The Education team ran several sessions in July and August, reaching at least 200 people from diverse communities.
They included the Aboriginal community at Maringga Turtpandi, the staff, women’s group and adult education classes at Community Access and Services SA (CAaSSA), English language students at TAFE Gilles Plains, as well as the Filipino community in the Riverland and in Adelaide with the Filipino Community Association.
Hepatitis SA Educator Shannon Wright said they had highly positive feedback at all events. “One Maringga Turtpandi worker said the session they attended had been the best education session they’ve had,” she recalled.
“Another worker said they used to be so scared of people with those viruses, and it was really good to hear about this to reduce stigma. They also appreciated our positive speaker Kath’s candour and courage in sharing her lived experience story.”
Most participants at the community sessions were able to answer questions about hepatitis B and hepatitis C, and after the sessions many confidently went on to take part in our online quiz. And participants at an English-language class at CAaSSA were pleased to hear that the quiz was available in languages other than English.
In addition, Chen Bin, Viral Hepatitis Nurse from Lyell McEwan Hospital, presented an interactive session with the Chinese community. Hosted by the Chinese Association of South Australia, the session was followed by a lively Q&A. All of the 48 participants said they had learnt new things about hepatitis B and would definitely attend a similar activity in the future.
Volunteers at Hope’s Café at Uniting Communities Norwood collected almost 60 entries, discussing the quiz questions with individual customers, many of whom were from disadvantaged communities.
On World Hepatitis Day itself—28 July—we had an all-day community information stand at the Arndale Shopping Centre, where we tested people for hepatitis C and spoke to others about hepatitis B vaccination, hepatitis C testing and treatment, and encouraged people to participate in the online quiz.
We also received 46 entries for a prison-specific hepatitis C quiz run across four sites including Port Augusta Prison, Mount Gambier Prison, Cadell and Mobilong. Participants called the Hepatitis SA Helpline to give their answers. In addition, there were internal competitions in the Adelaide Women’s Prison and at Port Lincoln Prison. Prizes differed at each site, and included Toblerones, notepads and pens, toiletry packs, Nescafe coffee sachets, beanies and sunglasses.
In 2023, Hepatitis SA had a go at getting public buildings to light up green—chosen as the colour of life, vitality and progress—on World Hepatitis Day. Of the 15 venues contacted, three generously agreed to “glow green” on or close to 28 July. Thank you to Adelaide Oval, Parliament House, and Unley Council. The Unley City Council was especially supportive backing up the green lights with social media messages.
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Gavin Finkelstein is the president of Haemophilia Foundation Australia. He has lived with haemophilia for his whole life, and with hepatitis C since childhood. For World Hepatitis Day, Gavin was kind enough to tell us his story of living both conditions and how he was cured of hepatitis C.
Until at least 1995, people in Australia with haemophilia and related bleeding disorders were totally reliant on blood products for all of our treatment.
In my case I was born in 1962 and when I was young I was treated with bottles of whole blood that were infused (each over a 12-hour period) to resolve bleeds. This would happen anywhere between 10 and 50 times a year. This means I was probably infected with the hepatitis C virus (HCV) before I was 5 years old, and then reinfected perhaps hundreds of times over the years. Although HCV has existed in humans for perhaps thousands of years, it was not properly identified until 1989, so there was no way to identify it in the blood of a donor.
Over the years our treatment products were refined, but they were still blood products. For example, we went from whole blood to blood plasma-based products, which were in smaller volumes for treatment, and which didn’t require extended hospital stays. I would be injected with the blood plasma product (called cryoprecipitate) and then go home. I no longer had to be an “in-patient”, waiting for the bottles of blood to empty into me over a 12-hour period.
Another later innovation was plasma-derived clotting factor concentrate: each batch of concentrate was made up of about 10,000 donations pooled together, so the risk for HCV infection by a bloodborne virus was significantly high—if even one of those donors had hepatitis C, it would end up in the pooled mix.
Haemophiliacs were often considered to be “the canaries in the mineshaft” if there was a blood-borne virus infecting recipients of blood products. This was shown in the early 1980s, when large numbers of the haemophilia community were infected with HIV because of our total reliance on blood products: before there was an HIV test, the poorly understood virus had made its way into the donated supply.
After this, our treatment products were heat-treated to destroy the HIV virus. I was fortunate to miss out on HIV, but I was told in 1990 that I had what was then called “non-A, non-B hepatitis”, which we now know as hepatitis C. “Don’t worry about it,” I was told. “There is nothing we can do about it anyway!” Heat treatment of blood products to inactivate HCV was introduced very early in the 1990s, but by then it was too late for a vast number of our community’s members.
In early 1994 I was properly diagnosed with hepatitis C and it had a profound effect on me. I didn’t know if I was going to live! Was there treatment? What was going to happen to me? There was so little information available. I became depressed, I ended the relationship I was in (I didn’t want my girlfriend to see me get sicker and die), I wasn’t working, and I became withdrawn, convinced that this was the end.
…it had a profound effect on me. I didn’t know if I was going to live!
It wasn’t until 2001 that I undertook combination therapy—first Interferon/ribavirin therapy, and then Peg-Interferon/ribavirin—which consisted of over 200 injections of interferon and over 2,000 ribavirin pills over what ended up being an 18-month period. This was when combination therapy, as difficult as it was, was the best hope of being cured of HCV.
I continued to work during this whole treatment period, often getting asked when arriving at work if I had taken my “grumpy” pills. I experienced all the side-effects, and it felt that my brain was just barely ticking over. It cost me promotions at work, I often made mistakes, and I had to be managed during the whole treatment process. All of my work colleagues and bosses knew and had received letters advising of the possible consequences of the treatment, but it still was a monumental effort to work the whole time. And in addition, I was volunteering with Haemophilia Foundation WA (HFWA) and Haemophilia Foundation Australia (HFA). Each evening and weekend I used to collapse, each weekday morning I would drag myself begrudgingly out of bed to attend work.
I completed treatment in 2003, clearing HCV—and then I relapsed 6 weeks later, which was utterly devastating. I decided against trying treatment again for a few years, and ended up waiting and hoping that newer, better treatments might become available.
In 2004 I was part of the HFA team that presented at the Commonwealth Inquiry into Hepatitis C and Blood Supply in Australia, a landmark inquiry whose recommendations still haven’t been addressed or carried out, which has unfortunately resulted in a variety of serious impacts to members of the bleeding disorders community over the 17 years since.
In 2005 I decided it was time to retire due to the impact of the HCV (I was suffering from constant tiredness, a lack of motivation, a foggy head, and feeling generally burnt out) and the physical impacts of haemophilia (I was due for my second knee replacement and I was experiencing chronic arthritis in my ankles, elbows and knees). But in the same year I became president of HFA, which is a voluntary position, and which has been an amazing and rewarding experience. I’ve developed new skills, seen advances in treatments for bleeding disorders and HCV, met amazing people worldwide, and I hope, been able to represent my community in a way that has been of benefit to all.
In 2007 I decided to take the plunge again and try treatment once more with Peg-Interferon/ribavirin. After 12 weeks, sadly, I wasn’t PCR-negative, which meant the treatment wasn’t working, so I discontinued it.
I continued to monitor and follow treatment changes and advancements, bypassing triple therapy (which used Peg-Interferon/ribavirin and a direct-acting antiviral agent) because of the horrendous side-effects experienced by everyone I spoke to about, and because it only had a 40-60% of a successful outcome.
In 2016, when the new generation of direct-acting antiviral medications targeting HCV were approved for use on the Pharmaceutical Benefits Scheme (PBS), I started treatment as soon as it could be organised. After completing the 16 weeks of treatment, which was now just a single tablet a day with no side-effects, I was cured of the hepatitis C which I had been living with for a least 35 years. The fog finally lifted, and I felt great!
Of course, while it was fantastic to be cured of HCV, I still had to deal with the ongoing lifelong consequences of haemophilia: deteriorating joints, chronic arthritis and accelerated ageing. People living with both with bleeding disorders and HCV deal with an overload with chronic health conditions, and it can be hard to prioritise your care and manage your health, especially when hepatitis symptoms like fatigue and brain fog compound your health problems and sap your energy. Having access to a simple HCV treatment with minimal side-effects was genuinely great for us.
… there is no cure for haemophilia, this is a lifelong task. But it is a much easier one without the added burden of hepatitis C.
Nearly all members of the bleeding disorders community in Australia have now been cured of hepatitis C, which is an amazing achievement, but some still live with ongoing issues connected with liver cancer or cirrhosis. Often they need to retire early, which brings with it financial stress and the possibility of spending decades of your life in and out of hospital wards. Having cleared one hurdle, I can focus more on managing my haemophilia. As there is no cure for haemophilia, this is a lifelong task. But it is a much easier one without the added burden of hepatitis C.
If there is anyone out there still living with haemophilia and HCV who hasn’t been in contact with the HF or the Haemophilia Treatment Centre clinicians, please know that there are no impediments to treatment now; there are just the fantastic results that we have all experienced. It is certainly very much worthwhile.
For more information on haemophilia, visit Haemophilia Foundation Australia.
From the archive: see Hepatitis SA’s special magazine issue on haemophilia and hepatitis C here.
The COVID-19 pandemic has seen a common outcome in one aspect of healthcare – people with minor or chronic illnesses putting off seeing their healthcare providers. Unfortunately, for some conditions, there can be dire consequences if you wait. Hepatitis is one of those.
Worldwide, someone dies from hepatitis-related illness every 30 seconds. In Australia, hepatitis is a leading cause of liver cancer and liver cancer is the fastest growing cause of cancer deaths.
The expert advice is for all people with chronic hepatitis B to receive regular monitoring and timely treatment as needed. We are nowhere near…
One in three people in Australia with chronic hepatitis B don’t know that they have it.
More worrying is the fact that only one in five of these people are in medical care. The expert advice is for all people with chronic hepatitis B to receive regular monitoring and timely treatment as needed. We are nowhere near the conservative national target to have half of people with chronic hepatitis B to be in medical care by end of next year.
Not everyone with chronic hepatitis B needs to be on treatment, but experts estimate that about a quarter will need to be on antiviral therapy to minimize adverse outcomes. Left unmanaged and untreated, hepatitis B can lead to liver failure or liver cancer. 2018 saw more than 400 hepatitis B related deaths in Australia.
With hepatitis C, Despite there being a highly effective cure there are still some 130,000 people with HCV – the leading cause for liver transplants in Australia.
One in five of Australians with chronic hepatitis C don’t know they have it. Some know their diagnoses but are not aware that today a simple course of tablets for eight or twelve weeks could rid them of the virus damaging their liver.
Australia is one of the countries on track to eliminate hepatitis C by 2030 – a World Health Organisation target but the number of people starting hepatitis C treatment has been falling after the initial surge in 2016.
Furthermore, the Doherty Institute WHO Collaborating Centre for Viral Hepatitis reported a 19% drop in hepatitis testing in 2020, compared to the same time in 2019. This drop in diagnosis and management will have flow-on effects on progress towards achieving the WHO target.
In South Australia, over 8,000 people with chronic hepatitis C and 14,000 with chronic hepatitis B. While treatment uptake for hepatitis C has been above national average in SA, more than half of South Australians with hepatitis C are still unnecessarily living with a disease that can be cured with little side effects.
South Australia’s progress in hepatitis B is below national average. Only 16% of people with chronic hepatitis B in SA receive medical care and only 5% are on treatment – a long way off from the national targets of 50% and 20% respectively.
Hepatitis B and hepatitis C are infectious diseases with possible serious consequences for those infected, but they are treatable and preventable. With an effective vaccine for hepatitis B and a cure for hepatitis C, both viruses can be eliminated.
The challenge is to find those who are not diagnosed, or not in medical care and offer appropriate pathways for them to manage or be cured of their infection.
Hepatitis can’t wait.
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Speaking ahead of World Hepatitis Day, held on 28 July, Hepatitis SA Executive Officer, Kerry Paterson said that around 150,000 Australians are still missing out on new Government-funded cures for hepatitis C and nearly 200,000 Australians with hepatitis B are missing out on vital care that can provide timely intervention to prevent liver cancer and liver failure.
“Australians from all walks of life can have hepatitis B or C, but a third of a million aren’t coming forward for vital treatment that can save their lives,” she said.
“Some people are not seeking help because they are unaware of recent advances in treatment; others because they are unaware of their condition. One in three people with hepatitis B and one in five people with hepatitis C do not know they have these viruses,” she added.
New Medicare-funded treatments can cure 95 per cent of people with hepatitis C. These treatments can be prescribed by GPs and for most people, consist of daily tablets taken over 12 weeks with few side effects.
10,000 South Australians have been diagnosed with hepatitis C but less than a quarter have received treatment
A record number (50,000) of Australians have now been cured of hepatitis C, but another 150,000 Australians who can be cured, are still living with the virus. Closer to home, over 10,000 South Australians have been diagnosed with chronic hepatitis C, but less than a quarter have received treatment.
Experts believe that people may not be coming forward because they had been living with their condition for a long time, had been put off by stories of brutal side-effects of old hep C treatments or are unaware of the highly effective new cures with few side-effects.
Ms Paterson said that the number of people with hepatitis B who are missing out on medical care is alarming. “There are 14,460 South Australians with chronic hepatitis B. Only 14 per cent are receiving recommended regular monitoring and only six per cent are on treatment,” she said.
A vaccine that protects against hepatitis B is readily available through the National Immunisation Program, but a significant number of people from communities where the virus is common have not been vaccinated.
“There has never been a better time to speak to your doctor about hepatitis B or C,” Ms Paterson said. “We urge people to do it without delay.
“If you think you may have come into contact with hepatitis B or hepatitis C, or if you have been diagnosed, talk to your doctor about treatment options, or call the national helpline on 1800 437 222. It could save your life.”
]]>Locally, about 24 Australians die each week from hepatitis B or hepatitis C. Not as shocking as 25 in 10 minutes but that’s still 1,237 needless Australian deaths each year.
World Hepatitis Day (28 July) is a reminder that Australians cannot afford to rest on our laurels. Although 14 per cent of Australians with hepatitis C have been cured, there are still many, many who need to receive treatment.
Australia’s universal childhood hepatitis B vaccination program will eventually be reflected in less new cases, but our six per cent hepatitis B treatment rate is below the global average (8%) and well below the National Strategy target of 15 per cent. There are 203,000 Australians with hepatitis B who still need to be initiated into regular monitoring and care.
One in five Australians with hepatitis C is not diagnosed, and almost 40 per cent of Australians with hepatitis B don’t know they have it.
In South Australia, hepatitis B treatment rate is only four per cent – below the national average of six per cent.
Clearly, a lot more still needs to be done.
There are 203,000 Australians with hepatitis B who still need to be initiated into regular monitoring and care.
Hepatitis B can be prevented by a safe, effective vaccine and hepatitis C can be cured with success rates as high as 95 per cent. Yet around the world, 1.34 million die from viral hepatitis each year – that’s almost 80 per cent of the South Australian population every year.
Globally, annual deaths due to viral hepatitis rose by 22 per cent from 1.1 million in 2000 to 1.34 million in 2015 and it is expected to further increase. This contrasts with decreases in deaths from HIV, tuberculosis and malaria over the same period. Deaths from chronic hepatitis B complications accounted for 66 per cent of the 1.34 million, with chronic hepatitis C accounting for 30 per cent.
The expected increase in deaths from hepatitis B are due to early childhood infections which occurred before widespread vaccinations started in the 1990s and 2000s. Hepatitis C related deaths are expected to increase because of large-scale transmissions from unsafe health-care procedures and injecting drug use in many middle and low-income countries at the end of the 20th century.
In May 2016, the World Health Organisation (WHO) endorsed the global strategy to eliminate viral hepatitis as a public health threat by 2030, reducing new infections by 90 per cent and deaths by 65 per cent. Led by the World Hepatitis Alliance (WHA) and supported by WHA member organisations world-wide, the campaign was launched on World Hepatitis Day 2016.
WHO has now published its Global hepatitis report, 2017, establishing baseline data for evaluating and tracking progress of the NOhep campaign.
According to the report, there are 257 million people living with hepatitis B and 71 million with hepatitis C. In Australia, four out of ten people with hepatitis B don’t know they have it; worldwide, nine out of ten people with hepatitis B are undiagnosed and four out of five people living with hepatitis C don’t know they have it. In Australia, although hepatitis C diagnosis rate is good, still about one in five don’t know they have it.
There are an estimated 227,000 Australians living with hepatitis C in 2015. New hepatitis C medicines were listed on Pharmaceutical Benefits Scheme (PBS) in March 2016 and the In the 12 months since about 30,000 (about 14 per cent) Australians have been treated for hepatitis C. Universal access to the new drugs means Australia leads the world in treatment rates. For people in many other countries, prohibitive cost keeps the new drugs out of the reach of the majority of people with hepatitis C.
Another 196,000 Australians with hepatitis C need to be reached and treated.
Despite the initial surge in treatment uptake, the number of people in Australia starting treatment is starting to fall off, as easy-to-reach groups complete their treatment. Another 196,000 Australians with hepatitis C need to be reached and treated.
Large numbers of hepatitis B infections go undiagnosed and treatment and monitoring rates of those who are diagnosed remain low. Misconceptions about “healthy carriers” persist. Community education programs on limited budgets are only just beginning, with little promise of continued funding for this crucial work.
Hepatitis is the leading cause of liver cancer in Australia and liver cancer rate in Australia continue to rise as other cancer rates fall. Without on-going effort, the health burden and human cost of viral hepatitis in Australia will continue.
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