Medical research lets the government wedge science

The Medical Research Future Fund is a sham, and medical researchers are falling for it. They already behave as if:

1. The MRFF exists, and
2. Medical research will suffer if it doesn't go ahead.

I'll bet Tony, Joe, Kevin and the rest of the toxic sludge of cabinet are in helpless fits of giggles. They've wedged the science community, with medical research distracted by the shiny and defending the fund's sometime-promise, while other sciences are being stripped of money today.

The big medical research charities have sunk either into a self-interested silence (shut up or the government will take it away), except for those that outright support a fund backed by a malicious attack on the poor. Of the 26 charities I've checked, everywhere from mental health to cancer support, none have directly criticised the GP co-payment.

Sorry, medical researchers, but you're backing the wrong horse if you think that “save what you can” is a sensible response to this budget.

Sorry, medical researchers, but you've been set to chase, catch, and defend a chimera. The government's purpose with the MRFF was political, not scientific: to recruit some part of the scientific research community that would defend the atrocious budget. And it's working.

Sorry, medical researchers, but if you support the MRFF you have to answer a very hard question. How many poor people will die because they can't afford the $7 co-payment that funds the blue-sky-sometime research fund that you're eyeing with avarice?

Research that already existed is getting cut, and you're letting yourselves get distracted by a shiny promise, and your distraction is a political tool of the government.

You're trading today's patient welfare againts tomorrow's political promise.

Even a brand-new medical research fund, starting tomorrow, doesn't cure people who are sick today. It will take years to get a result that can be put to a trial, and if the trial works, a couple of years to generate a result and become a treatment.

In the interim – say, the six years from 2014 to 2020 – it will be nothing more than a patent farm hoping to arbitrage what might work into what will generate money for patent owners.

And in the meantime?

People will die.

They'll die because the co-payment parlays into a cascading payment for anyone whose condition is more complex than a single GP visit.

People are going to die because of this government's policies, and the payoff of a medical research fund coming some day if the government keeps its promise isn't going to save them.

Because the whole thing is toxic, and if you believe that a promise to your special interest makes the budget less toxic, you've been tricked. You've been fooled, gulled, wedged: you've been persuaded to argue in favour of an attack on people who have no defence, because you've been given a promise by proven liars.

And you believe them, because your hope is louder than the whisper of good sense.

I will march against your Medical Research Future Fund because it's a whitewash designed to paint a patina of respectability on an odious impost on the poor. And no, I won't worry that someone might die in 2030 because I marched. Today's poor and sick need universal healthcare more than they need the promise of a liar.

The relentless diary of chronic illness

A point about chronic illness that's hard to grasp from the outside is the relentless sameness of it.

A really good chronic illness is so dominating. It commands the daily routine, and the weekly and monthly and annual diary. It changes everything, from high finance to housekeeping.

A chronic illness imposes its own shape on life. It embosses life with its own imprint, and it leaves precious little space on the paper to write your own story.

Its story – Ms T's illness – goes like this:

0530: Day starts with medications, some of which are soporific. Return to bed.

0630: More medications, more sleep.

0730: Wake properly, have breakfast. Rest of morning medication. Some of these make you feel ill.

0830: Return to bed to cope with nausea.

0900: Wake, shower (if well enough), dress, etc.

0930: Plan the day, starting (probably) with loading the washer.

Things will happen after 0930, but only slowly and carefully. If pain, nausea and diarrhoea are your companions, you don't undertake anything lightly. Trust me.

By 1000, you might feel well enough to plan, say, a shopping trip, and if nothing goes wrong by 1030, you will even commit to getting the 1050 bus. That gets you back home by midday as long as nothing goes wrong, in time to prep others' lunches (I am spoiled: if I'm working from home, Ms T always brings me lunch).

1300: With lunch over, take medications that mean a brief rest.

The afternoon will be occupied with trying to do things that must be done, fighting off the nausea of chemotherapy and the lassitude of so many medications, and trying to form a coherent plan for preparing dinner.

1730: Start preparing dinner, frequently with assistance. “Can you help me with the potatoes?”

1900: Dinner, perhaps with wine, and the TV news.

1930 to 2000 (depending): More drugs, shower or bath (if too unwell to shower in the morning), bed.

A high-quality chronic illness – not cancer, in Ms T's case, an immune system disorder that can only be held in check with heavy chemotherapy – might leave the sufferer with four hours each day that aren't dictated by the illness.

The chemo has its own life. Ms T has been prescribed cyclophosphamide on various frequencies between fortnightly and (thankfully, currently, quarterly).

And that doesn't count the diary items. Once a fortnight, sometimes once a week, there's a GP visit because of all those drugs need prescriptions. At least once a month, averaged over a year, there's a specialist appointment at a hospital. Twice a year, on average, there's a procedure that requires at least a day-surgery visit to hospital.

And there's the pathology, which never ends.

This is the invisible life that the nasty right-wing punishers and straighteners don't understand.

If you're chronically ill:

1. You have no “normal life” into which might be slotted “employable”.

2. You can't avoid GP visits. Some medications require a monthly review, even if it's an authority prescription.

3. You can't avoid pathology, nor specialist or hospital visits.
4. You will almost certainly be reduced to a single income, at least some of the time.

We're lucky. We have survived so far without needing more of the social “safety net” (a term I despise) than our medical system.

But I'm outraged that the rich are happy to consign others to – in effect – death, because they see chronic illness as some kind of divine punishment, rather than misfortune.

This government is made up of evil men who actively detest the people they govern, and want them to die.

The Business Council of Australia's stupid crusade against the weekend

As well as a journalist, I'm a small business. I don't talk too much about Bunjaree Cottages in these blog posts, but it's there.

The Business Council of Australia scares me.

It'll go on the radio at every opportunity telling me that it represents small business, not only big business, but its prescriptions for the economy are a recipe for disaster.

Listening to 702 this afternoon while I wrapped up my day's work, I heard some muppet from the BCA espousing the abolition of penalty rates again. Because retail and restaurants and coffeeshops want it that way.

At some point, asked by Richard Glover about peoples' right to a lifestyle, the BCA spokesman rewarded us all with a lecture about being a 24x7 online economy (hang on, though, wasn't he talking about the needs of retail stores and restaurants and coffeshops?).

It's like the BCA doesn't understand the intersection between society and the economy.

Look, you idiots, if nobody has a weekend, any business that relies on weekend trade is done for.

Look, you idiots, if nobody has money for discretionary spending, coffeeshops and restaurants will suffer.

What it feels like to me is that the BCA is utterly committed to an ideological crusade against unions, and it doesn't care if a business like mine is sacrificed to its endgame, the abolition of the weekend.

It – the BCA – will damage the economy in the long term, erode society, and along the way (I confess my interest) suck the life out of a business like mine. Why? So it can pound its chest about beating unions.

They're idiots, and they scare me.

Speak truth – to the powerless

In the hands of fools, a good aphorism turns into a misdirection (including this one, although I'm not vain enough to consider my aphorism all that good).

Take the role of the journalist, which by old usage is “to speak truth to power”.

Either the Quakers coined the phrase, since they lay claim to it here, or they borrowed and popularised it.

Either way, it has nothing to do with journalism. The full book title from the Society of Friends is: “SPEAK TRUTH TO POWER – A Quaker Search for an Alternative to Violence”.

Nothing to do with journalism, then. But it got plagiarised and popularised, embraced, adopted, and extinguished.

“Power” is, right now in Australia, engaged in theft, deception, oppression, and corruption. It doesn't care about truth, it only cares about holding its power to its chest, long enough to deal a crookedly-shuffled deck of cards that will put all the aces in the hands of its backers and ideological fellow-travellers.

The role of the journalist is not to “speak truth to power”, for a very good reason.

The powerful aren't listening. At best, they'll invite you in to tea to make you feel important. They'll pick winners from those that speak, those that rise, and make them insiders.

If you're insidered by politics, you'll be comfortably and painlessly neutered, captured by process, and you'll seamlessly and quietly stop thinking about speaking truth to power, to be instead captured by another aphorism, “the art of the possible.” Eventually, you'll become irrelevant or detested.

And before you tell me it can't happen to you, note: Peter Garret is still maintaining a distressingly neutered silence, even out of office. His aggressive stance has turned defensive.

Today's “art of the possible” in Australia is a vicious, nasty, small thing that involves robbing the public on behalf of the rich.

If you're insidered as a journalist, you'll become part of the Canberra Gallery, and most of your audience will be other insiders, which is pretty damn useless.

The job of the journalist is not to “speak truth to power”. It's to speak truth to the powerless.

Because the powerless are the readers. You know, the ones whose eyeballs your oh-so-detested sales people are trying to sell.

The powerless are the audience that needs the truth.

They're getting screwed over, ripped off, made to pay for the high lives of others. And meanwhile, they're not getting told the truth.

They're not getting the truth, because the technique of subversion works so well.

Make the journalist an insider, and truth dies on a crucifix whose nails are comfort, tenure, and leaks.

And the sign over the head, as ironic as Pilate's “King of the Jews”, reads “Speak Truth to Power”.

The only way the powerless can learn, organise, learn to hate, and refine their hate into organisation, is if they're told the truth.

Speak truth to the powerless.

Addendum: The more I think about it, the more that the application of "speak truth to power" to journalism exemplifies a brilliant, seductive and utterly cynical application of the phrase.

In short, it means "talk to us, not to them." Which both neuters journalism - since it confines it to a cloistered insider audience - and excludes the mass audience.

And it appeals to the journalists. Unless we're even more mentally disturbed than our peers, being close to power is nice. You wear better clothes than people on the sport or crime beats, get addressed by name by politicians in public, and get to live on the inside.

Pwned by Apple, in my own home

[Everything that follows is fiction. I'm just having fun with the idea that Apple might want to own the world of “smart homes”.]

I was trying to get in out of the rain, and wasn't having any luck.

I was in a hurry because it was my wife's birthday, it was raining to flood the Holy Land, I'd only just managed to keep the flowers intact in one hand, I wanted the backpack containing my work computer indoors before it got damaged, my umbrella had started the afternoon in the CBD and was by now probably passing Newcastle and heading north...

It wasn't a good day.

It wasn't that the door of my home no longer had a key, I was used to that. But last week, the system demanded I reset the code to unlock it, and I couldn't remember the new one.

I'd have been worried, but “there's an app for that”, and it'd been installed when the gent with the screwdriver finished upgrading my home, and all I had to do was ...

“Siri, please open the door,” I said to the iPhone.

The phone asked for a password that I couldn't remember, so I asked for a password reset and waited for the confirmation message to arrive. Getting wetter.

Sure, there's a porch and I was notionally under cover, but this was not “oh, it's raining” rain, this was the kind of rain that floats small buses up against walls. I was getting wet, and not just my legs. The splash from the torrent had me crouched under the porch-lamp trying to shield the phone with my body.

With wet hands, getting the new password into the phone was a pain that took three attempts. And then the phone dropped a bombshell.

“Important security upgrades are ready for your iSmartHome application. Please install and restart your phone to continue” was the next thing on the screen.

There was no “later” button. Just a “Install and Restart” button. So I did.

The lightning was the kind I quite enjoy: if I'm on the inside of the house, sitting in the dark after dinner and maybe some wine, looking out the windows. With me on the wrong side of the door, it was jump-and-catch-your-breath stuff.

“You need to accept the updated terms and conditions on the iSmartHome application to continue,” the phone said to me, reciting the text on the screen.

“Siri, I don't suppose we could wait until I'm inside to do the legals? It's raining out here. It's also six degrees, I'm already soaked, and I'm cold.”

“You need to accept the updated terms and conditions on the iSmartHome application to continue.”

Have you tried to read a six-thousand word legal document in three-point type on an iPhone screen? Nor have I. I scrolled quicksmart to the bottom, checked the “accept” box, and clicked “OK”.

Then I waited.

The street – only a handful of metres away since it's one of those early-20th-century homes where the front door is set back only a few paces from the footpath – was becoming worryingly overflowed.

Eventually, the phone informed me:

“The free trial period for your iSmartHome Control Centre has now expired. Would you like to upgrade to the full version for $29.99?”

Nobody mentioned trial periods, but did I have a choice?

So of course, I clicked okay as a large gopher-wood craft made its stately way between rows of parked – occasionally on top of each other, now – cars. Perhaps I'm exaggerating, but …

“To complete the upgrade, please link your iSmartHome Control Centre to your iTunes account” was the next dialogue, as unicorns forlornly swam by trying to catch up.

One thing.

I didn't have an iTunes account. Hadn't bothered. Now I needed one. Great.

Swearing like I was on 4chan, I navigated the sign-up menus until finally I was offered a chance to return to asking the damn phone whether it would kindly have a polite chat to the damn home control system to open the damn door!

Oh, now it wanted a credit card number. Fair enough: rest my backpack on the doorstep, fish my wallet out of a pocket – not that one, somehow a medium-sized carp seems to have landed there, probably from someone's outdoor pond – squint at the card under the porch-light, try to read the embossed numbers that lose their silver ink ten minutes into the life of the card don't you hate that? – and try to key the numbers into the screen because I feel like such a goose yelling my credit card security code at my phone, and wait.

“Validating”.

You know what? Tapping your feet impatiently when your shoes are full of water doesn't help. I couldn't think of better, so I kind of squished ineffectively while I waited.

The screen popped up a reminder, that it was my wife's birthday. I knew that (see above), and the flowers weren't faring well and I just wanted to get inside.

“Validating”.

The rain seemed to be easing, at last. A raven flapped at me from the front gate – they don't hover well – but perhaps the expression on my face put it off. It left rather grumpily.

“Validating”.

The lightning hadn't stopped, though. Just as I was starting to wonder whether that was affecting the phone's communications, the screen blinked and a message appeared.

“We're sorry. This credit card cannot be used for purchases on the US store. Please contact our helpdesk for further information.” There was a number at the end of the message.

I was still leaning against the front wall crying when a motor scooter parked on the footpath and a delivery kid ran up the steps carrying pizzas in a heat-pack. He barely glanced at me as he reached for the doorbell.

The “job snob” myth

Well, yes, since you ask (I realise you didn't), I am qualified to comment on the “job snob”.

Apart from the things that I would count as my “career” – training in electronics, caring for stadium sound systems, the shift to journalism, six years as an analyst along the way – there have been the things I did merely to eat and pay the rent.

The short job as a general labourer in a theatre, I won't give in any detail. Suffice to say that the person I answered to cared nothing for OH&S, and I quit.

I had a couple of stints as a courier. Why not? I had a car, I know my way around most of Sydney without resorting to street directories or – these days – GPS, and it almost paid the bills.

And there were a couple of years in the 1980s when I was hosing out Luna Park for a living (there was a small premium for someone who will arrive at 4:30am without complaint).

I still think politicians – especially specimens like Tony Abbott (professional career: university to a brief stint as a journalist, then into politics) and Eric Abetz (barrister and solicitor, then politician) – are talking through the wrong end of a long arse when they bang on like this:

“People have no right to hold out for the job of their dreams while they are on unemployment benefits.” – Tony Abbott.

“Tasmanians … simply don't want to take the jobs that are on offer.” – Eric Abetz.

Abetz went on, in talking to the ABC, to support Abbott's idea that if you can't get a job in Tasmania, you should be applying for jobs on the mainland.

It'd be nice to see a shred of human decency in their vicinity, even if these guys are only carrying it around because it stuck to the bottom of a shoe when they last stomped on a beggar's face. Alas, no.

Look: it takes money to get a job. Let me pick a place in Tasmania, say, Devonport, and put the job interview in Melbourne.

Right now, the best available Jetstar from Launceston to Melbourne is $45 (not including its extras), making the flights a minimum $90.

But you have to get from Devonport to Launceston first – the train that leaves at 8am arrives at 9:15, which lands the flyer outside the typical “hot price” flight times. Oh, the train costs $24.50 return if you're unemployed and therefore on a concession, otherwise the return is $49.

And then there's Tullamarine to Melbourne. Take the Skybus, it's a $30 return.

To make the journey for the interview – let's just skip the business of moving for a minute – is in the order of $170. That's completely out of reach of someone who's unemployed. Especially since there's going to be that dreadful second short-list interview to go through.

Now, the blithely ignorant statements that someone looking for work should “go where the work is”.

That means moving house. You've just spent the last six months on zero benefits at all (the nasty, vicious, nocturnal emission of smug, sleek libertarians), you spent your last four hundred bucks on the interviews, you're borrowing from friends to get over to Melbourne on the weekend so you can start on Monday.

You've got no home sorted out yet, you're just about to leave all your furniture behind, and all that was available anyhow was in fast food, and you're still not sure how many shifts you'll get each week. And you're paying for accommodation in two places because you had to leave the wife and kids behind …

But no worries, you can send for your family and your stuff just as soon as your paltry wage lets you put together a spare thousand or two for the transport.

These guys are out-of-touch in that special way you can only achieve when your body inhabits an ivory tower, and your brain is off chatting to Ayn Rand sitting at the right hand of the almighty.

Healthcare, disruption and death

The other thing that the right has done with its toxic “safety net” label, a form of words so easily and unthinkingly adopted, is to make an association that public hospitals are for the poor.

Yes, I'm sure that a government member that's schooled to consider $20,000 lunches and $60,000 gifts and all the rest as normal – people in that class probably do think that way.

Now, I'll paint a scene: since Ms T has a minor procedure next week – an endoscopy – today we had to line up at St George Hospital for the pre-admission clinic (now there is a process that could be made much more efficient and cheaper, but that's for another day).

The talk in the waiting room – with no dissenting voices – was the likely horror that the government is preparing for us, by way of Americanising the health system. The only individual who didn't participate was the one that had an interpreter handy. Elsewise, the voices in one of The Shire's major hospitals were unanimous, that the government is on the wrong track.

And these weren't poor people. At least one of them was worth more on the hoof, once you count clothes and jewels, than I would usually spend on a car.

Hang on, what's someone like that doing in a public hospital.

It happens that St George has some a bunch of very good gastroenterologists, both on the diagnostic side an the surgical side. And in at least one case, Ms T's specialist, the focus is on the public system.

We first met him in the public system at RPA, he saved Ms T's life with a diagnosis that was, strictly speaking, way outside his speciality. Her gut had brought her into his care, other specialists were dithering about the diagnosis so much that she was in danger from the wait, so (let's call him) Axel made a call and got it right.

Which is why we followed him from RPA to the 45-minutes-distant St George. One of these days, he's the kind of doctor that will get an Order of Australia.

And he's still in the public system – that is, if someone says “you need the best”, they won't be sending you to the nearest private, because Axel isn't there, he's in the public system.

I think that's where he thinks he can do the most good.

I've never asked him about this, because in spite of a very-well-crafted persona that he presents to the world – confident, polished, in charge, smooth, articulate and all the rest – he's also modest. My family once encountered his at a farmers' market: his blush when I told his wife “he saved Ms T's life” was so delicious I'm grinning wildly as I remember it.

Back to the “safety net” theory.

The Liberal narrative that public hospitals are a safety net is not only insulting to some of the country's best doctors, it's manifestly untrue. It's untrue in a way that could only be adopted by journalists who have had very, very sheltered lives: they've never been told that your best or perhaps only hope is at RPA, so don't go to St Vincent's Private (since it would just be a transit trip anyhow)?

Ms T had, at one point, four professors considering her case – all in the public system. If, as is the endpoint of the Liberal philosophy, the public system is destroyed, the professors will still be there – but only if you're rich enough to be insured to your back teeth.

And the training of those professors – at least three of them regarded as gods of their specialties (guts, cardiac and immunology), as well as “Axel” – is down to the public teaching hospitals, and they're all still in the public system.

See, the public system isn't only a “safety net” for the poor. It's also a “safety net” for people whose malaise defeats the narrow silos of private health-care.

Before Ms T landed at RPA's emergency department, she was in the hands of a private clinic of note: one of its “names” gave the world the antibiotic treatment of helicobactor pilori. I don't blame them that they utterly mis-diagnosed Ms T, because it was them that sent us to emergency and saved her life.

The collegiate model, in which a big teaching hospital has access to a bunch of heavy specialists at call in the public system, doesn't just help the patients. It also helps the specialists and the teaching of those who will come after them.

Sure, the warriors of the libertarian right will say that America can produce hospitals that could replicate my experience at RPA that are wholly private. But – ignoring questions of equity – America's hospitals are an artefact of its history, exactly as Australia's hospitals are an artefact of ours.

It's absurd to think that you could take one template, impose it over an existing system, and achieve the same result without an atrocious amount of disruption on the way.

Healthcare isn't a taxi service: if you disrupt a working system in taxis, as Uber is doing, people will lose money. If you disrupt a working health system, people will die.

Don't let “universal services” be turned into “safety nets”

One of the ways the political right beats the left is by being more effective at choosing the battleground of debate – by getting others to adopt their definition of what the debate is actually about.

When it comes to Medicare, unless the ALP, Greens and other centerists claim back the language, their defeat is inevitable: it may come in this budget (I hope not – I hope the ALP finds its courage down the back of the lounge), or in ten years, but it will come.

Here are a few articles written by relatively well-heeled journalists on all sides of the political spectrum.

“Joe Hockey's GST Ploy Jeopardises Safety Net” - Sydney Morning Herald

“Tony Abbot's Trust Deficit” – The Guardian

“Treasurer Hockey stresses culture of work” – The ABC

“Joe Hockey's Federal Budget Prediction: Lower Growth, MoreUnemployment” – Sydney Morning Herald

“Joe's Plan Makes Us Hostage to Fortune” – The Australian

“Australians Slugged $7 for Doctor Visits” – The Courier Mail

What these articles all have in common is that they cheerfully describe Medicare as a safety net – and many, many on the left also do so when they're defending it.

My cluestick: “universal” and “safety net” aren't the same thing.

“Safety net” means “we reserve a minimum and usually inadequate standard of care for the poor”.

“Universal” means “everybody”.

Two things happen when “universal” is ghettoed into “safety net”:

1. The definition of what should actually exist inside the safety net is in the gift of the powerful.

2. Because of (1), people will be marginalised.

The marginalisation won't, however, be the careless marginalisation that happens when lawyers define the mission of a charity (I've written about this here). It'll be a matter of deliberate policy: the government will pick winners and demonise losers as an exercise of power.

It's already on the agenda. If you don't believe me, read through the Commission of Audit report. It's all about picking winners and demonising losers.

There's another point to be made: narrowing what Medicare actually offers is also deliberately destructive: “this service is accessed by too few people, and is becoming expensive to deliver, so we are going to pass it over to the private sector”. The previous blog post I linked above provides an example of this in action.

By reducing the mission of Medicare, you reduce its efficiency and effectiveness at the edges. The edges get trimmed away – only to reveal the next edge, the next target. This isn't accident, it's strategy, with its aim being the dismantling of the public healthcare system.

Characterising Medicare as a “safety net” is an exercise in propaganda. It redefines the mission of Medicare in a way that is exclusively to the benefit of the radical right, because “safety net” and “universality” are exclusive. The same goes for things education, unemployment support, pensions and disability services.

Mainstream journalists – who approach the medicare debate from a standpoint of being well-paid and well-insured – adopt the language of “safety net” because they lack personal experience at the margins. Politicians of the right do so out of strategy; and politicians of the left do so because they feel powerless to drag the debate back onto their own battleground.

Often, battles of language are trivial, but the confinement of social rights into the “safety net” ghetto is an important battle that has to be fought, or the left will lose. 

A star and a compass

After nearly five years in the somewhat intense world of advanced medicine, you get a lot of experience of all levels of the training of medicos, from students dutifully trailing behind specialists, all the way to “I just got a really good posting, goodbye”.

In the middle of this there are a lot of medical registrars. A lot of them: we've had them in gastroenterology, cardiology, immunology, renal – not to mention the suffering and sleepless registrars that staff the emergency departments, and the harried, apologetic registrars in ICU.

Some seem to be merely meat in a sausage-machine of training, but very occasionally, from the patient side, you get to see the genius, the stand-outs that you know can do well, because.

Because they're more thorough than the rest.

Because they care more than the rest.

Because they know more than the rest.

Because they fear more than the rest.

It takes its toll.

You, the public-hospital registrar of yesterday's visit, you are suffering and we see it. You've got too many patients who will die before you get to replace “registrar” with “specialist”, but since it's your third return to the same place, Ms T and I suspect which specialty has caught your passion.

You're young – I don't do well at guessing age, but you're about 30 – and your hair is greying too fast.

Your face should be relatively unwrinkled, but you scowl at your own decisions and doubt your reassurances that things are going well. So it's not.

You try to cover your forehead with your hair, because you don't want us – the patients and their carers – to see how much you wrinkle your forehead when you're fretting about what will go wrong next.

We see this, because we've seen you when our lives were at their darkest.

You once hugged Ms T when you apologised that you couldn't do more.

You fret and frown and add another grey hair when choosing between an X-ray or a CAT-scan (one is less sensitive, the other has more radiation).

You worry and apologise and fret and hug, you think and calculate and worry some more, and it's makes you better and kinder and more loved than those who live their lives in a sausage machine.

You're going to do good, and with a little luck and opportunity, you will be great. But it's going to hurt.

You can't save everyone, and every death will hurt, because that's already the story in your eyes.

But there's this: there will be wins and lives saved and families preserved. Lovers will love, children will grow to adults, and their lives will be your reward.

Your care, your fanatical attention to detail, your shining intellect – one day, a leap of intuition and a guess that “we should check that” will mean someone will send you presents each year because they or someone they loved got a life they didn't expect.

Treasure that, and make that your star and compass.

Ms T and I know that it's more than likely, one day, that someone will have to let a hammer fall. Know that if it's you that pronounces the dread words, says “I'm sorry, but ...”

If someone has to say it to us, we'd not just forgive you if it were you, we'd love you for taking the burden of saying it. We'll still know that we were lucky to know you, because we know you'll do good in the world.

But it's a burden to you, and we know it. We hope the burden doesn't break you, because in your future, the patients you save will love you for it.

We do. 

Bravery: Friends are better than "narratives"

When friends talk of strength and bravery in the face of illness, it's a blessing, even though Ms T and I aren't brave.

Well, perhaps we are. Perhaps I am. I try. I get there sometimes.

There are the other times, though. The times I'm not brave: wishing things were otherwise at 2am, wanting a life less lonely, hoping the latest lump is nothing (it was nothing, this time), lost in the concentric circles of cascading cares.

When an old friend like Sarah (not her real name and not the same one as either of the other two) has a longish public conversation with me, spending most of it with at least one arm around me and often both, and talks of bravery, it's a support and a blessing. I know Sarah's battles – with cancer, a long time ago – her recovery, and she knows ours, and when she blesses our courage, it's in the context of a friendship of more than twenty years. Were I to break in the face of the enemy, falter in my resolve, cry in a corner, whatever: Sarah won't despise me for it, because she's a friend.

There's another bravery out there, and it's not a support, it's a burden.

It's the bravery not of a friend's arms, but of a pop-culture narrative. The pop-culture bravery, the “plucky survivor” narrative, given extra human-interest colour by the “never-say-die” carer who juggled everything, held it all together, smiling at the five-year mark as they embark on a new journey. Hooray.

Behind the cheery smiles and the media-constructed narrative are imperatives that have hearts of flint and do not forgive: “you have to believe you can win”, “you have to keep smiling”, “you have to be strong”.

In this world, dignity is a demand, rather than the real-world's desperate fight to look normal when you're bedevilled and in turmoil.

I can't be perfect or strong or brave, and I'm not even the one who's sick here.

The burden of perfection, living within the narrative, is imposed by people who lift not a finger to help – the TV producer who sees the perfect tear-jerker story in a still-youngish, still-photogenic Dick and Jane; the inspirational celebrity whose story is written in easy cliché by a lazy journalist (with a link for donations to a foundation at the end); today's success story who is mourned a decade hence with not even a nod to the misery that accompanied the end.

I'm not that brave, really I'm not. I can't live a narrative, only a reality. My imperfections abound and rebuke me at two in the morning.

But I have friends, and I hold them closer than the media narrative. Friends don't merely talk of strength and bravery: they are the means and the arms and the muscles and the love. And while the cold screen in the corner of the living-room chatters about a bravery that doesn't exist in real life, I'll be a loving coward and hope it's good enough.

If I can merely be good enough for Ms T and the loving friends that hold me and care, it's enough.  

If you applaud “high premiums for smokers”, you're an idiot

Oh well, I may as well stay on-mission for now.

An insidious suggestion from the Commission of Audit is that health insurers be able to abandon community rating, and put a loading on people with elevated risks, citing smoking and obesity as examples.

That not only sounds reasonable, it's the sort of thing that will get a lot of endorsement from people who are incapable of thinking through the aim of the proposal – which, like pretty much all the Commission of Audit proposals regarding health (and the states and taxation), is directed towards an end to the Evil of Universality wherever it may lurk.

“Sure!” people will cry. “Let smokers pay more!”

Let's leave the logistical issue of proving, at a given moment, that someone's telling the truth when they fill out an insurance form, ticking the box “non-smoker”. That's a trifle compared to the naked evil of the commission's drive to end universality.

If you okay one common risk factor to be a premium loading, you okay all of them. Good, you've inflicted a punishment on someone you detest: can you guarantee that you have zero lifestyle choices an actuary can't sling a loading onto? If you think you're okay, you don't know actuaries.

I usually hate “slippery slope” arguments, but it's in play here. Once the insurers hire enough pure math graduates, remove their soul and personality, and turn them into actuaries, it won't end with “let's slug the smokers and the fatties”.

There will be an endless drive to locate “risk factors” and price them into health insurance – as there is over in America, the ideological model of what happens when evil minds command public policy.

Once the easy “risk factors” have been found, there will be an endless actuarial drive to slice the sausage more finely. If you don't believe me, take a look at all the inventions health funds have created to attract members.

In the Australia of “community rating”, health funds don't introduce fringe benefits because they like you: they judge – their actuaries judge – the cost of a token “alternative therapist” is trivial compared to the new customers' premiums.

The actuaries that say “okay, include a Reiki master” in their benefits are the ones that will, within a nanosecond, get redeployed to identify every possible “risk factor” and train newcomers to do the same, so they can create a product with a thousand boxes to tick before you get told that your premium is something you can't afford.

And when you've been turned into “insurable”, “insurable at a premium”, or “forget it”, you'll find yourself turned out into the Commission of Audit's idealised model of a private health system, in which insurers will argue over the treatment they'll approve, instead of – as now – getting the treatment you need on Medicare.

Actuaries look boring: in a health system, they're efficient murderers whose hands are never stained by blood.

This is the purest evil that a mind of malice could conceive. People will die, and if you don't believe it, look only at the graphs that Greg Jericho displays in this article. America – the country whose template is admired only by people like the commission, who have no money worries – can't match Australia's lifespan.

Why is that?

Because people in America die rather than turning their own families out of their homes to get treatment. 

Because people in America can get turned away from a hospital without the right insurance.

Because the toxic ideologues that think shit can be turned into gold if it's processed by the right buzzwords actually like America that way.

Because the kinds of people that resent sharing a taxi with its last occupants so much they create a loophole-as-a-service “app” like Uber that looks wonderful until people die at the hands of loophole-exploiting drivers just do not understand what's good about a universal service.

America is a bad model for everything if you're not rich enough to ignore what's wrong. The same country that will train ideologues to chant “universal healthcare is socialism” will whine like babies that their once-universal Internet service is now modelled on their nasty healthcare model: dying or downloading, America wants you to pay for the fast lane.

That's not Australia, nor is it rational, fair, or an Australia I want.

The Commission of Corruption

Oh, you have to be kidding.

In NSW, corruption hearings in the ICAC haven't just claimed a decent bag of NSW politicians: federal politicians have also had their careers dented by being named, fundraisers have been thoroughly traduced, and …

That same party wants to create, at a federal level, corruption honeypots of unimaginable vastness, courtesy of the report of its hand-picked commission of audit.

Apart from its nasty attack on the poor, the sick, the unemployed, the student, and the scientist; apart from its naked embrace of failed ideologies as the basis for policy; apart from its utterly risible inclusion of Institute of Public Affairs wish-list policies like a legislated cap on tax take as a proportion of GDP …

…Apart from all this, the thread of privatisation runs throughout the document, and not only in the selloffs of the Snowy hydro scheme (an IPA idea), Australia Post (also an IPA idea), the NBN (already planned), the Mint and so on. It's also in the privatisation of service delivery in health, disability services, and so on.

You'd have to be a first-rate idiot, blind and ignorant of what's been happening, to think that self-interest appears nowhere in an entire political party when an unimaginably vast money-pot is opened up, after it's already been exposed by the NSW ICAC.

Buy shares in brown paper bag manufacturers, people, because there's going to be a shortage. 

Venality is written large in the Commission of Audit's recommendations, far beyond the list of privatisations: putting NDIS out to contract, outsourcing visa processing and passport production, outsourcing the Department of Human Services' payment system, and so on.

The Commission's aims are so naked it's an embarrassment: 

• Cut taxes for the rich
• Cut services for the rest
• Pour money into the private sector in the name of efficiency

There are recruits and cannon-fodder, as there always are: dupes who believe passionately in an ideology and can't feel the corporate hand at their back. And there are knaves, who pretend to believe in the ideology but are in it for the honeypot.

We know the knaves exist. ICAC has proven it. It's now down to us: if we don't stop them, they will feed on the misery of the sick, the degradation of the disabled, the starvation of the poor, the theft of services and society to enrich the choice few that are already rich enough and large enough to bid for the contracts.

An odious proposal: privatising public health

Here's a few items whose juxtaposition is disturbing to me.

The first, discussed in detail in this earlier post, is that the private charity that runs Lifehouse at RPA excludes “non-malignant” patients from chemotherapy services, even though these were treated at its predecessor facility, the Sydney Cancer Centre.

The second is that Barry O'Farrell, while not attracting an accusation of corrupt conduct against himself, was so immersed in an environment in which wildly extravagant gifts were normal that he didn't send back a bottle of 1959 Grange, even though it came from a lobbyist who later sought favours from O'Farrell's government.

The third is this article in the Sydney Morning Herald, in which the new premier, who is known to have had contact with the same lobbyist, Nick Di Girolamo, wants to see NSW public hospitals operated as public-private partnerships.

Mike Baird, you have to be kidding.

The stench of lobbyist interests around privatisation is now ineradicable: Barry O'Farrell was presumed to be too straightforward and honourable to stoop to any kind of corruption, yet he fell.

Should the new premier seek to splash around contracts to put state government services under private management, he'll be putting a vast honeypot in front of private lobbies. It's doubtful, after the Chateau de de Honnête Homme incident, that any process could pass the “sniff test” in front of the citizens of NSW.

Who is going to believe that a lobbyist contacting the government about hospital privatisation is doing so innocently, when Barry the Upright couldn't smell a rat over the bouquet of a rare wine?

Who is going to believe that a “study tour” of US and UK private hospitals is anything other than a junket?

Who is going to believe that politicians won't accept board posts as their post-parliamentary payoff for handing public services into private hands?

After the fact will be too late. By the time the stench of favours-for-sale ejects a government, the damage will be done. Patients will be marginalised because that's what happens when the “mission” of a hospital is defined by private contract. The state will receive its health services with a profit margin on top, because the private providers need their profit margin.

The contracts will be drawn up by toxic lawyers whose brief from private providers will be to define their obligations as narrowly as possible and their financial entitlements as widely as possible.

As Mike Carlton writes, “the Liberal Party state machine is rotten with spivs and shonks, touts and urgers, spongers and leeches, bludgers and layabouts, shysters and shifters, corridor whisperers and sleeve-tuggers. It is infested by the buyers and sellers of power and influence. If it never plumbed the dark depths to which Edward Moses Obeid and his cronies dragged the ALP, it was still sloshing around in the same sewer.”

There's nothing about the idea of letting the Liberal Party's spiv mates get their tainted claws onto the public health system that isn't entirely odious. And afterwards will be too late.

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.

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.

2. 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.

3. 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.

5. 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.

6. 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.

7. 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.

8. 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.

9. 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”.