It’s been just over a year since the government made the new Hep C treatments available to every Australian. You might have been cured in that time. But if not, then why not? I know I have been and, I promise you, it’s well worth the bother.
Fairly robust figures from the Kirby Institute are now available for the period between March and September 2016. Nationwide, 25,890 people initiated treatment which equates to about 11% of the infected population. Projections for the whole of 2016 put that figure between 30,390 and 33,390. In Victoria 6,880 (around 13%) began treatment while, frustratingly, 2,563 new cases were reported.
Looking at the surveillance data provided by Victorian Department of Health & Human Services, it’s interesting, and somewhat sobering, to notice that these new notifications appear to still be increasing each year. I would have expected the opposite, given the great effort underway to spread Hep C awareness and reduce risky behaviours, but no. Perhaps the reporting system has improved and more cases are being picked up in the net… or perhaps not.
The nationwide figures reveal, not surprisingly, a clear tapering off in the number of new treatment initiations over time. 5,070 were reported in March and this number fell each month to a low of 2,500 in September. It’s a natural trend, of course. There was a population of ‘warehoused’ patients champing at the bit to get their medicine as quickly as possible and, with these low hanging fruit now well out of the way, maintaining the number of new treatments is currently a challenge on everybody’s minds.
60% of those receiving treatment were fifty or older. Again, this makes sense. Those in the plus fifty cohort are more likely to be experiencing debilitating symptoms – having had the virus gnawing at their livers for decades. They are also less able to tolerate these symptoms, more likely to have things seen to medically and to have been diagnosed, and are probably generally better informed. But, in a positive trend, this older demographic took a smaller part of the pie with each passing month – moving from 54% in March to 29% in September. It’s positive because the young, specifically those under thirty, are continuing to prove themselves somewhat of a hard nut in the elimination effort.
The vast majority of young people with Hep C are PWID. Younger PWID are less likely to have intersected with the medical establishment, making them, if not immune to documentation, then generally more ephemeral statistically speaking. It also makes them less likely to have knowledge of the disease, how it spreads, and how it may be treated. Because they are more promiscuously social they are more likely to spread the virus and, as such, are obviously an important treatment target – yet it is my suspicion that the figures were have on this group may be a little rubbery.
At a recent event staged by ARCSHS (Australian Research Centre in Sex, Health and Society) marking the first anniversary of the PBS listing of the new Hep C meds, a worker from YPHS (Young People’s Health Service) described some of the barriers they’ve encountered attempting to encourage younger people into treatment. From time to time the speaker sounded like a hunter describing methods for luring a particularly skittish prey species into a trap.
For a start, there is an issue of reliability. The young ‘frequently disengage’. Often they will feel ‘judged’ and not return. Some may commence treatment, but then not show up for their results, or else return for treatment way down the track. Counterintuitively, a surprising number are trypanophobic (ie. scared of needles and injections) making pathology tests an issue. Survival concerns will often trump treatment issues, particularly with a condition like Hep C which is usually invisible in its earlier stages. Many YPHS clients are habitual couch-surfers who tend to be more interested in accommodation opportunities than treating a condition that has no current impact on their lives.
A nightmare for the epidemiologist to be sure. What is commonly termed a ‘hard to reach’ population. Older, more sedate demographics are certainly far more amenable to the statistician.
But YPHS has observed how young clients differ from others and has changed their approach to suit. Apparently, younger clients like to talk, and to be heard. They tend to show a great deal of interest at first, but then can just disappear. If their experience has been good, often they will return down the track when their life situation permits.
YPHS have set themselves up to be prepared for when a client fronts for treatment, knowing it may be a precious opportunity. If a patient rings for blood results, they ask them to attend in person. Perhaps a little draconian on the face of it, but the tradeoff is that a lot of good can be achieved with the patient physically present. They provide Hep B vaccine on site. If no FibroScan machine is available, they use an APRI score to quickly ascertain liver condition. A flexible attitude to assessment and treatment gives them the best chance of modifying a client’s dangerous behaviours, and making targeted interventions that will most positively impact a client’s future health.
They allow the patient to decide their own fate, in their own time, putting them in control, at the centre of their own care. If they’re not yet ready to be treated, then at least they can be educated on how to maintain their health and how not to spread the disease.
The Hep C elimination effort, epidemiologically speaking, would hold that everyone be treated as rapidly as possible, but there may be a hiccup when it comes to younger clients. Not only do we not know much about them, but it may be that if the individual’s well being is considered paramount, then resources might be better expended in areas other than Hep C treatment. Given that, in the majority of cases, the virus is unlikely to cause great harm in the early years, there may indeed be room to first address the many other health threats faced by this demographic.
To this day, the number YPHS has treated for Hep C is zero. Make of that what you will.
Other figures emerging from the Kirby Institute report deal with how people access their treatment.
Prior to the advent of the new medications, people with Hep C were nearly always required to see a gastroenterologist at a hospital-based liver clinic. It was more or less a rule writ in stone as the regimens were severe and required close oversight.
But things have changed. The simplicity, safety and efficacy of DAAs mean that any prescribing health care provider with a decent understanding of Hep C is able to provide treatment. And, in order to make Hep C treatment more available to the largest possible number of people, there has been a strong push to engage general practitioners.
This process has been somewhat fraught. As hep C has traditionally been confronted by tertiary health care providers (ie liver clinics) often GPs simply do not see it as their turf. What’s more, the drugs themselves are monstrously expensive, giving them a prohibitive aura that the average risk-averse GP may be loathe to address. Also, GPs may be loathe to engage patients carrying the stigma of injecting drug use. These reasons, and probably others which do not come to mind, have led to a low percentage of GP initiated DAA scripts. In the early days, the vast majority of prescriptions were written by gastroenterologists and other specialists, with only 4% coming from general practitioners.
But, once more, the trend has been in the right direction. By September 19% of scripts were coming from GPs, meaning treatment has become more accessible to the population at large. There are other types of prescribers mentioned in the figures: infectious diseases physicians, supervised medical officers etc. but the important thing to notice is the positive shift from tertiary to primary health care providers.
There has also been a complementary effort to bring specialists into the primary care setting. I myself received my scripts from a visiting gastroenterologist at the same location I see my GP. With this in mind, there have probably been considerably more people getting treated in a primary environment than the figures suggest.
Something missing from the Kirby report is the percentage of scripts accessed from AOD doctors or from their premises. AOD doctors, obviously, have been at the forefront of distributing Hep C treatment in the primary environment, given that PWID are so much more likely to be HCV positive. But it might be useful to know exactly what percentage of AOD providers are Hep C prescribers, because of this special access to hep C populations – which includes difficult to reach groups like young users who are more likely to seek medical assistance in relation to their using practices than for their Hep C.
I am told that the AOD pharmacotherapy workforce is an ageing one, with too many retirements and not enough fresh faces. It is conceivable that, with time, this may have significant bearing on the number of GPs dispensing Hep C treatment. Conversely, if figures were to suggest that a low number of AOD doctors were providing treatment, then a targeted effort could be made to recruit them.
If we are to ultimately get a clear view of the younger demographic, it will be likely to be through their presentations at AOD providers.
Speaking anecdotally, but with a fair level of certitude, a large percentage of older people with hep C contracted the disease when they were under thirty. I know I did. And so did most my friends. I wonder – given that the under thirty demographic is currently so veiled – if as many new cases will emerge on the other side of thirty as did back then? I hope not. I would like to think that knowledge of good using practices and of Hep C treatment is a great deal higher among the current generation of young users than it was when I was part of that demographic – but the very possibility of a large pool of young hep C positive users operating out of view is a cause for concern.
The Golden Phaeton