Saturday, June 14, 2014

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.

Sunday, June 08, 2014

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”.
  1. You can't avoid GP visits. Some medications require a monthly review, even if it's an authority prescription.
  1. You can't avoid pathology, nor specialist or hospital visits.
  2. 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.