The first thing I should mention is the single most important thing about this gathering and others like it.
Many conferences are strict convocations, where doctors mingle and speak doctor-speak, where researchers mingle and speak researcher-speak; this event was a very different affair. It was inclusive of everyone with an iron in the fire of viral hepatitis. ‘The stakeholders,’ as people say.
You have superstar doctors rubbing shoulders with drug user advocates mixing with hardscrabble rural nurses drinking with bureaucrats discussing financials with drug company reps mingling with statisticians and geomappers and policy mavens.
It’s out of melting pots like these that new ideas have a chance to be born. People (including, very specifically, me) also edge closer to understanding the sector as a whole and making wiser, more informed decisions in their own particular bailiwicks.
I came away from the event with an acute case of cerebral exhaustion (exacerbated by alcohol, of course; it being a liver conference, after all). I’m almost certain the dry, informative input was not to blame, though there was a vast amount of that. It was more the processing, the constant effort to synthesise everything presented - on stage or in discussion - with what I already knew and with the ideas continuously developing in my head. That’s what exhausted me, I think.
For a few days afterwards, I felt like a blank. People would ask me about the event and all my brain could produce was white noise. After I arrived back in Melbourne, I somehow felt like I was still there. In Adelaide. Nothing against Adelaide, but I would prefer not to have my consciousness trapped there for any length of time.
Not that I saw much of the city beyond the conference centre and the inside of an Air B&B. I did have the pleasure of walking down Hindley Street on my way to and fro. That was interesting. I haven’t really spent much time thereabouts since the Eighties, but I don’t think it’s changed much. That small-town sleaziness is still in clear evidence – just more of it. I found it quite a cheerful thing, nostalgic even… Spruikers doing their thing outside strip joints, sex-workers under questioning by police…
Anyway, back to the conference.
I must apologise for not posting anything during the actual event as promised. It came down to the obvious – me forgetting my Macbook cord and having my battery pack stolen from a power-point during one of the talks. (I wonder which hepatologist did that...? Conceivably, it may have been mistaken for a bomb, but… I think that would be drawing a very long bow.)
I have heaps of material to discuss, but for this post, I might limit things to my personal experience. And perhaps to some bits and pieces which may not find a place elsewhere.
For instance, I learned of the confusion caused at a Queensland clinic by a HCV-positive gentleman with Situs inversus. That would be, in Wikipedia speak, ‘a congenital condition in which the major visceral organs are reversed or mirrored from their normal positions’. In this case the liver was on the left and the spleen on the right, leaving the clinicians rubbing their brow over a series of inexplicable FibroScan results. Thankfully, somehow, the situation was resolved, and congratulations to whoever made the mental leap. I had thought organ reversals were a myth, or something reserved for fictional characters like Dr Who.
*
The exhibition space for the conference was, naturally, dominated by the big three drug companies, but it was also well populated by other concerned parties, one of which – as I’m talking about my personal experience – I’d like to single out.
I’m not certain of the particular company being represented, but I can say for sure that the theme was hi-tech medical machinery. The display was presided over by a gentleman unique enough for me to remember him from two years ago and the last conference. Concentrate on the phrase ‘Electrolux salesman from the Fifties’ and your mind will fill in the details.
The moment I stepped within his techno-pentangle, I was going to be tested for something – it was just a question of what.
There was some interesting new equipment there: the FibroScan was the star, of course, but there were improvements I had not previously seen. With the right version of the machine a subject’s results can be subjected to something referred to as a CAP (Controlled Attenuation Parameter).
This checks the level of fat in your liver and gives an indication around the possibility of Fatty Liver Disease. It makes sense; the FibroScan machine uses sound pulses to determine elasticity. Cirrhotic tissue is stiffer than healthy tissue and fat, one would assume, has its own level of elasticity. (Not much, I’d venture). I can imagine it being entirely possible, with a little recalibration, to include fat in the results – and in one fell swoop making the FibroScan machine relevant in the emerging arena of fatty liver disease.
They are also doing FibroScans on spleens now. A poor result here would be a sign of portal vein hypertension and a strong predictor of varices. (If you want more information on these horrible things, look for my article in the forthcoming Whack Magazine. It’s called You Don’t Scare Me.)
So much for the orthodox machinery.
My eye was drawn to a poster of a woman’s head encased in a peculiar (perhaps even disturbing) unit, the most noticeable aspect of which were the large fan outlets positioned over each of her frontal lobes, and the expression of ecstasy on her face.
I’m kicking myself for not taking a photo. (I blame that squarely on the wine & cheese session of the evening before, and maybe a couple of semi-judicious pit stops on Hindley Street during my walk home). I’ve scoured the web for a copy of the poster, but no dice. I can’t even remember what it was called. Brain Zapper? Something like that.
The unit was associated, I think, with transcranial electrical stimulation. If you’re interested, look it up, it’s not really relevant here. (Beyond saying that I’ve tried something of the sort and it can have a relaxing effect.) The salesperson, unfortunately, seemed to be pitching the Brain Zapper in a dubious direction, intimating that the brains of dependent individuals may be helpfully rewired by regular use of this instrument. My memory is a bit hazy here, so please don’t quote me. What I do recall clearly is that the unit generates a lot of heat, necessitating the twin fan set up. Oh, and the prototype weighed seventy tons… Or perhaps seven?
Sadly, there was no opportunity to test this device. The salesman told me he’d only put the picture up to pique people’s interest. It worked. While I questioned him about it, he guided me smoothly, without my realising, towards another equally inscrutable apparatus.
I remember few details on this one – possibly because I was in shock over the results it gave me.
He induced me, somehow, to remove my jacket and shoes and stand upon a slightly raised platform on which there were four metal grey Twister-like circles. I gave my height, age and within seconds the unit spat out a receipt which, at lightning pace, he proceeded to interpret. Body fat. Muscle mass. Visceral fat. Metabolic rate of a 44-year-old. That was good. Fast for a 58-year-old. It would make it easier to start burning off fat, because at the bottom of the receipt, in ultra-bold, framed by a thick dot-matrix rectangle, the word…
Obese.
Was this a carnival or a conference? I didn’t have time to decide; he already had me halfway to the gurney on which they perform the FibroScans. Thankfully, I was saved by a natural dread of learning I was cirrhotic in an extremely public space containing at least some workers who had treated me at some stage or other. Plus, I was in shock. I’ve always been a stick-figure. Perhaps not so much in my latter years, but, still… Obese? Successfully, though not without some effort, I slipped from the gentleman’s clutches.
I’m not sure I’m comfortable with the ethics of performing medical tests in such an environment. Not every delegate is going to get a happy result, and in that space post-diagnosis counselling would surely be have limitations?
Fortunately, I managed to counsel myself regarding my new-found condition. The most common phrase I uttered for the remainder of the conference was, ‘Do I seem obese to you?’ And almost everyone said, ‘No.’
The silver lining is that I’m already developing a health plan and have vowed to drink less. It will help, whether I’m obese or not. Cirrhotic or not. Whether that machine was a carnival attraction or a bona fide piece of medical diagnostic machinery, it doesn’t matter.
Alcohol is a bit of a weak spot for me. My control is reasonable, but the levy can break on special occasions, particularly when I’m overstimulated. In time I will take that FibroScan, but only when I’m good and ready.
While on the subject of alcohol, I must point to the naked irony of choosing the National Wine Centre as the venue for the mid-conference social event. (Not that I’m complaining.)
Around the corner from the exhibit described above, there was a representative from Cepheid, demonstrating something with as much, if not more, relevance to the Hep C elimination effort as the FibroScan machine.
Cepheid produces kits for testing the presence of HCV RNA in the blood. Unlike the antibody test, this is what tells you whether or not you actually have the disease.
I actually mentioned Cepheid in the blog a few months ago. An earlier iteration of their device was used in the Burnett Institute’s Rapid-EC trial, which looked to establish an accelerated, pared-down cascade of care, bringing clients to SVR as quickly as possible with an absolute minimum of fuss. At that time, it was required that blood be taken in the normal way before it was analysed by the Cepheid machinery. This could take between two and three hours, a period few people would be happy to spend lingering in a medical clinic. Most would leave, promising to come back later, or on another date - but, of course, not all returned.
Cepheid have now come forward with markedly improved equipment. Only a drop of blood is necessary, eliminating the need for a full blood-taking session. The sample is placed in a cartridge they call the ‘Xpert HCV VL Fingerstick’ which in turn is placed in a ‘GeneXpert’ system: a kind of base station which runs the analysis.
Here’s the kicker: it only takes half an hour.
(Cepheid’s literature states that ‘RNA quantitative results (will be) available in less than one hour.’ Quantitative results (the actual quantity of virus in the blood) are becoming increasingly irrelevant in the era of DAAs. Qualitative results are the important ones. Those that tell you if the virus is actually present or not. During a presentation on the device, the speaker proposed that these qualitative results - the yay or nay – could indeed be available within thirty minutes.)
This could make a vast difference in the treatment of Hep C, making the dream of a one stop shop a reality. A patient could front at a medical provider, be tested, have their prescription written and obtain their medications within an hour - leaving that much less room for people to fall through the cracks. Better yet a peer worker could roam the world testing their friends and acquaintances and returning later with results in hand.
Unfortunately, we’re not there yet. Diagnostic kits like those made by Cepheid are still to be approved for use in Australia - not to mention the serious number of other barriers that remain in the way of such a super-simplified process. As you might imagine, this was a matter that consumed a great deal of energy and time at the conference.
The development and implementation of powerful diagnostic technology will, without doubt, be an important factor in Hep C elimination. One of the international speakers, Michael Ninburg, President of the World Hepatitis Alliance (USA) and an extremely genial gentleman, pointed out that such kits were even beginning to appear on the WHO Essential Medicines List.
I’ll leave this post here. Next week I’ll be looking into the hard core of the conference. The central theme: ‘No One Left Behind’ and the surprising manner in which it was interpreted by some very cunning minds
The Golden Phaeton
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