The Hepalogue

Anecdotes & Rumours of Anecdotes

by The Golden Phaeton on 21/05/2016

I tend to hear a lot of rumours about HepC and its treatment. If something especially interesting pops up, I try to do a little fact checking before posting it. This can be a frustrating process – and the effort expended often outweighs the intrinsic worth of the information.

However, just for this post, I’m not going to bother so much with fact-checking.

Now, whilst mooching about in the Harm Reduction Victoria offices, an associate of mine heard that since the new medications became available on the PBS – about three months ago – four thousand patients have commenced treatment. This is equal, roughly, to the four thousand treated in the previous three years.

anecdotes-2

An interesting fact, and one I am inclined to believe, more or less. I wonder if Hepatitis Australia heard something similar before they wrote: Hepatitis Australia understands that the number of people receiving treatment in March 2016 has matched, or exceeded the number of people receiving treatment during the whole of 2014.

It’s as clear as day that the new drugs have convinced a great many people that it’s time, at last, to expunge their poisonous little parasites. (It’s enjoyable just typing stats like these – as if the simple act of recording them proves, unassailably, that the tide has turned.)

But it’s such a vague piece of info. I’m not sure if it refers to Victoria or Australia as a whole. If it was Australia, 4,000 would account for 1.7% of the nation’s diagnosed Hep C sufferers. If Victoria it would be approximately 6.8%.

A beachhead to be sure, but still only a beachhead. If we want to actually eliminate the disease, these numbers ought be maintained and, hopefully, should increase.

So, when I arrived for my most recent doctor’s appointment, I was a little surprised. In a previous post I described how crowded it was on my previous visit, how I encountered a remarkable number of friends from my early adulthood who had, by some supreme effort of will, forced themselves out – into the daylight – and beyond to the clinic.

And how, to my astonishment, an air of excitement was perfusing the place. A little creaky and jaundiced and beaten-up. A little tarnished – but definitely an air of excitement.

But this last time it was different. I asked the receptionist where everyone was. He explained that most of the clinic’s HepC patients were now on the treatment and only needed to attend every month or so. The crowd I had seen was just the initial surge.

Fair enough, I thought – especially given that my clinic has ceased taking new patients. But I couldn’t help wondering …

Among our nations’s 230,500 HepC patients, there has always been a percentage ready to step forward the moment a surefire treatment became available. But what of the others? Will the next generation of patients require a little urging, a little cajoling before they bother with treatment? What if, as our medical establishment seeks to eliminate the final vectors of the disease, they encounter increasing levels of ignorance, nonchalance and even outright resistance? What if they are left vainly striving to winkle out the final few from their cricket-holes?

What if more Australians are oblivious to their condition than we thought? And how many are in denial? I have a friend, the nature of whose lifestyle made it utterly impossible, by the very laws of the universe, for him to have escaped contracting the disease. Only recently, after twenty years, has he admitted to testing positive.

Forgive my pessimism. I’m sure a steady flow of the infected will continue through the turnstiles, and that ongoing efforts to provide treatment opportunities in the community will bear fruit. That said, I wonder if it will be more of a challenge than it seems.

What if we’ve lost a little perspective in the first flush of excitement? There is so much positive talk at the moment about eradicating the disease, might we be forgetting that it will be the job of decades, not of years.

After all, by the available figures, treatment numbers are yet to reach parity with the 10,000-odd new cases diagnosed each year. (The vast majority of freshly diagnosed patients have had the virus for a considerable time, but the small number of newly-acquired infections does seem to be slowly rising.)

It is estimated that 20% of HepC infections in Australia still remain undiagnosed. I’m no statistician, but this seems to amount to 46,000. Does this mean that after 4.6 years at 10,000 notifications a year, there will be a sudden drop off in new diagnoses? Again, I’m no statistician, but if the pool of undiagnosed is as low as they say, shouldn’t we already be seeing a drop off, rather than a pretty steady 10,000 (approx) a year? Just food for thought … Correct me in the comments if you have an opinion.

I worry particularly about younger people with the virus, for who side-effects are either minimal or entirely non-existent. Treatment may not seem like a priority for them, and may seem even less urgent now a near-certain cure is easily available. Although not suffering themselves, they will continue to provide a reservoir for the disease if they remain in the shadows.

Though it is finally treatable, Hep C should not be underestimated. It is the cause of one-fifth of liver-transplants. It is the main reason for liver cancer deaths, and liver cancer has the fastest rising incidence of any cancer in Australia. Recently, the Centres for Disease Control (CDC) announced that Hep C had become the deadliest infectious disease in America.

Nevertheless, on the whole, things are heading in a good direction. Most of the people I know with HepC are either on therapy or planning to be – but there are a hell of a lot of others out there who need waking up.

Having the tools for the task is one thing, using them to their maximum efficiency is another.

The Golden Phaeton

 

Previous post:

Next post: