We stand at the precipice of a grave threat to our public health ... [Hepatitis C] affects people from all walks of life in every state, in every country. And unless we do something about it soon, it will kill more people than AIDS.
– C. Everett Koop, former US Surgeon-General
I WAS WATCHING television one spring night when the awareness that Hepatitis C was eating away at my liver came to mind. I had lived with the chronic virus for twenty-two years. The first ten years I was asymptomatic, uneducated and in denial, but gradually fatigue and other symptoms – liver pain and brain fog – kicked in, impacting every area of my life. In time, the more I learnt about Hep C, the more anxious I became. I saw specialists in various cities over two decades, had two liver biopsies, and tried various alternative therapies and supplements to manage the symptoms.
When I turned forty I made a calculated guess about how much my fibrosis (liver scarring) might have progressed since my last biopsy and figured I could well be getting close to cirrhosis. I began to come to terms with the fact that I had a debilitating and potentially life-threatening condition. I had been offered treatment before – a notoriously difficult and long regime of antiviral drugs – and, apart from one brief and disastrous attempt, had steadfastly refused. One specialist wrote down the URL of the drug company on a slip of paper when I said I had heard of serious side-effects and would need more information. When I checked out the site, the first words my eyes fell on in the frighteningly long list of side-effects were "heart attack" and "stroke". I banished treatment from my mind and decided to take my chances with the virus. I led a healthy, liver-friendly lifestyle – no alcohol and good diet – and it was possible I would, even with the significant degree of damage I had sustained, die of something unrelated.
And so, on that night late in 2005, I rehashed the story I had been telling myself for years: treatment might kill me, it might leave me with permanent disability or side effects, it might not work, I am not brave enough, not strong enough, too sensitive to drugs, too psychologically fragile, too scared. But, just as I was about to come to the usual conclusion, another voice – loud and clear – entered my subconscious and commanded DO IT. I felt a seismic shift as fear gave way to conviction and I decided to obey that voice. I walked into the office of my specialist some weeks later and announced my decision. She smiled and said, "Good."
I WAS INFECTED with Hepatitis C Virus (HCV) when I was twenty, the second time I injected heroin, shot up by an anonymous junkie I never saw again. Some weeks later I noticed my eyes looked yellow. I went to the doctor and I was diagnosed with "non-A, non-B Hepatitis". I was told nothing beyond a caution to avoid alcohol and sexual contact during acute infection. In the early 1980s, precious little was known about it. I curbed my substance abuse until the nausea and fatigue passed, then resumed my old ways with no idea the virus would progressively destroy my liver. Almost all my friends with histories of drug use are infected. It is virtually a given among inner city artists and musicians of a certain age (before needle exchange programs). Even so its portrayal as a modern, lifestyle disease is somewhat misleading.
Dr Nick Crofts, who has written extensively about the virus, notes that, although the origin of HCV is unknown, "phylogenetic modelling suggests it has been a human virus for millennia". I asked Dr Greg Dore, Associate Professor and Head of the Viral Hepatitis Clinical Research Program at The National Centre in HIV Epidemiology and Clinical Research (NCHECR) at the University of New South Wales, if this means Jesus could have been HCV positive. "I wouldn't rule it out," he deadpanned.
In the Western world, Hepatitis C is seen as the scourge of addicts: most people who contract it – roughly 80 per cent – do so by injecting drugs. The epidemic we face began last century, fuelled by the rapid rise of illicit drug use. In other countries, such as Egypt – which has the highest infection rate in the world – it is due primarily to unsafe injection practices in health-care settings. Despite its long history, Hep C was not "discovered" until a diagnostic assay for its antibodies was developed in 1989. Since then more has come to light, although the field of knowledge is so new and evolving that some of what we think we know may yet prove redundant.
Most people who contract it will have no signs or symptoms at first; around three-quarters will develop chronic hepatitis; about a fifth of those will have no liver damage or symptoms over time, while about half will develop one or both (on average after fifteen years); up to a fifth of people with chronic Hep C will develop cirrhosis of the liver twenty years or more after infection; and between 2 and 5 per cent of them will experience liver failure or cancer.
In Australia, Hep C is transmitted not only by drug users, but also by blood transfusions and blood products prior to 1990 (all blood has been screened for the virus since then), blood contact in accidents, shared toothbrushes, razors, nail clippers, tattoos, body piercing and needle stick injuries.
One positive mother in twenty is likely to transmit the virus to her child. Symptoms vary widely and many remain asymptomatic, which means tens of thousands are undiagnosed. Symptoms range from being so minor that the link to HCV is not made to the totally debilitating: fatigue, malaise, headaches, nausea, aches and pains, and liver discomfort or pain.
Many report that doctors often dismiss their complaints of symptoms. It is not uncommon to be told "everyone feels tired in the modern world", but a recent study conducted by Dr Dore established that fatigue is a real symptom of Hep C, qualitatively different to "modern world" tiredness. His study "showed that those with SVR [sustained viral response, which determines a 'cure' or 'viral clearance' following successful treatment] had improved physical and mental quality of life".
The World Health Organisation has estimated that 170 million people globally have HCV. It is one of the most commonly notified communicable diseases in Australia, with approximately two hundred and ten thousand people – 1 per cent of the population – estimated to be living with it. A NCHECR report highlights concern for particular groups: Indigenous Australians (sixteen thousand have chronic HCV) and prisoners (eleven thousand were positive out of thirty-five thousand in 2005). There is currently no vaccination against Hepatitis C, and until the late 1990s there was no effective treatment.
In the 1990s, Interferon "monotherapy" was offered to people with chronic Hep C who showed biopsy evidence of significant fibrosis (scarring); but, young, uninformed and complacent, few of us presented to liver clinics. When we did we were given only a one in five chance of success, and even specialists didn't push it. But by the end of the decade it became clear that some genotypes responded particularly well to Interferon. Another anti-viral drug, Ribavirin, was added and treatment became "combination therapy". This greatly enhanced the rates of sustained viral response (when the virus is still "undetected" six months after treatment). Those of us who consulted specialists were given a one in two chance of achieving this if we were geno 1 (the most common in Australia), or an 80-90 per cent chance if we were geno 3 (the second most common) or geno 2 (the least common). To achieve those odds, a geno 1 is required to spend forty-eight weeks in treatment, while geno 3s and 2s usually undergo treatment for twenty-four weeks.
I was told I was a geno 2 by an excited specialist in 2002 – if you have to have Hep C, geno 2 is the geno to have. But even if you have the "best" geno, the decision to undertake treatment is daunting. Current public health literature produced by the Hepatitis C Council of New South Wales lists the side-effects: flu-like symptoms, fatigue, anaemia, headaches, depression, anxiety and insomnia. Serious or life-threatening side-effects are rare, but horror stories circulate. Most of the specialists and Hep C nurses working in liver clinics acknowledge treatment is not for everyone, and don't encourage everyone to undergo it. Treatment is recommended for those with symptoms, with significant liver damage, and those who are stable and motivated.
Dr Dore says the clinics see only 1 per cent of those with chronic Hep C. There are several reasons for the poor turnout: "One is a lack of understanding, both at the level of infected communities and medical practitioners of how improved treatment is in response and cure rates. There's been the barrier of liver biopsy that was required to start treatment [this is no longer the case], and the general toxicity of treatment."
Back in 2004, I summoned up some courage and commenced treatment. I lasted nine days before I stopped, felled by a nasty bacterial infection in the first week (either due to bad luck or a plummeting white blood cell count), panic attacks and endless crying jags (having refused to go on anti-depressants prior to starting as recommended by the clinic). I limped out of the experience, more fearful and doubtful of my ability to withstand it than ever. It was another two years before I tried again, but this time I was resolved. I had spent decades resigned to living with this virus and had finally found some determination. I had a vision of the life I wanted and it did not include Hepatitis C and its burden of fatigue and worry. I was still afraid and painfully aware of the dangers and possible consequences of treatment, but I was ready to do battle.
AS START DAY approached, I mentally chanted a mantra: "The drugs are powerful but I am more powerful." I began the long process of visits to the hospital for screening and preparatory consultations with the nurses. I decided to take the anti-depressants this time, and to see the clinic psychiatrist. We talked about my previous experience, how my terror of both treatment and cirrhosis had dogged me for years. I told the psych I felt the need to face the treatment demon as much for the benefit to my mind as my body. He nodded. "It's your Mount Everest," he said.
Start day arrived. I would self-administer weekly shots of Interferon and take two doses of Ribavirin every day for six months. The drugs affect everybody differently so there is no way of knowing what side-effects will emerge, although some are more predictable than others. So, having cleared the decks of my life, I opened the fridge and took out my first shot.
Week 1: It's strange injecting myself after all these years and the irony is not lost on me. My hand holds the syringe for minutes, hesitating and shaking. I do not want to inject myself with a substance that will make me feel bad. It feels like the karmic opposite of shooting heroin: the price of those ancient highs. A few hours later my body starts aching, like an intense flu, and an odd indescribable sensation – of being no longer of and in the world in the usual way – sets in. It's as if I have entered a twilight zone, a world in which I no longer know the perimeters and in which I no longer enjoy the illusion of control.
Whether or not to do treatment is only one of many dilemmas a HCV positive person faces. Magdalena Harris, a PhD candidate at the National Centre in HIV Social Research at the University of New South Wales, is conducting a qualitative study into the experiences of people living with the virus in Sydney and Auckland. She has it, and is a board member of the New South Wales Hepatitis C Council. Her project has revealed several key areas of concern for those living with it. Harris confirms stigma and discrimination are rife. "There's a great deal of confusion around Hepatitis A, B, and C. Because Hep A and B are so much more easily transmitted, it contributes to people's fear around contagion," she says.
Stigma and discrimination foster a climate of silence and secrecy, allowing misinformation to spread. Reports of discrimination, particularly in medical settings, are commonplace because of the association with addiction and drug use. Harris says stigma infringes people's daily lives. Disclosure is a source of stress and can ruin relationships and lives. And this stress can escalate when it comes to the question of how and when to tell a sexual partner – angst not helped by confusion about whether HCV qualifies as a sexually transmitted disease. Harris says information from the United States, including the websites appearing on a standard search, suggest the virus is sexually transmitted, but she argues this is due to faulty research practices and because sexual transmission can't be entirely ruled out. But, she explains, "there have been long-term, large-cohort studies of monogamous couples not using barrier protection and none of the partners have got Hep C". While precautions are advised – such as abstaining from unprotected sex during menstruation and exercising caution in rough sex – it appears that the risk of infection by household contact, though itself low, is higher. Even so, she says, people still suffer unnecessarily. "One man I spoke to said that he'd resigned himself to never having a sexual relationship, which I found very sad."
The first few weeks of treatment were tolerable. I endured intense "flu-like symptoms" after each shot and my energy dropped, but it was bearable with scaled back activity and expectations. But soon I grew weakened by anaemia caused by Ribavirin, which destroys the production of red blood cells. Despite the anti-depressants, I was often angry and apprehensive.
Week 4: I feel like a soldier who has to sleep with one eye open and at the same time find a way to relax into this peculiar new normality, a way to make peace with the changes in my body, to surrender to the rhythm of treatment. Even though I have HCV-positive friends I feel lonely and isolated so I hunker down at home and punctuate my days with new rituals like eating small amounts of food often (to reduce the nausea) and watching Antiques Roadshow.
I KNOW SCORES of people with Hepatitis C, old friends I used drugs with, others I met after I stopped and new friends and contacts I've made on the discussion board of the Hepatitis C Australasia website (www.hepcaustralasia.org). I first visited the site when I was two-thirds through treatment and researching this article, and it became a critical source of support. The exchange of empathy and practical tips was priceless. Apart from those who visit the website, few people I know have sought treatment. They rarely discuss their Hep C, many have never seen a specialist or had a biopsy – the most accurate way of determining the degree of liver damage. Some don't even have the recommended regular liver function blood tests.
No blood test can accurately assess liver damage. A normal "liver function test" is generally considered a good sign, but it does not rule out progressive fibrosis or cirrhosis. HCV is not like cancer – there's a good chance you'll get away with it. But it's a gamble, and sometimes the dice rolls the wrong way before you even know you're in the game.
Alan Powell had a blood transfusion following a routine operation in 1986. He recovered from the operation and went on with his life. A keen sportsman, Alan also drank heavily. In 1997 he had a blood test prior to a knee operation and was diagnosed with Hepatitis C. He told his wife who reacted negatively, accusing him of having contracted the virus from an affair he'd had twenty years earlier. He was devastated by the news. Shortly afterwards, he was diagnosed with cirrhosis. As a state manager of his firm in charge of eight hundred people, he lived closeted and with no support. He read up on the virus and travelled the world seeking expert advice. At the time, the only available treatment was "monotherapy". He completed forty-eight weeks but failed to respond.
Later, he did another forty-eight weeks of combination therapy. He remained clear for six months but then relapsed. A couple of years later he was about to commence a third round of treatment when he fell ill. On the day he was due to start, he was admitted to hospital and told he needed a liver transplant. In the operating theatre the surgeon discovered his liver was cancerous. Six other people were waiting for a liver at the time Alan received his. Three of them died waiting and two died shortly after receiving a new liver. He still has the virus but experts are recommending against treatment. His new liver will almost certainly last the rest of his life since he no longer drinks. He wants to do treatment again anyway. He is determined to be rid of the virus that has cost him a marriage, his relationship with one of his children, and ten years' quality of life.
Week 7: Things have taken a turn for the worst. I am getting nasty gastrointestinal side effects (one of a lucky one-third who get them, according to the drug company). I wake up a day or two after the shot with gripping deathly nausea that feels like my digestive system has shut down. I can't eat and twenty-four to forty-eight hours later I finally vomit green bile for hours. When I do eat, it's tiny servings of sick-people food. The anaemia makes my legs and arms weak. I get palpitations and puff even moving from one room to another. My range, when I go for a daily walk, gets smaller and smaller. I sometimes have tantrums known as "Riba rage". I am horrible to be around: snappy and completely self-absorbed. I can't tolerate stress at all and when the sides pile up and overwhelm me I break down and cry muttering, "I can't do it. I can't do it." I am comforted through these outbursts but afterward I am ashamed. The weeks, days, and hours drag and I fantasise constantly about "the end". I often wonder if I will make it that far. I claw my way through the days longing for a break from the sides and minor complications but the Interferon laughs and continues its handiwork.
ONE OF MY poisitive friends announced that she suspected a "beat up", meaning she thinks the dangers of Hep C are exaggerated. Harris is dismissive of this paranoia. "It doesn't make sense. A beat-up by whom?" she asks. "The problem is almost the opposite. Because it's seen as a junkie's disease and not a threat to the general population, and it's a slow-moving illness and people aren't dropping dead on the street as soon as they get it, there isn't a community around Hep C the way there was around HIV. A lot of people with Hep C are marginalised, criminalised, may be currently using, and they're not exactly going to want to wave their arms around in the air." Dr Dore agrees that HCV lacks the focus, attention, money and celebrity glamour that has long surrounded HIV: "There's a need to have an improved public profile on Hepatitis C. It's been hard to gain that so far. Even though there are many, many more 'high profile' people with Hepatitis C than HIV in Australia, not one of them that has stepped forward and disclosed that they have Hepatitis C."
A number of public figures have made their status known but they come, almost exclusively, from the international entertainment and music industries. Pamela Anderson hit the tabloids a few years back with Hep C from a tattoo; Phil Lesh of The Grateful Dead has had a liver transplant and hosts an online Hep C discussion group; Steven Tyler of Aerosmith went public after successful treatment, and Sir Bob Geldof spoke at European World Hepatitis Day on October 1, 2006, although his status is not known. Locally, Debra Byrne has disclosed her Hep C in her autobiography, and New Idea ran a story about Mark "Chopper" Read's battle with the virus – though with a sensational heading like "Chopper's Death Sentence", this is publicity that does more harm than good..
Luke Davies, author of Candy, a novel about two addicted lovers loosely based on his own experiences, contracted the virus twenty years ago and after he got clean he took an active interest in his condition, not because he had symptoms but because he was "loving my life so much that I was very concerned how long it was going to last". A geno 1 with 50/50 chance of SVR, he embarked on a stage 2 trial testing Interferon with another drug (not Ribavirin). The trial was suddenly cancelled after sixteen weeks and he was then offered standard combination therapy. All in all he did sixty-four weeks – sixteen months straight – of treatment. He was a "slow responder" and relapsed post-treatment. Even though he describes his treatment experience as "much worse than I understood it to be at the time" and his relapse as a "real shock", he still maintains close contact with his clinic and plans to be at the forefront of the new treatment protocols. He laments the "potentially toxic, extreme, and hysterical" biases that surround the virus.
Week 16: Recent studies indicate that twelve or sixteen weeks could be enough to do the job for my genotype and I have been given the option to finish early though I am strongly advised to complete the twenty-four weeks if possible. Having been given the thrilling news that I had cleared the virus by week four – I'm an "early responder" – I might well stay clear if I stop now but I would always wonder, should I relapse, if those extra eight weeks might have made the difference. For the first time in over twenty years, Hepatitis C is undetectable in my bloodstream and I want to keep it that way. So, although I am desperate for this to end, I've decided to push through to the full twenty-four weeks to maximise my chances of victory. Some days I keep going out of defiance and spite. Sometimes I have conversations with the drugs. "Is this the best you've got?" I ask, daring them in fury. Other times I tell them, "You won't win" or I resume my mantra: "The drugs are powerful but I am more powerful." Every two weeks I go to the clinic and see the post-transplant patients in the waiting room. They sit yellow, puffy and shaking and I remember why I'm doing this. Getting through the days and surviving the drugs is so all-consuming I cannot conceive of any other life, but the other day I walked past a boutique and saw a summer dress. I realised that by the time it's warm enough to wear it, this will be over. I went in and bought the dress and it will hang in my closet for months, a symbol of hope and the future.
THE HEPATITIS C story is not all doom and gloom. Even though there is clearly more work to be done, it's important to recognise the improvements. Many who choose not to undergo currently available treatment manage the virus and symptoms successfully through lifestyle change and alternative and complementary therapies (though these measures are not generally thought to be capable of bringing about complete viral clearance), and most people with Hep C live a normal lifespan. Although Magdalena Harris is correct in identifying a continued need for increased government and social support, Australia has been and remains at the forefront of the fight. We were one of the first countries to initiate harm reduction programs such as needle exchanges when AIDS appeared, and those programs have helped reduce infection rates. The government also funds research and subsidises treatment. Unlike the United States, treatment is offered to Australian citizens on an equitable basis.
Week 24: I just got a call from a friend who has just found out she's positive. She only ever used a needle once – let a lover shoot her up with cocaine twenty years ago. One shot. That's all it takes. She wants to know what I know. She's a geno 3 and thinks she'll do treatment. I couldn't lie and tell her it's been easy, but I don't want to discourage her either. The fact is I'd do it all again for a chance to be free of Hepatitis C. I have spent six months holed up and shut down, a machine whose only purpose is to withstand the drugs and deal with the curve balls they throw me. I've finally reached the end and the prospect of coming back to my life and myself is exciting and emotional. I injected my final shot last night, sat down to dinner, and burst into tears of grief and relief. I have been crying ever since. Recovery from treatment might be quick and easy for those who breeze through, but I suspect for me, and others who come off the battlefield limping and bleeding, it's more likely a long and rocky road. I feel too, regardless of whether I relapse or stay clear, my life is about to change radically. Treatment requires some of us to confront our selves and our lives so deeply it can facilitate major internal and external change. The very act of choosing to undergo it signalled for me a new age, a decision to claim the life I want.
For those who meet their Waterloo with current treatment, the war is not yet over. New drugs are being developed and tested; the most promising among them are Protease Inhibitors (PIs) and trials will commence this year in many countries around the world, including Australia. PIs promise to address the discrepancy in response and SVR rates between the genotypes.
Then there are the inspirational personal stories. Many who get the SVR say they experience a new lease on life. A Christian mother of seven has become a public advocate for people with Hep C and a "Hep C Chaplain" despite having been a "non-responder" to treatment. Another mother completed treatment successfully and is now drawing on support from the online community as she guides her three-year-old child through treatment. There is the Sydney woman in her seventies – the oldest in the country to undergo treatment – who cleared, and the geno 2 woman with cirrhosis who, though forced off treatment after nineteen days due to overwhelming side-effects, still managed to get the SVR.
Six months post-treatment: I have waited six months for this news, for confirmation of the golden SVR. They tested me at one-month post-treatment (still "undetectable") three months (still "undetectable"), and then at six and then the wait of more weeks after that. When the nurse told me that my one-month post treatment test was "undetectable", I burst into tears. I had no words to tell her how much it meant to me and what I'd gone through to get it. In the months that followed, I slowly and gradually recovered and focused on rebuilding my life but the thought of relapse was never far from my mind. If I felt a twinge of discomfort near the liver or felt tired one day, I wondered if the virus had returned. I did notice an unprecendented increase in energy. I got through most days without even thinking about taking a nap, and I dared to hope that this was the "clearance energy" those who stay undetected speak of. I realised how it is that noninfected people pack so much in. For years I watched them go about their busy lives – working, raising children, going to the gym – in awe and envy, and now I seem to be like them, yawning with the tiredness of "modern life" but not hitting the wall at 11am with the overwhelming fatigue of Hep C. Clearing the virus can be confronting. It demands redefinition, the reframing of the negative and self-limiting self-image that chronic illness can create. Awaiting the results I considered the implications of no longer hosting this virus that has been my internal companion my entire adult life. I prepared myself for news of a relapse but I knew no amount of preparation would make "detected" anything less than devastating. My appointment to see the nurse was booked in but I knew the results often came back early. They don't like to give them over the phone in case it's "bad news" but I couldn't wait. I phoned the nurse and begged her to check. I sat on my sofa and forgot to breathe as I listened to the sound of her clicking into my file on the computer. "Your results are back," she said. I could tell a smile was breaking on her face as she spoke: "Hepatitis C undetected."