Consider a world in which an advisory committee oversaw PBS decision-making, comprising 21 representatives of only patient organisations and clinicians.
This committee would operate under a statutory framework requiring it to weigh the human and clinical impact of its advice against the government’s fiscal interests. It could not reject funding for a medicine without considering the human consequences of that decision. Where it did reject a submission, it would be legally required to provide a detailed explanation quantifying the human consequences of its advice, in terms of suffering and death.
Some readers might suggest that they would recommend everything. Possibly. Yet would that be a bad thing if the recommendations were based primarily on its prioritisation of human considerations? It should also be remembered that the status quo framework essentially recommends close enough to everything, eventually. It just takes a long time and multiple submissions.
Some might even suggest that the Government and its officials would never support such a reform. They are certainly absolutely right, so long as no one argues for it.
For many, this kind of change feels inconceivable, but that is precisely the institution’s triumph. It has trained us to expect nothing more. It conditions people to accept the unjust status quo and not expect anything better.
What a remarkably successful racket.
This is very simple. In law, patient well-being is not the priority in our system. How can anyone accept this, acquiesce to it, or worse, advocate for it?
Under the putting people first paradigm, sponsors could submit health economic models to the reworked committee, but those models would exist outside the statutory framework. The committee could consider them, but it would not be obliged to do so. Its statutory duty would be to place human impact at the centre.
This hypothetical reverses Australia’s current paradigm. Today, the Pharmaceutical Benefits Advisory Committee (PBAC) is legally required to prioritise the government’s fiscal interests over human considerations. Patient and clinician input is not mentioned in the National Health Act 1953. It sits entirely outside the statutory framework, and its consideration is discretionary. In effect, human experience exists outside the institution’s statutory priorities, not within them.
This explains the extraordinary disconnect that has emerged in cases where overwhelming patient and clinician support has been formally acknowledged and then functionally ignored. These are not isolated outcomes. They are predictable consequences of an institutional design that renders human experience peripheral.
In effect, our HTA institution treats patient perspectives as a competing interest, reflecting its intentional design.
It seeks to turn the complexity of illness, suffering, hope and fear into tidy economic artefacts. Patient and clinician input does not neatly map onto these categories. It cannot be easily standardised or monetised. It is therefore structurally downgraded, not for lack of empathy, but because the institutional architecture offers no place for it.
Some have responded to this structural limitation by trying to transact the lived experience of patients through HTA’s contested economic models.
This effort is well-intentioned but deeply misguided. It is a worrying compromise and submission to institutional authority.
Pushing lived experience through an economic model does not elevate it. It subordinates it further. These models are highly malleable devices shaped by contested assumptions. They are not objective truths.
Attempting to translate lived experience into these frameworks reinforces the institutional logic that marginalised it in the first place. It tells patients that their value must be expressed in the model's language to count at all. Submitting to this status quo only makes it stronger.
Of course, even an advisory committee centred on human experience would eventually privilege its own categories. Yet its bias would favour human beings. Could that produce flawed decisions? Yes, but it would represent a dramatic improvement on the status quo.
