BCAC recently joined over twenty groups representing New Zealanders with a wide range of diseases to visit Wellington under the Patient Voice Aotearoa (PVA) banner. We met Hon. Dr Ayesha Verrall, Labour’s health spokesperson and former Health Minister, and visited Pharmac to hear Hon. David Seymour, Associate Health Minister (Pharmac) present his Letter of Expectation to Hon. Paula Bennett, Pharmac’s recently appointed Board Chair.
Our collective aim with Dr Verrall was to convey the fact that each disease group suffers from poor access to medicines. We told her that politicians and policy makers need to understand the underlying problems with New Zealand’s medicines system and develop strategic and practical solutions. We spoke of the need for an ongoing relationship in the hope that future Labour policy might address the big issues and our hope that multi-partisan agreement across political parties could enable long-term solutions that wouldn’t be abandoned with future changes of Government.
An issue we raised with all parties was that New Zealand’s medicines budget is the lowest among developed countries, giving us the worst and slowest access to modern medicines. We asked that investment be increased to the OECD average to give all New Zealanders healthier, longer lives. We noted that the recent uplift in Government funding immediately enabled Pharmac to fund more vital medicines, but this merely scratched the surface of the deficit. A bigger budget would be required to address patients’ needs and fund the long list of medicines that Pharmac itself has identified as worthy of investment.
Beyond the ‘fundable’ list are many medicines that are standard practice overseas and could transform lives, but there has been no application to Pharmac. Pharmac does not have a horizon-scanning role and does not actively seek to obtain medicines, but instead passively waits for applications. Their legislative requirement to spend within allocated budget, established in 1993, along with decades of low allocations, has driven a culture of harsh rationing of medicines instead of aspiration to seek the best treatments for our people. Pharmac’s processes for considering and making recommendations on medicines are slow and difficult, often resulting in a negative recommendation, even for medicines funded around the world. This means New Zealanders don’t enjoy the international standard of care for many diseases and results in our exclusion from clinical trials because we don’t have the standard against which an innovative treatment will be compared. Pharmaceutical companies often don’t bother to apply for Pharmac funding because of the low probability of success. Deep reform of the Pharmac model is urgently needed to allow our country to reach international best practice in Health Technology Assessment and medicines access.
At the briefing on Minister Seymour’s Letter of Expectations we were pleased to see the requirement for a professional and respectful culture with greater collaboration and more positive relationships with stakeholders in the health sector, to build trust and achieve better outcomes. The Government’s plans to reform Pharmac’s statutory role and funding model, given the potential fiscal and societal benefits of investing more, could be truly transformative.
The letter notes that Pharmac’s dual roles of assessing the value of medicines and purchasing them is unique. In other countries these functions are performed by different bodies. Patient groups have long believed that Pharmac’s evaluation processes are heavily influenced by these confused roles and lack of funding, driving recommendations to decline effective medicines used globally. We were heartened to see that functional separation of the processes will be considered.
The letter states the need for improved transparency and timeliness in Pharmac’s processes, as concluded in the 2022 Pharmac Review, along with greater involvement of patients, carers, family and patient groups in decision processes. These are elements long sought by patient advocates.
Following the meetings, Malcolm Mulholland and Lisa Burns of PVA stated “We are on the precipice of change. No longer are we trying to tackle the big issues as individual organisations, we have one voice, and are stronger together to drive true and meaningful change. The signals and the messaging we have heard is encouraging. Over the coming months we will need to continue to provide input when it's needed to ensure that the plan that has been laid out for better, faster, timely, and transparent medicines access can be achieved.”
BCAC’s Chair Libby Burgess said “We’re so pleased that our political leaders are listening to the combined patient voice and proposing positive changes to our medicines system that will truly benefit all New Zealanders”.
Read Pharmac's 2024 Letter of Expectations here.
20th July 2024
