The first thing I should mention is the single most important thing about this gathering and others like it. Many conferences are strict convocations, where doctors mingle and speak doctor-speak, where researchers mingle and speak researcher-speak; this event was a very different affair. It was inclusive of everyone with an iron in the fire of viral hepatitis. ‘The stakeholders,’ as people say. You have superstar doctors rubbing shoulders with drug user advocates mixing with hardscrabble rural nurses drinking with bureaucrats discussing financials with drug company reps mingling with statisticians and geomappers and policy mavens. It’s out of melting pots like these that new ideas have a chance to be born. People (including, very specifically, me) also edge closer to understanding the sector as a whole and making wiser, more informed decisions in their own particular bailiwicks. I came away from the event with an acute case of cerebral exhaustion (exacerbated by alcohol, of course; it being a liver conference, after all). I’m almost certain the dry, informative input was not to blame, though there was a vast amount of that. It was more the processing, the constant effort to synthesise everything presented - on stage or in discussion - with what I already knew and with the ideas continuously developing in my head. That’s what exhausted me, I think. For a few days afterwards, I felt like a blank. People would ask me about the event and all my brain could produce was white noise. After I arrived back in Melbourne, I somehow felt like I was still there. In Adelaide. Nothing against Adelaide, but I would prefer not to have my consciousness trapped there for any length of time. Not that I saw much of the city beyond the conference centre and the inside of an Air B&B. I did have the pleasure of walking down Hindley Street on my way to and fro. That was interesting. I haven’t really spent much time thereabouts since the Eighties, but I don’t think it’s changed much. That small-town sleaziness is still in clear evidence – just more of it. I found it quite a cheerful thing, nostalgic even… Spruikers doing their thing outside strip joints, sex-workers under questioning by police… Anyway, back to the conference. I must apologise for not posting anything during the actual event as promised. It came down to the obvious – me forgetting my Macbook cord and having my battery pack stolen from a power-point during one of the talks. (I wonder which hepatologist did that...? Conceivably, it may have been mistaken for a bomb, but… I think that would be drawing a very long bow.) I have heaps of material to discuss, but for this post, I might limit things to my personal experience. And perhaps to some bits and pieces which may not find a place elsewhere. For instance, I learned of the confusion caused at a Queensland clinic by a HCV-positive gentleman with Situs inversus. That would be, in Wikipedia speak, ‘a congenital condition in which the major visceral organs are reversed or mirrored from their normal positions’. In this case the liver was on the left and the spleen on the right, leaving the clinicians rubbing their brow over a series of inexplicable FibroScan results. Thankfully, somehow, the situation was resolved, and congratulations to whoever made the mental leap. I had thought organ reversals were a myth, or something reserved for fictional characters like Dr Who. * The exhibition space for the conference was, naturally, dominated by the big three drug companies, but it was also well populated by other concerned parties, one of which – as I’m talking about my personal experience – I’d like to single out. I’m not certain of the particular company being represented, but I can say for sure that the theme was hi-tech medical machinery. The display was presided over by a gentleman unique enough for me to remember him from two years ago and the last conference. Concentrate on the phrase ‘Electrolux salesman from the Fifties’ and your mind will fill in the details. The moment I stepped within his techno-pentangle, I was going to be tested for something – it was just a question of what. There was some interesting new equipment there: the FibroScan was the star, of course, but there were improvements I had not previously seen. With the right version of the machine a subject’s results can be subjected to something referred to as a CAP (Controlled Attenuation Parameter). This checks the level of fat in your liver and gives an indication around the possibility of Fatty Liver Disease. It makes sense; the FibroScan machine uses sound pulses to determine elasticity. Cirrhotic tissue is stiffer than healthy tissue and fat, one would assume, has its own level of elasticity. (Not much, I’d venture). I can imagine it being entirely possible, with a little recalibration, to include fat in the results – and in one fell swoop making the FibroScan machine relevant in the emerging arena of fatty liver disease. They are also doing FibroScans on spleens now. A poor result here would be a sign of portal vein hypertension and a strong predictor of varices. (If you want more information on these horrible things, look for my article in the forthcoming Whack Magazine. It’s called You Don’t Scare Me.) So much for the orthodox machinery. My eye was drawn to a poster of a woman’s head encased in a peculiar (perhaps even disturbing) unit, the most noticeable aspect of which were the large fan outlets positioned over each of her frontal lobes, and the expression of ecstasy on her face. I’m kicking myself for not taking a photo. (I blame that squarely on the wine & cheese session of the evening before, and maybe a couple of semi-judicious pit stops on Hindley Street during my walk home). I’ve scoured the web for a copy of the poster, but no dice. I can’t even remember what it was called. Brain Zapper? Something like that. The unit was associated, I think, with transcranial electrical stimulation. If you’re interested, look it up, it’s not really relevant here. (Beyond saying that I’ve tried something of the sort and it can have a relaxing effect.) The salesperson, unfortunately, seemed to be pitching the Brain Zapper in a dubious direction, intimating that the brains of dependent individuals may be helpfully rewired by regular use of this instrument. My memory is a bit hazy here, so please don’t quote me. What I do recall clearly is that the unit generates a lot of heat, necessitating the twin fan set up. Oh, and the prototype weighed seventy tons… Or perhaps seven? Sadly, there was no opportunity to test this device. The salesman told me he’d only put the picture up to pique people’s interest. It worked. While I questioned him about it, he guided me smoothly, without my realising, towards another equally inscrutable apparatus. I remember few details on this one – possibly because I was in shock over the results it gave me. He induced me, somehow, to remove my jacket and shoes and stand upon a slightly raised platform on which there were four metal grey Twister-like circles. I gave my height, age and within seconds the unit spat out a receipt which, at lightning pace, he proceeded to interpret. Body fat. Muscle mass. Visceral fat. Metabolic rate of a 44-year-old. That was good. Fast for a 58-year-old. It would make it easier to start burning off fat, because at the bottom of the receipt, in ultra-bold, framed by a thick dot-matrix rectangle, the word… Obese. Was this a carnival or a conference? I didn’t have time to decide; he already had me halfway to the gurney on which they perform the FibroScans. Thankfully, I was saved by a natural dread of learning I was cirrhotic in an extremely public space containing at least some workers who had treated me at some stage or other. Plus, I was in shock. I’ve always been a stick-figure. Perhaps not so much in my latter years, but, still… Obese? Successfully, though not without some effort, I slipped from the gentleman’s clutches. I’m not sure I’m comfortable with the ethics of performing medical tests in such an environment. Not every delegate is going to get a happy result, and in that space post-diagnosis counselling would surely be have limitations? Fortunately, I managed to counsel myself regarding my new-found condition. The most common phrase I uttered for the remainder of the conference was, ‘Do I seem obese to you?’ And almost everyone said, ‘No.’ The silver lining is that I’m already developing a health plan and have vowed to drink less. It will help, whether I’m obese or not. Cirrhotic or not. Whether that machine was a carnival attraction or a bona fide piece of medical diagnostic machinery, it doesn’t matter. Alcohol is a bit of a weak spot for me. My control is reasonable, but the levy can break on special occasions, particularly when I’m overstimulated. In time I will take that FibroScan, but only when I’m good and ready. While on the subject of alcohol, I must point to the naked irony of choosing the National Wine Centre as the venue for the mid-conference social event. (Not that I’m complaining.) Around the corner from the exhibit described above, there was a representative from Cepheid, demonstrating something with as much, if not more, relevance to the Hep C elimination effort as the FibroScan machine. Cepheid produces kits for testing the presence of HCV RNA in the blood. Unlike the antibody test, this is what tells you whether or not you actually have the disease. I actually mentioned Cepheid in the blog a few months ago. An earlier iteration of their device was used in the Burnett Institute’s Rapid-EC trial, which looked to establish an accelerated, pared-down cascade of care, bringing clients to SVR as quickly as possible with an absolute minimum of fuss. At that time, it was required that blood be taken in the normal way before it was analysed by the Cepheid machinery. This could take between two and three hours, a period few people would be happy to spend lingering in a medical clinic. Most would leave, promising to come back later, or on another date - but, of course, not all returned. Cepheid have now come forward with markedly improved equipment. Only a drop of blood is necessary, eliminating the need for a full blood-taking session. The sample is placed in a cartridge they call the ‘Xpert HCV VL Fingerstick’ which in turn is placed in a ‘GeneXpert’ system: a kind of base station which runs the analysis. Here’s the kicker: it only takes half an hour. (Cepheid’s literature states that ‘RNA quantitative results (will be) available in less than one hour.’ Quantitative results (the actual quantity of virus in the blood) are becoming increasingly irrelevant in the era of DAAs. Qualitative results are the important ones. Those that tell you if the virus is actually present or not. During a presentation on the device, the speaker proposed that these qualitative results - the yay or nay – could indeed be available within thirty minutes.) This could make a vast difference in the treatment of Hep C, making the dream of a one stop shop a reality. A patient could front at a medical provider, be tested, have their prescription written and obtain their medications within an hour - leaving that much less room for people to fall through the cracks. Better yet a peer worker could roam the world testing their friends and acquaintances and returning later with results in hand. Unfortunately, we’re not there yet. Diagnostic kits like those made by Cepheid are still to be approved for use in Australia - not to mention the serious number of other barriers that remain in the way of such a super-simplified process. As you might imagine, this was a matter that consumed a great deal of energy and time at the conference. The development and implementation of powerful diagnostic technology will, without doubt, be an important factor in Hep C elimination. One of the international speakers, Michael Ninburg, President of the World Hepatitis Alliance (USA) and an extremely genial gentleman, pointed out that such kits were even beginning to appear on the WHO Essential Medicines List. I’ll leave this post here. Next week I’ll be looking into the hard core of the conference. The central theme: ‘No One Left Behind’ and the surprising manner in which it was interpreted by some very cunning minds The Golden Phaeton

I know I’m not the most regular blogger out there, but I do have a few excuses for the occasional... gap. For a start, I do a lot of research. And I'm very particular about things, but, in addition, for the last… month maybe? I’ve been working on articles for HRVic’s WHACK magazine … at least one of which I might republish here: a gruelling, graphic description of what it’s actually like to die from liver failure. Not for the faint of heart, or for the queasy. But the real reason for this post is that I’m heading to Adelaide next week for the 11th Australasian Viral Hepatitis Conference, just to see if there will be anything remaining of the extraordinary air of optimism present at the last conference. If you doubt me regarding the optimism, here’s some visual evidence. (The Reg Mombasa T-shirts all read 'Eliminate C' (or something very similiar)) If you’ve been reading The Hepalogue, you’d know that things are cooling down on the treatment front, and that people are tearing out their hair trying to keep up with elimination targets. The theme of the conference is – No One Left Behind. I’m very keen to learn what strategies people have developed to eke out some of those 200,000 Australian still carrying the virus. So… You can expect a sudden flurry of short, newsy posts from the conference next week. I do hope you enjoy it. The Golden Phaeton.

The war against Hep C, that monster from the microrealms, is waged on many fronts - biochemical, behavioural, socio-political and more. On none of these have we claimed victory until the emergence of DAAs. We may now say, categorically, that the Hep C elimination effort is no longer being held up by drug development. The virus, backed by oceans of time and the heavy hand of evolution, has been beaten down by the club of human science. In the labs and clinics its biochemical back has been broken. Indeed, the DAAs which entered the ring with great fanfare around two years ago are beginning to look old. Gilead Sciences’ Harvoni has been superseded by their pangenotypics Epclusa and Vosevi. Vosevi is a tri-drug formulation designed as a ‘salvage’ medication for those who have failed Epclusa. AbbVie, makers of the Viekira Pak, have for a long time been running second to Gilead, but their new pangenotypic product Mavyret may put them ahead. Not only have they undercut Gilead’s drugs on price, but the Mavyret regimen takes a flat eight weeks, further diminishing the cost. As of February this year, they had snagged a third of the US Hep C market. AbbVie has also been the first to retire new generation Hep C meds, announcing that they will cease to produce two formulations containing Ribavirin. (Ribavirin is an older-style anti-viral with severe side-effects which was believed to increase the chances of a cure in certain cirrhotic patients.) Merck & Co, who had been angling for a niche position with their drug Zepatier, have decided to abandon the HCV field entirely (though not before attempting to sue Gilead for billions over Sovaldi patent issues). (TGP - I have heard that Merck sales reps are still shilling for Zepatier in Melbourne clinics, so the above info may be limited to the USA.) Janssen Sciences has also abandoned Hep C as the overall market value shrinks in the aftermath of the of DAA miracle. Wait. Shrinks? Shrinking? With millions of Hep C patients at large in the world? With the US opioid epidemic ramping that country's transmission rate? I think that by ‘shrinking’ the stock-market analysts are referring to the pool of patients who are wealthy or insured enough to pay massive prices for a course of Hep C drugs. Interestingly, Gilead and other big drug companies are injecting money into research on Nonalcoholic Steatohepatitis (NASH). Why interesting? I’ll explain. First off, NASH is a form of NAFLD. That would be Non-Alcoholic Fatty Liver Disease. It refers to a pathological buildup of fat in the liver. If there is also inflammation and damage to liver cells, then it becomes ‘NASH’. Around half of all people with Hep C have some degree of steatosis (fatty liver) and the condition is an important means by which the disease harms the liver, accelerating the progression to cirrhosis and liver cancer. US researchers have ascertained that, even after the cure, a similar percentage of patients suffer from NAFLD. After treatment, therefore, you can look forward to a lessening of fibrosis and a normalising of inflammation markers (ALT, AST), but your NAFLD may dig in its heels. The reaction of Big Pharma has been predictable. In stock-market related gossip NASH has become the new Hep C and the list prices of companies are rocketing all over the place on rumours of a new Sovaldi. To quote Seeking Alpha (A US stocks blog) ‘Biotech investors are crazy about NASH. Rarely do borderline efficacious results from a Phase II trial inspire triple digit percentage moves’. Madrigal, Intercept, Galmed. They sound like the kind of nefarious corporate entities who might develop risky life-extension technologies in secret science compounds on unmapped islands. Think Westworld. Or Stranger Things. Or Lost. Or Jurassic Park. Anyway. It appears that drugs already in development will be able to reduce fat-levels and fibrosis in the livers of affected patients. This is a big deal because there is currently no good treatment for NASH/ NAFLD. Gilead may be able to console itself over its declining revenues by re-treating those they have cured of Hep C with brand-new, appallingly expensive fatty liver medicines. What’s more, there seems to be a correlation between more severe steatosis and a higher body mass index score – meaning richly-insured obesity patients will be bounced into the equation. No wonder Gilead and her sisters are licking their chops over these fatty buildups. (While on the subject of Gilead, a repurposing of their mega-drug Sovaldi may be underway - as a treatment for, of all things, the Zika virus. Remember the panic caused by Zika (a flavivirus like HCV) when it led to an outbreak of microcephaly (undersized brains) among newborn Brazilian infants in 2015?) I should note that there is also an AFLD (Alcoholic Fatty Liver Disease). Enthusiastic alcohol consumption exacerbates fatty liver disease. Therefore - as if you did not know - people with Hep C and those who have been cured of Hep C should watch their alcohol intake. As well as their diet. We should exercise too. This research on NAFLD underlines the importance of ongoing liver monitoring for those who have been cured. Because you can have perfectly normal blood results but still have creeping NAFLD/AFLD, this surveillance may benefit from tests that include ultrasound and FibroScan. A cure increases the quality and quantity of life, but it’s only been a couple of years since DAAs rode in to slay the beast. The long-term treatment landscape remains unclear, so… basically, take care. * Aside from eating sensibly, exercising and curtailing ones alcohol consumption, what else can those touched by Hep C do to amend their diets for the better? As usual, there is news on this front and, as usual, it should be taken with a grain of salt. Let’s begin with pot. Pot. What can’t it do? You would have to be deaf dumb and blind not to have noticed the hype surrounding ‘medical marijuana’. The effects of cannabidiol (CBD) oil in particular have been touted hugely. (CBD is the cannabinoid responsible for the ‘body stone’ as compared to the ‘head stone’ produced by THC-heavy bud.) A quick scan of the net will tell you that CBD will ease or even cure various cancers, epilepsy, irritable bowel syndrome, schizophrenia, rheumatoid arthritis, MS, lupus and any number of other auto-immune conditions. It is said to help with anxiety, inflammation, pain, sleep and appetite issues and is, predictably, an anti-oxidant. But what about Hep C and the liver? According to Hep Mag (to which I give a solid nod as an interesting, reliable and useful publication) a French team has ‘found that regular pot use is associated with a lower risk’ of fatty liver among those with HCV (and HIV) – even when figures are controlled for body weight and other risk factors. ‘Does this mean,’ continues Hep Mag, ‘that everyone with HIV and HCV should fire up the bong or bake a bunch of brownies?’ Predictably, chief researcher Patrizia Carrieri suggests that her results should be ‘interpreted with caution.’ She stresses the importance of lifestyle factors – exercise, diet, alcohol consumption – and reminds us that the smoking of anything is a risk to the health. Although the results point in an interesting direction, she says, science is yet to determine whether there is an actual causal relationship between pot use and FLD. It has been suggested that cannabinoids can ease the symptoms of Hep C by reducing liver inflammation, and twelve or more states in the USA offer pot as such a treatment. Unfortunately, thus far, studies only show that ‘using medical marijuana to treat the liver does not make the liver worse.’ Just over a year ago, Jamaican(!) scientists hinted that they may be close to developing a CBD-based drug with true antiviral activities which could provide a cheaper alternative to DAAs. Of course, as a rational thinker and proud sceptic, I have been champing at the bit for months in my search for CBD oil. (I remember doing the same for Prozac when it first arrived on the radar.) Lots of people, at home and in the office, claimed to have leads on acquiring the semi-legal substance, but nothing panned out. A few weeks ago, I finally acquired some (I won’t say how) and, though I can’t give you results on any fatty liver disease I may or may not have, I must say that I have been sleeping well, feeling okay generally, and have had no episodes of anxiety. I’m going for a stronger dose next time. But that’s just me. What else is good for Hep C, or in the aftermath of Hep C? Maybe green tea. And Zinc. What’s bad? Olive and avocado oils. Maybe. First the good news. Scientists at the Mayo clinic, using mouse models, have observed that an antioxidant extract of green tea ‘Theaphenon E’ ‘prevented liver tumours from forming and lowered the number and size of such tumors’. I won’t go any deeper here, but it is interesting research and there are reasons to believe that it could scale up for humans. A cautious head-researcher suggests that taking the extract ‘at least couldn’t hurt’ – though Hep Mag warns that such nutritional supplements are poorly regulated and therefore not wholly trustworthy. Might drinking actual green tea be a solution? As for zinc… well it’s complex and involves proteins called Metallothioneins (MTs). MTs have numerous functions but are principally known for binding metals like zinc within cells. Hep C is known to affect the expression of these MTs, exciting it in the acute phase, suppressing it in the chronic. (Chronic Hep C is also known to deplete zinc levels in the blood.) Western Australian scientists have been digging into this pile with the idea that MTs may have an actual anti-viral effect. They conclude that zinc (with the help of MTs) does indeed inhibit HCV replication and that ‘zinc supplementation could be a low-cost and safe addition to current therapies.’ The take-away? Get treated and you won’t have to worry about zinc supplementation. I consumed kilograms and kilograms of blueberries when I had Hep C. This was thanks to Japanese scientists and the results they achieved with blueberry extract and petri-dishes. Who knows if it had an effect? Sadly, one rarely hears of these kind of studies beyond the initial hoo-ha. Now the bad news. American mice have suffered further to teach us about our livers. This time, strangely, the research involves the possible long-term harmful effects of monounsaturated oils – the so-called ‘good oils’ derived from such things as avocados and olives. It may be that ‘bad-oils’ – i.e. saturated animal fats – are less likely than thought to cause Fatty Liver Disease (see above). Groups of mice were fed a variety of high-fat diets. While all grew obese and most showed symptoms of FLD, researchers were surprised to find that those on a ‘starchy monounsaturated fat diet had by far the most severe disease, accumulating 40 percent more liver fat than the mice on the other … diets’. More research is clearly indicated, but the authors of the study do suggest that we ought to enjoy vegetable oils like avocado and olive in moderation. I would go on to say that fad-diets can be dangerous, and that variety in itself is a good basis for any diet. * As usual with these newsy posts, I have to stop myself going on forever. But before I finish, I'd like to mention a couple more things. There is fabulous news – reports of which are coming from many sources – that DAAs are causing a boost in organ transplantation. Lungs, kidneys and other organs from Hep C positive cadavers are increasingly been used - after which the recipient is cured with DAAs. Liver transplant waiting lists around the world have been significantly reduced since the new treatments became available. And yes, livers actually infected with HCV have been used in transplantation. Also, I have been fascinated lately by behavioural studies on gender disparity in Hep C infection. Figures suggest that women who inject drugs ‘are about 39% more likely to become infected with hepatitis C virus than men who inject’. The reasons for this are various and slippery, and I’m curious to look into it a little more. I’m interested in the assumption (true or not) that women are more likely to share needles in a social setting - as well as the darker side, involving masculine control and the likelihood of females 'going second'. Perhaps I’ll look into it more thoroughly in the future. Cheers, The Golden Phaeton

(NB: The statistics cited in this post are generally rounded down to the nearest 10,000. This is for safety and simplicity's sake, as even the raw figures are approximations.) Picture this: It's after midnight. I am forty years younger, profoundly inebriated, drugged on what are probably multiple substances, yet typically eager to push the envelope. I am perched at the top of a winding staircase in a three-storey terrace house where a post-gig party is underway. By my side a 'nurse' is seated. In my hand is the only available syringe. Attached to it is the only available needle. The nurse mixes up in a communal spoon, ties off my ‘patient's’ arm, and finds a vein into which I inject what in that era was most often called 'smack'. It is a memory I would rather not have, stark and eidetic, of peering anxiously down that deep, twisting staircase. Every two or three steps there sat another of my ‘patients’. Were there twenty, or thirty young faces, washed out under the light of an incandescent globe that hung on a long wire over the stairwell? All were in possession of drugs and had formed a queue for my services. Somehow, I was the only one capable of doing the business with any degree of proficiency. Or perhaps I was the only one willing. I remember it so clearly, I believe, because I felt so guilty about it, even then – and this was with no knowledge of the long-term consequences of that night, and many nights like it, that repeated again and again in that time through the inner suburbs of Melbourne. I was a kid then. Everyone there was a kid. And it really is dreadful to look back and contemplate. In my mind the multiplication of the deed casts the wrongness of it into dreadful relief - but I'm not here to moralise. The point is that the Hepatitis C virus was in ascendance that night. And on all the other nights. With a high degree of certainty it was communicated to every person in that godawful queue. A proportion – between 15-25% - will have naturally shucked it off. The remainder will have developed the chronic form of the disease. My question is – where are those people now? Some will have taken a route similar to my own, evolving into extravagant, full-blown junkies who ultimately gravitated towards medical services, where they learned, many years later, of their infection. Some of these - if sufficiently informed, or bothered by symptoms and the threat to their health - will have sought treatment during the last few years and been cured. But others will have drifted from sight, putting their habits, and all thought of the drug-using lifestyle behind them. Other members of that fateful queue will not have gone on to develop habits or any sort of significant using history. This is the sometimes controversial, oft referred to, and more socially acceptable category of those who contracted the disease during a ‘wild period’ in their youths. It is a group which is particularly difficult to track and is thought to comprise a serious percentage of the approximately 180,000 or so Australians who contracted the disease via injecting but have yet to be treated. This is in great contrast to the USA, for example, where it is thought Hep C entered the population during and after World War Two (1941-5). Fuelled by a general increase in the number of medical procedures and a lethargic uptake of safety measures like the disposable syringe, the greatest spread of the virus occurred between 1940 and 1965. As a result, the Baby Boomer generation in the USA is far more likely to have contracted Hep C via medical transmission. In Australia, the disease took root much later. Its appearance is associated with sixties counterculture and the boom in recreational drug use. Australian servicemen, introduced to injecting heroin in Vietnam, brought their practices and the disease back to Australia, where it spread among other injectors. US servicemen stationed in Australian capitals are also thought to be part of this epidemiological equation. (Interestingly, it is possible that the HCV strain that returned with our troops was actually introduced to Vietnam by US soldiers.) It wasn’t until the advent of AIDS that blood related prophylaxis became a matter of urgency in Australia. Previously, needles were insufficiently sterilised before reuse in multiple medical settings including transfusion and mass vaccination. Certainly, people contracted Hep C in this way but, fortunately, the prevalence in our general population was simply too low for the disease to use medical transmission as a major conduit. What I’d like to address here though are the 180,000 plus who contracted the disease via unsafe using practices and are yet to be treated. Those who are most probably typified by the awful stairwell scene described above. Using figures from the Reaching Out report (Jacqui Richmond et al) released by Hepatitis Australia in 2016, we can say, roughly, that 150,000 of the above remain untreated since the advent of DAAs. Of these 100,000 no longer inject drugs. (This is defined as not having used in the last six months). The prevalence of Hep C among current injecting drug users is something like 50%. But this almost certainly used to be higher. Modern users have advantages over their predecessors: the ready availability of clean needles, and a reasonable chance of having been educated regarding blood borne diseases (if not of Hep C then of AIDS). Recall also that only since the mid-eighties have we known of the virus’s presence on planet Earth. Consequently, a whole lot of Hep C was contracted pre-1990 - in places like that stairwell - and there is no doubt that a huge chunk of those 180,000 who caught hep C via the needle are getting on in years. Not only that. With each month, fewer are getting treated. The percentage of plus 50s diagnoses has been increasing yearly (These are considered late diagnoses rather than new infections) but treatment numbers overall are tailing off. According to Hepatitis Australia, monthly treatment initiations have dropped as low as 1200 per month – 300 below the 1500 thought to be necessary to achieve elimination by 2030. It’s safe to say that nearly all highly-motivated patients have by this point been treated. Various initiatives continue to chip away at those current injecting users who are in contact with medical services - a sensible policy, as this group is primarily responsible for the spread of the disease. But there remains that vast, undiscovered population of the HCV positive out there. Of who 100,000, at minimum, are ‘ex-users’. And who, generally speaking, are not spring chickens. At this rate, if the virus is to be eliminated, it will depend on a massive, progressive die-off of older carriers – largely, one would think, from liver failure. Hmmn. Adds a certain ghastliness to the term 'elimination', doesn't it? (Without, at any point, suggesting that natural attrition is a pivotal part of any official strategy.) So, where are they? Why have they not presented for treatment? How can we lure them in from the wilderness before they succumb to the disease? These questions are currently front and centre to the elimination effort. A large proportion of these ‘ex-users’ will not think of themselves as having been users at all. Perhaps they only used a handful of times, perhaps only once, perhaps on the night of the stairwell. Perhaps they used and don’t even remember. Perhaps, they dated a user for a few months, adopted his or her ways, then erased the experience from their memory. Perhaps, they used so little that they feel it unfair to be categorised in such a way. Perhaps, like a friend of mine, there was a refusal to believe that they could ever contract such a disease. These are forms of denial. There are also the forms of stigma – and with these we are regrettably very familiar. Simply to think of oneself as an ex-user is often an unpleasant thing, particularly if you have moved on to live in a milieu where injecting drug use plays no part. You may have married out of the drug scene, had children and built a life for yourself far beyond your ‘youthful indiscretions’. You may have never seen a need to reveal your sketchy past and would rather not surrender it now, after all these years, by fronting up for Hep C treatment. You may work in an environment where a position of trust, responsibility or authority means that you cannot afford to reveal your unpalatable history, whether you are in denial over it or not. What this all suggests is that, if such people are targeted for treatment as ‘ex-users’, then there is a good chance that they will ignore, or else entirely miss the message. (I should also mention a particular difficulty with the term ‘ex-user’. The natural history of a person’s injecting drug use is a dynamic one. They may move in and out of the practice multiple times, never settling into one definition or the other. This makes any official number of ‘ex-users’ extremely slippery – especially considering the stigma-driven tendency of people to deny their drug use, whether current or historic. I think that when reports describe populations of those who ‘no longer use drugs’, we can safely assume that a good number of them actually are using drugs or will again at some time in the future.) It may also be the case that ‘ex-users’ are insufficiently educated about Hep C. It is hardly a mainstream news topic, and one which may be actively ignored by those attempting to relegate their drug using experiences to the fog of history. There may also be those who are not up to date on the new DAAs and still believe the disease is incurable (short of an horrendous, unreliable chemotherapy-like regimen). Education would be the answer, but the successful delivery of it would be no mean feat. The Reaching Out report, citing anecdotal evidence, provides a few ideas for identifying elements of the untreated using/ex-using demographic: ‘A tendency to attribute symptoms such as tiredness, aches and pains to getting older rather than associating them with hepatitis C.’ This is a good one. Why engage with medical services (where Hep C testing may be on offer) if you’re just feeling the vague, nondescript effects of ageing? Then there are those whose ‘aches and pains’ are veiled by the analgesic effects of methadone or buprenorphine. Although they are engaged with medical services, it is often the case that pharmacotherapy doctors pay too little attention to their patients’ general health,  shuffling them in and out of their office at a hectic rate. Allied with the above, comes the suggestion that some of the population are ‘caring for grandchildren and/or elderly parents and tend to prioritise their needs before their own health’. The report also proposes that a significant number may have ‘an affinity with 1970s and 1980s rock music.’ As if there was any kind of doubt! Here we are brought directly back to the dire tableau I described at the top of this post. As someone who lived and breathed the Melbourne punk scene through the late-seventies/early eighties, I can categorically state that needle-use was de rigueur in that community - and that few of those I know from the scene escaped without Hep C. Many have already perished. HRVic staged the Liver Tonic  event last year with just this group in mind. However, my sense is that a good percentage have actually been treated by this stage, thanks largely to a renewed sense of community driven by the nostalgic urge and by social media. Finally, the Reaching Out report mentions Alcoholics and Narcotics Anonymous, suggesting that ‘members who are not currently engaged with medical care, may be connected with treatment’ through their support groups. One thing is clear. Our mystery demographic is large and diverse. It continues to inspire a great deal of frowning and hand wringing in every corner of the sector. How to target? To lure or inspire these people into treatment? How to sleuth out subcultures and behavioural trends, developing bespoke solutions for ever diminishing percentiles? Of course, this methodology is legitimate and ought to be pursued, but it is inevitably slow, gruelling and somewhat piecemeal. Could it be that a simpler, overarching plan might embrace the entire demographic? Might there be an approach in which stigma is sidelined, in which the disease is treated like any other, with no assumptions as to the route of transmission? Possibly, yes. And such an approach has been tried. In the US a screening program based on nothing but year of birth (1940-65) has been attempted in a number of forms and settings in order to determine cost-effectiveness. Again, citing the Reaching Out report, US baby boomers have been screened when presenting to emergency departments, and when fronting for colorectal-cancer related colonoscopies. ‘Innovative use has been made of a hospital’s electronic medical record to identify people in the target birth cohort’ and a group known as the Healthy Trucker’s Association of America has applied tests to attendees at an industry health expo. It is unclear how well these programs panned out. They were small-scale and occurred in a population rather different from our own. Nevertheless, to my mind, the approach seems solid. We have a large, diverse population, the majority who fall into the plus-50 class. Might a quicker, cheaper fix be achieved in approaching them as an age group rather than a complex assemblage of many smaller, overlapping groups whose main commonality is an activity they shared three or more decades in the past? Consider this: when Australians turn fifty, as part of the National Bowel Cancer Screening Program, they receive a test kit in the mail. And another every few years up to the age of 74. More than a million kits are mailed out each year and around 40% respond. What if we were to include, say, a Hep C antibody test? (Or perhaps, as they become available, one of the newer dried blood spot RNA assays?) Might it be an efficient means, if presented sensibly and sensitively, to alert a significant portion of our unrevealed population to their Hepatitis C status? To educate them on the the new treatments? To connect/reconnect them with medical services with a minimum level of associated stigma? Just an idea. In the end, frustratingly, all that may be said is that a lot of work remains to be done with this population if our elimination target is to succeed. This coming World Hepatitis Day (Sat, July 28) Australian user-groups are going to present a united front on the matter, addressing all the inherent issues, and asking how we might save these missing tens of thousands rather than let them fall to natural attrition. The Golden Phaeton

Melbourne's new safe injecting room is great news - but establishment stigma won't be suppressed. If you’ve been reading this blog, you may have noticed that I write rather a lot about stigma and discrimination against illicit drug users. I’m of the strong opinion that these issues are critical in the uptake of Hep C treatment, however, today I’d like to address them (and a few other things) in a different, but related context. Around this time last year, the number of overdose deaths was upticking and there was a worrying increase in the visibility of drug use on Melbourne’s streets. As a result, in a suddenly quite rational-seeming atmosphere of discussion, there was renewed talk of establishing a safe injecting room. Two weeks ago, the decision to trial such a space in the City of Yarra was, at last, announced. Until now, the Victorian State Government has been fundamentally opposed to the notion. However reasonable and progressive they may like to present themselves, they will inevitably serve what they perceive as the current political reality. But they have been obliged to address a preponderance of positive evidence, the support of all relevant social institutions and a deteriorating situation on the streets. Unpleasant and difficult to ignore, injecting drug use is now pervasive in the public spaces of North Richmond. The number of drug overdose deaths has exceeded the road toll (for the second year running) and we are only in November. Add to this the threat of a Greens Party candidate snatching a seat in the most affected area, and the Government was finally inclined to act. It’s good news, indeed, but predictably, there are conditions. It seems that a positive, life preserving, ethically sound program like this - based on a teetering pile of gold-standard proof– must be salted with punishment. There are few politicians on this planet, after all, who do not believe law and order is the most efficacious recipe for rustling up votes. So, the Government’s new drug strategy includes a lowering of the quantity threshold for trafficking charges, both for ice and heroin. Just because. Or rather because they do not want to be perceived as being ‘soft on drugs’. In an effort to stymie the sale of synthetics over the counter, they have also announced what seems to be a questionable and scarcely legal ban on ‘any substance that has a psychoactive effect, regardless of (its) chemical makeup.’ I wonder if this includes coffee? And because injecting drug-users can’t be trusted, there will be special efforts made to eliminate drug-dealing in and around the safe injecting facility. CCTV coverage will be maximized, though an individual here in the HRVic office has expressed doubt as to whether there is even room to fit more cameras in that locality. To quote The Age: ‘The force will also be monitoring activity around the proposed safe injecting room in North Richmond to ensure it does not become a "honey pot" for heroin trafficking, Assistant Commissioner Rick Nugent told the inquiry.’ Such is the iniquity of drug dealers in this gentleman’s mind. Like vermin, mindlessly obeying their loathsome instincts to infest and destroy. He’s working on some peculiar premises. After all, the safe injecting room is being situated where it is precisely because the area is already ‘a honey pot for heroin trafficking’. Secondly, there’s no reason why the dealers would leave their patch around Victoria and Lennox to congregate around an official location like North Richmond Community Health (the site of the facility) where a large percentage of their clients already go for injecting equipment. Thirdly, there is no available evidence for such a ‘honey pot’ effect. Thankfully, the police force have signaled their willingness to cooperate generally and will adopt the peaceful co-existence approach that has been successful in Sydney. Also, in blind accordance with a receding vision of Judeo-Christian morality, it appears that no client’s children below the age of 18 shall be permitted to enter the premises. Better they be left in the car, or at the nearest playground than in, perhaps, a waiting room? Perhaps it is just too disturbing a thought that they may be present on the same premises in which their parents are engaging in such fearful and nefarious acts? Because we’re talking about drug users here, there must be some chance that, despite any precaution, simple proximity will inevitably expose them to bloody and illicit acts of medical self-abuse. And what of the customers who are themselves under eighteen? Yes, they are excluded, although - because they do not have cars or, often, homes - they are more likely to use in public spaces. They are also more likely to lack knowledge of precisely those harm reduction techniques which the staff of the safe space will be there to provide. In Kings Cross, public injecting was the principal driver for establishing their safe injecting room. In Victoria it is the rising overdose toll. This is a possible explanation for the disappointing and dubious decision to exclude ice-users from the facility. Compare this to Sydney, where people can inject any drug they like. There has also been rumour that only one person will be allowed per booth in the centre – as opposed to Sydney where the number is two. If true, this seems needlessly officious, and likely pointless. In another difference with Sydney, clients will be required to provide their real names and access to their medical records, creating an unnecessary disincentive for attendance. Obviously, I am highlighting the negatives here to make a point about endemic social stigma. The decision on the safe injecting facility must be hailed for the great thing it is. Already there are positive flow through effects with calls for more injecting rooms in Footscray and the ACT. The government seems also to be leaving at least some decisions up to clinical discretion, which has to be a good thing. It should also be noted that the Victorian government intends to clamp down on dodgy detox operators, and is including funding for 100 extra rehab beds as part of its drugs package, marginally easing a great insufficiency. But the stigma runs deep. It is a default community position. In many circumstances, unless an issue is pinned down with logic or an appeal to basic humanity, the prejudiced image of the drug user will prevail. It is the path of least resistance, the social gravity that makes opinion run downstream. The Golden Phaeton

A little while back, Harm Reduction Victoria held its Annual General Meeting for the 2016/17 financial year. Such events are typically rather dull, comprised in the main of dry administrative tasks demanded by law. But we do make some effort to colour things up. Jane Dicka, our drug overdose educator, showed a short film titled Straight Shooters. Funded by INHSU and deliberately mimicking the format of the ABC series You Can’t Ask That, the movie opens a window into the lives of people who inject drugs (PWID). It is intended to dispel commonly held misconceptions, to push back against discrimination and stigma, but has the added advantage of being rather heartwarming and really quite sweet. It was first presented by Jane and Samantha Jones (our communications genius) at the ‘International Symposium on Hepatitis Care in Substance Users’ held last year in Jersey City, New York. It’s definitely worth a look, if you feel so inclined... Traditionally, we also host a guest speaker at our AGMs. Generally, this speaker comes from outside the organisation, but this year we heard from HRVic’s Executive Officer Jenny Kelsall, who has recently retired from her role owing to poor health. Jenny is a legendary figure in the harm reduction world and her legacy is nothing short of extraordinary. Her life has been epitomised by groundbreaking and untiring work as a voice for one of the most marginalised elements of our community – users of criminalised drugs. Her influence has been pervasive. She is admired across the board by gastroenterologists of renown, health providers of all stripes, policy makers and politicians, health advocates and by her drug using peers Jenny used the occasion to speak about herself and her health. She was at pains to make certain we understood that she did not choose this topic because she was ‘self-preoccupied or overly narcissistic’ – an absurdity to anyone familiar with a career dedicated to helping people other than herself – ‘but because of a telling irony at the heart of (her) recent experiences and (her) current ill-health’. She elected to describe her personal experiences because she believed – rightly, I would think – that they would be educational for some of those still infected with Hep C, particularly those who, for whatever reason, may be delaying treatment. Much of the following is taken directly from Jenny’s speech (with a little judicious paraphrasing). I found her words poignant. I hope you do too. Jenny’s health has been reduced for some time now. In the first half of last year she took three months long service leave, and it was only a week after she returned to work that she fell and broke her hip. While recovering in hospital, she was diagnosed with cirrhosis and, ultimately, advanced liver cancer. ‘I was given months rather than years to live and, when pressed, the doctors guesstimated my life expectancy at five to twelve months. As you can imagine, I was completely shattered. ‘The shock of the diagnosis was compounded by a profound sense of irony, and the part my own folly and procrastination had played in my predicament. ‘Harm reduction and the prevention of blood borne viruses are major areas of focus for HRVic. As a result, I had always considered myself relatively well informed about Hep C. '"Then why," I kept asking myself, "was I unable to protect myself?” ‘I’ve come up with a lot of explanations… but none of them make much sense at this point in my life. My thinking was circular – I would go round and round in my head, getting nowhere fast. 'It went something like this: ‘- It won’t happen to me! I guess I harboured that very human delusion and simply thought that it wouldn’t happen to me – to someone else perhaps, but not me. ‘- I know too much. Somehow, I saw my knowledge of Hep C as a protective factor. After all, I knew what to do, where to access treatment etc... (As I speak, it’s hard not to choke on the irony of these words and sentiments.) ‘- I was too busy (for treatment). ‘- I don’t drink! I have not drunk alcohol since I was first diagnosed more than twenty years ago. Alcohol is heavily associated with cirrhosis (and can accelerate the progression from fibrosis to cirrhosis) but I knew that for Hep C patients abstinence, in and of itself, cannot prevent cirrhosis - nevertheless, I saw this lifestyle choice as another protective factor. ‘- When the new treatments came online, they seemed too good to be true. To that point, Hep C treatments had been nightmarish and I, like many of my peers, found it hard to trust early positive reports about the new DAAs (Direct Acting Anti-Virals). (When these drugs did in fact live up to their promise, I had never been happier to be proven wrong.) ‘For myself, I had never seriously considered the old interferon treatments, although I supported many clients more courageous than I through that very difficult experience. Though suspicious of the new DAAs, I was ultimately convinced by glowing reports from the first groups of people to receive treatment. The drugs appeared to be as effective and as easily tolerated as claimed. People were keen to access treatment, myself included - but I did not act. ‘- Like the vast bulk of people living with the virus, I was asymptomatic. Though I knew this did not rule out serious progression of the disease, it was another aspect of my ‘magical’ thinking. ‘- I’ve got plenty of time! Again, the irony of these words is hard to swallow. It could well have been too late already, but I will never know whether procrastination was my downfall or whether the die had already been cast. '- They won’t be able to get blood. (TGF: See this post) My difficult and damaged veins have posed problems for many years, making blood tests virtually impossible. Again and again, I have approached pathology services only to be sent away with no result. In the end, I was left with nowhere to go. (A current blood test, of course, is a mandatory part of the work up before starting on treatment.) ‘And so my thinking went, around and around in ever diminishing circles. And the thing about circles is that their beginning is also their end - and their end their beginning. As I have already commented, I got nowhere fast, achieving little - aside from an overwhelming sense of my own stupidity and short-sightedness. I had not heeded the warnings - despite all that knowledge I had accumulated on the dangers of Hep C. ‘Then, somewhere along the line, it occurred to me that if it was happening to me - and I was unable to save myself – it was, in all likelihood, happening to others as well. Inherent in the supreme irony of my story, I saw that there were lessons for us all. 'The first concerns HRVic itself. 'We need to keep doing what we do here – and do it with a vengeance. For all that we’ve achieved over this and previous years, we still need to do more. 'Our peer networkers – those true Hep C treatment ‘champions’ – may be complaining of ‘Hep C fatigue,’ but they cannot slacken off – and need to do still more. We need to refresh and enlarge membership in this peer networker army - to increase its reach and enhance HRVic’s credibility among as many PWID communities as possible. We must ensure that our educational resources, both electronic and print-based, remain relevant and appealing. 'Ultimately, we need to remain tireless in our efforts to spread the good news gospel of DAA treatments. We need to accept the fact that human thought is not always rational – particularly when it comes to ones own health - and that it can take time for people to act on what they learn, no matter how convincing the case for treatment. 'Certainly, people should be given time to make their own choices, but it is our job to make sure they know that treatment, without exception, is best done earlier than later - especially, as is common, if they have been living with Hep C for decades. 'We must clearly stress the truth that a lack of symptoms is not always indicative of a lack of disease – remembering that most us are asymptomatic. (Sometimes, as in my own case, even if the disease is at an advanced stage.) 'We need to encourage regular testing. And we should continue to advocate for alternatives to traditional blood taking. New techniques (including Dried Blood Spot analysis (DBS)) are already in the pipeline, but they cannot arrive soon enough for our PWID community, many of who have damaged veins and cannot easily supply blood for testing. 'We must continue to challenge stigma and discriminatory practices in the healthcare system, and to support community members if and when they are subjected to this kind of cruel, inhumane treatment. We need to support them through all their fears and foibles, so they can benefit from the new treatments - and in doing so further reduce the pool of infection. 'I could go on, but I trust I've made my point. I hope that my story will help others avoid my mistakes and inspire them to seek treatment before it is too late. After all, as they say… ‘It’s an ill wind that blows no good’. 'Despite our society’s love affair with youth and living longer, we all die. No one gets out alive. But, thankfully, Hep C is no longer the death sentence it once was. DAAs have flipped that equation on its head.' Jenny Kelsall is a rare bird with a sharp, ranging intellect and a nature as caring and as self-sacrificing as I have seen. Above, she speaks of the human mind’s ability to rationalise, to fool itself, even when it comes to deadly serious questions related to its own survival. She has scoured her mind in search of the reasons why she (perhaps fatally) delayed her own treatment, but there is one reason in particular which, I believe, she has omitted to mention. Over my time with HRVic, I’ve had many extended conversations with Jenny on the subject of Hep C. It makes sense, of course, given that Hep C and its treatment is the raison d'être of The Hepalogue. Even before the bad news struck, we had often spoken on the subject of her own treatment – and why she appeared to be delaying it. One day, I wondered aloud if - perhaps unconsciously - she felt that a cure might somehow undermine her credibility as a peer, as a peer health advocate for PWID - that she would not be able to communicate as forcefully or as honestly to her constituency. Because, without Hep C, she would no longer be in the same boat. Because she would no longer completely share their concerns, their fears, and their pain… I saw the wheels turning in Jenny’s mind. She neither confirmed nor denied my contention, but I feel there is an element of truth to it. I find it difficult to imagine this level of commitment to a cause, to the wellbeing of others, to those particular, struggling, marginalised others for who Jenny has fought for so long - and who, by and large, will never know what she has achieved for them, and what tremendous sacrifices she has made. However, there are many – like me, I hope, and others in this sector, whether clients or providers - who do have knowledge of Jenny's remarkable achievements, and who will remain inspired to continue her extraordinary work. Jenny concluded her speech with ‘a few lines from John Berger,' one of her favourite poets. I'll finish up similarly: In that town across the water Where the dead take the census And there are no vacant rooms For his gaze occupies them all Where the sky is waiting To have news of a birth In that town which pours from the eyes Of those who left it There Between two chimes of the morning When fish are sold in the square And the maps on the walls Show the depth of the sea In that town I am preparing for your arrival The Golden Phaeton #jennykelsall #livercancer #INHSU #straight_shooters

DAAs have been around for long enough now for us to get a decent view of the post-treatment landscape. There’ve been some very positive findings. But also, some scary ones. I’ll begin with the good news. A review of successfully treated patients, who were yet to develop any significant fibrosis, has shown a very low rate of subsequent liver-related issues in the three years post-treatment. This is further evidence that the sooner treatment is embarked upon the better. It seems that, if you halt the virus soon enough, the liver has a chance to fully rejuvenate. As for those who have progressed to cirrhosis, Hep C treatment has significantly reduced the number of hospitalisations. Regarding diabetes 2, for which Hep C seems to be something of a risk factor, long term studies are showing that a cure reduces the likelihood of developing the disorder by a factor of three, regardless of any other risk factors (i.e. a high Body Mass Index). Another long-term study, cla iming to be the first of its kind, makes a strong case that the cure substantially lifts a subject’s general quality of life - as described by their general health, vitality, and ‘physical symptoms, such as pain’. In the medical game this is referred to as HRQL (Health-Related Quality of Life). Also addressed were issues such as ‘social-functioning, emotional roles and mental health.’ According to this research, most subjects improved to a level comparable to the general population. Hmmn. Wish I could include myself in this happy, happy group. But maybe things will improve… Thing is, it’s easy for some of us, myself included, to assume that curing Hep C automatically cures the liver. Am id the excitement of defeating the disease, it’s a forgivable mistake to make – but a risky one. Certainly, the liver has a near-magical ability to heal itself, but there are limits - particularly after what may have been decades of inflammation. A recent blog post from the magazine ‘Hep’ put the issue into stark relief, guiding our attention to some ‘unsettling’ research that may not be getting the attention it deserves amid the general atmosphere of celebration and optimism. It makes me feel queasy even thinking about this, but here I go ... Common sense (and a good swathe of evidence) tells us that the risks of contracting HCC (hepatocellular carcinoma – the most common form of liver cancer) decrease once the liver has been cleansed of HCV. Subjects who have not progressed to cirrhosis have traditionally been considered more or less exempt from risk of the disease, particularly after successful treatment. Until now, it seems... A recent study titled 'Increase in Hepatocellular Carcinoma in Hepatitis C Patients Without Cirrhosis' (by Sanath K. Allampati and colleagues) has analysed data associated with 2328 patients with HCC. They discovered that ‘liver cancer rates were trending consistently higher. Further, this increase was more pronounced in the non-cirrhotic group, increasing from under 10% to nearly 22%.’ The researchers expressed concern that patients cured of Hep C may be at a higher risk of developing HCC than previously believed. The results may be of particular significance to non-cirrhotic or near-cirrhotic patients who may have abandoned any surveillance of their liver health after being cured of Hep C. The take-away here, I would suggest, is to take your follow-ups seriously, particularly if your FibroScan or biopsy results have ever been on the high end. But, even if the worst comes true, more than a little hope remains. For example, BMS (Bristol-Myers Squibb) has developed a drug called Opdivo which, in more than half a group of 262, caused tumours to either shrink or stabilise in size. Who knows? Perhaps the mages of pharmacology are on the way to repeating the Hep C miracle with HCC? Speaking of miracles, aspirin never ceases to amaze. It has been discovered that, among people with Hep B, those on daily aspirin therapy are half as likely to develop HCC as those who are not. I don’t know if this has any relevance to HCV - and it’s probably irresponsible of me to suggest that it has – but it may be worth keeping an eye on any future aspirin research. Hold on though, I haven’t entirely finished with the nasty stuff. Researchers in Washington DC examined 101 subjects who had successfully completed treatment. They all showed significant improvements in fibrosis and liver enzyme levels - which ordinarily would indicate a liver well on its way to good health. Unfortunately, they discovered worrisome levels of steatosis or fatty liver disease - a condition which can be associated with Hep C and which would be expected to improve after successful treatment. The researchers warned that clinicians should be vigilant for signs of post treatment NAFLD (Non-Alcoholic Fatty Liver Disease) an illness not commonly monitored in those cured. On a quick reading, the subjects of this study did seem on the high-risk end for developing such a condition (Average age: 60, 90% with diabetes) but, regardless, this does seem to give us further reason to keep an eye on our livers post-treatment. The authors also made it clear that in no way were they suggesting that DAAs themselves were responsible for the worrying results. Indeed, these new longer-term studies do appear to confirm the safety of the drugs, placing any concerns directly on the liver itself and its natural response to the elimination of the virus. However, if you have - or have ever had - Hep B, you may want to take heed of a box warning instated by America’s FDA (Food & Drug Administration). Though the evidence is scant, the agency has erred on the side of caution, informing DAA customers of the slim chance that their Hep B may intensify or reactivate after taking the drugs. DAAs may have a near clean bill of health, but not so their predecessors – primarily alpha interferon and ribavirin. These drugs are horrible to take and there seems to be some suggestive evidence of negative effects down the track - though I should stress that nothing conclusive has been proven. Interferon-Alpha (most often injected in its PEGylated form) has been accused of sparking auto-immune conditions like psoriasis, rheumatoid arthritis and lupus. It is commonly linked with thyroid dysfunction, and is most often associated with major depression and other psychiatric issues. A friend of mine who is being treated for early onset dementia has no doubt in his mind that interferon is to blame. Ribavirin, which can inhibit the body’s ability to absorb oxygen, has its own suite of long-term issues, but, again, there is nothing known for certain. All I can suggest is that - if you were unlucky enough to have been treated with these ghastly substances - you should perhaps widen your medical surveillance to include the kind of nasties with which they have been correlated. Thank the heavens for DAAs is all I say. They’ve saved the day, and what’s more, there is better to come. It seems that the incredible cure-rate of the current crop is about to be eclipsed by even more potent molecules that are effective over as short a period as six to eight weeks. An example is Vosevi, Gilead Science’s latest offering. It comes as single pill taken once daily containing sofosbuvir, velpatasvir and a new substance named voxilaprevir LINK. The first two drugs comprised Gilead’s pangenotypic blockbuster Epclusa, the third adds power to the punch. Though it is intended as a salvage drug for those who have failed previous DAA treatment, Vosevi could likely serve as a stand alone compound with a cure rate over 99%. And, though a twelve-week regimen is suggested, it is possible that it only requires two thirds of that time to get the job done. So, on the whole, thus far, the post-treatment landscape looks pretty rosy. There’s every chance that a great many of those treated will never be bothered by their livers again - but there’s a caveat. Many of us will also need to keep a weather eye out for the well-being of our precious livers. Sadly, we will always be that little bit more likely than the average citizen to succumb to cancer, cirrhosis or, apparently, Non-Alcoholic Fatty Liver Disease. Remember those changes you may have instigated while you still had the disease? – avoiding alcohol, maintaining good hydration, getting enough sleep, managing stress and keeping a healthy diet? Well they might be worth continuing with, just in case. The Golden Phaeton.

Who on god's green earth would deliberately forsake cheap, effective, side-effect free treatment for a chronic, potentially fatal disease just because it involves a simple blood test? Of all people, shouldn't experienced users be utterly acclimatised to sharps penetrating their flesh? After all, wasn't it a needle in the first place that gave them the virus? To put it mildly, the medical establishment has an imperfect idea of what goes on in the lives and minds of injecting drug users (IDUs). Some make an effort to learn, but no amount of careful research will generate an entirely reliable view into a community which, for reasons of shame and legality, has been forced into secrecy. The average civilian often finds it difficult to accept (or even imagine) how having bad veins may present a barrier to hep C treatment - but for a certain small percentage of those with the virus it most definitely does. Thankfully, many in the hep C sector are making it their business to understand how unexpected factors like these may affect a user’s motivation when it comes to seeking treatment. Veins get wrecked from years of continual use - it's a fact of life. Blunt needles, corrosive adulterants, carelessness and suboptimal techniques all work to reduce a vein's usefulness. Sooner or later, it will collapse entirely, or be reduced to a hair-thin channel sheathed by leathery scar-tissue. What you see below is one poorly executed attempt at blood taking on a clean arm. By a 'professional' no less. Multiply this by thousands and perhaps you can imagine the results. If someone needs your blood - as someone will if you’re going to get treated for hep C - having ruined veins can be a nightmare. Your average phlebologist (a drawer of blood) typically deals with smooth, fat, virginal veins which offer little challenge. When presented with an experienced user who may have few, if any, accessible veins, things can quickly turn messy. It may have been years since such a client has given another person access to their veins. It may have been years since they've actually hit a vein, having been forced by circumstances to go the intra-muscular route. Yet, if it is necessary that blood be drawn, a fruitless, painful, somewhat traumatic process will often ensue. I have reasonable veins for someone of my age and injecting history, but over the course of five hep C treatments I have, more often than not, come out of pathology clinics feeling like a pincushion. These days, if I'm required to do a blood test, I feel apprehensive by default. Not enough to dissuade me from the process, but enough to make me feel leery and a little ashamed. But I’m one of the lucky ones. Consider a friend of mine: a user of many decades who began injecting (with some dedication) around the age of seventeen. His substances of choice included crushed pills and highly alkaline homebake heroin. Within five years, he began to have trouble finding a vein. His preferred site moved from the crook of his elbow to his hands, then to his calves and thighs, and sometimes his neck. Ultimately, he mastered the art of tapping small, hard to reach blood vessels in surprising places: like the vein which runs behind the elbow and which, with sufficient dexterity, my friend could reach with the aid of a mirror. These days, when he is required to do a blood test, it results in either the pincushion scenario or outright failure. Thankfully, there are options for people with such veins, but they can be complicated, sometimes extreme, and are not widely understood, particularly on the client side. When my colleague sought treatment for hep C, he was luckier than most. With the aid of a portable ultrasound device a cunning doctor was able to locate a useable vein. Other helpful devices, sold under names like Venoscope and Veinviewer use particular frequencies of light to highlight a patient's vasculature. In the most difficult of circumstances, blood can be taken (usually from deep veins in the upper limb) in a surgical procedure. Obviously, serious measures such as this could potentially deter some from embarking on the treatment process. Others, who may feel they've hit a brick wall when it comes to blood, may be encouraged - but a problem lies in the fact that too few know that such options even exist. It is worth noting also that some phlebologists are better than others. Some people simply have the knack. Others have refined their craft over the traumatised arms of hundreds of clients. All will be thoroughly familiar with their equipment. Knowing when to use a particular gauge of needle, or perhaps a 'butterfly' (winged infusion set) greatly increases the chances of a successful outcome. If a vein has poor flow, it is important to know that a classic needle and syringe is preferred over a vacuum tube - as the vacuum effect can sometimes cause the vein to collapse. I do not pretend to have an encyclopaedic knowledge of venipuncture techniques and equipment, but even a quick scan of the subject will tell you that it can be a complex art, and that finding someone who takes their job seriously can make all the difference. Gun phlebologists can be located by word of mouth but, as a general rule, are most often located in larger hospitals with a solid throughput of clientele, or in clinics dedicated to working with drug-users. In the latter environment, one is also more likely to encounter practitioners who are more likely to be caring and non-judgmental. At one clinic in Western Melbourne which specialises in treating IDU's, I was told that, of the hundreds they had treated for Hep C, only four had required referral to a hospital for 'venipuncture'. Good odds, it seems to me. HRVic is toying with the idea of compiling a list of recommended blood-takers, but it’s problematic - given that opinions will always be subjective and that the workers involved may not want themselves promoted in such a way. Still, stay tuned... For some clients, taking one’s own blood may be a solution, and an increasing number of clinics will allow clients to search for veins themselves. However, many clinics and hospitals will baulk at the idea, citing insurance concerns or, perhaps, a murky subconscious fear of role-shifting in a professional environment. Also, doing oneself may not always be the answer: once, when I was given this option, I suffered from performance anxiety and managed to significantly increase the puncture-count. Again, the location of clinics willing to let you take your own blood is something that currently can only be discovered by word of mouth. Of course, prevention is also an important aspect of this issue. If one wants to avoid problems in the pathology clinic, taking better care of ones veins (or what remains of them) is a completely sensible strategy that can protect one from more than just scarred veins but from nasty stuff like abscesses and septicemia as well. Most peer-based user groups in Australia (like HRVic) provide online vein-care resources for IDUs. AIVL is a good starting point, where you can additionally find information that will prove useful in the legit circumstances of a pathology clinic. For instance, being well fed and hydrated will definitely make your veins easier to access. (If you’re in a hurry ‘isotonic’ sports drinks will hydrate you faster than plain water.) You may also find that there is a particular time of day when your veins present themselves best – if so, do what you can to organise your appointment to fit. If possible, be relaxed. Keeping yourself warm also, even to the point of soaking your arms in warm water is helpful. Here’s a document with more tips. * The issue of bad veins deterring people from treatment is not something that has been subject to serious study, but I am broaching it because I've been surprised at the number of people it effects within my own work/social circles. Though certainly not widespread, I believe it is a real issue, and, in an environment where serious effort is being made to draw people into treatment, it ought to be addressed. I've brought it up with a fair few workers in the sector: some have taken it seriously, others have expressed doubt that it is of any real relevance. But consider this: the problem affects experienced users most, and these users are more likely to have hep C. It is not too much of a stretch to assume that, after decades of subprime medical interaction, these clients may have developed a dread of painful, drawn-out, often unsuccessful 'poke and hope' sessions - often made worse by perceived or actual stigma. There is little that is positive in having to strip down (sometimes under a disapproving eye) so that a search may be made for forgotten veins in obscure, sometimes embarrassing places. Many will be prepared to endure such experiences if it means access to treatment – but not all, particularly given that hep C is a slow moving chronic disease for which it is easy to rationalise treatment deferral. A poor situation for these latter individuals, clearly, but also in epidemiological terms. What is the answer then, for this admittedly small pool? Currently, to get treated, you need to supply blood. If you can’t supply blood, you can’t get treated. Thankfully, as the hep C sector looks to bring more people into treatment, more workers are willing to heed client concerns. I have had very positive conversations on the subject with workers, who, when appraised of the issue, began immediately to brainstorm solutions. One option is to minimise the amount of blood required. A finger-prick test/dried blood spot analysis would be optimal and clinical studies are underway, but it is not yet an accessible option. Some clinics, however, are willing to draw as little blood as possible on the fewest occasions. It is possible that the number of blood-taking sessions may be reduced to two: one to certify the presence of the virus prior to treatment, and one at the end to judge its effectiveness. In recent months, the introduction of the pan-genotypic DAA Epclusa has removed the need for genotype testing, potentially reducing the quantity of blood required. Additionally, I have heard discussion on innovative use of pre-existing technologies such as the paediatric tubes used to draw blood from infants. Really, it’s just a question of people being flexible and getting the job done, being prepared to find the right solution for any given client and, importantly, never to judge – for fear of shaming can be at least as painful as any needle prick. There is no doubt that IDUs will be far more likely to front for treatment in a caring environment free of stigma and discrimination, one where there is no chance of a frown at the sight of track marks and scars. The Golden Phaeton #blood #hcvTesting #

Who knows if the stain of stigma will ever be erased from the practice of recreational drug use. Probably not. At least not while it’s illegal. As I’ve said before, that illegality is pretty much a directive to our society from our lawmakers to practice discrimination. But it can be reduced. And apparently, there are efforts under way to achieve this. Governments have released policy documents addressing the issue, pronouncing their intentions to ‘eliminate’ stigma, yet thus far any efforts to address it seem piecemeal at best. The reason people are paying attention to the issue of stigma is Hep C (and to a certain extent hep B). It is thought that if IDUs – a large percentage of who are leery of any contact of an official kind – are treated with the natural respect accorded an average citizen, then they will be more willing to step forward for treatment. Whether or not this is true, we are in possession of a rare opportunity to utilise government resources to an end that might improve quality of life for a marginalised and often struggling section of our community. Not too long ago, when I was distributing promotional material for our Liver Tonic! event, I had an opportunity to see a cross section of contact points at which IDUs intersect with the medical establishment. These were generally the larger community clinics which provide pharmacotherapy and health care to a significant number of clients. I’d like to share some of my impressions, without being too specific. Some of these venues were white-walled and clinical. With potted plants, uniformed personnel and glass-fronted counters. The kind of places where one feels surveilled and subject to a long litany of regulations. Not quite ‘methadone mills’ but almost. Some were indistinguishable from any community medical centre in a poorer area, but an IDU seeking treatment at one of these places would be expecting at best a businesslike, rather than welcoming reception. Absent were any reassuring signs they would be accepted for themselves and not be subject to judgement. The tendency at these locations was for an unsmiling, dubious-looking receptionist to accept my Liver Tonic! posters and inform me they would find out from their superiors if displaying them was in line with establishment policy. At the other end of the spectrum, and thankfully more common among the ten or so locations I visited, were clinics which barely seemed like clinics at all. Places with smiling, easy-going staff, designated chill-out areas, garishly decorated walls, and stacks of HRVic’s Whack Magazine. It’s obvious that an effort was being made to put the client at ease. At these places, I would be greeted with genuine interest rather than incomprehension, and invited immediately to paper the place with my posters and leaflets. It’s clear which of these two species of venue is more likely to attract IDUs into treatment. The latter presents itself as a place for drug users, where a maximum effort is made to address their needs, while the former merely tolerates, tooling themselves against potential behaviours of the lowest common denominator. It’s no secret that some drug users can be difficult to manage and prone to anti-social behaviours. It’s a sad fact, but true. However, it doesn’t mean that all should be tarred with that same brush. If anything is going to deter people from seeking treatment, it is an environment which perceives them as potentially threatening, violent, offensive or unreliable, and which visibly guards against these things. It is a horrible feeling being viewed like that, and it is entirely understandable that people would shy from it. The signs can be subtle, perhaps only revealed via the atmosphere of the premises, but instantly readable by a person sensitised through long years of stigmatisation. They can also be overt, expressed through signs on the wall, or behaviour-related contracts. My own clinic probably falls on the less-welcoming end of the spectrum. It has a hoarding out front which mentions the word ‘addiction’, so even walking through the gate is something of a trial. But my doctor operates out of there these days, and I’m prepared to endure the place so I can continue to interface with a practitioner who knows and respects me. Last week, I popped in to collect my pharmacotherapy script. I go there only once every few months, so I’ve never really gotten familiar with the place, or its vibe. But I do tend to notice the unpleasant transformation from normal citizen in the street to drug-fiend in the clinic. When I entered, one of the receptionists was taking flash-photos of some of the clients. I almost backed out, but of course did not. I couldn’t. As I waited at the counter, he turned to me and asked for a photo. I shielded my face and replied, ‘very funny.’ It was the last place I wanted my photo taken, indeed I found it inappropriate that I would even be asked. After I sat down to wait, the receptionist assured me that they really did want my photo. I told him I thought he’d been joking, but nevertheless did not want my photo taken. It was only then that he handed me a printed sheet explaining that the clinic was seeking some kind of accreditation in the new year and required photographs of its clientele. I left it on the counter as I slipped in to see my doctor. If you don’t understand why being asked for a photo in such a place is a disturbing thing, let me assure you my reaction was visceral and unpleasant. I’m sensitive about my drug-history, particularly in the official setting of a doctor’s surgery. I felt stigmatised, straight up, and it’s a horrible feeling. If I get asked again, I’ll tell them I’ll agree to a photo after my local civilian GP makes the same request. There are circumstances in which photos are required - in fact the clinic already has possession of a photo connected with my pharmacotherapy program - but to demand one in public with no explanation evinces a basic lack of respect. Later in the day, I was shopping with my daughter and dropped off one of the scripts I’d acquired earlier at a nearby pharmacy. When I returned, I was informed that unless I wanted them to contact my doctor, I could only have it filled at the pharmacy designated on the script. I was confused and surprised. I thought there’d been a mistake. What if I’d been out of town? I imagined all kinds of circumstance in which I would not have been able to obtain my medication. Now, the script in question was for valium, a drug I use for anxiety and as an occasional sedative. It is a benzo and as such can be associated with dependence, but for me it has never been more than a very useful medication. I compared this valium script with another I had been given that day, this time for a drug with no ‘potential for abuse’. This second script made no mention of a designated dispensing pharmacy. By this stage, I was already irritated and angry. I thought I knew why this was happening. The pharmacy named on the script was where I pick up my monthly supply of suboxone (I’m lucky enough to be on a low maintenance program). I immediately suspected that because I was on opiate pharmacotherapy, it had been assumed I would abuse the valium and should obtain it from a pharmacist familiar with my situation. No matter that I have never been addicted to benzos, nor am likely ever to be. No matter that it is a drug which any regular person can obtain from any pharmacy they prefer. Again, that feeling of being judged. The stigma feeling. You can’t mistake it. Worst of all, no one had bothered to inform me of the change in conditions. No one had assessed my case and used it to make a decision – it had happened automatically. An assumption had been made, a poor assumption, and I believed I knew then why my (very caring) pharmacist had asked me on several occasions if I wanted my valium dispensed daily from the ‘booth of shame’ where clients line up for their pharmacotherapy. I’ve inquired a little about it since. There appear to be government guidelines suggesting such a thing, but I’ve never been subject to it before and I was not informed of the change. However, if you want an example of how stigma can infiltrate the life of even a stable, ‘low-maintenance’ client, this is a fine one. All up, it was an unpleasant day. I intersect so rarely with the system that I can sometimes forget how the system regards me, and I could really have done without its opinions. These stories may give you some idea of how relatively subtle things can trigger a feeling of social exclusion and judgement. Stigma is a slippery, insidious hydra. It can never be slain, but it can be suppressed with increased awareness, thoughtfulness and care. The Golden Phaeton P.S. If you want our opinion on which are the best clinics to attend. Just give us a call. #stigma #PWID #IDU #drug_use

The Cochrane Collaboration is an independent, international group which performs systematic reviews of medical trials to eliminate bias and identify poor design. They are very well regarded and, at least until now, have provided an impartial lens on the efficacy of medicines, reducing the distorting influence of researcher bias, and spin from big-pharma and the alternative health sector. Recently however, to immediate outrage, the Cochrane’s Hepato-Biliary Group dropped a massively contrary, some would say bizarre review of the direct acting antivirals (DAAs) which are currently curing thousands of people of hep C in Australia. After assessing 138 randomised clinical trials of 51 different DAAs (a large percentage of which did not reach market) they declared that there was no strong evidence that the treatments led to ‘improved survival and fewer complications’. This is another way of saying that there is no confirmed effect on morbidity and mortality. Another way of saying that the drugs don’t work. This, of course, is nonsense. Very unhelpful nonsense. Because Cochrane is so respected and influential, there was some shock at the announcement. This was followed by a no-holds-barred global response from practically everyone involved in the treatment of Hep C. In a reply from a group of Australian specialists, Dr David Iser described the report as ‘factually incorrect’. He pointed to the short term nature of the studies reviewed and the futility of attempting to derive long term outcomes from something not designed to assess such outcomes. ‘Patients should not be swayed by this flawed report and should not defer seeking treatment based on this study,’ he said. The Cochrane review does highlight the short follow-up periods of most of the studies analysed, but pushes ahead with its scepticism regardless. From my humble position, as a lay person in the matter of statistics, it seems obvious that their work was premature. In five years, perhaps, such an effort may prove useful, once there is actual longitudinal data from which to work. More than once have I heard people express curiosity on the long term effects of DAAs, but there will be a time for that investigation, and that time is not now. The simple truth, to quote Iser again, is that  ‘there is abundant evidence that SVR following treatment of hep C improves survival, and reduces deaths from cirrhosis and liver cancer’. The real world truth, plainly apparent to anyone working in the field, is that the treatment is tremendously effective, and I wonder if the people at the Cochrane Hepato-Biliary Group may somehow have lost themselves in a whirlpool of statistics and forgotten to peek out the window of their ivory tower. Their review even contains an element which borders on absurdity. In the past, researchers from Imperial College in London performed a systematic review of 31 studies assessing the survival rates of people on the older peginterferon/ribavirin regimen. They concluded that, if treatment was successful (as it was a certain percentage of the time) they could expect to have their risk of death reduced by 50-80% over five years. One of the authors of this review responded to the Cochrane Collaboration by inquiring if they thought ‘that being cured of hepatitis C by the new drugs is somehow different ... to being cured by the old interferon-based treatments... For most experts, curing Hepatitis C should have the same clinical consequences, no matter what treatment is used....” Another strange inclusion to the review reads thus: it is questionable if an eradication of hepatitis C virus in the blood leads to no hepatitis C in the body. I wonder if this may harken back to the time when owing, I think, to some anomalous blood test results, it was theorised that the virus may find hiding places in the thyroid gland or in muscle mass. It seems irrelevant today. There may still be the occasional false positive caused by - it has been ventured - dead virus particles in the bloodstream, but to date, I know of no cases of the virus suddenly reappearing down the track from some hidden reservoir in the body. The review also pointedly refers to the high price of the drugs, seeming to imply that their value may have led to undue pressure from pharma companies on the operation of the studies - which Cochrane describes as low quality and at ‘high risk of bias’. Certainly, these are concerns, and no one is saying that expensive pharmaceuticals have never reached the market without proper investigation, but in the case of DAAs they have chosen the wrong target. Whatever the processes used to assess the drugs, the horse has bolted. All the evidence we need are in the their spectacular results. At the time of writing most of the furore has died down, but I do worry that this Cochrane report may turn out to be a time bomb. Because of the organisation’s respectability, it is often used by governments to decide whether or not to fund treatments. This creates a risk of swaying the opinion of cautious decision-makers, leery of forking out large sums to treat hep C with DAAs. It is not unimaginable that a life-saving decision could turn on the contents of this review and as such it is not merely a deeply flawed document, but a tremendously irresponsible one as well. The Golden Phaeton #hepalogue #bigpharma

World Hepatitis Day 2017 is looming. Last year at this time there were all manner of hopes and expectations around the new hep C treatments and a great deal of excitement. Well, it’s a year down the track now, and a lot has been achieved. Over 30.000 Australians have been treated, and the health sector has geared itself up to maintain a high rate of new treatments. As for myself (as you’d know if you’ve been reading this blog) I’m clear of the virus and facing the world with that particular health issue well and truly squared away. Looking back, it feels as if I was living a different life. When I first began seeking treatment, a specialist told me – with brutal frankness – that if no effective treatment was forthcoming, I would be looking at several decades of hepatic deterioration and then liver cancer at, oh, about the age of sixty. I carried that gloomy forecast around with me for a good portion of my life. No matter how good thing got, they were always shaded by my apparently inevitable doom. And if they were bad, well, having the virus made them just that little bit worse. But all that misery is in the past now, and World Hepatitis Day seems like it might be a good time to celebrate. I also suspect that I may not be the only one who feels like it’s worth having a grand night out in the name of our virus-free livers. The reason there hasn’t been much movement at The Hepalogue lately is because, with my colleagues at HRVic (and music identities Lisa Gibbs and Rob Wellington) I’ve been organising a spectacular event going under the name of LIVER TONIC! It’s to be held at Memo Music Hall on the evening of Friday July 28th, World Hepatitis Day. We’ve gathered together a terrific musical line-up to showcase on the night because, let’s face it, the music industry and, in particular, our world-renowned alternative scene, suffered heavily under the virus. The line-up is on the poster that’s included in this post and further details are accessible on the Memo site. Whether you’ve been cured or whether you’ve been doing the curing, if you’re thinking about getting treated, if your friends or family have been touched by the virus, or if you just want to be there for the music – all are invited to share the love. To book, go to the Memo Music Hall website  and take it from there. Tickets are $15 (general admission/standing) and $20 (table seating). Group bookings are possible and, naturally, we’re encouraging them. If you happen to be an HRVic member (individual not institutional) you’re eligible for a $5 ticket (!). We’ve sent out emails with a promo code you can use on the Memo site. Go through the normal booking process and in the checkout section you’ll be able to enter the code and your ticket prices will be reduced. (Unfortunately, for bureaucratic reasons, you can’t get the discount if you just rock up at the door on the night). If you haven’t received anything from us, give us a ring on 9329 1500 and we’ll sort things out. And, if you’re not a member, you might consider this a good time to become one! To quote Saul Goodman (from Better Call Saul): When we win, we celebrate. This past year has been a win for the ages. Lives have been restored. Lives have been saved. So let’s celebrate! Book now, and I’ll see you there on the night. The Golden Phaeton #livertonic #hepalogue #HCV #liverhealth

Month by month, the various scattered parts of my life seem to be gathering into a recognisable whole. I'm not happy today, but at least I'm not miserable and in bed. I wasn't particularly happy yesterday, but at least the house was clean and I had some idea of what the looming week would hold. I’m loathe to use new age buzz words, but 'rebirth' is about the only term I can think of to properly describe what’s happening to me at present. I'm physically healthier for sure, and more inclined to work on my physical health (with various degrees of success). But most of the change seems to be happening in my psyche. My head has been cast adrift from the diseased mooring that was hep C, and suddenly the world is full of options – most of which I would not have dared consider given my previous ramshackle condition. At times, I even feel a little unhinged … but in a good way. Only after the departure of hep C did I realise how large a part it had played in my life. How it had defined my identity, even my personality. Years of abnormal liver results, necessary nanna naps, the perennial brain fog, and a swath of symptoms so vague that they only revealed their existence when the disease was gone. I recorded an interview last week with another hep C survivor, and it really was astounding how our post-treatment experiences matched across the board – although our personal journeys had been very different. She was cured a couple of years before the new treatments became widely available and her experience may provide something of a portal into the future for the rest of us, as well as some alternative ideas on liver health. - Where do you think you picked up Hep C? ‘Well… Through my late teens and early twenties I experimented with lots of different drugs. I was a sporadic injector and that’s how I must have got it, though I never shared a needle - at least not consciously…’ 'This was the early 90s, I'd only just moved to Melbourne from country NSW and I was very naïve. I hadn't heard of hep C. But I do remember picking up some government information that said that if you clean the syringes in, um... - Bleach? ‘Yeah. Or vodka.’ - Vodka? I missed that bulletin. ‘They said white spirits would sterilise used needles if there was nothing else available.’ - The 2x2x2 thing? 'That's right.' (Back in the day, when fresh needles were less available, there was government approved advice on the use of bleach in sterilising used syringes. Two flushes with water, two with bleach, two with water. You don’t hear of this much these days and NSPs tend not to bother with bleach - but in extreme circumstances it remains an accepted option.) ‘That was the literature available at the time, but I didn't have much to do with that end. My boyfriend was in charge. Syringe availability was pretty low, even in St. Kilda where we lived, so we kept the syringes with our names marked on them.' - How did you do that? 'Just with a pen...' - Did you get, like… sticky-tape and a little rectangle of paper...? 'Yeah, or a little bit of bandaid... But I think somehow there must have been a mix-up. That particular boyfriend was co-infected with hep B, but I never caught that. Go figure. No idea. So really I can’t tell you exactly how I got hep C.’ - Every disease is different, I suppose. Perhaps the circumstances were that little bit more amenable for the hep C... 'I was a vegetarian at the time. I was pretty run down and getting sick a lot.' - Because you were a vegetarian? 'I wasn't doing it properly. I was young, not long in Melbourne... ' - So the drug use was happening in a relationship context? 'Yeah. The typical gender pattern of injecting drug use. I've read articles about it. Often it's the middle class boy who will go out, get the drugs, then administer them to the lower socio-economic or country-regional girl…' - Interesting... So they've done studies on that kind of thing? 'Yep. Gendered patterns of drug use.' - I can't say it rings all that true for my drug-based relationships. Perhaps I was just too lazy to get up and go meet the dealer... At this point the conversation is interrupted by the horrendous yowling of a cat. - That's... Marigold? 'No. That's Daphne.' - Alright. So you figure you caught hep C during the early 90s. When did you actually learn that you had it? 'Pretty soon after. It hit me acutely. I got a really bad flu, and I'd never had the flu before coming to Melbourne. I was very very sick. My eyeballs started going yellow. Then the rest of me went yellow. Then my hair started falling out...' - Wow. How much of it? 'About... a third? I had no idea what was happening to me. I went to a naturopath in Acland St. who suggested I might have something wrong with my liver. Then I visited a dermatologist to have something burnt off my skin. He ran some tests and told me I had “a bit of a flu on my liver”.' - How quaint. And Victorian. 'Yeah. So, he'd actually picked something up, but didn't bother doing any further investigation. It wasn't till later... I'd been to a wedding and gotten myself really drunk. Afterwards I was horribly sick and feverish and I went to a GP in Nth Fitzroy. She ran some tests and told me I had hep C. And that was basically it. No counselling, no advice. Nothing.' - So, it's 92. They don't know much about hep C and there certainly isn't much treatment infrastructure around. Interferon is becoming available but it's a shot in the dark. How did you respond to the news? 'I was extremely distressed. And angry - I thought it meant I couldn't ever have a child.' - Really? 'Yep. I was clueless - So no one filled you in as regards the actual nature of the disease? And its potential severity? 'I was told nothing. They just referred me to St. Vincent's where I saw an old doctor who wanted to put me on interferon. I had a different boyfriend by that stage, and it was on his recommendation that I refused the interferon. He said – don't do it. And I didn't do it. - Was it just on his word? Or did you look into it a bit? 'Both.' - May I ask what genotype you were? '1a.' - So you would have been looking at about a 20% cure rate... 'Uh-huh. I also remember seeing a letter which that specialist wrote to my GP... a different GP... “Blah Blah is a twenty year old woman with a history of injecting drug use and 'x' number of sexual partners...”' - Embarrassing... 'That's where it started. That's where I first glimpsed the stigma. After that I just disengaged from the system and went alternative. I started visiting a natural therapy centre in St Kilda which was attached to a drug rehab...' - I'm guessing Windana? 'Yeah. Windana. I got better support there, and information. I embraced Chinese medicine. I curtailed my alcohol use - not that I was drinking much at the time. And I did my best to stay off drugs, with mixed results... 'But, still, when I went to other doctors about the hair loss and other symptoms, I was basically dismissed. I was dismissed by everybody in the mainstream system. They were like - but you've got a full head of hair! And I was like - I've lost vast amounts! And they were like – No! Hepatitis doesn't do that.' - You felt certain it was the hep? 'Yes! It started during the acute phase. It was probably the shock to the body.' - I lost a huge amount of hair when I was on interferon. Months later, I was still finding masses of it under my car seats... 'And I noticed something with my skin. If I got a little cut or something, it wouldn't heal as fast as it used to. That was one of the first things I noticed. That and the ridges on my fingernails.' - I was hoping my ridges would disappear once I was cured... 'Mine haven't gone either.' - I've been reassured on facebook that it's an age-related thing. 'I got them at twenty. Right when I got hep C.' - Mine started when a drunken Russian slammed my little finger in a carriage door on the Trans-Siberian Express. It was only when the ridges started appearing on other fingers that I blamed the hep C... So, with the Chinese Medicine... Did you do the whole thing? The whole brew up of horrible, unidentifiable... 'Totally did that. When I could afford it. For twenty years. Actually, the first Chinese doctor I saw told me he could sense I'd had a hard life and gave me the herbs for free... What a nice person he was... 'I must have tried every natural and alternative therapy there was. I became very interested in all of that.' - Could you describe some of it? 'Oh... various forms of psychotherapy, reiki, acupuncture, shiatsu massage, aromatherapy, Feldenkrais, yoga, swimming, basic exercise, kinesiology, NLP (Neuro-Linguistic Programming). I took milk thistle for 22 years and I really think that helped…' - I guess, in the absence of any bona fide medical treatment, a lot of people explored alternative routes. I know I did... 'And “The Journey”.' - Is that like The Secret? 'No. It's The Journey. - Is it related to The Secret? 'No.' - Is it... more legit? 'Um...' - Or less legit? 'More legit.' - So, moving on. If you hadn't had hep C, do you think you would have embraced these alternative modalities? 'Probably, but not to the extent I did. As a young person I was interested in a lot of that stuff. Carlos Castaneda. The Orange People. Pot smoking. I was interested in different ways of being, different experiences, ways of thought... but it sort of changed when I came to the big city… - The big secular thought machine... 'Yeah.' - Over time, how did you feel the impact of the disease? 'I felt very tired. Very often. I'm kind of grateful I caught hep C at the age I did because my youthful energy helped propel me along. I hate to think of what it must be like for someone in their forties… 'What I remember most is the tiredness. I might be having a good day, doing a lot of things, and then suddenly it was like someone had pulled out my batteries. A sudden crashing fatigue.' - I've heard that a lot from people. 'It felt like I went to sleep and then didn't wake up again until I was cured. Every morning I'd wake up to this thick head…' - Brain fog? 'Brain fog. Every single morning. For twenty something years. And it affected my mood. I became irritable. And that affected my relationships, my work... It affected everything.' - Do you feel, because you had hep C for so long, it was difficult to tell the effects of the disease from those of ageing? 'People would constantly be telling me it was just ageing. But because I was a young person, I think I could tell the difference. I had to have naps at about two in the afternoon. I'd just crash. I'd get my son from school, then I'd lie down and read while Play School was on…' - How old were you when you had your son? 'Twenty-five. And on top of that, somehow, I still managed to bumble through and finish degrees and hold down jobs. But now, when I look back, through my work, my websites... I can see the effects of the illness.' - So you always worked? 'Yeah. Though in the early days I was a student. I just did what I could to keep my life and my health together. I was very diligent with my diet. Remember that liver-cleansing book? - I do. Sandra Cabot. It was more of a liver-cleansing bible. 'Everyone got into that. Hospital liver-clinics were recommending it ...' - She turned out to be something of a charlatan, didn't she? 'Yeah, a fraud.' (TGP- Though there was nothing inherently wrong with the sensible eating plan described in her book 'The Liver Cleansing Diet', Cabot went on to create a New Age health business trafficking in faddish, often dubious products and ideas.) 'I kept up with the alternative stuff, even though my friends and doctors assured me it wasn't going to make any difference to the disease itself. And from time to time I'd attend a liver clinic, first at St Vincent's then The Alfred, but I found them too patronising, too condescending – though I’d like to think they're different now... 'I'd see people in the waiting area, and they'd be like - what's your ALT? And I'd go – 90, whatever. And they'd go - mine's 55. And I'd go - I'm just not worrying about it. And they'd go - oh, really... 'It just wasn't me. It wasn't my identity. - Did you bump into people you knew? In those waiting areas? 'Yeah, but they weren't really my friends. They tended to be a lot older, and from a different scene. I'd stopped taking drugs, and was trying to avoid having much to do with people for whom drugs were still a part of their lives. It was how I moved forward. How I sought to build more into my life. 'Eventually, I gave up going completely. I left the system. I'd see my GP, who was very supportive, and who supported me in avoiding interferon.' - So... you didn't want to burden yourself concentrating on a condition you couldn't do much about? Best to just be healthy and forget about it? 'Basically. I'd still get the odd ALT result. They were always bad, always high.' - Over a hundred? 'Often. I think the highest I had was something like 396. That was after I'd fractured a bone in my foot.' - Which would probably have contributed… 'That's what the nurse said. I guess my average was about 110, but paradoxically, when I had a FibroScan down the track, there wasn't much liver damage. - When did you first hear about direct-acting antivirals? ‘Years later. Through a close friend who was co-infected with HIV and Hep C. We’d talk a lot about our health and he gave me a heads up on these new drugs in the pipeline. But nothing happened for a while, though I did keep my eye open for new research. ‘That same friend convinced me to go back and visit a specialist. These were the mid naughties, and after seeing her I’d just want to go out and get drunk...' - So someone in your life was encouraging you to keep open a line of communication with the health system? ‘Yeah. But this new specialist was just wrong. She really stressed me out, made me feel really scared. She was just the wrong personality type. ‘Then, through a friend of mine who worked in medical research, I found another specialist, and he was fantastic. He was calming. He was the right personality type. And he bulk-billed in the private system.’ - This is still prior to the arrival of DAAs? ‘Yes. And it was through him I that I really became aware of them, that there might be a real cure on the horizon. I started mailing doctors and academics overseas in an effort to find out when they would be available, and how much they would cost.' - That’s really proactive... ‘I tried to get on drug trials - even American drug trials. I was listed for some, but I was always way down on the list. I wasn't sick enough, according to them... 'I concentrated on the UK because it seemed as if the drugs would be released there first, but it turned out to be America. Then, through my specialist, I got in contact with an ex-pat Australian doctor in San Francisco... - Which drugs exactly had become available? ‘Sofosbuvir (Sovaldi) and Simeprevir. - Before Harvoni? ‘Yes, this was before Harvoni. I investigated the legalities of importation and learnt that you can bring in up to three months’ worth of medical treatment for personal use.’ - And, the obvious question. What about the money? These drugs are very expensive. ‘I was fortunate enough to have... benefactors. I was really lucky. ‘So my contact in San Francisco wrote the script, sent it to the local Walgreen’s Pharmacy, and they posted it here, and I just took it.’ - I’m assuming your specialist here was in the loop? ‘Completely. At that time they were still recommending ribavirin be added to the mix. Apparently it increased the cure-rate by 3% or something. I used it for six weeks and had some dreadful side-effects. - What kind? ‘Really severe chemical depression. And anger.’ - Breathlessness? Anaemia was my problem with ribavirin. ‘Yes, I became anaemic. I actually had to have an iron infusion.’ - Your specialist took you off it? ‘Immediately. I contacted the hospital. It was after-hours and initially they were reluctant to page my specialist, but I let them know which drugs I was taking, and that I felt like I was falling down a mineshaft. They were very understanding. 'The specialist told me to throw the ribavirin in the bin. It took about three days for the side-effects to recede.' - For the record, I was treated by that same specialist and I’m in total agreement with your positive review. He's very calming and reassuring. You tend to really trust his judgement and, what’s more, he’s open to all avenues of possibility. So, after commencing treatment, when did you first notice a difference ...? ‘I can remember to the day; it was a Monday morning. I opened my eyes and it was like – gone. It was something truly amazing. ‘That day I went to meet a friend for coffee. I told her - I think it's gone, and she said - I can see, I can see it's gone. That was just amazing. ‘But I still kept it really low key until I got the official results.’ - In medical terms, how did your treatment progress? ‘I was clear at my four week blood test. My ALT was 29.' - What do you think your friend saw in you that day? What change do you think she saw? ‘It was something about my eyes, she said. They were brighter. She mentioned an alertness… I mean, I guess I'm a reasonably bright person anyway, so people who don’t know me well might not have noticed the difference... 'There was an employer… I’d come to her seeking a reference and happened to disclose my medical history. She was surprised. She said she would never have known. On the other hand, there were people in my immediate family who told me my personality had completely changed. ‘It was a lightness. A brightness... ‘The energy levels I have now are … hard to believe. I constantly wonder if this is what it’s like to have normal energy… I used to get so very tired...' - I’ve found that it’s a bit of an up and down thing. One week I’m feeling marvellous, the next not so marvellous. But there’s a general upward trend, and I never have those weeks when I feel close to dead. ‘I’m getting these increasing increments of health … At deeper and deeper levels... And it’s reflected in my behaviour. When you have a serious long term illness you adapt your behaviour to cope, and since I’ve been freed from the disease I’ve felt myself unravelling those layers, finding a path back to normal. I think it's related to what they call neuroplasticity.' - I sympathise with that one hundred per cent. ‘Layers upon layers. Of health.’ - It's quite incredible. Is this... this is rosehip tea, is it? ‘No. Normal tea. - It doesn't look like normal tea. It’s... red. ‘You poured it into your wine glass.’ - Oh… Okay, my mistake. Where were we? ‘If you've had a disease like hep C for a significant portion of your life, it becomes part of your psyche, part of who you are. So, when it leaves your system, not everything happens at once, there’s slow adaptation over time.' - The traces it leaves aren’t just in your liver, but also in your head. And they take time to heal. What’s your healing process been like? ‘Well, we talked about the initial high, and the associated surge of energy… For me that surge flattened out after about six months. Then it mounted and surged again, and then again, in three to six month increments. At some point I developed an inner awareness of this pattern. I was thinking, okay... I’m physically well… my post treatment FibroScans show absolutely no damage… no scarring... so I figured my liver was pretty much out of the frame. Anything left had to be in my head. 'But my specialist had told me that that it can take up to two years for the liver to fully heal, so I decided to start taking cannabidiol oil, to hasten the process of regeneration. It's said to have great effects, particularly with the the liver. I highly recommend it.' - How long since you've been cured now? Over three years... - Well by now that CBD oil must be working on the last bit of the last one percent … 'Possibly, but remember that FibroScan results are never 100% conclusive… And also, I heard the other day that they're not going to to know for another five years whether there'll be any long term effects from the DAAs.' - Bad ones? 'It's unlikely, of course...' - So we all might come down with some incredibly rare cancer? Or become zombies? 'Well, at least we will have had a few good years, no? Got a lot done.' - I've been experimenting with something called cranial electrotherapy stimulation. It's supposed to help with mood disorders and insomnia. The electrodes run from your ears to a device called an Alpha Stim which sends a pulsed microcurrent through your head... 'I must look that up...' - Thing is, it actually seems to work. Though I do worry about my brain in the long term. The US military is using it, apparently, but that doesn't say much for its safety... So, any last words to add on the hep C front? 'Did I mention how much my gums have improved since I've been cured?' - No. 'Well, I've had a very noticeable improvement in my gum health.' And here, on the twin topics of gum health and cranial electrotherapy stimulation, I'll end another tale of a life rescued by the new hep C treatments. The Golden Phaeton #HepC #hepatitisC #hepatitis #transmission #treatment #liver_health #