What I write in this blog is aimed at everyone with a stake in the treatment of Hep C. If you’re reading this, that’s probably you, whether you’re getting/thinking about getting treatment or reaping the benefits of it; whether you’re administering treatment or researching it in some way. You’re engaged. In some way you’re a part of the effort to rid our shores of HCV.
But the demographic with highest stake in the HCV elimination effort – current injecting drug users – is, generally, not so engaged. This, of course, is the pool in which most of Australia’s Hep C resides, and the primary vector of transmission and reinfection.
HRVic (The home of this blog) is a peer-led drug-user advocacy organisation and its core operations involve continuous interaction with the drug using community, largely the injecting drug user community.
Now, usually I operate from home because my functional hours can be unpredictable, but recently I’ve been spending more time in the vicinity of the offices. This is partly because, quite apart from this blog, I’ve been fiddling about with a program to remove a particular barrier to treatment involving blood-taking and damaged veins.
In the course of this effort, I’ve been reminded, quite forcefully sometimes, that Hep C treatment tends not to rank among the many concerns of current PWID. Let me note here that I am not really speaking of the more stable variety of PWID – elder users, say, on long term pharmacotherapy maintenance who may inject once or twice a fortnight. I am speaking particularly of those with a clear and present dependence, who may be in constant crisis as they butt up against the institutionalised prejudice of our society.
Because of HRVic’s close-up contact with this core demographic it is often suggested that information regarding Hep C treatment might be distributed or important data obtained via HRVic programs. But there is an issue here. The people who HRVic deals with tend to have current, often overwhelming concerns which make discussion of an invisible virus which may or may not kill them decades down the track somewhat pointless.
Consider: they may be trying to regain/retain guardianship of their kids, they may have other serious legal problems, they may have no place to live, they may not be able to obtain a pharmacotherapy dose due to some dispute or mixup with their providers. They may be trying to find a rehab or detox when such resources are as rare as hen’s teeth. They may be in the febrile nightmare of withdrawal. The list goes on.
It would be pointless, even counterproductive, to jam information down the throats of PWID at a time when that information is effectively irrelevant, or to threaten their trust in important lifelines by weighing them down with a researcher’s questionnaires.
So how do we work to free this demographic of HCV? How do we better learn about this demographic so that treatment can be more effectively made available? With care, respect and intelligence, obviously. And with forethought.
It’s a year now since the new treatments arrived, and initial wave of consumers is easing off. The low-hanging fruit are gone. We will, if we haven’t already, hit the wall which highly active PWID represent – and it is important that the strategies we use to deal with it are effective.
‘The responsibility lies with the health provider, not the injector,’ she said in clear terms.
To paraphrase her following point, when a doctor, still mired in the stigma and discrimination surrounding IDU, tells a patient that they are ineligible for treatment because they are drinking or using, they are not only discriminating (‘I think doctors can do pretty much anything they like’) but giving up an opportunity to treat a person (and possibly their friends) who, on the odds, will be part of the group most likely to transmit the disease.
(NB: With both the old interferon-based treatments and the new DAA-based ones there is no evidence that alcohol or drug use affects the outcome.)
This is a perfect example of how counterproductive stigma can be and thankfully this scenario, though not unknown, is rare.
Hellard also talked about the provision of clean injecting equipment, particularly with regards the creeping in of complacency now there is a sure fire cure for Hep C. ‘Users prefer fresh injecting equipment; I think that’s a fact.’ Again to paraphrase – instances of sharing of course still happen, they are inevitable, but the spread of the disease will be slowed if clean equipment is made as accessible as possible, and if as few as possible of those sharing are actually carrying the virus.
Part of my take-away from this was the importance, epidemiologically, of understanding using habits and then designing solutions based on that knowledge, over actively striving to change what may be long-term, ingrained habits.
Taking this a step further, I would point to society as a whole. The vast majority of the crises experienced by highly active PWID are set in motion by our society’s overarching opinions on drug use – which are set in stone in the form of drug law.
As I’m sure I’ve said before in this blog, it is obvious (I think to more than me) that stigma will never be properly defeated without drug law reform. There will be no deep-seated change in attitudes without drug law reform. That’s the wide view, but if broad strokes are taken and succeed (such as the policy of the Victorian Government to eliminate Hep C related stigma.) then, beyond decriminalisation, a multitude of pointless discriminatory restrictions and annoyances might evaporate, and the burdens currently built-in to PWID’s interaction with society might be eased.
A new generation of health providers might emerge who, for example and again to draw on what Margaret Hellard said yesterday, when presented with a bloody urine sample in an emergency department will react as a health provider ought, rather than cast a suspicious eye on what think may be an opiate-seeking ‘drug addict’.
In this fantastical stigma-free utopia, if information is presented respectfully and unobtrusively, if the process of treatment is as streamlined and non-judgemental as possible, current active PWID – now delivered from a crisis-as-usual lifestyle – may be able to focus their attention on hep C treatment.
If we don’t, somehow, turn the capital created by our miracle cures into real systemic change, then we will be doomed to chip away at the problem of this difficult to reach group in a process that, I expect, will take a lot longer to complete than we expect.
I stand, hopefully, to be corrected.
The Golden Phaeton