Stigma and Discrimination
People who live with a liver condition such as hepatitis B or hepatitis C have reported being discriminated against.
This may occur accessing health care, employment, migrating to another country or in contact with friends and loved ones.
Others have experienced stigma while living with a liver condition.
Stigma and Discrimination FAQs
What is discrimination?
Put simply, discrimination occurs when someone is treated differently or less favourably based on who they are as a person. People are usually discriminated against based on their race, sex, or sexual preference, but it can also occur towards a health condition like viral hepatitis.
What is stigma?
Stigma is the negative social attitudes people have towards an individual’s behaviour, appearance, or identity. People living with a liver condition such as viral hepatitis can be stigmatised due to ignorance or fear about the condition. Stigma can be stopped by challenging it and education those around us.
Who do I have to tell?
In Australia, a person’s viral hepatitis status is their business. It is your right and personal decision to choose whether or not you disclose, and in most cases you don’t legally have to. However, there are a few circumstances where you may be required to disclose.
Who should I disclose my status to?
Viral hepatitis is a notifiable disease, meaning that if you see a doctor for a blood test, your positive test result and other details will be sent to the Victorian Department of Health and Human Services.
This helps the department monitor and control infectious diseases. However – your personal information is de-identified and kept confidential.
What if I experienced discrimination with a health service?
If you have experienced discrimination within a health service or by a health practitioner this could be illegal behaviour.
Health services cannot discriminate against someone on the grounds of a disability such as hepatitis B and/or C. They also have to abide by certain principles and where they don’t, you can complain. This means, for example, that health services do not have the right to:
- Refuse service because you have hepatitis B and/or C
- Bully or harass people due to having hepatitis B and/or C
- Otherwise disadvantage someone due to them having hepatitis B and/or C
- Share information about you outside of normal confidentiality laws
If you would like to talk to someone call the LiverLine on 1800 703 003 or speak to us on webchat.
https://www.ahpra.gov.au/ (Regulating Australia’s Health Practioners)
Visit the Victorian Equal Opportunity and Human Rights Commission website – Visit site
Do I have to tell Work?
For almost all jobs, you do not need to tell your employer or colleagues that you are living with viral hepatitis. There are a small number of professions that may require you to disclose your status or have a blood test, such as:
- If you are a healthcare worker performing exposure prone procedures (EPPs).
- If you work for, or are applying to join the Australian Defence Force.
Some jobs may require you to provide evidence that you have been immunised for hepatitis B. If you are already living with chronic hepatitis B, you may want to consider seeing a doctor who can write a letter for your employer explaining the minimal risks involved with your condition and your suitability for the job.
Can I take time off from work to attend a medical appointment?
Yes, you can. As this is considered a reasonable adjustment according to the Equal Opportunity Act.
Can I donate blood if I’m living with viral hepatitis?
If you are currently living with viral hepatitis, you cannot donate blood. If your body has cleared hepatitis A or hepatitis B, you can donate blood after 12 months.
If you have ever lived with hepatitis C, you are ineligible to donate blood.
What are my rights If I do pass on my hepatitis status?
Your healthcare provider must keep your information safe and confidential. Confidentiality protects your right to privacy. It is illegal for anyone to pass on your medical records without your permission, including to your partner, family, friends, employers, or other healthcare workers.
Do I have to disclose to: Friends & Family
While there are no legal obligations for you to disclose among family and friends, often they can offer valuable support when needed. If you decide to disclose, they may react negatively at first, so be prepared.
Before disclosing, it’s a good idea to educate yourself about your condition, so you can alleviate any uncertainties your friends and family may have and answer their questions. For example, you can assure them that it is perfectly safe to share food or hug somebody who is living with hepatitis B or hepatitis C
“I found out that I tested positive for hepatitis B. I was living with my parents and my two younger
sisters at the time, but I kept it to myself for almost a year. It just never came up and I was afraid of how my family would react.
One night after dinner I sat down with my parents and said ‘I’ve got something to talk to both you about – last year I found out that I’m living with hepatitis B’. At first they were surprised, but afterwards their reaction was full of positivity and curiosity. They asked some questions and just we talked about it for a while.
They were very supportive. Since then my parents have taken my sisters to get immunised, but nothing changed at home. It was a huge relief knowing that everything was going to be okay.”
Do I have to disclose to: Sexual partners
There is a high risk for hepatitis B to be sexually transmitted. For hepatitis C, there is a low risk. As long as you take precautions to avoid transmission, you do not have to tell a sexual partner that you are living with hepatitis. It is recommended that you always use barrier protection (condoms).
Disclosing your viral hepatitis status to a sexual partner is usually something to carefully consider for personal and ethical reasons, rather than for any legal obligations.
Do I have to disclose to: Insurers
When applying for insurance, you are legally obligated to answer questions and disclose information correctly.
Health and life insurance policies are most relevant to disclosing your viral hepatitis status.
Chronic hepatitis is considered a ‘risk’ to many insurance providers, and you may not be approved for a policy or the costs may be increased. Different insurance companies will have different criteria, so it’s best to talk a professional advisor.
Do I have to disclose to: Sports
All sporting organisations should follow blood rules and infection control procedures when first-aid is needed.
Legally you are not required disclose your viral hepatitis status when participating in almost every sport.
Some martial arts and contact sports may require disclosure or a blood test before participating.
Do I have to disclose to: Education
If you are a student or you have a child living with viral hepatitis, you are not legally required to disclose that information to a school or university.
No educational institutions can treat someone differently or deny them admission based on their viral hepatitis status.
If this occurs, it is discrimination and is illegal.
Do I have to disclose to: Health Professionals
Half a million people in Australia have hepatitis B and/or C. If you work with the public, it is highly likely you have worked with someone who has hepatitis B and/or C, whether you knew it or not.
If someone you are working with tells you that they have hepatitis B and/or C, and you find your interpersonal responses to that person change, for example you are feeling anxious about that person, it might be time to get some training to support you in responding in the best way you can.
Consider learning how to speak the language or taking a online workplace training course.
If sometimes workers change their normal work practices in response to people who they believe have hepatitis. The aims of this behaviour change can have good intentions behind it, for example, to prevent transmission. This could suggest something is not quite right, either with the established work practices in your organisation, or that some more information would be helpful for you.
- If you or your colleague have behaved in the following ways perhaps you should consider learn how to work with someone who lives with a liver condition such as viral hepatitis:You have or a colleague has shared about someone’s hepatitis with other organisations/workers, where this is not relevant to their care, and especially when they have not consented to this information being shared.
- Changing practices around infection control procedures, such as using disposable instruments where you would not normally
- Highlighting the fact that someone has hepatitis on their record, in a way that implies added danger or concern
Tips to help you reduce stigma
- Person-first Language is more than just the words we use – body language, tone of voice, and eye contact are all important in conveying respect and dignity to a person
- Use language that conveys optimism and positivity
- Use language that is accessible: free from jargon, technical words, and confusing data
- Call out stigma: if someone uses stigmatising language, address it by explaining why it’s a problem and suggest a preferred term
- Be aware of the context of language:
- Some terms may be appropriately used by people identifying within a certain group, but would be stigmatising when used by people outside the group
- Sometimes using and enabling informal, inappropriate, or slang words in conversation is important in establishing rapport. However, it is also important tokeep in mind that appropriate language used with one person maybe offensive when used with others.
Stories from people who have lived through the experience of stigma while living with a chronic liver condition and perspectives from health care workers who seek to make their lives better without judgement.
Research links & resources
- LiverWELL Stigma and Discrimination Resources
- C-Change: Report of the enquiry into hepatitis C-related discrimination
- Multiple stigmas, shame and historical trauma compound the experience of Aboriginal Australians living with hepatitis
- Living With hepatitis C: From Self-Loathing to Advocacy – a personal perspective
- The National Hepatitis B and C strategies
- Victorian hepatitis B plan 2022-2020
- Victorian hepatitis C plan 2022-2030