The Missing Masses - 160,000-plus Australian ‘Ex-Users’ Still Have Hep C. How Will We Treat Them

(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