Friendly Print preview
Hepatitis C Handbook
By Hepatitis C
Council of Victoria Inc, Australia
(03) 9639 3200
What is hepatitis?
Hepatitis is a general term used to describe inflammation of the liver. Alcohol, chemicals and some drugs can cause hepatitis. It can also be caused by viral infection, such as hepatitis A, B, C, D, E, F and G.
These viruses may produce similar symptoms, but are transmitted differently, so their prevention and control differ, and one cannot lead to another because they are all completely different viruses. Medically they are regarded as different diseases. This booklet is concerned with hepatitis C. The hepatitis C virus is often abbreviated to HCV.
The liver is a vital to our body's good health. It has a number of functions which include: manufacturing and storing bile (which is used to break down fats in our digestion system), storing sugar and controlling the amount of sugar in our blood; manufacturing protein and other substances; and removing toxins, drugs and hormones etc. from our blood stream. If enough liver cells are not functioning well, a number of important body systems will eventually suffer.
What is a virus?
A vast group of minute structures, composed of a sheath of protein encasing a core of nucleic acids which are the building blocks of RNA and DNA. They are capable of infecting almost all members of the animal and plant kingdoms, including bacteria. Viruses are characterised by a total dependence on living host cells for reproduction and lack independent metabolism. Most viruses only infect one species. HCV only infects humans.
Where did hepatitis C come from?
Infection with hepatitis C virus used to be called 'non-A non-B hepatitis'. Doctors first noticed it when some people who have been give blood in hospital developed hepatitis.
Using tests for hepatitis A and hepatitis B, doctors proved these two viruses weren't causing the symptoms. For years, the doctors could only guess what was causing non-A and non-B hepatitis. In 1988, using genetic engineering, scientists discovered the virus responsible for causing the 'non-A non-B' hepatitis and called it hepatitis C virus (HCV).
What is hepatitis C? is an RNA virus that causes at least 95% of cases of acute and chronic hepatitis previously classified as non-A, non-B.
When someone catches the hepatitis C virus, their body produces antibodies to try to destroy it. More often than not, the antibodies fail to clear the hepatitis C virus properly. The infection then remains long-term. Most infected people don't know that they have the virus. This is because for some people there will be no symptoms and for others, symptoms take an average of 13 years to develop. Some people may have hepatitis C for 20 years or more before finding out.
Hepatitis C may damage the liver. The damage may be slight or serious. If people have symptoms, they might feel tiredness, abdominal discomfort and nausea. There is no way to predict what will happen for any one person. Some things can worsen symptoms, alcohol being the most damaging.
As world-wide research continues, we now know that the virus can mutate or change rapidly and there are several major sub-strains called genotypes. Each sub-strain varies. This could explain why our antibody response does not eliminate the virus. By the time our antibodies are ready to attack the virus, it has changed and our antibodies have no effect on it.
How many people have hepatitis C?
In Australia it is believed that between 150,000 and 200,000 Australians have hepatitis C.
In Australia, the prevalence of people with the virus is estimated at between 0.5% and 1%. This means that on average, up to one in every 100 people would carry the virus.
How does hepatitis C affect people?
The effects of Hepatitis C vary from person to person. Some are not affected by the condition, but others are affected very badly. As time goes on, we are learning more about hepatitis C. See the figure on next page as you read the following.It currently seems that if 100 people catch hepatitis C:
Hepatitis C infection involves an initial acute phase of infection which is usually not noticed and lasts two to six months. During this phase, levels of the virus in the blood rise dramatically until the body's immune response starts producing antibodies. Although our antibodies fight the virus, in 80 to 85% of cases the virus is not eliminated and following the acute phase of infection, people are left with a long-term chronic infection.
Some people with chronic infection don't have any noticeable liver damage or symptoms. These people remain well, but their blood is infectious and they should take care to reduce any risk of transmitting the virus to others.
A majority of infected people will eventually develop liver damage. Symptoms can vary widely, there are the symptoms which go with chronic infection, which may occur from day one, and there are the long-term symptoms which come from having liver disease i.e. cirrhosis. Doctors and specialists do not yet fully understand the cause of some symptoms eg. fatigue associated with chronic hepatitis C.
These typically include tiredness, nausea or abdominal discomfort. Sometimes symptoms may be disproportionately disabling compared to the amount of liver damage. Over a 20 year period, chronic infection may result in permanent scarring of the liver called cirrhosis. This is not life-threatening in itself but a further 5 to 10 years, extensive cirrhosis may result in liver failure or cancer of the liver. Liver failure may be treated by liver transplant.
How is the hepatitis C virus passed on?
Transmission is possible through blood to blood contact:
Sharing of injecting drug equipment is now the most common way of becoming infected. All injecting equipment is considered at risk - syringes, spoons, filters, water, tourniquet and swabs. Stopping bleeding with fingers also involves transmission risks if there is a small amount of blood present, sometimes not even visible. Although it is safer to inject in the company of other people due to the risk of drug overdose (approximately 500 people die from overdose per year in Australia), 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 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.
Unsafe tattooing and body piercing: Tattooing and body piercing are not always carried out under sterile conditions. Although single-use needles are commonly used, dye and dye tubs may be used for many customers. You should make sure that your tattooist or body piercer adopts infection control practices, ie. uses single use disposable surgical gloves, needles and dye tubs etc.
Blood banks began testing for hepatitis C virus as soon as tests become available in 1990. Before that, all blood transfusions and blood products carried some risk, with about 20% of people with hepatitis C having caught it through contaminated blood or blood products. Blood banks now test all donated blood and inform donors who have hepatitis C antibodies. Risk of hepatitis C transmission is extremely low.
Mother to baby transmission
If a baby is born to a hepatitis C positive mother and its blood was tested at birth for hepatitis C antibodies, the test would come back positive. This is because the baby has some of its mother's antibodies - these antibodies clear naturally over time. An antibody test at 12 months is usually negative as the toddler has lost its maternal antibodies. If the test is positive then it could be that the child has been exposed to the virus and a test for presence of the virus can be performed. About 6% of babies actually acquire the virus from a mother with hepatitis C. Mothers in the acute phase of infection, or those with serious liver damage, have a higher possibility of transmitting the virus.
Occupational transmission occurs mainly through needlestick (or sharps) injuries. For every 100 needle stick injuries involving hepatitis C virus positive blood, up to 10 result in transmission (10% risk). Overall the risk of acquiring HCV from needlestick injury ranges from 4 to 10%, depending on which studies you read from various countries. With hepatitis B needlestick injuries, the risk of 30% and for HIV the risk is 0.4% (4 in 1000). Healthcare workers are advised to always practice universal infection control precautions and be vaccinated for hep A and B.
Household transmission is rare. It can occur where blood-to-blood contact happens. This could involve your blood spills coming into contact with someone's open cut, or to a lesser extent, the sharing of razor blades, toothbrushes and sharp personal grooming aids. It is advisable to wear gloves when you wipe up blood spills with paper towels and good quality bleach, and to keep razors and toothbrushes separate from those belonging to other family members.
Sexual transmission of hepatitis C is very uncommon. All sexually active people should consider the benefits of safe sex in regard to the wide range of sexually transmissable diseases. If you have any condition that involves scratching, sores or blisters (especially when these may come into contact during sexual activity) the possibility of blood-to-blood contact and transmission 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 advised to use a water-based lubricant to avoid condom breakage, skin damage or abrasion during sex.
Risk of sexual transmission is thought to be influenced by a person's viral load (virus levels in the blood). Risk of transmitting hepatitis C sexually is possibly increased during the initial acute phase of infection - lasting up to six months after catching the virus. People who are already infected can become reinfected with different strains of hepatitis C and experience another initial acute stage of infection.
Breastfeeding: The hepatitis C virus has not been found in samples of breastmilk taken from hepatitis C positive women. Transmission risk via breastmilk is therefore very unlikely. There are many advantages to breast feeding. The choice to breastfeed or bottle feed is up to parents. Breastfeeding mothers should check their nipples before each feed and avoid breastfeeding if they are cracked or bleeding. To further prevent nipple trauma, consider weaning the baby to bottle feeds when he/she starts teething.
Who should have the hepatitis C test?
People who have had blood transfusions or blood products before screening was introduced (February 1990), and people who have ever shared, even once, any injecting equipment (fits, spoons, swabs, water or torniquets) for drugs including steroids, should have themselves tested.
Other people who should consider having the test are those who have been tattooed, had body piercing or a needle-stick injury. People with abnormal liver function tests with no apparent cause would also benefit from having a hepatitis C antibody test. Healthcare workers who perform 'exposure prone procedures' should also have themselves tested and get vaccinated for hep B.
What do tests involve?
Initial screening tests for hepatitis C do not look directly for the virus itself, they look for antibodies (which are produced by our bodies to fight the virus).
Antibody test results are usually positive or negative, but sometimes they come back unclear. Tests that come back positive are redone to confirm they are right. Unclear results are repeated and if still unclear, different types of blood tests are done - see below.
There are also blood tests called liver function tests which look for signs of liver damage.
Antibody tests indicate whether the body has been exposed to the virus and has produced antibodies to fight it. They do not determine whether or not someone still has the virus or how long they've been infected.
After catching the virus, it may take your body up to 6 months to develop antibodies. This is called the window period. During this time someone with an active infection could show a negative antibody test. HCV antibody tests are free if you take your Medicare card to a doctor who bulk bills.
If you get a positive test result and have no risk background - eg. blood transfusions or injecting drug use - it's a good idea to check with your doctor that the blood laboratory double checked the result by using confirmatory tests.
The PCR test is a newly developed test that came onto the market in late 1994. It requires many steps and is expensive. It is not covered by Medicare. PCR tests look for the presence of the virus. The test is generally used for assessing someone for Interferon and monitoring their treatment. Information gained can also be useful in interpreting unclear antibody test results. Like the hepatitis C antibody test, the PCR cannot tell how long someone has been infected.
With all test results, it's advisable to ask for photocopies of the written test results. If you change doctors or wish to get a second opinion, you then have your own records to show to other doctors or specialists.
Pre and post-test counselling have three main aims: to prevent transmission of the virus, to provide support and to help ensure good management and treatment. In pre/post-test counselling, your doctor should briefly discuss: reason for having a test, history of HCV, meaning of test results, routes of transmission, general outcome of infection, treatment options, lifestyle issues, implications for life assurance and confidentiality. Your doctor should also check if you have adequate emotional support in case of a positive test result.
Your doctor should provide all the information that allows you to make your own decision whether or not to be tested. he or she should also be able to refer you to health services and/or community support services.
If you feel that you have received inappropriate treatment or your right to confidentiality has been breached and would like to complain call the Health Services Commissioner on 96555222.
Regular blood tests are used to measure the general condition of your liver. These are called liver function tests. These tests give useful information but other tests may be needed to give an accurate indication of the condition of liver cells.
Your doctor and/or specialist will also monitor whether you have any hepatitis C related symptoms or liver damage, and your general level of health.
How do I know what is happening?
Liver function tests measure levels of particular liver specific enzymes in your blood. These enzymes are found in increased levels if lever cells are damaged and excess enzyme 'leaks' into your bloodstream.
Liver function tests are only a rough guide to the severity of liver damage from hepatitis C - if damage exists. ALT is the most commonly monitored enzyme in liver function tests. Because of differences in technology, 'normal ranges' quoted by laboratories may differ. This means you shouldn't compare your ALT result from one laboratory with results from a different laboratory. Be guided instead by the normal range quoted by your lab at the time of your test.
A doctor can offer ongoing evaluation of your condition by interpreting differences in liver function test results over the last 6 months or so, and whether or not you have physical symptoms or signs of liver disease. Liver function tests are done monthly, quarterly, twice a year or annually, depending on the individual case. It is advisable to ask for your own photocopies of all test results.
Liver damage may be occurring even when liver enzyme levels are normal. In some cases, where ALT readings are consistently high for a long time, where they fluctuate greatly or if the readings don't correlate with presence or lack of symptoms, a specialist may suggest a liver biopsy is done. Some doctors recommend a liver biopsy after 10 to 15 years of infection and every 5 years thereafter.
Using a special needle, a specialist takes a small sample of your liver. This is then examined under a microscope. The specialist can then give an accurate report on the condition of your liver.
What is a liver biopsy?
A biopsy is the best way of determining the condition of liver cells. After the skin is sterilised and an injection of local anaesthetic given, a special needle is passed 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.
For people with blood clotting disorders, liver biopsies are not advised because of the small risk of internal bleeding. Discuss the procedure and possible risks with your doctor. Some people experience pain during the procedure, others don't even realise it has been done. Local anaesthetic is always used, but if you are concerned, ask for some pain killing tablets and something to calm you down.
After the procedure, you will be asked to lie still for several hours, so you might like to take a book or a personal radio-cassette. The biopsy result outlines the condition of various parts of the liver and individual types of liver cells in great detail. The biopsy results will be given to you to take back to your GP. You should ask for a photocopy for your personal records.
What treatments are there for hepatitis C?
Doctors may suggest interferon treatment. The course of treatment currently recommended is for twelve months. In one out of four cases, it results in long-term benefit to the liver. Because interferon has only been used for hepatitis C for a relatively short time, doctors aren't sure if the long-term benefits are permanent. The treatment does have side effects.
Some people with hepatitis C try natural or alternative treatments. Traditional Chinese Medicine is one option. this can include a mixture of acupuncture and Chinese herbs. Homeopathy and herbalism are other options. If you decide to try alternative therapies, it is important to see a qualified natural therapy practitioner.
Whatever treatment choice you make, it is important to find out as much as possible about the different options. Natural therapists should work alongside GPs who can monitor progress and side effects.
Interferon is currently the only licensed treatment shown to have any documented effective response to hepatitis C. Response is measured by the clearance of HCV RNA at six months following completion of therapy. Currently trials are being conducted to examine the effectiveness of combination treatment of interferon and other agents such as ribaviran, thymosin-alpha and amantadine. People with significant symptoms, high ALT levels and chronic persistent hepatitis, and all those with chronic active hepatitis on biopsy, irrespective of symptoms, can be considered for interferon treatment. Treatment involves injections, three times a week, currently for twelve months.
Around 60% of people respond well while on treatment, but only around 20-25% maintain a good long-term response. People who already have cirrhosis respond less well to interferon, only one in 10 having a good response and the side effects can be more severe.
Interferon treatment nearly always involves side effects. Experience of side effect varies. Some people report no problems at all. Others find the side effects so unpleasant they stop treatment. If you are considering treatment you should be aware of the possible side effects before making a decision. If you are concerned, you may decide to postpone treatment until a particularly demanding work project or other personal commitment is completed.
Interferon side effects can include flu-like symptoms - fevers, chills, lethargy, muscle pain, and depression. Sometimes these symptoms may mean that a person has to stop the treatment. Side effects may gradually lessen as a person's body develops a natural tolerance to the drug. Depression and mood swings may worsen and need to be monitored closely.
If someone has a history of psychological problems such as depression, an initial psychological assessment should be given. Interferon treatment may then be given but will be monitored especially closely as it can worsen such pre-existing conditions. Less common side effects can include mild temporary hair loss, blood disorders, thyroid disorders, skin lesions and worsening of psoriasis (a skin disorder). Most side effects will usually go away once treatment stops.
A number of other complementary or alternative therapies including Chinese, Japanese and European Herbal medicines, homeopathy, dietary therapies and other natural therapies are being investigated. However, these therapies have little scientific support and without rigorous trials cannot be assumed to be safe or effective.
Treatment centres must offer the following facilities: a nurse educator/counsellor for patients, 24 hour patient access to medical advice, a day-stay liver clinic and facilities to do safe liver biopsies.
Current guide-lines for specialists prescribing Interferon for HCV include:
People who have cirrhosis cannot gain access to government supplied interferon (Section 100 PBS). Interferon is available for these patients if the hospital is willing to fund it, although this is not common. People with cirrhosis could also seek to recover treatment costs from their health fund, or could seek further treatment within current interferon trials. These trials are being conducted to fine-tune treatment strategies.
Natural therapies are becoming increasingly popular to people with chronic debilitating diseases searching for quality of life, for which Western Medicine still has little to offer as a cure. Some natural, complementary and alternate therapies have been used to treat hepatitis C and its possible symptoms. To date, there have been few controlled research trials in Australia to check the efficacy of natural therapies in treating hepatitis C. Good results have been reported by some people using natural therapies but others have found no observable benefits. As with any treatment, medicines or dosage combinations can be harmful, even 'natural' medicines - wrongly prescribed, can potentially damage your liver.
Some people may choose natural therapies. Others may not. Some may use them in conjunction with pharmaceutical drug treatments. Whichever way you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to:
Remember, it's your body, it's your health, the consultation is about you, therefore you have the right to ask any relative question of any health practitioner and expect a satisfactory answer. If you're not satisfied, shop around until you feel comfortable with your practitioner.
You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some natural therapies. It pays to ask your natural therapist about money before you visit them. Many will come to arrangements about payment - perhaps a discounted fee?
If you decide to use natural therapies, it's vital that you see a practitioner who is properly qualified. It is also advisable to talk to your medical doctor or specialist and your natural therapist about the treatment options that you are considering. It's best if they're able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, consider changing your natural therapist.
What can I do myself?
Cut down or stop alcohol use
Learn how to manage stress
Seek counselling if needed Rest when you feel unwell
Talk to someone who you can trust about your feelings or problems
Eat a well balanced diet
When taking prescription or over-the-counter drugs, follow the directions carefully
If you inject, use safe injecting methods
As with any chronic disease, maintaining the best physical and psychological health will help you cope with any symptoms and illness. Although there is no proven link between diet and progression of hepatitis C, some people with the condition do report feeling better when avoiding fatty foods.
Controlling alcohol use, eating a healthy balanced diet, planned exercise, managing stress, discussing and sharing your emotions, getting adequate rest and giving up smoking will all help to keep you as healthy as possible.
Alcohol use is probably the most important factor because alcohol is a poison to the liver. Doctors advise that men shouldn't drink more than 7 standard drinks a week - for women, 4 standard drinks - and that you should have at least two alcohol free days a week.
If you find the goal of giving-up 'cold turkey' too daunting, the following suggestions may be useful:
For more information, phone Directline, the Alcohol & Drug Information Service (see page 19).
Some prescribed and over-the-counter medications can be harmful to a damaged liver if directions are now followed. Many medications may seriously damage the liver when taken in high doses or for too long - especially paracetamol. It is therefore important to consult a GP or pharmacist about your current medications, or any proposed medications, and follow the directions. If you have serious liver disease (eg. cirrhosis) it is best to avoid aspirin and to consult your specialist about all medications.
Hepatitis C has emerged as the most serious health problem for people who inject drugs. The majority of people who have injected drugs have hepatitis C so those users who don't yet have hepatitis C are at great risk of infection.
Injecting drug use and hepatitis C
As estimated 65 to 90% of people who have shared equipment to inject drugs have the virus. Some people who have shared injecting equipment once or twice have caught hepatitis C. It doesn't matter what is injected - heroin, methadone, pills, speed or steroids. It is how the drugs are injected that is a potential risk for transmitting infection.
Like anyone with hepatitis C, if you inject drugs you need adequate medical follow-up after a hepatitis C diagnosis is made. Awareness of infection is important, as is knowledge of safe injecting practices and recommended lifestyle changes.
Methadone and hepatitis C: If you're on a methadone program you may be able to access initial hepatitis C antibody testing and ongoing liver function test monitoring through your prescribing clinic. If the clinic does not offer such services, ask for a referral to a GP who does. The effects of methadone can alleviate possible painful symptoms of hepatitis C. Although this may be helpful, it can camouflage early signs of liver damage (if it develops). Flu-like hepatitis C symptoms may give the impression that you are on prescription pills. If this causes problems with staff at the clinic, it may be useful to remind them of the complicating effect of hepatitis C symptoms.
If you experience flu-like symptoms of hepatitis C, these symptoms should not be misinterpreted as withdrawal symptoms from opiates. People should be careful with methadone dosages and aware of their real tolerance for drugs. This is especially important when liver damage is severe. If you inject drugs, you can obtain specific and accurate information on injecting drug use and hepatitis C from VIVAIDS.
Harm minimisation: If you inject, you should consider three health risk factors. Firstly, there is the unknown strength of street drugs and that people have different drug tolerances. Secondly, street drugs may contain dangerous impurities. Finally, if you already have hepatitis C, there is the possibility of re-infection with another strain of hepatitis C or other viral infections like HIV or hepatitis B.
Some drugs, due to their specific effects, impair health and increase susceptibility to illness. If you inject, you may be advised to consider the health complications involved. You can reduce risks by:
use a new fit for every hit
and remember whenever possible to wash hands before and after using
Cleaning fits: We don't know that disinfection or cleaning really works so be safe and use all new equipment every time you hit up. Reusing fits should be a last option only. If you're cleaning fits, remember the following guide-line:
Remember that this way of cleaning fits can't be guaranteed to kill the hepatitis C virus. Taking time with the above steps improves your chances of avoiding transmission of hepatitis C, but ideally -
Does hepatitis C affect women differently?
Hormonal effects of hepatitis C can involve menstrual irregularities, particularly if you are experiencing significant hepatitis C symptoms. It is important that your general health is checked as well as your hepatitis C monitored.
Birth control: If you are experiencing significant hepatitis C symptoms, using the oestrogen-based contraceptive pill may be inadvisable. In these cases, the progesterone -pill or Depo-Provera may be preferable. In any case, you should consult a woman's health practitioner.
Hormone Replacement Therapy: If you have severe hepatitis C symptoms you may need to discuss with your doctor or specialist whether hormones should be used for menopausal symptoms. If this is the case, external vaginal creams and skin patches are probably better than pills.
Issues for partners, parents, family and friends
Vertical transmission: This relates to transmission of the virus from a hepatitis C positive mother to her baby during pregnancy or at birth. It occurs in less than one in 10 births. If a mother contracts hepatitis C during pregnancy, though, the risk of transmission is increased above one in ten (due to her increased viral load). For most hepatitis C positive women, the overall risk of vertical transmission is quite low and the outlook for babies who are born HCV positive does not warrant termination of pregnancies.
Testing of infants: If you feel it is necessary to test babies and toddlers, it is important not to test them before the age of 12 months (see mother to baby transmission)
Sexual transmission is very uncommon. Hepatitis C is not classified as a sexually transmitted disease but people who have sex with multiple partners should consider the necessity for safe sex in regard to the wide range of sexually transmitted diseases (see sexual transmission)
Disclosure: At some point in time, people who have hepatitis C may decide to tell their current sexual partner(s). When another partner is advised of HCV infection, it may assist to have written hepatitis C information on hand - such as this booklet or the brochure - Hepatitis C: a brief introduction.
HCV transmission to family members is uncommon:
Hepatitis C is not transmitted by ordinary social contact. There appears to be no risk associated with:
It is better not to share razors, toothbrushes or any items able to be contaminated by blood. All homes should have good first-aid kits including disposable rubber globes regardless of whether anyone has hepatitis C. If you have hepatitis C, you should clean and cover cuts with waterproof dressings. Spilt blood should be cleaned up using paper towels and bleach straight from the bottle. Bloodstained items such as band-aids, dressings, tampons and pads should be secured in plastic bags before going into a bin.
What does hep C mean for kids?
'Not enough is known about hepatitis C to judge whether it physically affects children any differently from adults'
Although many studies have been done on adults, particularly people who have had blood transfusions, there have been few studies done on infants and children. It is difficult to say if there would be any major differences to the outcome of hepatitis C infection in children.
Who should I tell?
If you have hepatitis C you are under no legal obligation to tell others. It is up to you to decide whether to tell anyone of your hepatitis C status.
Carefully consider any decision to tell others as they may act with prejudice.
Hepatitis C positive healthcare workers who perform 'exposure prone procedures' should be guided by their State or Territory health authority's guidelines on the performance of exposure prone procedures.
Coping with diseases like hepatitis C can be easier when you can talk to someone close to you about what's happening. Although this usually is helpful, disclosure can sometimes result in rejection.
Individuals are not personally obliged to inform anyone of their status. General Practitioners and blood testing laboratories inform health department disease monitoring authorities of HCV positive test results. This information is treated confidentially and used for statistics to help in planning health services where they are most needed.
Within workplaces and healthcare settings, government-endorsed universal blood and body fluid precautions and other procedures are intended to reduce the risk of transmission of HCV. Health authorities recommend that people with HCV inform healthcare workers fully of their health status as this is often necessary for good health care.
Some healthcare workers may have judgemental attitudes or unnecessarily exaggerated fears of infection. People should carefully consider whether to inform healthcare workers, or which healthcare workers to inform, in light of possible discrimination.
'Treat all blood as infectious. Applying universal blood and body fluid precautions, to all blood spills, prevents both transmission of hepatitis C, and discrimination'
Surgeons, operating theatre nurses, dentists, dental assistants and other healthcare workers who carry out 'exposure prone procedures' should be guided by health department policies. In Victoria, if you are a hepatitis C positive healthcare worker who performs 'exposure-prone procedures' and are unsure of the implications for your career, you could contact the Victorian Hepatitis C Educator and Counsellor.
If you have hepatitis C you should not donate blood, semen or organs.
Some people will experience hepatitis C symptoms that will interfere with their ability to work. Centrelink (formally the Department of Social Security) provide a range of financial support services to assist these people, including Disability Support Pension, Sickness Benefit or the Carers Pension.
Enquiries: 13 2468
Disability Support Pension:
Complaining / Appealing against a Departmental decision
If you are unhappy with the way you have been treated by Centrelink, you can complain. For more information, contact the Welfare Rights Centre - a community legal centre which assists people with Centrelink problems. See page 20..
If you think a Departmental decision is wrong you can follow these steps:
You can request a review of the initial Department decision by your regional office. This will probably be carried out by the person/s who made the original decision.
If you are unsatisfied, a (semi-independent) DSS Authorised Review Officer can review the decision. If you are unhappy with this review, he/she can give you forms and tell you how to proceed further.
The next level of appeal is the Social Security Appeals Tribunal. Although this level appeal is free, it is advisable to obtain legal advice (contact Welfare Rights Centre).
If you are unsatisfied with the previous step, you can appeal to the (independent) Administrative Appeals Tribunal. This level of appeal is also free but it is advisable to obtain legal advice and representation. For more information, contact the Welfare Rights Centre. They can provide information, advice, representation and referrals.
If you know you have hepatitis C, you will probably have to pay a higher annual premium, or may be refused cover, depending on the type of insurance.
If you feel you are being unfairly discriminated against in regard to either obtaining insurance cover or receiving a payout, refer to the legal contacts listed later.
What about insurance?
Successful insuring involves skilful calculating of risks. A certain risk classification is used for assessing clients with hepatitis C. This determines the correct amount of annual premium a company should charge in order to make an overall profit.
People with hepatitis C can expect to pay increased premiums. This relates to the following main insurance packages:
Income protections covers someone if they become ill or injured. The company will pay a percentage of the person's normal wage for a certain period of time. Often people who are self employed take this type of cover.
Life assurance is where a person pays a certain amount of money each year (called the premium). This money is paid until the person is 65 years old, or the expiration of the policy. If he or she dies prematurely, a lump sum of money is paid to a selected beneficiary - usually a partner or dependents.
Total and permanent disability is cover for when someone experiences a bad accident or permanent sickness that leaves them permanently unable to work.
Trauma cover pays people a sum of money to assist in dealing with specific events such as heart attack, cancer or organ transplant.
People with hepatitis C are assessed individually and are not necessarily denied insurance cover. A number of personal factors would affect assessment of a new client. Risk classification formulae are based on current existing data. A new data becomes available, insurance companies will review their approach. If you feel you are being discriminated against in regard to obtaining insurance cover, receiving an insurance payout or other insurance matters, refer to the legal contacts listed. For detailed information on life assurance, contact the Life, Investment and Superannuation Association also listed.
What can be done about discrimination?
It is important to remember that people with HCV should not be treated differently from anyone else. This applies to all of everyday life, including buying or renting goods or services, healthcare services, applying for a job, getting a promotion at work or maintaining privacy in the neighbourhood. Anti-discrimination legislation covers people with hepatitis C because viral infection is deemed as a disability.
How people might have caught the virus is not important. Those who have the hepatitis C virus are covered by anti-discrimination laws. All people should be treated equally, whether or not they have hepatitis C.
If something happens that seems to be against the law, try talking to the person or organisation that you feel is discriminating against you. Tell them you think that it is against the law. Use whatever help you think you may need - for example, if its a work problem you could ask your Union or an Equal Employment Opportunity officer to help. The Hepatitis C Council may be able to advise you how to proceed. You can also seek free, confidential and impartial advice from the Victorian Equal Opportunity Commission.
The Victorian Equal Opportunity Commission has the legal power to investigate a complaint, and if it appears to be against the law, to try to conciliate it. Conciliation means trying to reach a private settlement. Negotiated outcomes may include job reinstatement, an apology, policy changes and compensation. Most complaints are conciliated successfully. Those that arent would to the Anti Discrimination Tribunal.
If you feel you have been unfairly dismissed, and work under a state award, you could lodge a complaint with your state Industrial Commission. If you work under a Federal award, you would need to contact the Commonwealth Industrial Commission.
If I need help, where can I get it?
If you have just received a positive test result or are considering having a test, you could phone the Victorian Hepatitis C Helpline on 9349 1111 (1800 800 241 for country callers, 008 032 665 TTY for deaf callers).
When you are considering being tested or when receiving test results, you should be counselled by your doctor. If you feel uncomfortable seeing your regular doctor, you might like to go to a sexual health centre or one of the clinics listed below (marked healthcare services).
If you are affected by hepatitis C, you can join the Hepatitis C Council of Victoria to receive regular information updates and other services.
If you need more counselling, your doctor should be able to refer you to a counsellor. Sexual health or Drug and Alcohol counsellors can provide counselling and can refer people to other services for help (see Sexual Health Centres or Alcohol and Drug Information Services, below). If you need other forms of support because of physical, emotional, medical or family needs, community support services can be utilised.
Services relating to hepatitis C are provided by state or federal government, or by the medical and healthcare profession. Services are also provided by independent or community organisations.
Some services are specific to hepatitis C, such as the Hepatitis C Helpline and Support Line. Other specific services include home detox, respite care, home shopping services, and home modification or maintenance services.
People with hepatitis C can also seek care, treatment and information from general practitioners and hepatitis specialists. 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, or phone any of the following groups:
HEPATITIS C INTERSTATE COUNCILS
HEPATITIS C INTERSTATE COUNCILS
LIVER CLINICS AT HOSPITALS:
MAKING A COMPLAINT: DISCRIMINATION
HEALTH SERVICE COMPLAINTS
COMMUNITY HEALTH CENTRES - in your local areas See white pages
RURAL SUPPORT GROUPS
DRUG COUNSELLING, SUPPORT & REFERRAL
Direct Line 03 9416 1818
1800 136 385
For referral to all NSEP outlets, Community Health Centers and some chemist shops who well equipment. Detailing locality, hours of availability, Foot Patrol and Off Site services.
Look for this symbol denoting NSEP outlets
PRIMARY NEEDLE SYRINGE EXCHANGE PROGRAMS
FOR AFTER HOURS MOBILE SERVICES
Tell me more about the Hepatitis C Council of Victoria Inc.
The Hepatitis C Council of Victoria Inc. provides education, information, community support, referral services and advocacy to those infected and affected by hepatitis C. The Hepatitis C Council of Victoria provides a range of support and information services including:
The Council is a community based organisation funded by the Department of Human Services and governed by a membership elected committee. Membership details can be obtained by calling the Council on 9639 3200 or country callers 1800 703 003.
The Council is currently recruiting and training volunteers to participate in community education through speaking first hand of their experiences of living with hepatitis C. The speakers will be trained to address community organisations, health or welfare workers, government bodies, schools, voluntary and workplace groups.
The Council provides hepatitis C education to any group in the community with hepatitis C issues.
A regular bi-monthly meeting held on the first Sunday in the even months. People can use this forum to discuss issues surrounding HCV in a friendly and confidential environment.
There are currently several support groups active, emerging or planned throughout Victoria. The Council is currently promoting the initiation of Rural Support Groups. For more information regarding support groups in your area, telephone the Council.
The Telephone Support Line is staffed by hepatitis C positive volunteers and provides information, support and referral to other services. It is primarily for people directly affected by HCV.
Our bi monthly magazine highlights national, local and international hepatitis C news, personal perceptives, research and new initiatives in Australian health care.
The Council, through liaison with The Haemophilia Foundation and the Victorian Drug users Group VIVAIDS, have successfully negotiated the implementation of 2 joint projects.
The Council disseminates brochures and other printed information from a range of other organisations and also prepares and distributes its own information packs and topic sheets.
For further information regarding any of the Council services drop in to our office
or telephone 9639 3200, country callers 1800 703 003.