NSW HEPATITIS INFOLINE

It was a case of second time lucky for my hep C cure

It was a case of second time lucky for my hep C cure

It Was A Case Of Second Time Lucky For My Hep C CureJames, one of our Community Peer Workers, has written a guest blog post about his experience of living with and being cured of, hepatitis C.

My early life, around Brisbane during the 1970s and 1980s, was difficult. Due to a family breakdown, I began living on and off the streets. Recreational drug and alcohol use became an everyday thing. During the early 1990s, I got an authority for morphine and benzodiazepines to help with the pain and anxiety from spinal injuries. In 2000, my then partner and I had a baby daughter, and we moved to Lismore to gain access to health services and education for ourselves, and to build a better life.

In Lismore, I decided I wanted to try and get off morphine. So, my authority was cancelled, and I was put on methadone maintenance program which I remained on for nearly 15 years. This was a time in my life when I discovered new rock bottoms, and a level of usage that transcended anything that had gone before.

I had resigned myself to live with, and perhaps die from, hepatitis C

A friend who was hep C positive was staying with me and we accidentally mixed up our injecting equipment. At first, I was not interested in getting tested for hep C. I knew the treatment that was available in those days was not suitable for me. Interferon could exasperate depressive conditions, and I didn’t need that in my life.

I had resigned myself to live with, and perhaps die from, hepatitis C; waiting for a better cure that was not even guaranteed. A few years later I was at the local Needle and Syringe Program, and I agreed to be tested for hep C. It came as no surprise to me to be told I was hep C positive.

Hep C related discrimination came from an unlikely source

Very early on I found who I had to disclose to, and who I didn’t have to. Discrimination came from the unlikely source of my family being frightened of dishes and toothbrushes, and so on. Such issues were easily sorted by educating them, and myself, to understand exactly what the risks were.

Just being sick for a long time brings judgment calls from people that don’t understand. Fatigue is seen as laziness, and a slight of character. This is the kind of discrimination I faced, mainly because I am so private. I believe that, with education, there’s no need to have any discrimination around this issue.

I saw my health deteriorate in many ways

Over the next few years I saw my health deteriorate in many ways. However, I wasn’t sure if that was due to the drugs, mental health issues, lifestyle, or all of the above. I believed hep C wasn’t having much effect on most folks living with it, and I was going to wait until new treatments the doctors had started talking about became available.

I had even started to become a stranger to myself

The impact of all of this on my life was quite far-reaching, especially in relationships. I had even started to become a stranger to myself. Some impacts were not at all obvious until after I was eventually cured. Broadly speaking, the symptoms I experienced while living with hep C included:

  • Mood swings and depression;
  • Digestive issues, nausea and poor appetite;
  • Skin problems, eczema, dermatitis; and
  • Lethargy, always tired but hard to rest.

Although I had put most of these down to drug use, and to getting old, after I was cured, I found this was not the case.

My first attempt at hep C treatment was unsuccessful

Around 2016, I got off methadone. I went to a healing centre for 12 weeks to get clean and then walked straight into hep C treatment.

My experience of getting access to treatment through the rehab was made easier by the support of case workers and doctors. As long as I kept my appointments and looked after myself the staff at the liver clinic kept the ball rolling for me. I was able to drop in most days if I needed to talk about treatment.

My first treatment was Harvoni. I was suitable for treatment but unfortunately it was unsuccessful. Apparently, I was a rare exception – the new treatments were usually very successful and almost side-effect free, but not for me. No side-effects, but no cure either.

As disappointing as it was for the first treatment to be unsuccessful, the liver clinic stayed in contact with me. They ensured I was able to get a second treatment as soon as possible.

I anxiously attempted another hep C treatment

Luckily, within a year a “salvage” treatment – Vosevi – became available. I was one of the first half dozen to receive it, and this time it was a success. I was cured!

With Vosevi there were quite a few side-effects, especially in the last four weeks. These side-effects were very similar to hep C symptoms, intensifying in the last four weeks and taking me about 12 weeks to recover from.

But now I feel better than I have felt in years.

The SVR test results – 12 weeks after finishing treatment – was, I think, the most important news I’ve ever been given. Without the SVR test there was no way of knowing if I was cured or not, so I anxiously waited for the results to then be told it was successful and the virus was gone.

Now I have something to give back

I’m grateful for my opportunity to come through this and to be able to put my hand up and say I’m there for anyone who is going through the same thing. The most beautiful thing about being gifted such an experience is that I now have something to give back.

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 25 August, 2020

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Hep C Treatment has Changed

Hep C Treatment has Changed Hep C testing and treatment is now super simple, super safe, super manageable and super-effective. Unfortunately, some people aren’t getting treated because they are running on old information about the previous interferon/ribavirin treatments. However, things got better a few years ago with the introduction of direct-acting antivirals (DAAs). Hep C treatment has changed for the better. People can be treated at local health services, and most don’t need to go to the Liver Clinic.

Clearing the Path aims to spread awareness about hep C treatments and cure

These are the positive messages of this year’s hepatitis C campaign, Clearing the Path. The campaign is aimed at not only raising awareness of DAA treatments and cure but dispelling stubborn myths that persist from the days of interferon. DAAs have a very high cure rate – over 95% – with minimal, if any, side-effects for most people. Taken as daily doses of pills, the new treatments take just 8 or 12 weeks.

Thousands of people in NSW have already been treated and cured since March 2016, but many more living with hep C are yet to seek treatment. We conducted research which showed that lack of information or misconceptions were the main reasons people with hep C hadn’t come forward to be treated. The campaign will deliver myth-busting, correct information in a positive, uplifting format and get the conversation about treatment started.

What is hep C and who is at risk?

Hepatitis C is a virus that is transmitted through blood-to-blood contact and can, over time, damage a person’s liver – leading to fibrosis, liver cirrhosis, and even liver cancer.

Someone could be at risk of hep C if they have ever had blood-to-blood contact. Sharing injecting equipment or getting home tattoos or home piercings are the most common means of transmission.

Many people do not know they are living with hep C

Tens of thousands of people in NSW are living with hep C, but many do not know they have the virus. Some people do not have symptoms. Having a blood test is the only way to know if someone is living with the virus.

Being cured of hep C can improve quality of life. Many people who have finished their course of treatment report feeling greater levels of energy and alertness.

There has never been a better time to get tested and start hep C treatment

NSW Hepatitis Awareness Week started on Monday 27 July, with World Hepatitis Day on Tuesday 28 July. During that week and into August, Hepatitis NSW with NUAA will be rolling out the bright, eye-catching artwork – wall posters, street pole posters, pull up banners, and pubs and clubs washroom advertising – throughout New South Wales. The messaging focuses on the availability and effectiveness of new hep C treatments.

There has never been a better time to start hep C treatment and be cured of the virus. Treatment has changed for the better, and that’s no fake news.

For more information on this campaign, please email: Vanessavpollett@hep.org.au
To find out more on hep C and cure, call the Hepatitis Infoline on 1800 803 990 or visit the campaign website>>> hepc.org.au

Published 3 August, 2020

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Challenges… I’ve had more than a few!

Challenges… I’ve had more than a fewJarra*, one of our Community Peer Workers, has written a guest blog post about her experience of living with and being cured of, hepatitis C.
(*Not her real name.)

During my late teens, everyone I knew was learning they were hep C positive. It felt inevitable to me that I would also get the virus and, at the age of 19, I was diagnosed with it too. At first I didn’t notice it affecting me, and I wasn’t too worried about long term effects either; those were at least twenty years away… a lifetime.
A few years later I watched my partner go through interferon treatment. This was intense and put me off the idea of hep C treatment for myself.

I didn’t want to live but I didn’t want to die either

By the time new, effective treatments were available my life was a mess. I had no permanent housing, I was in an abusive relationship, and Family Services were breathing down my neck. My daughter was removed from me and I wasn’t allowed to call or see her.

I had only just been coping at that point, and this experience sent me into a tornado of anger and hate. Using whatever drugs I could get my hands on, I spiralled down fast. I didn’t want to live but I didn’t want to die either.

I felt vulnerable and trapped

After my months-long pity-party, I decided something had to change or I would end up dead. The thought of my daughter attending my funeral was my motivation to book into rehab. There, I got a full health check and realised I had been in denial about my hep C. I needed to get treatment. It was somewhere to start on my road to health.

At this point in my life, turning up to an appointment was a challenge. But I had made a commitment to myself – if I couldn’t keep an appointment, how could I look after my daughter again? This thought got me over the line, and onto the bus and to the liver clinic on time.

Everyone at the hospital was really nice, but when the nurse took my health history she asked if I was still using and, if so, what drugs. These questions made me anxious. I was being drug tested by Family Services and going through court. Those agencies were accessing my health records and monitoring any prescriptions I placed. I felt vulnerable and trapped. I didn’t want to lie in case it was relevant to the treatment, but I wasn’t going to give out info that could be used against me. So, I lied, which made me even more anxious.

The reality of dying from this disease hit me hard

The fibroscan of my liver was simple and stress-free. But then I was told I had cirrhosis. This hit me harder than the hep C diagnosis had. Suddenly, dying from this disease seemed like a possibility.

The hospital had difficulty finding veins to take my blood, and the flow of blood from the veins they could get was small. Blood samples they collected weren’t useable. More frustration and anxiety!

The doctors and nurses were kind and respectful, but it was definitely impressed on me how much this was costing, and not to lose the prescription. It would be, I was told, a headache of paperwork and red tape to replace. This made me determined to prove that I wasn’t a stereotype, that I could be trusted to complete my treatment.

As I have PTSD, I had to work hard at remembering to take my tablets. I put a system in place to help. While I had a few side-effects, it was difficult to tell if this was due to the treatment or because of everything else I was doing and taking.

Before long, I had finished my three months of treatment and felt proud of myself. I had started and finished something which, during the chaos of my life at the time, was an achievement.

However, I never went back after 12 weeks for the final test.

I didn’t understand why my hep C didn’t clear

Some months later, I returned to rehab and was told I still had the virus. I was gutted and shocked. I didn’t understand why I hadn’t cleared the hep C. I had been so careful and yet “I had blown it”. I assumed I had been reinfected by my partner. I felt embarrassed, and I was angry with him.

A year or so passed before I shared this news with a friend who had also been through hep C treatment. Her advice and encouragement got me back to the liver clinic. Since I believed I had caught it from my partner, I took him along too.

Turns out I still had my original genotype, which was different from my partner’s. Both my self-shame and my anger towards him had been misguided. They told me the reason I hadn’t cleared was unknown.
The doctor said I could be treated again but that better blood collection was needed. Instead of the anxious painful experience from before, I was put in contact with “The Best Liver Nurse on the Planet”. She used an ultrasound machine to find decent veins and, first try, was able to get eight good vials. What a massive relief!

The fibroscan revealed that my liver cirrhosis score had improved, so the first treatment hadn’t been a waste of time. And, instead of telling lies to uncomfortable questions, I asked the reason for the question. The doctor said that knowing if I was using drugs had no relevance to treatment, it was about concern for me. I thanked her for her support, but said I wasn’t comfortable talking about anything illegal I might be doing and reassured her I’d take every precaution.

New hep C treatment turned my life around

The doctor put me on a different treatment drug. I experienced no side-effects this time and quickly started to feel better. I finished the course easy-peasy.

Issues around my housing, Family Services, and, especially, my daughter all remain in limbo. But despite all that, and the stress it brought, I was able to complete treatment… twice! Although I haven’t yet had a definite “you’re cured” test result, I’m booked in for blood tests in August which will hopefully be definitive and give me the good news.

Doing something productive for myself had a knock-on effect. It built self-esteem, which enabled me to have the bravery and self-love to start making changes in my life. Challenges remain in my life but, fingers crossed, hep C will no longer be one of them.

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.

 

For help call Lifeline 13 11 14, Beyond Blue 1300 22 4636 or Kids Helpline 1800 55 1800

 

Published 30 July, 2020

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Media Release | Reducing the burden of hepatitis on World Hepatitis Day

Reducing the burden of hepatitis on World Hepatitis DayTens of thousands of people in NSW are living with viral hepatitis. 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 sadly, 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, many thousands experience barriers to accessing healthcare, treatment, or cure.

What is the significance of World Hepatitis Day?

World Hepatitis Day is an important event to highlight these issues and drive better outcomes. NSW Hepatitis Awareness Week starts on Monday 27 July, with World Hepatitis Day on Tuesday 28 July. A key activity for this year is the roll out of the bright, eye-catching artwork – wall posters, street pole posters, pull up banners, and pubs and clubs washroom advertising – throughout New South Wales. The messaging focuses on the availability and effectiveness of new hep C treatments.

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. Hep B 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.

For hep C, all Australians over the age of 12 have access to effective and affordable direct acting antiviral (DAA) cures. Hep C treatment is available through local doctors. Community organisations and government agencies work to raise awareness of the cure and help people into and through treatment.

70,000 Australians have been cured of hepatitis C since 2016

Being cured of hep C can improve quality of life. Many people who have finished their course of treatment report feeling greater levels of energy and alertness.

Since the DAAs became available in Australia in 2016, more than 70,000 Australians have been cured of hepatitis C.

Hepatitis NSW CEO, Mr Steven Drew said the medications have a cure rate of 95 per cent. “They can be prescribed by any general practitioner, as well as authorised nurse practitioners. Cure is usually achieved within 8 or 12 weeks, with minimal or no side-effects.”

“These oral pill treatments have offered a revolutionary opportunity,” said Mr Drew. “It is important that people see their health professional to be treated and get their best life back. While hepatitis C initially has almost no symptoms, if left untreated it can ultimately result in significant liver disease.”

We have the rare opportunity to eliminate a chronic disease

Mr Drew said testing for hepatitis C was simple and easy as getting your GP to do a blood test.

“We’ve all led varied and adventurous lives filled with new experiences. It may be that some, or one, of those experiences exposed us to the chance of hepatitis C transmission. The only way to know for sure is to see your GP to have a blood test for hep C.”

“Should you learn you do have hep C, please seriously consider commencing treatment and get cured,” said Mr Drew.

“It is not often we get the chance to eliminate a chronic disease, but we have that opportunity now with hepatitis C,” said Mr Drew. “I encourage anyone who hasn’t yet sought out this medication to explore their treatment options,” adding that Hepatitis NSW could provide information and support to anyone living with, or affected by hepatitis including family and friends of people living with hepatitis C.

“I encourage people to contact the Hepatitis NSW Infoline on 1800 803 990 for more information about the treatment options available or hepatitis generally. You can also contact us using our online chat function on our website hep.org.au.”

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The path to hep C cure was difficult, but I made it

The Path To Hep C Cure Was Difficult But I Made ItPaul, one of our Community Peer Workers, has written a guest blog post about his experience of living with and being cured of, hepatitis C.

My experience with hep C started in the years when everything was still done the “old way”. Ultimately, I survived hep C because of the new direct-acting antivirals, but it was a long time coming and I had become very sick before I got the chance to be cured.

I wasn’t aware of the profound impact hep C would have on my life

In the late 1980s, although I was still using at the time, I was dining with a group of recovering injecting drug users. Someone told me that I would “eventually die from hep C”. I hadn’t even been diagnosed at that stage, so this was news to me!

Then, going to rehab in 1994, I was indeed diagnosed with hep C. I had probably contracted it in the late 1970s, when the virus was all but unheard of.

I had no idea just how profound an effect hep C would have on my life. Initially, for many years, I lived normally. But the liver is a fundamental organ – it performs hundreds of functions; it determines our energy and our spirit – and hepatitis C attacks the liver. Over the following decades, I ticked every box of things that could go wrong with my liver.

My energy started to fade. I had ascites. Due to hepatic hypertension and massive blood loss, I went into a coma. And the tests! I will always remember the day I had my liver biopsy.

Hep C lead me to a dark and lonely place

My cognitive ability was leaving me, and I was no longer able to work. All of this put a huge tension on my relationship, which eventually ended. I hadn’t wanted my partner to watch me die.

As my liver became sicker, I was placed on the list for a transplant. Even so, I began to have suicidal ideation, believing that I was going to die anyway. That was a terribly dark and lonely place to be in. I was fearful that if I told my medical team about these thoughts, they would take me off the transplant list.

One of the evaluations in the lead up to my transplant was for mental health, and I was told I should have a “positive attitude”. Thankfully, I decided to talk about what was going on for me. I was referred to a hospital psychologist who specialised in the experiences of folk waiting for a transplant.

As it turned out, my dire thoughts were not unique!

At one stage, the medical team offered me interferon treatment. Had I still been using drugs I doubt that I would have been given treatment, and I knew folk who had been refused for that reason.

Unfortunately, during interferon treatment, my blood platelets plummeted to a critical low level and I was taken off it. Although this was discouraging, the new anti-viral cocktails were on the horizon and my team recommended me for the trial. The word on them was much more positive than interferon – a high success rate with few side effects, how good is that? Incredibly, the drug company refused, saying that I was too big of a risk. That was a huge blow.

The new treatments turned my life and health around and I am now well

Eventually, the new treatments became available in Australia through the PBS on March 1, 2016. I was put on the treatment and – so much for being “a risk” – I was cured of the virus a month before my scheduled transplant. A huge blessing.

Despite being cured of hep C, by this time my liver had gone to stage 4 cirrhosis and I was growing small cancers. While I was now at the top of the list for transplant, the journey to transplant required me to be healthy enough to survive what is dramatic surgery. Being cured of hep C helped me with this.

Although it was a massive challenge, I made it through my liver transplant, and I turned my life and health around. My energy was better after clearing hep C. It might have been an awful experience but, three years later, I am now well.

Throughout all of this, I have been totally open about my condition, prepared to take on any stigma and believing that others might benefit from my openness.

To anyone who may have shared needles, or maybe had a blood transfusion before the virus was identified, I say – go get tested. If you need to be treated and cured it’s an easy process these days, no painful biopsy involved!

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 13 July, 2020

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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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