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Hepatitis C : 51 Frequently Asked Questions

This information aims to provide a wide range of detailed information about hepatitis C. For a brief overview, please see our brochure, Hepatitis C: a brief introduction.

Please note that the information below 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 counseling if needed.

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.

More than 210,000 people in Australia are estimated to have been exposed to HCV infection. Almost half, over 90,000 people, live in NSW. Around 16,000 new hepatitis C virus (HCV) infections are estimated to be occurring across the nation each year and, again, almost half of these are in NSW. Around 90% of these new infections occur through blood-to-blood contact between people sharing equipment used for injecting illicit drugs.

In the period, 1990 to 2001, there were over 192,000 notifications of HCV positive diagnoses – with over 76,000 notifications in NSW. Men comprise around 65% of the diagnoses, women 35%. Around 65% of people diagnosed are in the age range 20-39 years but an increasing number of people aged 15-19 are being diagnosed.

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 75% (three quarters) of people with chronic hepatitis C will not go on to develop cirrhosis (scarring of liver cells).

Over a 40 year period of infection, it is believed that less than 4% (one in 25) of people with chronic 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, virus levels in the blood rise dramatically until the body’s immune response starts producing antibodies. Although our antibodies fight the virus, in three out of four cases, the virus is not eliminated and these people are left with a chronic (long-term) infection.

Around 45% of 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.

After 10-15 years, the majority of people with hepatitis C will have developed different levels of liver damage that will result in hepatitis C symptoms. These could include tiredness, nausea or abdominal discomfort (in some cases, symptoms can be disabling even though there may be only minimal liver damage).

Over a 40 year period, chronic infection will result in cirrhosis of the liver for around 20% of people with chronic hepatitis C. Over this 40 year period, an additional 4% of people with chronic hepatitis C will have developed severe cirrhosis that has led to liver failure or liver cancer (liver failure may be treated by liver transplant although the new liver will be affected by residual HCV in the bloodstream).

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 “labeling” 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 8% and 25% 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.

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 pegylated and standard combination therapy (interferon & ribavirin), and pegylated interferon therapy for those people who can not tolerate ribavirin.

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

Less than 10% of babies born to mothers with HCV actually acquire the virus.

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. 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 PCR test information, below). 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.

It is recommended that babies born to HCV positive mothers are not antibody tested but are given PCR tests as this can avoid months of possible distress for the parents (see Antibody and PCR testing information, below).

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 needle sticks 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 breast milk taken from hepatitis C positive women. Transmission via breast milk has not been shown to occur. There are many advantages to breastfeeding for the mother and baby, and the choice to breast feed 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 – except in the case of livers. People who are on the liver transplant waiting list can use hepatitis C infected livers as long as the donated liver is in reasonable condition. Most people with hepatitis C do not have serious liver damage and are considered viable donors.

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 separate 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: pegylated interferon and ribavirin.

Current government subsidised treatment involves pegylated combination therapy. Conditions apply to both this treatment (see below).

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.

Antiviral drug therapies for treating hepatitis C

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

Interferon is a natural substance made by the body to help defend itself against infection. Synthetically manufactured interferon in large doses can help reduce the amount of hepatitis C virus in the body and slow down the disease process. Pegylated interferon has an altered molecular structure which ensures it remains circulating in the bloodstream for a much longer period of time compared to standard unpegylated interferon. Thus, pegylated combination therapy involves a once-weekly injection instead of three-times-a-week injections for standard interferon.

Ribavirin is a drug which helps to cut down the rate of hepatitis C virus (HCV) replication. With HCV, it has been shown to work best in combination with pegylated interferon rather than as a therapy on its own.

The Australian government offers subsidised anti-viral therapy to people fulfilling certain criteria.

While not a criteria for access to subsidised HCV S100 treatment, liver biopsy is the most accurate report on the condition of a person’s liver and is often recommended by specialists.

People wanting to access anti-viral drug therapy outside of the government subsidised scheme can purchase anti-viral therapy at full price or may be able to access them through industry-sponsored compassionate-use schemes (see Alternative access to treatment).

Peg combo therapy

The currently preferred therapy for hepatitis C involves a combination of once-weekly injections of pegylated interferon and twice-daily ribavirin tablets marketed under the names “Pegatron” and “Pegasys RBV”. The cure rate for pegylated combination therapy is related to a person’s hepatitis C genotype.

People with HCV genotype 1 or 4 are given 48 weeks of therapy and have a 50% (approx) chance of cure.

People with HCV genotypes 2 or 3 are generally given 24 weeks of therapy and have an 80% (approx) chance of cure.

In hepatitis C terms, the word “cure” is defined as clearing the hepatitis C virus from the body. GPs and specialists often refer to this as a sustained viral response (SVR)

To define whether a person has cleared the virus, PCR blood tests are done at the end of therapy and then repeated six month later. If both tests return a negative result, the person is deemed to have cleared their hepatitis C infection and..

is no longer infectious (has no risk of transmitting the virus)

is not likely to experience further liver damage

is likely to see an improvement in liver condition, and

is likely to experience a reduction in symptoms.

Even where people may successfully clear the virus, their past chronic hepatitis C infection may have caused liver damage (eg. cirrhosis) which will remain. Some of these people will have a gradual reversal of liver damage and symptoms associated with hepatitis C may improve. People with cirrhosis should seek specialist advice about medical follow-up and managing their liver damage. If cirrhosis is present, there is still a small ongoing risk of liver cancer.

Subsidised therapy is available to people who satisfy a range of conditions (called S100 criteria). The criteria change from time to time and are becoming more relaxed. Additionally, there has been an increase in the number of clinics offering treatment. It is advisable to check for the most up-to-date listing of criteria and treatment centres by phoning the Hep C Helpline.

After successful anti-viral therapy, people do not have immunity and can get reinfected with hepatitis C, so it is important to avoid blood-to-blood contact with other people. Additionally, people who have cleared HCV will continue to manufacture antibodies and will continue to return positive results to the HCV antibody test. This does not mean you still have the virus, it simply shows that you had a recent past infection. To confirm HCV infection or clearance of the virus, a PCR test needs to be performed rather than an antibody test.

Anti-viral therapy side effects

Most people undergoing therapy experience some level of side effects. The most common side effects are flu-like symptoms such as chills, fever, malaise, muscle pain, and loss of appetite. Other common side effects include depression, sleep disturbance, tingling or crawling of the skin, impaired concentration and cognitive dysfunction such as memory loss, apathy, and a slowing down of mental processes.

The most common side effect of ribavirin is anaemia. People’s blood counts are monitored closely, especially in the first few weeks. The ribavirin dose may be lowered if necessary.

Nearly everyone experiences some level of side effects at first although for most people, side effects do settle down and lessen. In many cases, they can be managed by adjusting dosing or prescription of additional medication. Very few people have to stop taking therapy early because of side effects.

It is important to note that management of some side effects has improved significantly over the last couple of years. Over 90% of people now complete their therapy.

Improved management of side effects has allowed therapy to become available to people who may have been previously excluded. It is important to speak to your treating doctor or nurse about any side effects when they occur, as they will most likely be able to help you manage them better or help reduce them.

More information on side effects can be found in the factsheet, ‘Side effects of antiviral drug therapy’.

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.

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 compassionate-use schemes. For more information, people should contact their nearest treatment centre.

Assessing/monitoring therapy

Because of possible side effects, close monitoring is required. This includes regular return visits to the treatment centre or to a doctor for blood tests and general assessment. PCR testing is an important part of treatment monitoring and involves blood tests that look for the actual virus. These tests play a major role in regard to clinical assessment for therapy and ongoing monitoring of therapy.

PCR viral detection tests. These tests are sometimes called “qualitative testing” and simply show if the hepatitis C virus is present in the blood. They are used during therapy to help monitor whether interferon therapy is working well or not.

PCR genotype testing. These tests are used before therapy to determine what “type” of hepatitis C virus a person has. A person’s HCV genotype helps determine their chance of being cured.

PCR viral load tests. These tests are sometimes called “quantitative testing” and measure the amount of hepatitis C virus circulating in someone’s blood. They are used for monitoring response to therapy. PCR viral load tests can also help in determining the likelihood of response to therapy, particularly in regard to people with genotype 1.

After therapy

Following successful therapy, it is important that people avoid further infection risk and have follow up visits at six months and one year with their GP.

People who do not respond to therapy or relapse after therapy (those who do not clear the virus and are not cured) should maintain regular follow up visits with their GP. Further developments in hepatitis C therapies occur over time, especially in regard to experimental trials of new drugs and combinations of drugs.

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 significant reduction in viral load after 12 weeks of treatment.

End of treatment response

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

Sustained response

A sustained response is where no presence of the virus can be detected immediately after therapy, and for six months afterwards. Recent research shows that 99% of these people maintain their viral clearance for at least fours years and it is believed their response will last indefinitely.

It is also becoming clear that the majority of people who experience a sustained response will enjoy a reversal of their underlying liver damage, even from the stage of cirrhosis.

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 Generally speaking, people who have hepatitis C would benefit from cutting out alcohol use altogether, or reducing it in line with the specific guidelines that have been developed by the Commonwealth Department of Health and Ageing (for people with health conditions including hepatitis C): guideline 4.

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 Avoid places where there may be pressure to drink heavily Avoid drinking in rounds by purchasing own drinks To keep track of how many have been consumed, finish each drink before the next.

Heavy drinkers When we use this term we are referring to people who regularly drink more than five standard drinks in a day, and who regularly have less than two alcohol-free days per week.

Standard drink This is the equivalent of one middy of full strength beer, one standard glass of wine or one nip of spirits. For further information, see the Commonwealth Department of Health and Ageing’s standard drink guide.

Prescribed medications Some prescribed and over-the-counter medications can be harmful to the liver if taken in high doses or for too long. It is therefore important for people to consult a GP or pharmacist about their current or any proposed medications, and follow the directions. People with serious liver disease (ie. cirrhosis) should consult a specialist about all medications.

Hepatitis C and diet

It is common for people with hepatitis C to worry about what they eat and whether their diet affects their liver. Generally speaking, there are no particular foods that people need to avoid or seek out, aside from avoiding certain herbs and plants that can cause liver damage.

This pamphlet provides a brief introduction to healthy eating for people with hepatitis C who do not have serious liver damage. It is meant to complement more detailed information resources which are listed in “ Further nutritional information. ” If you are unsure about whether you need specialised dietary advice, please speak to your doctor.

The role of the liver The liver is one of the most important organs of your body. It is the factory that converts raw materials from your digestive system into substances that your body needs. It detoxifies harmful substances such as alcohol and helps remove waste products. The liver also makes bile which helps in the digestion and absorption of fats.

What HCV does to your liver The hepatitis C virus (HCV) often causes damage to people’s livers, although many with hepatitis C remain quite well. Even if someone’s liver is not significantly damaged they may still feel tired or ill. This may be due to the way the human body fights HCV.

Healthy eating & lifestyle Healthy eating is important as you generally feel better when you eat well. Healthy eating involves choosing a variety of foods. In the right balance, these foods will meet your body’s need for energy, growth and repair. To get a good daily intake of vitamins and minerals you need to eat some food from all the food groups every day, varying your choices from day to day.

Exercise may also make you feel better and improve your appetite. You don’t have to take it seriously, only regularly. Over consuming alcohol or other drugs can disrupt your day-to-day eating patterns and this may have a negative impact on your health.

Hepatitis C and body weight Evidence is mounting that excess body fat contributes to liver disease (as well as cardiovascular disease). People with HCV are advised to avoid becoming overweight.

The best way to manage your weight is a long term approach of increasing the exercise you do along with maintaining a lower-fat high-fibre diet. Avoid rapid weight loss as this can be damaging to the liver. Contact a dietitian to discuss the best strategy for you.

Alcohol & HCV The risk of developing cirrhosis is higher for people with HCV if they also are heavy drinkers (for more information, contact the NSW Hep C Helpline or speak to your doctor). A reduction in alcohol intake should be the first step in any attempt to reduce the possible risk of serious liver damage.

Fats & HCV You don’t need to cut out all fats and oils just because you have hepatitis C – everybody needs some fats to make hormones and for body cells to function properly. But many people in Australia eat too much fat which is a risk factor for heart disease, diabetes and becoming overweight. People are generally advised to eat less fat.

If you feel sick or nauseous (ie. feel like vomiting) and find that fatty food doesn’t agree with you, try avoiding such foods while you feel nauseous. Reintroduce individual foods gradually to see which ones cause the problem.

Dairy foods Dairy foods are an excellent source of essential nutrients. It is hard to get enough calcium if you exclude milk products from your diet. Some dairy foods contain high levels of fat and if you want to reduce your fat intake, choose reduced-fat dairy products or calcium-enriched soy milk products.

Red meat Lean red meat is a valuable source of iron, protein and B group vitamins. There is no published scientific evidence to suggest that people with hepatitis C are adversely affected by eating red meat.

Sugar We are born with a strong liking for sweet tasting foods. Although sugar is a source of energy (calories, kilojoules), it is better to obtain your energy from nutrient rich foods such as wholegrain breads and cereals, meats, fruits, nuts, fish, tofu or vegetables.

Sugar enhances the flavour of many foods and it is often found as an additive. Such foods consumed in moderation should not pose a health problem. There is no published scientific evidence to suggest that people with hepatitis C have particular problems metabolising (processing) sugar.

Tea and coffee Tea and coffee have been enjoyed in many cultures for thousands of years. The active ingredient, caffeine, produces effects on the body (such as increased alertness) but these are usually temporary. There is no published scientific evidence suggesting that tea, coffee or caffeine-containing drinks, consumed in moderation, cause particular problems for people with HCV.

Salt All people in Australia are advised to eat less salt whether they have hepatitis C or not. You can do this by using less salt in cooking and reducing salt use at the table. Many manufactured or processed foods such as canned vegetables or sauces are high in salt. Try using low-salt or salt-reduced varieties of these foods.

Food colours and preservatives There is no published scientific evidence to suggest that people with hepatitis C have particular problems metabolising artificial colours or preservatives in foods. Avoiding all artificial colours, flavours and preservatives would severely limit your shopping choices and could add unnecessary stress to your life without any significant health benefits.

Any people with proven sensitivity to particular colours, preservatives or foods should be vigilant, whether they have hepatitis C or not.

Vitamin & mineral supplements There is evidence that antioxidant nutrients (such as vitamin C and E) can play a role in limiting the damage that HCV causes to the liver. Most people get their vitamins and minerals from fruit and vegetables. Additional supplements may be useful for people who do not eat a variety of foods from each food group. People with illness or injury have increased vitamin and mineral requirements and may benefit from taking supplements.

If you take supplements, be careful not to exceed the recommended dose as this may be harmful. Seek advice about whether you need nutritional supplements from an Accredited Practicing Dietitian (see DAA, Further Information ).

Herbal treatments Some herbal treatments have been shown as beneficial to the liver (eg. silymarin). Other herbs can damage the liver (eg. germander, Teucrium chamaedrys ) and some can interfere with prescribed medications (see Further Information ).

Complementary health practitioners can advise on possible herbal treatment options. For further information and referrals, please contact the NSW Hep C Helpline . It is recommended that you discuss all treatments you are considering with your medical practitioner.

Nausea & loss of appetite Here are some tips to help when you feel nauseous or have lost your appetite:

Eat small amounts, often Eat most when you feel hungry Try ginger ale or other ginger products Choose foods that contain lots of vitamins and minerals. You can meet your requirements in a smaller amount of food by eating foods like milkshakes or smoothies, yoghurt, nuts, tofu, dried fruit, soy drinks, flavoured milk or cheese. Try different tastes to stimulate your appetite, eg. bitter, sour, salty, sweet. Special nutritional supplements may be useful if you are not eating well or if you are losing too much weight. Talk to a dietitian if nausea and loss of appetite persist. Dietitians can also provide advice on nutritional supplements.

Further nutritional information Most people with hepatitis C will not experience serious liver damage. They need only take care about their food choices and alcohol intake to ensure their diet keeps them as healthy as possible.

If you have a level of liver damage or symptoms that require more specialised dietary advice, your GP or specialist should be able to refer you to a dietitian.

For more detailed information on hepatitis C and diet, see ASC Nutrition & Hep C

For dietary advice, contact the Dietitians Association of Australia: www.daa.asn.au (02 6292 9555).

Also read, The Guide to Healthy Eating for People with Hepatitis C , AHC (2001).

For information about helpful and harmful herbs, see Info on Herbs.

Injecting drug use and hepatitis C

In Australia, past or present injecting drug use is the most common risk factor for HCV. The majority of people who have injected drugs have hepatitis C. Those people who inject and don’t have hepatitis C are at great risk of infection.

Anyone who has ever shared injecting equipment may have possibly caught hepatitis C. It doesn’t matter what was injected – heroin, methadone, pills, speed or steroids. It is the possible blood-to-blood contact during injecting that is a potential risk for transmitting infection.

People who inject drugs will benefit from a good medical follow-up after a hepatitis C diagnosis is made. Knowing about hepatitis C status is important in helping to maintain good health through recommended lifestyle changes (see Self-management).

For those people who already have hepatitis C, it’s important to inject as safely as possible to avoid passing the virus on to others or becoming reinfected with a different HCV genotype or subtype. It is believed that reinfection may cause increased illness or place a greater strain on the liver.

Those people who previously contracted HCV but cleared it naturally would not be so lucky a second time around and would most likely develop a chronic infection.

Methadone and hepatitis C People on a methadone program may be able to access hepatitis C antibody testing and ongoing liver function test monitoring through their prescribing clinic. If the clinic does not offer such services, a person can ask for a referral to a GP who does.

The effects of methadone can alleviate painful symptoms of hepatitis C. Relief of pain can be helpful, but it may also camouflage early signs of liver damage (if it develops). Flu-like hepatitis C symptoms may give the impression that someone is using prescription pills or going through withdrawal. If this causes problems with staff at the clinic, it may be useful if they’re reminded of the complicating effect of hepatitis C symptoms. People should be careful with methadone dosages and aware of their tolerance for drugs. This is especially important if liver damage is severe. People who inject drugs can obtain information on HCV and injecting drug use from the NSW Users & AIDS Association (NUAA) or the NSW Hep C Helpline .

Harm reduction There are a number of health risks associated with injecting drug use. These include the variability of the strength of street drugs, differences in people’s capacity to tolerate drugs, the potential for street drugs to contain impurities and the possibility of infection or reinfection with hepatitis C and other bloodborne infections. People who inject drugs should consider the following:

Swallow, snort or smoke the drugs (but don’t share the straws if snorting) Wash hands before and after shooting up, preferably using soapy water Wipe down all surfaces where hit is being prepared Avoid all contact with anyone else’s blood, including traces not able to be seen Use a new fit for every hit (as a last resort, use fits cleaned as described below) Don’t share any equipment when preparing and injecting drugs – use personal gear Don’t inject hits prepared by other people at some other time Immediately after use, flush fits with clean cold water even if it’s not thought they’ll be used again. This helps remove blood from the fit and has the added advantage of removing traces of whatever drug has been used Dispose of fits safely – eg. put them in sharps bins, back in fit packs or as a last resort, put into empty plastic resealable drink bottles Avoid binge drug use and heavy alcohol use when using.

Cleaning fits If people have to reuse fits, disinfecting or cleaning them will reduce the chances of HCV and HIV transmissions, septicaemia and other infections. People should play it safe and use all new equipment every time they hit up. Reusing fits should be a last option only. If anyone has to reuse fits, they should remember the following guidelines:

After previous use: wash your hands then rinse fit with cold tap water. Repeat this until all signs of blood are gone. Squirt water down sink or safe fluid disposal area (eg. empty plastic drink bottle). Do this as soon as a fit is used as dried or clotted blood is hard to wash out and can block the fit. Always use cold water as hot water will clot blood in the fit and block it. Before current use: wash hands and prepare three containers: one filled with clean cold tap water for rinsing the fit; one filled with full strength bleach for soaking/bleaching the fit; and one filled with clean cold tap water for flushing bleach from the fit. Rinsing: Draw clean cold tap water from the first container into the fit. Squirt the water out into your sink or safe fluid disposal area. Repeat until you cannot see any traces of blood. Bleaching: Use full strength bleach (at least 5.25% sodium hypochlorite), having checked the use-by date. Take the fit apart and cover it completely with bleach, soaking it for at least two minutes. If you can’t soak it, draw bleach into the fit and shake for at least 30 seconds. (Count “one thousand, two thousand” … up to “thirty thousand”.) Squirt the bleach out into your sink or safe fluid disposal area. Repeat this process at least once again. Flushing: Draw up fresh water from the third container into the fit. Don’t use water from the first container as this has been contaminated. Squirt the water into your sink or safe fluid disposal area. Repeat this flushing process at least six times, until all the bleach has been removed.

Taking time with the above steps improves the chances of avoiding transmission of hepatitis C, but ideally use a new fit for every hit.

Hepatitis C and women

Hepatitis C can affect women differently from men – possibly due to effects on female hormonal balances. Women with hepatitis C who are considering hormone treatment or related medications should discuss any possible complications with their doctor. There is no evidence that HCV adversely affects a pregnant woman or her unborn child – but there is a low risk of transmission from mother to baby depending on the mother’s PCR status.

Hormonal effects Hepatitis C can involve menstrual irregularities, particularly if a woman is experiencing significant hepatitis C symptoms. This may be because the liver plays a role in regulating hormones in the body.

Birth control If women are experiencing significant hepatitis C symptoms, using the oestrogen-based contraceptive pill may be inadvisable. In these cases, the progesterone-only pill or Depo-Provera may be preferable. In any case, women should consult a gynaecologist or other women’s health specialist.

Hormone Replacement Therapy If women have severe hepatitis C symptoms they may need to discuss with their doctor or specialist whether hormones should be used for menopausal symptoms. In some cases, doctors may recommend external vaginal creams and skin patches rather than pills.

Issues for partners, families and friends

Except for blood-to-blood contact, the virus is quite difficult to pass on. Within normal daily contact, family members, friends and work colleagues are not at risk of contracting HCV (see Household transmission).

Partners, families and friends can play an important role providing emotional and practical support for people with hepatitis C.

Most babies are not at risk of catching hepatitis C, and sexual transmission of hepatitis C is very uncommon.

If parents feel it is necessary to test their babies and toddlers, it is important to discuss with their GP the tests involved. A PCR viral detection 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 at least 18 months of age (see Mother to baby transmission).

At some point in time, people who have hepatitis C may decide to tell their current sexual partner/s. It may be useful to have hepatitis C booklets or brochures on hand. For more information on disclosing HCV status to others, or to obtain written resources, people can phone the NSW Hep C Helpline.

How does hepatitis C affect children?

It is not believed that hepatitis C physically affects children any differently from adults.

Although many studies have examined hepatitis C’s affect on adults, particularly people who have had blood transfusions, there have been few studies done on infants and children. Emerging research suggests hepatitis C infection has a lesser impact when contracted by children. For more specific information, contact the NSW Hep C Helpline.

Telling others

Coping with an illness like hepatitis C can be easier when friends, family and others know what’s happening – but people with hepatitis C should be careful about telling others as they may react with prejudice.

Some health care workers – such as GPs or surgeons – may need to know about a person’s hepatitis C so they can give the best treatment for injuries or other illnesses (eg. providing medicines that may be less harmful for the liver).

Most people with hepatitis C are not obliged to inform anyone of their HCV status. HCV positive health care workers who perform ‘exposure prone procedures’ should be guided by their State or Territory health department’s guidelines and by the policy of their professional body and relevant Board (see Health care workers in NSW).

People who are unsure of who to tell, or how to tell them, should contact the NSW Hep C Helpline or a counsellor.

Hepatitis C is a notifiable condition for GPs, hospitals and blood pathology laboratories. They pass on basic information about an HCV positive test result to the health department. Such information is kept very brief and treated confidentially. It is used to provide statistics about hepatitis C.

Within workplaces and health care settings, government-endorsed standard blood and body fluid precautions are used to prevent transmission of viruses such as HCV. Because these precautions are based on the assumption that anyone could have HCV, precautions should be applied equally for everybody.

Most health care workers have non-judgmental attitudes and are aware how HCV is transmitted. People with HCV should consider whether health care workers that they see need to know about their HCV – from the point of view of providing best quality health care, rather than infection control considerations.

Health care workers who perform exposure prone procedures should be guided by their State or Territory health department policies. Hepatitis C positive health care workers in NSW who perform exposure-prone procedures should seek advice from a medical specialist in the management of HCV. Infected health care workers should also seek advice from their professional organisation and registration board regarding the implications for their career. NSW Health has established the Blood Borne Virus Advisory Panel from which advice can be sought anonymously by infected health care workers and their treating medical specialists. The NSW Hep C Helpline can provide contact details for the Blood Borne Virus Advisory Panel.

What can be done about discrimination?

How people might have caught the virus is not important. Those who have hepatitis C are covered by anti-discrimination laws and should be treated equally by other people.

Anti-discrimination legislation covers people with hepatitis C as viral infections such as HCV are classified as a disability.

It is important to remember that people with HCV should not be treated differently from anyone else. This applies to all of their everyday life – including buying or renting goods or services, obtaining health care services, applying for a job, getting a promotion at work or maintaining privacy where someone works or lives.

If something happens that seems to be against the law, people should first discuss it with the person or organisation that they feel is discriminating against them. People can usually access advice and help from work-related or legal organisations – eg. the workplace union, an Equal Employment Opportunity officer, a community legal centre or the Anti-Discrimination Board of NSW. The Anti-Discrimination Board has the legal power to investigate a complaint, and if it appears to be against the law, to try to reach a private settlement. Most complaints are settled successfully but those that are not go to the Equal Opportunity Tribunal. For general information on what to do, people can phone the NSW Hep C Helpline.

What can people do in regard to work?

Having hepatitis C should not have any great implications for people in the workplace. Risk of HCV transmission is so low that people with HCV are under no obligation to inform employers, work colleagues or customers that they have the virus. The one exception is for health care workers who carry out exposure prone procedures (see Telling others, and Health care workers in NSW).

Looking for work In pre-employment health checks, employers should ask questions relevant only to the advertised job. Types of work where someone might be precluded because they have hepatitis C are limited to those specialised health care workers who carry out exposure-prone procedures (operating with sharp instruments within body cavities). Unless a person with hepatitis C is applying for such work, employers have no valid legal reason to know about their infection. If someone is specifically asked when filling out a pre-employment medical questionnaire to tell about hepatitis C or such things as liver illnesses, they would probably need to decide whether to disclose or not on the basis of whether such information is relevant to the job, and whether possible discrimination may result from the disclosure.

Becoming sick at work Working people who develop illness are able to take sick leave and possibly long-service leave, but additional time off can cause problems. Employers do have a legal responsibility, though, to make reasonable modifications to the workplace to accommodate people’s disabilities. Amongst other options, employers may be able to:

Change a position from full-time to part-time Adopt flexitime arrangements Allow working from home where appropriate Reduce the amount of physical activity required within a job.

Workplace disclosure People who tell employers or work colleagues may unfairly lose their job or face some other form of discrimination as a result of ignorance or ill-feeling towards perceived injecting drug use. In such cases a person’s union and the Anti-Discrimination Board of NSW may be able to assist. The Anti-Discrimination Board can attempt to negotiate a return to work for sacked workers. If this is not possible or not appropriate, it can attempt to gain fair compensation on behalf of the unfairly sacked worker.

Health care workers in NSW In NSW, health care workers who perform exposure prone procedures (see glossary) are obliged to monitor their HCV status and abstain from performing exposure-prone procedures if they are HCV PCR positive. They are encouraged to inform employers of their HCV status, and should do so if it is likely that they have exposed patients to risk of infection by performing exposure prone procedures while infectious. For further information, see the NSW Health department circulars, 2003/39 and 99/88.

What about insurance & superannuation?

People with hepatitis C should not necessarily be refused life assurance or other insurance products but may expect to pay higher annual premiums. Superannuation providers can legally ask if someone has hepatitis C or whether they have injected drugs but they are not able to use that information to then treat the person less favourably than others.

Insurance Companies rely on skilful calculation of risk in order to carry out their business. Risk classification calculation, based on medical, statistical and actuarial information, is used for assessing clients with hepatitis C. Such classifications are similarly applied to several health risk behaviours – such as smoking. In this way, companies determine the correct amount of annual premium a person should pay in order to make an overall profit. Insurance companies need to show they have applied relevant risk classification calculations in an appropriate manner. People with hepatitis C may expect to pay increased premiums.

Superannuation It is against the law to discriminate against someone in the terms and conditions of superannuation coverage on the grounds of their sex, race, age, pregnancy, marital status, disability or sexuality – Anti-Discrimination Act 1977 (NSW). This applies toboth the employer in relation to their employee’s superannuation cover, and to the superannuation company that provides the cover.

It is not unlawful to ask if a person has hepatitis or other infectious diseases, or whether they inject recreational drugs. These questions can be asked verbally or in written form. It is unlawful, however, to then use the information received to treat a person with a disability (eg. hepatitis C infection) less favourably than someone else who doesn’t have such a disability. Some cases may not be covered by the Act. Service providers and employers can avoid acting in a discriminatory manner if they only ask questions that are directly relevant to assessing superannuation cover.

Superannuation providers routinely ask questions aimed at identifying applications from people who it is believed have a significant risk, within an initial three-year period, of death or excessive sick leave. In these cases, a special three-year payout exclusion clause may be applied. Questions contained within the medical history section of application forms should be aimed at such assessments for suitability of cover. Superannuation providers make such assessments based on a medical, statistical and actuarial basis. In this regard they must look at applications on a case-by-case basis.

It must also be noted that any information about a person applying for, or holding, superannuation cover must be kept confidential by the employer and superannuation provider. If anyone feels they have been treated unfairly in regard to superannuation, they should contact the Superannuation Complaints Tribunal or the Anti-Discrimination Board of NSW.

Centrelink & job seeking

People with hepatitis C who are seeking employment have no need to disclose their HCV status to staff at Centrelink or their local Job Network agency.

After many years, some people with hepatitis C may have a level of illness that interferes with their ability to work. Centrelink provides arange of financial support payments to assist these people, including Sickness Allowance, Newstart Allowance, Disability Support Pension, Carer’s Payment and Carer’s Allowance.

Sickness Allowance For people who are temporarily unable to work at least 8 hours per week due to illness or injury and are expected to soon return to work (or study/training).

Disability Support Pension For people who have a physical, intellectual or psychiatric disability and are unable to do full-time work.

Carer Pension For someone who provides a disabled person with ongoing frequent personal care, and does not receive any other pension or benefit.

Complaints / Appealing against a Departmental decision If people are unhappy with the way they have been treated by Centrelink, they can make a complaint. For more information, contact the Welfare Rights Centre – a community legal centre which assists people with Centrelink problems (see Legal assistance).

Where can people get advice or help?

Doctors should provide counselling when suggesting an HCV test and when later providing test results.

People who have received a positive test result or are considering having a test may also wish to contact the NSW Hep C Helpline , a free, confidential and non-judgmental service providing HCV information and support.

People seeking testing outside NSW can find the number of local hepatitis C helplines in their White Pages phone directory.

People can join the Hepatitis C Council of NSW , a community organisation which provides information, updates, support and other services.

Doctors can refer people to specialised counsellors for a range of issues related to hepatitis C. Sexual health and drug and alcohol counsellors may also be able to assist directly or provide referral to other relevant services.

NSW Area Health Services provide medical services as well as information, counselling and psychological services. For referral to services, speak to your doctor, contact your local community health centre, look in the front pages of your White Pages phone book.

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