Posted 7 August 2019
It may seem an almost unnecessary question to ask, 'Who is the PBS really for?'. The obvious answer is patients, but of all the voices clamouring for attention in the process of deciding whether and how much governments will pay for drugs, patients can easily be the least heard.
In practice, the PBS is a often system captured by expertise, bureaucracy, politics and commercial interest.
Despite what it would say, the Health Department frequently behaves as if the PBS is 'for companies'. It hands off responsibility for the effective operation of the system to companies (sponsors) and is preoccupied with keeping them in line and making them pay for the privilege.
It would argue that sponsors stand to make hundreds of millions from the listing of a drug so they should be prepared to fork out a million or two to get it through the gate.
After all, sponsors are the 'winners' while, from the government point of view, the listing of a drug just creates a big and ongoing bill.
In all this bureaucratic control, patients may rarely rate a mention.
Companies (sponsors) legitimately pursue their commercial interests as far as the system will allow, to the extent that when the price offered by the system is commercially unviable, they can and do choose not to supply. This is often painted as recalcitrance by the bureaucrats, inferring sponsors are ultimately responsible for lack of access, but much of that is just politics.
Expertise plays a massive role. In a system where decisions are binding on governments, the experts hold great power. Their expertise is dominant in much the same way as a football referee is dominant over opposing players. We trust them because of their scientific credentials but their activities are arcane - especially to the folks for that the system is supposed to support: patients.
But the bureaucrats and experts will argue that patients have input, more than they ever did.
It's true but they are often like the crowd at the football match, shouting from the sidelines. Can they influence the ref? Many (including the ref) would say yes but not nearly as much as the other parts of the show.
Now patients (consumers is the jargon) are being encouraged to do more and become more expert via initiatives such as the Consumer Evidence and Engagement Unit but this will be a challenge for volunteer organisations. They will need help in catching up with the demands of the experts for quality over quantity in submissions and for a lower key approach.
The ultimate fallback is to say that everyone is really working on the patient's behalf but in reality, everyone is engaged in a very delicate balancing act that can too easily be tipped away from consideration of patient needs by politics, bureaucratic attitudes and the pressure to do things on the cheap.