The Hepalogue

It’s Been A Long Time Coming

by The Golden Phaeton on 22/03/2016

The wait, it seems, is over.

We’ve been strung along before. Our hopes sustained by continual promises of miraculous new elixirs. Just around the corner, they would say. Just wait, they’d say. It will come.

Is it any wonder that people have developed a degree of cynicism? I myself have endured four interferon-based treatment regimens, spanning decades. Yes, each came closer to purging the HCV virus from my flesh, but each was also a poisonous experience. Indeed, when I think back to those times my stomach squirms in its nest.

But, now the long wait is over.

In December last year, our federal Health Minister, Susan Ley made an announcement in the middle of the night on a weekend. All Australian HCV sufferers, regardless of the progression of their disease, irrespective of whether they had been treated previously or not, would be able to access the most potent of the new Direct Acting Anti-Viral agents (DAAs) despite their eye-watering cost. (At the initial asking price, after all, this long-awaited (and outrageously belated) policy decision would have had the potential to bankrupt the PBS.)

The timing of the announcement was presumably an effort to ambush the news cycle, so that the Federal government and no one but the Federal Government could lap up praise for the initiative. It had been expected to happen at some stage by all those with an interest, but still it took everyone off guard. As for myself, I had given up entirely and was about to import the drugs from India.

The medications in question promise a cure-rate beyond 95 percent with few unpleasant side-effects. The starring substance is the nucleotide inhibitor Sofosbuvir (Sovaldi) which is lethal to HCV when taken in conjunction with NS5A protein inhibitor Ledipasvir (typically in the formulation marketed as Harvoni) Daclatasvir (another NS5A inhibitor, sold as Daklinza by Bristol-Myers Squibb) Simeprevir (a slightly older NS3/4A protease inhibitor, sold by Janssen as Olysio) or one of a number of other new ‘small molecule’ preparations. One’s particular choice of medicines is determined by genotype and by progression of the disease.

Though the appeal of the new drugs, of course, comes down to their spectacular trial results and the shorter duration of treatment, the absence of Peginterferon injections should not be under-estimated as a positive factor.

Over the years, Interferon has created a ghastly image for itself, with a tranche of grotty side effects. The drug has a tendency to confine cranky and depressed patients to their beds for month upon miserable month, during which time they often become a plague upon their households – and over timescales as long as a year, sometimes, the large scale structure of such an individual’s life can begin to unravel.

I, for one, vowed not to resume treatment until this particular nasty was off the table. I’m sure others were of the same mind. And more besides were undoubtedly scared off by treatment-related horror stories.

Thankfully, it appears that Peginterferon is now indicated only in some rarer cases. Its partner in crime, however, the anti-viral Ribavirin, remains an important part of the anti-HCV strategy, particularly for those with cirrhosis. I myself began treatment a few days ago and elected (with the agreement of my physician) to include Ribavirin in my regimen (together with Sofosbuvir and Simeprevir) despite my not having cirrhosis and despite its propensity to chew up red blood cells and precipitate anaemia. Really, the Ribavirin just stacks the odds a little more in my favour, and after so many failed treatments, I’m prepared to put up with a few side-effects to make sure this treatment is my last.

There was a degree of rushing around, I must admit. The March first date caught a lot of businesses and institutions napping. Amidst it, I almost forgot to stop and remind myself that I might really have arrived at a locus in space and time it had taken me three decades (or so) to reach. Walking back to my car, across Fawkner Park from The Alfred, clutching a paper bag worth about seven grand, I did actually pause for thought. I seated myself on the grass with my back to a poplar tree. Looking past a noisy trainer exercising a small group of fitness freaks, over the swathes of green to a line of blocky buildings in the distance, I ticked a mental box marking this as a crucial life moment and dropped my first pills.

It’s been nearly two days now since then. I have a weird feeling of groundlessness, as if I’m in transit – as indeed I am – from one state to another. I’m considering a life minus the accursed virus that has coloured my existence in one way or another since my late twenties. I’m seeing a rosy future – despite a nebula of fear that follows me about, reminding me in a grave whisper that there is still a small chance I will never be healed.

Predictably, since the beginning of March, there has been a big demand, particularly for Sovaldi and Harvoni. I had heard that many local pharmacies were baulking at handling such pricy goods. Thankfully, my own pharmacy, and the saintly pharmacists within, were willing to oblige. Naturally enough, however, in the warehouse there was nothing to be had. I opted to score from the in-house pharmacy at the Alfred. I called. No Harvoni, but no matter – I needed Sovaldi. They invited me to come in, with a warning that, due to shortages, no provider was currently letting go of more than a four weeks supply. Again, no matter. I could at least begin my twelve weeks of treatment – and, when I retrieved my script, the relief was plain in the faces of my local pharmacists.

After some waiting at The Alfred, a smiling, be-veiled pharmacist emerged and apologetically explained that my script was issued on the wrong pad (or something). I think they were dotting the ‘i’s and crossing the ‘t’s with especial care owing to the cost of the drug, as I’d never had an issue there before. Helpfully, they referred me to the commercial pharmacy attached to the hospital, who were holding and willing to supply. $6.50 with a Health Care Card. ($38.30 without.) Remarkable. A great deal less than 0.1% of the $19,444.62 our government pays Gilead Sciences.

So, yes, there’s some confusion about. And supply issues. And worry among providers, who fear that a pen slip might mean a financial ruin. But let none of this hold you back. Now, at long last, the time has come for all with the virus. No excuses remain. Fear not and come forth. Add your part to this wonderful, life-giving chaos.

(Stay tuned. Hepalogue Posts will be at least weekly from now on. Truly.)

The Golden Phaeton

12 March 2016

Previous post:

Next post: