In Australia in 2015 it was estimated that 209,000 people were living with chronic hepatitis C and 239,000 with chronic hepatitis B. In the ACT approximately 3,600 people are living with hepatitis C and 4,000 with hepatitis B. The burden of disease and mortality associated with hepatitis B and hepatitis C continues to increase, and preventable infections continue to occur.
Communities at risk
Hepatitis C is preventable and treatable, yet is one of the most commonly notified diseases in Australia. There is no vaccine for hepatitis C. Hepatitis C is not confined to any one age group, social or economic group, race or culture. In Australia the majority of infections are attributable to unsterile injecting drug use. Other risk factors include incarceration, receipt of blood products in Australia prior to 1990, unsterile tattooing or body piercing, medical and dental procedures in developing countries,and less-commonly household transmission through shared personal effects, vertical transmission (from mother to child) and needle stick injuries.
Hepatitis B infection is preventable including through vaccination. The majority of people living with chronic hepatitis B in Australia were infected at birth or in their early childhood in hepatitis B endemic regions such as the Asia Pacific, sub-Saharan Africa, or rural and remote Aboriginal and Torres Strait Islander communities. Most people (95%) infected as adults will recover completely from acute hepatitis B infection. Most infected at birth will develop chronic hepatitis B infection. As many as 38% of people living with hepatitis B in Australia are undiagnosed, however effective treatment is available for those chronically affected.
Many people live with hepatitis C or hepatitis B for many years without being aware. Unfortunately some are diagnosed only when they develop serious liver problems. When people are aware of their hepatitis infection they are able to make lifestyle choices to enhance their health, protect their liver and help prevent serious liver damage, prevent viral transmission to others, and to seek treatment. In some cases, being diagnosed may explain why people have felt fatigued or why certain foods or alcohol makes them feel unwell.
Hepatitis A is a highly contagious form of viral hepatitis with effects ranging from mild to severe inflammation of the liver. Transmission occurs through faecal-oral exposure and no chronic (long term) infection persists. There is an average incubation period of four weeks, after which symptoms may occur. Once a person has been exposed to hepatitis A through infection or vaccination, they develop immunity to future infection.
Stigma and discrimination
Stigma and discrimination experienced by people living with conditions such as hepatitis B & C is associated with negative health outcomes for affected populations. These outcomes also include negative influences on a person’s mental, psychological and emotional health. A range of policy responses (including laws) to stigma and discrimination are in place nationally and in the ACT, however people living with hepatitis B & C continue to report stigma and discrimination.
Stigma and discrimination within the health care sector is commonly reported by people living with hepatitis B and C. For those affected, the negative effects can impact on receipt of care and can create unnecessary barriers to disclosure, diagnosis, management and treatment.
Stigma occurs as a result of perceiving a characteristic of a person as deviant (different) from the norms and expectations of the majority. Stigmatised people are labelled as different. The source of the labelling can be external (e.g. another person, an organisation) or internal (i.e. internalised or self-stigma).
Discrimination occurs when labelling, perceptions and stigma begin to affect how a person or group is treated. Discrimination is unfavourable treatment because of a particular characteristic or difference. Sometimes discrimination is obvious, and sometimes it is more insidious.
Regardless of whether an instance or pattern of stigma and discrimination is intended or unintended, actual or perceived, it has the same effect on the affected person.
It is against the law to discriminate against a person living with hepatitis B or C in most circumstances. The Federal Disability Discrimination Act 1992 makes it an offence to discriminate on the basis of a person’s disability (including chronic viral hepatitis) anywhere in Australia. In the ACT there is also the Discrimination Act 1991. Discrimination laws cover acts of discrimination occurring in public life.
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Rights and responsibilities
When a hepatitis B or C affected person must disclose
There are very few instances when an infected person is legally required to disclose viral hepatitis:
- If giving blood to the blood bank and you know you have hepatitis B or C, you are required to disclose this to them and your blood will not be accepted for donation. When blood is donated it is also screened for a range of infections, including hepatitis B and C. You may also be required to disclose if donating bodily organs or other bodily fluids, such as sperm.
- If you are a health care worker who conducts exposure prone procedures and you have hepatitis you may be required to notify your employer. Disclosure requirements differ from state to state. Hepatitis ACT, your state/territory health department and your professional body or union will be able to provide you with more information about local requirements.
- Some insurance policies, particularly life insurance, require that you disclose any infections, disabilities or illnesses you have that might influence the insurance company’s decision to insure you. If you don’t disclose this information it may affect future claims you may make. Be sure to read all insurance policies carefully and seek advice if you feel you need to.
- If you are a member of the Australian Defence Force and you have hepatitis B or C, you will have to disclose this. You are also required to disclose any existing medical conditions on application to enter the Australian Defence Force.
Should an affected person disclose to others?
Some people find that disclosing their hepatitis status is daunting and it is common to worry about how others will react. It is possible that a person disclosing their hepatitis status will be treated differently or discriminated against once people know. On the other hand there can be benefits to telling selected people. Disclosing can allow others a greater understanding of the health condition and can enable friends and family to be a source of support.
In most situations, whether or not to disclose hepatitis status is entirely up to the affected person. In making the decision whether or not to disclose, it may help to consider how people might react to the news, how that reaction might impact on the affected person, and how best to respond to any negative reactions.
Points to consider when considering disclosure to others:
- It can help to find out as much as possible about hepatitis before telling others. Providing people with accurate information about hepatitis B or C can help correct misconceptions they may have.
- Some people find it useful to practice disclosing in their mind or to a friend, confidant, counsellor or hepatitis worker, before disclosing to others in their life.
- There are better times than others to share with someone new information about a health condition. It is important to have the discussion when both parties can give the matter sufficient consideration.
- If possible, having a supportive person on hand or easily contactable when disclosing can help.
- It can be a shock for friends or family to find out that a loved one has hepatitis B or C. It is important to give the person time to come terms with this new information. Having a contact number on hand to access further information or support is important (Hepatitis Infoline: 1300 437 222).
- Remember that different people will react differently when told about hepatitis B or C. If the outcome is negative, it is important to remember that this is not a reflection on the worth of the affected person.