood wants to bypass the liver. Around the lower end of the food pipe (oesophagus) small veins (varices) become puffed up with blood, and they can bleed easily.

Your liver specialist may arrange for a screening test called an endoscopy, where a thin tube is inserted into the mouth and down the food pipe to look for swollen veins. If varices are found they can be treated, and medications can be taken to help reduce the high pressure.

The first sign of bleeding varices may be black faeces (poo) or blood coloured vomit. If this happens it is very important to seek medical attention without delay.

Risk of bleeding Normally your liver makes blood products that help your blood to clot, for example, when you cut yourself or have an operation. When you have cirrhosis, the liver can’t make these blood products properly, so there is increased risk of bleeding that won’t stop easily.

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To help with this your liver specialist may give you medicine, or blood products that help your blood to clot.

Ascites and oedema Ascites is caused by portal hypertension (see bleeding varices). Fluid leaks into the abdominal cavity (stomach area), making it swell up.

Oedema is swelling in the legs and ankles, and is quite common in cirrhosis.

Your health care team will talk about ways to manage ascites and oedema. An important step is to reduce salt intake in food. One of the big risks with having ascites is that infections can occur. These should be treated straight away with antibiotics, otherwise your health can quickly get a lot worse. If you have ascites and develop sudden fever, nausea, vomiting or stomach pain, you should seek urgent medical attention.

Hepatic encephalopathy Cirrhosis can slow down the liver’s ability to get rid of waste products from the blood. They can build up in the bloodstream and harm the nervous system. This condition is called hepatic encephalopathy. Many people with cirrhosis experience repeated episodes of hepatic encephalopathy, which includes symptoms such as disturbed sleep patterns, difficulty concentrating, bizarre behaviour which is out of character, or becoming increasingly sleepy and hard to wake. It is important to seek medical attention straight away. It is also important that family and friends know about the early signs of an episode so that they can assist with getting help if needed. Your liver specialist can talk to you about effective treatments that will help prevent episodes of encephalopathy.

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Making lifestyle changes can reduce hep C’s impact on your quality of life.

These changes include stopping or reducing how much alcohol you drink, stopping or cutting down on smoking, eating healthy food, exercising sensibly, managing stress, and getting enough rest.

Your doctor will probably suggest ongoing checks of your liver function (see p 19), vaccinations for hep A and hep B (p 29), and may also suggest hep C treatment (p 31).

The unfortunate truth is that alcohol and your liver are not friends and this is especially the case if you have hep C. Many studies have been conducted and results show that people who drink alcohol, even a small amount, have increased levels of the hep C virus in their body. Alcohol causes the hep C virus to multiply in the liver by increasing the activity of a protein that triggers the virus to replicate (make new copies of itself). High virus levels (called the viral load) can speed up the progression of the hep C infection and increase your risk of developing serious liver disease.

Alcohol also lowers the immune system, and makes treatment less effective.

Alex:

’It’s true - alcohol and your liver are not friends! If you find it hard to stop drinking, check out the tips opposite to see if they might help you cut down’

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For some people, stopping or slowing down alcohol intake can be one of the most difficult lifestyle adjustments to make, but it’s also one of the most important. If this is the case for you, try to reduce your alcohol intake as much as possible. The following tips may be helpful: • Have regular alcohol-free days • Try low alcohol drinks • Follow each alcoholic drink with several non-alcoholic drinks • Avoid places where there is pressure to drink • Avoid drinking in rounds (having turns at buying everyone’s drinks) • Try waiting a while after finishing a drink before having another • If you have difficulty cutting down your alcohol intake, seek advice from your doctor or the Alcohol & Drug Information Service in your state or territory (see p 48).

It is well known that smoking cigarettes is bad for your health. For people with hep C it can put even more stress on the liver because it increases stiffness (fibrosis).

Daily use of marijuana is also associated with liver damage. If you smoke either tobacco or pot, the best thing to do is give up if possible, or cut down how much you smoke.

For help with quitting tobacco call Quitline on 137848 (national number) or check out www.quit.org.au

For help with quitting marijuana seek advice from your doctor or the Alcohol & Drug Information Service in your state or territory (see p 48).

Staying as healthy as possible will help you cope better with hep C. Eating a wide variety of food in the right balance is important for your body. The following advice about food has been developed by dietitians who work with people who have hep C.

fruit every day (1/2 cup tinned fruit or 1 medium sized piece of fruit like an apple or banana). Try to add fresh vegetables and fruit to your meals whenever possible.

Fats Unfortunately, eating too much fat is common among Australians. It puts us at greater risk of getting heart disease and diabetes and of becoming overweight.

Because of this, people are generally advised to eat less fat.

Avoid strict and/or cleansing diets as there is little evidence to support them. The bottom line is that if you don’t have serious liver damage (such as cirrhosis) there are no particular foods that you should seek or avoid because of your hep C. If you do have serious liver damage it is best to get dietary advice from your specialist, doctor, or dietitian, as some conditions require careful choices of food and fluid.

Fresh vegetables and fruit It is recommended that all Australians eat 5 serves of vegetables per day (one serve = 1/2 cup of cooked vegetables or one cup of uncooked vegetables). And it’s also recommended that we eat 2 serves of

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©Copyright Nutrition Australia inc. 2015 26

If you have chronic hep C you may find that meals high in fat make you feel unwell. In this case it’s best to avoid fatty food such as takeaway chips, pizza and burgers. Meals high in fat make the liver work harder to digest your food, but you shouldn’t cut out all fats and oils because some are needed by your body to make hormones, and for cells to function properly.

Unsaturated fats are a good type of fat to eat (see the pyramid on page 26). Also, try eating reduced-fat dairy products. Buy fat-trimmed, lean meats and aviod processed foods that are high in saturated fat or trans-fat (such as pizza, salami, sausage, meat pies, pasties, dim sims or battered fish and chips).

There is no scientific evidence suggesting people with hep C have problems eating red meat. In small servings with the fat removed, red meat is a very useful food to include in a balanced diet. It is a valuable source of iron and B group vitamins.

Shellfish and fish Shellfish and fish contain ‘good’ fats (called omega-3 fats), and are also a good source of protein (like red meat and chicken with the fat cut out).

Salt High salt intake can increase your blood pressure and your risk of heart disease and stroke. Most of our salt intake (about 75%) comes from processed foods and it is worth trying low-salt or salt-reduced varieties of these foods. Also try to use less salt in your cooking and on the food you eat. People with advanced liver disease will need to avoid salt all together, even in small amounts.

Sugars Sugars can give you energy but it is better to get your energy from foods like whole grains, meats, fruits, cereals and vegetables. Many pre-packaged food products have ‘hidden’ sugar added to them so if you choose to buy them, try cutting down your sugar in other ways, for instance in tea and coffee, or on cereal.

You should avoid eating too much sugar or becoming overweight, both of which increase your risk of developing type 2 diabetes.

Dairy foods (milk products) Although dairy foods can contain high levels of saturated fats, they are excellent sources of other nutrients essential for health. It is hard to get enough calcium if you exclude milk products from your diet so try lower-fat dairy products instead of full fat.

Food colours and preservatives There is no scientific evidence to suggest people with hep C have particular problems with artificial colours or preservatives in foods.

Coffee, tea and caffeine Caffeine in coffee and tea can increase your alertness. There is no published evidence suggesting that tea, coffee or caffeine-containing drinks consumed in moderation cause particular problems for people with hep C. In fact coffee has been shown in some research to be a preventative for liver cancer. Be mindful about not drinking coffee late in the day so it does not affect your sleep.

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Herbal teas such as peppermint, ginger, chamomile or dandelion can help with nausea, bloating, and difficulty with sleeping.

Other drinks Up to 8 glasses of fluid a day is recommended, unless you have severe liver damage, in which case you may need to restrict your intake of fluid.

Fresh water is the best drink for the body. Tap water is good quality in most places of Australia, so there is no need to buy bottled water. Fresh fruit and vegetable juices are better for you than other sweet drinks such as cordial or soft drinks, but they can still be high in sugars, so best to drink them in moderation.

Exercise is important for both physical and mental health when living with hep C. It can help improve your mood and relax tension, along with keeping a healthy body weight. Some people with hep C may feel tired and generally unwell which can make exercising difficult, but it’s important to try and get at least 30 minutes of moderate exercise on most, or all days of the week, unless your doctor advises against it. ‘Moderate’ exercise is doing something that makes you breathe a bit harder, and increases your heart rate, but doesn’t stop you from talking while you are doing it. Good examples of moderate exercise are gentle bike riding, swimming and brisk walking. It’s OK to break the 30 minutes up into 10 or 15 minute chunks throughout the day.

Other ideas for fitting exercise into your day might be walking up stairs instead of the escalator or lift, doing a bit of gardening, or walking to the local shops instead of driving.

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Many people with hep C find that managing stress helps to improve their overall health. Long periods of stress can lower the body’s immune system and lead to a flare-up in hep C symptoms. If you can reduce your stress levels, it can help you to feel calmer, more in control of your life, and more comfortable physically and mentally. Activities like yoga, swimming, meditation, massage, acupuncture, or taking up a hobby, may all help to reduce stress. Getting enough sleep every night is important for managing stress.

Talking to someone about your problems can also help with stress. If there are no family members or friends that you feel comfortable talking to, you can ring the National Hepatitis Info Line on 1800 HEP ABC (1800 437 222) for advice about support groups in your area, or other ideas that they may have to help you with stress.

It is important to speak to your doctor about any prescription or over-the-counter medications that you are taking, and always follow the directions on the packet or bottle. This is especially important if you have serious liver disease (e.g. cirrhosis).

Analgesics (pain killers) Paracetamol is the safest analgesic (pain killer) for simple pain relief if you have hep C. You should never have more than eight 500 mg tablets over 24 hours (2 tabs every 6 hours). However, if you drink lots of alcohol, or take medications that compete with paracetamol elimination, or haven’t been able to eat for several days, you should not take more than four 500 mg tablets every 24 hours.

You should also stick to this lower daily dose if you take paracetamol on a regular basis (e.g. for arthritis). Other over-the-counter pain killers such as aspirin and ibuprofen are not generally recommended for use for people with hep C. For more information, speak to your doctor or health care professional.

Kate:

‘Meditation and yoga can be really helpful in managing stress’

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How do I choose a therapist?

Vitamin and mineral tablets Illness can increase your body’s need for vitamins and minerals but if you are eating well you should be getting enough from your food intake. Care should be taken not to exceed the recommended dose of any tablet as this may be harmful. Vitamin and mineral supplements may be useful if your appetite is poor. Good quality Vitamin B and omega 3 can help with energy and memory. It’s best to avoid vitamin A as large doses or long term use is associated with abnormal liver function tests and increased fibrosis (stiffness of the liver). It is important to let your doctor or other health professionals know about any vitamins or minerals that you are taking.

Vaccinations for hep A and B If you already have hep C and then catch hep A or hep B, you may develop serious liver damage. If blood tests show you do not already have an immunity to hep A or hep B, you are advised to be vaccinated. Speak to your doctor about this.

If you decide to use complementary medicines, it is very important to keep seeing your doctor and talk about any complementary medicine that you plan to use.

Complementary medicine includes therapies that are not usually included in current western medical practice.

It is sometimes called natural,herbal or alternative medicine. It includes traditional Chinese medicine, naturopathy, herbalism, and acupuncture. It also includes the use of vitamins and minerals.

Alternative therapies will not cure hep C, but may assist with relieving symptoms and help with liver repair following treatment with Western medicines.

Some reasons why people living with hep C choose complementary and alternative medicines include:

Before you start complementary medicine, think about the results you want.

• Do you want to reduce your stress?

• Are you seeking pain relief?

• Are you looking to reduce the sideeffects of hep C or improve general wellbeing? Do you need more energy?

• Do you want to boost your immune system?

• Are you seeking support for anxiety or depression?

It is important to choose a complementary therapist who is registered with a professional body.

It is also important that they know about hep C and have experience in working with hep C and other chronic liver diseases. In making your choice, ask therapists: • What experience have they had in treating hepatitis C?

• Wanting to improve quality of life by relieving symptoms of hepatitis C

• What are the potential benefits and risks of their therapy?

• Cultural background and family influences

• How many treatment sessions are required?

• Dissatisfaction with Western medicine approaches to health care.

• Would their therapy have any impact on hep C antiviral treatment (see p 31), or treatments for other medical conditions?

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• What are all the likely financial costs?

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If possible, check with other people who have also received therapy from the practitioner before you make your decision.

How much do complementary therapies cost?

Costs can vary between therapists. Some health insurance companies often provide rebates on natural health therapists registered with professional bodies. Medicare rebates are sometimes available for registered complementary therapies.

Herbal remedies You should only take herbal medicines under the guidance of a qualified herbalist or naturopath who is monitoring your progress, and they should be informed that you have a liver problem. You should also let your doctor know if you are using herbal medicines so they are aware of everything you are taking to manage your hep C. Milk thistle, burdock root and dandelion are commonly used for liver health.

Some herbs should be avoided by people living with hep C as they are very harmful to the liver.

Skullcap and valerian (often found in herbal sleep blends) black cohosh, and bayberry (found in some liver detox tablets or teas) are examples of herbs to be avoided.

The Australian Therapeutic Goods Administration (TGA) has standards for herbal preparations. To check on whether a preparation has been registered by the TGA for use in Australia, phone them or visit their website (see p 49).

Lindy: ’Eating healthy foods is a great natural way to boost your immune system and to help you fight the hep C virus’ ---------------------------------------------------------------------------------------------------------------

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The good news is yes, hep C can be cured for more people than ever before. New medicines are effective in treating and curing hep C in more than 90% of people. The new medicines, known as direct-acting antivirals (DAAs) are more effective and have less side-effects. The number of weeks that you need to be on treatment has also reduced and this is likely to improve even further as more new drugs become available.

For the very latest information about the newest treatment options, speak to your doctor, become a member of your local hepatitis organisation or phone the National Hepatitis Info Line on 1800 437 222. You can also visit the Hepatitis Australia website: www.hepatitisaustralia.com/hepatitis-cfacts/treatment-for-hep-c

Getting treatment for hep C is now much simpler. All you need to do is talk to your general practitioner (GP). Your GP will need to do some tests to help decide which medicines will work best for you. If you have cirrhosis (liver scarring), or there are other conditions affecting your liver, you may be referred to a liver specialist before starting treatment. If you go to a liver clinic at the hospital, you will be treated as an outpatient and won’t need to stay overnight.

For most people, medicines for treating hep C are available through your local pharmacy/chemist. However, if you are

seeing a liver specialist, you should check if your prescription needs to be filled at the hospital pharmacy or can be filled at your local chemist. For more information on how to get onto treatment you can contact the National Hepatitis Info Line on 1800 437 222.

Opioid substitution therapy (OST) helps people deal with drug dependence that is related to heroin, morphine, oxycodone among others. It involves giving people a drug substitute; usually methadone or buprenorphine (bupe). If you are on methadone or bupe, or you are injecting drugs, it generally means you can still access treatment for hep C. In some states, the treatment is available for you at OST clinics, and also at hospital liver clinics. The success rate for treatment for those who are on OST or injecting drugs is similar to those who are not, and hep C drugs do not interfere with the effectiveness of methadone or bupe.

Reinfection can occur after being cured if you are re-exposed to the hep C virus. Concern about reinfection should not stop you from accessing treatment, but it is important that if you do inject, you do so safely, with sterile equipment. Some OST clinics have peer support workers who are a good source of information and support. For more information, contact the National Hepatitis Info Line or the drug user organisation in your state or territory (see ‘Advice and Support’ on on p 49).

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The treatment experience is different for everyone.

The new medicines now used to treat most people have very few side-effects, and most people will be able to stick to a normal daily routine. The exact combinations of medicines to be taken will depend on a number of things, such as whether you have cirrhosis and the genotype (strain) of hep C you have.

For some people, with less common genotypes of hep C, it may be necessary to take the new medicines in combination with the older ones, including interferon and ribavirin. Taking a combination of medicines which includes interferon may increase your chance of experiencing significant side-effects, and you may need to be on treatment longer. This may mean taking time off work or making other changes to your normal routine. In this case, you may want to discuss with your doctor, nurse, family or friends about when to start treatment and how you might need to manage possible side-effects. New treatments for the less common genotypes of hep C are expected to become available in the future and will remove the need to use the older medicines, but please talk to your doctor before deciding to wait for new treatment options. Contacting the National Hepatitis Information Line on 1800 437 222 or your state hepatitis organisation is another good way to find support and answers to your questions.

Kim:

‘If you decide to go ahead with treatment, it should start at a time that works best for you.

There’s usually no need to make a rushed decision’

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From March 2016, new medicines known as direct-acting antivirals (DAAs) became available on the Pharmaceutical Benefits Scheme (PBS) in Australia.

These new medicines are highly effective for most people, have less side-effects and are taken for a shorter time. The new medicines have proven to be > 90% effective in curing hep C. Treatment will usually be for a period of 8 to 12 weeks, but may be for up to 24 weeks for some people. The medicines your doctor prescribes for you will depend on a number of things. These include: the genotype of hep C you have, whether you have developed cirrhosis (liver scarring) or whether you have other existing health conditions. If you have a less common genotype, you may need to use a combination of the new and older medicines such as interferon. In this case, you will usually be referred to a liver specialist to find out the best treatment option. As newer medicines become available, it is likely the need to use the older medicines will decrease, making treatment for all people with hep C much simpler.

For information about the current treatment options, you can visit the Hepatitis Australia website at www. hepatitisaustralia.com/hepatitis-c-facts/ treatment-for-hep-c, or call the National Hepatitis Info Line on 1800 437 222.

The new medicines now being used to treat hep C have fewer side-effects and are better tolerated. Side-effects may include fatigue, headache, insomnia and nausea, but they are uncommon and typically mild in severity.

In the small number of people who require ribavirin or interferon therapy, side-effects are more common and may be more severe. Please discuss possible Public treatment for hep C is funded through Medicare and the Pharmaceutical side-effects with your doctor.

Benefits Scheme. The only cost to you It is important to understand what will be any fees for seeing your GP (if the possible side-effects are for any they do not bulk bill) and the dispensing medicines you will be taking and tell fee for collecting your medicines at the your doctor if you are experiencing these pharmacy/chemist. These fees will vary symptoms. Health professionals can help depending on whether you have a Health reduce your side-effects and also help Care Card or Seniors Card. If you are you to manage them. prescribed more than one medicine, you will need to pay the pharmacy dispensing fee for each medicine.

It is important to remember that if you are not eligible for a Medicare Card, you may need to pay the full price for any medical services and medicines.

There is currently no safety information for the use of any DAA medicines during pregnancy or when breast feeding, therefore treatment of pregnant or breastfeeding women is not recommended. It is important that women Most medicines can have side-effects and do not get pregnant while they are taking each person’s experience will be different. medication to treat hep C.

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A small number of people may need to take ribavirin to treat their hep C. Ribavirin has been shown to cause birth abnormalities. It is very important that women taking ribavirin do not become pregnant during treatment or for six months after treatment. Men who are taking ribavirin must make sure that no female sexual partner becomes pregnant.

Two effective forms of contraception must be used while taking ribavirin and for 6 months after it has finished (e.g. the woman using the contraceptive pill and the man using condoms). If you need more information on contraception and the options available to you, talk to your doctor or family planning clinic.

Treatment options for children 18 years and under need to be discussed with your doctor.

If you are not eligible for treatment through Medicare, you can seek access to treatment through industry-sponsored trials of new drugs that are still in development. They include trials of new drugs that don’t use interferon or ribavirin.

Clinical trials are usually conducted in the larger hospitals in capital cities of Australia. Ask your GP to refer you to a liver clinic at one of the hospitals running drug trials so that you can be assessed to see if you are eligible. Additionally, you can purchase the medications at full price. For more information, speak to your doctor or specialist.

You will most likely be asked to visit your doctor or clinic during week 4 of treatment for blood tests and a general check-up.

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The blood tests are important to check how well the treatment is working. You may be asked to have further check-ups during treatment depending on the results of your blood tests.

If you are experiencing side-effects from treatment, it is important to let your doctor or health care professional know about them as soon as possible. You may be prescribed extra medication to help relieve the side-effects, and asked to see your doctor regularly for close monitoring of your condition.

A ‘cure’ is indicated by a sustained viral response (SVR) at week 12 after treatment. Your doctor will order a PCR viral load test 12 weeks after treatment finishes, and if the results show ‘virus undetectable’ (no virus) it means that you have successfully cleared the virus and there is no hep C in your body. Some doctors will order a further PCR viral load test 24 weeks after treatment.

34

Karen:

’Going ahead with treatment is a huge decision, but it’s all worthwhile if you can clear the virus’

Once you have been cured of hep C, your body will continue to make antibodies for ten years or more.

Antibodies are produced as a part of your body’s natural defence system to infections. Having hep C antibodies does not mean you still have hep C. If your PCR test is still negative 3 months after completing treatment, the virus is no longer in your body.

It is important to remember that while the antibodies remain in your blood, this does not protect you against getting hep C again. You should avoid bloodto-blood contact with others (including sharing injecting equipment) so you do not catch hep C again.

Most people will start to feel better during treatment for hep C. However, depending on the medicines used in your treatment, it may take some time after treatment for any side-effects to lessen and for you to feel the full benefits of being cured.

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35

If you don’t respond to treatment, or relapse in the six-month period after treatment, it means that you have not cleared the virus, and treatment has not worked for you this time. It’s important not to feel that you have ‘failed’. The treatment has not been a waste of time and effort – even reducing the amount of virus in your liver for a short while provides a big benefit to your health and liver. Try to keep up with healthy eating and lifestyle, and stay in regular contact with your doctor, so that your health is regularly monitored. Your doctor may also recommend re-treatment, which is subsidised by the government in certain circumstances. By staying in touch with your doctor you will also learn of any new developments in hep C treatments.

Less than one in five people with hep C will develop advanced cirrhosis. Usually it takes 20 to 40 years for this stage of liver damage to develop. People who have advanced cirrhosis are at increased risk for liver cancer or liver failure. If liver cancer does occur, radiotherapy, or cutting out a part of the liver may be necessary or in the event of liver failure, a liver transplant may be required.

Damian:

’Don’t give up if treatment doesn’t work for you the first time. There may be an option for re-treatment.

New and improved treatments are being discovered all the time, and maybe one of them will work for you’

With increasing access to better and earlier treatment, even fewer people with hep C will develop serious cirrhosis and find themselves needing liver surgery or transplant. For more information about serious liver damage, speak to your specialist or doctor, or phone the National Hepatitis Infoline.

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The risk of catching hep C through sex is so low that hep C is not classed as a sexually transmitted infection. In a monogamous heterosexual relationship (a male/female couple who do not have any other sexual partners) where one person is hep C positive and there is little risk of blood-to-blood contact during sex, there is no need to practice safer sex.

Hepatitis C is not transmitted by semen or vaginal fluids, but is more likely to be transmitted when there is a chance of blood-to-blood contact. It is also more likely when people are in the acute (early) stage of hep C infection or when the immune system is suppressed, for example, when there are other health conditions such as HIV. In such cases, safer sex practices should be used.

If blood-to-blood contact occurs during sex, hep C might be transmitted. To avoid blood-

to-blood contact during sex, use condoms, water based lubricant, 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 anus lining is easily damaged and broken) • During menstruation • During sexual practices that may involve trauma, bleeding or broken skin (rough sex play).

Some women who are post-menopausal (child-bearing years have finished and periods have stopped) are at increased risk of bleeding during sex because the vaginal lining becomes dryer and thinner.

If you are unsure of a sex partner’s sexual health status or where you have multiple sexual partners, you should practice safer sex to help prevent sexually transmitted infections (e.g. HIV, chlamydia, gonorrhoea, hep B, herpes or syphilis) being transmitted from one person to another.

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Men who have sex with men Although the risk of sexual transmission of hep C amongst the general population is low, there is an increased risk of sexual transmission of hep C for men who have sex with men, especially when men are also HIV positive, or have other sexually transmitted infections such as syphilis or herpes.

The risk of hep C being passed on is higher if the sex involves unprotected anal sex, fisting, group sex, blood, or shared toys.

To reduce the risk in this situation: • Use condoms and lots of lube for anal sex • Wear gloves and use lots of lube for fisting • Use condoms with 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, take special care to avoid bloodto-blood contact as your judgment around risks will be impaired and you’ll have decreased inhibitions.

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Statistically, there are more men with hep C than women with hep C. This may be due to greater levels of injecting drug use among men. Another reason may be that men do not seem to fight off initial infection as well as women and have a greater chance of chronic infection.

Men don’t seem to respond to combination treatment quite as well as women. Men also seem to experience slightly more longterm liver damage. Men with cirrhosis are at five times greater risk of developing liver cancer than women who have cirrhosis.

Joel:

’The only way of catching hep C during sex is if there’s blood-toblood contact. If you think there’s any risk at all, practice safer sex’

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In general, women seem to respond better than men to combination treatment. Women also seem to experience less long term liver damage.

Periods: Hep C is unlikely to cause problems for your periods if you don’t have significant liver damage (e.g. cirrhosis).

Birth control pill: Some contraceptive pills use oestrogen, which can cause problems with bile production (showing as itchiness and jaundice). For advice about contraception, speak to your hepatitis specialist or gynaecologist (women’s health specialist).

Menopause (child bearing years have finished): Being female and having cirrhosis may increase risk of osteoporosis (thinning of the bones). Some types of hormone replacement treatment may help lessen osteoporosis so speak to your specialist if you are thinking about this treatment.

Autoimmunity: If our antibodies (part of our immune system) get confused, instead of looking for foreign organisms, they can start targeting our own body cells. Confused antibodies are called autoantibodies. Studies have shown that people with hep C have greater levels of autoantibodies, and that among people with hep C, the condition is more common among women.

Trans people who are living with hep C may require more frequent checks of liver health. This is especially important for people who are taking hormone-based medications because they may place more strain on the liver. Talk to your gender clinic doctor or specialist to find out more information.

Nat:

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’If you think you’re at risk of having hep C, get yourself tested’ 39

Most babies are not at risk of catching their mum’s hep C. In fact, there is less than a 6% chance of your baby being born with hep C. If your baby is born with a hep C infection, there is a possible 50% chance that he or she will clear their infection naturally within the first 12 months.

Having hep C will not generally affect your pregnancy and being pregnant will not generally affect your hep C. Having cirrhosis, though, may involve complications, including increased risk of miscarriage. If you have cirrhosis, discuss your plans to have children with your liver Children with chronic hep C will benefit from seeing a paediatrician (children’s specialist before you get pregnant. health specialist) who is familiar with Hep C treatment and pregnancy monitoring and management of hep C. Childhood hep C appears to be mild with Because ribavirin has been shown to very little liver inflammation. cause birth abnormalities, pregnancy It is important that all children receive all must be avoided while on treatment. the routine immunisations recommended Women of child bearing age must not on the National Immunisation Program. be pregnant or breastfeed while on Hep B immunisation is included in this combination treatment or for six months program. Children with chronic hep C after treatment. They, and any male sex should also be vaccinated against hep A partners, must use two effective forms to prevent the additional liver injury that of contraception during sex (such as the could arise from a hep A infection. woman using the contraceptive pill and the man using condoms). Additionally, Except in the case of some types of the female sexual partners of men who insurance policies, there is no need to are on combination treatment must avoid tell other people about your child’s hep C pregnancy as the man’s sperm may status. This means you are not required be affected.

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to tell other family members, child care staff, school staff, babysitters, friends of the child or sports and activity groups.

Can a father pass on hep C to a baby?

Hep C cannot be transmitted from a father, through his sperm, either at conception or in the womb. There is no increased risk that the baby will be born with the virus if both partners have hep C.

IVF and ART Having hep C does not negatively affect your fertility (unless you have cirrhosis).

If you do have fertility problems, you may choose to use ART (Assisted Reproductive Technology services).

Initial screening questionnaires for men performed at the clinic will ask about hep C. If you have hep C, you will not be able to donate semen unless it is to be used in artificial insemination of your spouse. Such restrictions do not apply to the collection of a woman’s eggs.

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Aurora & Winsor:

’If you’re pregnant and also have hep C, there is less than 6% chance that your baby will be born with hep C’

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Getting a hep C test during pregnancy It is likely that you will be offered a range of blood tests during your pregnancy and these will probably include a hep C test.

It is your decision whether to have a hep C test and your verbal consent should be obtained first. Pre-test discussion with a health care worker should be provided so that you can make an informed decision (see p 19).

If you test hep C antibody-positive while pregnant, it is strongly recommended that the diagnosis be confirmed by having a PCR test. This is because incorrect test results can occur with the basic antibody tests, especially with women who are pregnant.

Childbirth You do not have to disclose your hep C status to health care workers at your birthing clinic. However, it is advisable for the midwife and obstetrician to be aware of your status as they may

be able to take some additional steps to prevent your baby being unnecessarily exposed to your blood. This relates to invasive testing such as foetal scalp sampling and/or electrodes for monitoring your baby during birth. Your choice to have either a natural or Caesarean birth does not change the risk of transmission and is entirely up to you.

Breastfeeding There is no evidence that breastfeeding spreads hep C. Mothers are encouraged to breastfeed whether or not they have hep C. Because hep C is spread by blood, if your nipples are cracked and bleeding, you should stop nursing temporarily. 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.

When can a baby be tested?

All babies whose mothers are hep C-positive will be born carrying their mum’s hep C antibodies. This is not the hep C virus. These ‘maternal’ antibodies should clear by the time the baby is 18 months old, unless the baby has contracted hep C. Most parents test the baby around this age for a clear result.

If parents are very concerned, a PCR test can be conducted on the baby when 8-weeks old and then again at 18-months old.

Telling children they have hep C Research suggests that a parent tell their child that he or she has a chronic condition as soon as the child can understand the basic information.

Around eight years old may be an appropriate age, or earlier if your child is asking specific questions.

For more information, talk to your postnatal nurse, your doctor, or phone the National Hepatitis Infoline.

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Partners, families and friends can play an important role in providing emotional and practical support to you but there is no guarantee that they will respond as supportively as you would like. They may need time to understand what a chronic condition like hep C means, so it may be useful to have booklets or brochures on hand if you decide to tell others.

There are only a small number of situations in which you are required by law to disclose that you have, or have ever had hep C: • People must inform the blood bank in pre-blood donation questionnaires (because you cannot donate blood if you have hep C).

• Health care workers who perform ‘Exposure Prone Procedures’, which is when a health care worker uses a sharp instrument inside the body of another person, for example, a dentist or surgeon.

• Some insurance policies (particularly life insurance) require that you tell insurer about any infections, disabilities, or illnesses that might influencetheir decision whether to insure you (or to adjust your premium). Income protection insurance may also fall into this category.

• If you are a member of the Australian Defence Force (Navy, Army, or Air Force) and you have hep C, you will have to disclose this. You may be required to leave the forces if you have hep C, although this is determined on a case-by-case basis.

Rose:

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’Most of the time it’s your choice whether to tell other people that you have hep C’ 43

Jane:

’Having hep C doesn’t mean that you should be treated differently from anyone else’

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44

Telling other people about your hep C can be a great source of support but can sometimes result in you being treated unfairly. It may be useful to talk to the National Hepatitis Infoline or your state Hepatitis organisation and discuss your concerns before you tell others about your hep C status.

Having hep C does not mean that you should be treated differently from anyone else.

This applies to all aspects of your everyday life, including maintaining privacy, buying or renting goods or services, obtaining health care services, applying for a job or getting a promotion at work.

As a person with hep C, you are covered by anti-discrimination laws. If something happens that seems discriminatory, you can access advice from work-related organisations such as your workplace union, a community legal centre, or from the anti-discrimination agency in your state or territory (see p 50).

At work you are under no obligation to inform employers, work colleagues or customers about your hep C. The exception is if you are

a health care worker who specifically carries out exposure-prone procedures, or if you are a member of the Australian Defence Force, in which case you have a responsibility to disclose (see ‘Telling other people’, p 43).

Your biggest workplace problem may be in taking time off due to hep C illness or treatment. If you don’t want your employer to know about your hep C, ask your doctor to be unspecific when he or she fills in your time-offwork certificate (e.g. medical condition rather than liver illness or hep C).

Because hep C is classed as a disability, your employer has a legal responsibility to make modifications to accommodate your hep C (as long as these changes are reasonable). They may be able to change your position from: fulltime to part-time, allow you to adopt flexi-time arrangements, allow you to work from home, or reduce the physical activity required within your job. Of course, such changes would not be possible without you telling your employer about your hep C. But if you decide to tell your supervisor, they are legally required to maintain your privacy and support employees with any health considerations where reasonable.

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If you become too ill to continue working you may seek to withdraw some of your superannuation funds. This can usually only be done on compassionate grounds or in cases of severe financial hardship. For more information about this, you should talk to your superannuation provider or the Australian Prudential Regulation Authority (APRA phone 1300 131 060).

Superannuation funds usually provide default disability and death insurance cover. Your medical history is not needed for this default level, but it may be required if you want higher levels of cover (such as income protection) or if you want to make a claim.

It is not unlawful for superannuation funds to ask if you have hepatitis or other infectious diseases, or whether you inject recreational drugs when they are considering your application for insurance cover.

If you feel you have been treated unfairly in regard to superannuation or insurance cover, phone the National Hepatitis Infoline for further information.

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In pre-employment health checks, all questions should be about the advertised job and employers have no legal reason to know about your hep C. The exception is if you are a health care worker who carries out exposure-prone procedures, or applying to become a member of the Australian Defence Force (see p 45).

When filling out a pre-employment medical questionnaire, if you are asked about liver disease, hepatitis or hep C, you need to decide which would be worse: mentioning hep C and possibly missing out on the job, or not mentioning it but having to explain at some later time why you didn’t. Phone the National Hepatitis Infoline to talk more about this issue.

When seeking welfare support or employment assistance, you do not need to tell Centrelink or Job Network agencies about your hep C. But if having hep C affects your ability to work, Centrelink, Job Network and your Job Capacity Assessor will need to know about it. They can help with additional support or reduced Centrelink obligations. If you are considering treatment, or experiencing health concerns due to advanced liver disease, a job capacity assessment (JCA) can even remove you from job seeking requirements while you are unwell. Request a meeting for a JCA with your job network provider or meet with a Centrelink Social Worker for more information. In these cases, your information should be kept confidential and would not be passed on to potential employers.

For more information about Centrelink support or for welfare support difficulties, see the ‘Advice and Support’ section.

Billy:

’If you’re on Centrelink benefits and having hep C affects your ability to work, ask for a Job Capacity Assessment, or ask to see the Centrelink Social Worker’

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Phone the National Hepatitis Infoline 1800 HEP ABC (1800 437 222) or the state or territory hepatitis organisation where you live to find out

what peer support options are available for you.

Hepatitis ACT

Doctors, liver nurses, liver specialists and infectious diseases specialists, are your main people to talk to for hep C medical advice and care.

Office: 1300 301 383 or 02 6231 6344 36 David St, Turner ACT 2612 www.hepatitisact.com.au info@hepatitisACT.com.au Hepatitis NSW

Phone the National Hepatitis Info Line for friendly and confidential help. The staff are usually available Monday to Friday, 9am to 5pm (in the time zone of your state). When you phone the National Hepatitis Info line you will be automatically transferred to a worker in your state or territory who has good knowledge about hep C. You can also contact the state or territory hepatitis organisation where you live or check out their websites to find out more information.

The National Hepatitis Info Line is 1800 HEP ABC (1800 437 222)

Infoline: 1800 803 990 Office: 02 9332 1853 Level 4, 414 Elizabeth St Surry Hills NSW 2010 www.hep.org.au info@hep.org.au Hepatitis Queensland

Infoline: 1800 437 222 Office: 07 3846 0020 Suite 2, 12 Cordelia St, South Brisbane, QLD, 4101 www.hepqld.asn.au info@hepqld.asn.au Hepatitis SA

Infoline & office: 08 8362 8443 3-9 Hackney Road, Hackney, SA, 5069 www.hepatitissa.asn.au admin@hepatitissa.asn.au Hepatitis Victoria

Hepatitis Australia

Office: +61 2 6232 4257 PO Box 716, Woden, ACT, 2606 www.hepatitisaustralia.com

Infoline: 1800 703 003 Office: 03 9380 4644 Suite 5, 200 Sydney Road, Brunswick VIC 3056 www.hepqld.asn.au admin@hepvic.org.au

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Hepatitis WA

Infoline: 08 9328 8538 (Metro) 1800 800 070 (country) Office: 08 9227 9800 134 Aberdeen St, Northbridge, WA 6865 www.hepatitiswa.com.au info@hepatitiswa.com.au Northern Territory Aids and Hepatitis Council (NTAHC)

Office: 08 8944 7777 (Darwin) 08 8953 3172 (Alice Springs) 46 Woods Street Darwin NT 0800 14 Railway Terrace Alice Springs NT 0870 www.ntahc.org.au info@ntahc.org.au Tasmanian Council on AIDS, Hepatitis and Related Diseases (tasCAHRD)

Office: 03 62341242 319 Liverpool Street, Hobart TAS 7000 www.tascahrd.org.au mail@tascahrd.org.au

Support from others with lived experience of hep C (peers) Join the hep C Australasia internet community to chat online with other people across Australia and New Zealand who are affected by hep C. www.hepcaustralasia.org

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ACT

02 6207 9977 (24 hr line) NT

08 8922 8399Â (Darwin) 08 8951 7580Â (Alice Springs) 1800 629 683 regional/rural (business hours) 1800 131 350 (all areas in NT after hours) NSW

02 9361 8000 or 1800 422 599 rural/regional (24 hour line) QLD

07 38375989 or 1800 177 833 (24 hour line) SA

08 8363 8618 metro or 1300 131 340 rural/regional (8.30am -10pm) TAS

03 6233 6722 metro or 1800 811 994 rural/regional (24 hour line) VIC

1800 888 236 (24 hour line) WA

08 9442 5000 metro or 1800 198 024 rural/regional (24 hour line) 08 9442 5050 or 1800 653 203 (for parents - 24 hour line)

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QLD Queensland Injectors Health Network (QUIHN)

www.quihn.org quihn@quihn.org.au Australian Injecting and Illicit Drug Users League (AIVL)

www.aivl.org.au

ACT Canberra Alliance for Harm Minimisation and Advocacy (CAHMA)

www.cahma.org.au info@cahma.org.au

VIC Harm Reduction Victoria (HRVIC)

www.hrvic.org.au admin@hrvic.org.au

WA Western Australian Substance Users Association (WASUA)

www.wasua.com.au info@wasua.com.au

NT Northern Territory AIDS and Hepatitis Council (NTAHC)

www.ntahc.org.au info@ntahc.org.au

NSW NSW Users and AIDS Association (NUAA)

www.nuaa.org.au nuaa@nuaa.org.au

For advice about Therapeutic Goods Administration (TGA) of complementary medicines: 1800 020 653 www.tga.gov.au (search for Australian Register of Therapeutic Goods)

Family Drug Support assists families who are dealing with the effects of drug use.

1300368186

Complaints about the service or treatment provided by a health service or hospital can be made to the health care complaints body in your state or territory.

To find out the one for your state or territory go to: www.ombudsman.gov.au/making-acomplaint/complaints-overview

Note: Don’t worry that the home page says that it’s for private health fund complaints – the organisations that are listed deal with complaints about the public health system too.

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Marina:

For advice about discrimination concerns contact the following: Australian Capital Territory: Human Rights Commission New South Wales: Anti-Discrimination Board Northern Territory: Anti Discrimination Commission Queensland: Anti-Discrimination Commission South Australia: Equal Opportunity Commission

‘If you have hep C don’t think you’re on your own – there are people and places you can go to for help’

Speak to a Centrelink social worker by calling 131 021. For information about disability, sickness and carer payments call 132 717.

If you think that you are being dealt with unfairly by Centrelink, go to the National Welfare Rights Network website and from there you can locate a local service to help you in your own state or territory. www.welfarerights.org.au

Tasmania: Anti-Discrimination Commission Victoria: Equal Opportunity & Human Rights Commission Western Australia: Equal Opportunity Commission National: Australian Human Rights Commission

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Antibody A protein secreted by cells of our immune system in response to infection. The antibody binds to an enemy molecule, in this case, a specific part of the hep C virus. This is meant to prevent the virus from infecting other cells or destroying them. As with other viral infections, the presence of antibodies does not necessarily mean a virus will be eliminated from the body.

Below are some words that you may read in this booklet, or else you may come across them when talking to medical staff or reading other information about hep C: Acute hep C The initial six month phase of infection after catching the hep C virus. Although the affected person often doesn’t feel unwell, blood tests can give a diagnosis.

ALT A protein that, when found in the blood at higher-than-normal levels, usually means that the liver is inflamed.

Ascites The term used when fluid fills the space between the lining of the abdomen and the organs. It happens when the liver stops working properly.

as rheumatoid arthritis and lupus. Research suggests that autoantibodies might be more common among people with hep C. Blood and blood products These are components of blood (including red cells, platelets and plasma) that are separated out by blood banks and used to treat medical conditions, such as to help blood clot in some people who have cirrhosis.

Blood awareness The practice of being alert to the potential or actual presence of blood in any situation or environment.

Asymptomatic Having no symptoms or signs of illness.

Carrier Although all people with chronic hep C are technically ‘carriers’ of the virus, the term ‘carrier’ usually refers to someone who has hep C yet is in good health. It is not a useful term and better definitions of hep C status are antibody-positive or antibody-negative, and symptomatic or asymptomatic.

Autoantibodies These antibodies are aimed at specific body tissues rather than external agents such as viral infections. They are implicated in the cause of some autoimmune diseases such

Chronic hep C A hep C infection that lasts six months or longer. Unless successfully treated, people with chronic hep C are likely to have a lifelong infection.

AST A protein which, when found in the blood at higher levels, usually means that there is liver damage (although less specific for liver damage than ALT).

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Joffa:

‘It’s really good to make sure you understand the medical words that health professionals use – especially when they’re talking about you!’

Cirrhosis A condition where severe scarring has replaced much of the liver tissue. This severe scarring can seriously affect the normal functioning of the liver.

Co-infection Generally refers to hep C infection with another virus (e.g. HIV or hep B). In contrast, ‘mixed infection’ generally refers to infection involving different hep C genotypes.

Compensated cirrhosis Even though there is extensive scarring of the liver, enough healthy cells remain and sufficient blood flows through the liver to enable it to keep working reasonably well.

Decompensated cirrhosis The term used when the liver is so scarred that the damage has started to interfere with its ability to function properly, resulting in serious illness (including weight loss, fluid retention, stomach swelling, and bleeding problems).

Endoscopy A medical procedure which involves a thin tube with a camera on the end being put into the mouth and down the food pipe to look inside the body.

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Exposure prone procedure Medical procedures where there is potential for contact between the skin (usually finger or thumb) of a health care worker and sharp surgical instruments, needles or sharp tissues (such as a fractured bone) in body cavities or in poorly visualised or confined body sites, (for example, dental work).

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Fibrosis Scar formation resulting from the repair of tissue damage. If it occurs extensively in the liver, it is called cirrhosis.

Gastroenterology A branch of medicine specialising in diseases of the stomach, intestines, oesophagus and related organs (including the liver).

Genotype Different genotypes of the one virus are similar enough to be regarded as the same type of virus but have some minor differences in their genetic code. These differences may mean the virus reacts differently to our immune response or to drug treatments and natural therapies. There are six basic variations of the hep C virus, and they are called HCV genotypes 1, 2, 3, 4, 5 or 6.

Hepatic encephalopathy Brain dysfunction directly caused by liver dysfunction, most often recognised in advanced liver disease. Symptoms may include confusion, personality changes, and poor concentration.

Hepatologist A liver specialist, usually working out of a liver clinic.

Indeterminate Hep C antibody testing is generally performed using two different types of antibody tests. When one test comes back positive and one negative, the result is called ‘indeterminate’ and further confirmatory testing is done, usually by PCR. Mutate When cells divide or viruses multiply, their genetic material must be copied. Sometimes mistakes are made when this happens and the resulting new cell or virus is different in some way. This is important for viruses because mutation can trick the immune system into not recognising them.

Natural history The natural history of a disease is defined as what happens to people (in the absence of medical treatment (or other interventions) over a given period of time.

Needlestick injury Accidental injury from a needle containing another person’s blood. Usually referred to in context of medical settings and used syringes discarded in public places.

Non-A non-B hepatitis The old term for hepatitis shown not to be caused by the hep A and B viruses.In 1988, this form of hepatitis was shown to be caused mainly by hep C.

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Non-responders People who, after 12 weeks of treatment fail to normalise their ALT levels.

Nosocomial transmission Transmission of hep C (or other illness) within a hospital setting (e.g. through blood transfusion or needlestick injury).

Oedema A build-up of excess fluid in the body. The build-up of fluid causes affected tissue to become swollen.

Oesophageal varices Abnormal, enlarged veins in the lower part of the oesophagus (the tube that connects the throat and stomach).

Oesophageal varices occur most often in people with serious liver disease.

Parenteral or percutaneous transmission Transmission of a disease through injection or a break in the skin – and not through the digestive system.

Pathogen Any organism or substance capable of producing a disease.

Perinatal infection Transmission of an infection from mother to baby, around the time of birth.

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Portal hypertension An increase in the blood pressure within a system of veins called the portal venous system. The portal vein travels through the liver. If the vessels in the liver are blocked due to liver damage, blood cannot flow properly through the liver. As a result, high pressure in the portal system develops.

Primary liver cancer Primary liver cancer, also known as hepatocellular carcinoma (or HCC), is a cancer that begins in the liver. HCC may follow on from severe scarring of the liver (cirrhosis).

Prophylaxis Protective or preventative treatment that is given to stop the spread of disease. An example is having a vaccination (injection) to prevent hepatitis B. Reinfection Generally describes a second hep C infection, either in a person with chronic hep C already, or in a person who had previously cleared their infection.

Relapsers People who, after an initial good response to treatment, subsequently have a recurrence of their illness (typically within six months following end of treatment).

Steatosis (fatty liver) Infiltration of fat within the liver. It increases the risk of cirrhosis and is more common

among people with hep C compared to the general population. Severe steatosis is not just related to hep C. It may be associated with obesity, diabetes and chronic alcoholism.

Vertical transmission Transmission of an infection from mother to baby, during pregnancy or at birth.

Viral load The amount of virus present in a person’s blood stream. It is usually measured by the PCR quantitative test and the result given is the number of virus particles per ml of blood.

Virus A virus is a type of germ. It cannot reproduce on its own and needs to get inside a ‘host’ cell (a cell of an organism such as a human) and borrow some of its genetic material in order to multiply.

Window period This is the time gap between exposure to the hep C virus and when a blood test will give an accurate result. With PCR testing, the window period is around two weeks (although it can vary from less than a week up to 6 weeks). With antibody testing, the window period is 12 weeks.

The window period for PCR testing babies is eight weeks.

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Graeme:

‘If any other medical words need explaining, or you want extra information, phone the National Hepatitis Info Line on 1800 HEP ABC (1800 437 222)’ 54

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