TWO HEP C QUESTIONS

What will happen to me? Should I go on treatment?

This work is copyright although it may be reproduced in whole or in part for study or training purposes subject to the inclusion of an acknowledgment of the source and no commercial usage or sale. Hepatitis NSW Produced with assistance of the Hepatitis NSW Medical and Research Advisory Panel. Text and design by Paul Harvey. First published July 2005 This online edition April 2013 ISBN: 978-0-9585318-5-6 Hepatitis NSW is funded by the NSW Ministry of Health.

Special thanks to: Professor Greg Dore, The Kirby Institue for infection and immunity in society; and St Vincents Hospital. Associate Professor Simone Strasser, AW Morrow Gastroenterology and Liver Centre; and Australian National Liver Transplant Unit, Royal Prince Alfred Hospital. Professor Geoff McCaughan, Chair of the NSW Ministerial Advisory Committee on Hepatitis; The Centenary Institute; and AW Morrow Gastroenterology and Liver Centre, Royal Prince Alfred Hospital. Dr Scott Davison, Liverpool Hospital; and University of NSW South Western Sydney Clinical School. Ms Janice Pritchard-Jones, Clinical Nurse Consultant, Royal Prince Alfred Hospital. Ms Sue Mason, Clinical Nurse Consultant, Royal Prince Alfred Hospital. Ms Ann Taylor, Clinical Nurse Consultant, Royal Prince Alfred Hospital. Ms Zoe Potgieter, Clinical Nurse Consultant, St Vincents Hospital. Mr Stephen Musgrove, Hepatitis C Peer Support Worker, NSW Users and AIDS Association.

via www.hep.org.au

twitter.com/HepatitisNSW

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Cover images via Flickr.com Individual credits can be found in following pages.

Contents
Getting the most from this booklet ...................... 4 Introduction What will hep C do to me? Hep C outcomes chart Long term liver risk chart Notes on the long term liver risk chart What does my score mean for me? Tell me about hep C treatment Standard combination treatment Triple combination treatment Treatment side effects Before treatment Access to treatment Treatment at liver clinics Treatment at OST clinics Treatment via private specialists 6 8 9 12 14 18 20 22 24 26 28 30 32 34 35 Treatment via doctors Treatment in correctional centres Treatment monitoring Medicare subsidised treatment Alternative access to treatment After treatment Avoiding liver damage Cut down on alcohol Avoid smoking Marijuana Maintain a healthy body weight Avoid other hepatitis viruses Further information if you are on OST Recommended reading Useful contacts Glossary Reader survey 35 36 37 37 38 38 41 42 42 43 44 47 48 50 52 53 55
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What is my risk of long term liver damage? ...... 10

Two hep C questions: What will happen to me? Should I go on treatment?

Getting the most from this booklet

Around half of Australian adults cant fully understand medical advice they get from a GP or specialist. Thats one in every two people. We want to help everyone make the most of this booklet: we want you to understand the pros and cons of the different choices you have when it comes to making choices, we want you to tell your GP, specialist or nurses what your choice would be and why you feel that way we want you to be involved in your healthcare decisions so theyll be your decisions and youll be keen to stick to them. These days, many healthcare workers are taught about health literacy. This is about the responsibility of healthcare workers to make sure their patients can understand them. If you feel like you dont understand anything in this booklet: take the booklet with you next time you visit your GP or clinic and ask them about it (make a note in the back of this booklet about what it is so you dont forget what to ask) phone and ask our Hepatitis Helpline phone workers. They are available Monday to Friday, 9am to 5pm. They are also able to chat about how you feel about your hep C health choices.

Visiting your GP or clinic might be uncomfortable if you do not understand everything your health workers tell you. In this changing world, though, many healthcare workers think more carefully about how they communicate with their patients.

Think of your specialist, GP, clinic nurses and Hepatitis Helpline as your Two Hep C Questions healthcare team.

Hepatitis Helpline freecall: 1800 803 990

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Image by MixedUpMedia/Mari W. - tryin to catch up via Flickr.com

Two hep C questions: Two hep What C questions: will happen What to will me? happen Should toIme? go on Should treatment? I go on treatment? Page 5

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Introduction
This booklet aims to help you make good decisions about your health. It provides a guide to long term hep C health outcome. It is intended for use by you AND your GP (doctor), liver specialist or CNC (Clinical Nurse Consultant; a highly trained nurse). People with hep C who dont feel ill mightnt think this booklet relates to them. Liver disease can occur, though, without major symptoms of illness. Only your GP and liver specialist can tell you what condition your liver is in. Your relationships with your specialist, GP and nurse are important. Liver tests are complex and difficult to interpret without medical training. These healthcare workers can work with you and take into account your individual health issues and needs. This booklet is about your hep C outcome, treatment and looking after your liver. You can get many more information resources about other aspects of hepatitis from the Hepatitis Helpline or from www.hep.org.au

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Image by Danny Guy via Flickr.com

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What will hep C do to me?

Most people with chronic hep C wont develop serious liver damage even after 40 years. Many of these people wont feel ill. Many others will feel ill, though. They will have hep C symptoms including feeling physically or mentally tired, irritable or depressed, or will have pain or ache in the upper right-hand side of their abdomen. Some people with chronic hep C if they didnt have successful treatment would eventually develop liver cirrhosis (scaring of the liver). This could have a serious impact on their quality of life. A small number of people with hep C if they didnt have successful treatment would eventually develop life threatening illness such as liver cancer or liver failure. The Hep C outcomes chart (right) shows this in greater detail. The chart cant predict if you might or might not develop cirrhosis, liver cancer or liver failure. Many factors are considered when predicting your own level of risk (see following pages). A full overview of living with hep C can be found in the booklet: What You Need To Know: a guide to hepatitis C.

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Image by ElvertBarnes via Flickr.com

Hep C outcomes chart

This chart shows the different outcomes that occur for people with untreated chronic hep C. It does not aim to show your own potential outcome (prognosis). Factors such as your alcohol intake, age when you got hep C, body weight and current level of liver inflammation may all influence your prognosis. You are advised to seek medical advice regarding your own situation. On average, one of every four people who contract hep C virus will clear their infection naturally within the first 12 months. Three of every four people will have a chronic (ongoing) hep C infection. Of 100 people with chronic hep C who remain untreated: After 20 years
45% may never develop significant liver damage 30% may never develop significant liver damage 47% may develop moderate liver damage 45% may develop moderate liver damage 7% may develop cirrhosis of the liver 20% may develop cirrhosis of the liver 1% may develop liver failure or liver cancer 5% may develop liver failure or liver cancer
G Dore / Hepatitis NSW, 2012

After 40 years

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What is my risk of long term liver damage?

The following factors impact on your risk of long term liver damage: your current stage of fibrosis (the process of scaring in your liver) how long you have had hep C how old you were when you contracted hep C whether you are overweight or have diabetes your alcohol intake, now and in the past whether you also have chronic hep B or other liver diseases your response to hep C treatment whether you also have HIV or other diseases that weaken your immune system whether you are male or female whether you are a heavy smoker of tobacco or marijuana.

To predict your chance of long term liver damage: ask your GP for a referral to a liver clinic or specialist for a Fibroscan or, if required, a liver biopsy with your specialist, apply your score to the Long term liver risk chart (page 10) and factor in any confounding factors.

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Fibroscan
A fibroscan machine (right) uses advanced ultrasound technology to assess the stiffness of your liver. It measures the speed of a vibration wave (a pulse) that is initiated by a probe on your lower chest overlying your liver. The stiffer your liver, the more likely that fibrosis or cirrhosis exists. The scan takes only 5-10 minutes and does not involve needles or other invasive instruments. Apply your fibroscan score to the Long term liver risk chart on the following page (also see notes on page 12).

Liver biopsy
A liver biopsy involves taking a small sample of the liver which is examined under a microscope. Hospitals may use different methods of scoring, but your specialist will be able to interpret these. Liver biopsy scores can be applied to the Long term liver risk chart on the following page by using the notes on page 12.
Image via Google Images Page 11

Time frame
Your clinician will be interested in knowing how long you have had chronic hep C. Your length of chronic infection will help your clinican to interpret the meaning of your fibrosis score and your fibroscan or biopsy results.

Two hep C questions: What will happen to me? Should I go on treatment?

Your fibroscan score allows your doctor to chart your place on the Long term liver risk chart.

Long term liver risk chart

Fibroscan scores less than 7.5 Low risk

Factors that are associated with a higher risk of serious liver disease include:
1. in addition to chronic hep C, also having HIV or chronic hep B 2. heavy alcohol intake, now or in the past 3. being aged 40 or more when hep C was contracted 4. obesity 5. type 2 diabetes 6. being a heavy smoker of tobacco or marijuana.

Consider making beneficial lifestyle changes bullet points 2, 4, 5 & 6. Have follow up visits with your doctor every 6-12 months. Have fibroscan test every 1-2 years. Unless treatment is a priority for you, youd be generally advised to consider waiting for improved treatment options to become available rather than have treatment now. Keep in contact with your Hepatitis community organisation. This will keep you in touch with future news on improved treatment options.

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Fibroscan scores 7.5 to 9.4 Medium risk

Make beneficial lifestyle changes bullet points 2, 4, 5 & 6. Have follow up visits with your doctor every six months. Repeat fibroscan tests every 12 months. Visit your local treatment clinic and keep in touch with your treatment clinic CNC who can assist with treatment readiness. Consider treatment, based on your treatment readiness (page 26) and your treatment success factors (page 19).

Fibroscan scores above 9.5 Significant risk for serious complications

Maintain your beneficial lifestyle changes bullet points 2, 4, 5 & 6. Have more regular monitoring with your doctor and liver specialist and strongly consider treatment. Have regular tests for liver cancer. Strongly consider commencing treatment. Keep in touch with your treatment clinic CNC about the latest treatment drug trials.

G Dore / Hepatitis NSW, 2012

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nOTES ON THE long term Liver risk CHART

This table shows equivalent fibroscan and biopsy scores.
Fibroscan score 2.5 7.4 Biopsy fibrosis score 0-1 (minimal fibrosis) Notes Fibroscan scores in this lower end of the scale are reasonably dependable and easy to interpret. Fibroscan scores in this mid range are not very dependable and interpreting them requires clinical expertise and possible liver biopsy (see page 9). Fibroscan scores in this upper end of the scale are reasonably dependable but interpreting them requires clinical expertise.
G Dore / Hepatitis NSW, 2012

7.5 9.4

2 (moderate fibrosis)

9.5 or higher

3 (severe fibrosis) or 4 (cirrhosis)

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Nicks story
As an example, of how the Long term liver risk chart works, consider a guy in his late 50s. Well call him Nick. Nicks had hep C for around 30 years. He had a fibroscan six months ago with a score of eight. Nicks fibroscan score of eight is not in the serious end of the scale but needs to be considered in light of his lifestyle. He has no more than two middies after work during the week but he has 6-8 per day on the weekends. He doesnt smoke and is generally fit but is at the upper limit of his healthy weight range. Given Nicks weekend drinking levels and him nudging being overweight, his risk of further liver damage is increased. Its probably time for Nick to get more serious about his health, reduce his drinking and more closely monitor his liver disease.

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What does my score mean for me?

Low score
If you have no or minimal liver fibrosis, you probably wont go on to experience long term liver damage. You could wait for the expected improvements in treatment over the next few years and try to avoid drinking too much alcohol (see page 40). Have your liver checked by your GP twice a year: once during an annual general health check, and six months later for a liver health check.
Image by Parker Michael Knight via Flickr.com

Because hep C is associated with diabetes and fatty liver, try to avoid becoming overweight or developing diabetes speak to your GP about these important issues.

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Medium score
As with the low score recommendations (left), if you got a medium score, you need to take extra care of your liver. Think about not drinking alcohol at all. Have your liver checked twice a year and have an annual Fibroscan examination done. Talk to your GP and specialist about alcohol and also discuss hep C treatment. Think more seriously about getting treated. Phone the Hepatitis Helpline. They may be able to put you in contact with someone who has already tried treatment. Also speak to the Hepatitis Helpline about their HepConnect peer support service.

High score
Falling into the high score range means you need to take extra special care of your liver. In addition to the advice for low and medium scores, you should be having regular medical checks with your GP and specialist. Because of your higher chance of progressing to serious liver disease its important to think hard about having treatment. There might be a good chance your hep C will be cured. If that happens, youll minimise your chance of serious liver disease. Avoid alcohol, cigarettes, marijuana and any drugs or medications that might impact on your liver. Your specialist will be best suited to advise you on your liver and overall health options.

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Tell me about hep C treatment

Your score on the Long term liver risk chart may suggest you think about hep C treatment. If you didnt get a high score on the chart there is usually no need to make a rushed decision about whether to start on treatment. Hep C is a slow moving disease and a delay of a year or two in getting treatment is usually no problem. It is better to take some time to learn all about what is involved, make a balanced decision and then prepare yourself for treatment. Treatment takes a while to organise. There are many factors to consider so its unrealistic to expect to walk in off the street and start straight away. There are tests and examinations to be done, and discussions about your family and work situations. To find out about treatment talk to your GP and treatment clinic staff. The specialist hep C nurses will be able to tell you about treatment and help with getting ready for treatment. It is also possible to talk to other people who have gone through treatment (speak to the Hepatitis Helpline about this). You will also be able to find peoples personal stories in Hep Review magazine and via www.hep.org.au There are other booklets that provide valuable information about hep C treatment (see page 48). There are two important blood tests to determine your chance of successful treatment and perhaps what treatment you need: the hep C genotype test shows what strain of hep C you have. The test result will guide how long your treatment lasts and suggests your chance of success (see page 20) if you have genotype 1, then an IL28B gene test may be offered by your specialist. This is a blood test that indicates how sensitive you are to interferon and gives a good clue about the likely success of your treatment.

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Your chance of being cured with hep C standard combination treatment is related mainly to: younger age shorter length of infection being female (and premenopausal) low alcohol intake having a healthy body weight having a lower viral load having hep C genotype 2 or 3.

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Standard combination treatment

The most commonly available treatment for hep C is standard combination treatment. There are two brands: Pegatron or Pegasys RBV. Both brands involve a combination of once-weekly injections of pegylated interferon and twice-daily ribavirin tablets. Being cured with combination therapy is related to: having genotype 2 or 3, younger age, having a shorter length of infection, being female (and premenopausal), a low alcohol intake, having a healthy body weight and having a lower viral load. If you have genotype 1 or 4, you are given 48 weeks of therapy and generally have a 50% chance of cure. However, if you have genotype 1 and minimal liver damage, you have a 6070% chance of cure. If you have genotype 2 or 3, you are usually given 24 weeks of therapy and generally have a 70-80% chance of cure. Treatment may be extended if you have cirrhosis or the treatment is slow to clear the virus from your blood. Your response is monitored while you are on treatment. This is used to determine your length of treatment and chance of treatment success. With hep C treatment, the word cure means you permanently clear the hep C virus from your body. Doctors and nurses call this a sustained virological response. Blood tests are done at the end of therapy to check whether you have cleared the virus. They are repeated three or six months later. If all these tests return a negative result, you are said to be cured of your hep C infection. This means you: are no longer at risk of passing on the virus will most likely see an improvement in the condition of your liver will probably experience a reduction in symptoms will remain hep C antibody positive but will remain virus free. This is not always understood by all healthcare workers so make sure your liver clinic advises your GP. It is a good idea to request a copy of the GP follow-up letter be sent to you.

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NB: If you have cirrhosis even if you clear your hep C you will still require ongoing long-term follow-up and monitoring with your liver specialist.

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Triple combination treatment

Two new drugs for the treatment of hep C genotype 1 are now available in Australia. They mark the beginning of a revolution in hep C treatment and will generally shorten treatment periods and increase the chances of people curing their hep C. People will be given either Incivo (telaprevir) or Victrelis (boceprevir). They are both protease inhibitors and are taken as pills. Whichever drug that people are on, it will be given with the standard treatment pegylated interferon and ribavirin which will form a triple combination treatment. Telaprevir is given for the first 12 weeks (along with standard treatment). The remainder of treatment involves just standard treatment. Boceprevir is started after an initial four weeks of standard treatment (lead in). Boceprevir and standard treatment then continue for at least another 24 weeks. For people with genotype 1 who have never been on treatment, the triple combination treatments will increase their chance of cure from 40-50% to 70-75%. Additionally, these cure rates will often be achieved with just 24-28 weeks rather than 48 weeks of treatment. People on triple combination treatment trials have reported more side effects than those on conventional combination treatment. Side effects included skin rash (the most common side effect), increased anaemia, fatigue, fever, headache, nausea, insomnia, diarrhoea and flu-like symptoms. In most cases, side effects were mild or moderate and were addressed by lotions or medications. Because of the increased side effects, more people may drop out of treatment around 15% compared to 5% for standard treatment. These drugs are a big advance in the treatment of hep C. People with genotype 1 whose hep C has advanced to cirrhosis, and who are at increased risk of liver failure or liver cancer, now have a greatly improved chance of a cure.

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Treatment side effects

If you go on treatment whether or not it is standard combination or triple combination it is likely that you will experience some level of side effects. The most common are flu-like symptoms such as chills, fever, malaise, muscle pain and loss of appetite. Other side effects may include anaemia, irritability, depression, mood swings, sleep disturbance, itching, tingling or crawling of the skin, or impaired concentration and cognitive dysfunction such as memory loss, apathy and a slowing down of mental processes. Side effects tend to settle down and lessen over time. In many cases they can be managed by adjusting doses of their treatment drugs or by the prescription of additional medications. Some prescribed and over-the-counter medications can interact with your treatment drugs so always speak to your treatment clinic doctor or nurse before taking anything.

Management of treatment side effects has improved significantly. Better management means that more people are able to access treatment and finish it. Speak to your treatment specialist or CNC about any side effects when they occur.

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Before treatment
If youve decided to start on treatment, the key thing is preparation. Treatment can take 24-48 weeks so plan it at a time that best suits your lifestyle, work and other commitments. Were you planning on having babies? These plans will have to be put on hold while on treatment. It could be a mistake to plan to go on treatment too soon after having a baby. Are you are a woman with hep C? If so, consider having hep C treatment before you experience menopause. Before menopause, you have a slightly higher chance of treatment success compared to men. Are you personally able to go the distance? This is something that you mightnt know until you give it a go but ask yourself these questions: are you currently relying on more than two drinks at the end of each day to relax? If so, how many are you having? Could you do without them? do you feel overly stressed by anything in your life? have you dealt with tough times in your past and come through okay? have you previously experienced thyroid illness or depression?

Treatment readiness
Treatment readiness involves knowing enough about treatment to make an informed decision and being able to take into consideration your work, family and personal situation. Being treatment ready puts you in the best place for your treatment to succeed. Are you the main breadwinner? Lots of issues will need to be considered, such as the possible need to take time off work for appointments at the treatment clinic. Will you be able to take sick days off work if you have a hard time with treatment drug side effects? Do you play a key role at home? Do you have a larger share of household duties? Are you able to get support from other people to help lessen your workload?

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Work-up
If you decide to go on treatment, firstly youll have to go through what is called a work-up stage. Your CNC will ask questions and take a thorough history about your home, work, health and lifestyle and arrange medical tests and possible referrals. You may be advised to see a psychologist, psychiatrist, social worker or other health professional prior to starting on treatment. This is not to screen you out of treatment. The aim is to assess your support needs and best prepare you for treatment.
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Your CNC will work with you to identify issues that need consideration or action before you start treatment. Your nurse will also provide healthcare and support throughout your entire treatment course and follow-up period.

Access to treatment
Hep C treatment is most commonly provided through hepatitis or liver clinics at major public or private hospitals. It is often available at OST clinics (Opioid Substitution Treatment). It can also be provided by private specialists (gastroenterologists or hepatologists). Some GPs can co-manage your treatment. In some cases, they can fully organise it and provide it for you. It is also available in NSW correctional centres (prisons). Speak to your GP and the Hepatitis Helpline about your hep C treatment options.

Ive done a lot of things that some might say are courageous or risky. Ive hitched and driven across America, travelled through the Middle-East and had a pretty full and interesting life, but nothing has given me a sense of accomplishment like completing 48 weeks of combination treatment. No one could do it for me. It was up to me to work out how to find a way through. Completing treatment and clearing hep C are two of my proudest achievements. Walters story - Abridged from Hepatitis Australias booklet, Treatment, Life, Hep C and Me.

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Treatment support
Hepatitis NSW runs a HepConnect peer support service which may be able to put you in contact with someone who has already been on treatment. Phone the Hepatitis Helpline for more information about HepConnect or other support services.

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Treatment at liver clinics

Liver clinics are a service provided at most major hospitals. Staff at liver clinics include hepatologists (liver specialists) and/or infectious diseases specialists, doctors, CNCs, other nurses, dietitians, social workers, counsellors, technicians who operate testing equipment and admin staff. In a nutshell, liver clinics make it possible for lots of people to access specialist liver advice and care. You cant visit a liver clinic without an appointment. Your GP needs to make a referral for you to see a liver clinic doctor or specialist. Liver clinics are an outpatient service and there is no overnight stay involved. Its a good idea to be early for your appointment. The liver clinic might not be easy to find and some hospitals can be confusing places to find your way around. The liver clinic will have its own reception and you need to check in to let them know youve arrived. The receptionist will then prepare your file for the doctor or specialist. You may be referred to the CNC before or after your appointment.

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When you see the specialist, they will discuss your liver health problems and suggest possible monitoring or care plans including the merits of going on hep C treatment. Follow-up may be suggested with the specialist, the liver clinic CNC or with your GP. In any case, its a good idea to ask for copies of any test results. If in doubt about your liver health care, or for further information, dont hesitate to talk to the clinic CNC. You dont need a referral to chat with your CNC but its good to phone them as they may be busy with other patients.
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Treatment at OST clinics

Opioid substitution treatment (OST) clinics can play an important role in hep C treatment and clinical management in NSW. Over 40,000 people in Australia are on methadone or buprenorphine (bupe). Around half of these people have chronic hep C and OST clinics may be the main place they access healthcare. If you are on OST you might have lived a harder lifestyle over the years. You might score higher on the Long term liver risk chart. Hep C treatment may be quite an urgent and important decision. Access to hep C treatment is available via some OST clinics in NSW. Being on methadone or bupe or using injecting drugs does not exclude you from treatment. The success rate of hep C treatment for people at OST clinics is similar to that for people at hospital liver clinics. Hep C treatment drugs do not interfere with the methadone or bupe, and vice versa. If you are on methadone or bupe, dont feel as though hep C treatment is out of your reach. As an OST service user you have as much right to hep C treatment as anyone else. For more information, speak to your clinic doctor, clinic nurses, NUAA or the Hepatitis Helpline. Many OST clinics have peer support workers who are a good source of information and support. Also see page 46.

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Treatment via private specialists

Private specialists may offer hep C treatment out of their own rooms or clinic. Quite often these specialists are also involved in hep C treatment at public hospitals. Its a good idea to ensure that they provide you access to a nurse or counsellor and 24-hour access to medical advice. Its also wise to discuss any additional costs up-front with your private specialist.

Treatment via DOCTORS

Certain GPs who have had special training are able to co-manage your hep C treatment. They will help monitor your treatment once youve been started off by a liver clinic treatment specialist. Some GPs can fully handle your treatment from start to finish. If you have an easier-to-treat genotype (2 or 3) and few complicating factors, this option may be suitable for you. GP management of hep C treatment is a new and evolving field. For more information, contact the Hepatitis Helpline.

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Treatment in correctional centres

Around 40% of people in NSW jails have hep C. This makes jails an important place to provide hep C treatment. Healthcare services in NSW correctional centres are provided by Justice Health. They use a nurse-led model of care to help increase and improve access to hep C treatment. If youre inside and thinking about hep C treatment, talk to your clinic nurse. You can also phone the NSW Prisons Hepatitis Helpline for more information (see page 50).
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Treatment monitoring
Monitoring is required to check that treatment is working and to keep an eye on side effects. You will be asked to return regularly to the treatment centre or to your doctor for blood tests and general assessment. PCR viral load tests are used during treatment at 4, 12 and 24 weeks to show whether the treatment drugs are working or not. They measure the amount of hep C virus circulating in your blood. If these tests dont show big drops in the level of virus during treatment then it isnt working well and you may be taken off it. A different type of PCR test will also be done three or six months after the end of treatment to check whether you have been permanently cured of hep C. Viral load does not show the progression of hep C. It is measured to help determine your response to treatment. Your treatment nurse or doctor will discuss this with you when testing your viral load, and will explain the results.

Medicare subsidised treatment

Standard combination treatment and Triple combination treatment are both available in Australia through the Medicare subsidised medicines program. The program is called S100 and is for highly specialised medications. The treatment drugs are prescribed by your treating liver specialist and dispensed from your hospital pharmacy department. To access the drugs, you need to satisfy a range of conditions (called S100 criteria). The criteria change from time to time for more information phone the Hepatitis Helpline.

Medicare subsidised hep C drugs are not entirely free. A monthly administrative co-payment is required. This is paid at the hospital pharmacy when you collect each months supply of drugs. The level of your co-payment ranges from $5 to approximately $40* per month and depends on whether you are attending a private or public treatment centre, and whether you are a health care or seniors card holder, pensioner or war service veteran.
*

These co-payment costs increase from time to time.

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Alternative access to treatment

If you are not eligible for the Medicare subsidised treatment your specialist can organise purchase of treatment drugs at full price. This is expensive, though, with 24 weeks of standard combination treatment costing around $9,000 and triple combination treatment costing even more. Clinical trials can offer early access to new hep C treatments. These trials usually run at the major treating hospitals. Over the next few years there may be trials of new treatment drugs that dont use interferon or ribavirin. Phone the Hepatitis Helpline if you want more information about hep C treatment drug trials.

After treatment
After successful hep C treatment, you dont have immunity to hep C and could catch the virus again. It is still important to avoid blood-to-blood contact with other people. If you clear hep C your body will continue to manufacture antibodies and you will still show as hep C antibody positive. This shows that you had a past infection.

Having antibodies to hep C does not make you immune to catching it again.
After treatment finishes, you will have follow-up visits for PCR tests at three months, six months and one year with your treatment clinic or GP. These tests will determine whether you have been cured or not. Clearing your hep C does not give a green-light to resume heavy drinking or smoking. Everybody should try to avoid risks for liver disease.

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Even if you successfully clear the virus, your past hep C may have caused advanced liver scarring (cirrhosis) which may remain. If this is the case, your specialist will arrange follow-up and monitoring. If youve been cured of hep C but have cirrhosis, you still have a small ongoing risk of liver cancer. If your treatment didnt clear your hep C you should continue to see your GP for regular visits and monitoring. He or she will be able to advise on how to minimise ongoing liver damage. He or she will also keep you informed of any new developments in hep C treatments. Also keep in touch with your treatment clinic some may offer a fibroscan test every year or two to help monitor your liver.

Six months posttreatment I feel like a new woman. The heavy burden of fatigue Id lived with for years is gone and I am enjoying the kind of full and busy days I had enviously watched others enjoy. Hep C undetected at the final stage sounded like the sweetest words in the English language. Meeras story, Hep Review, Edition 73, June 2011.

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Treatment doesnt always mean youll feel better.

Whether you were cured or not, you might have ongoing health problems after treatment finishes. These may appear as hep C symptoms (see page 6) or treatment side effects (see page 24). This can be quite upsetting, especially if you feel you no longer have access to the treatment clinic staff. This happens only in a small number of people after they finish hep C treatment. If you experience post-treatment health problems and your treatment was successful, its important to remember that you have cleared your hep C and prevented more serious illness in the future. If you are experiencing post-treatment health problems, ask your treatment staff and your local GP to talk to each other and discuss your situation. Also speak to the Hepatitis Helpline who may be able to suggest options you hadnt considered.

I would have appreciated knowing about possible long-term side effects at the time that I agreed to go into the treatment program. It may not have changed my decision as it would seem that the odds are fairly small, but it would have changed my current resentment factor. Johns story - Hep Review, ED71, December 2010.

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Avoiding liver damage

You might feel okay now but what if your level of liver damage reaches a point where it makes you feel terrible and it may be too late to do much about it. Whatever your level of fibrosis, you will probably want to reduce your risk of developing long term liver damage. There are some things you cant change: for example, your gender, your virus genotype or your age when you contracted hep C. But there are things that you can change: reduce your alcohol intake try clearing hep C by successful treatment avoiding being overweight cut back on things that hurt your liver (see following pages). Chat with your GP, specialist or nurse about the following lifestyle changes that will help lessen your chance of long term serious liver damage.

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Cut down on alcohol

Drinking less than the Australian general alcohol recommendations (no more than two standard drinks per day whether you are male or female) will help reduce your chance of long term liver damage. If you want to give yourself the best chance for hep C treatment to work, you should consider abstinence from alcohol before and during your treatment course. Studies suggest that controlling and minimising your alcohol intake will help improve your chance of cure. Alcohol use is one of the main complicating factors for those people in the initial workup stage who decide not to proceed. Before you decide for or against going on treatment its important to talk with your treatment clinic CNC or specialist about your alcohol intake.

Avoid smoking
Having hep C is an important reason to consider quitting tobacco: smoking may lead to worsening of gum disease and dry mouth associated with hep C new research shows that smoking can speed up the progression of liver disease in people with hepatitis people who smoke have higher rates of some cancer types if they also have hepatitis smoking increases the risk of severe complications if you have a liver transplant. There are several different services available to help you give up smoking. These include telephone QuitLines and internet Quit websites. Your first step could be chatting to your GP.

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Marijuana
Daily use of marijuana is associated with liver damage. People who use marijuana every day are more likely to have severe fibrosis. On this basis, laying off heavy pot smoking is a good idea. On the other side of the coin while we do not condone or encourage its use occasional (light) use of marijuana has been shown to be helpful for some people in dealing with hep C treatment side effects and coping with treatment drugs. As with alcohol intake, the key message with marijuana is moderation. Services are available to help you manage marijuana use. Phone the Alcohol and Drug Information Service for more information (see page 50) and chat to your GP. Obesity (being overweight) is linked to an increased risk of hep C disease progression.
Image by scott* via Flickr.com

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Maintain a healthy body weight

Being overweight means you might have a harder time with your long term hep C outcome. Research also shows a link between type 2 diabetes and worse long term hep C outcome. What helps cause type 2 diabetes? Eating too much sugary junk food, being overweight and not getting enough exercise. Maintaining a healthy body weight will decrease your long term liver illness risk. It will also help improve your chance of being cured with hep C treatment (see page 19). Develop an exercise and diet plan that helps you reach a healthy body weight. Dont be disheartened if your weight loss takes longer than expected. Even the loss of a few kilograms may help improve the condition of your liver.

Exercise
In addition to diet, losing weight is about getting more exercise on a regular basis. This may not be easy if you are already feeling ill or tired from your hep C. It is important, though, that you try. Perhaps you can find ways to get more enjoyment out of your exercise. Do you prefer to stay indoors or do you like to get out? Consider listening to music while you exercise at home or while you walk or run. Can your walking time become the time you make phone calls to catch up with family and friends? Walking a pet is a good way to get some exercise. Some exercise can involve joining in with other people. Have you thought of golf or working out at a gym? Perhaps a regimented exercise regime like Zumba or Pilates classes might be your thing? The important thing is to find some activity that you enjoy. Speak to your GP or the Hepatitis Helpline for more information or ideas.

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Image by Ed Yourdon via Flickr.com

Two hep C questions Two hep What C questions: will happen What will to me? happen Should to me? I go Should on treatment? I go on treatment? 45

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Diet
Having hep C and eating well is not about special diets. You dont need to avoid red meat or foods with a high iron content. Nor do you need to avoid coffee or dairy products. Its more about sensible eating the sort of approach suggested in The Australian Guide to Healthy Eating (see page 50). Check food labels and avoid products that contain trans-fats, fructose sugars or corn sugars as these products have been shown to cause liver damage. Also take care with herbal medicines. Some can have a toxic effect on the liver while others may be contaminated with harmful substances in the factories where they are prepared. Specialist hep C dietitians can offer practical advice on healthy eating especially if you are homeless or doing it tough. For more info, chat to your GP or the Hepatitis Helpline.

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Image by nicola.albertini via Flickr.com

Avoid other hepatitis viruses

Your doctor may advise you to get vaccinated against hepatitis A and hepatitis B. These two viruses are different to hep C but they also can cause liver damage. Things can get complicated for your liver if you have more than one type of hepatitis at the same time. Vaccination against hep A and hep B will prevent this.

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Further information if you are on OST

Opioid substitution therapy (OST) helps people deal with drug dependence thats related to heroin, morphine, oxycodone, etc. It involves giving people a drug substitute: usually methadone or buprenorphine. If youre on OST, you may have knocked your liver around more than other people. You may be at a higher risk of liver disease if you also have hep C and are approaching your middle-age or later years. Your liver is a very important organ. You need to look after it, and to take the possibility of liver disease seriously. If the Long term liver risk chart suggests you are at risk of advanced liver disease, you should be getting specialist advice through your nearest hospital liver clinic or perhaps via a visiting specialist at your OST clinic. With advanced liver disease, you may have ascites (see glossary), muscle wasting, spider veins in your skin, a loss of body hair. These are just some of the visible signs. In addition to the care that youll get from your specialist and nursing staff, its really important to do whatever you can to look after yourself. For people on methadone or bupe who have advanced liver disease, it is easy to fall into a cycle of feeling better...then some alcohol use...then drug use and heavier alcohol use...then nurse or doctor intervention...then feeling better again. Maintaining a healthy diet as part of your lifestyle can help avoid this cycle. It is certainly something to talk about with your specialist or nursing staff. Some OST clinics have peer support workers. These are people who are on OST or have been on it and who have had hep C treatment. For more information, ask at your clinic reception or phone NUAA (see page 50).

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Recommended reading
Want to know more about hep C treatment or living better with hep C? Check out the following resources. They are available free via the Hepatitis Helpline or from hep C treatment clinics and Needle & Syringe Program outlets. Most are also downloadable from www.hep.org.au What you need to know: a guide to hep C (booklet) Biopsy: the inside story (factsheet) Complementary medicine (factsheet) Diet and health (factsheet) Fatigue (factsheet) Genotypes (factsheet) Heps A, B and C (factsheet) Illness outcome (factsheet) Liver biopsy and fibroscan (factsheet) Liver function (factsheet) Liver transplant (factsheet)
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Stress (factsheet) Support services (factsheet) Symptoms (factsheet) Telling others (factsheet) Testing overview (factsheet) Treatment (numerous factsheets) The Big Combo (DVD) Guide to Healthy Living (booklet) Hepatitis C and Food (brochure) Hepatitis B: what you need to know (brochure) Living with Cirrhosis (booklet) Moving On After Treatment (booklet) Testing Information (booklet) Treat It, Beat It (booklet) Treat Yourself Right (booklet)

Image by pedrosimoes7 via Flickr.com

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Useful contacts
For further information, advice or support, check out the following services:

Hepatitis NSW website

www.hep.org.au

Local GPs (phone the Hepatitis Helpline for a listing of local GPs who have had ASHM hepatitis training) Your local liver clinic (phone the Hepatitis Helpline) Hepatitis Helpline
1800 803 990 (other NSW callers)

HepCaustralasia online peer support forum

http://hepcaustralasia.org

Australian Guide to Health Eating

http://tinyurl.com/4s5un64

Australian Alcohol Guidelines

http://tinyurl.com/79r8mob

NSW Prisons Hepatitis Helpline

Freecalls... on prison phone, enter MIN, enter your pin, press 2 for common calls list, press 3 for Hepatitis Helpline

NUAA (NSW Users Association) NSW statebased drug users community organisation
www.nuaa.org.au

HepConnect peer support service

via the Hepatitis Helpline (above)

ASHM (Australasian Society for HIV Medicine)

www.ashm.org.au

ADIS (Alcohol & Drug Information Service) 9361 8000 or 1800 422 599

Dietitians Association of Australia

1800 812 942 www.daa.asn.au

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Glossary
Ascites An accumulation of fluid in the abdominal cavity. Anaemia A reduced number of red blood cells that causes fatigue and possible shortness of breath. Hep C antibody test Antibodies are substances in the blood and part of the bodys immune system. The hep C antibody test is a type of blood test that looks for presence of antibodies that specifically help fight against hep C virus. A positive antibody test result shows that someone has come into contact with the hep C virus but it cant tell whether they have cleared it in the past or have an ongoing infection. Biopsy Microscopic examination of a small sample of the liver, taken by a special instrument. The actual biopsy procedure takes just a second and is usually done in a day visit to a hospital. It is the most accurate report on the condition of a persons liver. Cirrhosis The bodys general response to serious cell damage is the scarring of affected tissue. Serious liver inflammation leads to scarring of liver tissue. When such scarring is extensive and the structure of the liver may be altered, it is termed cirrhosis. This can interfere with the normal functioning of the liver. Clinical Nurse Consultant (CNC) Specialist nurses at Liver Clinics, OST clinics and private practices who provide clinical monitoring and care, and patient education and support services. Decompensated cirrhosis The liver can often endure a certain amount of cirrhosis before its ability to carry out normal functions is affected. Decompensated cirrhosis is when the level of damage has started to interfere with the livers ability to function properly and is causing symptoms such as weight loss, fluid retention, stomach swelling and bleeding problems.

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Fibroscan test Similar to an ultrasound. It assesses the degree of liver stiffness: the stiffer the liver, the more likely that fibrosis exists. This is becoming a standard monitoring tool annual tests which may show an increase, decrease or levelling of a persons liver fibrosis. Fibrosis Fibre-like formation of tissue involved in thev repair of damaged cells. It is often called scarring. Gastroenterologist A medical specialist working with diseases of the liver, stomach, intestines, oesophagus and related organs. Genotype The particular type of hep C virus that a person has. There are six main genotypes and within each of these there can be several sub-types. Hepatocellular carcinoma Primary cancer of the liver. It is not common and when associated with hep C, is usually preceded by cirrhosis of the liver. Hepatologist A gastroenterologist who specialises in the liver, and who usually works out of a hospital liver clinic.
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IL28B test A blood test that looks at your genetic makeup and how responsive you are to interferon. This can guide how likely you are to respond to combination treatment. The test is currently only useful for people with hep C genotype 1. Infectious disease specialist A medical specialist working with people affected by infectious illnesses. Liver failure Liver failure occurs when the liver becomes so damaged that it is no longer able to function. It is caused by worsening cirrhosis. Treatment may include liver transplant. PCR test A type of blood test that looks for presence of the hep C virus. There are three variations of the hep C PCR test. One can tell if the virus is present in the blood (qualitative test). Another can estimate how many virus particles are present in the blood (quantitative test). The third can tell what particular subtype of hep C virus someone has (genotype test).

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1800 803 990

TALK WITH SOMEONE WHO HAS BEEN THROUGH HEP C TREATMENT

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MY DOCTORS CONTACT DETAILS

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MY LIVER CLINIC DETAILS

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MY TREATMENT DETAILS

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NOTES

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NOTES

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NOTES

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Hepatitis Helpline 1800 803 990 Hepatitis NSW p: 02 9332 1853 f: 02 9332 1730 PO Box 432 Darlinghurst, NSW 1300 info@hep.org.au 414 Elizabeth Sreet Surry Hills Sydney 2010 www.hep.org.au

Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.
ABN 30 408 095 245 A non-profit health promotion charity funded by the NSW Health Dept. Accredited by the Quality Improvement Council of Australia (QIC). Donations of $2 and over tax deductible