Tuesday, April 01, 2014

Undermining healthcare universality, with the best of intentions

It's been a while since I posted anything, and this post is difficult and long – please forgive me. I'm watching popular causes white-anting the universal health system in Australia, and it bothers me.

The carve-outs

The universality of Australia's health system has been under attack consistently since the Whitlam government first attempted to create a universal system in the 1970s.

Some of those attacks are obvious: every Liberal government since Whitlam lost office has sought to erode it in some way, usually by making it less “universal”. The latest co-payment idea is just one example; a long time ago now, John Howard thought it was reasonable to try to get everybody including pensioners to fork out at least $500 of their own money each year on treatments.

I'd like to talk about a different attack on the practice of universal healthcare in Australia, and I do so knowing that some of what I'm going to say will be more offensive than an expletive-riddled rant.

There are many well-meaning people in Australia whose mission – often called by that very word – is to carve out niches from the universal healthcare system. The problem as I see it is that carve-outs marginalise someone.

Here's a relatively uncontroversial example: the Victorian hospitals that are operated under contract by a Catholic church charity, and as a result, do not offer abortions. I need not enter the abortion pro-or-anti debate to make two observations:
  1. Those seeking abortions are marginalised to the extent that they need to go somewhere else; and
  2. This is a need that would not arise if the charities involved had not carved out part of the universal health system.
Chemotherapy and cancer charities

Now, let me put forward the case that's closer to home. After a lot of fund-raising and lobbying, and with considerable government support, the Lifehouse charity – established to honour Chris O'Brien – opened its Lifehouse at RPA cancer facility.

Here's the Lifehouse mission: “improve the quality of life of cancer patients, carers and their families by advancing the understanding, diagnosis, treatment, cure and prevention of the disease”, including “an ambitious plan to transform cancer care, by creating an integrated and patient-focussed centre of excellence.”

And it's a lovely place that replaces the old and (formerly) cramped Sydney Cancer Centre at Gloucester House. And it doesn't treat non-malignant patients such as my wife – for now, they're back at Gloucester House, the immunology patients and the haematology patients. The facility looks not long for this world, for reasons I'll discuss in a minute.

It's an odd situation: the building was mostly paid for by government; the land is provided at a zero-cost lease by the government; public patients are paid on a fee-for-service basis by government. Yet patients that are best served by a specialist chemo suite are excluded because they didn't fit the mission.

Malice is unnecessary to explain this, I reluctantly concede. It's much easier to understand thus:
  1. Visionary (and others) conceives vision and reaches a milestone at which negotiations can begin;
  2. Finding that negotiating with governments requires experts, experts are brought in. Including lawyers, who are apt to take broad mission statements, and pettifog them into the narrowest possible semantic pit;
  3. People outside the mission were simply left behind.
Even in an absence of malice, however, the effect is real – and isn't merely reflected in the inconvenience of a few dozen patients missing out on the glass tower and “patient focussed” care.

The reason those patients, including my wife, were treated at the Gloucester House was that it pulled together a critical mass of expertise and equipment. They were beneficiaries, if you will, of a universal system that provided:
  1. Specialists overseeing the chemotherapy (you don't blithely say “five hundred mills of cyclophosphamide for the patient in Bed 12).
  2. Nurses who work in pairs (cross-signing each others' work to make sure that the right stuff is being given to the right patient, in the right order).
  3. Those nurses have to regularly re-certify to handle cytotoxins.
  4. A pharmacy dispensing the drugs.
  5. And that's just the stuff I know about.
From a financial point of view, this simply isn't viable: there are too few patients for a hospital's budget to support a daily compliment of five nurses (I checked with the head nurse at Ms T's last visit), a doctor in charge, a pharmacist …

Which is why I expect Gloucester House to be closed, and therein lies a problem for the patients that remain. Ignoring whether (say) the immunology clinic at RPA is kitted up to deal with cytotoxic chemo, it's only got a handful of beds and gets pretty crowded on a busy day.

It doesn't take any great stretch of the imagination to ask what other carve-outs have the same impacts: how many treatments in the public system are put in difficulty because the bulk of a service's patient cohort has been appropriated by a private charity?

Each time that happens – and there are plenty of charities to choose from – the universal system is white-anted in a way that has nothing to do with “means testing”, “wealthy individuals rorting the system” or “co-payments”. Even a wealthy patient requiring immunological chemotherapy can only get it if a suitable facility is available.

The value of universality

I believe in universality, because to me, it's not merely the financial argument that reductionists believe it to be. Australia has been dragged to the right by thirty years of the Liberal party calling Medicare a “safety net” – something that has crept so insidiously into the language that journalists use the expression without thinking about it.

It's my contention here that “universality” has a second meaning: that if a patient requires a particular therapy, the availability and quality of care should not depend on which specific condition requires treatment.

The challenge with this discussion is that cancer charities are hugely admired and expertly marketed, on the premise that their patients are the ones left behind.

Cancer remains a terrifying and all-too-often fatal disease, and because as a whole it's quite common, everybody has an experience, an anecdote, or a reasonable fear.

Let's set this down with data. Cancer Australia puts the incidence of all cancer types at 583.5 cases per 100,000 men and 404.2 cases per 100,000 women.

According to Orphanet, the global prevalence of all vasculitis types is between 1 and 9 per 100,000. Ms T's specific presentation isn't described at Orphanet because it doesn't seem to have a name, she's on the rare end of an already rare disease.

If you want to raise charity dollars, you'll get a lot further with cancer than with vasculitis.

By virtue of being well-heeled, the largest cancer charities are very good at fighting off boarders. Ever since Good Weekend published its “Cancer Wars” there's been a flurry of rebuttals about whether any particular cancer's research should be considered “over-funded”.

I'm not qualified to enter that debate, but when a largely government-funded facility can find room for Reiki, Qi Gong and reflexology, but not for a handful of chemo patients, discussions about money just don't pass my personal sniff-test.

Universality doesn't mean quack medicine for all. It's an aspiration that nobody gets left behind - even if nobody heard of your disease until Harold Ramis died of a presentation of it, and it was quickly forgotten.

Wednesday, March 05, 2014

Cherry picking – not science, but quotes

Screaming loony climate conspiracists (I will not dignify them as “sceptic”) are famous for cherry-picking data, but we forget that they also cherry pick people. Let one phrase out of a hundred sound like a prediction you can prove wrong, and they'll roll it out to prove you were wrong.

The SLCCs – pronounce it “slacks” if you like – have been on and on and on about the idea that Tim Flannery predicted unending drought forever in this interview with the ABC's Maxine McKew, which is the cherry-pick of cherry-picks.

Hence if Sydney gets a thunderstorm in March, you can guarantee that the editorial cannon fodder that are proud to fight on behalf of rich people that despise them will take it as proof that Flannery was wrong.

To save you from tl;dr, I'm going to parse the interview.

  1. Are weather patterns changing?
Flannery's answer: changes to wind patterns and the tropics moving south have changed rainfall in south-eastern Australia. He didn't say “every year will be a drought year” in answering the first question. Nothing he said answering McKew's first question is contradicted by events since.
  1. Is it more severe in eastern Australia?
Flannery: yes. “Something will need to change” to fill the Warragamba. Something did change, a flip in the Southern Oscillation. Nothing he said to McKew's second question is contradicted by events since.
  1. You can't be certain?
Flannery agrees. He says he thinks the science is pointing in the other direction. Nothing he said to McKew's third question is contradicted by events since.

The next question and answer are given verbatim with emphasis.

MAXINE McKEW: So does that mean, really, we're faced with - if that's right - back-to-back droughts and continuing thirsty cities?

TIM FLANNERY: Well, you can't predict the future; that's one of the things that you learn fairly early on, but if I could just say, the general patterns that we're seeing in the global circulation models - and these are very sophisticated computer tools, really, for looking at climate shift - are saying the same sort of thing that we're actually seeing on the ground. So when the models start confirming what you're observing on the ground, then there's some fairly strong basis for believing that we're understanding what's causing these weather shifts and these rainfall declines, and they do seem to be of a permanent nature. I don't think it's just a cycle. I'd love to be wrong, but I think the science is pointing in the other direction.

So – every aspect of that answer was qualified: Flannery didn't make an absolute prediction. He was doing his job, trying to explain the science – including the uncertainty. Nothing he said to McKew's fourth question is contradicted by events since.
  1. It will continue, and cities will be thirsty?
Flannery said “that looks to be the case”. Nothing he said to McKew's fifth question is contradicted by events since.
  1. What's the worst-case?
Note: this is asking not “what will happen?” but “what's the worst that might happen?”

Flannery: There are quite severe problems if current trends continue. Nothing he said to McKew's sixth question is contradicted by events since.
  1. Is drought preparation worthwile?
Flannery: Yes, “even if you think there's only a 10 per cent chance that this rainfall deficit's going to continue for another few years”. Nothing he said to McKew's seventh question is contradicted by events since.
  1. What about Western Australia?
Flannery: “Yet to be seen, yet to be determined”. Nothing he said to McKew's eighth question is contradicted by events since.
  1. South Australia and Victoria?
Flannery: Adelaide might have water quality problems. Melbourne is vulnerable to water deficits. Nothing he said to McKew's ninth question is contradicted by events since.

At this point, the discussion diverts to power and away from drought.

Hang on. In the nine questions about climate and drought, Tim Flannery said absolutely nothing that has been contradicted by events.

In other words, if your a slacker – a screaming loony climate conspiracist – like say Chris Kenny, the only way you can say one thunderstorm fits: “Don't think this is what Flannery meant when he said "..Sydney will be facing extreme difficulties with water.."”

In fact, if you think one thunderstorm disproves climate science, you're unfit to comment. Really. It's like a movie advertiser citing the word “unbelievable” in the advertisement, when the rest of the phrase was “rubbish”. 

Monday, March 03, 2014

A speech is not a story just because it's a speech

Really, it's too much. As in, Officially Too Much. The toad-eating supineness of the Australian tech press has me sick to the gullet.

Ever since the mid-1990s, nearly every tech journalist in the world has coveted both the credibility and the pay packet of the Real Business Journalist. See, you can take any press-ganged loser from the tech press, slide them into a job with (say) the Australian Financial Review, and effectively double their income.

A douche with a tech masthead is one-half a douche in business media. That's the cold equation that makes the tech press wank and dribble to prove their worth in front of suits, all the world over.

And it's really, really easy to make a tech journalist make them think they're AFR-fodder: expose them to suits.

Get a tech journalist in front of a speech by a CEO – or even better, to the extent of “do you need a towel sir?”, an interview with a CEO – and you have a stenographer.

Drop on a lunch with free booze and they'll use the table-napkin in place of the towel.

As far as I can see from what I've read from the speech Telstra's CEO, David Thodey, gave today, he said nothing remarkable. He delivered a boilerplate piece that had been written by one hand, PR-tested by another, market-tested by another, and lawyered by another. Four hands on one wank, which should say something but probably doesn't.

It's like a cornflake, really: telling the nutritional value between the speech and the paper it was written on would get you down to quantum physics.

But journalists present at the speech have things to prove: (1) it's worth my absence from the office; (2) I'm a journalist who can report a speech; and (3) I can extract nourishment out of the cardboard, if need be.

Thodey. Said. Nothing.

Nothing new, nothing of note, nothing of value, nothing that wouldn't worry some investors, nothing that wouldn't make some market smart-alecks think they had an inside run on some kind of information.

Because that, dear media, is his job. Never, ever do anything but reassure the investors.

Really: if David Thodey says “Telstra wants to be more intimate with its customers” – the only aspect worth reporting is that it's a statement of such visceral creepiness that you'd bloody sign on with Vodafone to avoid it.

If he says he's going to “protect shareholder value”, it's both his obligation and a repetition of the same chorus he's sung throughout his whole incumbency.

He said “digital first”? In case you idiots weren't watching, the entire Telstra network went digital while you were anticipating your first date. Like, that was 1990s news kiddies.

The customer is number one?” – I've never known of a Telstra CEO who didn't manage some variation on that theme. And my history of Telstra goes back to the late 1980s when it was still “Telecom”.

I'm sick utterly to my epiglottis with the idea that “a speech is a story merely because it was given”. What, the CEO didn't fall over on the stairs, declare himself a communist, come out in front of an audience, or grope the nearest biped before he came on stage? He just stood behind a microphone and read a script?

That's a speech. It's not a story. Save me.

Sunday, March 02, 2014

Dear supermarket shoppers …

Dear supermarket shoppers,

The reason my wife moves slowly is that she's sick. We're really sorry for the frustration it causes you, that you may have to either break your stride or change direction for a second.

The reason she suffers brief confusion is that her illness carried with it a little bit of brain damage. So she may, on occasion, take longer to choose a product at a shelf than it would take you. Again, we're sorry.

The reason I'm protective of her, and put my hand between your trolley or basket and her back, is that it takes very little to break her bones.

Your impatience does not give you license to shove her with your trolley, as has happened. Nor to poke her with your basket. Nor, because you're a six-footer with an attitude problem, to use your height and weight against her.

Lumbar 3 and 4 have already been fractured by a shopping trolley; I'm not jumping at shadows here.

What confuses me most of all is how much hostility is offered. Ms T didn't jump your queue or speak rudely to you. All that Ms T does is move slowly, and sometimes, take a moment longer to choose an item from the shelf.

If we get a passive-aggressive “excuse me” as you reach past her face, that's tolerable (albeit rude). But it goes far beyond that: there are many, many people who are enraged by the sight of someone moving slowly near them, and want to push them, prod them, punish them for frailty.

Back in December, I put my hand between an oncoming trolley and Ms T's back. I didn't speak, nor did I actually look at the person pushing the trolley: I simply saw it about to collide, and prevented the collision. For this, I received a torrent of abuse.

Why? What drives a successful and healthy thirty- or forty-something, most usually a man, to regard someone moving slowly somewhere within his field of vision as an affront?

That, I can't answer. But when I see people falling for the idea that the disability pension (which we don't receive) somehow encourages scroungers, and then I see them in the supermarket, I weep for the creeping nastiness that is poisoning Australia's society.

Tuesday, February 25, 2014

The vasculitis primer

In most of the articles I've seen and heard today, Harold Ramis dies of a rare disease, auto-immune vasculitis (correct) – and journalists have shown little curiousity to explain it.

I'm not a doctor, but since my wife, Ms T to you, suffers from auto-immune vasculitis, I thought I'd set down a brief explainer; I haven't seen many media outlets bothering.

We never saw it coming. Recently, she pointed out that in the January before the disease took hold, she managed 13 bushwalks in 30 days – all of them in the 5-15 km range, all rated “medium” or “hard”. Within 12 weeks of that glorious time, she was 32 kg, unable to eat or walk any distance, and (as it turned out) toxemic. Her once-d-cups were replaced by ribs.

What turned out to be auto-immune vasculitis had closed her celiac artery; this caused liver failure, which was manifest in stomach ulcers of horrifying severity.

The rest of the toll of the vasculitis, before it was discovered, was: a 95 per cent occlusion of her right carotid artery (with a thankful growth of “collaterals” that have actually kept her alive); the anterior communicating artery (in the head) doesn't show up on scans; one renal artery; one brachial artery in one arm, and a radial artery in the other.

The proximate cause is that the immune system rejects the blood vessels and attacks them. The resulting inflammation closes the vessels; and once closed, they don't come back. A vein taken from her leg keeps Ms T alive by feeding her liver; the others are gone.

The ultimate cause - what sends the immune system on a kill-its-host mission? - is unknown. Here's an observation: since 2000 the National Health and Medical Research Council has spent $86 million on quack medicines, and sod-all on auto-immune vasculitis.

And those who have read our travails over the years also know that in a serious case, the immune system has to be brutally suppressed. If corticosteroids don't work, the “gold standard” therapy is cyclophosphamide.

Now, chemotherapy has been the subject of a huge amount of research over the years, with two aims in mind: make it more directed to the disease it's treating, and reduce the toxicity of the side-effects.

Which has improved both the effectiveness of treatment and the quality of life for cancer sufferers.

Cyclophosphamide isn't one of the new, kinder drugs. It's a nasty, nasty piece of work. Developed in 1954, it's only a couple of generations away from mustard gas.

That's because this is a rare disease. If USA Today got things straight, Harold Ramis' presentation was that the vasculitis attacked the blood vessels feeding nerves, which Ms T believes would be even worse than her own suffering.

Prognosis? We hope that the cyclo dose doesn't kill, because without it, the vasculitis will.

Saturday, February 15, 2014

Nuance dies when Internet anonymity is debated

If you knew of the Internet before commercial ISPs existed, you were almost certainly connected through a university. The typical (say) pre-1989 Internet user would be a member of a university (therefore known to the systems administrator), connected through a serial terminal to something like a DEC VAX that acted as the university's node.

(I remember the great excitement with which a university systems administrator showed off something to me, in early 1990: he showed a document directory on a computer in America! That demo was all that he was willing to show, since the teeny-tiny 56 Kbps connection to America (I think) was supposed to be doing serious stuff.)

In that kind of environment, and given the fair chance that any Internet user was known to a fair circle of other users … anonymity was at best an ambiguous concept. At that stage, it meant at best “someone too distant from me to know or care who I am”.

As a long-time member of one of Australia's oldest Internet mailing lists, Link at the ANU, I can attest to a lively debate in the 1990s, along these lines: “Is the emerging trend towards anonymity a good or a bad thing?”

It appears that Link's archives don't reach that far back, but one of its members, academic Dr Roger Clarke, considered anonymity to be an active debate in 1996, when he set down this paper: http://www.rogerclarke.com/DV/AnonPsPol.html

Anonymity was not something built into the Internet from the start. It was a set of social behaviours that emerged later. And it's always been a topic that aroused opposing opinions for and against.

Right now, anonymity is back on the table, mostly courtesy of abusive campaigns that seek to silence the voices of science, political dissent – and quite often, women. Hence when Julia Baird writes an article like this, she cops insults for pretty much one paragraph:

"Surely much of this could be solved if Twitter insisted people use their real names, as Facebook tries to do. Why allow the violent and cowardly to hide?"

(I disagree with this, by the way, but it's not all she had to say. Nor will I reprise the abuse she copped).

Internet anonymity is a work in progress, people. 

It took years for people to think the Internet was a place where anonymity was possible (the famous “On the Internet, nobody knows you're a dog” cartoon, in 1993, documented the start of the debate, not its end). In more than 20 years, a consensus hasn't yet been reached.

It's disingenuous to pretend that there ever has been a consensus surrounding Internet anonymity.

It would be nice to have a mature consensus emerge – but that requires debate.

A legitimate component of that debate is: how to deal with chronic abusers of anonymity?

A couple of more points and I'm done.

  1. While not a survey sample, in my timeline, only men took an abusive attitude to Julia Baird. Well done, gents, now go and knock your heads on the table until the dimwit falls out.
  1. In a twenty-paragraph article, Julia mentioned a “real names” policy in one par, near the end. Rising up in a spitting fury over that one detail … well, it suggests to me that you're uncomfortable with dealing with everything else she had to say.
  1. What of the target's freedom of speech? In what way does a general freedom to troll outrank someone's right to publish under their own name?

Today, protesters standing up in their own skin are getting shot in Venezuela; for them, anonymity is moot.

Sunday, February 09, 2014

The sneers of the savvy don't help

If you didn't notice, Twitter got enthusiastic about a small show of solidarity for SPC Ardmona. In spite of various contradictions, the #SPCSunday hashtag took off.

Punters posted pics - “here's what I bought” or “here's what we made”, others posted recipies.

Beneath, however, there was the sneering undercurrent from those more concerned with “savviness” than enthusiasm. They boiled down to:
  1. I don't like the product anyhow, and Italian tomatoes are better.
  1. You bought the product from Woolworths or Coles, and they're part of the problem.
  1. You do know that SPC Ardmona is part of Coca-Cola Amatil, don't you?*
To the last two, I offer no argument; to the first, I'll just remark that you might want to run “Italy tomato mafia contamination” into your search engine and get back to me later.

The objections boil down to “if you want to change the world, you're doing it wrong”.

Yes: there is a obvious contradiction involved in going to Woolworths or Coles, buying a product from a Coca-Cola subsidiary, posting the results on a US-owned social media platform – all in a gesture of solidarity for farmers and workers in the Goulburn Valley.

I'd even bet that a fair number of people who ran with the #SPCSunday hashtag are actually smart enough to perceive the irony.

But ahh, the savvy: a habit of thought that transcends notions of right-or-left, because it's about the dull, grey, humourless gaze-down-the-nose at the folly of the masses. It's how I imagine a Catalan knight may once have looked at peasants having fun.

It's just another condescension, “shut up and leave the adults to talk.”

I address myself now to the savvy of the left: just how well did your strategy work in, oh, the 2013 Federal election? “Miserable failure” is how I'd describe it.

There is a fairly general agreement that “voter disengagement” is worth worrying about.

But it's not “voter disengagement” that's the problem – not directly. It's people disengagement. Get people interested, excited, and by the way having fun, and I'd guess it's a damn sight easier to bring their votes along with them.

What happens when the savvy see people engaged, interested, excited, and having fun? They put on the po-faced frown of the expert: “you're doing it wrong.”

No, we're not. You are. The savvy is the stealer of the soul of politics, the enemy of engagement, the excluder of the outsider.

During England's catastrophic Ashes series of 2013, the incomparable Kerry O'Keeffe, a fine analyst of the game, looked at the English high-performance coaching and risible dietary requirements, and lumped it under the heading “the one-percenters”.

His argument was that the Australian coach, Darren Lehmann, took a low-performing team and focussed on bowling, batting, and fielding. Only someone at the very top of their game, he said, had the luxury of focussing on extracting an extra one-percent of performance by exotic practises. England coach Andy Flower, he believed, was working on the one-percent of performance when the team was having trouble with the basics.

To the savvy of the left, I say this: your research and focus groups – the one-percenters – are no use to you right now. You need the basics: getting people interested, excited, having fun.

Sneering at an obvious success doesn't mark you down as intelligent, knowledgable or knowing. 

*It's been pointed out to me that CCA is majority locally-owned: how much difference this makes, I will leave to the reader.