The tone of the recent World Hepatitis day was distinctly celebratory, and deservedly so.
Greg Dore of The Kirby Institute at UNSW delivered the key takeaway, which was subsequently re-reported by most mainstream media outlets – and just about every site on the web with a stake in the issue.
Since March 1st when the new Hep C treatments were made available on the PBS, 22,470 people have been treated. This is a phenomenal number, comprising approximately 10% of Australia’s HCV positive population. (Dore describes it as the most rapid uptake of the new treatments seen anywhere in the world, and compared it to the meagre 2000-3000 patients who were being treated yearly on the old interferon-based regimen.)
The main factors in his success, says Dore, are Australia’s ‘unique approach in making the medicines available without restriction’ and the (again unique) deal they negotiated with the pharmaceutical companies.
The nature of this deal, which has never officially been made public, has become clearer over time. Over a period of five years, Australia has agreed to spend AUD 1 billion in the treatment of 62, 000 patients – at about AUD16, 000 a pop. (A spectacular discount from list prices which hover around AUD80, 000.)
The deal includes a ‘risk-sharing’ component. To paraphrase ‘if expenditure exceeds a certain level in any year, the cost of extra treatment is believed to fall in a stepwise fashion until drugs are being supplied at virtually no profit to the manufacturer – or free of charge’. (aidsmap.com.) If, as has been speculated, 30,000 patients wind up being treated in 2016, the price may drop to as low as AUD10,000 per treatment.
I have heard that the ‘free of charge’ mark will be hit once 62,000 treatments have been prescribed within the five year window.
Whatever the actual nuts and bolts of the contract, it means that among developed countries, Australia is almost certainly paying the lowest price for the new generation treatments. The deal also creates an enormous incentive to treat as many people as possible, as soon as possible, and, as I spoke of in my last post, the Victorian Government has taken the bit between the teeth in this regard.
According to Helen Tyrell, the CEO of Hepatitis Australia, the world-beating treatment figures are (in part) a ‘testament to the critical role of GP’s who can prescribe hepatitis C medicines for the first time’. It is true that GPs are permitted to prescribe the treatments. They are also being actively encouraged to do so, but, in Victoria at least, they are yet to be brought into the mix in any serious way. Success in convincing GPs to prescribe will indeed be critical in maintaining the treatment momentum, but in my neck of the woods it has been a slow, grinding process with some unfortunate glitches which I describe below
Here’s a link to HRVic’s attempt to collate a list of HCV treatment providers in the state.
Whatever the case, the fact that so many have already been treated by a system yet to fully find its feet is deeply encouraging. As problems are solved, more people will be brought into the treatment fold, and momentum will be conserved.
Thus, having achieved a world class result regarding uptake, the enthusiasm of our health authorities is overflowing. They are already speaking of eliminating Hep C ‘as a public health issue’ by 2026. Some media outlets even swapped out ‘eliminate’ for ‘eradicate’.
As I’ve written previously, it’s important to have grand goals, but I do find myself wondering if this one is actually achievable. What does it really mean to eliminate a disease? What factors stand in its way?
It turns out there are some very particular rules when it comes to wiping infectious diseases off the face of the Earth. They go, more or less, like this:
a) Control: Reduction of a disease to a locally acceptable level as a result of deliberate efforts. (diarrhoeal diseases)
b) Elimination: The reduction to zero of the incidence of a disease in a defined area as a result of deliberate efforts, and requiring continued efforts to prevent re-establishment. (measles, polio)
c) Eradication: The permanent reduction to zero of the worldwide incidence of infection as a result of deliberate efforts with no further measures needed. (smallpox)
d) Extinction: The disease no longer exists in nature or in the laboratory. (no examples)
Ex-president Jimmy Carter has spent huge energies in his efforts to eradicate guinea worm, and hopes to see it gone before he dies. He’s close, but some of the measures they have used might give one pause. As guinea worm is transmitted (horribly) via water, in some instances armed guards have been stationed by village watering places in order to prevent desperately itchy victims from accessing them. (Guinea worm drives those it has infected to seek water to relieve their unbearable itching. Once in touch with water the spawnlings burst from the skin.)
One would hope our governments are unlikely to ever call upon such extreme responses, but I do think they are underestimating the lengths to which they must go if they are to cast Hep C utterly from our shores
According to the Kirby Institute the 51-60 age range accounted for a little shy of 50% of treatments in the month of March 2016. If you expand the age range to 51 and upwards, it becomes about 75% of treatments. But those 30 or under represent only 2% of those treated
So, does this reflect the age breakdown of those with Hep C in Australia? Frankly, no. At least according to the Kirby Institute’s 2015 surveillance report. Between 2005 and 2015 the 20-24, 25-29 and 30-39 age groups each significantly outnumbered the 40-plus age group in terms of new notifications. In 2005 the sub-40 group outnumbered the post-40 group 7,405 to 4,705. In 2014 it was 5340–5271. There is clearly a creep towards notifications among older groups, but they are still outstripped by those younger. Also note that we are talking about over 40s, not the over 51s who, again, represent 75% percent of those treated thus far.
Of course, there are other factors to consider. For example, those who were diagnosed in 2005 are now ten years older, but though I’m no statistician I think I’ve made my point: the first rush of those seeking treatment has been disproportionately represented by those over 51.
People in this age range have often had the disease for a long time and are more likely to be feeling the effects, making them more likely to seek treatment. A number would already be under treatment for late stage liver disease. Others with fibrosis or cirrhosis would be seeking treatment as a near life or death priority – myself among them.
I think it’s safe to assume that this older demographic comprises the low hanging fruit in terms of bringing people to treatment. Also, a significant number of those already well-educated about health and HCV will have been heavily represented in this first wave.
But what about the second wave? If it comes. As a wave, that is. Not as a trickle.
The first flush is already tailing off. Hospitals are reporting a drop off in new presentations, and waiting times for appointments are shortening. At one hospital in particular numbers are down to less than a third of their average at the height of the first wave.
The fact that more patients are accessing treatment through GPs and community clinics is part of the reason for this, but not enough to explain away the downward trend.
In light of this, is the government’s vision achievable? And what must be done to bring the next 210,000 into treatment?
Somehow, those who are yet to feel the physical effects of Hep C must be lured into treatment. Those with insufficient knowledge of the disease and its dangers must be educated. Young people with busy lives and a sense of immortality must be brought on board. Those whose poor experiences with the medical system have generated distrust must be reassured. And minority groups with little engagement with any institution bar the police and courts must be engaged.
Not to forget current PWID with active dependencies for whom treatment may be a low priority or who may otherwise lack the structure in their lives to successfully jump through all the hoops necessary to access the cure. PWID, it should be noted, comprise 95% of all new infections.
Hep C is rife in jails too, but this is one area in which a program has already been established. And stigma, which will inevitably throw tacks on the road every step of the way, is thankfully, at last, being officially addressed.
Some glitches also remain in the system. Though an increasing number of GPs are prepared to offer treatment (particularly those who already prescribe pharmacotherapy) there are a few problems emerging with the gastroenterologists who must sign off on their treatment plans. For a start they’re not being paid for the service and I have heard tales of their sitting in hospital cafeterias scanning files in their lunch hours. More importantly, these specialists are often having to demur, usually because of mistakes as simple as the absence of fibroscan results or the wrong choice of medication. Hopefully, the GP model will succeed, but it appears to require more focus on education.
I have also read that an Australian Journal of Pharmacy survey suggested ‘that up to 30% of pharmacies’ might not fill expensive Hep C scripts ‘for economic reasons’. This certainly doesn’t help and really should be cleared up soon.
Eliminating Hep C by 2030 is a possibility, but I fear the hurdles have been underestimated. The effort required will be huge and – as they speak of nation-wide elimination – there must be synchronisation with federal and other state governments.
Certainly, if any country can do it, it’s Australia. Our hepatitis C response is the envy of the world. The drugs to do the job are here and we are prepared to dispense them – compared with a nation like the UK which has chosen only to treat the very sick. (Indeed the monitoring of visitors and immigrants may be a likely step in any program for elimination.)
The problem, it seems to me, is the human element. The unpredictable, fickle, illogical human element which will frustrate our epidemiologists down to the wire.
The Golden Phaeton