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Health Records Compromised: Privacy Concerns For People With Stigmatised Conditions

Concerning reports are circulating about a government data bungle potentially exposing ten percent of private health records. Researchers from the University of Melbourne have reportedly been able to establish the identity of patients from confidential data published by the Commonwealth Department of Health. Seemingly this includes MBS and PBS claims data, and is of concern to people living with stigmatising conditions such as hepatitis B and hepatitis C. For more information:

Great progress on viral hepatitis but still too early to celebrate


Media Release

6 November 2017

The number of Australians living with hepatitis C and advanced liver disease has fallen for the first time in ten years but elimination of the virus remains uncertain, according to campaigners.

Published today, the Kirby Institute’s latest Annual Surveillance Report on HIV, viral hepatitis and sexually transmissible Infections in Australia reveals that between March and December 2016, an estimated 30,343 people were cured of hepatitis C following treatment with new direct acting antiviral therapy.

Responding to the Kirby Institute’s report, Hepatitis Australia’s Acting CEO Kevin Marriott said that Australia needs to capitalise on this early success to ensure all Australians impacted by viral hepatitis have access to effective treatment and care.

“As incredible as it is that more than 30,000 Australians have been treated for hepatitis C, there are still 200,000 Australians living with the virus who are at risk of serious liver disease,” he said.

“Australia is a leader in the global response to hepatitis C, but even with cures readily available, the elimination of hepatitis C as a public health threat by 2030 is not guaranteed.

“In 2017, demand for these medical miracles has fallen sharply. A concerted effort is needed to break down the barriers to more Australians speaking to their GP about
hepatitis C treatment.”

The Kirby data also reveals that over the past five years hepatitis B diagnoses have declined by 27 per cent in people aged less than 25 years, largely due to infant and adolescent vaccination programs.

Mr Marriott said that the success of hepatitis B vaccination is good news, but that Australia is still failing to effectively diagnose and treat hepatitis B.

Only 63 per cent of the estimated 230,000 people living with chronic hepatitis B in Australia have been diagnosed, and only a third are having their hepatitis B regularly monitored.

“We urge Australians who know they are living with hepatitis B or hepatitis C to seek a liver check-up and discuss treatment options with their doctor,” said Mr Marriott.

Hepatitis Australia has published a roadmap to eliminating viral hepatitis in Australia, available at National Infoline: 1800 437 222

Media Contact: Fiona Beveridge – 0405 902 826

Documenting stories of family life in the context of hep B or hep C

Researchers at the University of NSW are investigating the impact of family support in dealing with viral hepatitis. They are looking to recruit people with lived experience of hepatitis B or hepatitis C as well as their family support network, to be interviewed face to face, for the My Health, Our Family research project.

“We have more to do to reach our desired sample size of 90,” said Associate Professor Christy Newman from the Centre for Social Research in Health. “We need to recruit more participants but, the recruitment of family members, people with hepatitis B and people who are Aboriginal or Torres Strait Islander needs some additional, targeted, recruitment.”

Interviews, will explore the practical impact on everyday life of serodiscordance, how individuals and their families make sense of and respond to issues of shame, stigma and secrecy, and how they allocate and negotiate responsibilities within the family including: care and treatment, disclosure, information management, infection control, relations with extended family, school, and workplaces.

Recruitment has so far focused on Sydney and the surrounding region. Participants must have lived experience of either hepatitis B or hepatitis C and be over 16 years of age. It doesn’t matter whether they have been cured or not. The term ‘family’ has been defined broadly, to include partners, parents, children, siblings and extended family, as well as families of choice, affinity, or intimate connection.

People who participate in the study will generate new and significant knowledge about the needs and challenges of families affected by serodiscordance, which can inform existing service design and delivery. In addition, having one’s story validated as significant can be a positive and liberating experience for some people who live with a stigmatised condition such as hepatitis B and hepatitis C.

Participants in this study will be offered a Coles/Myer gift card to the value of $40 as reimbursement for their time and any related expenses. Please consider mentioning the study to patients and clients of your service.

All the information is here, including a form for anyone who is interested in taking part.

To find out more, please contact:
0457 241 386

2017 Hepatitis C Change Makers

Hepatitis ACT congratulates the 18 hepatitis C change makers recognised for their innovative, replicable, scalable, feasible and meaningful impacts in hepatitis C elimination. In particular we acknowledge the three Australian recipients: Helen Tyrrell (Hepatitis Australia), Melanie Eagle (Hepatitis Victoria) and Professor Greg Dore (UNSW; St Vincent’s Hospital).

The Economist Intelligence Unit HCV C Change Makers program recognises 18 hepatitis C innovators doing exemplary work in the program’s three thematic areas: multi-stakeholder approaches; screening; and technology. The innovators’ ground-breaking efforts inspire and guide their peers on the path to HCV elimination. The program also aims to spark debate and action on hepatitis C policy and access to care.

While prevention and treatment of hepatitis C (HCV) have traditionally been fragmented, multi-sector collaboration to address health gaps is becoming increasingly common. The success of Australia’s response to hepatitis C has been underpinned by a partnership approach across the government, community, clinical and research sectors.

For 2017 Professor Greg Dore and Helen Tyrrell have been recognised for their efforts in multi-stakeholder approaches.
• Prof Dore heads up the Viral Hepatitis Clinical Research Programme at the Kirby Institute and is an Infectious Diseases Physician at St Vincent’s Hospital in Sydney.
• Helen Tyrrell is the CEO of Hepatitis Australia, the peak community hepatitis organisation in Australia with a mission to lead an effective national community response to hepatitis B and hepatitis C in Australia.

Australia has also been recognised in the area of technology. This looks at the role of technology in delivering information that supports prevention and connectedness to care. The CEO of Hepatitis Victoria, Melanie Eagle has been acknowledged for raising awareness of Hepatitis C amongst healthcare practitioners with online education tools, and amongst patients with a mobile app to assess liver health information.

To find out more and to see who else has been recognised go to


Media Release: 28 July 2017

Canberra organisation Hepatitis ACT has used the occasion of World Hepatitis Day (28 July) to call for urgent action to help eliminate viral hepatitis in the ACT. The theme of World Hepatitis Day this year is “ELIMINATION” and the priority focus in Australia is “TREATMENT”.

“Everything we need for the elimination of hepatitis B and hepatitis C exists already”, said Executive Officer of Hepatitis ACT John Didlick. “These are serious and potentially fatal conditions chronically affecting more than 400,000 Australians and 7,500 Canberrans.”

“We must take advantage of the opportunities that present – such as the excellent new cures for hepatitis C – but we must also pay attention to the basics. These viruses don’t prevent themselves. People don’t diagnose themselves, prescribe their own medicines, or wake up one day with the awareness and knowledge they need to build a plan”, said Mr Didlick.

He continued, “That’s why we need community organisations who can build and maintain special relationships with affected communities. And why we need our partners in drug and alcohol, sexual health, policy and public health who understand that the lives of people living with viral hepatitis matter as much as anybody else”.

The Federal Government now provides affordable access to breakthrough antiviral medicines which can cure hepatitis C in just 12 weeks with minimal side-effects. Yet the majority of affected people have not been treated and are still living with the virus.

There is a safe and effective vaccine for hepatitis B, but more needs to be done to ensure it is made available within communities where the risk of exposure is high. These include Aboriginal and Torres Strait Islanders and other Canberrans who have migrated from parts of Asia and Africa.

Antiviral treatment for chronic hepatitis B helps prevent the development of advanced liver disease including cancer. Yet only 6% of affected Canberrans are receiving these life-saving drugs.

According to John Didlick, our pathway to elimination is simple:

• There are 700 Canberrans living undiagnosed with hepatitis C and a further 1,500 living undiagnosed with hepatitis B. We need to find them and link them to care.
• We need to extend the hep C cure to everyone who needs it, and triple our hep B treatment rates.
• We can reduce transmission of hepatitis C by strengthening and implementing evidence-based prevention strategies in the community and in prison.

“If we can do those things we can be the first Australian jurisdiction to eliminate viral hepatitis as a public health concern. We have much to do but we have made a good start”, he concluded.

Hepatitis ACT urges anyone diagnosed with chronic hepatitis B or hepatitis C to talk to a doctor about a liver check-up and treatment. Anyone who may have been exposed to hepatitis B or hepatitis C should get tested.

About hepatitis B

Affecting more than 232,000 Australians, hepatitis B is transmitted through blood-to-blood contact or unprotected sex. Without appropriate management and timely vaccination for infants, a pregnant woman with chronic hepatitis B can transmit the virus to her baby.

While vaccination rates are high among people born in Australia since the year 2000, they remain low among many people born overseas. Hepatitis B is endemic in the Asia Pacific region and in sub-Saharan Africa. There is also an elevated prevalence within Aboriginal and Torres Strait Islander communities.

The best protection against hepatitis B is to get vaccinated. For those living with hepatitis B, ongoing monitoring and treatment provides the best protection against the development of liver disease and liver cancer.

About hepatitis C

Affecting more than 200,000 Australians, hepatitis C is mainly transmitted through blood-to-blood contact. Most infections result from unsafe injecting practices and can also result from unsafe tattooing or body piercing, medical procedures in foreign countries, household transmission (e.g. shared razors or toothbrushes), from mother to baby, and sexual activity in certain circumstances.

There is no vaccine for hepatitis C, but the virus can now be treated and cured in 95% of cases. New interferon-free therapies became available in 2016 and are very effective, short duration, and without the arduous side-effects of previous medicines.

Global elimination goals

The Global Health Sector Strategy on Viral Hepatitis was adopted by the World Health Assembly in May 2016. Its goal is the elimination of viral hepatitis as a public health concern through:
• 90% reduction in new hepatitis B and hepatitis C infections by 2030
• 65% reduction in deaths from hepatitis B and hepatitis C by 2030
• 90% hepatitis B childhood vaccination coverage by 2020
• 90% of those with hepatitis B and hepatitis C diagnosed by 2030, and
• 80% of those living with hepatitis B and hepatitis C treated by 2030.

MEDIA CONTACT: John Didlick, Executive Officer, Hepatitis ACT, 0402 545 640

It is now easier for GPs to prescribe hepatitis C treatment

Changes to the Pharmaceutical Benefits Schedule in 2016 have made it possible for GPs to prescribe treatment to patients with hepatitis C. With nearly 90% of these patients yet to receive their treatment, your clinic can really make a difference! Testing and treating patients is simple: new treatments result in virtually no side effects and few contraindications.

GPs have a pivotal role in testing and treating patients with hepatitis C. Treating patients is very simple as there are virtually no side effects and only a very limited number of contraindications. It is now recommended that all patients with hepatitis C are offered treatment.

NSW Health statistics show that over 8800 people in NSW have initiated treatment since March 2016, which represents around 11% of the estimated people living with hepatitis C in NSW. This is a good start, but there is more to be done – you can help.

All GPs can prescribe hepatitis C treatment with the support of a specialist. GPs experienced in the treatment of hepatitis C no longer need to consult a specialist to prescribe treatment following changes to the Pharmaceutical Benefits Schedule from 1 November 2016.

You can learn more about testing and treating hepatitis C in primary care by accessing ‘Managing hepatitis C in general practice’ in the Australian Prescriber. Additional resources are available through the Gastroenterological Society of Australia (GESA) and Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM).

Support and advice is available from liver clinic specialists. Details about local liver clinics and other GPs who treat hepatitis C can be found in the Hepatitis NSW service directory at

This article first published on 22 June 2017 in the NSW and ACT June RACGP newsletter:

Experts reject “flawed report” about direct-acting antiviral hep C medicines

On 6 June 2017 the Cochrane Collaboration published a review of all the randomised controlled trials conducted by the manufacturers of hepatitis C medicines in order to get their drugs licensed. In short Cochrane finds that the drugs may clear the virus from the blood, but there is no evidence that they prevent harm from disease or save lives. Further, the review states “The lack of valid evidence and the possibility of potentially harming people with chronic hepatitis ought to be considered before treating people with hepatitis C with DAAs”.

It’s fair to say the review has caused quite a stir; not only because of the findings but also because of their highly credible source – the Cochrane Collaboration. It’s also fair to say there’s a crowd gathering to disparage the Cochrane review and to reaffirm support for the new generation medicines.

Hepatitis ACT stresses that people living with hepatitis C should not delay treatment. “This Cochrane review is no reason for people to put off being treated for hepatitis C”, says John Didlick (Executive Officer), “and it is no reason for doctors to delay treatment initiation”. People who have already been cured of hepatitis C need not be alarmed by the findings, and should continue to follow their doctor’s advice about the need (or otherwise) for ongoing monitoring. The new hepatitis C treatments are fast and effective, and importantly access in Australia is unrestricted. There has never been a better time to talk to a doctor about starting treatment for hep C.

What others are saying about the Cochrane review:

The World Hepatitis Alliance
The WHA has responded criticising the review and noted that these findings are being used by several media outlets to call into question if countries should fund the treatment of hepatitis C using DAAs. The full response from the World Hepatitis Alliance is here:

The Gastroenterological Society of Australia (GESA)
On 15 June 2017 GESA issued a media release entitled “Experts reject flawed report and reaffirm support for new generation hepatitis C therapies”. In it GESA-ALA Chair, Professor Alex Thompson said, “The Cochrane report is flawed. The clinical trials analysed were designed as short-term studies to demonstrate antiviral efficacy in terms of curing hepatitis C. They were never intended to assess mortality and therefore it is not surprising that a mortality benefit was not identified.”

The Guardian
Has published the following article similarly critical of the review:


Hepatitis ACT has learned of recent concerns about a small number of cases nationally of hepatitis A apparently linked to a batch of frozen berries. At the time of writing there has been three cases reported (one in each of Victoria, Queensland and South Australia).

Entyce Food Ingredients has recalled their 300g ‘Creative Gourmet Mix Berries’ (batch code PP150118 with an expiry date of January 2021), a product sold in Australia at independent outlets such as IGA, Foodworks, Foodland, SPAR and Superbarn. This batch is no longer on the shelves at shops, should not be consumed, and should be discarded or returned to its place of purchase for a refund.

If you have consumed this product:

· The risk of infection is low

· See your doctor if you feel sick

· Be vigilant about handwashing for seven weeks

· Any previous hepatitis A vaccination or previous infection will mean you are likely immune.

Whilst highly contagious through faecal-oral contamination, hepatitis A is a short term infection that is rarely fatal. The likelihood of severe complications are much greater for people with pre-existing liver damage such as that associated with long-term hepatitis B or hepatitis C infection. Management involves rest, a sympathetic diet, abstinence from alcohol, the prevention of onward transmission, and occasionally hospitalisation.

Hepatitis ACT takes this opportunity to stress that hepatitis A is vaccine preventable. Pregnant women should delay vaccination until after pregnancy unless there is a substantial risk of exposure. Household or intimate contacts of someone with hepatitis A should receive hepatitis A immunoglobulin within two weeks of exposure. Vaccination is recommended for:

· Travelers to endemic regions

· Plumbers and sewerage workers

· Men who have sex with men

· People who inject drugs

· People living with chronic liver conditions

· People living with bleeding disorders

· People living and/or working in rural and remote Indigenous communities.

An unintended downside of the intense media interest in what is a very small number of hepatitis A infections is that community, public health and media focus is diverted from far more serious, life-threatening and relatively overlooked epidemics such as hepatitis B and hepatitis C. These are not transmitted through food and together they affect around 440,000 Australians of whom an estimated 130,000 are undiagnosed and only a small percentage are receiving anti-viral treatment or guideline-based care.

People seeking further information about hepatitis A, hepatitis B or hepatitis C should contact their doctor or Hepatitis ACT on (02) 6230 6344 or at

The Importance of testing after completing hepatitis C treatment

This notice is prompted by conversations with community hepatitis organisations, specialists, doctors and health consumers. This advice comes with the strong endorsement of Associate Professor Simone Strasser, Senior Staff Specialist at the AW Morrow Gastroenterology and Liver Centre at the Royal Prince Alfred Hospital in Sydney.

It is absolutely essential for anyone and everyone undergoing HCV DAA or other HCV treatments, to return to their treating GP, nurse or specialist at least twelve weeks after completing treatment to have a final blood test that will determine whether their hepatitis C treatment has been successful. This is important both for people accessing treatment via normal (PBS funded) pathways and for people who have legally imported generic medicines (e.g. independently or through buyers’ clubs).

Whilst HCV DAAs are extremely effective, there is a chance that treatment may not have been curative. This can include people whose HCV is undetectable at treatment completion but PCR positive twelve weeks post-completion. When that happens it is vital that the result is known and that the person and their treating doctor consider other treatment options.

We hear from experts working in the HCV treatment field that in some people there is so much confidence in these new DDAs that some are assuming they will achieve cure and they are not returning for their SVR check. It is wonderful to have medicines available that inspire such confidence, but these treatments are not at the 100% cure level yet.

Please impress upon the people you work with and the people with hep C that you talk to about the importance of the SVR test result at least 12 weeks after treatment has ended.

John Didlick
Executive Officer

Australasian Viral Hepatitis Elimination Conference 2017

The inaugural Australasian Viral Hepatitis Elimination Conference 2017, taking place at the Pullman Cairns International, Queensland, 10–11 August 2017, aims to gather those working in the field of Viral Hepatitis – as well as policy makers, researchers, primary health care providers and other individuals committed towards virtual hepatitis elimination. The program will present the latest scientific developments and knowledge and will offer opportunities for structured dialogue in charting the Australasian response to Viral Hepatitis.

There is an urgent need to increase the number of clinicians able to treat hepatitis B and hepatitis C. Until 1 March 2016, therapy uptake for HCV was slow, due to both hard to reach priority populations and the difficulty and length of the treatment itself. In hepatitis B, many people remain undiagnosed and confusion still exists around the idea of a ‘healthy carrier’, masking the need for monitoring and, in some cases, the prescription of effective therapy.

This is the first time that the Australasian Viral Hepatitis Elimination Conference (AVHEC) will be held. It is to be held in the off-year of the Australasian Viral Hepatitis Conference to cater for the educational needs of clinicians and researchers given the major changes that are happening in the sector.

For more information view the conference website or contact the Conference Secretariat:

AVHEC Secretariat
P: 02 8204 0770