Brain Tumour Support NZ attends Valuing Life Summit

Brain Tumour Support NZ chair Chris Tse with other health advocates at the Valuing Life Medicines Access Summit

Brain Tumour Support NZ was delighted to join other non-profit organisations and health advocates at the Valuing Life Medicines Access Summit in Wellington on 29-30 April 2024.

Patient Voice Aotearoa chair, Dr Malcolm Mulholland

The two-day meeting was hosted at Parliament’s Grand Hall by the Associate Minister of Health and ACT party leader Hon. David Seymour, and organised by Patient Voice Aotearoa (PVA) and Medicines NZ (MNZ). The aim of the summit was to provide a platform for high level discussions around advancing access to modern medicines for all New Zealanders.

Expertly facilitated by PVA chair Dr Malcolm Mulholland and MNZ chair Todd Krieble, the summit brought together politicians, clinicians, researchers, academics, health economists and patient advocates, as well as representatives from industry, Health NZ, Pharmac, the Cancer Control Agency and others.

New Zealand’s expenditure on medicines as a percentage of GDP lags behind that of other OECD countries, a statistic which confounded international experts attending the summit. Health professionals and advocates from Australia, the Netherlands and the UK, provided valuable insights from their jurisdictions, including possible ways forward for New Zealand’s embattled health sector.

BTSNZ chair Chris Tse was impressed by the generosity and willingness of these experts in sharing their knowledge and experience. “It is clear that New Zealand’s drug funding model has failed to adapt to the fast changing world of pharmaceutical discoveries and is no longer fit for purpose,” he said.

Tse commented that a medicines access strategy should not be developed in a ‘vacuum’ but instead considered as one part of the wider health system, and indeed society in general.

Associate Minister of Health and Minister for Pharmac the Hon. David Seymour

“Access to modern and efficacious medicines impacts all parts of the health system, including hospital operating theatres, inpatient beds, emergency departments, imaging capacity and many others,” he said.

“Indeed, medicines which allow the patient to get back to work or school rather than be incapacitated at home or require ongoing hospital care have huge benefits not only to the patient but their family, workplace and the whole community.”

Tse would like to see a medicines strategy which keeps pace with the fast changing world of drug development and takes into account the impact modern medicines have on both patient and societal wellbeing.

This includes the adoption of innovative health technology assessment (HTA) strategies which drive efficiencies and will result in Kiwis getting access to modern medicines much faster than they are currently.

Tse believes this will require a more collaborative approach between Pharmac and industry than the current adversarial approach. He said this not only negatively impacts the willingness of pharmaceutical companies to register their new drugs in New Zealand but also disincentivises them conducting clinical research here.

“We would love to see Pharmac do everything in their power to bring these modern medicines to New Zealand patients. The current system seems to be working in the opposite direction, serving to restrict or delay access,” said Tse.

“Waiting for a medicine to come off patent before making the decision to fund it is not a good strategy from a patient’s perspective. This strategy often results in premature loss of life and causes widespread suffering and resentment on behalf of the loved ones left behind,” Tse lamented.

“While there is ample opportunity to improve HTA processes, at the end of the day it comes down to funding. If the government continues to inadequately fund the combined pharmaceutical budget (CPB) or Pharmac’s operating costs to the level required, not much is going to change,” he said.

Although Pharmac and the government were prominently featured in the discussions there was no attempt to apportion blame to any party and the overall tone of the meeting was collaborative.

The most powerful presentations at the summit were from Fiona Tolich (patient and advocate, spinal muscular atrophy) and Emma Purchase (caregiver and advocate, bowel cancer). Both women gave heartfelt, personal accounts of how the lack of access to medicines has impacted them and their families.

Brain Tumour Support NZ continues to support the efforts of Patient Voice Aotearoa and other like-minded organisations in lobbying for change.