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.