From the first day of the 'Valuing Life—Medicines Access Summit' in Wellington, both sides of the Tasman gained some critical insights.
The event, hosted by Medicines New Zealand and Patient Voice Aotearoa, provided an incredibly respectful platform for patients and clinicians. They shared their lived experience of a system exposed as showing them something much less than respect. Their stories were powerful.
Associate Health Minister David Seymour opened the event, welcoming the new Pharmac Chair, The Hon Paula Bennett, and announcing the Government's commitment to addressing the agency's NZ$1.774 billion four-year funding hole.
Mr Seymour was right to criticise the former government for its time-limited 30 per cent increase in Pharmac funding. His presentation of the pending straight-line drop-off was stark.
The question is whether the move to address what Mr Seymour described as Pharmac's immediate 'fiscal cliff' translates into a more meaningful funding increase. It will not be easy in the context of a Government confronting a very challenging fiscal environment.
Mr Seymour also discussed the importance of not politicising pharmaceutical decision-making. This was a curious point. Politicising is a pejorative term. Involving politicians in decision-making enables parliamentary accountability, which means accountability to the community.
Politicians should be involved in important decisions impacting the community. If not, why bother with elections?
Mr Seymour's power over Pharmac is legally limited. He has appointed a new Chair of the organisation, and the Government sets its budget, but it is otherwise independent in making decisions and funding health technologies.
This sets it apart from Australian decision-making, where the Pharmaceutical Benefits Advisory Committee (PBAC) operates under a policy framework imposed by the minister. The repeated claim of PBAC independence is one of the great myths of Australia's health system. The committee does not administer itself or have any budget, and the minister is not bound to accept its advice. Australia's parliament can and has reviewed and even overturned PBS listing and pricing decisions.
The tension this power dichotomy creates is one of the great strengths of Australia's decision-making because it acts as a brake to balance the institution. It is how Australia has avoided the lunacy of New Zealand's Pharmac.
An external observer might suggest Pharmac's lack of direct accountability to New Zealand's community has significantly affected the country's position at the bottom of global medicine access comparisons.
It is also reasonable to argue that a decision-making institution can perfectly balance accountability to the parliament with proper process. New Zealand could look to Australia and virtually every other developed country for evidence.
Politics is critical to good decision-making because how else can the community be assured that decisions can be held accountable to its expectations?
The event's agenda includes a focus on health technology assessment (HTA) from an Australian and an international perspective. New Zealand already uses HTA. The problem is the lack of funding.
It could be argued that the real lesson from New Zealand's nearest neighbour is the importance of decision-making accountability to the community via the parliament and an enduring policy commitment to fund medicines and other health technologies without the constraint of an arbitrarily capped budget.
Mr Seymour was followed by patients and clinicians who shared their stories of living with the consequences of Pharmac's decision-making.
It was a remarkable and uniquely powerful session for those privileged to attend.
It provided essential lessons for Australian attendees, specifically the importance of advocacy based on straight-talking about the lived experiences of patients and clinicians.
The language was unusually straightforward for an Australian audience. It made it incredibly powerful and impossible to ignore.
Fiona Tolich fled to Australia as a 'medical refugee' after being denied access to treatment for Spinal Muscular Atrophy. Her experience was shared generously with the audience, and she outlined her interactions with an institution with no tolerance for criticism. She directly, openly and bravely confronted critical decision-makers in the audience, describing her treatment at the hands of the institution and its officials, including the bullying, public abuse and personal denigration, which ultimately led her and her family to Australia.
Ms Tolich articulated an extraordinarily courageous but frankly disturbing experience. What is the culture of an institution that can so viciously turn on a patient and patients for speaking out?
Her address provided lessons for people working within other institutional frameworks, such as Australia, which also tolerates little direct public criticism.
Advocacy is difficult if the goal is change, not least because it requires advocates to articulate in unequivocal terms why change is needed. In doing so, they need to be protected from the insidious conduct of institutions, which is exactly why parliamentary and political accountability is so important. The system fails when ministers and the parliament fail to exercise their protective powers over the institution.
Ms Tolich and her family paid a significant price, but she has accessed treatment, and her passionate, relentless advocacy is undoubtedly a factor in the momentum for change at Pharmac.
She was followed by Emma Purchase. Ms Purchase shared the devastating experience of her late husband, who passed away in his thirties after a long battle with cancer. She challenged the system that denied contemporary treatment, leading them to charity fundraising.
Five presenting clinicians did not hold back in their challenge to Pharmac decision-making. Each described their experience as treating clinicians in a system that denies them the ability to prescribe the most effective therapies. They described the reluctance of the agency to engage, its dismissal of requests for special consideration of funding on behalf of patients, and even its anger at being confronted with complaints.
One clinician and advocate talked about patients writing directly to Pharmac's staff, highlighting the consequences of the agency's decisions. They were asked to stop and politely refused. Why shouldn't taxpayer-funded officials be informed of the consequences of their decisions?
Some might argue that patients and clinicians in New Zealand have very little to lose compared to counterparts in a country such as Australia that maintains some pretence to funded access in a decent time. Yet access denied is treatment denied for patients regardless of where they live. It should also be remembered that patients in Australia are effectively lectured that their wait for access to treatment benefits the system as a whole, which is a euphemism for saving the Government money. This is the system Health Minister Mark Butler described as 'clunky' and responsible for unnecessary delays and, consequently, deaths.
Mr Butler's critique was a rare example of straight-talking. Australian patients and decision-makers could probably benefit from more such examples.
