NSW HEPATITIS INFOLINE

Feeling better is the new normal after hep C treatment

Feeling better is the new normal after hep C treatment

Feeling better is the new normal after hep C treatmentGren, one of our Community Peer Speakers, has written a guest blog post about his experience of living with and being cured of, hepatitis C.

CW: refers to historical cases of stigma and discrimination

I was diagnosed with hep C in 1990. A routine blood test found that I had an abnormal liver function and another test found I had been exposed to hep C. Back then they couldn’t test to see if I still had live virus in my blood, so it was assumed that I had an active case of hep C. After the doctor gave me the results, he just said, “you have hepatitis C, you should see a specialist” – and that was the extent of his counselling.

The reality of being diagnosed with hep C

Following the diagnosis, I went home a bit shocked and sad, however my partner and family were nothing but supportive, which helped me enormously.

It was early days for hep C treatments, and I opted to do an experimental treatment that took six difficult months and ultimately didn’t work for me (or hardly anyone else, for that matter).

With that ordeal behind me, since I still had hep C, there was nothing much I could do about it so I carried on with my normal life and tried to live as healthily as I could. I ate my veggies, got exercise and didn’t drink much alcohol. I stayed in touch with the various doctors and got very familiar with the good people at Westmead Hospital and Hepatitis NSW, who all helped me with information and news about hep C.

In the past, I’ve described myself as a ‘promiscuous discloser’, although that’s not entirely accurate. I immediately disclosed my hep C status to all my close friends and relatives, but after that I only disclosed to people, I was getting medical support from and others I trusted, and even then, only if I thought it was appropriate.

I’ve been able to disclose to every employer

In a number of ways, it has been easier for me than others living with hep C – I know I’m not a “stigma magnet”. I’m Anglo, straight, older (now), middle class and highly educated. I’ve been able to disclose to every employer I’ve worked with since 1990, and to everyone that’s involved in my life. I haven’t had to hide who I am. I have been fortunate.

While I haven’t been a major victim of stigma or discrimination, I once sat opposite a General Practitioner who said they, “hated ‘junkies’…” and that, “they were a waste of space”. So apparently, if they’d seen me when I was 20 they might have thought I was “a waste of space” too. Needless to say, I never went back to that doctor.

It was a drag knowing that I had the virus inside me, knowing that even though the risk was low that I could unintentionally infect my wife and family. Also knowing that my liver was slowly being damaged and that I couldn’t get rid of the virus, weighed on my mind.

I’ve done treatment three times. In 1991, I took part in the aforementioned phase 3 clinical trial for six months. It was pretty bad, but I was still able to work. In 2006, I did Pegylated Interferon Combo therapy with Ribavirin. It was horrible. 48 weeks of feeling like I had the flu, and the treatment didn’t get rid of the virus either. Finally, in 2016, I tried one of the new direct acting anti-viral therapies (Viekira Pak, which has since been discontinued because there are now even more effective treatments available). For me, it was 12 weeks of very mild side-effects.

I was still able to carry on my life as normal while on treatment for hep C

As everyone says, the new treatments are easy to do and very effective. The one I took has been discontinued, but the replacement treatments have even fewer side effects and treat all genotypes. Despite the few side-effects I did experience, I was still able to carry on my life as normal while on treatment. By the end of it I already knew I was cured.

Going to see the doctor three months after finishing treatment – to find out for sure that it worked – was one of the best days of my life. I had been trying to get rid of the virus for the last 25 years and when he told me I was cured I realised I had finally done it. I laughed and cried when the doc told me and, even though neither of us were the hugging type, we both shared a little hug. I was in such a happy daze that I started to leave without paying. The doc did remind me though, and I asked how much he wanted. He could have asked for, and got, nearly anything from me, but he only asked for my Medicare card. Wow.
Even today I sleep better, I feel better. A few years after being cured, feeling better is the new normal.

Learn more about hep c by getting in contact with our Hepatitis Infoline on 1800 803 990,
or download one of our free online resources.

Published 30 June, 2020

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Hep C: The virus, and the fear, are gone

The virus, and the fear, are gone

Image: Eyüp Belen | Pexels | bit.ly/3e9xIy6

Susan, one of our Community Peer Workers, has written a guest blog post about her experience of living with and being cured of, hepatitis C.

Living with hep C had given me a growing sense of dread; the fear of developing cirrhosis or liver cancer intruded more and more into my thoughts. Fortunately, just as things looked like they might be taking a turn for the worse, hope appeared in the form of an effective new treatment. This is my story.

How I was diagnosed with hep C

I had been a healthy teenager and young adult, full of energy. During the 1990s, my energy started to wane. I was in my thirties so, at first, I thought I was just getting older. But it got worse. The doctor was puzzled, said I might have “chronic fatigue” and sent me for a raft of tests. This is what led to my hep C diagnosis.

I adjusted to living with hep C, but my liver started to get worse

My life began to revolve around having hep C, the consciousness of it ever present in my mind. I adjusted to living with hep C by moving to a low-fat diet, with no alcohol and lots of rest. Overall, at the time, I was doing well. My liver function test (LFT) results showed only a slight elevation in level for a number of years. I clung to the hope that I would be one of the few people who lived with hep C and wouldn’t develop a serious illness.

Interferon was the only option for treatment in those days, and I decided against taking that. I was working and also caring for my young son. Other than the tiredness, I didn’t feel sick and I couldn’t afford to be laid low with the side-effects that were common with interferon. Plus, as I told myself, the interferon “probably wouldn’t work” as it hadn’t for many people.

At some point though, my liver test results started to get worse. My LFTs were climbing and the nausea every morning was increasing. I started reading more about hep C and began to worry about developing a serious illness. That dread became an ever-present fear that dominated my life.

How treatment turned my life around

Then, a few years ago, I read an article about new, easy to take hep C treatments that had a high cure rate. I talked to my doctor, who was encouraging and prescribed Epclusa. The pre-treatment screening tests however, had made me anxious. I worried they’d find I had cirrhosis or cancer. Fortunately, the fibroscan results showed I had nothing as bad as that, although I did have fatty liver disease.

I started the Epclusa treatment, still full of trepidation about side effects. My regular morning nausea waned after only six weeks of treatment, and I began to have more energy. After all that worry, there were no side-effects at all during the 12 short weeks of treatment.

The day the doctor told me my post-treatment result – “no virus detected” – was one of the best days of my life. Then the follow up result. Again, “no virus detected”. I started to live life differently. My everyday activities didn’t change but my energy levels did and so did my attitude. I no longer thought of myself as a person who might start to die soon. I made long-term financial plans. I stopped living one day at a time.

Curing my hep C was one of the best decisions I have ever made

Getting treatment for, and curing, my hep C was one of the best decisions I have ever made. Living with hep C, for me, had been a life full of fear and isolation. Living without hep C has given me a new life with hope for the future.

Life is better, now the fear is gone.

Published 23 June, 2020

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What is World Hepatitis Day?

What is World Hepatitis Day? On July 28 every year, the World Health Organization (WHO) sponsors World Hepatitis Day, a global alert around viral hepatitis. Prevention, diagnosis and treatment are promoted through free hepatitis testing screenings, information campaigns, entertainment, media engagement and vaccination drives.

Why recognise World Hepatitis Day?

Millions of people worldwide are affected by viral hepatitis, with tens of thousands dying every year. Of greatest concern are hep B and hep C – two viruses that can become life-long chronic conditions, eventually leading to liver cirrhosis, liver cancer and, all too often, death. A significant percentage of people living with hep B or hep C are unaware they have it. Even where people know their status, hundreds of thousands are unable to access healthcare, treatment, or cure. World Hepatitis Day is an important event to highlight these issues and drive better outcomes.

Why is hepatitis still a problem?

Around the world, the toll on liver health and the number of deaths caused by hep B and hep C varies sharply from country to country. Some countries are much more able to address viral hepatitis for their people. Poorer outcomes are due to poverty, social inequalities, inadequate information, stigma and discrimination, struggling public health systems, ineffective government policy and/or the lack of political will. Despite advances in medicine and treatment, there is no single easy solution for eliminating hep B and hep C.

How does Australia compare?

Fortunately, in terms of elimination of viral hepatitis, Australia is one of the leading countries in the world. Australia has strong health policies, programs, campaigns, and services as part of an effective strategy to address viral hepatitis.

How is Australia addressing hepatitis C?

For hep C, all Australians over the age of 12 have access to effective and affordable direct acting antiviral (DAA) cures. Treatment is available through local doctors. There are services, such as Needle Syringe Programs, that help reduce risk of transmission. Community organisations and government agencies work to raise awareness of the cure and help people into and through treatment.

How is Australia’s strategy to address hepatitis B performing?

For hep B, while there is currently no cure, babies born in Australia are vaccinated against it; also, any adult who needs to be vaccinated can be. Testing is available and encouraged for anyone from an at-risk group. Should a person be found to be living with hep B they can have regular monitoring of their liver health, and, if required, treatment to manage their viral load.

What is the impact of hepatitis-related stigma and discrimination?

is doing well but there are still issues of stigma and discrimination which prevent or deter people from accessing testing and treatment. Many people remain unaware of the lifesaving treatment options available to them. Myths and misconceptions about transmission and treatment persist in some communities.

Are we ensuring equal access to health services and programs?

While health services are usually easily accessible for most people in the capital cities, that is not the case for regional and remote communities. Poverty and disadvantage significantly impact the ability of too many Australians to access services. The lack of Needle Syringe Programs in prisons leads to greater hep C infection and re-infection rates amongst prisoners. These areas, and others, need work if Australia is to succeed in eliminating viral hepatitis.

How is World Hepatitis Day observed in Australia?

Across Australia, the day is supported by many government agencies, non-government organisations, clinicians, researchers, and communities. They might hold events, education sessions, display banners or posters, or talk to the media. Hepatitis organisations, similar to Hepatitis NSW, exist in every state, territory and federally; World Hepatitis Day marks a particularly busy time of campaign work, and community and stakeholder engagement for us.

In addition to World Hepatitis Day, New South Wales holds Hepatitis Awareness Week over the seven days leading up to and including July 28. This is sponsored by NSW Health and allows community organisations, Local Health Districts (LHDs), and prison clinics across the state to highlight hep C and hep B oriented messages, services and events for their respective communities.

Unfortunately, for 2020, the COVID-19 pandemic will overshadow World Hepatitis Day and NSW Hepatitis Awareness Week. At this stage we cannot say for certain which events or campaigns and services will be promoted in late July. Keep an eye on our social media, events calendar and The Champion for regular updates.

A final thought

Viral hepatitis exists year in, year out, and World Hepatitis Day itself isn’t going to be a cure-all, nor is it meant to be. July 28 acts as a focus for international and local efforts in elimination – to applaud the successes, to highlight existing need, and advocate for changes.

Hep facts

  • July 28 celebrates the birthdate of Baruch Samuel Blumberg, discoverer of the hepatitis B virus.
  • World Hepatitis Day is one of only eight official global public health campaigns marked by the World Health Organization (WHO).
  • There are currently five different hepatitis viruses – A, B, C, D, and E. Each one can significantly impact liver health and, in some cases, lead to death. In Australia, only hep B and hep C are significant community issues.
  • Hepatitis D – which only occurs in people with advanced cases of hepatitis B – and hepatitis A, and hepatitis E – both mainly transmitted via faecal contamination in water, or unwashed hands – are all rare in Australia.

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Kirby Institute releases report on progress of hep C elimination in NSW

Kirby Institute releases report on progress of hep C elimination in NSWThe uptake of direct acting antiviral (DAA) hep C treatments in New South Wales has meant there is a promising prospect for achieving the goals of reducing the incidence of hep C infections and deaths, according to a recently released report from the Kirby Institute.

The Hepatitis C Elimination in NSW: Monitoring and evaluation report 2019 identifies progress towards elimination in New South Wales. It has been developed to report against state, Australian, and global strategies. Specifically, the report looks at the progress made by New South Wales in improving the testing, treatment and uptake of preventative measures for hep C. Reductions in the occurrence, incidence and deaths associated with the virus are also covered.

Positive and encouraging signs

In addition to the positive outlook for elimination of hepatitis C, the report found that unrestricted access to treatment – which is provided for by the PBS guidelines – has resulted in a very broad community uptake. There are indications that people who might be at higher-risk (that is, people who are also usually more marginalised) have had a higher uptake than the broader population of people living with hep C.

According to the report, there is evidence that stable “hep C risk behaviour” and high initial treatment uptake is leading to reductions in new hep C infections. Furthermore, the number of people with advanced liver disease, which had been growing before the arrival of the new cures, is now on the way down.

Stigma and discrimination still an issue

Despite these encouraging findings, the report notes there are relative gaps for some hep C sub-populations in service and impact measures. There are still high levels of stigma and discrimination and lower treatment uptake in many of the areas of the community. Notable areas of stigma and discrimination are among women, people born overseas, and Aboriginal and Torres Strait Islander people; especially where there has also been recent drug use or recent imprisonment.

The road ahead

Hepatitis NSW welcomes the report’s findings and, while it offers considerable encouragement that elimination of hep C in NSW is possible, it still highlights a number of areas that require continued effort to address shortfalls. Hepatitis NSW will continue to work with our community and all other stakeholders to ensure the elimination of hep C in NSW.

To read more and to download the report >>>CLICK HERE

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Changes to PBS for hepatitis treatment mean better and easier access to cure

Changes to PBS for hepatitis treatment mean better and easier access to cureChanges to the Pharmaceutical Benefits Scheme (PBS) from April 1 will benefit a number of community groups affected by viral hepatitis.

Age restriction eased

Firstly, younger Australians – those over 12 years of age – are now able to access direct acting anti-viral (DAA) medication to treat hep C. While a relatively small percentage of the population living with hepatitis C, these many young Australians were still understandably keen to be cured of the virus. It is very good news that the age restriction for under 18s has now been changed.

Genotype testing

Another change sees the removal of mandatory genotype testing. In the early days of DAA treatment, when the medications could only treat specific hep C genotypes, it was important for specialists and treating GPs to know their patient’s genotype; that way they could prescribe the correct treatment. Pangenotypic DAAs (which work regardless of genotype) have been available for some time now and the requirement for genotype testing added an unneeded extra step for people wanting to start treatment.

Nurse Practitioners

Finally, Nurse Practitioners (registered nurses with authority to work in an extended clinical role) can now prescribe s100 medicines in the care and management of people living with HIV and hep B in the community, and also hep C in corrective services settings. As with the other changes, this removes potential obstacles or hurdles to starting treatment for many people, especially those living with hep C and in prison. Hepatitis NSW already has great partnerships with many nurse practitioners across the state (through, for example, our peer work and the Clearing The Path campaign) and this PBS change will further improve the impact of our work.

Hepatitis NSW is very pleased to see these changes and looks forward to assisting the various communities who will benefit. We will be updating our resources and information as necessary.

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Albury Hep C Elimination campaign

Over November 2019, Hepatitis NSW has been running an advertising campaign in Albury NSW, with some social media cross-over into Wodonga Victoria. This campaign is designed for people living with hep C – largely those over 50 years old who no longer inject, or who never injected – to help raise awareness and mobilise them into hep C treatment and cure.

 

Sussan Ley,MP for Farrer, and Albury local Steve Frost

What does our Hep C Elimination Campaign involve?

The campaign is made up of beer-mats in local pubs and clubs; adverts in shopping centres; adverts and take-away cards in public bathrooms; local social media posts; posters and awareness raising activities in public health services including Aboriginal Health Services, NSPs, drug health services, GP clinics, community health clinics and the like.

Why Albury, why now?

We chose Albury because a couple of years ago Hepatitis Australia (our national peak organisation) carried out a similar campaign. We want to build on that; and, because Albury is in the federal seat of Farrer, which is held by The Hon. Sussan Ley.

Direct-acting antivirals (DAAs) were listed on the Pharmaceutical Benefits Scheme (PBS) on 1 March 2016, changing the hepatitis C treatment landscape forever. The Commonwealth fully funded these groundbreaking new treatments, with equal treatment access for all people. There were no restrictions at all, and we have Sussan Ley, who was at that time the Health Minister, to thank.

Since then, around 70,000 people of the then estimated 230,000 people who were living with chronic hep C across Australia have accessed the new treatments. Tens of thousands of lives have been saved and livelihoods improved to the greater benefit of our communities.

 

Forum Speakers: The Hon Sussan Ley MP (Member for Farrer, and Health Minister who had new hep C cures listed on the PBS, 2016), Stuart Loveday (outgoing Hep NSW CEO), Dr Tim Shanahan (Clinical leader and key clinical driver for hep C treatment in the region), Steve Frost (a local with lived experience of hep C and cure), and Alison Nikitas (HARP manager, Murrumbidgee LHD).

Hep C Elimination Forum

Hepatitis NSW invited Sussan Ley to present at a forum on 18 November 2019 at the Atura Hotel in Albury. The main purpose of this forum was to generate some free media awareness to add to the paid part of the advertising campaign. We also wanted to thank Sussan Ley publicly for her significant role in enabling the elimination of hepatitis C in Australia by the year 2030.

Speakers included:

  • The Hon Sussan Ley MP, Member for Farrer, currently federal Environment Minister, former Health Minister).
  • Stuart Loveday, the outgoing Hepatitis NSW CEO.
  • Dr Tim Shanahan, a clinical leader, hepatologist, gastroenterologist and key clinical driver for hep C treatment in the region.
  • Steve Frost, a local with lived experience of hep C and cure. He spoke about how cure essentially saved his life.
  • Alison Nikitas, HARP manager for Murrumbidgee LHD, who spoke of programs to get locals treated and cured.

A number of local media outlets were in attendance, and an article about Steve Frost was written and published by the Border Mail. >>>CLICK HERE

We are running this Albury campaign with full support from colleagues in the Murrumbidgee Local Health District (LHD) and in Albury Wodonga Health.

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Use of Fincol in NSW prisons: preventing hep C transmission

FincolWe know from the ample evidence before the NSW Special Commission of Inquiry into the Drug ‘Ice’ that, like it or not, drugs and injecting equipment find their way into, and are used in, prisons. This is an unavoidable reality.

Hepatitis NSW strongly supports the ongoing provision and use of Fincol as a disinfectant in correctional settings.

Regarding evidence provided to the current Inquiry – and the reporting of that evidence – the impression has been given that Fincol is of ‘dubious efficacy’ when used by people in prison as a disinfectant to clean syringes and other equipment used to inject drugs.

Using Fincol is better than using nothing at all

We know that when Fincol is used as per the manufacturers’ instructions, it is effective in killing hepatitis C and other blood borne viruses.

It is not the efficacy of Fincol that should be questioned, but rather the circumstances surrounding Fincol’s availability and usage, as it is these factors which lead to injecting equipment not being adequately disinfected.

Fincol is not readily available in all areas in NSW prisons. Furthermore, when it is used, people in jail often do not have the ability or time to clean scarce injecting equipment as per the instructions.

Fincol poster

Excerpted from a poster produced by Hepatitis NSW for distribution in NSW Prisons to promote correct usage of Fincol.

Despite these shortcomings, it is far better for people in prison to use Fincol to try to disinfect injecting equipment as thoroughly as possible, rather than not clean the syringes at all.

A preferable solution: Prison Needle Exchange

What would be far more effective is the provision of sterile injecting equipment, on a strict one-for-one exchange basis, to people in prison who inject drugs.

To reduce the risk of transmission of hep C and other blood borne viruses in prison, a controlled needle exchange system is essential. Needle exchanges exist in prisons overseas, including in Canada.

We note that drugs are illegal both in prison and in the broader community. Regardless, widespread needle and syringe programs (NSPs) are available in the broader community and serve as a highly effective means of preventing the transmission of hep C and other BBVs among people who inject drugs, however they are not available in any prison in Australia.

There is not, therefore, an equivalence of health care provision between people in prison and people in the broader community.

Prison officers are at greater risk from accidental needle stick injuries, and potential HCV infection, with the current system of uncontrolled needle use, where syringes carry a high value and are difficult to disinfect, than they would be under a tightly controlled needle exchange program.

In the meantime use Fincol to disinfect injection equipment

While this debate around Fincol and prison based needle exchanges continues, it essential that people in prison be provided with the means to disinfect injecting equipment as best they can. Fincol is currently the only available means.

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Can hepatitis C be cured?

Image by Arturo Castellanos | flic.kr/p/9SMdayCan hepatitis C be cured? The simple, and happy, answer is yes!

New drugs, known as Direct Acting Antivirals (or DAAs), are now available in Australia through the Pharmaceutical Benefits Scheme (PBS) and they offer a significant breakthrough in hepatitis C treatment. The previous form of treatment, a combination of interferon and ribavirin, is now history.

These all new hepatitis C DAAs – the brands of which sport tongue twisting names such as Epclusa, Harvoni, Marivet and Zepatir – are highly effective and have significant benefits and improvements compared to the old interferon/ribavirin treatment.

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Being cured of hepatitis C a “huge relief”

Jase BellOver 24,000 people in New South Wales have started treatment for, and been cured of, hepatitis C since 2016. While this is a great achievement for our community, it is estimated that a further 57,000 across the state are yet to seek treatment and cure. That number represents way more people than it would take to fill the Sydney Cricket Ground!

Thanks to groundbreaking medications, elimination of hepatitis C is now an achievable goal, but one which requires the combined efforts of government, the health sector, and community to be fully realised.

During Hepatitis Awareness Week (22–28 July) and with World Hepatitis Day on 28 July, Hepatitis NSW is encouraging all people across the state who are living with hepatitis C, to take advantage of new easy-to-take and highly effective medications.

The medications, which have a cure rate of 95 per cent, can be prescribed by any general practitioner, and cure is usually achieved within 8 or 12 weeks, with minimal or no side-effects. These new oral pill treatments have offered a revolutionary opportunity. It is important that people see their GP to be treated; while hepatitis C initially has almost no symptoms, if left untreated it can ultimately result in significant liver disease.

Jase Bell, a Hepatitis NSW community speaker, said he was unsure how long he had been living with hepatitis C before he was diagnosed 18 months ago. “I might have had it for up to ten years, and I was shocked to be diagnosed because I had no idea at all,” Jase said. “Fortunately, I was able to be treated and cured within a few short months. It was a huge relief, a great weight lifted off my shoulders.”

With so many people cured it is encouraging that progress has been made in reaching the NSW goal of eliminating hepatitis C across the state by 2028, but now is not the time to rest. It is essential that anyone who believes they may be living with hepatitis C, strongly consider commencing treatment, and get themselves cured. It’s equally important for all GPs across NSW to also join the effort if they haven’t already done so.

“I would absolutely recommend the cures to anyone living with hep C,” said Jase. “Just do it. You have nothing to lose and everything to gain.”

More info: 1800 803 990

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DAAs decrease hep C deaths but double GPs needed

Hepatitis C deaths have declined by 20% in the two years since direct-acting antivirals were added to the PBS, infectious diseases physicians say. Professor Greg Dore, from the Kirby Institute, says the decline in deaths among patients with liver disease is remarkable and testament to the high uptake of the drugs.

“Around 10% of GPs have written a script for these new therapies — we’d like to potentially double that.”

www.pharmacynews.com.au/news/remarkable-results-daas-decrease-hep-c-deaths

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