NSW HEPATITIS INFOLINE

Hep C Diagnosis & Stigma: I Was My Own Worst Enemy

Hep C Diagnosis & Stigma: I Was My Own Worst Enemy

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

It is likely that I had hep C for three or four years before I was diagnosed with it at the age of 21. I didn’t know much about the virus then, just that it was something you got from sharing needles and that there was a lot of stigma around it.

I had been drug-free for almost two years when I heard that my ex-partner had tested positive for hep C. This meant, I realised with a knot tightening in the pit of my stomach, that I was very likely positive too. However, I didn’t get tested right away.

The stigma attached to hep C made dealing with potential diagnosis hard to cope with

I had grown up in a conservative family; I was a “good girl from a good family”. My earlier drug use had affected my relationships with my family and friends, and I thought I knew how my family would take the news that I had hep C. In my mind, I believed they would assume I was using drugs again. The stigma attached to the virus – not just in the wider community but also within myself – made dealing with my potential diagnosis quite intimidating and extremely hard to cope with.

Instead of facing the situation head on I started drinking. I pretended nothing was wrong. My drinking got heavier and more out of hand.

Deep down, I knew I had the virus; and I also knew I was probably making myself sicker by drinking as heavily as I was. I now had a serious mental health issue and a whole new dependency to deal with. It was making me twice as sick because of my undiagnosed hep C.

I was so terrified of facing my situation

Part of me knew I had to do something, so I started going to doctors. I was so terrified of facing my situation, and the stigma surrounding it, that every time I got tested, I pretended it wasn’t happening and avoided the results.

In total I had about six different tests from six different doctors… and each time I refused to pick up the results! This went on for maybe six months to a year, and all the while I kept drinking more and more.

Finally, I broke. Maybe it was the various doctors’ surgeries constantly ringing me to come in to get my results. Maybe I was coming to the realisation that I couldn’t live as an alcoholic anymore. I knew I was going to die slowly and painfully if I didn’t face up to the situation.

Starting treatment turned my life around

In 2001, I finally got tested and was diagnosed with hep C.

Because of public and personal stigma around the virus, not only did I delay my treatment, I put unnecessary stress on my liver, and I had estranged my family and friends even further. Plus, I had another dependency to deal with.

I started interferon treatment for hep C in 2002.

Interferon was a tough treatment to complete. The side effects were intense! I was surprised how supportive my family and friends were. They were proud of me for facing up to my situation and admired the strength it took to complete the treatment.

I was my own worst enemy in my journey with hep C

Now, looking back, I realise how much time I wasted and how much stress I put myself through. The virus may have affected my body, but the stigma I had attached to it created mental health issues that took years to heal and caused a dependency that I might have avoided had I sought help straightaway.

The stigma hurt me far more than the virus did. For a while, I had been my own worst enemy. But I’m now 18 years sober, I have a little boy and a happy healthy relationship with my partner and my family. To anyone who thinks they might have hep C, I’d say get tested right away. The treatments for hep C these days are amazing – effective, discreet and easy… don’t let stigma get in the way of getting cured.

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 2 September, 2020

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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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10 Facts about viral hepatitis for World Hepatitis Day!

10 Facts about viral hepatitis for World Hepatitis Day!

This article was written by Dr Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

July 28 is World Hepatitis Day, marking a day where community organisations, clinicians, researchers, and governments raise awareness to the global burden of viral hepatitis. This year’s theme is “finding the missing millions” – in recognition of the many people around the world unaware they are living with hepatitis B and/or hepatitis C.

Did you know the date of World Hepatitis Day is also the birthday of Nobel prize winner Dr Baruch Blumberg? He not only discovered the hepatitis B virus, but also developed a diagnostic test and vaccine for the virus.

Here are ten more facts about hepatitis…

1. There are 5 viruses that predominantly affect the liver…hepatitis A, B, C, D, and E

They are all different viruses and are transmitted through different pathways. Hepatitis A and E are mostly spread through faecal-oral route and are preventable by hand hygiene and careful food preparation. Hepatitis A is more common in Korean communities and is also vaccine preventable. Hepatitis B is spread through blood and body fluids, hepatitis C through blood to blood contact. Hepatitis D only occurs in people infected with hepatitis B and is uncommon in Korean patients.

2. There are over 300 million people in the world that live with viral hepatitis

Less than 20% of the people with the virus are aware that they have the infection. The prevalence rates of hepatitis vary throughout the world, some areas have high rates of hepatitis B of over 10%. Higher rates of hepatitis B are seen in older Koreans born before vaccination programs were available.

3. More than 1.5 million people die each year from viral hepatitis

Many people are unaware of their diagnosis until the very late stages of disease and are often too late to be saved. Causes of death include acute liver failure, but the most common cause of death is liver cancer. Described as a ‘silent killer’, those unaware of their status may only have symptoms when the disease is very advanced and when options of treatment are very limited. It’s important to know your status!

4. Prevention of hepatitis remains central in eliminating viral hepatitis

Vaccines are available for both hepatitis B and for hepatitis A. Hepatitis B vaccine is now a part of Australia’s childhood vaccination schedule, starting at birth. It is safe for people of any age to have, even when pregnant. All people should be vaccinated. Know your status and get vaccinated if you are not protected. Those who are family members or partners of positive patients can access free vaccines through NSW health. Ask your doctor.

5. Hepatitis B and hepatitis C are transmitted through blood

Avoid sharing IV needles/syringes, razor blades and toothbrushes. It is safe to share meals, hug your family and friends. Stigma and discrimination is not acceptable. Talk to your health care provider if you have any concerns.

6. Hepatitis B, C, and D can lead to chronic liver disease, cirrhosis, and liver cancer

Many people can continue to have a healthy and normal life without realising their liver is being damaged. It is essential that, if you are at risk, you see your doctor regularly and get checkups. Taking care of yourself is also very important, in addition to getting vaccinated, avoid excess alcohol and do not smoke, take care not to take medications that can cause liver injury. Focus on a healthy diet, exercise and stay lean.

7. Hepatitis B can be treated

Treatment, for those who require it, is available in the form of an oral tablet. If you are living with hepatitis B, your doctor will assess whether you need treatment based on blood tests, your history and other test results. Even if you do not need treatment, you may need treatment later. Lifelong checkups are needed.

8. Hepatitis C can be cured

People with hepatitis C virus – confirmed with a PCR test – are eligible for treatment in Australia. Tablets are taken for 8 or 12 weeks and the treatment cures more than 95% of cases. Ask your doctor about this!!

9. Beware immune suppression

If you have a medical condition that requires immune suppression, you may be at risk of hepatitis B reactivation (meaning an increase in virus activity in the liver). Know your status and ask your doctor.

10. People with viral hepatitis can be at increased risk of liver cancer

Screening can lead to early detection and curative treatment. Liver cancer is the most common cause of death in patients with hepatitis B. It is asymptomatic and the only way to diagnose it early is by screening. If you have hepatitis B, you may need screening. This is simple, using an ultrasound on a six-monthly basis. It could save your life. High risk groups include older people, those with advanced disease (liver cirrhosis) and a family history of liver cancer. Treatment is available.

Celebrate World Hepatitis Day by spreading awareness about viral hepatitis

You or someone close to you, loved ones can be impacted by hepatitis. Celebrate World Hepatitis Day as a hepatitis community to increase awareness, talk about hepatitis and address the ongoing challenges of increasing prevention, diagnosis and treatment.

You, or someone you know could be one of the “missing millions” … you can play a part in “finding” them. You could save a life – yours, or someone you love.

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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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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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