Federal Health Minister Nicola Roxon’s announcement of the addition of 13 new drugs to the Pharmaceutical Benefits Scheme comes as a huge relief, given that I’m currently taking one of the drugs on a time-limited “patient familiarisation program” supplied  by the company concerned (Novartis).

Yesterday, I posted on The Stump about my concerns surrounding the withholding of medications from the PBS:

The coalition of health bodies who are gathered under the banner of the Consumer Health Forum are releasing a letter calling on Nicola Roxon to reverse the deferral of PBS funding for a list of seven new drugs. This list includes gilenya, as I have previously discussed, the multiple sclerosis medication that I am currently taking as part of a program funded for a 12-month period by the pharmaceutical company.

Unsubsidised, it falls into the $40,000 + bracket.

I don’t take my entitlement for publicly-funded drugs for granted. As Nicola Roxon says, there are other areas of need in the health system. Hell, if we were to operate strictly according to the “greatest good for the greatest number” principle, then all the money spent on my healthcare should be ploughed straight into providing clean water to children in developing countries who are dying for the lack of it. As a “person living with multiple sclerosis” (another label — just what I need in my life), I am infinitely more privileged than many perfectly healthy people living in Australia, let alone in slums and refugee camps and war-zones.

But the short-term savings of withholding these medications does not make sense even on the basis of economic rationalism, let alone social justice. In the case of multiple sclerosis, all of the other medications suggested by my neurologist are somewhere in the general price-bracket of “hideously expensive” and with side-effects or possible side-effects that I find difficult to contemplate. Although believe me, I have still spent a lot of time contemplating.

However, I’m not going to break open the metaphorical non-alcoholic champagne upon news of Roxon’s announcement until the government reverses its decision to subject drugs recommended for subsidy by the Pharmaceutical Benefits Advisory Committee to cabinet decision-making. If this process remains in place, then many patients (including myself at some point, in all probability) will have to go through this waiting-game — a game that may or may not end in a satisfactory outcome.

I should add that one of the other medications that has been canvassed by my doctors was unavailable to me under the old system. That medication was suggested for pain relief — nerve-pain being notoriously resistant to relief, as people with a very wide range of medical conditions can testify. Unlike the drug just approved, the pain medication was not entirely out of my reach without the PBS subsidy.

However, it would have left a significant hole in my budget, so I gritted my teeth and settled for the cheaper, but according to my doctor, probably less satisfactory, alternative. And I’ve come through it intact, if grumpy. The pain lifted, although slowly — slowly — and not completely.

I don’t view the health budget as a bottomless well from which I should be able to draw at will. Where there are a range of effective treatment options, then cost should obviously be a factor in deciding between them. I did not visualise marching on Parliament House bearing a grim expression and a flaming torch because I had to settle for cheaper treatment as a first option, although I certainly think that other alternatives ought to be available as a second or third option.

But I’m not going to stake out Roxon’s office over that issue because the decision was not made by her. It was made by the Pharmaceutical Benefits Advisory Committee — and that’s the appropriate body to make such decisions. If they don’t always go my way – well, I won’t pretend to be cheerful about it, but them’s the breaks.

Of course, I will be less philosophical about that if and when the pain amps up again.

Peter Fray

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