These are the stories of Australians living with or affected by hepatitis C. They explain in their own words how the wait to access new medicines to treat and cure hepatitis C was affecting them and their loved ones and what a cure would mean for them.

Rebecca's Story (NSW)
I have cirrhosis of the liver and was recently admitted to hospital with ascites. Waiting is cruel. I would have currently received treatment, but as I have Genotype 4, my specialist could not even begin a treatment as I don't qualify. I hope people read this carefully. Genotypes are instrumental in the new treatment, and no one wants to deal with genotype 4. I am probably dying and am waiting for access to this medication. I've no idea whether I'll respond to the new treatment - I'd like the chance though.I'll always have cirrhosis but I may negate the onslaught of hep C. I'm desperately anxious that this legislation is passed and then myself and others will have that enviable state of fighting a possible cure for this insidious disease. I may live to meet my first grandchild in April 2016!! I may, with access have a chance to live a normal life-span. I don't drink, have given cigs. away and am trying to live in a wholesome way, so my choices have merit. (21 Dec '15)

Jayne's Story (Qld)
My son is a brilliant Con. of Music jazz musician who was grade a student school captain and high achiever. He didn't succumb to hard drugs until in his mid 20's. When he sought help he was described as a person who had support and 'would get over it'. Over 5 years he spiraled and lost everything and neatly his life. My son cannot do current medication available due to his drug induced psychosis. He has been drug and alcohol free for 9 months but still is at risk with current Meds. (18 Dec '15) 

Neil's Story (Qld)
My life is on hold, since trying the old treatment & it not working I have been just existing from day to day, I am 51, I should be living life to it's fullest instead of waiting for a treatment that will cure me, release me from the stigma, fear & uncertainty that is my world. To be cured....I sometimes dare myself to imagine my life without this virus, to be free to be me, to not be afraid when I meet new people because I know I will have to tell them & explain. For now I just live in hope, it's so frustrating, to be so close, to dream of a new life without Hep C. (19 Dec '15)

Kate's Story (NT & USA)
It's awful not knowing whether death or a cure will come first. Also, being tired all the time. It's hard to active with your children and family. Going to work every day seems impossible. It is CRIMINAL to make people wait for it to become affordable. In the USA, I took Harvoni® and I am cured after 20 years. My liver hurts sometimes. I wish I could have been cured sooner, but I couldn't tolerate the other drugs. Having access to the new treatment gives me hope that I will live longer. (17 Dec '15)

Ros's Story (Vic)
Hepatitis C was picked up in my pregnancy blood screen. I don't know how or when I was infected, therefore how long it has been in my body. Over the years, the impact has been minimal except the knowing; the worrying about inadvertently infecting my husband or son (who I'm yet to have tested), the shame and stigma attached to the disease meaning only my very inner circle knows about it, the worry that one day it might flare up or a test result will come back showing advancement of the disease. As I am the breadwinner in our family, I have put off treatment due to the side effects and the low success rates on my genotype. I've just tried to live a healthy life and largely ignored this sleeping disease. However, recently my blood tests came back showing quite a jump in my liver tests. So I saw my specialist who told me about the new treatments. I feel such a sense of urgency to try them in the hope I will be cured. Given the delays, I am in the process of investigating getting treatment overseas. I cannot afford to wait and risk damage to my liver, perhaps irreversible damage, and the cost of that to my health, my relationships, my son's peace of mind, and my ability to function and contribute at a high level to my work and community. What will the financial cost be to me and the public health system should my disease progress, or should I have to change my job or work hours? It is too much to consider. I simply cannot wait, and have a personal timeframe of March. Should the situation remain the same, I will look to get treatment overseas. I have no words for what difference the new treatments will be on my life or the lives of my family and friends who know about my disease. It is unimaginable relief. (13 Dec '15)

Lucy's Story (Vic)
I was diagnosed with hepatitis C 25 years ago. While the effects to date have been moderate, this condition has added greatly to the burden of living with a non-curable mitochondrial genetic disorder. I do not have formal medical evidence but HCV has definitely compounded the onset of more severe health issues. I have recently been retired on disability grounds, one of which included hepatitis C. I have an increasingly rapid downhill path to greatly compromised by hep C which could be cured. [Access to a cure] would greatly alleviate the concern about the onset of my symptoms of hep C amongst family and friends. Loved ones and peers understand this is costly treatment but cannot fathom why the long-term economic and social consequences for government and carers of delaying access to this medication does not seem to be have hit home. it is very obvious where the balance of the interests of all Australians lie. (11 Dec '15)

Anne's Story (NSW)
I discovered by chance that I had the hep c virus, when I had a blood test for something else. It was a bolt out of the blue, an awful reminder of a brief period of adolescent rebellion in the 1970s when I engaged in risky behaviour which included an experiment with intravenous drugs. After that brief flirtation I went on to finish uni, get married, get a job and generally get on with life. Half a lifetime later I am paying a very expensive price for what was a small detour in my life’s path. As others have experienced, I felt enormous shame and anxiety. After the initial diagnosis I was too frightened to return to the doctor – for any medical treatment – for some years. I did not talk about it to anybody, not even my husband. The sense of isolation and despair has been overwhelming. After years of fear I did eventually confront it and with the kind assistance of my GP I made the necessary mental preparation to attend a specialist hep c clinic, which I now attend twice yearly. I have been advised that my prognosis for cure if I can get access to the new drugs is very good. Knowing that there is a treatment that will save your life and that it is being withheld is terrible. I wonder if the thinking of the Ministers for Health and Finance is that it would be better to leave treatment to market forces and personal importation, which lets our Government off the hook? I think that the stigma felt by people with the disease, and the consequential silence from those directly affected, has made lobbying for action weaker than what we see for other health issues. I am grateful to those high profile people who have admirably “come out” about it, and I thank Hepatitis Australia for the opportunity to contribute to this anonymously. hep c hangs over my life, and my husband's, as a constant source of anxiety and despair. I am the sole wage earner; we rely on my income for everything. I am also keen to become a grandparent in the not too distant future, so clearly my future health is important to me. (10 Dec 2015)

Janet's Story (ACT)
I have had hepatitis C since the late 1980's and have been lucky to live with few side effects until December 2014. In June 2015 I had a fibroscan which diagnosed F3/F4 fibrosis indicating cirrhosis, and gradually my symptoms worsened – fatigue, cognitive difficulties, pain in the liver area. I have 2 children and work full time – my partner does not have a high paying job, so I need to work. Since June, when my cirrhosis was diagnosed, I started thinking about my options to get treatment – my specialist strongly advised that I work towards getting treated within the next 12 months. So, my partner and I started thinking about the options – re- mortgage our house? Go overseas? Buy generic drugs from unregulated India and China? Wait and hope for the best…. The options are all heart breaking – all with risks and hopes attached. We decided to keep thinking about the options till December 2015 when the new treatments would hopefully be available through Medicare. In November 2015, it became clear that the new curative treatments would not become available, so my partner and I made a decision to purchase generic versions of the drugs. I researched the drug combination needed for my genotype and was lucky to have a supportive GP who wrote the scripts and agreed to monitor the effects of the treatment. I sent off the money and order form and am waiting to get delivery of the generic drugs and start treatment soon. My message to policy makers is that although the new treatments are expensive, it is much cheaper to keep me able to work and support my family than allowing me to become too sick to do so. I cannot wait and keep getting sicker. I understand that not all people can afford the thousands of dollars to buy generic drugs, and that taking generics has risks. I cannot believe that we are being forced to do this, or wait to get sicker or die. It is not often that there are medical breakthroughs that can save the lives and the quality of life of thousands of people- how long must we all wait? (8 Dec 2015)

Janie's Story (Vic)
After being told I had Hep C in 2012 after six months of struggling to feel well maintaining my professional career and my family life, I embarked in good faith on what can only in hindsight be described as the scariest darkness I have seen and I haven't had a sheltered life! The recommendation was for me to commence interferon combo treatment and as a single mum with two grown up academic daughters I lost my fantastic career, became bedridden and basically had a full chemo response for 43 weeks alone. Why alone? I come from a good solid middle class background and I think that's the problem. I just was in the "too hard" basket. Cut to lifeline phone calls, hospital admissions, daughters being sad and feeling threatened by the magnitude of my suffering and you can only imagine the difficulties. I relapsed anyway after my blood work was so nuked I had to take urgent potassium so my heart would keep ticking. Now I am a Community minded person who has given this country my very best. I want to contribute again fully. But as the years go on and my immune system is trashed and I develop more secondary issues and I sleep daily in a fog I lose all my power to change this situation that I have already given my best shot at. My family are not interested at all in even asking how I am. During treatment I received no assistance not like friends who are now well but had a brush with cancer. I'm sick. I'm tired and sad because I had built a fantastic life and for four and a half years despite the treatment I did try which failed me and left me to rebuild my chemically scorched body the Government are withholding the one medicine that can turn this around. As to the stigma issue that's something that really has to change too. It's breaking families and lives. My circle of safe communication is really only a hand picked group of friends and my children. It's just not worth the trouble. I have been called all sorts of awful things because my illness was disclosed. Suffice to say I am very careful these days. I lament for those who are not as mentally strong, who are worn out even more than I am. Its not an easy life. I just deserve to be me, not sick. I'm so unwell and want to be bouncy with energy like my friends and family and be safe and feel safe again. The ripple effect is obvious. I want to participate as a professional again and serve my community. I want to be free to make choices again without my feeling sick blocking the smallest things. Oh, and not to worry about infecting others and constantly carrying Dettol wipes and band-aids just in case and not living on heaps of tablets and being terrified all these new benign tumours are going to turn nasty and seeings as I don't even drink I may have a glass of champagne! (8 Dec 2015)


Rosie's Story (Qld)
The impact the wait has had on my myself has been massive the side effects of this disease and the chronic fatigue I feel daily has limited my quality of life. My children don't know how to help and coping has been different for each of them. They have not been able to come with me to appointments with they as they are too distressed. They each have seen the change in my energy levels and the depression I feel daily. Because of the stigma attached we are all limited to who we speak to about this. So we carry it around between us. I did not get this disease from a work related event. The tiredness I feel is overwhelming and I have no energy to do the basic things most take for granted. I can no longer work due to my health so my whole life has changed and my children's also. The difference this new treatment will bring will be a new life without death hanging over my head. When you live your days knowing they are numbered its hard to be positive and to know there is a treatment and cannot access it yet is frustrating. To be able to be free Hep C is something I look forward to like winning the lottery. (2 Dec 2015)

Tammy's Story (ACT) 
The wait for affordable treatment is slowly but surely killing me. I am a single mum with 3 kids and a grandchild, the impact of this is that im stressed all the time, upset a lot about dying 20 or so yrs earlier if not treated. I am constantly worried about passing on the virus to my kids and especially my granddaughter. I don't do a lot and miss out on a lot with my family as im always fatigued and aching. I don't know what a good nights sleep is, I'm lucky to get 4 hrs a night. I don't go out very much because of the stigma of the virus and I'm always tired. At the moment I have no quality life. My kids would have their active mum back. HCV has also been responsible for me being inflicted with fibromyalgia and my doctor thinks if I get treatment for HCV the fibromyalgia my go too. Treatment will mean my kids will have their active mum back. We will be able to go on holidays as now I don't as I'm always sick or tired. I may be able to find myself a partner as now I'm on my own as I don't want to have to go through the embarrassment of disclosing my HCV status. It would mean my quality of life being so much better and my kids may have me around a lot longer. My whole quality of life will be improved. I get so down and depressed about all of this that I take to my bed for days and wont see anyone. It means a happier, longer and healthier time to live my life and die when I'm older not in a few years. (3 Dec 2015)


Lyn's Story (Vic)
I am desperate to be cured of this disease which is like living with a death sentence hanging over my head. It impacts every aspect of my life both physically, emotionally and socially. My husband and two sons want their mum and partner back again. (19 Dec '15)

Shane's Story (Qld)
Firstly, I have developed an extreme case of Rosacia, which is triggered off by the hepatitis, needless to say that living with an extremely red face is not very nice. I have eliminated all things that increase the problem - ie. zero caffeine, don't smoke, drink alcohol or take any drugs what so ever but its still fairly red. Getting rid of the hepatitis will definitely improve my quality of life as I know the redness will dissipate once its gone. secondly the chronic fatigue issue is crippling. I am trying to study, hopefully for a career and the fatigue makes it so incredibly hard...Would really like to have my full life force back and wonder how that will feel to have normal energy again.(18 Dec '15)

Phil's Story (Qld)
Diagnosed several months ago with cirrhosis has forced my mortality into the forefront of my daily life. Co-infection with HIV meant I never expected my daily challenge would be from liver dysfunction. General wellbeing is hovering around 80%, should I make plans for the coming week, will my sweats and lack of energy dictate how my daily plans pan out. As a result of demographics my isolation and self worth have taken a decline in my emotional state. My loving partner is supportive, however his fears of an outcome waiting for treatment being on the negative weighs heavy in our daily lives. We want to hold hands in our 70's and beyond. Access to treatments would open up possibilities for a much brighter future, planning ahead for time away. A bucket list of realistic ticks would be a step closer. I had always expected HIV would be my darkest demon, however HCV is the overall darkness in our lives. I'm an independent character that strives to care for others, knowing how my daily energy levels and well being could benefit would allow self worth. PBS scripted treatment would make a huge impact on our lives. (16 Dec '15)

George's Story (NSW)
I was diagnosed with hep C in 2010, I make only 1 operation when I was 8 years old, which means I am living with hep C for around 30 years and I follow up with the hep C clinic every 6 months, and I am afraid from the bad new that I maybe given at any time. I am worried to have kids, don't want to have kids, and in 1 year or so, their father dies or goes into a long term sickness as a disabled man. I prefer to die alone better than others suffer because of my illness. The new treatments success rate is over 90% which will increase my chances of getting a cure out of my sickness. (14 Dec '15)

Terrell's Story (SA)
I started the new treatment in November 2014 and was informed right before Christmas 2014 that I had cleared the virus. That is with the three month simeprevir (Olysio) treatment. I still had to do eleven months of Interferon and ribavirin which all ended a month ago October 2015 and I am still cleared. (12 Dec '15)

Antonio's Story (WA)
It has forced me to pursue the importation of a 12 week course of generic medication. [Access to treatment and a cure] will make an enormous difference to thousands upon thousands of people. Renewed health and energy, not contagious anymore, no cost for liver disease or cancer, no early death! (11 Dec '15)

Gary's Story (Qld)
My loved one's are worried they may contract Hep C. I cannot apply for certain positions because of Hep C and therefore it effects they way I am able to provide for my family. I am basically stuck in the low paid position I have! [Access to treatment and a cure means] the worry of contracting Hep C will disappear and with new employment opportunities I will be able to provide for them better. (10 Dec 2015)

Kathryn's Story (Vic)
Hep C is the one thing in my life, that is holding me back from living my life to its full potential. I am a well educated and passionate young person who could be thriving.. but no matter what efforts I put in, and no matter how healthy the rest of my life is, the reality is i'm too tired to socialise, I am exhausted after a 3 day working week, and despite my best intentions, my day to day plans are often thwarted by feeling generally unwell. Constantly. Knowing there is a medicine that could change this for me, and for others like me, but knowing it is also currently out of reach, creates a deep sadness and frustration within me. 12 weeks! In just 12 weeks I could put all of this behind me. The years of being both physically unwell, and also the years of battling the stigma associated with Hep C, could be put behind me. My life is just waiting here for me to be well enough to live it! (9 Dec 2015)

Amanda's Story (Vic)
I have been waiting for a cure for Viral Hepatitis C for more than 30 years. It is beyond frustrating to know that there is now a cure, or drugs that represent a very high chance of a cure, and that they are being made available in every other developed nation as well as over 90 developing nations at an affordable price, but not in Australia. Shame ! While remaining relatively symptom free and well it has still placed a huge strain on me and my family knowing that at any time the virus could start impacting very badly on my body. Six months ago I learned that this has indeed started happening and my need for a cure is greater than it's ever been. I now have advanced fibrosis and possible cirrhosis. Four years ago I participated in a drug trial that did not work for me. This was hugely disappointing. Since learning that I am now very much in the 'danger zone ', I have been doing all I can to campaign and advocate for the listing of these new drugs on the PBS, both for myself and on behalf of the 250,000 + Australians who also suffer from the virus. Out of desperation I have been forced to try and source the new drugs from overseas. I think this is shocking that I and many others are now having to resort to this. The cost and risk is far greater than if the drugs were available here but nowhere near as great as travelling to the UK, USA or Canada to be treated which is enormous and far beyond what is possible for most people. It is hard not to feel resentful and extremely disappointed with those politicians who are responsible for this situation, not to mention the drug company whose greed is breathtaking. As well as impacting so negatively on sufferers and their families it also impacts badly on all the wonderful physicians who want their patients cured but are helpless to prescribe the new meds. Being cured of Hepatitis C would be life changing for me in the best ways possible. It would transform my life not to be constantly in a state of worry and apprehension about what this disease is doing to my body and how it will affect my future. It would be a great relief to my family who are constantly worried and concerned about my prognosis. On a far larger scale access to new treatments for all sufferers could ultimately eradicate this epidemic altogether in Australia and the enormous burden it places on our health care system. It would spare the thousands of Australians who are newly diagnosed each year going through what I have been through. The vast amounts of money and energy that go into monitoring and testing patients, providing medications that are mostly not effective and even transplants, lost work hours etc etc etc could be channeled into finding a cure for other diseases for which there is no cure. Both myself and my family would be overjoyed by this prospect. (8 Dec 2015)

Lynette's Story (Vic)
I was diagnosed in February this year. No idea how or when I contracted the virus. 18 month wait at the local Liver Clinic. Took matters into my own hands and arranged to have a Viral Load test, LFT and Fibroscan. I did not accept that I would have to wait for goodness knows how long to have the new meds approved here. I'm currently being treated with generics with a nil viral load after four weeks. (8 Dec 2015)

Penni's Story (SA)
Three of my closest friends and ex-partner/father of my children have died in past 2 years because valid treatments weren't available to them in time. My health is OK so I continue to wait. I'm not sure how much of my health is impacted by hep C. But to cure myself before anything gets any worse seems worth it to me and the new treatments are a green light; i.e. go ahead because they're such an improvement on prior options for treatment. I work in the sector and people are much more motivated, keen and interested to undertake the new shorter term, faster acting treatments which pose less side effects, less ordeal, less harsh impact on life. (8 Dec 2015)

Elle's Story (SA)
With each day that passes my health deteriorates. I have been living with the hepatitis C virus since 1998. Since being diagnosed, the virus has impacted negatively on my relationships with friends, family & partners, I lived with the fear that I could pass the HCV on to my daughter if she accidentally used my toothbrush or razor. I have lived with stigma and discrimination from medical professionals all too often. I have tried to put it all aside but the symptoms are becoming more and more difficult to ignore. Each day is a struggle, Monday to Friday, I am exhausted just getting ready for work, I push on through the aches and pains, the frustrating brain fog and relentless fatigue. The weekends are spent isolated as I don't have the energy to socialise with family or remaining friends. My world seems to orbit hep C. (It took me almost 5 minutes to write that last sentence as I couldn't find the word in my head that I wanted to use, in the end I had to use the internet). Everything is a struggle, the available therapy is not an option for me. I hide my struggle, people don't have sympathy for what they see as a self inflicted wound. But, I have a 99% chance that my health will improve when I am able to access the long-awaited treatment. I have witnessed the transformation in others around me that have been treated on trials of the DAA Treatments. I look forward to getting my life back and improvements in my mood, energy level and concentration span. All of these things will allow me to be more effective in all that I do, reconnect with friends and enjoy my relationships with my family that have deteriorated along with my health. (7 Dec 2015)

Ingid's Story (NSW)
I have been told I am close to cirrhosis. So every time i feel ill I think oh no is this the beginning of the end. So stressed and the fear of infecting other people. Also my work, when I get low I find it hard to keep working. We feel like I am sitting on a time bomb. Scary! (2 Dec 2015)

Heather's Story (Qld)
Knowing that an effective treatment is available but not being able to access it means that I, and those close to me, are living in a state of low level, but constant tension and anxiety. So near, yet so far away!  It [access to treatment] will greatly remove all anxieties - living with the constant shadow of potentially contracting cancer when you know there is a cure casts a dampener on all aspects of life. (2 Dec 2015)

Marg's Story (ACT)
After living with chronic hep C for 34 years I'm in the Liver Danger Zone. The possibility of successful treatment seemed like a miracle! I allowed myself to hope that I would be able to receive treatment. I already had a healthy lifestyle but ramped things up to be as fit and healthy as possible, to maximise my chances of cure. I've waited months for appointments and tests and done them all. Every day I check for news that the government has agreed to list the new medications as recommended by medical experts. It's becoming more and more stressful and hard to remain hopeful with no information from the government. I hope that successful treatment would mean that I'm not tired all the time. That I'm not vaguely nauseous or worse all the time. That my skin and eyes are not dry. That I have more energy. That I can go out to a concert at night without being wrecked for a week. That I not worry every time I accidentally cut my finger cooking. That I can have visitors and grandchildren stay without being anxious. That I not live with this constant feeling of contamination or the stigma of a disease so linked with drug use, even though I was infected by a blood transfusion and have never used drugs. (2 Dec 2015)

Helen's Story (Qld)
I have lived with the spectre of Hep C hanging over my head for just over 20 years now. My chronic disease is now impacting on my mental, physical and emotional wellbeing. I have kept my illness from my children in the hope that an effective treatment would bring about the cure I so desperately now need. A cure would be the answer to my prayers. I would finally be able to live my life to the full without wondering when my health was going to fail and bring about my premature death. (3 Dec 2015)

William's Story (WA)
Until 6 weeks ago when I started treatment my family and I were not planning much for the future....  I'm very fortunate and received the new anti viral drugs 6 weeks viral load has gone from 1.5 million to nil and into longer have hep c for the first time in over 30 yrs...every sufferer in Australia should have access to theses drugs ASAP as the assault on our health system will be catastrophic in the next 10 yrs dealing with people suffering liver associated not introducing these drugs to the PBS it will cause immense hardship and just doesn't make sense.... (4 Dec 2015)

Heather's Story (Vic)
Knowing I have hep c is on my mind all day every day. As I said to the specialist today 'it's doing my head in!'. I am tested every 6 months and am still ok but do worry that as I get older that could change quickly. My condition does not impact on my family or friends as I have chosen not to tell them. There is a stigma around hep c and my life has changed since I was infected over 34 years ago. I also do not wish to worry my family when there is nothing that can be done currently. I have a script in my bag that I could use to buy the drugs overseas but am hoping that PBS approval might occur by April. For me it would be like a huge weight lifted and a clearer long term future. (4 Dec 2015)

Cameron's Story (SA)
Knowing there is a potential cure at a cost of $100,000* makes life frustrating more for my family than me. [Access to the new treatments would mean] being able to get on with life not wondering if Hep C will kill me at some stage of my life. (22 Dec '15)

*Note: The 1/3/16 PBS listing of the new medicines will mean they cost $37.70 for general patients or $6.10 for concessional patients.

Lynne's Story (SA)
I have had Hepatitis C for 20 years, did not clear with the old treatment even though I am genotype 1. I have started to feel various forms of symptons, the worst being "brain fog". which makes me feel anxious. I do fell very tired on bad days, and keeping up with the housework is very draining. I would love to try the new treatment as soon as possible, so I can feel normal and healthy again. I would be able to do more exercise, think and concentrate like a normal person, and just be happy again. (19 Dec '15)

Mikayla-Jay's Story (WA)
As I age, I feel treatment is getting more important. I need to consider very seriously the rest of my life and the outcome I have at the end could quite possibly be because of the choice to undertake treatment. I think of my Liver Health Daily! My family give me full support and just want me to be healthy. I am fortunate to have only hep C to deal with after living as an addict for 23 years. Clearing the virus (a cure) would lift a great burden from me. I hope to live a longer life without hep C side effects so I can enjoy a full life and that of my families. My mother is elderly and will depend on me later in life. Planned care will take place with me being the carer. I want to be fit enough to do this and will be medically sound having a clean bill of health. (16 Dec '15)

Nathan's Story (Vic)
Its impacting my family especially my 6 year old daughter. She doesn't know what life I lived before she came into this world but if I pass away because of my condition she would suffer greatly as our bond is very strong. She's everything to me, I've changed my whole life for her and the rest of my family and myself. [Access to a cure] would mean I could live without pain and stress. I worry every day thinking I'm going to die. It's really scary! I work hard to provide for my family and these treatments would give me my life back. (11 Dec '15)

Dee's Story (Vic)
I was told I had hep C in 2001. I thought I was tired from working so hard and caring for my 4 kids alone. The Dr told me it was like AIDS. Well I had heard of AIDS, and I felt sick when he told me that. I asked where could I have got this disease. I had blood transfusions with the birth of my children, I had received blood products from other operations, When I was younger I had cut myself because of abuse I had endured over nearly 12 yrs. I had my ears pierced at 12 with a needle, then I constantly got asked if I had ever taken drugs! I had smoked a couple of times but it made me sick, and no I never injected or shared personal items. So how did I get it? I'm assuming from a blood transfusion of one of the children before 1985. The time I found out I had hep C, I felt ashamed, I didn't know and still don't know how I got it, I lost friends because I was afraid I would give it to them somehow, my children suffered because I had become so meticulous in cleaning, making sure my clothes were not washed with theirs ,my dishes, just about anything, I drove my children up the wall with my actions of being afraid I'd be the cause of their early deaths. I eventually got myself educated in what hep C was and the possible ways I could have contracted the disease. My Drs didnt seem to want to tell me anything other than after the failed attempted treatment of interferon and some other drug I was now waiting for new treatments. That was 12 yrs ago. Now I have 6 monthly visits, scans, blood tests and the same story each time. Nothing has changed but you need to have more tests, gastroscopy, bone scans, it has effected my heart, my eye sight, my ability to walk to far, my body aches, I'm tired all the time, I get dizzy spells and if I'm given medication for one thing then on seeing Drs at the hep C clinic, I'm taken off them because I could bleed to death. My kids have lost so much of me, I'd play footy with them go swimming long walks and holidays. During the last 12 yrs I have slowly stopped doing each one with my kids and now my grandkids. I feel ashamed because I have this disease and I dont know how I got it. The kids were told I'd have a shortened life span, it was scary at first and now I guess they see me as always being sick, I have even lost friends because I'm not able to do what I once did. We all suffer from loses, what upsets me so much is that when I got cancer they  took my kidney out and no one mentioned it again. This just seems to go on and on and I feel like no one cares less if I die or not. My Drs don't even see me as a person I'm just a number. I'm waiting to die and I have to ask in this day and time ...why am I! I would give or do anything to be able to live to see my children married and have their children. I feel will never see the new treatment, I have cirrhosis of the liver, nothing has changed for me, but If I could be cured who wouldn't want to keep living. My family wouldn't have to live with the fear of every time I get sick is this it! I wish with my heart that for those that do get this treatment they will be cured. This is a disease that has been around for a really long time and one would think that the Government would save money by allowing treatment to be available to all persons with hep c. This treatment can save lives, save people from waiting on waiting lists either for a transplant, or other treatments that they would not need if free treatments could be available to them. It never ceases to amaze me why the Government cant see spending money to save lives is beneficial, rather condemn them to a life of misery and families losing loved ones for no good reason. (10 Dec 2015)

Claire's Story (SA)
I know I would LIKE to access treatment & the current treatments are not possible for me (I have 2 young kids, no family support & I work full time - my partner also has hep C). Whilst it is 'business as usual' it would be so nice to know. It would give me some certainty about my health - something I've not had since I was diagnosed with Hep C in 1996. My partner & I both have it & we have young children & our families all live inter-state. If I get sick, I have no help. I need to work full time to pay my bills. Again, I cannot get sick & not work. I need to role model how to have a good work ethic to my boys - how do I do this if I am sick? This would all change if I could be free of hep C. (9 Dec 2015)

Sam's Story (SA)
I have been living with the virus for 35 years and have advanced fibrosis. I am currently running a family business and manage to cope through the day. I have tried the old treatment but unfortunately did not work for me . My specialist has told me that I am in the danger stage of my livers condition. I have been in the work force for 43 years and have paid my taxes I think the government should act quick especially for those who are in the danger zone . Financially it would benefit the tax payer in the long run. I employ 2 people and I would like to continue to do so. Accessing the new treatment would give us hope and would take a big weight off my family's shoulders. We're all waiting for the announcement . (8 Dec 2015)

Dan's Story (Vic)
Every day seems to be a health battle, some days good but a lot of days bad. I run two businesses but it's getting harder & harder to find energy. I need to take naps during the day as I get tired easily. I've worked hard all my life, bought up a family, keep as fit as I can. But, please help as life with hep C is a tough one with fly like systems, aching joints and disturbed sleep. I'm tough by nature and get up for work 6 days a week 'but it's getting harder & harder Please help me heal! [Access to treatment] would make a huge difference in my life. I can't imagine how good I would feel be free of this cruel disease. (8 Dec 2015)

Gary's Story (Vic)
I have had Hep C for 8 years now. I was told this after coming out of an induced 9 day coma which they put me in when my liver basically exploded. Initially I was happy just to still be alive, but thinking that I only had a very limited time basically to get my affairs in order and to prepare my kids and Grandkids for the inevitable. A few years later I managed to complete the pegulated Interferon treatment which is very hard at times and with many side effects - such as developing female breasts and suffering almost constant mood swings & nausea. After the most miserable year of my life the treatment actually worked so suddenly I could see a future with me still in it. My family and I were ecstatic, and then 3 months later I was told the Hep C was back, sorry. I could not fail to notice that a large number of my fellow sufferers did not manage to complete the course. Not surprisingly, I don't see any familiar faces at my 6 monthly clinic visits - it feels like I'm the last of the Mohicans. 4 Years have passed since. I keep showing up every 6 months for my blood tests, ultrasounds and gastroscopys and every time I go to hospital at least 20% of me is ready to expect the worse ie; sorry you have liver cancer. At my last clinic in October I was told to expect that new treatments to be available before my next appointment in March and that I would be a perfect candidate for the new treatments. Finally a future with me in it, and now I find out that it's all off. To make it worse nobody knows if or when the treatment will be available but we can be certain that the government is more concerned with balancing budgets than supporting people in dire circumstances.
I have dreamed of being Hep C free for 8 years now. 8 very lonely years as I have not had a partner and as a Hep C sufferer I reason that I just can't take the risk of infecting anyone else. I am eternally grateful to my children and my grandchildren for the almost unlimited love and support that they give me. In the last few months I have met someone who I could most definitely see a future with. She is aware of my disease - and is fully supportive of me. She accompanied me to my last Liver Clinic and heard the great news that a probable cure was coming and that I would be a prime candidate for the new treatments. We were dancing in the carpark, we were so ecstatic that a huge weight had suddenly been lifted from both of us. To break it down to it's most basic; The new treatments offer us an almost limitless future, but if they don't hurry up - it won't matter to me because I will be gone. Just another statistic! (3 Dec 2015)

Kate's Story (Vic)
It doesn't affect me personally anymore, yet I imagine it would be quite depressing waiting for the new meds to be approved for the PBS. I did it the (very) hard way on triple treatment with ribavirin, interferon and boceprevir. All highly toxic and dreadful side effects. I still get irritated, itchy eyes most days and I fear this side effect is permanent. I finished treatment over a year ago. I had to have a blood transfusion as my blood count went too low during this (two years!) treatment. I a barracking for the new drugs to be approved ASAP as I do not wish anyone to go through what I did to be cured! I wouldn't wish it (triple treatment for a year) on a dog. It was grueling and a very depressing time for me. I am proud of myself for seeing it through. I encourage older people to seek treatment as soon as the new meds are approved . Liver cancer is no fun at all....  (4 Dec 2015)

Kirsten's Story (Vic)
I'm 57, I sleep a lot and cannot work. So I guess the impact is primarily financial. With a cure I believe I will have more energy, take less meds for depression and be able to be involved in my own and my loved ones lives. (4 Dec 2015)

Caroline's Story (SA)
My husband has hepatitis c and has now developed cirrhosis of the liver, The wait has been agonising and has placed a huge psychological and physical strain on my husband which has also impacted on our family. A cure would be fantastic so we can move on and not have this illness hanging over our heads like a ticking time bomb. We all love my husband dearly and I want our children to know that the Australian government has done the right thing knowing that the treatment is available. (4 Dec 2015)

James' Story (Qld)
I, like so many others suffering from Hepatitis C infection feel the stigma attributed to this disease. In my case I'm not sure why, as I contacted the virus through no fault of my own when undergoing a blood transfusion in 1977. ( I often wounder how many other Australians who underwent blood transfusions during this period prior to screening for the Hep C virus are also infected with Hep C and are unaware of it). Now 38 years on, my condition has advanced to cirrhosis and I live with increasingly high viral loads. A failed result in previous drug therapy has added further to my frustration and my ability to live this this time bomb ticking virus that I endure. During my last visit to my liver specialist my doctor gave me hope in relation to new generation drugs that were anticipated to be soon added to the PBS giving me potentially a much greater chance of riding the virus from my blood and ongoing damage to my health. My wife, my family, and myself are pinning our hopes on these new drugs becoming available under the PBS. They offer hope, and a high chance of cure. What more can I say! It would be so wonderful to approach life with the expectation that I will live a healthy life without the fear of what the consequences are likely to be without successful drug therapy. Time is of the essence because time is ticking for all of us affected, including our loved ones. (5 Dec 2015)

Pam's Story (Vic)
My family have had to take on the burden of this disease in so many ways. My health has been poor over the last ten years. I have been unable to work and have been on a disability pension. My children and husband have been very supportive but have all had there lives limited in some way by my illness. I have been very lucky in that my hepatitis was life threatening and i was able to access medication through compassionate access to treat. If i had been unable to have this access my liver could have decompensated by now and the likely of a recurrence of cancer was high. I am incredibly grateful that these medications have given me a future that I may not have had if i had continued to wait. The hardest thing to deal with is that hepatitis has not left my family as one of my children was infected via vertical transmission and is still waiting for these medications to become available. At the moment this waiting seems eternal and unbearable . Having cleared the virus it is incredibly hard to live with the guilt of knowing my adult child still has the virus. Knowing that there is an almost certain cure in existence and unavailable, is just to hard to comprehend. If the government doesn't act soon we will be forced to purchase medications from overseas as our faith that they will be listed on the PBS and available for all, any time soon is dwindling. It feels so discriminatory that everyone with hepatitis C is unable to access these medications and be able to look forward to a future. (4 Dec 2015)