Comment

The transparency discussion is undermined by the fixation on outcomes and the focus on publishing information that realistically adds almost nothing to the community's understanding of how medicines are funded in Australia. This fixation is compounded by a power imbalance that sees all the pressure on the industry when it comes to transparency while 'backroom' processes remain a mysterious locked box.

The industry has and continues to be under significant pressure from policy-makers to allow the publication of section eight of the PBAC meeting agenda - pricing matters - but this is one of the few areas of the system over which the industry holds virtually all the power.

The certainty of change is a key lesson of the past decade but another might be the importance of working to lead that change - this might be less about predicting the future and more about making it happen.

Australia consistently claims PBS decision-making is evidence-based. If so, surely utilisation and spending caps should be based on the actual number of patients fitting within the cost-effective prescribing criteria?? This seems an uncontroversial proposition. 

When it comes to realising these benefits, the trap for industry, clinicians and patients is to advocate for change in the context of Australia's existing and outdated approach to health technology assessment.

The reality is that, based on the Department of Health's response to the FoI on discussant presentations, the industry could rightly argue for the complete abolition of Public Summary Documents and against the release of any information they provide in submissions.

The PBS may have been starved of funds this decade but arguing for more in isolation of wider changes is probably an advocacy dead-end.

Health technology assessment can at times have the characteristics of a 'cult'. The language gives it away because a system has been allowed to evolve in which the extension of human life is consistently devalued with the help of nomenclature like 'value' and 'willingness to pay'.

If Australia was starting from scratch and constructing a system based on today's technologies, would it look like the one we have today?

Decision-making on medicines is now subject to a terrible inequity under which rationed access is masked by ridiculous euphemisms like 'value' and 'affordability'.

One emerging feature of the public and not-so-public policy discussion in advance of the formation of the National Medicines Policy working group is emerging stakeholder alignment that Australia's evaluation processes will need to be reformed for cell and gene therapies.

The Australian research-based industry appears set on being a small target ahead of next year's Budget but what does it risk giving away in the process?