World Hepatitis Day proved to be something of a talk-fest, at least for me. I nearly filled an A4 spirex with notes. And I learned, finally, after a frustrating number of failed Google searches, that the 28th of July was chosen because it was the birthday of Baruch Samuel Blumberg (1925-2011).
Blumberg was awarded a Nobel Prize for his identification of the Hep B virus (via the discovery of ‘a surface antigen in the blood of an Australian aborigine’) his development of a diagnostic test and later a vaccine – the patent of which he donated to the public domain.
Through all the speeches that I watched, there was a common theme – or, more precisely, a common spirit. One of excitement, of celebration, of victory. The Federal Government’s brave (but perfectly reasonable) Hep C policy initiatiative is underway and is bearing fruit. Though only (how many per cent?) have been treated and/or cured thus far, the machine is cranking up and the future appears bright.
What’s more, our understanding of the disease is so highly developed that the drugs which are currently saving lives may seem trivial once we have access to what is coming down the pipeline. In Spain recently, people were cured with one or two injections.
In Footscray, at the launch of StreetShot (a Hep Victoria promotion using ‘photography to raise awareness of hepatitis transmission among young people’) the Victorian Government – in the person of Parliamentary Secretary for Health Mary-Anne Thomas launched new strategies for both Hep C and Hep B.
.Mary-Anne Thomas with Melanie Eagle, CEO of Hepatitis Victoria, on the right. (Please forgive image quality.)
I’ll concentrate on the C, at least for now.
As far as policy statements go, it was actually quite extraordinary. Our state government’s aim is ‘by 2030, to eliminate hepatitis C as a public health concern and eliminate stigma and discrimination associated with the disease’.
Amazing really, particularly if you were reading this as little as a year ago.
Clearly, the politicians have drunk the Hep C Kool-Aid – and I mean this in the nicest way. And with all the enthusiasm in the world.
When the Federal Government made their big announcement back in March there must have been a lot of nerves. There was a huge amount of money involved and no statistical defence or advice from experts in relevant fields could have entirely allayed the fear of stepping out into unknown territory.
When Peter Garret launched the housing insulation scheme late last decade, it may have felt like a shoe-in. In one move the initiative would reduce energy emissions and stimulate a damaged economy. Two birds with one stone. But the government didn’t count on shonky, opportunist contractors whose actions allowed the media to rain down hell on the Federal Government.
There’s no way of saying for sure what lies ahead when you’re sailing uncharted waters. As it happened, the Hep C policy has been a resounding success, praised by all, both within and without Australia. (Indeed, it was mentioned in one speech that other countries are attempting to emulate Australia’s Hep C response, particularly our deal with Gilead.)
Thursday’s policy announcement amounted to a kind of ‘I’m Spartacus!’ moment. Given heart by the Federal’s bold, effective first move, and by general air of optimism and encouragement, the State government has doubled down on the Hep C issue.
It’s a rare example of a government taking a clear a clear and straight path to an absolute good.
They’re not being distracted by irrational or moralistic concerns. The epidemiologists say that everybody who can be treated must be treated, so the government has ingrained that in their policy. Even if people reinfect themselves, they can be retreated, at great expense, no matter how many times it occurs – because that is what must be done if Hep C is to be eliminated.
The primary vector of Hep C is, of course, the injection of illicit drugs. Once, a sense of moral outrage may have played a hand here. Once, there may have been an instinct to punitively withhold treatment to those who turn up their noses at the government’s beneficence by reinfecting themselves. Once, there may even have been an inclination to enforce testing and treatment in the PWID demographic because, face it, they can’t be expected to behave like normal humans.
Of course, this kind of thinking still exists in our society, but – praise be! – certainly not in this policy document, which goes so far as to envisage eliminating the stigma along with the disease.
The strategy states these objectives:
– Victorians and affected communities are free from hepatitis-C-related stigma and discrimination
– Victorians are supported to reduce their risk of contracting hepatitis C
– Victorians with hepatitis C know their status
– Victorians with hepatitis C are cured of the disease
It comes down to testing, treatment and prevention. But these nuts and bolts jobs will require lubrication from the social part of the policy, the reduction – nay, the elimination – of stigma and discrimination, which the government correctly identifies as the primary barrier to annihilating hep C, as they make so many shy away from engagement.
But can stigma be eliminated? Even if they are not over-reaching in the attempt to eliminate hep C, they are certainly setting themselves a wild challenge by trying the same with stigma.
But one can only try. And if one don’t set oneself a goal, one certainly isn’t going to achieve it.
PWID have endured a hundred years (let’s say) of fervid demonisation by our religious and political overlords. Hate has been hammered down on drug fiends of every description, but most so on those who choose the intravenous drug use. As much as I’d like to believe it, I just can’t bring myself to believe that this sort of social conditioning can be erased in just fourteen years.
A successful outcome might be more likely if funding was provided for the development of an new direct drug delivery system with none of the connotations of the needle – though you’d have a hard time getting the PWID’s approval. Maybe something like the vapour punch gadget they use on Star Trek? That seems to get the job done rather well. Or the microneedle array, perhaps? Or the dermajet? (I’m basically joking here, but not completely.)
Or what about a nice dose of decriminalisation? Or legalisation? That would certainly have an effect on stigma … but I didn’t hear it mentioned in the Secretary’s speech.
It is possible, perhaps, that the level of stigma might be reduced where it matters – at the interface between PWID and health worker. But even then it is a long-shot. Drug-related health care settings are already one of the least likely places one would expect to encounter stigma – but if you run into it on the street outside the clinic it’s only human to bring those expectations in with you.
It was only on the subject of stigma that I found any fault with the Health Secretary’s announcement. I found myself wondering, by the way she spoke of it, if the health department had some kind of stigma reporting hotline, through which they could quantify its occurrence. Though later, in conversation, she detailed their processes for measuring levels of stigma in the community, I was left suspecting whether these processes would be sufficiently robust to keep the government accurately informed as to whether their initiative was actually working.
Needless to say, HRVic’s peer network is the obvious asset in this regard.
Secondly, it was interesting that drug users were not overtly mentioned in the policy speech. Stigma was mentioned. Discrimination was mentioned. But never were we told against who these evils were operating. Almost as if the words stigma and discrimination were functioning as a code to be used in order to avoid having to sully the lips by actually mentioning injecting drug users
I’m sure it was unintentional. But the very fact it was unintentional tells us how deeply the stigma is ingrained.
The Golden Phaeton