Introduction

People affected by hepatitis C come from a wide range of backgrounds. Whether you are someone living with hepatitis C, family member or friend, health care professional working in this field, employer or work colleague or any other interested person, this information aims to provide a general overview of hepatitis C.

Please note it does not aim to replace the advice which would be provided by a doctor or other health care worker. People who have hepatitis C should regularly see their doctor, who can provide monitoring, up-to-date information, advice, and counselling if needed.

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Contents

1. What is hepatitis C?

2. What is a virus?

3. Where did the hepatitis C virus come from?

4. How many people have hepatitis C?

5. How does hepatitis C affect people?

6. What does the liver do?

7. Hepatitis C and cirrhosis

8. How is hepatitis C passed on?

9. Who should have the HCV test?

10. How is hepatitis C diagnosed?

11. What is a PCR test?

12. How can someone tell what's happening to their liver?

13. What is a liver biopsy?

14. What therapies exist for treating hepatitis C?

15. What is meant by the term, response?

16. Self management

17. Hepatitis C and diet

18. Injecting drug use and hepatitis C

19. Hepatitis C and women

20. Issues for partners, families and friends

21. How does hepatitis C affect children?

22. Telling others

23. What can be done about discrimination?

24. What can people do in regard to work?

25. What about insurance & superannuation?

26. Centrelink & job seeking

27. Where can people get advice or help?

What is hepatitis C?

The word hepatitis means inflammation or swelling of the liver. It can be caused by chemicals or drugs, by drinking too much alcohol or by different kinds of viruses.
There are a number of hepatitis viruses (including A, B, C and D) but they are all completely different from one other. They cause different illnesses and may require different treatments.

There are vaccines against hepatitis A virus (HAV) and hepatitis B virus (HBV) but not against hepatitis C virus (HCV). For people with hepatitis C, vaccination against HAV and HBV is recommended (see What therapies exist for hepatitis C?)

When people contract the hepatitis C virus, their bodies produce antibodies to try to destroy it. In most cases, a person's antibodies don't identify the hepatitis C virus properly and the infection becomes chronic (long-term). Most people with hepatitis C don't know that they have it because some will never experience symptoms while for others, symptoms take an average 10-15 years to develop. Some people may have hepatitis C for 20 years or more before realising they have it.

Hepatitis C does not always damage the liver. If a person has symptoms, they might feel tiredness, abdominal discomfort or nausea. It is difficult to predict what will happen for any one person.

What is a virus?

Viruses are minute organisms capable of infecting almost all animals and plants. There are many different kinds. Hepatitis C virus affects only humans.

Viruses are composed of an outer skin that encases a core structure. They cannot exist independently and rely on genetic material 'borrowed' from host cells for their reproduction. Viruses are so small that it is hard to understand. HCV is estimated to be 80 nanometers in diameter (around 30 billion would fit on this dot . ).

Where did the hepatitis C virus come from?

It is believed that HCV has existed for thousands of years. Before 1990, hepatitis C used to be called non-A non-B hepatitis. Doctors could only guess what was causing non-A non-B hepatitis until, in 1988, using genetic engineering, scientists discovered the virus responsible for causing the illness and called it hepatitis C virus.

HCV can mutate or change slightly at a rapid rate and this is believed to be one explanation why the human antibody response does not eliminate the infection. By the time someone's antibodies are ready to attack the virus, it has changed slightly and the person's antibodies have trouble recognising it.

Although it is much easier to talk of the hepatitis C virus as if it is a single organism, in fact it is a group of viruses, similar enough to be called hepatitis C virus, yet different enough to be classified into subgroups.

Genotypes
Several identifiable 'families' of hepatitis C virus have been observed around the world, differing slightly from each other in their DNA sequencing (genetic make up). The most commonly used classification system lists these 'families' as HCV genotype 1, 2, 3, etc.

Subtypes
Within each genotype, there is further difference between viruses - too small to be seen as a new genotype but significant enough and measurable, thus forming HCV subtypes. These lesser classifications are described as HCV subtype 1a or 1b, etc.

Quasispecies
Within a person's HCV subtype or subtypes, incredibly minute differences will exist among individual viruses. The differences are not significant enough to form a distinct subtype. Instead they form what's known as quasispecies. It is believed that within an HCV subtype, several million quasispecies would exist. Scientists predict that people who have hepatitis C have billions of actual viruses circulating within their body. Although there may be one or two predominant subtypes, the infection as a whole is not a single entity and is composed of many different quasispecies.

Australian patterns: It is estimated that in Australia, approximately:

• 35% of people with hepatitis C have subtype 3 (mostly being 3a)
• 35% have 1a
• 15% have 1b
• 7% have subtype 2.

The remaining people have other genotypes.

How many people have hepatitis C ?

Around one in every 100 people in Australia has HCV.

It is estimated that more than 210,000 Australians have been exposed to the hepatitis C virus. Since HCV testing became available in 1990, more than 140,000 people have returned a positive hepatitis C antibody test. At one percent, Australia's estimated HCV prevalence rate is slightly lower than most countries.

How does hepatitis C affect people?

Hepatitis C affects people differently. Some are not affected by it while others can be affected seriously.

Generally speaking, it is believed that around three out of four people with hepatitis C will not go on to develop cirrhosis (scarring of liver cells).

Over a 25-50 year period of infection, it is believed that less than one in 10 people with hepatitis C would develop liver failure or liver cancer.

Hepatitis C infection involves an acute (initial) phase of infection which is usually not noticed and lasts up to six months. During this phase, levels of the virus in the blood rise dramatically until the body's immune response starts producing antibodies. Although our antibodies fight the virus, in around 75% of cases the virus is not eliminated and approximately three out of four people are left with a chronic (long-term) infection.

Some people with chronic infection don't have any noticeable liver damage or symptoms. These people remain well, but their blood is infectious and they should take care to reduce any risk of passing the virus on to others.

Over time, the majority of people with hepatitis C will develop different levels of liver damage that will result in hepatitis C symptoms. These could include tiredness, nausea or abdominal discomfort. Sometimes symptoms can be disabling even though there may be only minimal liver damage.

Over a 20 to 40 year period, chronic infection may result in cirrhosis. This is not life-threatening in itself but after a further 5 to 10 years, extensive cirrhosis may result in liver failure or cancer of the liver. Liver failure may be treated by liver transplant. A new liver will be affected by residual HCV (in the bloodstream) and liver inflammation will often occur at an increased rate.

It is important to note that hepatitis C infection doesn't always make people feel ill. For those people who do become ill, symptoms take a long time to develop (approximately 10 to 15 years). Symptoms can stay at a certain level and don't always get worse. They can come and go with no real pattern.

What does the liver do?

The liver is one of the largest organs in the body and plays an important role in hundreds of vital body functions.

Some of the liver's many functions include:

• serving as an internal chemical power plant, converting the food we eat into stored energy and chemicals necessary for life and growth
• acting as a filter, helping remove alcohol and other toxic substances from the body
• processing hormones, drugs and medications so the body can use them effectively and ultimately dispose of them
• processing and manufacturing energy and the many chemical substances needed by the body - and "labelling" them so that when needed, they can be sent to specific parts of the body.

Hepatitis C and cirrhosis

If liver inflammation is serious enough or continues for a long period of time, liver cells become very damaged and may develop into scar tissue. This scar tissue is called cirrhosis. It can be caused by many different liver diseases. In Australia the most common causes are excess alcohol and hepatitis C infection.

A diagnosis of cirrhosis means that liver injury has led to the build up of fibrous scar tissue in the liver to such an extent that the microscopic structure or "architecture" is affected. This scar tissue affects the blood flow through the liver and the function of the cells in the liver. Because the scar tissue affects the microscopic structure of the liver, it can only really be diagnosed by liver biopsy (examining a tiny sample of liver tissue through a microscope).

It is estimated that between 10% and 20% of people with chronic hepatitis C will develop cirrhosis - after 20 to 40 years of infection. Although cirrhosis is not life-threatening in itself, it means people are at increased risk of developing liver failure or liver cancer.

People with cirrhosis are less likely to achieve a sustained response to interferon therapy. Their response rate to interferon monotherapy is only about half that of those who do not have cirrhosis. Because of this, monotherapy is not provided under the Pharmaceutical Benefits S100 highly specialised drugs program to people with cirrhosis.

Although people with cirrhosis are also less likely to enjoy a sustained response with interferon and ribavirin combination therapy, the Australian government does provide subsidised combination therapy in many cases. This is because research has shown considerable long-term benefit with combination therapy even if a sustained response is not achieved. Typically, this involves a slowing down of more serious liver damage in those cases where it would have occurred.

How is hepatitis C passed on?

Transmission of the hepatitis C virus occurs when blood from someone with the virus enters the bloodstream of someone else.

Sharing or reusing other people's needles and syringes
extremely high risk

Sharing or reusing other people's injecting equipment
very high risk

Unsterile tattooing and body piercing
high risk

Mother to baby, before or during birth
moderate/low risk

Health care worker, needle-stick and sharps injury
moderate/low risk

Sharing of razor-blades and toothbrushes
moderate/low risk

Blood transfusion and blood products, before Feb 1990
low risk

Sexual activity (without blood to blood contact)
very low risk

Blood transfusion / blood products, after Feb 1990
extremely low risk

Breastfeeding
extremely low risk

Sharing injecting drug equipment
This is the most common way of transmitting HCV in Australia. The highest risk comes from sharing needles and syringes (fits) but all injecting equipment can potentially spread HCV, including spoons, filters, water, tourniquets and swabs. Blood on fingers and work surfaces also involves transmission risks. Although it is safer to inject in the company of other people due to the risk of drug overdose, sharing any equipment is likely to lead to transmission of hepatitis C and other viruses. People who are already infected can become reinfected with different genotypes (strains) of hepatitis C and experience another initial acute stage of infection. Because of the many possible risk factors involved with injecting drug use, some experts believe the safest way of taking drugs is to smoke, drink or eat them. (Also see Injecting drug use and hepatitis C).

Unsterile tattooing and body piercing
Tattooing and body piercing are not always carried out under sterile conditions. People should make sure that their tattooist or body piercer uses standard infection control practices. In choosing their tattoo or body piercing studio, people should look for clean hygienic premises (such as benches, sinks and other work areas). They should ask the tattooist whether they use new needles each time and if they reuse needles, ask how they are sterilised. Ideally, people should be able to watch someone else being tattooed. While watching, potential customers can observe whether new disposable gloves are worn for each client, whether the tattooing equipment that is used comes from sterile containers or bags, whether the tattooist opens prepackaged sterile equipment in front of clients, whether they use small separate containers of ink for each client instead of dipping into one big container that many clients would use and whether the tattooist explains everything to the customer.

Blood banks
Blood banks began testing for hepatitis C virus once tests became available in 1990. Before that, blood transfusions and blood products carried some risk and up to 10% of people with hepatitis C are believed to have contracted HCV through the blood supply. Blood banks now test all donated blood and the risk of HCV transmission through donated blood is extremely low; less than a one in 100,000 risk.

Mother to baby (vertical) transmission
If a baby born to a hepatitis C positive mother is tested at birth for hepatitis C antibodies, the test will come back positive. This is because the baby has its mother's antibodies, which clear naturally over a period of months. A PCR blood test done at 4-6 weeks will indicate whether the baby has contracted the virus, as would an antibody blood test done at 18 months.

It is recommended that babies born to HCV positive mothers are not given antibody tests until 18 months of age. Less than 10% of babies born to mothers with HCV actually acquire the virus. Mothers who contract HCV during pregnancy, or those with serious liver damage may have a higher risk of transmitting the virus. There is believed to be practically no transmission risk for expectant mothers who test PCR negative (see What is a PCR test). Overall, the risk of vertical transmission is low and the outlook for babies who do contract HCV is believed to be similar to that for adults with HCV.

Occupational transmission
Usually related to health care workplace, occupational transmission can occur through needle-stick (or sharps) injuries but it is uncommon. With needle-stick injuries involving hepatitis C infected blood, the risk is believed to be 4% (four in every 100 such incidents). With needle-stick injuries involving hepatitis B infected blood, the risk is believed to be 30% (30 in 100) and for HIV the risk is estimated at 0.4% (four in 1000). To minimise the risk of such viral infections, health care workers are advised to practice standard infection control precautions.

Household transmission
This is rare and could only occur where blood-to-blood contact happens. This might involve one person's blood spill coming into contact with someone else's open cut. To a lesser extent, transmission may occur through the sharing of razor blades, toothbrushes and sharp personal grooming aids - and it is advisable that people keep these utensils separate among household members. To help prevent transmission of a range of bloodborne communicable diseases in the home, all people should wear gloves when administering first aid or cleaning up blood and body fluid spills.

First Aid Precautions
The skin is our first line of defence against infection. People should make sure they have no uncovered cuts, abrasions or dermatitis. Rubber gloves should be worn when dealing with blood or other body fluids. Disposable materials (eg. paper towel) should be used when cleaning up blood or other body fluid spills or splashes. Any surfaces which have had blood or other body fluid spills or splashes should be cleaned with detergent and water. If contact does occur, people should wash the blood or body fluid away as soon as possible, preferably with soap and water; if necessary, rinse away from the eyes, nose and mouth with plenty of water. Injuries such as cuts and needlesticks should be washed with normal saline or soapy water, encouraged to bleed and then covered using a waterproof dressing. In the workplace, any accidental exposure should be reported to the relevant workplace policy.

Sexual transmission
Sexual transmission of hepatitis C is very uncommon. If it happens, it is believed to be as a result of blood-to-blood contact during sex. If people have any medical condition that involves scratching, sores or blisters in the genital region, the possibility of blood-to-blood contact and transmission during sex is increased. When one partner is hepatitis C positive, couples need to reassess their sexual practices to exclude the risk of blood-to-blood contact during sex. Using condoms and dams when a female partner is menstruating or when having anal sex is recommended. It is also advisable to use a water-based lubricant to avoid condom breakage or skin abrasion during sex. Risk of sexual transmission is thought to be influenced by a person's viral load (amount of virus in the blood). The risk of transmitting hepatitis C sexually is possibly increased during the initial acute phase of infection which lasts up to six months after catching the virus. Overall, sexually active people should consider the benefits of safe sex in regard to the wide range of sexually transmissible diseases.

Breastfeeding
The hepatitis C virus has not been found in samples of breastmilk taken from hepatitis C positive women. Transmission via breastmilk has not been shown to occur. There are many advantages to breastfeeding for the mother and baby, and the choice to breastfeed or not should be left up to parents. Breastfeeding mothers should check their nipples before each feed and avoid breastfeeding if they are cracked or bleeding.

Blood & organ donation
People with hepatitis C must not donate blood or organs.

Vaccination?
Currently, there is no vaccine or immunisation to protect people against HCV infection.

Who should have the HCV test?

• People who have had blood transfusions or blood products before February 1990
• People who have ever injected drugs (including steroids)
• People who have tattoos
• People with body piercing
• People who have ever had a needle-stick injury
• People with abnormal liver function tests or who are
• experiencing hepatitis C like symptoms but have no apparent cause
• Health care workers who perform exposure prone procedures.

How is hepatitis C diagnosed?

Screening tests for hepatitis C virus are called HCV antibody tests. These tests do not look for the virus itself, but look for HCV antibodies (defence cells which the human body produces to fight HCV). A positive test result implies that someone has an HCV infection or has had one in the past. If the test result is unclear it is repeated and, if necessary, other types of blood tests are done.

Antibody tests
These indicate whether a person has had an HCV infection but cannot determine whether or not someone currently has the virus or how long they might have had hepatitis C.

After contracting the virus, it can take up to six months before the body seroconverts (starts producing antibodies). During this time someone is said to be in the window period. If they are experiencing an active HCV infection they could still return a negative antibody test.

People who return a positive result but have no risk history should be advised to have the test redone.

HCV antibody tests are free if people take their Medicare card to a doctor who bulk bills. As with all test results, people are advised to ask for photocopies of the written test results. Should someone change doctors or want to get a second opinion, they then have their own records to show to other doctors or specialists.

HCV counselling services
These are also known as pre- and post-test counselling, are generally provided by a GP and have three main aims:

• to provide information and support during what may be a period of considerable anxiety
• to help ensure good management and treatment
• to help prevent possible transmission of the virus.

With HCV counselling, doctors should briefly discuss: reasons for having a test done, the history of HCV, implication of test results (negative or positive), routes of transmission, general outcome of infection, treatment options, self-management strategies, implications for life assurance and confidentiality. Doctors should also check if people have adequate emotional support in case of a positive test result. Doctors should provide all the information that allows a person to make their own decision whether or not to be tested. They should also be able to refer people to counselling services and/or community support services.

What is a PCR test?

PCR tests detect or measure the actual hepatitis C virus in a sample of blood. They can tell if someone has hepatitis C virus or just has antibodies from a past infection. There are three types of PCR test - viral detection, viral load and viral genotype. Each test provides different information about a person's hepatitis C infection.

PCR stands for polymerase chain reaction. The development of these tests over the last few years is now being seen as a major advance in regard to both clinical assessment of people with hepatitis C and the monitoring of treatments. These tests assist people to:

• Determine whether they may have cleared the virus (but still have antibodies)
• Determine their level of infectivity
• Confirm inconclusive hepatitis C antibody test results
• Assess their response to treatment.

PCR viral detection test
Sometimes called the "qualitative test", the PCR viral detection test is mainly used as a confirmatory test when an antibody test result is inconclusive. It is also used 4-6 weeks following a risk incident, within the six month window period when antibody tests may be unreliable, to check if someone might have contracted HCV. The test can also be used to determine whether someone is infectious when they have consistently normal liver function tests. The PCR viral detection test can also be used by HCV positive pregnant women to determine the chance of them transmitting HCV to their child. If a mother is PCR positive, there is up to a one in 10 chance of her baby being born with the virus. If a mother is PCR negative, the risk of HCV transmission to her baby is negligible.

PCR viral load test
Sometimes called the "quantitative test", this PCR test measures the amount of HCV circulating in someone's blood. Measuring the level of virus in someone's blood before treatment can help determine whether a 6 or 12 month treatment regime is preferable. It is also believed that PCR viral load testing as early as 2-4 weeks into treatment will identify people who wouldn't respond over the full 12 months treatment period.

PCR viral genotype test
PCR genotype tests can determine what HCV genotype and subtype a person has. This may be useful information as it has been shown that people who have particular genotypes generally respond better to drug treatment. People who are keen for treatment may not worry too much about PCR genotyping. For others who aren't sure whether to try the treatment or not, the PCR genotype test could help guide their decision (see What therapies exist for treating hepatitis C?).

Availability - basic viral detection test
The basic PCR viral detection test is covered under the Medicare Benefits Schedule (under item no. 69444) for use in certain circumstances:

• people who have had a positive HCV antibody test and who have normal liver function test results on two occasions six months apart, or
• people who have inconclusive HCV antibody test results, or
• people who have weakened immune systems (eg. HIV/AIDS) and want to confirm whether they are hepatitis C positive or not, or
• detecting acute hepatitis C, prior to seroconversion (production of antibodies), in those people who have signs of acute hepatitis yet other causes have been excluded (eg. HAV or HBV).

PCR testing is made available in these cases (one test annually per person) where this information is considered necessary for the clinical management of the person's hepatitis.

Availability - viral genotype & viral load tests
All three PCR tests are covered under the Medicare Benefits Schedule (see Item numbers below) for use under certain circumstances. The requests for these monitoring tests are limited to treating specialists and are for people with confirmed hepatitis C (by antibody or previous PCR) who may undertake antiviral therapy depending on the result of testing.

These additional funded access arrangements allow for:

• One PCR viral load test prior to therapy (Item no. 69442) should someone decide to proceed with interferon or combination therapy (one test annually per person)
• One PCR genotype test (Item no. 69443) - when initially considering treatment options
• Up to four PCR viral detection tests (Item no. 69445) prior to and over a 12 month treatment/follow up period - to help monitor treatment response.

The maximum number of PCR viral detection tests for any course of treatment is four, including any provided under Item 69444 (see above).

Important note
PCR tests look for virus in the blood. Levels of virus in people's blood can fluctuate and, at times, the level of virus in someone's blood might be too low for the PCR test to detect it. Therefore, a negative PCR test result may not always mean that a hepatitis C antibody positive person doesn't have hepatitis C. It may only mean that the test couldn't detect the virus in that particular sample of blood. For this reason, people should rely on a series of at least two PCR tests done over a 4-6 month period, rather than a single PCR test.

How can someone tell what's happening to their liver?

Liver function tests are used to measure the general condition of the liver. These blood tests give useful information but for a more accurate indication of the condition of the liver, a liver biopsy would be required.

Liver function tests measure levels of particular enzymes or proteins in a person's blood. If liver cells are damaged, increased levels of these substances "leak out" into the bloodstream and show up as raised or abnormal results in liver function tests. The tests provide only a rough indication of possible liver damage. ALT is the most commonly monitored enzyme in liver function tests. Because of differences in laboratory technology, 'normal ranges' quoted by laboratories may differ. When comparing ALT results from different laboratories, the ALT result should be stated against the normal upper range quoted by each lab on the test result (eg. 70/50, meaning an ALT of 70 compared to the laboratory's normal upper range of 50).

A doctor can offer ongoing evaluation of people's condition by interpreting differences in their liver function test results over time, and whether or not they have physical symptoms or signs of liver disease. Liver function tests may be suggested monthly or up to once per year depending on a person's condition and whether they have been recently diagnosed.

Liver function tests do not provide conclusive evidence of what is happening in the liver. Some people may feel quite ill yet have little liver damage. For other people, damage may be occurring even when liver enzyme levels are normal. It is important to remember that raised liver function test results may be caused by medical conditions other than HCV. In cases where ALT readings are consistently high for a long time, where they fluctuate greatly or when readings don't seem to match with how a person feels, a specialist may suggest a liver biopsy be done. Some doctors recommend a routine liver biopsy after 15 years of infection and then every five years thereafter.

What is a liver biopsy?

A liver biopsy provides the most accurate report on the condition of someone's liver. Using a special instrument, a specialist doctor takes a small sample which is then examined under a microscope. The actual biopsy takes about one second. People usually remain at hospital after the biopsy for at least six hours or even overnight.

Ultrasound and other x-rays can indicate certain liver-related abnormalities but have difficulty distinguishing cirrhosis from other conditions such as fat accumulation in the liver. This is particularly true in early cirrhosis. The diagnosis of cirrhosis can only really be made by liver biopsy.

The presence or absence of cirrhosis is only part of the information available from liver biopsy. Apart from showing the amount of scar tissue (an indication of what has happened to the liver in the past), liver biopsies also show how active the hepatitis C is now, and if there are other factors interacting with the hepatitis C to damage the liver. These other factors include excess alcohol, iron accumulation in the liver or evidence of autoimmune disease (when the body's own immune system attacks liver cells).

After the skin is sterilised and an injection of local anaesthetic given, a special instrument passes a needle between the ribs into the liver. A small sample is taken for microscopic examination. Sometimes doctors may do the procedure using an ultrasound machine to guide them. People with blood clotting disorders may be advised not to have the procedure because of the risk of internal bleeding.

Some people experience pain during the procedure while others don't even realise it has been done. Local anaesthetic is always used but if anyone is especially concerned about pain or especially anxious, they should ask for some medications for pain and to help calm them down. After the procedure, people are asked to lie still for several hours. It's a good idea to take a favourite book or music (don't forget the headphones).

A week or two later, people are given results to take back to their GP. It's a good idea to ask for a photocopy in order to keep a set of personal records. Some doctors recommend a routine liver biopsy after 10 to 15 years of infection and every five years thereafter.
About one in every 300 people who have a liver biopsy could have a serious complication such as bleeding from the surface of the liver. This would usually mean staying in hospital for a day or two and may require an operation, although this is rare. About one in every 1000 people who have a liver biopsy could experience more serious complications. Although certain risks exist, they need to be balanced against the benefits of more precise knowledge of what is happening in the liver.

Liver biopsies are not recommended lightly. Because of the relatively low, but none the less real risk associated, the final decision to proceed with biopsy should be made by the individual person. Anyone interested should discuss the procedure and possible risks with their doctor.

Is biopsy an accurate guide to what is happening in the whole liver?
A liver biopsy sample is just a tiny piece of the liver but a properly taken sample is generally representative of changes throughout the liver. Hepatitis C affects the whole liver and although there may be some variation within the liver, this would be a minor, rather than major, variation.

How do doctors make sense of a biopsy result?
A doctor will usually explore two major issues in looking at the liver biopsy:

Firstly, are the features consistent with HCV as the cause of the liver test abnormalities? ie. are there other liver illnesses present?

Secondly, if the biopsy is consistent with HCV, then how badly is the liver damaged? Using the Scheuer Score model, this can be estimated by studying three main parameters:

• the amount of portal inflammation - this is the inflammation around liver cells, bile ducts and veins in parts of the liver
• the amount of lobular inflammation - this is the amount of inflammation in seperate lobules (the left, right and smaller subdivisions of the liver)
• the amount of fibrosis - this is an early stage in the development of liver cell scarring (cirrhosis).

These three features may be given scores of 0-4, where four is the worst scenario. Thus the overall biopsy may be scored out of 12. The first two parameters (portal and lobular inflammation) are often called the grade of liver damage whilst fibrosis may be referred to as the stage of liver damage.

It is the stage of liver damage that can give an idea of the chances of progression to cirrhosis over the next 10 years or so. Stage 4 fibrosis is already cirrhosis, whilst stage 1 fibrosis may possibly only progress to stage 2 over 10 to 20 years.

A similar liver biopsy grading, the Metavir Score, is used within prescribing guidelines for government subsidised S100 combination therapy, although Australian clinicians most commonly use the Scheuer score (above).

What therapies exist for treating hepatitis C?

The best course of treatment currently available involves a combination of two drugs: interferon and ribavirin.

Current government subsidised treatment involves either interferon monotherapy or combination therapy (interferon and ribavirin). Conditions apply to both these government subsidised treatments (see following).

People wanting to access drug treatment outside of the government subsidised scheme can purchase treatment drugs at full price or may be able to access them through industry-sponsored Special Access Schemes (see Alternative access to treatment).

Some people with hepatitis C use complementary or alternative treatments to counter symptoms of hepatitis C. For example, traditional Chinese medicine which includes a mixture of acupuncture or Chinese herbs or both; homeopathy and herbalism. If people decide to try alternative therapies, it is important they see a qualified natural therapies practitioner.

Whatever treatment choice is made, it is important that people find out as much as possible about the different options. Natural or complementary therapists should work alongside GPs who can monitor progress and possible side effects.

Many doctors advise people with hepatitis C to have the hepatitis A and B vaccinations. Although the viruses are unrelated, such vaccinations will help prevent possible additional liver complications caused by having more than one viral infection at the same time.

Interferon monotherapy
Interferon works by helping the body fight the virus and helping prevent the virus from multiplying. On its own, it leads to a good long-term response for only around 10-25% of people who try it.

Interferon treatment nearly always involves side effects. Experience of side effects varies with some people reporting no problems at all. Others find the side effects so unpleasant they stop treatment. Side effects may gradually lessen as a person's body develops a natural tolerance to the drug, and most will usually stop when treatment finishes.

Side effects can include flu-like symptoms such as fever, chills, lethargy, muscle pain, depression and mood swings. Less common side effects can include mild temporary hair loss, blood disorders, thyroid disorders, skin lesions and worsening of psoriasis (a skin disorder).

When considering treatment, people should be aware of the possible side effects before making a decision. If concerned, they may decide to postpone treatment until a particularly demanding work project or other personal commitment is completed.

Treatment with interferon has been associated with depression and suicide in some people. A psychological assessment should be undertaken for all people before treatment. Those with a history of suicidal ideation or depressive illness should be aware of such risks, and wellbeing during therapy should be closely monitored.

Subsidised interferon is available through the Pharmaceutical Benefits Scheme S100 category for people who meet the criteria listed below. Treatment centres exist in every state and should offer the following facilities: a nurse educator/counsellor for patients, 24 hour patient access to medical advice, a day-stay liver clinic and facilities to do safe liver biopsies.

To access subsidised S100 interferon monotherapy people need to meet the following requirements:

• Have histological (microscopic) evidence of chronic hepatitis on liver biopsy (except in patients with coagulation (blood clotting) disorders considered severe enough to prevent liver biopsy)
• Have abnormal ALT levels in conjunction with documented chronic hepatitis C infection, ie. repeatedly antibody test positive and/or HCV-RNA (PCR viral detection test) positive
• Have no other forms of chronic liver disease
• Women of childbearing age must not be pregnant, not breastfeeding, and must be using an effective form of contraception.

The treatment course is limited to 3 million units subcutaneously (injected under the skin) three times weekly for up to 52 weeks. S100 treatment is stopped if HCV RNA remains detectable (PCR viral detection test positive) after 12 weeks of therapy. The course of treatment must be continuous and excludes retreatment of people who have previously not responded or who have relapsed.

Combination therapy
Government subsidised S100 combination therapy consists of interferon and ribavirin, marketed under the name "Rebetron". It involves a six month course of interferon injections (three times a week), and ribavirin capsules (taken twice a day). People are asked to visit their GP or specialist for follow-up visits during and after treatment.

Studies have shown that people are more likely to have a sustained response with combination therapy than with interferon alone. Overall, a person's chance of responding well to combination therapy is related to their hepatitis C genotype and the amount of virus in their blood. To date, genotypes 2 and 3 have been shown to have a higher response rate (60-70%) to combination therapy than genotypes 1 or 4 (20-30%).

If people have responded to previous interferon monotherapy but then relapsed, there is still a good chance of response with combination therapy. Those who did not respond to previous interferon have only a low chance of responding to the combination therapy.

Side effects of combination therapy vary for each person and appear to decrease as treatment continues. They are similar to those experienced with interferon alone. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People's blood counts are monitored very closely, especially in the first few weeks, and doctors may reduce the ribavirin dose if necessary.

As emphasised in the monotherapy section, treatment with interferon alfa has been associated with depression and suicide in some people. Those with a history of suicidal ideation or depressive illness should be warned of such risks, and wellbeing during therapy should be closely monitored.

Additionally, ribavirin has been linked to birth defects and must not be given to pregnant women. Pregnancy in women undergoing treatment and the female partners of male patients must be avoided during treatment and during the six month period after cessation of treatment.

Subsidised S100 interferon combination therapy is made available to people who have not had previous interferon treatment, or to those who relapsed following previous interferon alfa-2a/2b monotherapy treatment (where such monotherapy would have complied with the criteria for PBS subsidy). All people seeking subsidised S100 interferon combination therapy need to satisfy all of the following additional criteria:

• For people who have not had previous interferon monotherapy: Have histological evidence of stage 2,3 or 4 fibrosis (Metavir or equivalent other index), or stage 1 with grade A2 or A3 inflammation (moderate to severe inflammation, see note below) evident on liver biopsy, except in patients with coagulation disorders considered severe enough to prevent liver biopsy
• For people who have previously relapsed with interferon monotherapy: Have histological evidence of chronic hepatitis on liver biopsy, except in patients with coagulation disorders considered severe enough to prevent liver biopsy
• Have abnormal serum ALT levels in conjunction with documented chronic hepatitis C infection, ie. repeatedly HCV antibody positive and/or HCV-RNA (PCR viral detection test) positive
• Pregnancy must be avoided during treatment. Thus, women of childbearing age must be not pregnant, not breastfeeding, and they and any male sexual partners must use two effective forms of contraception during sex, that is, one form of contraception for each partner (eg. she taking the contraceptive pill and he using a condom)
• Men undergoing treatment and any female sexual partners must each use effective forms of contraception during sex (as above)
• The female partners of men who are undergoing treatment must not be pregnant.

For people, previously untreated, the course is limited to 24 weeks, except for those with genotype 1 and those with hepatic cirrhosis or bridging fibrosis (regardless of genotype), for whom the treatment course is limited to 48 weeks. After the first 24 weeks of therapy, people eligible for 48 weeks treatment may only continue therapy if HCV is not detectable by an HCV-RNA qualitative assay (PCR viral detection test).

For people who have relapsed after prior therapy, the treatment course is limited to 24 weeks. After 12 weeks of therapy, treatment is to cease if HCV remains detectable by an HCV-RNA qualitative assay (PCR).

For further information on the Metavir Score, see How do doctors make sense of a biopsy result.

S100 treatment co-payments
Although S100 drugs are free, a monthly administrative co-payment is required. The level of co-payment ranges from $3 to approximately $25 and depends on whether someone is attending a private or public treatment centre, and whether they are a health care or seniors card holder, pensioner or war service veteran, etc.

Alternative access to treatment
People wanting to access interferon-based therapy outside of the government subsidised S100 scheme can purchase treatment drugs at full price through a specialist or seek access through industry-sponsored special access programs. For more information, people should contact their nearest treatment centre.

Monitoring therapy
The development of PCR testing over the last couple of years is now being seen as a major advance in regard to both clinical assessment of people with hepatitis C and the monitoring of treatments.

PCR viral detection tests, sometimes called "qualitative testing", used during treatment can also help monitor whether interferon therapy is working well or not. Rather than measure ALT, a potentially unreliable sign of liver function, PCR can now be used to detect virus in the blood. With interferon being designed to kill HCV, it certainly makes more sense to monitor the virus rather than simply measure liver function.

PCR genotype testing can determine what subtype of hepatitis C virus a person has. This is very useful information, as it's been shown that of the known HCV genotypes, interferon works better for people with genotypes 2 or 3 (60-70% sustained response rate) than those with genotype 1 (20-30% sustained response rate). People should be provided with this information before commencing therapy.

Complementary therapies
To date, there have been few HCV research trials in Australia to check the effectiveness of complementary therapies, also known as natural or alternative therapies. Good results have been reported by some people using complementary therapies but others have found no observable benefits. Some people may choose complementary therapies as a first or a last resort. Others may not use them at all. Some may use them together with pharmaceutical drug treatments. Whatever people choose, they should be fully informed. It's advisable that people ask searching questions of the practitioner they go to:

• How has their therapy helped people with hepatitis C?
• Is the treatment dangerous if you get the prescription wrong?
• What are the side effects?
• Is the practitioner a member of a recognised complementary therapies organisation?
• How much experience have they had of working with people with hepatitis C?
• How have they measured the health outcomes of their therapy?
• How do they aim to help?

People have the right to ask any question of any health practitioner and expect a satisfactory answer. If not satisfied, a person should consider shopping around until they feel comfortable with a practitioner. A Medicare rebate cannot be claimed when visiting a complementary therapist. Some private health insurance schemes cover some complementary therapies. It pays to ask a therapist about costs and payment before visiting them.

As with any treatment, wrongly prescribed medicines can be harmful - some can even damage the liver. If deciding to use complementary therapies, it's vital that people see a practitioner who is properly qualified. It is also advisable for people to talk to their medical doctor or specialist and complementary therapist about the treatment options under consideration - and it's best if they are all able to consult directly with one another. It's also important for someone to continue having their health monitored by a GP. If a complementary therapist suggests that someone stops seeing their medical specialist or doctor, or stop a course of pharmaceutical medicine, the person should consider changing their therapist.

What is meant by the term, response?

Response can have several different meanings in regard to treatment.

Non response
No normalisation of ALTs after 12 weeks of treatment.

Partial response
One value (such as ALT) becomes normal while undergoing treatment, yet another value remains abnormal, eg. positive PCR viral detection test (see p12).

End of treatment response
Measurement values (ALT, PCR, etc.) at the end of a treatment period.

Complete response
Normalisation in all areas of measurement during or after treatment, including PCR tests, liver function tests and sometimes liver biopsy as well.

Sustained response
This is the one that everyone would hope for. It refers to a complete response that lasts six months or more after therapy finishes. In most cases, sustained response lasts indefinitely and a person may consider themselves cured. Many more people who have had interferon need to be followed-up to confirm this.

Self-management

People with hepatitis C should consider the following self-management actions:

• Stop drinking alcohol or cut down alcohol intake
• Consider having hepatitis A and hepatitis B vaccinations (see treatments section)
• Eat a well-balanced diet to help maintain good health
• Learn how to manage stress, rest when feeling unwell and seek counselling if needed
• When taking prescription or over-the-counter drugs, check with a GP and follow the directions carefully
• Lessen stress levels by talking to close friends or close family members about their feelings or problems
• If injecting drugs, use safer injecting methods (see Harm reduction).

As with any chronic disease, maintaining physical and psychological health will help people cope with any symptoms and illness. Controlling alcohol use, eating a healthy balanced diet, sensible exercise, managing stress, discussing and sharing emotions, getting adequate rest and giving up smoking will all help to keep a person as healthy as possible. Although there is no proven link between diet and progression of hepatitis C, some people with the condition do report feeling better when they avoid particular foods (eg. fatty or highly spiced).

Alcohol
The risk of developing cirrhosis appears to be higher for people with HCV if they also ARE heavy drinkers (see definition, below). A reduction in alcohol intake should be the first step in any attempt to reduce the possible risk of serious liver damage. This is also an important step before considering treatment options.

Alcohol recommendations
People who have hepatitis C would benefit from cutting out alcohol use altogether, or reducing it below the following recommendations for people in the general community who don't have liver illness:

• Women should drink no more than two standard drinks per day (see definition, below)
• Men should drink no more than four standard drinks per day
• Everyone who drinks regularly should have at least two alcohol-free days per week
• Avoid binge drinking (drinking lots in a short period of time).

Alcohol tips
People who find it difficult managing their alcohol intake should seek advice from the Alcohol & Drug Information Service (phone 9361 8000 or 1800 422 599). The following tips may also be useful:

• Try low alcohol drinks
• Alternate non-alcoholic drinks with alcoholic ones