My Mount Everest
From Griffith REVIEW Edition 17: Staying Alive
© Copyright Griffith University & the author.
Written by Meera Atkinson
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Meera Atkinson's biography and other articles by this writer
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.