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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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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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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