H TO GET
E CA W N R SEE OUR FUTURE
STORIES OF COURAGE, RESILIENCE AND HOPE FOR A FUTURE FREE FROM HEPATITIS C
Acknowledgements Hepatitis Australia would like to thank those Australians who appear in this book. We acknowledge the strength they have shown in sharing their personal journeys and experiences with hepatitis C. Their candid insights into life with hepatitis C provide a rare glimpse into a condition that directly affects more than 230,000 Australians. We would also like to thank the state and territory hepatitis organisations for the information, education and support services they provide to people living with hepatitis C and for their efforts in helping prepare this book. Our grateful thanks also go to AbbVie Australia for the provision of a grant to support the development of this book. We trust this book will assist all Australians to understand the significant impact that hepatitis C has on those living with the virus and also their friends, family members and the community at-large. These stories highlight that a desire to beat hepatitis C is a central theme and with understanding and support anything is possible. It is our belief that if we all work together, we can make a real difference to the health and well-being of people living with hepatitis C in Australia and create a much brighter future for everyone.
3 TOGETHER WE CAN: SEE OUR FUTURE
Contents Foreword by Hepatitis Australia Foreword by Senator Dean Smith and Senator Lisa Singh Fourth time lucky - ROSS WILLIAMS It is liberating not having to hide anymore - KERRIE JORDAN My sons ask if the bug in my tummy has gone yet - IAN PENGELLY I don’t want my son to see me struggle - HANNAH LEANE-FISI Words can’t describe how good it feels to be cured - PAUL FAIRLEY I never knew how difficult seeking a cure would be - SIMON DALY I had infected the person I loved the most - DAVID I felt like I had been hit by a tranquiliser - NATARSHA TRYL I wanted to know, “Why me?” - FUNGISAI SIGGINS My children have never experienced a hepatitis-free life - AMANDA MCCARTHY Early treatment is the answer - DAVID RUXTON I consider myself so lucky - EILEEN WOOD I am forever grateful - FRANCIS MILLS We will fight this with everything we have - JO AND LES SLOAN I won’t let it control my life - MALCOLM COCKRUM I felt like a toxic time-bomb - FIONA CLARKE The shackles had been broken - SHANE YULE I’m not a quitter; I will be cured - JAYE HINCHLIFFE A clinical trial saved my life - JENNIFER CRITCHLOW My doctor hugged me with hearty congratulations - MIKOL FURNEAUX How many more lonely epitaphs? - PAUL GIFFEN I was fearful of the decline in my health - AMANDA KENYON I consider myself one of the lucky ones - NEIL ALLINSON I refuse to be discriminated against - JULIE CASSIDY I live in hope for new treatments - MARIAN DONNELLY There is always a chance for a cure - SALLY This was end-stage liver disease, I was dying - JOHN IVKOVITCH The waiting and uncertainty is killing me slowly - TAMMY WATERS I spent 30 years believing there was no cure - FRANCIS CONNOLLY Publishing details
04 05 06 07 08 10 11 12 14 16 18 20 21 22 23 24 26 27 28 30 31 32 34 36 37 38 40 41 42 44 45 46
4 TOGETHER WE CAN: SEE OUR FUTURE
Foreword by Hepatitis Australia There is a deep stigma surrounding hepatitis C, and this factor alongside its ability to go undetected or asymptomatic for many years has conspired to keep hepatitis C in the shadows, and rarely discussed. It was therefore both unexpected and incredibly refreshing to be almost overwhelmed with people willing to share their personal journey with hepatitis C for this book. A greater understanding of hepatitis C is sorely needed in our society and it is our hope that the stories in this book will help to facilitate a deeper insight into the impact that the hepatitis C virus can have on individuals, families, the health system and the economy as a whole. There are more than 230,000 Australians living with chronic hepatitis C, many of whom have lived with the virus for decades. Interferon-based therapies have for many years been the only treatment option, the side-effects of which have been a major barrier to treatment uptake. The number of Australians progressing to serious liver disease and liver cancer is growing each year and tragically, experts have calculated that more than 630 Australians will lose their lives to hepatitis C this year alone. Urgent intervention is needed. Against this background and after years of waiting, new, highly effective and much more tolerable hepatitis C anti-viral therapies are now within reach. These new hepatitis C medicines are gamechangers; they are a modern day medical miracle offering a cure to the vast majority of people with chronic hepatitis C following just a few months of treatment. As a nation it is imperative that we make the most of this extraordinary opportunity and invest in turning hepatitis C into a rare disease. This book, Together We Can: See Our Future, serves to remind the community why that investment is necessary. I commend these individual stories of courage and resilience to you and hope that they inspire you to work together with us to bring about a much brighter future for all Australians who are affected by hepatitis C.
HELEN TYRRELL CEO HEPATITIS AUSTRALIA
5 TOGETHER WE CAN: SEE OUR FUTURE
Foreword by Senator Dean Smith and Senator Lisa Singh It remains an uncomfortable reality even today that many of the 230,000 Australians living with chronic hepatitis C unfairly face stigma, discrimination and judgement. As such, the Australians you are about to meet must be applauded and recognised for their courage and resilience in telling their story. What they have to say is important and cannot be ignored or trivialised. These Australians are representative of our diverse community - yet are usually hidden within it. They have chosen to share their personal experiences to illustrate the sometimes brutal realities of living with and seeking a life free from hepatitis C. As Parliamentarians we appreciate the value and importance of the insights gained through reading this book. So often we are inundated with faceless statistics and forward projections, but rarely are we presented with such compelling real-life stories. The Parliamentary Liaison Group for HIV / AIDS, Blood Borne Viruses and Sexually Transmitted Infections exists in part to illuminate the obvious and more subtle manner in which stigma and discrimination impacts the day to day lives of those living with these infections. We see Together We Can: See Our Future as a vital source of information and a means to better educate our community. It will help us all begin to dissolve the stigma and discrimination that can accompany hepatitis C. Thank you to those who contributed to this publication. By standing up to stigma and discrimination and shining a light on hepatitis C you are helping to bring more and more Australians out of the dark.
SENATOR DEAN SMITH CHAIR
Parliamentary Liaison Group for HIV / AIDS, Blood Borne Viruses and Sexually Transmitted Infections
SENATOR LISA SINGH DEPUTY CHAIR
6 TOGETHER WE CAN SEE OUR FUTURE
Fourth time lucky ROSS WILLIAMS AGED 65 WILLIAMSTOWN VICTORIA
My hepatitis C journey is best described as an excruciating ride that I didn’t choose and went for far too long. I’m convinced that without the support of my family and friends, donors, doctors and nurses, I would not have survived. I suffered through two liver transplants and four rounds of therapy before I finally found a cure. After nearly 40 years of living with hepatitis C, I can say it has been absolutely and wholeheartedly worth it to have been successfully treated. At its worst, fluid was being drained from my abdomen every week, I was having delusions and was mentally unstable – I was dying. Doctors told me that my body was unlikely to be able to handle another round of interferon therapy, so they tried to hold off until interferonfree treatment became available. My liver-health progressively worsened during 2014 and it became too dangerous to wait any longer. My last hope was a combination of pegylated interferon, ribavirin and boceprevir that gave me a decent chance of survival. It was a coin toss and I went for it. I began a 48-week treatment that ultimately cleared me of all signs of the virus and left me officially cured. It was my fourth time lucky. The toll hepatitis C and the treatments took on my body meant that I had to retire from work. I am now an active volunteer with Hepatitis Victoria, where I try to help others avoid having an experience like my own. For the 40 years I lived with hepatitis C, it did great damage to my life. I hope that my experience will help ensure that nobody else has to go through that experience.
In January I spoke at the House of Representatives Standing Committee on Health Inquiry into Hepatitis C, sharing my experience. It is so important to spread the right messages about living with the disease and improve the way in which the virus is treated and managed. I will fight to make new treatments available – treatments that I wish were available when I needed them. I have been so lucky to have had access to the outstanding medical services in Victoria. Without our excellent public health system, I would surely be dead.
When someone you love has aggressive hepatitis C, it’s like living under the sword of Damocles – it’s difficult not to let anxiety and stress run your life. The change in Dad since treatment has been hard to believe. He has energy again, he’s healthy and happy and so are we, his family. Alice, Ross’ daughter
7 TOGETHER WE CAN: SEE OUR FUTURE
It is liberating not having to hide anymore My experience with hepatitis C has been a horror story. From the moment I was diagnosed in 1992 there was a lot of confusion. At first, my doctor told me that I did not have the virus. Not too long after, he told me that I was actually positive for hepatitis C and that there was not much I could do in terms of getting rid of it. In hindsight, I now know he hadn’t even done the right tests. I was acutely aware of the stigma surrounding hepatitis C from the beginning. Working full-time and studying at university, I didn’t want this stigma attached to me. I didn’t want anybody to know what was inside me or what I had previously done to contract the virus. I didn’t even tell my best friends; I had internalised the stigma so deeply. I was ready to rid my body of the virus but I was consistently told by GPs that treatment was simply too punishing to go through while I was relatively healthy. It was at this point that I got fed up with waiting and I sought treatment in 2006 from a private gastroenterologist. He was the first person to listen to me, recognising that I was in charge of my own health and was ready for treatment. I went on 48 weeks of pegylated interferon and ribavirin treatment. Even though it could not be promised that I would clear the virus and that the treatment could be pretty hard going, I was prepared to take the risk. Because of the stigma, I felt like I couldn’t share what I was going through with anyone. It was a real struggle for me trying to hold down a full-time job without any support. One of the hardest parts was getting up and going to work every day. I had a well-paying, enjoyable job and was progressing well in my life. I didn’t want to have to give up something I had worked so hard to achieve.
Treatment was an incredibly difficult and gruelling experience with side-effects that took me out of work for a week at a time on a number of occasions. I did everything I possibly could to maximise my chance of successful treatment. In mid-2007, finally, the awesome news came that I had cleared the virus. A few years after I was cured, the realisation suddenly hit me that the shameful stigma I had internalised was ridiculous. What was I ashamed of? The only person my decisions ever affected was me. I am now out and proud about my past; it is liberating not having to hide anymore. Being open about my personal journey allows me to advocate for the communities of people with a history of injecting, and people living with, or at risk of, hepatitis C. I do think about the many thousands of Australians who are still living with hepatitis C. I would love to see interferon-free treatments more readily available in Australia. I know firsthand how hard it is to continue a normal life with the side-effects, stress and uncertainty current treatments bring and the stigma associated with having the virus.
Going on treatment meant a lot to Mum. She had been feeling tired for so long. Getting treatment meant that she got her life back and I got my Mum back. She has beaten a virus that could have killed her.
KERRIE JORDAN AGED 50 CLAREMONT TASMANIA
8 TOGETHER WE CAN: SEE OUR FUTURE
My sons ask if the bug in my tummy has gone yet IAN PENGELLY AGED 44 AYR QUEENSLAND
I was born with a form of haemophilia known as Von Willebrand disease which means my blood won’t clot. As a kid, I spent a fair bit of time in hospital receiving treatment with a blood-clotting protein called ‘Factor 8’. The problem with Factor 8 is that it used to be produced using donated blood plasma and in those days, donated blood wasn’t screened for viruses like HIV or hepatitis C. In 1986, I had to undergo an operation for a perforated ear drum. When I awoke from the anaesthesia I could hear my parents talking about the possibility that I may have contracted HIV from being treated with Factor 8. The good news was that I didn’t have HIV, but another virus was now lurking inside. In the 20 years that followed my operation I became increasingly exhausted and fatigued. By 2005, I couldn’t put up with it any longer and went to the doctor, when a blood test revealed I had hepatitis C. It was a condition I knew nothing about; I had unknowingly been living with the virus for a very long time. The doctor told me that treating hepatitis C was very challenging and warned that if I wanted to start a family I should put off therapy because it could cause birth deformities. Needless to say, I waited, and in 2009, a few months after our second child was born, I commenced anti-viral treatment. From the moment I received the first interferon injection, I was suffering. At four weeks, tests showed that the virus was not responding to treatment and at 14 weeks, the side-effects were rampant. There was still no change in my viral load.
My first attempt at treatment had failed. Fortunately, the side-effects subsided once treatment stopped, all except for the anxiety. I just couldn’t shake this feeling of worry and being unable to relax. The doctors advised that I shouldn’t attempt treatment again until new, more effective anti-viral medicine became available. However, ultrasound scans revealed the impact hepatitis C had on my liver. It was getting bad and I needed a new treatment option as soon as possible. That treatment came with the name telaprevir and was used alongside interferon and ribavirin for 48 weeks to improve my chance of being cured. These are potent medicines and they come with heavy side-effects. I experienced rashes, sore joints, massive headaches, lethargy, tiredness and dizzy spells. The worst of the side-effects really affected my relationships. A few days after each interferon injection, I would become uncharacteristically moody and cranky to the point where I would explode and yell at my wife and kids for absolutely no reason. I would have to remove myself from their lives for a whole day just to spare them the onslaught. Over time, the side-effects became a part of my life and I learnt to take it day-by-day – I even managed to keep running my business. As I approached the end of the treatment period, I was relieved to be told that the virus was undetectable and a cure was likely. Each subsequent week after treatment, it felt as if the dark clouds hanging over me lifted a little higher and drift a little further away.
9 TOGETHER WE CAN SEE OUR FUTURE
It has now been three months since I completed treatment and we are waiting to see if my blood tests remain negative. If I continue to show a negative viral load after six months, I will be cured. I just have to be patient, as hard as that is. Since discovering I had hepatitis C my life has been filled with ups and downs. At times I can’t help but think, “Why me?” I contracted hepatitis C through essential medical treatment and it has taken a massive toll – both physically and mentally. I have been fortunate enough to be surrounded by a supportive family, beautiful wife and two
wonderful little boys. They have kept me laughing, even during the darkest times and that made a massive difference to the way I lived with the virus and coped with treatment. My sons keep asking me if the bug in my tummy has gone yet. Their concern and curiosity never fails to put a smile on my face. To get through the hard times you need to be mentally strong and in a good place in every aspect of your life. That is what has worked for me and I could not have done it without the amazing people in my life. Fingers crossed!
My nephew, Ian Pengelly, lived with the symptoms of hepatitis for years without knowing that a blood product used years previously to help his blood to clot, had infected him with hepatitis C. When diagnosed, he was advised to start (and finish) having a family before he commenced what was then the only treatment available. The 48-week course was hell for Ian and for a few days after each treatment, difficult for his wonderful wife and two fantastic young boys. As a successful small businessman running his own quality trade services and products business, this treatment made it even more difficult for him to keep up with his very full order book. The fact that he persevered with this difficult treatment is a credit to his courage and determination and also to the support of his wife and family. The alternative of course wasn’t a real option! I am delighted that the Federal Government will soon consider putting new interferon-free treatment on the PBS for what will be an easier, shorter and more effective treatment. It will be gratifying to know that others won’t have to suffer so many side-effects of treatment. For Ian, the ongoing wonders and improvements of science and research have given him his life back. Indeed, his family, friends, supporters and also his community are all very grateful.
Senator Ian Macdonald, Ian’s uncle
10 TOGETHER WE CAN: SEE OUR FUTURE
I don’t want my son to see me struggle HANNAH LEANE-FISI AGED 26 SOUTH PLYMPTON SOUTH AUSTRALIA
Being diagnosed with hepatitis C as a teenager was really tough. At 17 years old, I was pushed by my doctor and specialist to undergo treatment while I was still in my last year of high school. They gave me endless tests and pushed me when I wasn’t ready – it made me feel like a guinea pig. Ever since then, I have been really apprehensive about starting treatment. It’s not like I’m uneducated on the subject though; my mum works in women’s health and I’ve always been aware of hepatitis C, its impact on the body and the available treatment options. I have seen how bad treatment side-effects can be; I have seen a family friend go through treatment unsuccessfully and it was horrible to witness. I know where to get help, I just don’t know if I can do it yet. In the future, I do plan on going through therapy. I am especially hesitant now because I want to wait until my son, who is three years old, starts going to school. I know that the first five years of his life have the most impact on his development and I want him to get the best start possible. I want to be the best mother I can be and I don’t want my son to see me struggle through the treatment. I am holding out for new treatments that won’t make me sick and force me to take time out. If this option was available to me now, I would go for it in a heartbeat. For now, I dedicate my time to working with Hepatitis South Australia, visiting schools, prisons and hospitals to share my personal story to those with hepatitis C or at risk of getting it. I try to give my insight on living with hepatitis C and also advice on how to manage life with the virus. It feels amazing being able to help those who need it most.
Through these experiences, I have heard some horror stories from amazing people who have been discriminated against because of their hepatitis C. I consider myself really lucky not to have been subjected to such harmful and unnecessary abuse and I do my best to spread a positive message. I look forward to the day when I can take a medicine that clears the virus without hellish side-effects.
For now, I dedicate my time to working with Hepatitis South Australia, visiting schools, prisons and hospitals to share my personal story to those with hepatitis C or at risk of getting it. Hannah
11 TOGETHER WE CAN: SEE OUR FUTURE
Words can’t describe how good it feels to be cured I had just turned 21 when I contracted hepatitis C. I didn’t know for sure that I had the virus, but I could feel the difference in my body. I didn’t think it was that big of a deal and treatment wasn’t even a consideration. Once I was formally diagnosed though, the doctors and nurses convinced me to go through therapy and seek a cure. The treatment wasn’t too bad. Don’t get me wrong, I was sick for the first 12 weeks, but from what I hear I think it was easier on me than it is for most people. What I experienced was nothing compared to how some others describe it. During treatment, I tried to do everything I could to stay healthy. I went for long walks and got plenty of sleep, I ate healthily, got lots of rest and rode my bike regularly. I was having weekly blood tests and reviews to keep up to date with my progress and I was surprised by how well it went. And yes, it was a great day when the doctors told me I had been cured. Being cured was a huge relief and I owe it to the doctors and nurses who convinced me to get treated. I live a healthy lifestyle now to keep my liver in check and make sure my body stays as strong as possible. Words can’t describe how good it feels to be cured. Being cured has made a massive difference to my life. My hepatitis C wasn’t too much of a burden on me before I decided to get treated, but I am glad I have cleared the virus. If I had one piece of advice to give to other people thinking about treatment, it would be to just do it. If you take it one day at a time and do what the doctors tell you, it may change your life.
I am rapt that Paul has been able to free himself from hepatitis C. A cure means that a huge weight has been lifted from him and that the days seem so much brighter. It is so good to see him so happy. Paul’s friend
PAUL FAIRLEY AGED 49 BROKEN HILL NEW SOUTH WALES
12 TOGETHER WE CAN: SEE OUR FUTURE
I never knew how difficult seeking a cure would be SIMON DALY, AGED 51 CURTIN AUSTRALIAN CAPITAL TERRITORY
My name is Simon and I’m a proud Canberran. I live an active lifestyle through cycling and surfing, spending much of my time helping strengthen the community. I’ve had my own business in string instrument repair since 1995. Being a luthier is a delicate and detailed craft and I’m proud of the work I do. For 20 years, living with hepatitis C was effortless and had almost no noticeable effect. Living with the virus didn’t bother me at all because it felt as if it wasn’t even there. The thing about hepatitis C though, is that it gets worse the longer you have it. A decade later, I could really feel the virus taking over my body. My viral load was becoming alarmingly high and I had reached the point where I needed to address the issue. I never knew how difficult seeking a cure would be. Knowing I needed a cure, I underwent six months of treatment on a medical trial with a combination of interferon and ribavirin. The side-effects of treatment were immediate and were such that I could only just last for those 24 excruciating weeks. I had a job at the time and even though my colleagues were very accommodating and understanding, work was extremely difficult. Knowing I was unwell, they cut me some slack and allowed me to take sick days without a worry. During the later stage of treatment, I had a virological response that suggested the treatment was working but it wasn’t sustained. When I got tested for the virus three months later, it was back. My disappointment at the failed treatment was tremendous.
My body is ageing and treatment is becoming more and more necessary. I know that I need a cure and I will soon start on another combination of antiviral medication. I am trying to be better prepared for it this time as I know how bad the side-effects can get. I had hair loss, mouth ulcers, anaemia, poor vision, receding gums and general lethargy. However, depression was one of the most debilitating side-effects so I now have my anti-depressants at the ready. I’m ready for round two. I am deeply worried about what treatment will do to me, both physically and mentally. I know people who have never been mentally the same after treatment and others who have recently died from liver cancer due to hepatitis C. I don’t want to be amongst that group, I know I need to address it now. A cure would mean a whole lot less stress in my life. I’ve always have to be careful around my wife and children, knowing that my blood is a dangerous thing. There is always a nagging feeling in the back of my mind whenever I feel tired or low, asking if it’s the hepatitis C getting worse – I know it is. The stress on my family is tough; a cure would mean they won’t have to worry about their dad having a chronic illness. In a perverse way, I am looking forward to getting treated again – it’s a necessary evil. It’s brutal, but the side-effects are better than developing liver cancer. I have a long journey ahead of me but I am determined to beat this terrible virus.
13 TOGETHER WE CAN: SEE OUR FUTURE
The worst thing about this disease is how it affects those living with it and their families, decades on from when it was contracted. If Dad could get rid of his hepatitis C, I know it would be a huge weight off all of our shoulders. I wouldn’t fret that my Mum, who has been with my Dad for more than 30 years, would have to live her twilight years without her life partner and best friend. I wouldn’t worry anymore that my future children would have to miss out on the amazing grandfather I know Dad will be. The community wouldn’t lose such a passionate, active member long before his time. Dad could enrich more years in my life with his wisdom and presence. There are so many families like ours – loving, successful, community focused; all silent sufferers of the daily fear and worry that comes with living with a loved one with hepatitis C; living with the consequences of actions that ceased to exist decades ago. Jemima, Simon’s daughter
Update: Simon did commence a new round of treatment, however was forced to discontinue therapy due to serious side-effects. He plans to revisit treatment in the future when more tolerable therapies are available.
14 TOGETHER WE CAN: SEE OUR FUTURE
I had infected the person I loved the most DAVID SYDNEY
For the vast majority of people, hepatitis C is not transmitted through sexual contact. So when I was diagnosed in 2001, I had no idea what to think. As it turns out, my partner and I were part of an emerging epidemic of sexually transmitted hepatitis C affecting HIV positive gay men in major cities. We had no idea we were at risk because there was no information about transmission through sexual contact. Sadly, that’s still the case for the hundreds of men like us who continue to be infected because they don’t understand the risk. I am always conscious of my health because I have HIV, so I went to my GP to get tested to put my mind at ease. I was initially told I was negative for hepatitis C but I knew there was something wrong, so I sought a second opinion. My HIV doctor subsequently diagnosed me with hepatitis C. My first reaction was to be really angry that there had been no health campaign warning me that I might be at risk. I wasn’t frightened by it because I had a high level of health literacy but I was determined to get rid of it. I read all of the horror stories about the side-effects of treatment and the low success rate, but I just didn’t think that would apply to me. My experience with HIV treatment had been tricky but manageable. Medication had brought my HIV under control and I was getting on with my career and my life. I thought it would be the same for hepatitis C treatment, but I couldn’t have been more wrong. In 2006, I started 48 weeks of interferon and ribavirin therapy. At first it was tolerable and the virus quickly became undetectable in my system.
As the weeks went on, the range and intensity of side-effects mounted up. I was functioning at a very low level and eventually became anaemic. I remember shivering uncontrollably when I was cold and couldn’t warm back up. My skin was so itchy that I could hardly bare my clothes touching me – it felt like the treatment would never end and I would never have my life back again. However, I got through it with the help of anti-depressants and I was clear of the virus at the end of the treatment period. Not long after, when getting the results of my regular blood test, I received news that I had never considered – the virus had come back. I knew it was possible for the virus to return within six months of finishing treatment, but never thought it could happen to me. Things didn’t get better from there either, because somewhere along the way, I had infected my partner of 18 years with hepatitis C. From that moment onwards, we took our first steps down a dark and difficult path in our lives. I had infected the person I loved the most. As my partner said, “At least we don’t need to worry about me getting infected anymore,” which was some small consolation. In any case, we were determined to get rid of the virus. After carefully considering our options and planning for the future, we decided we would both be treated at the same time in 2008, with another 48 weeks of interferon and ribavirin. I really struggled, experiencing the same sideeffects as the first time. Even though I knew what to expect, it wasn’t any easier. To make matters worse we both lost our jobs and were in no position, physically or psychologically to go
15 TOGETHER WE CAN: SEE OUR FUTURE
to job interviews. It was a very tough year but we supported each other through it. We were both encouraged by having undetectable virus throughout the treatment. At the end of treatment we sat in the Doctor’s office waiting for the final results, elated at the thought of the chance to start a new chapter of our lives. My partner had cleared the virus, but for me, the virus was back again – this time just one week after the end of treatment. It was the lowest point in my life – sitting in the doctor’s office, crying like a baby. I couldn’t believe it had happened all over again. There being no other treatment option for me, we resigned ourselves to getting on with our lives, being careful not to pass the virus between us again – which we succeeded at for four years. It seems unbelievable to most who hear my story, but in 2012, despite our very best efforts to avoid it, my partner was re-infected. We had worked so hard and come so far, but we were back to square one. He went through a gruelling 24 weeks of treatment, putting our lives on hold once more to clear the virus. He was successful once again and I couldn’t be happier for him. However, the possibility of me re-infecting him is still an issue for us, until I can be cured. Living with the virus is not easy and I realise it won’t get any easier. I have had such a difficult time undergoing treatment twice already without achieving a cure. There is now so much riding on it, I need a therapy that won’t drag me down for months on end and cause me to put my life on hold. Most of all I need to be sure that treatment will succeed before I put
myself through this hellish ride once more. New, more effective and safer treatments that don’t have terrible side-effects are already available in many other countries around the world; why is Australia so far behind?
A cure for David would be huge. It would give us a chance to finally put the spectre of hepatitis C behind both of us. Hepatitis C has dominated our lives for so many years with either one or both of us dealing with the infection and/ or enduring arduous treatment regimes. It would put an end to the ever-present fear of accidental transmission. David finally being cured would allow the two of us to move on in our lives as a couple.
Andrew, David’s partner
16 TOGETHER WE CAN: SEE OUR FUTURE
I felt like I had been hit by a tranquiliser NATARSHA TRYL AGED 46 STIRLING WESTERN AUSTRALIA
This story is shared in aid of all who wish to commence treatment, for those who support those going through treatment and for anyone who would like to know more about it. Treatment is by no means an easy journey, but definitely a journey well worth it. In 2007 I was diagnosed with hepatitis C genotype 1a, deemed to be one of the most difficult to treat of the genotypes. I couldn’t believe it, I was adamant it was a mistake – I was living in denial. In the back of my mind, I knew I had been really sick for the weeks leading up to the diagnosis but to me this news seemed to come out of nowhere. Being diagnosed with hepatitis C was devastating, almost to the point of self-destruction. This led to a downward spiral; once an outgoing person, I went into hiding. I didn’t want anyone to know and I didn’t want to hurt them. My first chance at treatment was in 2008, and my specialist had an experimental treatment scheduled. However, I just couldn’t go through with it; the side-effects scared the hell out me. I felt like I let my specialist down but I knew that self-preservation was much more important to me at that stage. I was already feeling horrible and I didn’t want to take the chance of making things worse without the guarantee of a cure. The pressure and fear of treatment completely overrode my need for a cure. As my symptoms started getting worse, I knew I had to do something about it. The virus was now my life; it controlled all thoughts and mannerisms. Keeping my job became a daily struggle physically and mentally. I would look at myself in the mirror and be overwhelmed at how much my appearance had changed. There were times
when people would tell me to get more sleep because I looked tired and had bags under my eyes. Little did they know I was sleeping 15 hours a day, every day. I had lost my confidence and social skills – it was such a lonely time in my life. Another opportunity arose to participate in a Telaprevir treatment program; by this stage I would give anything a go. I just had to go for it! As soon as I started treatment I knew I was in for a hellish ride. Even after the first interferon injection, I felt like I had been hit with a tranquiliser, and the side-effects just got worse. I was repulsed at having to stick large needles in my stomach time after time, to the point I was bruised so severely all over my stomach, finding a place to inject became impossible and I had to re-inject on already bruised and tender areas. The side-effects were so powerful that there were many times I almost gave up. I persevered, completed treatment and was cured – the feeling was incredible. Now my body is getting back into shape. I have regained my confidence knowing I am free of the virus and its symptoms. Although the stigma still haunts me, I’ve got the old me back. Instead of my life being a slow road to death, I am experiencing a whole new world. I have so much appreciation for every little thing I come across, from being able to look people in the eyes with confidence, adventure walks in the bush, to swimming at the beach. These simple pleasures are never taken for granted.
17 TOGETHER WE CAN: SEE OUR FUTURE
While I was living with hepatitis C, I wish I had never hidden it from everyone, including my family. When I finally told my mother and close friends, it was the biggest relief. It was such a surprise to know how supportive loved ones can be. Nobody should ever do this by themselves; it is vital that you have a support network who can keep you going through the hard times. It is very easy to feel alone, having to deal with the stigma and psychological effects of the virus and treatment. Having someone there for you and a bit of love in your life really makes the difference. Stay positive and remind yourself of the good things. Treatment is most definitely worth it.
Tarsh shared something extremely difficult with me that made all of the above make sense – she was living with hepatitis C. All I could do was support her, hug her, listen and only imagine what that was like. After a couple of long years involving first the treatment and then the recovery process (insert lots of tears, doubt, sweat, tablets, injections, blood tests, more tears, lots of sleepless nights and fear), today she is a bright, confident and outgoing woman who is living life larger than most. She has a more positive “can do” attitude to everything, refuses to be treated with anything less than she deserves, sets boundaries with others and is not afraid to stand in her truth. I know Tarsh is proud of herself, as I am of her, for having the courage and tenacity to complete a very new treatment and being successful in clearing the virus. She is a true inspiration to others who are just beginning their journey. Patricia, Natarsha’s friend
18 TOGETHER WE CAN: SEE OUR FUTURE
I wanted to know, “Why me?” FUNGISAI SIGGINS AGED 47 KELLYVILLE RIDGE NEW SOUTH WALES
Being free of hepatitis C has given me my life back. I am finally free of the emotional stress that comes from living with the constant fear of death. I have regained my strength and it feels so good to not be tired anymore and free of the brain fog that plagued me for years. My journey began in Africa 47 years ago when I was born in Zimbabwe. Back then, the sharing of razor blades was a cultural norm. I came from a large family where sharing was the order of the day. Uncles, aunts and cousins would forget their toothbrushes or razors and just grab someone else’s from the cupboard. We had no idea about transmissible diseases and the impact they would have on the individual and community. Even in hospitals, nurses would share medical injecting equipment between two, three or more people. I suffered a ruptured appendix and required surgery while I was still in Zimbabwe. Looking back, I realise the syringe that was used to deliver my medication had most likely been used previously on another patient. As the years went by and the political situation started to change in my home country, I migrated to New Zealand and settled in Wellington in 2001. Starting a new life, I had no choice but to work wherever I could. I worked as a handyman, an industrial cleaner, laundry worker, dishwasher and nurse’s aide. I was constantly exhausted, but at the time I put it down to the hard labour.
In 2007, I was working as a health promoter in the area of HIV and AIDS. While the job wasn’t physical I still felt tired. I started forgetting simple things and had serious episodes of brain fog. One day in the middle of the street I couldn’t remember which side I was crossing to, where I was, who I was or where I was going – I knew something was seriously wrong. I did a lot of reading about infections and viruses and one day came across information on the hepatitis C virus. I insisted on getting the test after reading about how the re-use of medical equipment could put people at risk. I was tested and it returned a positive diagnosis. I spent a few weeks running around like a headless chicken trying to get information, which ultimately just confused me more. I didn’t understand the medical terms or what having hepatitis C meant. I went through a lot of emotions. I wanted to know, “Why me?” I was angry that I didn’t know how I was infected with the virus or for how long I had been living with it. I began to fear death and wish I had done more with my life. I then moved to the acceptance phase, “Yes, I have hepatitis C, so what?” This disease happens to affect human beings and I am a human being who happens to be infected. I found help in the form of the internet and the Hepatitis NSW website which made it easier for me to cope with the virus. I started interferon treatment in January 2008, which lasted for 48 weeks. The side-effects were horrible. I had rashes on my skin like a stamp, but I was focused on treatment and getting rid of the virus. I was cleared one year later.
19 TOGETHER WE CAN: SEE OUR FUTURE
I have since completed a Post Graduate Diploma in Public Health, a Diploma in Project Management and Certificate IV in Training and Assessment. This would not have happened before treatment as I was suffering from serious brain fog. Getting treatment has meant that the government is not responsible for looking after me or my young children anymore. I moved to Australia and I am proud to be a contributing member of society. I do not rely on Centrelink payments. Sometimes I wonder what would have happened to my health if I did not get treatment – I guess I might be on the liver transplant list or worse, in a grave somewhere. Treatment has been very important in my life. My son was five years old when I began treatment and saw me struggling with side-effects every day. I can’t imagine how hard it has been on him. He has seen the changes over the years though and finally has his Mum back. I am thrilled that there are new therapies being developed with a much shorter treatment time and with fewer side-effects. These treatments mean less suffering and a quicker solution to symptoms that can be unbearable or even lead to an eventual death.
I used to ask Mummy why she was sleeping all the time. Treatment meant I got my mummy back, I can now play sports with her and there is no excuse!
Fungisai’s son, 11 years old
20 TOGETHER WE CAN: SEE OUR FUTURE
My children have never experienced a hepatitis-free life AMANDA MCCARTHY AGED 44 TEWANTIN QUEENSLAND
For me, a cure has meant the freedom to live my life to the fullest without fear. It has given me self-worth as a mother to two beautiful children, enabled me to be a valued worker and an active community member. It means having rights and not feeling like I have to hide from the world. I contracted the virus when I was 26 years of age. After I gave birth to my children, now aged 14 and 16, doctors discovered they had sadly contracted the virus via mother-to-child transmission. They have lived with the virus and its symptoms their whole lives. For them, a cure would mean a freedom of which they have never known. They could be themselves, share their personal lives with others and not have to hide anymore. They would have the energy to concentrate at school, live with confidence and not be restricted for the first time in their lives. I don’t want this virus to be hanging over the lives of my children because of the mistakes I made. Going through treatment for hepatitis C taught me to care about myself and value the life I have – it was a gift. I want my children to have this same gift. After having my children, I worked hard at getting my life back on track. I changed many things; I focused on healing my mind, body and spirit, continuing my journey with a positive mindset. At age 37, even though I was showing no symptoms other than fatigue, my doctor delivered the wakeup call – no matter how well I treated my body now, hepatitis C would most likely slowly destroy my liver and claim my life.
I went through 12 months of treatment with interferon and ribavirin, unable to work and caring for my children on my own. Every day was a struggle; I knew it would be tough and I had to let myself go through the motions. In the long run, it was entirely worth it. I didn’t realise how badly hepatitis C impacted my life and affected me as a person until it was gone. I was forced to treat my hepatitis C with the only treatment option available. I am forever grateful for my recovery and want my children to be free from hepatitis C like I am. Unfortunately, they are too fragile to go through such intense therapy. My wish is for them to have a cure without having to go through the trauma that I experienced. My children have never experienced a hepatitisfree life – I want them to be able to really live their lives for the first time.
Going through treatment for hepatitis C taught me to care about myself and value the life I have – it was a gift. I want my children to have this same gift. Amanda
21 TOGETHER WE CAN: SEE OUR FUTURE
Early treatment is the answer I am not yet certain of being cured of hepatitis C. A week before writing this I completed a twelveweek course of the direct-acting antivirals sofosbuvir and simeprevir. I have had three previous attempts at a cure with interferon-based therapy but they all failed with particularly nasty long-term side effects. At present I am in remission with no virus detectable. I can only consider myself cured if the virus remains undetected for at least the next three months. I am fortunate to have had my treatment funded by the Department of Veterans’ Affairs. I would not have contemplated this expensive treatment otherwise. After living with hepatitis C for somewhere between 35 and 45 years, I have well established but compensated cirrhosis of the liver with portal hypertension and other complications. A cure for me would mean the arrest of progressing cirrhosis and possibly some improvement in liver function. It would also mean a good chance of an improved quality of life and living longer. My battle with hepatitis C has also had an impact on my wife. Living with a person who has hepatitis C means constantly making concessions and allowances which take an emotional and physical toll. A cure would mean a significant improvement in outlook and quality of life for her. The impact of hepatitis C and three failed treatments had a devastating effect on my
academic career – I was forced to retire much earlier than I would have wished. The economic cost to my family and to the health system has been considerable. If direct-acting antivirals had been available and affordable 25 years ago, I would have been able to contribute far more to society. Clearly, if we neglect to treat our younger people as early as possible, the costs will be far greater in the long run.
Clearly, if we neglect to treat our younger people as early as possible, the costs will be far greater in the long run.
DAVID RUXTON AGED 64 AINSLIE AUSTRALIAN CAPITAL TERRITORY
22 TOGETHER WE CAN: SEE OUR FUTURE
I consider myself so lucky EILEEN WOOD AGED 56 PERTH WESTERN AUSTRALIA
Being completely cured of hepatitis C has given me back my previously healthy, active and busy lifestyle. Having contracted the virus sometime in the 1980s, for many years I was completely unaware that I was living with the infection. Achieving a cure was not easy and I did whatever was necessary to make it happen. In 2012 I began a seven-month treatment of interferon, ribavirin and boceprevir. I had rather serious and debilitating side-effects which required me to have multiple blood transfusions. This had a severe impact on my life, preventing me from working and living life the way I wanted to. Now, all of that is just a memory. I am working, horse riding, travelling and socialising again – I consider myself so lucky. Sadly, two of my close friends who also lived with hepatitis C were not so lucky. One died two years ago of liver cancer, after succumbing to cirrhosis and unable to find a cure. Another very dear old friend also has liver cancer and has been given six-to-nine months to live. Both were diagnosed with hepatitis C several years ago but did not undergo treatment. People need to know; this virus has the ability to take everything away. After finishing my treatment and achieving a cure, I began volunteering at Hepatitis WA because it became very clear to me that despite the seven months of hell I went through with treatment, I got off very lightly. I believe that others should have the same opportunity as I’ve had for a second chance.
Exciting new treatments will give people a second chance. They are quicker, more effective and less gruelling. The beauty and wonder of being alive is worth doing whatever is necessary and everyone deserves the best chance at having their life back.
The beauty and wonder of being alive is worth doing whatever is necessary. Eileen
23 TOGETHER WE CAN: SEE OUR FUTURE
I am forever grateful Rehabilitation has completely changed my life. Once a heavy drug user, I have turned my life around. I have met the love of my life, completed rehabilitation, given up drugs and cigarettes and am constantly choosing happiness. Rebuilding my life means conquering the things that have plagued me because of my past. My priority now is curing hepatitis C. After many visits to the liver clinic and repeatedly being told to hold on because new and better treatments were coming, I became disillusioned. The wait was so long and I was conscious of the threat of liver cancer. The onset of cirrhosis and worsening symptoms finally got to me and I couldn’t wait any longer. I am now half-way through a six-month course of simeprevir therapy. I know the therapy is the right step to continue rebuilding my life but I’m afraid it will consume me and take away everything I’ve worked so hard to regain, specifically my health. Already, the treatment is very uncomfortable. I’m used to being exhausted from hepatitis C and the onset of cirrhosis, but the effects of treatment are so much worse. I’ve had a horrible sore throat and ear infection that has lasted for six weeks. One of the most difficult things about living with hepatitis C and treating it is having to hide my exhaustion from others. I fear sharing this information with my workmates because I know that the moment I tell them the atmosphere will completely change. There is so much misinformation and ignorance about this virus that I know I will be marginalised. It is impossible to tell what the consequences will be, so I only disclose this information to people who need to know. I am forever grateful to the government for rehabilitating me, treating me for my hepatitis C and fundamentally changing my life, hopefully extending it by 20 or more years.
A cure will mean a better quality of life. I’ve spent so long waiting for a cure. I’ve watched friends die because of liver cancer and I have friends who have not been able to handle traditional interferon therapy. I figured that it’s only six months and I can get through it. I’ve finally found my place in the world. I live in a nice house with my beautiful wife and have a positive outlook on life. The only thing I have left to conquer is hepatitis C and I am determined to give it my best shot. I hope this story somehow helps others access better treatments and find a better path in this life.
From the moment we met, Francis’ mortality was on his mind. So taking advantage of a new publicly-funded treatment is momentous for him. I think a complete reversal of the virus would mean the chance to fulfil some long-held dreams and aspirations anchored by the prospect of a contented, settled, fulfilled – and healthy – future with his loved ones, especially his children. This is enormously important to him.
Kelli, Francis’ wife
FRANCIS MILLS AGED 50 HACKETT AUSTRALIAN CAPITAL TERRITORY
24 TOGETHER WE CAN: SEE OUR FUTURE
We will fight this with everything we have JO SLOAN AGED 56 LES SLOAN AGED 57 SALISBURY NORTH SOUTH AUSTRALIA
For my husband Les and me, hepatitis C has cast a dark shadow over our family since 2011 and is progressively taking over more and more of our lives. This deadly virus has consumed Les and now it is overwhelming me. We would both love a cure, but sadly it may now be too late for Les. The virus has destroyed his liver and we don’t know how much longer he can hold on. The brutal reality is that unless I’m cured soon, I face the same fate as my loving husband. Les has been living with hepatitis C for more than 30 years, yet was only diagnosed in 2011. He had been asymptomatic until he became really ill and the doctors confirmed both hepatitis C and cirrhosis of the liver. Earlier this year, Les discovered he had a four-anda-half centimetre tumour on his liver. When Les was first diagnosed with hepatitis C, our doctor was hoping to get access to a trial medication. Now that the tumour has appeared, treatment is out of the question. Curing hepatitis C is no longer a priority, stopping the tumour from killing Les is our focus.
When Les was diagnosed in 2011, I had my blood tested too – fortunately I was negative. We were incredibly careful to ensure I wasn’t exposed to the virus, however despite our best efforts, in 2013 I contracted hepatitis C. Les was extremely upset and wracked with guilt, but it was not his fault… it is the virus we blame. Fortunately, hepatitis C hasn’t as yet taken a toll on my health. Doctors have warned me that the side-effects associated with current treatments are simply too much and would mean I can’t be there for Les. He is my husband and I need to be his rock. Like most couples, we had mapped out our retirement. Once the kids were old enough to leave home, we would retire and spend our time experiencing the world. Because of the hold hepatitis C has over us, the only places we see are our home and the hospital – this is our life now. It kills me to see Les in pain. Since discovering the tumour, there hasn’t been a moment that he is free of pain. He is always exhausted; there are times when I will be having a conversation with him, look away for a second and he will have collapsed asleep in his chair. Knowing the amount of pain and fatigue he will experience over the next few months sickens me.
25 TOGETHER WE CAN: SEE OUR FUTURE
Like Les, there would be many Australians who have lived with hepatitis C and only found out about the virus when it was too late. While Les’s symptoms were hidden for decades, having a simple blood test years ago could have prevented the illness he now confronts. Getting a blood test is easy and so important, especially if doctors can then offer a safe and effective treatment. Les and I will fight this liver-destroying virus with everything we have. The support of doctors, nurses, specialists and everyone involved in our lives means so much to us. We will continue to seek a cure and ensure everyone else living with hepatitis C does not have to go through the same excruciating journey we have.
I would be over the moon if Jo and Les could be free from hepatitis C, as I feel no one deserves to go through this. Rob, Jo and Les’s friend
Sadly, Les passed away on 24 May 2015. Our thoughts remain with Jo and the Sloan family and their friends.
26 TOGETHER WE CAN: SEE OUR FUTURE
I won’t let it control my life MALCOLM COCKRUM AGED 70 DUBBO NEW SOUTH WALES
I have haemophilia and I contracted hepatitis C through a blood transfusion. I live with hepatitis C and haemophilia, but I won’t let it control my life. I was umpiring in an AFL game at 25 years of age and sustained an injury that required a blood transfusion. Through this blood transfusion I contracted hepatitis C. I have been living with the virus for more than 40 years. To my good fortune, hepatitis C has hardly impacted my health. Other than a small amount of liver damage, I haven’t experienced many symptoms. I considered starting interferon treatment soon after my diagnosis but my symptoms just weren’t bad enough to justify it. Back then, having a cure just didn’t mean that much to me. In February 2013, I had some dental work done and because of my haemophilia, I had to go through a specialised process to minimise blood loss. The nurse asked me if I knew about newer hepatitis C treatment options that could help me, so I decided to have a look. A few months later, I started a therapy consisting of interferon, ribavirin and boceprevir. This lasted no more than six months before my doctor pulled me out as it was unsuccessful and causing me a great deal of pain. During those six months, I experienced every side-effect associated with the treatment. I was nauseated, tired, had mood swings, lost weight, lost hair and had rashes – I never knew it would be that difficult. Because I also live with haemophilia, I really struggled to cope. I have now recovered from the side-effects of treatment and I am surprisingly still intent on finding a cure. I have tried asking my doctor to put me
back on, but he says the risks aren’t worth the small chance of a cure with the limited treatment options currently available. We both agree that I will have to wait until new treatments become available and affordable, before I try again for a cure. A positive mental attitude has helped me immensely throughout my experience. I am going through this journey with a purpose and that’s really why I was prepared to go through such a horrible experience again. The light at the end of the tunnel is not a train ploughing towards me, but a healthy liver. I will do whatever I can to get rid of this virus; I am waiting until better and more effective treatments come along – I’ll be on it straight away. I strongly urge anyone going through treatment or struggling with their hepatitis C to adopt a positive mental attitude. I implore anyone who thinks they may have been exposed to the virus to have a test because they may be living with it without even knowing.
I look forward to the day when we don’t have the thought of possible future liver disease and can enjoy our retirement without that worry on our minds. I support Malcolm in his desire and hope for future successful treatment. Lyn, Malcolm’s wife
27 TOGETHER WE CAN: SEE OUR FUTURE
I felt like a toxic time-bomb A cure has provided a completely new lease on life; it’s a second chance. Living with hepatitis C made me feel like a toxic time-bomb. Now, I am completely free from hepatitis C and its debilitating symptoms and free to enjoy my life again.
team around me. I was lucky enough to record a positive response to treatment at six weeks which is essentially what kept me motivated. I could see that treatment was working and that was enough to keep me going.
In 1989, when I was diagnosed with hepatitis C, I was told I should expect to die in the next 10 years. The news shook me to my core. I lived with it as best as I could by giving up alcohol – which probably saved my life – and starting work for the Northern Territory AIDS and Hepatitis Council. I educated myself about the virus and potential treatments. I realised, finally that there was something I could do.
Eventually I cleared the virus. There was a huge relief at knowing the mistakes of my past no longer define my future. I am now fully recovered from the treatment but in a nasty twist of fate, I have contracted the Ross River virus, but that is just another challenge I will conquer.
I decided it was time to bite the bullet and start treatment. Even though I didn’t drink and my liver was still coping well, it was horrible living with the virus. Although I knew the reality of transmitting the disease, I would still freak out if I cut myself. It changed the way I interacted with people and I withdrew socially. Treatment was horrific. I started a six month course of interferon and ribavirin in June 2011 and I felt every side-effect there was. At my lowest point, I would be driving along the highway to work and would spot a road train coming and I would consider spinning the wheel and ending it all. Treatment really knocks you around and the mental grip it had on me could have easily destroyed me. Towards the fourth month of treatment, my white blood cell count became dangerously low and doctors had to significantly reduce the amount of interferon I was receiving. I really struggled through treatment but I had an amazing support
The current interferon-based treatments are very difficult to manage and even if you are mentally strong, they tear you down. Access to new treatments would vastly improve the opportunities for all people living with hepatitis C. They would have a far greater success rate in clearing the virus and it would be life-changing for so many Australians.
Mum has a new lease on life. She has gone from being an introvert to an extrovert.
Laura, Fiona’s daughter
FIONA CLARKE AGED 55 WINNELLIE NORTHERN TERRITORY
28 TOGETHER WE CAN: SEE OUR FUTURE
The shackles had been broken SHANE YULE AGED 31 CAIRNS QUEENSLAND
I found out I had hepatitis C when I was in rehabilitation for substance abuse in 2003. I knew that the one time I shared a glass syringe in a seedy boarding house in Glebe, laying on a urinestained mattress, watching my heart beat through my scrawny chest, would come back to bite me, and here it was. Regular blood tests were a condition of the residential treatment program, and that’s how I found out I was infected. The nurse called me to her office and read me my results, telling me that ‘my hepatitis C liver function tests were a bit high’... I was stunned. Did she just say that? ‘My hepatitis C liver function tests were high?’ “Oh I am sorry Shane, I didn’t realise you had no idea,” she said. No nurse, I did not know. I didn’t really care about being infected. I figured Pamela Anderson had it, so it couldn’t be that bad. I made it my dirty little secret, my badge of honour for being a junkie. I didn’t go to prison like the rest of the hardcore junkies that I did rehab with and I used it to prove I was still part of the gang. Gradually, as I met other addicts, I found out other people had it as well. As the years went by and I started to clean up my act, I realised it wasn’t so glamorous after all. The looks from doctors and nurses; the triple gloving before they touched me; the vacant stares; and the holding of their breath, hoping they didn’t breathe in the same air as me. I was tainted, I had hepatitis C.
I was approached by my doctor and asked about taking a triple combination therapy of interferon and a ton of tablets. Before I knew it, I had a release form waiver in front of me signing away any chance of challenging the pharmaceutical company if I was to get any sort of adverse reaction or even die. I was hesitant, but what the hell. I signed it anyway. I received my pack of tablets and injections and started treatment. Each Thursday, I knew I would feel like death warmed up for the next four days. After I’d inject myself in the stomach I’d have body aches and feel like the world was imploding. I experienced depression and feelings of despair but I forced myself to stick with it and suck it up. After all, this was helping me, right? My virus level was dropping by the month. I felt like shit but it was working. I was told that if I hadn’t cleared the virus within six months they would cease treatment. However, if the virus was undetectable in my system I would need to continue taking it for another few months to make sure it was completely gone. My partner really kept me going… him and the hope that I could actually beat the virus. After six months the test results came back and the virus was undetectable. To be on the safe side, I continued taking the medication until the doctor advised me not to.
29 TOGETHER WE CAN: SEE OUR FUTURE
I went to see the doctor for my final lot of test results after the treatment ended. “Shane, your hepatitis C is undetectable. You have a second chance,” he told me. Is this happening? I felt like the sun had just risen – I was elated. I was no longer tainted and the shackles that tethered me to my addiction and wayward youth had been broken. I don’t have hepatitis C anymore. It worked, I’m cured.
Shane is the light in my life and the change I have witnessed since we met has been inspirational. He has always been honest with me even with his hepatitis C and when we learned there was a treatment we talked of the possibilities. Treatment was tough but it was all worth it when I saw the light in his blues eyes had changed. When he got the all clear from the final test results there were hugs, smiles and tears. That day, a new person was born. The ghosts of the past are still there but they no longer haunt him – they are just memories now. I am so proud of you Shane. I love you so much for sharing your story to help others. Scott, Shane’s partner
30 TOGETHER WE CAN: SEE OUR FUTURE
I’m not a quitter; I will be cured JAYE HINCHLIFFE AGED 57 CAIRNS QUEENSLAND
After three unsuccessful attempts at treatment, new interferon-free therapy is my only chance. I have proven that I’m not a quitter – I won’t give up; I will be cured. I’ve gone through all the treatments available on the PBS and I don’t have the thousands of dollars to pay for these expensive new medicines. I have more health problems than I can count thanks to 74 weeks of combined anti-viral treatment with no positive result. Unless new treatments are added to the PBS, there is nothing left for me. My first treatment involved three months of interferon injections. After being sick for seven years and finally diagnosed in 1996, I had my first opportunity at a cure. I began monotherapy with interferon in 1999, those three months were absolute hell and it did not change a thing – the virus won out. In 2009, I saddled up for a second time, receiving a combination therapy of interferon and ribavirin. I gave it my best shot but after 26 weeks of horrendous side-effects, I was still without a cure. I thought I would never be cured and that this is what my life would be like until I die. Through the Hepatitis Queensland community, I came across an excellent doctor with a great reputation who convinced me to give treatment another shot and I began a round of triple-therapy. While I was receiving therapy, the blood tests showed the virus as “undetectable”. My picture shows me with what I thought would be my last ever treatment injection. However, less than three months after I finished treatment, my viral load was off the charts. I had endured another 36 weeks of agony for nothing.
Today, I’m tired all the time; I want to sleep during the day; and I never go out – I don’t have much of a life anymore. There is nothing left for me but to hope our government provides people like me with access to these new treatments. The latest medicines are a miracle for people living with hepatitis C and are curing thousands of people overseas, so I ask: why are we so far behind? A cure would mean an opportunity to live the rest of my days the way I want to – without this damn virus.
Throughout the time I’ve known Jaye she has been an amazingly supportive, loving and very kind friend to so many people from the Cairns community. I know Jaye is one person who would benefit enormously if she were given the chance to have the new type of hepatitis C treatment, where statistics indicate a much higher success rate and a shorter treatment period with fewer side-effects. Karen Madsen, Jaye’s friend
31 TOGETHER WE CAN: SEE OUR FUTURE
A clinical trial saved my life Given there was only a small chance of curing my hepatitis C with traditional therapy, I saw a clinical trial as my best hope of a life free from the virus. Interferon and ribavirin were predicted to be too taxing – both physically and mentally, so my doctors recommended that I join a clinical trial of a new anti-viral therapy. I had been living with hepatitis C for more than 30 years and had been holding out for a treatment option that was not only effective, but didn’t come with terrible side-effects. I desperately wanted to get rid of the virus, but without having to go to hell and back. I knew my liver was starting to deteriorate and the prospect of a liver transplant loomed on the horizon. Also, my particular hepatitis C genotype was the most resistant to current treatments which meant my chance of achieving a cure was much lower. So, I joined the trial and received three months of treatment with a triple anti-viral therapy. I experienced no side-effects, the treatment was easy to take and above all it was successful. Yes, I’m one of the lucky ones – cured and in around a quarter of the time it would take to be treated with traditional therapy. I’m incredibly grateful to have had access to this new treatment; it has changed my life completely. Now, I don’t have to worry about other people coming in contact with the virus if I bleed. As a trade-school teacher and an upholsterer, I regularly cut myself; now I know that my blood is not a threat to anyone else. That’s a huge relief – as is knowing that I won’t develop serious liver disease as I grow older!
I am so grateful that I was a part of the clinical trial, the new treatment and the doctors at the hospital have given me my life back. I hope all people living with hepatitis C can receive this new medicine and enjoy life without this liver-destroying virus.
I was thrilled when Jen called me to say that she had cleared the virus. The elation in her voice continues to resonate with me today. Undergoing treatment through a trial that is not yet approved by the PBS was interpreted by Jen as being ‘lucky’; being lucky has not been taken for granted by her. My wish is that it will only be a short matter of time before all people with hepatitis C are able to access treatment with such high efficacy rates and few side-effects. Emily Lenton, Jennifer’s friend
JENNIFER CRITCHLOW AGED 60 FERNTREE GULLY VICTORIA
32 TOGETHER WE CAN: SEE OUR FUTURE
My doctor hugged me with hearty congratulations MIKOL FURNEAUX AGED 57 SPENCER NEW SOUTH WALES
Each year, I had a discussion with my doctor about hepatitis C treatment options. This long standing ritual ended in February 2006 when in complete desperation I agreed to interferon treatment. I thought the previous decade of intermittent vomiting and a gastric disorder was bad, but it was nothing compared to the 12 months of hell I was about to endure. I appeared so pale, gaunt and weak that many people naturally thought I had cancer. It was physically and mentally punishing, but while the toll was high, the treatment was worth the cure.
My mental state was in sharp decline, and just after the compulsory 12 week viral load test I signed over my power of attorney to a close friend who had become my carer. This enabled him to take control of my finances and manage my appointments. It was a good decision – after 14 weeks of treatment I was found outside my house yelling abuse at the passing traffic. A psychiatrist explained that ‘organic mood disorder’ was a side-effect of the interferon. I was prescribed powerful antipsychotics which unfortunately came with their own side-effects.
The treatment made me so ill that I was reluctant to take the interferon injections. To ensure I complied with therapy, I had a weekly doctor’s appointment scheduled for every Thursday afternoon. My GP would inject me and then I would spend the next four days in crippling pain, recovering just enough to crawl back to work on the Tuesday. This went on for 48 agonising weeks.
I knew that being cured would mean a better life, but I was constantly questioning the value of the life I had at the time. The treatment was gruelling and I remained on the antipsychotics. Luckily, the high dose of antipsychotics was gradually reduced and after I had my last interferon injection I could feel myself regaining some sort of control.
My employer was very understanding and allowed me to reduce my hours; they even assigned me less complex duties. But, even with that concession, I was only managing half days and ended up having to rely on sickness benefits to survive. I am forever grateful for my employer’s support and flexibility during what was such a rough time. When I was not at work, most of my free time was spent in bed and in a complete daze.
After the dreadful year of suffering, my doctor hugged me with hearty congratulations when the results clearing me of hepatitis C came in. Being cured was like a dream run for a few years; better sleep, an appetite and no vomiting. This was respite for my close friends who had always been there to assist me. One even noted that it was especially good that I could to go out to dinner with them and share a good bottle of wine while still having the energy to keep up with the conversation.
33 TOGETHER WE CAN: SEE OUR FUTURE
While I was being treated I was given a copy of the Hepatitis C Journal by my liver specialist and entered a competition to win a care pack. I also noticed an advert asking people on treatment if they would volunteer to be a peer support worker for the Hepatitis C Connect Project. I have continued to talk to people who are considering or undertaking current treatment options and I make the difficult journey to Sydney once a year for training. Almost three years after I completed treatment, I developed a rare condition called Multiple Chemical Sensitivity (MCS) which has been attributed to the medieval hepatitis C treatment currently available to Australian citizens. I can’t work anymore and I now live on the Disability Support Pension, isolated from the community and the world, requiring oxygen and carbon filtered masks to venture out of my house. Never should we accept a situation where a cure comes with as many complications as the disease – living with hepatitis C is punishment enough. Australians brave enough to seek a cure need to be confident that the pay-off far outweighs the cost. Let’s put an end to interferon; let’s embrace a brave new treatment era.
Being cured for Mikol was like a renewal, a new start to life, removing his fear of continually getting sick. The irony is that he now has Multiple Chemical Sensitivity (MCS).
Kate, Mikol’s friend
34 TOGETHER WE CAN: SEE OUR FUTURE
How many more lonely epitaphs? PAUL GIFFEN AGED 55 INNISFAIL QUEENSLAND
Together with my wife, we have a beautiful 11 year old daughter. I contracted hepatitis C in 2011 and, despite not drinking alcohol for the past 14 years, I had fatty liver disease; together they resulted in me developing cirrhosis. Unfortunately for me, they make for a deadly health destroying ‘tag team’. I could spend a long time explaining and justifying my particular circumstances, but instead I want to provide an unbiased view of what it is like living with this insidious disease and its impact on those you love. Sadly, my story is not dissimilar to that of the more than 200,000 Australians living with chronic hepatitis C. For us, an average day can vary greatly. Our home was once an active and vibrant ‘safe haven’, but since my diagnosis it has become sombre and full of false hope, trepidation and stagnation. There are periods of intense activity spurred on by hopeful news and reports of new treatment options, off-set by refusals and rejection from trials and access programs. In the midst of this, our typical day can be full of surprises. From the time we hold hands and give thanks for our lives and food – during which my daughter always prays that, “the medicine will arrive and daddy will be able to stay around for longer” – to the small hours of the night where I can’t sleep due to the metabolic disorder caused by my cirrhosis that is ‘rearranging’ my bio-rhythms.
Hepatitis C can cause impotence, chronic fatigue, pain, stress and depression. As such, I have not enjoyed sexual intimacy with my wife for far too long and I often spend as many as 22 hours a day in bed, too weak or pained to move around. My wife is my carer and fortunately she has an indomitable and optimistic nature. She not only makes my life comfortable, she also makes it meaningful. I have had to deal with the reality of my current state of health – I will never swim, rockfish or surf again. Hepatitis C has not only robbed me of physical ability, it has also impacted my ability to think. Once upon a time I taught, worked, wrote songs and poetry, now I sometimes babble nonsensically to myself and have difficulty with the most basic concepts. I have watched two sole parents living with hepatitis C commit suicide because of the deep depression and sense of hopelessness caused by the illness. I have been there too, on the edge of taking my own life to spare my family the burden of witnessing my slow and agonising demise. Adding to the personal and private torment hepatitis C inflicts on individuals and their loved ones, there is also the public stigma that surrounds the disease and the way it is contracted. It is invariably associated with illegal, high-risk behaviours, none of which attract public sympathy or support.
35 TOGETHER WE CAN: SEE OUR FUTURE
Whether we are socially vilified or pitied, hepatitis C is a looming health crisis that cannot be ignored. The government has to commit to addressing this issue as it is simply too big to be ignored. A first step is affordable access to the latest and best treatments. It is frustrating to know that there are new therapies that can provide a cure and a life free from hepatitis C available in the United States and Europe, but not Australia. These interferon-free therapies are the light at the end of the tunnel. I would hate to think that while my health and the health of thousands of other Australians continues to deteriorate, the government and the pharmaceutical companies are in a ‘Mexican standoff’ over the terms and conditions to making these therapies available. Yes, these therapies are expensive, but so is the burden that hepatitis C has on individuals and the community. These drugs represent a more viable and inexpensive option to prolonged intensive care and hospital admissions, liver transplants and treating liver cancer. Living with hepatitis C is bloody hard. Physically and mentally it is torture and it is made even worse by knowing that treatments and potential cures are just out of reach. Remember, my story is not unique. It is being played out in households across Australia.
Perhaps the saddest part is that these new medications will eventually be made available in Australia, but for many it will be too late. What remains to be seen is exactly how many more lonely epitaphs to indifference are pointlessly created.
A cure for Paul would mean that our daughter Shekinah will grow up with a father. As a family, we are concerned the effect this virus has on Paul will have devastating and permanent emotional damage to our daughter. We are such a close family, we need a cure. Marjorie, Paul’s wife
36 TOGETHER WE CAN: SEE OUR FUTURE
I was fearful of the decline in my health AMANDA KENYON AGED 57 BYRON BAY NEW SOUTH WALES
Despite having lived with hepatitis C for 20 years, it took a decade for my gastroenterologist to convince me to seek treatment. I had done extensive research on the side-effects of ribavirin and interferon, which is why I had always been so hesitant. I had also heard first hand from other people living with hepatitis C of their gruelling experiences through treatment. I told my specialist that treatment was like chemotherapy and I would never put myself through that. Just as I feared, seeking a cure meant going through five months of hell. In 2005, I decided to start treating my hepatitis C because I had developed chronic pancreatitis. The side-effects of treatment were horrific. I experienced all the side-effects associated with an interferon and ribavirin-based therapy plus a few extra. As soon as I took the first interferon injection, I experienced an intense pressure behind my eyes. Along with constant headaches, nausea, extreme vision disturbances and nosebleeds, these symptoms stayed with me for the duration of treatment. I endured five months of excruciating symptoms before begging my doctor to take me off treatment. I had an intuition that I had cleared the virus after three months and test results verified this. The problem was that the therapy was supposed to last for six months to make sure the virus was completely eradicated – I just couldn’t do it anymore. Now that I have completed treatment I feel so relieved. The hepatitis C virus has never returned. The compelling difference for me is that I no longer live with a potentially deadly virus, whereas prior to treatment I was constantly fearful of the inevitable decline in my health leading to disability and a
shortened life-expectancy. I am also free of the stigma and discrimination I experienced when I had the virus. Treatment is something I never want to go through again and I hope nobody else has to. If the Government doesn’t fund the new treatments, hepatitis C will continue to be a burden on the Australian healthcare system. Inevitably in years to come, there will be more and more people with the virus and the prospect of life-threatening liver disease. We have the ability to make a difference to their lives today.
A cure for my sister has meant that I don’t have to worry about her going on to develop cirrhosis or liver cancer. I’m so grateful that she was able to clear the virus in five months but watching her go through the combination treatment was awful as it made her so sick. I know that my sister feels much better about her life now that she has cleared the virus and no longer has to identify herself as having hepatitis C. Michelle, Amanda’s sister
37 TOGETHER WE CAN: SEE OUR FUTURE
I consider myself one of the lucky ones Hi, I am Neil and I’m 50 years old. I have genotype-1 hepatitis C. I contracted the virus by sharing a needle with someone who, probably unknowingly, transmitted it to me when I was just 14 years old. I was completely unaware that I had the virus until a routine blood test at the age of 28 changed everything.
New and better treatments are available overseas but our government seems reluctant to make them available in Australia. Why? I think it is cost – plain and simple. All hepatitis C therapies are expensive, and some are very expensive. But the real cost is to those that don’t receive treatment and end up with liver disease.
I have never noticed any symptoms and to this day remain very healthy. I had no intention of seeking therapy. Well, that’s how I felt about it until two years ago, when my wife said she was leaving. Complete devastation followed.
We can eradicate hepatitis C but we have to throw everything we have at it. Investment in education and treatment is what is required. I am thankful for my chance at a cure and to the Australian taxpayers for helping fund my treatment. What is the alternative? There are more than 200,000 Australians living with chronic hepatitis C. Do the math; be humane; and wish me luck!
That’s when I decided to seek a cure. Some men turn to drinking to cope. Not me; I made a choice to be healthy and happy. After all, I consider myself one of the lucky ones. I started to think of my future, a new future, and possibly a new relationship. A cure would mean I could say, “Hi, my name is Neil”, not, “Hi, my name is Neil and by the way I have hepatitis C”. I am not ashamed of the condition, in fact I came out soon after my marriage ended and told my workmates, friends, and anyone who I thought should know. What a relief it was! For me, the most devastating thing about being hepatitis C positive was the constant fear – not of sickness or death, but rejection, ignorance and discrimination. If I could give one piece of advice to those diagnosed with the virus it is don’t be ashamed. You are not alone, so don’t hide it from people who matter to you, no matter how you contracted the virus. On the 23rd of January 2015, I began my journey and started therapy. It is only early days but I’m focused on the end game – a cure. I want to rid my life of this virus.
I believe my uncle will use this treatment as an opportunity to shine and be an inspiration for others in a similar situation. For him, this is a new chapter – a fresh start. He will make the most of it with a positive mindset and a grateful attitude. He will continue to be a source of motivation and wisdom for me, someone who speaks truly and with love. I know that this treatment will make him stronger and I am excited for him.
Jacob Allinson, Neil’s nephew
NEIL ALLINSON AGED 50 QUEENSLAND
38 TOGETHER WE CAN: SEE OUR FUTURE
I refuse to be discriminated against JULIE “JULES” CASSIDY AGED 55 WYCHEPROOF VICTORIA
Living with hepatitis C in a small community where people have little access to vital information has been difficult. Working as a hepatitis C educator, I have heard countless stories of discrimination and experienced it firsthand during the past three years. I found myself living in a women’s shelter in 2012. While I was there, other residents disclosed that they were also living with hepatitis C and told me of the discrimination they had endured. Sadly, through misinformation and a lack of education in the community where I lived, I was viciously bullied by the some of the residents and treated with ignorance in relation to the virus by a few of the staff – simply because I had the virus and they were fearful of contracting it. Nobody would help me, I was on my own and forced to defend myself. I didn’t realise how much discrimination against people with hepatitis C was deep-seeded in our society. I was very much on my own aside from the support from a few close friends and Hepatitis New South Wales. Through my work as a hepatitis C educator – both paid and unpaid – I have been lucky enough to have an opportunity to have a voice. I can speak out against discrimination; I am not ashamed. I refuse to be discriminated against because I contracted the virus through something that’s deemed socially unacceptable – intravenous drug use in my past. How one acquires the virus is irrelevant; everyone with the virus should be treated with respect and compassion, not discrimination.
I have always been a fairly energetic person but this virus has taken that away. The dominant symptom I live with is chronic fatigue. I would love to keep working in community development but the fatigue is too much. I sleep a lot of the day and am unable to spend more than a few hours out of the house. I don’t know if I can ever go back to work again, even part-time. I loved my work in community services – it was my life. I want to be able to help people in need and make a difference in my community. I can’t do that anymore because my energy levels are too erratic and I need to rest consistently throughout the day. My doctor is unwilling to treat me with the currently available therapy because I’m deemed too much of a risk due to my history of bipolar disorder. They tell me that treatment could exacerbate my mental illness. I am dreaming of and waiting for new, simple and safer treatments to be made available. I have heard wonderful responses from people who have successfully cleared the virus in relation to renewed energy and life offering up new opportunities. They tell me it’s like a new world when the virus is cleared. They feel so much healthier and more energetic; I wish I could have a life like that. My only hope is for better treatments to come along, I need a cure. I would be so grateful if a cure became available to me and others living with the virus.
39 TOGETHER WE CAN: SEE OUR FUTURE
I see the frustration that Julie goes through most days living with the debilitating hepatitis C virus. We are the same age and I know she would love to be able to get up and go each morning and be able to work, socialise and live life like those of us without this disease. Living without the disease would mean she could hold down a full-time job and contribute to the community. She could support herself in a job and not rely on government payments. I can’t imagine what this would mean for her self-esteem and mental health. Everyone should be able to have access to the chance of a cure! Ann Durie, Julie’s friend
40 TOGETHER WE CAN: SEE OUR FUTURE
I live in hope for new treatments MARIAN DONNELLY AGED 59 CURRIMUNDI QUEENSLAND
The only thing I desire right now is a good chance at a reasonable life expectancy. A cure from hepatitis C would mean I can continue to do what I love. At 59 years of age, I am doing as well as I possibly can in my career as a physiotherapist and want to be able to pursue my passion, and I certainly want to grow old. As my husband is currently unemployed, I am working two jobs – it is exhausting. If I work for two days, I’ll normally sleep for nine hours and still be exhausted, needing another two days off to recover. That’s the reality of hepatitis C. I do make an effort to exercise and play competitive tennis as much as my body lets me – I guess I’m trying to make hay while the sun shines. Undergoing six-monthly liver checks, I live in hope that our government will PBS list the drugs that could make such a difference to life expectancy and quality of life for me and everyone else living with hepatitis C. After contracting this disease back in 1974, I am really fortunate to still be here without my liver shutting down. My friends, colleagues and most family members have amazed me with their ongoing kindness and support. I am grateful that I did not pass the virus to my husband and children. My best chance of fighting this virus is to be as fit as I can be in mind and body. I am compelled to find out as much as possible about hepatitis C and its treatment, while ensuring there is medical and emotional support when needed. Hepatitis C support groups have provided me an opportunity to talk with others who have the virus and help each other as much as possible.
I love playing competitive tennis, so for me a cure would mean more energy, more stamina and more time out on the court.
When my mother was diagnosed, it was as if a cloud had blocked the sun. If she was cured, I would feel relieved beyond words. Nick, Marian’s son
41 TOGETHER WE CAN: SEE OUR FUTURE
There is always a chance for a cure The biggest obstacle I faced in seeking a cure was the amount of misinformation I had received when I was first diagnosed with hepatitis C. I was told by my doctor that the virus would resolve itself, and 10 years later when I decided I wanted to have children, I was told that I couldn’t because I would pass the virus to them and that I had to have protected sex with my husband. I was told that I couldn’t adopt either because my condition would prevent it. As you could imagine, complete devastation followed, it was soul crushing. The complete misunderstanding of hepatitis C sent me into a downward spiral, leading to a nervous breakdown. My friend pushed me to get a second opinion because I was so distraught. This doctor told me that what I had been told was ridiculous and in reality, there was only a very small chance of passing on the virus to a child. Having two beautiful children has been the greatest gift in life. However, there was always a fear that I had transmitted the virus to them and it caused me so much anxiety that I needed counselling to deal with the potential guilt. I was so fearful that they would have to live with this virus and its stigma that it took me three years to work up the courage to have my children tested. They were free of the virus, but it has never left their lives. I knew that I needed to get treated, not just for me, but for the sake of my children. I didn’t want them to grow old enough for me to explain my illness. In November 2011, I started on a trial therapy based on interferon. I lasted 12 weeks until I ended up in a psychiatric unit with anxiety, agitation and many other lasting sideeffects. As soon as I had the first interferon injection, I had to lie down. Since then, I have not been able to stand again without the help of morphine. Interferon-
based treatment has given me countless debilitating after-effects and has not only ruined my life, but the lives of my husband and children.
SALLY AGED 58 BRISBANE QUEENSLAND
It feels almost hopeless at this point that I will be able to find a cure. I feel like my body is shutting down and the combination of progressing hepatitis C, its co-morbidities and the lasting after effects of interferon are destroying my life. I used to be an actor and writer, now I struggle to even look after myself despite being a social worker. I am so scared of what the future holds. For my family, a cure would mean everything. Looking back, I feel like I should never have attempted treatment because of how much it has changed our lives. I was living a very happy life with very happy children – interferon-based treatment changed all of that. I feel almost hopeless; I don’t know whether too much damage has already been done. I need a cure for both my hepatitis C and the damage the interferon-based therapy has caused. My story is an incredibly sad one. But there is always a chance for a cure, and that is what I desperately need.
A cure would free our family from the anxiety that has been crushing us for the past five years. Most importantly, it would mean getting my happy, confident, strong and inspirational mother back. Nobody deserves to suffer in agony daily when there is a cure ready and waiting.
Ben, Sally’s son
42 TOGETHER WE CAN: SEE OUR FUTURE
This was endstage liver disease, I was dying JOHN IVKOVITCH AGED 65 CAMPBELLTOWN NEW SOUTH WALES
Looking back, my memories are shrouded with sickness. I was multi-infected with hepatitis A, B and C and D and had been living with some form of viral hepatitis for 50 years. For decades I had lived with hepatitis B, managing to live my life as I wanted; but in 1992 I was diagnosed with hepatitis C. Within weeks, the virus brought me to my knees. Back then, there was hardly any knowledge of the virus, little support, and few treatment options. I realised then and there that I needed to get rid of my hepatitis C, so I became one of the first people to trial interferon in Australia… and I felt like I was going to die. I was told that the chances of interferon working for me were pretty slim, but I was keen to try. I was so desperate to be free from hepatitis C that I harassed my doctor to take blood tests at least once a week hoping to see the virus whittling away. For eight months I endured interferon treatment and its vast number of side-effects, but the virus won out and I had failed to achieve a cure. More importantly, the unsuccessful round of treatment affected me mentally. Thoughts of suicide were constant – there were moments when I came dangerously close to ending my life. Interferon completely distorted my thinking processes and how I communicated. I couldn’t
even explain to my doctor how I was feeling. It was a terrible situation – I don’t want anyone else to go through that. After that time my health deteriorated rapidly. I suffered extreme ascites where approximately 22 litres of fluid were drained from my body in a 24-hour period. My bodily functions were closing down. I was reaching the stage where I would either not know who I was or experience periods of unconsciousness. This was end-stage liver disease, I was dying. A liver transplant saved my life but the virus was still there. The transplant gave my body another chance to fight the virus and it did – all by itself. Doctors still can’t explain it; but after the transplant, my body fought back and my immune system somehow purged the virus. It’s a medical miracle. When you’ve lived through a liver transplant, everything else seems easy. You suddenly realise that what people normally describe as a big deal, such as buying a house, means nothing. Being alive and experiencing every day is the greatest thing there is and everything else pales in comparison. I am just so grateful that I am alive.
43 TOGETHER WE CAN: SEE OUR FUTURE
I’ve spent the last 18 years looking after my body and my mind. Despite everything that has happened and despite being ill, I have worked really hard to get my health back into shape. One of the most important lessons I’ve learnt is that illness itself is like combat training. Illness, tragedy and misfortune are there to teach us the importance of life. I’ve discovered how incredible the human body is – the way your body deals with trauma and rebuilds itself is unbelievable.
My father’s life being extended after a transplant has been the greatest gift my family will ever receive. It has given my son an opportunity to have a grandfather in his life and learn life changing lessons that only a wise man can teach him. I can’t be more grateful for my father, best mate and mentor being around to spend more time with us that can never be replaced. Jonathon, John’s son
We all struggled trying to help my dad, watching him slowly die in so much pain. It was a very sad and dark moment in our lives. I do believe in life, things happen for a reason. Our family was really blessed to see our father have such a successful liver transplant which arrived at his last moments. I am extremely grateful to have my father around and for him to be in my children’s lives. He is such an important role-model and I thank everyone who was involved in this outcome. It’s amazing to see how fit and active he is now and it makes you really appreciate every day you have with your family.
Latinka, John’s daughter
44 TOGETHER WE CAN: SEE OUR FUTURE
The waiting and uncertainty is killing me slowly TAMMY WATERS AGED 48 LATHAM AUSTRALIAN CAPITAL TERRITORY
“Shit, I’m going to die,” was the first thing that came to mind when I was diagnosed with hepatitis C. In that moment, I had no idea what to expect because hepatitis C was a horrible sounding virus that I put into the same category as AIDS. To me, it meant that I was just given notice that I was about to die. From that moment onwards, I have suffered heavily from depression. I knew close to nothing about hepatitis C when I was diagnosed, so I put all of my faith into the liver clinic because they are the supposed experts on this condition. However, I’ve been told there is nothing I can do but wait for new treatments. Supposedly, ground-breaking treatments are on their way and I just need to hang in there until they’re available. Because my liver is not in the worst condition, I am not a priority for treatment. However, I’ve been waiting for nine years. I don’t know how much longer I can hold on. Living with this virus is horrible, I want to be able to live a normal life without being stigmatised and dragged down by its symptoms. There are people who avoid using objects that I have touched simply because they think the virus will be passed on to them. Even though I know there is a very slim chance I would pass the virus on to my granddaughter, it is always in the back of my mind every single day when she is around me. I am hyper-aware of my blood coming into contact with anyone and I worry about passing it on to family members. I know that life would be so much better for my family if I could access a cure. The virus has given me insomnia and makes me really bloody tired. My body aches and I get exhausted easily so I can never be as reliable as I would like to be. It would
change my life immensely to be cured; I would have more quality time with my family and even qualify for life insurance. I don’t want to wait until I have cirrhosis or liver cancer to be selected for treatment. I keep being told to wait but who knows how long it will be before new treatments are available. The waiting and uncertainty is literally killing me slowly. I look forward to living life without stigma and discrimination, to living life where I don’t have to worry about passing this virus on to someone else and to know I will wake up in the morning not aching with only having had a couple hours of sleep.
It plays on my mind that we may lose Mum earlier in life because of hepatitis C. Mum is the glue that keeps our family together and we don’t want to lose her. Jaryd, Tammy’s son
45 TOGETHER WE CAN: SEE OUR FUTURE
I spent 30 years believing there was no cure I had spent more than 30 years living with hepatitis C. For the majority of that time, I was led to believe there was no way to be cured and that my health was just going to get worse. I saw a lot of doctors during this time and the answer was always the same – ‘There is nothing we can do right now’. In 2009, I was told my hepatitis C could be treated… I struggled to believe it. I had been told all this time that I would just get worse until I died. This news changed my life forever. Before treatment, I couldn’t eat, I was always lethargic and I had frequent bouts of depression. Don’t get me wrong, the treatment was horrific – I felt like I wanted to die every day. The effects were more mental than physical and depression cast a dark shadow over me for months on end. However, the outcome was worth it. Tests showed the virus was undetectable in my body. I couldn’t comprehend being cured or what this meant for me at the time, I was still so mentally fragile from the therapy. It took me a really long time to recover and get my head around finally being cured. After 30 years, I was free. I have started a new chapter in my life. I have more mental and physical energy, I now spend my days quite active without needing to rest, and I can share my experiences with other people who are confronting hepatitis C. There is a huge difference between how I felt then and now – I used to feel separated from society; today I feel part of the world. There were times when I would go to the hospital or dentist and dread having to tell them that I was carrying the virus. The reaction was never pleasant. You feel segregated, as if you have this dirty secret. You feel like there’s no point in doing anything if there’s
a wall in front of you everywhere you go. Ambition and motivation drop away and you reconsider getting involved with anything since you end up being too sick to do it in the end. There is always that fear that someone will find out and you’ll be treated differently. Nobody likes being alienated, especially when it’s because of something you did 30 years ago. Now, I can live again. I am free from the chains of hepatitis C. Finally, I am cured.
I supported Francis through his hepatitis C treatment of 44 weeks. There were many times I thought he would not make it through. Observing his mental state and continuing to support him was a challenge to say the least. Looking back, it was a horrible experience for both of us. I am glad it was a success. Michelle, Francis’ nurse and friend
FRANCIS CONNOLLY AGED 50 COORPAROO QUEENSLAND
46 TOGETHER WE CAN: SEE OUR FUTURE
Publishing details TOGETHER WE CAN SEE OUR FUTURE Published by Hepatitis Australia PO Box 716, Woden ACT 2606 Australia Tel: +61 2 6232 4257 Fax: +61 2 6232 4318 Hep info Line: 1300 437 222 (1300 HEP ABC) Website: www.hepatitisaustralia.com
Copyright ÂŠ 2015 â€“ All rights reserved. Any logos and trademarks used are acknowledged as the property of their owners. ISBN No: 978-0-646-93896-7
The opinions expressed in this book are entirely those of the storytellers, not those of Hepatitis Australia. Nothing in these stories is intended as specific advice, and anyone reading these stories should seek their own medical advice about treatment.
47 TOGETHER WE CAN: SEE OUR FUTURE
AbbVie is a proud supporter of Hepatitis Australia. AbbVie has provided a grant towards the development of Together We Can: See Our Future. The views expressed within the book are those of Hepatitis Australia and the contributors and may not necessarily reflect the views of AbbVie.
TOGETHER WE CAN SEE OUR FUTURE
More than 230,000 Australians are living with hepatitis C, yet only one per cent of these people currently receive treatment each year. It is almost impossible to combat this heavily stigmatised condition alone, but Together We Can make a difference. Together We Can: See Our Future encapsulates the personal stories of a group of Australians who have been impacted by hepatitis C and details their fight to break the chains of stigma and cure the virus that threatens their health and well-being. These stories are being shared in the hope of reducing the number of Australian lives burdened by, and lost to, this insidious condition. Nobody should be alone in the fight for a future free from hepatitis C. Together, we can lead Australia into a new era of prevention, treatment and triumph.
Published on Jun 10, 2015
There is a deep stigma surrounding hepatitis C, and this factor alongside its ability to go undetected or asymptomatic for many years has co...