HEPATITIS C

Chronic Hepatitis C infection (HCV) is estimated to affect 170 million people worldwide.

Hepatitis C is the fastest growing infectious disease in Australia with an estimated one in every 100 people having HCV. In 1997 it was estimated that more than 200,000 Australians were infected with the virus and that 11,000 new infections occurred each year (in 2002 this figure has increased to 16,000 new infections).

The majority of Hepatitis C notifications in Australian have been among young adults (20 – 39 years) with relatively few among children and the elderly.

The Natural History Hepatitis C

It is believed that HCV has existed for thousands of years.

Before a blood test for the Hepatitis C virus was developed in 1989, it became apparent that people receiving blood transfusions and blood products were contracting Hepatitis, despite the fact that blood and blood products were screened for Hepatitis B. The majority of these cases, known then as non-A non-B Hepatitis or post transfusion Hepatitis, have since been identified as Hepatitis C. In 1988, using genetic engineering, scientists discovered the virus responsible for causing the illness and called it the Hepatitis C virus.

Hepatitis C is structurally unrelated to the other Hepatitis viruses. There have been at least six major strains or genotypes of Hepatitis C identified and these genotypes are important indicators as to how effective an antiviral treatment may be.

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 in the majority of people. 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 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). These “families” are called 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, 2a or 2b etc.

Australian Genotype Patterns

• 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

Transmission

Hepatitis C is almost always transmitted through blood to blood contact. Currently there is no vaccination for Hepatitis C. It is also important to note that having Hepatitis C doesn’t protect people from being reinfected with a different strain of the virus.

The chance of Hepatitis C transmission depends on the risk factor. The most important route of spread is by injection with a sharp implement, especially a hollow needle that contains blood. The risk of infection also depends on the likelihood that the needle is contaminated with infected blood and the amount of blood.

Hepatitis C can be passed on by reusing syringes, needles and other injecting equipment such as tourniquets, spoons, water and surfaces and fingers contaminated with blood. Overall, 80% of Australian born people with the Hepatitis C virus will have contracted it through unsterile injection use.Recent research suggests that 91% of new HCV infections are due to exposure through injecting drug use.

As many people with Hepatitis C don’t realize they have the virus, it can be spread unknowingly. It is very important for people to use sterile equipment each and every time they inject. Sterile equipment includes needles and syringes, water mixing up drugs, vials that may contain the drug substance, tourniquets, cotton wool or tissues, and fingers, with or without gloves. It is also important for people to know that having Hepatitis C doesn’t protect them from being reinfected with a different strain of the virus.

There has been significant progress in preventing the transmission of Hepatitis C through the transfusion of blood and blood products. In the mid-1980’s, transmission was reduced by the introduction of interviewing procedures to determine risk factors in blood donors.

HCV transmission was further reduced in 1990 by the introduction of the first HCV blood screening tests (called anti-HCV “first generation” screening). Blood screening was further refined in 1991 by “second generation” anti-HCV testing and again in 2000 by nucleic acid testing.

The current risk of acquiring Hepatitis C from a blood transfusion is about 1 in a million.
Unsterile tattooing and other unsterile forms of skin penetration, such as body piercing, acupuncture, electrolysis and ear piercing are potential risk factors for Hepatitis C transmission. These practices most frequently occur in “backyard” settings and in prisons.

Professional tattooists and services offering body or ear piercing should be following infection control guidelines and be adhering to standard precautions to prevent transmission of HCV infection. Standard precautions refers to the single use of needles and other body piercing devices, the washing of hands and wearing of disposable gloves prior to any procedure and in the case of tattooing, the single use of dye solution.

The sharing or reusing of devices such as straws, used for snorting substances can also spread the Hepatitis C virus. These devices can damage the fine membranes inside the nose allowing the virus to enter the bloodstream. Again, single use of devices is recommended.

Skin penetration (usually needle stick) injury – is the most common way in which Hepatitis C can be passed on in the healthcare industry. The risk of developing Hepatitis C after a needle stick injury is less than 3% if the blood is from a person with Hepatitis C.

Accidental needle stick injuries are often the result of someone stepping on a needle. The risk of transmission here is very low.

Hepatitis C can also be spread by unsterile vaccinations and medical procedures, particularly in countries with a high rate of Hepatitis C. These countries include parts of Asia, the Middle East, Africa, South America and southern and eastern Europe. In some countries, this is the most common way that Hepatitis C has been spread.

In some countries, commercial barbering and folk medicine practices that involve blood sharing have been identified as ways of transmitting the HCV virus.

The risk of passing on Hepatitis C via sexual contact is considered to be extremely low, but may occur if there is blood to blood contact during sex (for example “rough sex” that could damage the lining of the vaginal wall or penis). Surveys of people with chronic Hepatitis C in many countries, including the USA, France, Taiwan and Australia, have consistently failed to find Hepatitis C infection among stable sexual partners. In fact, the evidence is sufficiently strong for authorities in the USA and Australia to state that the use of condoms is not essential between stable sexual partners.

There is, however evidence to suggest that people are at higher risk of passing on Hepatitis C during sex if they have a history of other sexually transmitted disease. This may be because of inflammation or ulceration of the genital area, which may allow the virus to pass through into the blood. Likewise, HCV is present in menstrual blood, and this is likely to increase the risk of transmission.

The rate of sexual transmission of Hepatitis C appears to also increase in individuals who are “co-infected” with the HIV virus.

Household transmission (via razors or toothbrushes) is thought to be extremely rare. Nevertheless, these items should not be shared as they may contain traces of blood. There is no risk of transmission via cups, plates or other eating utensils.

Mother to child transmission of Hepatitis C is thought to be around 6%. HCV transmission occurs only when HCV/RNA is detectable (by the PCR test) in maternal blood. The risk depends on the level of circulating virus (viral load). The risk of transmission is higher in HIV infected mothers.

It is important not to test infants for anti-HCV before 12-18 months of age, because the baby will have naturally acquired the mother’s antibodies. In cases where there great concern, a HCV PCR test can be done at 1-2 months to check Hepatitis C infectivity.

The information to date indicates that the outcome of neonatal infection is reasonably good, with some children clearing the virus spontaneously. When chronic HCV infection does occur in children, the infection appears to be mild with a very slow rate of fibrosis (scarring of the liver).

There have been no recorded cases of transmission via breast milk and breast-feeding should not be discouraged unless the nipples are cracked and/or bleeding. The levels of HCV virus in breast milk have been found to be very low.

Ways in which HCV cannot be spread

• Coughing or sneezing

• Through food or water

• Sharing eating utensils or drinking glasses, cups.

• Hugging or kissing

• Casual physical contact

• Breastfeeding (assuming no cracked nipples).

NB: Blood-sucking insects like mosquitoes, fleas and lice have been shown not to transmit Hepatitis C

Signs and Symptoms of Hepatitis C

• Hepatitis C affects different people in different ways.

• The vast majority of people with Hepatitis C report no symptoms when they first contact the virus (acute stage of infection).

• However around 10% will be acutely ill for several weeks or even months soon after being infected.

• Around 25% of people will clear the Hepatitis C virus naturally - usually within 2 to 6 months after becoming infected.

• The remaining 75% - 80% will develop a long-term (chronic) infection and could pass on the virus to others through blood to blood contact.

• Many people with a chronic infection will stay healthy for a long time. Some people actually never experience any noticeable symptoms or illness.

• Some people develop symptoms of liver disease after an average of 15 years including tiredness, lethargy, nausea, headaches, depression, aches and pains in joints and muscles and sometimes discomfort in the upper right abdominal area. It is good to keep in mind though, that may of these symptoms can be caused by other conditions.

• Up to 10% of people will develop cirrhosis (severe scarring) of the liver after about 20years. Of this group, around 5% will develop liver failure or liver cancer.

Phase 1 Infection	Phase 2 Inflammation	Phase 3 Fibrosis	Phase 4 Cirrhosis

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.

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.

A PCR test is used to detect or measure the actual Hepatitis C virus in a sample of blood.

Who should have the HCV test?

1. People who have had blood transfusion or blood products before February 1990

2. People who have ever injected drugs (including steroids)

3. People who have tattoos

4. People with body piercing

5. People who have ever had a needle stick injury

6. People with abnormal liver function tests

7. People experiencing Hepatitis C – like symptoms but have no apparent cause

8. Health care workers who perform exposure prone procedures

What is a PCR test?

The PCR (polymerase chain reaction) test can determine if someone has Hepatitis C virus or just has antibodies from a past infection. There are three types of PCR tests – viral detection, viral load and viral genotype. Each test provides different information about a person’s Hepatitis C infection.

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 antiviral treatments. These tests assist people to:

1. Determine whether they may have cleared the virus (but still have antibodies)

2. Determine their level of infectivity

3. Confirm inconclusive Hepatitis C antibody test results

4. Assess their response to HCV treatment

Note: Levels of virus can fluctuate in the blood and at times, the level of virus 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 have at least three HCV RNA tests performed at least 6 months apart. As of February 2003 the medicare rebate applies onlt if the test is repeated under 6 months.

PCR viral detection test

Also called the HCV “qualitative test”, the PCR viral detection test is mainly used as a confirmatory test when an antibody test result is inconclusive. PCR tests are done for a variety of reasons including checking if someone might have contracted HCV after a high risk incident; whether someone is infectious for Hepatitis C when they have consistently normal liver function tests; to determine the chance of transmission of HCV from mother to child; during and after treatment for Hepatitis C to determine response.

PCR viral load test

Sometimes called the HCV “quantitative test”, this PCR test measures the amount of HCV circulating in the blood. Measuring the level of virus before and during treatment can help in regard to determining response to Hepatitis C treatment.

PCR viral genotype test

PCR genotype tests can determine what HCV genotype and subtype a person has. This information is particularly useful in regard to treatment for Hepatitis C where it is known that certain genotypes respond better to drug treatment.

Liver function tests

Liver function tests are used to provide an indication as to the general condition of the liver. LFTs measure particular enzymes or proteins in the 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 the liver function tests.

A doctor can offer ongoing evaluation of someone’s medical condition by interpreting differences in their liver function test results over a period of time and whether or not they have physical symptoms or signs of liver disease.

Liver function tests do not provide conclusive evidence of what is happening in the liver and do not always correlate with how a person feels eg. Some people may feel quite ill, yet have mild liver damage.

It is important to remember that raised liver function tests results may be caused by medical conditions other than HCV.

In cases where the liver function 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 performed.

Liver Biopsy

A liver biopsy provides the “gold standard” or most accurate means of assessing the condition of someone’s liver. Using a special instrument, a specialist doctor takes a small sample of liver which is then examined under a microscopy. The actual biopsy takes about one second. People usually remain under observation for at an hour or two.

Ultrasound and other x-rays can indicate certain liver-related abnormalities, but cannot determine the degree of fibrosis in the liver or distinguish cirrhosis from other conditions such as fat accumulation.

The need for a liver biopsy is no longer a criteria for patients wishing to access government funded treatment.

The degree of scarring and presence or absence of cirrhosis is only part of the information available from a liver biopsy. The biopsy can also show if there are other factors interacting with the Hepatitis C to damage the liver. These factors include excess alcohol, iron accumulation in the liver or evidence of autoimmune disease (where the body’s own immune system attacks liver cells).

Is the liver 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.

How do doctors make sense of a liver 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 much fibrosis or scarring has the virus caused in the liver? Using the Scheuer or Metavir Score model, this can be estimated by studying three main parameters:

1. The amount of portal inflammation – this is the inflammation in the area near the portal tracts which carry the small bile ducts and portal veins.

2. The amount of lobular inflammation – this is the degree of inflammation in the cells between the portal vein and the hepatic vein.

3. The amount of fibrosis – this is the development of liver cell scarring.

These three features may be given scores of 0 – 4, where four represents severe scarring or cirrhosis. The first two parameters (portal and lobular inflammation) are often called the “grade” of liver damage whilst fibrosis is referred to as the “stage” of liver damage.

It is the stage of liver damage that gives us a clue as to the chances of progression to cirrhosis over the next 10 years or so.

Treatments for Hepatitis C

Antiviral therapy

Antiviral treatment is not always the most appropriate treatment for a person with Hepatitis C and there is usually no urgency in starting the therapy. The decision to commence treatment is made by the patient and doctor taking into account the clinical, personal and lifestyle issues of the patient.
In order to be considered for treatment people first need a referral from their GP to a liver specialist at an authorized treatment hospital or centre.

The Australian government will cover the cost of treatment under a special scheme called S100 as long as people meet certain criteria.

The decision to use specific antiviral therapy will depend on many factors including:

• The person's desire to have therapy

• The ability to meet certain criteria for treatment including the presence of significant liver disease on liver biopsy and abnormal liver function tests.

• The absence of significant contraindications to treatment

These treatment decisions will be made as part of a routine "work-up" which will also include a variety of blood tests and sometimes an abdominal x-ray and a liver biopsy. This may take several appointments and discussions with the medical staff.

It is vital that people are assessed thoroughly and that at the end of the day the patient can look at all the results with the doctor and make a clear decision as to what is best for them.

Combination therapy

Until a few years ago the first line of treatment of Hepatitis C was with Interferon injections given three times a week (monotherapy). Unfortunately monotherapy had only very limited success, particularily with the harder to treat strains of Hepatitis C (genotypes) such as genotype 1.

Combination therapy has been available in Australian for many years now and involves the use of an antiviral drug called Ribavirin in addition to Interferon.

The overall long-term response rate to Combination therapy (equivalent to clearance of infection) is around 60%. However, patients with certain types (genotypes) of Hepatitis C can have a greater than 70% chance of clearing the virus.

There are several important factors which determine who is more likely to respond to treatment. Some of these favourable factors include:

• Genotype – in Australia we mostly see genotypes 1, 2 and 3. Genotypes 2 and 3 respond better to antiviral treatment than genotype 1 (which is unfortunately the most common genotype).

• The amount of liver scarring (fibrosis)

• The age at which the infection was acquired

• Alcohol use

• The age at which someone is being treated

• Viral load – the amount of circulating virus in the blood

• Gender

At present the duration of treatment is either 6 or 12 months depending on the genotype and other factors such as the degree of fibrosis. At the commencement of treatment, people are shown how to give their own injections so that they are in control of their therapy. Then they are required to have blood tests at certain intervals and to come in to see the liver specialist at set times.

Side effects

People are very individual in how this treatment affects them. Most people experience some side effects but with support and monitoring can generally continue with a full course of treatment. A small number of people need to discontinue treatment because of unacceptable side effects and a small number of people experience only minimal symptoms.

Some common side effects of Combination therapy (Interferon and Ribavirin) include:

• Flu-like symptoms
• Tiredness or lethargy
• Headaches
• Muscular and joint aches and pains
• Loss of appetite
• Irritability
• Nausea

Many of these side effects can be managed during the course of treatment with changes in diet and lifestyle. Ongoing counselling and support is provided as part of the treatment process.

New treatments

Newer, longer-acting (pegylated) interferons are showing impressive response rates, particularily in people with genotype 1 and require only weekly dosing.

It is worth noting that there is a lot of active research these days into developing effective treatments for Hepatitis C. Vaccine research also is a major priority for Hepatitis C scientists but there are significant difficulties with this due to the evolution of the HCV virus.

Pegylated Interferon in combination with Ribavirin is now the treatment of choice and is available in Hepatitis C treatment clinics on the Gold Coast.

Pegylated Interferons are long acting interferons that are attached to large molecules (polyethylene glycol). The large molecules reduce the excretion of interferons and allow them to stay in the body for longer which reduces the ability of the Hepatitis C virus to multiply.

Another advantage with using Pegylated interferon is that it only needs to be injected once per week. Side effects also may be less severe because of the more consistent therapeutic dose of interferon, without the peaks and troughs of thrice weekly injections.

Pegylated Interferon in combination with Ribavirin is giving higher sustained response rates to treatment, particularly in genotype 1 where the SVR is increased from @ 30% for standard interferon with Ribavirin to @ 50% with the pegylated interferon. The SVR for genotypes 2 and 3 ranges from 60% to 80%.

Government funded treatment is offered to people 18 years or older who have chronic Hepatitis C and compensated liver disease; who have received no prior interferon therapy and who satisfy all of the following criteria:

• Have no other forms of chronic liver disease.
  
  
• Female patients of child bearing age who are not pregnant, not breast-feeding, and both patient and partner must be using an effective form of contraception (one for each partner). Male patients and their partners are using effective forms of contraception (one for each partner). Female partners of male patients are not pregnant.
  
  

The treatment course is for either 24 or 48 weeks, depending on Genotype and severity of liver disease. Treatment is ceased if HCV remains detectable in the bloodstream by an HCV/RNA qualitative or PCR test after 24 weeks of therapy.

What's available on the Gold Coast for HCV treatment

Currently there is a good variety and choice of liver clinics depending on where people live on the Gold Coast and what their particular needs are:

1. The Liver Clinic - Gold Coast Hospital - Specialist Outpatients Dept, 2nd Floor, Gold Coast Hospital, 108 Nerang St, Southport. Ph: 07 5571 8211.Weekly clinic on Fridays run by Dr George Ostapowicz - provides assessment of people with liver disease including Hepatitis C. Referral is required from a general practitioner or another liver specialist. Waiting list is around 12 months. Usually, a few visits are required to thoroughly assess someone for treatment for Hepatitis C. There is no charge to attend this clinic.

2. The Liver Clinic - ATODS Southside - 2019 Gold Coast Hwy, Miami. Ph: 07 5576 9020
Twice monthly private practice clinic on Thursdays run by Dr GeorgeOstapowicz - provides assessment of people with liver disease, including Hepatitis C. Referral is required from a GP or another liver specialist. Waiting list is currently about 8 months. All visits to the clinic are bulk billed. Would suit people who live around the central and southern parts of the Gold Coast.

3. The Liver Centre – Brockway House, 82 – 86 Queen St, Southport. In order to be assessed for treatment for Hepatitis C, a referral is required to see either Dr Lloyd Dorrington (Ph:07 5591 4455) or Dr David Robinson (07 5591 3155). Again, two or three visits may be required for a treatment workup for Hepatitis C. Medicare will cover most, but not all of the costs of doctor visits and initiation of HCV treatment.The one off clinic fee for treatment is a very minimal cost to the patient and the overall treatment is funded by Qld Health.  For more details of costs, contact the receptionist on either of the above phone nos. The Liver Centre is a private facility but funded by Qld Health. As such, it may suit people who are concerned with issues of privacy, convenience and expediency.

For more information on any of the above liver clinics, please contact Roz McLean, Hepatitis C Nurse Counsellor Ph: 0434 442 270

Complementary and alternative therapies

• Many people are keen to pursue different options to conventional or mainstream medicines. There are many different paths to take with complementary therapies and some trials have shown that some people seem to feel better and have improved liver functions using certain herbs or a combinations of herbs.

• Results from a recent double-blind placebo, controlled trial conducted by the John Hunter Hospital in Newcastle indicate a Chinese herbal preparation produced a 38% drop in ALT levels compared with an 8.5% drop in the placebo group. However no trial to date using alternative medicine has shown people to actually eradicate the Hepatitis C virus.

• Silybum marianum (milk thistle or St Mary's thistle) is another popular herb among people with liver disease. Limited research has shown the herb to have liver protective qualities and to be generally safe from adverse side effects.

• The John Hunter Hospital are in the process of conducting a trial using a combination of herbs with antioxidant properties including milk thistle to determine their antiviral and anti fibrotic (scarring) qualities in relation to Hepatitis C.

• Much more thorough research needs to be done in this area but until that happens, people need to be aware that some herbal preparations have been shown to be liver toxic and can actually do more harm than good. If you wish to pursue complementary medical treatments, it is a good idea to find a natural health practitioner who comes recommended and has had experience in the treatment of Hepatitis C.

It is not a good idea to "self-medicate" from the Health food store. People should also let their treating doctor know what "natural" medications they are taking, particularily any new ones so that the effects of these can be monitored with blood tests.

Diet , Alcohol and Tobacco

• A normal well balanced diet is recommended for people with Hepatitis C.

• Unless someone has symptoms of nausea there is no need to limit the fat content of the diet or to supplement the diet with minerals or vitamins unless nutrition is inadequate.

• A minority of people who do experience nausea may benefit from eating small amounts of foods that contain lots of vitamins and minerals as often as they can - rather than trying to eat big meals. Referral to a dietician may be of benefit particularly if nutritional supplements are needed.

• There is now good evidence to show that obesity can impact on the liver and Hepatitis C. A well balanced diet needs to balance the levels of physical activity in order to maintain optimal body weight. It may be beneficial for people with excess weight to obtain advice from a dietician.

• The consumption of alcohol puts extra stress on the liver and can cause increased fibrosis (scarring). In fact, having Hepatitis C and drinking alcohol greatly increases the risk of liver damage. Ideally it is better not to drink alcohol at all but if you choose to drink, consume small amounts of low alcohol beverages, have at least two alcohol free days per week and avoid binge drinking.

• Reducing or giving up alcohol can be difficult for some people and they may need profession help in order to achieve this goal.

• If cirrhosis or significant fibrosis is already present, complete abstinence from alcohol is mandatory.

• Alcohol has been shown to reduce the effectiveness of treatment for Hepatitis C. People are advised to cease alcohol for the duration of therapy.

• Tobacco consumption has recently been shown to result in increased liver scarring in patients with Hepatitis C.

Recommendations for alcohol intake based on stage of liver disease and duration of infection
Stage of fibrosis and duration of infection.	Stage 0-1 More than 20 years	Stage 0-1 10-20 years	Stage 2 More than 10 years	Stage 2 Less than 10 years	Stage 3-4 Any duration
Alcohol intake (upper limit)	1-2 standard drinks per day (women), and 2-3 standard drinks per day (men)	1-2 standard drinks per day	0-1 standard drinks per day	NO ALCOHOL	NO ALCOHOL
Stages of Fibrosis	0=No liver scarring; 1=Minimal scarring; 2=Moderate scarring; 3=Severe scarring; 4=Cirrhosis

Dr Greg Dore, Infectious Disease Physician at St Vincent’s Hospital, Sydney.

For information on healthy eating and Hepatitis C, contact your local Hepatitis C council for a copy of the "Guide to Healthy Eating for People with Hepatitis C" or try the website that was set up specifically to look at evidence based nutrition advice: www.sesahs.nsw.gov.au/albionstcentre/nutrition/hepc.asp

Psychosocial issues and Hepatitis C

Diagnosis and past issues

• Intravenous drug use is the most common route of HCV transmission. Questioning about transmission therefore requires a person to reveal whether they have ever used, or are currently using intravenous drugs. For people who have previously used but who are not current users, the diagnosis of Hepatitis C raises issues from their past. These issues then have to be dealt with as well as the new diagnosis.

• Quite often a person's family and friends are not aware of any previous drug use. In this case there can be many concerns around disclosure - eg. fear of lack of understanding and possible rejection; fear of a loss of trust and suspicion and the shame and stigma attached to the public perception that Hepatitis C is a "druggies"disease.

• For some people who have not previously used intravenous drugs but have acquired Hepatitis C through another mode of transmission (such as blood transfusion, tattoos etc), the diagnosis can carry the badge of being a "user" because of the association between HCV and intravenous drug use.

• After diagnosis, people can experience the full range of feelings associated with grief and loss - shock, disbelief, denial ,fear, anger, bargaining and so on to a point of acceptance.

Telling family and friends about a diagnosis of Hepatitis C can involve dealing with long-term secrets and carries the risk that relationships may change and friendships and support may be lost. Ideally, people need advice and counselling (particularily bereavement counselling) and practical advice on how to discuss these issues with family and friends and how to best prepare for possible negative responses.

A good place to start is to contact the Hepatitis C council in your state. One on one counselling services are also available through local hospital services and private organisations.

Diagnosis and present issues

• Although the risk of household transmission of Hepatitis C is very low, a person diagnosed with the virus may feel the need to inform members of a shared household about their HCV status. This disclosure involves uncertainty about the reaction of family and friends. Even though Hepatitis C can only be passed on through blood to blood, there is a lot of confusion about the different types of Hepatitis.

• If a person is not already in a sexual relationship, the idea of disclosing to a potential boyfriend or girlfriend can be a daunting experience, even though it is known that the virus is not generally transmitted sexually unless there is blood involved.

• Lack of information and inconsistent information around the time of diagnosis are significant concerns for people living with Hepatitis C. It is not uncommon for people to come away from the doctor's surgery with the idea that they may die in a few years or at best have cirrhosis within a relatively short time.

• Areas of potential discrimination for people with HCV include social security; medical and dental services; workplace settings including discrimination from employers and colleagues; Insurance companies and the general community. There remains an enormous amount of confusion as to whom people need to disclose their HCV status. Often it is not appropriate or even necessary to tell certain people that you have the virus.

Legal responsibilities

One of the legal implications of a positive Hepatitis C diagnosis is that people are unable to donate blood, blood products or body organs or tissues.
Even if a sustained viral response is achieved through HCV treatment with repeated negative testing for the HCV virus (HCV/RNA), these legal restrictions remain.

Again, people can contact their nearest Hepatitis C council for information and advice on how to deal with these issues. The councils also provide an excellent website and a range of printed resources on all aspects of Hepatitis C.

In summary

• The psychosocial aspects of living with Hepatitis C potentially involve far-reaching changes in self perception, relationships with others, especially family and friends, and uncertainty about dying young. Public perceptions of Hepatitis C, and social relationships between people infected with the virus and those around them have a major bearing on how well people adapt to the diagnosis.

• If the overall experience around this is negative, it will be difficult and sometimes impossible for people to move on in their lives. They can remain "stuck" in the diagnosis, feel powerless and often lose perspective on how much importance to place on having Hepatitis C. A positive experience on diagnosis can mean that people can become informed about the condition and their options, come to terms with having HCV, take control of the situation and get on with their lives.

• Uncertainty from a clinical point of view about what will happen in the future creates an ongoing anxiety for people living with Hepatitis C, especially when they are given conflicting information from different health professionals (unfortunately a common experience).

• Post-test counselling should occur as part of the diagnosis of HCV. This should go over the abovementioned issues in addition to inquiring about a person's support network and whether they may need additional support and counselling. Printed information should also be given at this time.

• Generally people do need good follow-up counselling as it is difficult to take in a lot of information after receiving a diagnosis such as this. Again, treatment options and lifestyle changes need to be discussed as well as the need for ongoing monitoring with blood tests. Referral to a liver clinic should be offered and reassurance that, managed properly, people with Hepatitis C can often live a normal healthy life span.

Acknowledgements:

1. Hepatitis C - the facts - produced in association with Australian Liver Association, Gastroenterological Society of Australia, Australian Hepatitis C council and the Royal College of Nursing

2. Hepatocare - information, direction and support for Hepatitis care professionals.

Local resources for people living with hepatitis C on the Gold Coast

HEPATITIS C COUNCIL OF QLD – Information Line: 07 3229 3767 or Regional Freecall: 1800 648 491. Admin: 07 3229 9238. E-mail:admin@hepatitisc.asn.au. Web Site: www.hepatitisc.asn.au.
The council is an excellent resource for people with hepatitis C. They provide information, support and counselling and for a small yearly subscription, will provide a monthly newsletter called the C Factor plus a variety of printed resources.

THE LIVER CENTRE – Suite 3 Brockway House, 82 – 86 Queen St, Southport. Ph: 5591 4455 or 55913155.
Email: info@thelivercentre.com.au. Web Site: www.thelivercentre.com.au
Provide printed information on a range of liver diseases including hepatitis C. Also provide treatment for hepatitis C (see section on HCV treatment).
A hepatitis C nurse/counsellor is available to speak to at the centre on Mondays.

HCV TREATMENT SUPPORT GROUP – Provides information and support for people living with HCV on the Gold Coast. First Tuesday of each month, 10.00 am to 12.00midday at ATODS Southside Clinic. 2019 Gold Coast Highway Miami.             

Ph: Sue Sharman 0414358127 for more details.

ATODS (alcohol, tobacco and other drug service) – Southside Clinic -2019 Gold Coast, Hwy, Miami. Ph: 5576 9020 Web Site: www.health.qld.gov.au/atods
Opioid Treatment clinic – free, confidential service- incorporates assessment and referral; counselling and support; opioid replacement therapy; community information. Referral is available for clients on the Methadone programme. A liver clinic also operates from Miami to provide information, assessment and treatment for people with liver disease (see section on HCV treatment).

ATODS – Northside Clinic – Gold Coast Hospital, 108 Nerang St, Southport.

Ph: 07 5571 8777. Web Site: www.health.qld.gov.au/atods
Provides a free and confidential service for people undergoing problems with drug and alcohol use; The service includes assessment and referral; counselling and support including relapse prevention groups; parent/family education and support; community information, training and projects; needle & syringe programme.

GOLD COAST SEXUAL HEALTH SERVICES – Miami Central Health building, 2019
Gold Coast Hwy, Miami. Ph: 07 5576 9033. Web Site: www.acshp.org.au/Miami.
Provides a free and confidential service which includes blood testing and treatment for STI’s (sexually transmitted infections); Information and treatment on all aspects of sexual health; HIV management; liaison and referral to other agencies; needle and syringe programme; education on safe sex practices; community education.

YES HOUSE – Youth Health & Education Service Inc – 12 High St, Southport. Ph:
5531 1577. For young people (12-25years) -provides a medical service; support and counselling; educational groups and workshops; advocacy, information and referral.

GOLD COAST YOUTH SERVICE – 15 Oak Ave, Miami. Ph: 5572 0400 – For young people (12 – 25 years) - provides assistance with accommodation; referrals and advocacy; counselling and support; workshops and programmes; information and advice.

CROSSROADS RECOVERY ASSOCIATION INC – 8 High St, Southport. Ph: 07 5531 4161. Provides a drug and alcohol counselling service to young people and their families; information and discussion evenings. This is a self funded service. Donations welcome.

Other interesting Web sites for Hepatitis C

Australian

1. www.hepatitisc.asn.au – Hepatitis C council of Queensland. Information on all aspects of hepatitis C
2. www.hepatitisaustralia.com – Australian hepatitis C council
3. www.hepatitisc.org.au – Hepatitis C council of NSW
4. www.hepcvic.org.au – Hepatitis C council of Victoria
5. www.hepccwahighway1.com.au – Hepatitis C council of Western Australia
6. www.hepccouncilsa.asn.au – Hepatitis C council of South Australia
7. www.gesa.org.au – Gastroenterogical Society of Australia (GESA)
8. www.ancahrd.org.au – Australian National Council on AIDS, Hepatitis C and Related Diseases

International

1. www.hepfi.org – Hepatitis Foundation International –seeks to increase awareness of the worldwide problem of viral hepatitis and to educate the public and health care providers about its prevention, diagnosis and treatment.
2. www.hepnet.com/index.html - Canadian site relevant to consumers and professionals
3. www.hopkins-hepc.org - an excellent site from the John Hopkins hospital in USA.

Other contacts

1. www.adin.com.au – Alcohol and Drug Information Network (ADIN) - useful website with links to many services
2. Alcohol and Drug Information Services (ADIS) – in QLD – Ph: 07 3236 2414 or 1800 177 833
3. www.ashm.org.au – Australian Society for HIV medicine (ASHM)
4. www.adcq.qld.gov.au – QLD anti-Discrimination Commission

www.health.qld.gov.au
Hepatitis Brochures