No One Left Behind – Cunning Minds Bend the Generic into the Profound.
A Reaction to the central theme of the 11th Australasian Viral Hepatitis Conference
On a quick glance, No One Left Behind is not the most riveting of catch cries. I didn’t really ponder on it much prior to the conference, save from vaguely hoping it might touch on my own ideas on who is really being left behind in the Hep C elimination effort.
However, the opening address by Associate Professor kylie valentine (of the Social Policy Research Centre at UNSW) sparked my attention in a big way. She took a message so generic as to be scarcely noticeable, stripped it back to its bones and then sharpened them into spears. In a sector where one can become accustomed to the careful, the measured and predictable, the breadth, intensity and the implications of her speech were striking.
Social policy research, she explained, deals with the government’s response to big picture issues: on what basis it decides to distribute resources, what it perceives as priorities, which problems it believes it can fix and those it believes deserve fixing. It also investigates how social elements interact – how an intervention in, say, education, may have run on effects in health and/or employment.
Before even mentioning viral hepatitis and the elimination effort, kylie laid out some fascinating but somewhat depressing groundwork.
She made it quite clear that that the most important issue unearthed by social policy research is inequality.
With the extreme disparities in wealth found in the USA, it is easy to think of Australia as a land where resources are distributed in a reasonably egalitarian manner. No so. Among the wealthy nations, we are positioned on the higher end when it comes to social inequity - and the situation is worsening.
The highest earning 20% of households in our country have five times the disposable income of the lowest 20%. The poorest 40% rely on either social security or minimal wages. And the average wage of the top 20% of earners is one hundred times that of the lowest 20%. (Figures and studies quoted by kylie can be sourced at the conference site.
For those in the lower percentiles, without ready cash to smooth out life’s problems, things tend to become complicated and mucky. Disadvantages spring out like snakes from the head of a gorgon, then twist into an insoluble tangle. We already know that, I guess, but the studies kylie brought to bear showed just how much of a risk factor a low income can be to mental and physical wellness, even in in a society where health and education are, technically, universally available.
To quote: Universally available services do not have universally equal benefits. Even if a health solution is universally available, in an unequal society it is unlikely to be accessed by all.
Hepatitis C treatment is one of these services, and kylie’s address was not the only one at the conference to compare it to other public resources such as childhood vaccination and public education. One researcher demonstrated some of the results achieved geomapping the National Bowel Cancer Screening Program. It was more than apparent that the more affluent a suburb, the more its population made successful use of the screening.
Unfortunately, in an unequal society, the most disadvantaged simply do not avail themselves of these opportunities as thoroughly as do the advantaged. Kylie used the phrase ‘middle-class parental arms race’ when referring to public education and early childhood development. Those with resources, those not weighed down by a day to day life of poverty are simply more qualified to take advantage of what is on offer.
What I found particularly surprising was the contention that universal access can actually widen the gaps between those who are disadvantaged and those who are not. (This may not come so deeply into play when it comes to the Hep C elimination effort – as it is clear that those with disadvantages are enjoying a concentration of effort – but it is curious to ponder.)
Another almost counter-intuitive point made by kylie on the subject of social inequality was that ‘it is better off being a poor person in some (more equal countries) than it is being a rich person in others (unequal countries). Inequality can have effects not only on the least advantaged, but on the most advantaged as well.’
Kylie painted a picture of a society (ours) the very structure of which places barriers to health. Indeed, she spoke for quite some time about the range of difficulties facing those in straightened circumstances, stressing how risk factors compound and intensify the further down the financial gradient a person finds themselves.
She described the stigma and discrimination that weighs heavy upon the disadvantaged, the assumptions that the poor are recalcitrant, lazy and refuse to make decisions in their best interest. She spoke of the punitive policies that result from this, the ever weightier ‘mutual obligations’ required of people on income support, the increasing inadequacy of that income support and the wicked phenomenon of ’robodebt’.
The word she chose to describe the effects of these policies was ‘pernicious.’
She reminded us that inequality and poverty are social choices and political choices. Those in danger of being ‘left behind’ would be far more likely to engage with society and with services, if that society did not choose to legislate against them (with such things as drug criminalization) and deny them their rights as citizens (by painting users of social security as innately fraudulent).
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I thought it was clever (even poignant) to remind everyone of the broad landscape at the outset of the event. That our society itself has made the decisions causing our efforts to truly ‘leave no one behind’ impossible.
But another talk I’d like to concentrate on, and one which dovetails well with kylie’s, was given by our leader here at HRVic, Sione Crawford.
Kylie’s concluding point – which she made with some sharpness – was a caution to the delegates that many who are part of the elimination effort have an outdated sense that problems may be solved ‘just by looking at the data, by putting in technical solutions...
‘That we can get beyond politics, or that values don’t matter, or that choices don’t matter. This is absolutely not the case.’
Sione’s presentation was titled ‘Who or What is Missing from the HCV Cascade of Care’ and produced some good examples of what kylie was getting at by this final statement, taking her broad sociological descriptions down to street level and demonstrating what they mean to people struggling in the real world.
But first: Cascade of Care. I was interested to find, when looking for a concise definition, that the term is actually quite recent, originating around 2011 in the HIV world, where ‘(HIV) Continuum of Care’ was a more common variant. People in the viral hepatitis sector prefer ‘cascade’. I do too, particularly in the case of Hep C, because there is a cure and patients can ultimately sail down the river beyond the ‘cascade.’ Continuum doesn’t quite fit.
So, what is it? The HCV Cascade of Care, paraphrasing from the HIV definition, ‘is a model that outlines the sequential steps or stages of HCV medical care that people living with HCV go through from initial diagnosis to achieving a cure (or SVR).’ It includes an antibody test, an RNA test (leading to diagnosis), a test for genotype, the prescription and acquisition of medication, the consumption of that medicine, and further blood tests along the way until a cure is (or is not) achieved.
In Australia, currently, it looks like this. You can see from where the notion of a cascade emerges.
This series of steps seems simple at first glance, particularly to, say, a researcher operating from a university and conferring with colleagues, but at street level it is far from it. Sione detailed the extraordinary number of difficulties a person can potentially face getting from one end of the cascade to the other, particularly if that person is in any way disadvantaged and/or is an injecting drug user.
In the Hep C world people often speak of the 'competing priorities' which get in the way of treatment. These, more or less, translate as 'life events': issues surrounding family, accommodation, finance, education, communication skills, other health issues and more. Sione suggested that the term 'priorities' may be problematic in itself, as it implies choice, and choice is something that someone suffering from the social inequity spoken of by kylie valentine may simply not have.
To begin with, even penetrating the cascade can be difficult. There is still an enormous amount of ignorance surrounding Hep C treatment, even among GPs, and much confusion as to how to actually begin the process. To someone sleeping rough, facing court or dealing with, say, painful dental problems, spending time seeking the door to treatment might seem an absurd waste of resources.
As for how many people are thus isolated from treatment, your guess is as good as mine.
But if contact is made and a treatment plan established, these obstacles do not evaporate. An appointment may be made, but if you've been dropped from your OST program for lack of payment and are in a state of withdrawal, you are unlikely to keep it. If you have no money and are arrested for stealing in order to service your habit, you cannot keep it. If you've messed up your 'mutual obligations' and not received your Newstart allowance, you may not be able to pay for petrol or public transport in order to keep it. The number of potential barriers is as large as life itself, and these are only some of the more extreme examples. There are issues as seemingly minor as remembering to take your pills, having a place to store your pills, or having enough money for bus fare that can bring your treatment plan crashing down - or scare you off engaging with it in the first place.
The more disadvantaged you are, inevitably, the more labyrinthine things become. Appointments are predictable, life is not.
(Here’s an example: I was taking my daughter to an appointment at the Monash Children’s Hospital this week. We arrived but there was no parking, aside from a multilevel monolith that demanded eight dollars an hour. Could I afford a minimum of sixteen dollars? No. We explored the surrounding streets. Every conceivable space was limited to half hour parking. So, we drove to Clayton shopping centre, where we ultimately found a spot. Then a quarter hour walk, my daughter hobbling in a CAM boot (colloquially a ‘MoonBoot’). We were lucky, in the end we didn’t miss out, but I hope you see my point.)
Frequently, issues born of social inequity can be compounded by the clinicians themselves, as well as what a patient imagines a clinician’s outlook to be. According to Sione, ‘some services actually treat these barriers as a test of readiness…. If a person is willing to come back to multiple appointments, it shows they’re more ready. I assure you, it happens.’ This kind of attitude cleanly exposes the rotten core of social inequity.
As I’ve mentioned numerous times in this blog, a person with veins damaged from injecting can experience considerable shame when a worker fails, often repeatedly, to draw blood – and this regardless of the attitude of the worker. The stigma within, as I like to call it. The assumption - ground into the senses over years of dark glances and discrimination - that anyone in a medical setting is bound, if you are or have been an injector, to consider you scum.
But it’s not only blood-taking. Injecting drug users have traditionally been treated badly by the medical establishment. As a result, users are often wary of going anywhere near such places. They may believe, perhaps rightly, that they will be deprioritised in queues or given substandard care. They may believe (often rightly) that if their problem is pain-related, their presence will be regarded as a sleazy effort to obtain drugs. There is also a subconscious association between doctors and police - the kind that results in people being reluctant, when an overdose occurs, to call an ambulance because they believe (falsely, at least today) that police will automatically follow in its stead.
With all these potential pitfalls in mind, Sione recharacterized the Cascade of Care as a ‘Cascade of Cracks.’
The grey bar on the left represents the unknown number of ‘those isolated from the health care system, who know nothing of how to access treatment… or who are going about their day to day business, feeling asymptomatic and not worrying about Hep C at all.’
(I can’t help mentioning here that having a habit or being on OST may disguise Hep C symptoms. And that HCV positive people who are getting on in years, as a great many are, may pass off their symptoms as part of the natural ageing process.)
But between each of the blue bars, we lose people for all those reasons listed above. ‘People with tenuous, trippy lifestyles,’ to quote Sione, ‘have an opportunity to be “lost to follow-up” at each of these steps.
‘It’s a matter of how we identify the most egregious cracks… how we (might) close some of them up.’ Sione made the careful observation that this was precisely the intention of most of the services represented at the conference. ‘Otherwise’, he said, ‘why would you be here.’
Indeed, there are a great many efforts being made to simply the treatment process. We are working towards the holy grail of a single appointment where, if you are found to be HCV positive, you are provided your medicine on the spot. With ever improving DAAs, it is likely that four weeks will soon be sufficient a course to destroy the virus, that the few existing side-effects will be eliminated, and that a cure – rather than being a 97% likelihood - is guaranteed.
Still on the subject of gap-closing, I was particularly interested in the concept of ‘navigators,’ something which I believe is borrowed (again) from the HIV world. With the Cascade of Care in its current state, a navigator would be a person who assists someone through to a cure (something like an NA/AA ‘sponsor,’ I imagine): someone who gets them to appointments, ensures they take their meds and generally works to seal over the ‘cracks.’ It’s something friends and peers often do already, but the notion of formalising it somehow may be worth considering.
As for those lost beyond the horizon of medical care, the path is not as clear, though it was broached at the conference. It’s something I’ll look at in the next (and last) of my posts on the event.
To conclude, there is certainly good reason for optimism – we have treated a quarter of those infected, which is no small thing. Also, we are working at pace to dissolve whatever barriers to treatments we can, but, as kylie valentine expressed so firmly, at its roots the elimination effort is being slowed by social inequity and that is a thing we cannot eliminate – we can only rage against it as best we can.
The Golden Phaeton