The future of health technology funding for 27 million Australians is being decided via a secret process involving a few primarily unidentified people working together under a framework that denies information on the essential inputs to the proposals under consideration.
The six-member reference committee, which includes the government official with overall responsibility for HTA, is supported by a probity adviser and secretariat. Other people are supporting or contributing to the review. These other mostly unidentified contributors have privileged access to information and discussions denied to every other Australian.
As previously reported by BioPharmaDispatch, representatives of HTA decision-making bodies in other countries met with the reference committee, meaning that these foreign nationals had more access to information on the review than the Australian community. They were at least privy to the discussions.
In short, barely a few dozen people are having secret discussions and formulating options for the future funding of health technologies in Australia.
What has emerged in recent weeks is the chasm between the public presentation of the review's options paper and the increasingly accepted reality.
Medicines Australia publicly 'celebrated' the paper using statements drafted and endorsed before its public release. It had this opportunity because its privileged position meant it had access to the options paper at least several weeks before publication.
Did it decide to 'celebrate' the paper knowing that so many of its proposals would take Australia further down the path of New Zealand's patient-hating Pharmac? Or, did it just not understand the implications?
Its position is confused.
A fundamental conflict quickly emerged between its public celebration of the options paper and its admissions that it contains deeply problematic proposals that the industry could not accept.
Medicines Australia chief executive and review reference committee member Liz der Somer said in a discussion with BioPharmaDispatch on 28 February that she had consistently expressed concerns about some of the proposals.
The concerns were expressed in reference committee meetings. They are not noted in relevant materials or the 175-page options paper. It could be a decision to deliberately conceal this disagreement from the community, which would be a profoundly problematic repudiation of the public interest.
The community has a right to know the substance of these discussions, including the focus of any disagreements.
These are not Cabinet discussions. They do not relate to national security matters. Anything commercial could be easily redacted.
These are discussions about the future arrangements for the funding of health technologies. The public interest could not be more apparent. Yet, we do not even know the organisations that advocated for some of the more egregious proposals. Did any? The public needs to know what body of stakeholder opinion supports these proposals.
Medicines Australia did not raise concerns in its 11-page 2024-25 pre-Budget submission. It was submitted the same day the review options paper was made public. By this time, several of the association's executives had been aware of the proposals in the options paper for at least several weeks.
Far from raising the concerns expressed to the reference committee and during the 28 February interview, the association's pre-Budget submission said, "Medicines Australia supports the HTA Review’s call for bold PBS reform to deliver equitable and timely access for all Australians to new medicines and vaccines, while encouraging the global industry to bring the latest and best medicines to Australia to address unmet patient need."
The association's pre-Budget submission did not mention the pricing and other proposals that concerned stakeholders.
The proposals to accelerate funded access are entirely contingent on other changes that would only take another step towards introducing Australian Pharmac.
Ms de Somer admirably said she would dissent if the review's final report, scheduled to be delivered to the Government in mid-April, included the proposed streamlined pathway for cost-minimisation listings on the condition that sponsors offer a price reduction.
She has highlighted the importance of "consistent opposition and dissent in every consultation" process.
It is a reasonable point. Yet how is this consistent with the association's public celebration of the options paper and briefing to patients in which it described the proposals in favourable terms?
On what basis would patient group representatives dissent in the consultation process, given the briefing they received from the association that claims ownership of the review?
Compare and contrast the controlled and extremely limited consultation process for the HTA Review options paper, which includes an online questionnaire with dropdown menus, and the current town halls being conducted by the panel that oversaw the review of the National Disability Insurance Scheme (NDIS).
The town halls are being promoted to NDIS recipients, many of whom are almost undoubtedly regular users of the PBS. The contrasting approaches are stark.
Most disappointing is the association's refusal to now discuss or fully answer questions that seek simple points of clarity on its contribution to finalising the options paper. It is wrong-headed, to say the least, given it simply concedes any remaining power or authority.
Does the reference committee's non-disclosure agreement prohibit signatories from simply confirming the nature of their input to discussions, or does it reflect a 'bunker' mentality under which telephone calls are not returned and questions are not answered? It could be both, and neither is good for patients.