A patient advocate says a newly-released investigation shows Pharmac needs a major culture overhaul.
A review of Pharmac found the drug-buying agency secured some of the best prices possible but had contributed to health inequality for Māori and Pacific peoples.
And people with rare disorders faced disproportionately bad health outcomes because of systemic failings, the independent review panel found.
Patient advocate Malcolm Mulholland said people who'd lost loved ones after struggling to secure funding for treatment had been awaiting the release of findings.
"Pharmac's governance has clearly been asleep at the wheel," he said after reading the panel report.
He said the review found Pharmac decision-making had been seriously flawed.
"It leads you to the question: How many lives have been lost because of this?"
Mulholland's wife Wiki was diagnosed with breast cancer in 2018. Drugs were available to extend her life but the best were not publicly funded and she died last November.
The review blasted Pharmac for a lack of transparency, saying the agency at times withheld or redacted information.
Mulholland said it was important now for everybody concerned to ensure Pharmac changed for the better.
The panel made 33 recommendations on issues including Pharmac's accountability, decision-making and responsibilities, cancer medicines and rare disorders.
The review panel said work was needed to improve the lives of people with rare disorders and make it easier for them and their practitioners to get useful information.
It recommended cancer drugs largely be considered in the same ways as other pharmaceuticals, and that equitable access be promoted.
The Government said it accepted the vast majority of recommendations.
Pharmac had a difficult job but must improve transparency and have more empathy for consumers, the review panel found.
And the review found the country's public sector medicines strategy was out of date.
"It does not, for example, account for the emergence of treatments for some cancers or costly biological medicines that are individually targeted to patients with rare disorders."
Investment in cancer medicines had tended to favour urban residents and ethnicities other than Māori and Pacific peoples, the panel added.
The review into Pharmac was announced in March 2021. An interim report was released nine months later.
Health Minister Andrew Little later received the independent review's final report - and Opposition parties said he kept the findings to himself for too long.
The review found all countries faced pressures on pharmaceutical budgets.
It said no matter how much money was spent, increasingly tough decisions had to be made about what drugs taxpayers should fund.
Given that environment, the panel said it was hard to imagine why another system would be more effective than Pharmac's fixed-budget, centralised model.
Little said with Health NZ reforms starting next month, it made sense to reassess Pharmac.
"The panel found Pharmac's model has delivered significant benefits, but to achieve its purpose these benefits need to be shared more equitably across our communities, especially for Māori and Pacific peoples."
Little said he expected the agency to be less cloistered and if Pharmac officials failed to change that culture, health ministers could remove board members.
National Party health spokesman Dr Shane Reti said the report revealed major deficiencies which the Government had failed to fix.
Reti said Little hid the report from the public for months.
He said National previously voiced concerns about Pharmac not achieving savings, and contributing to inequities for Māori.
But Labour created new health bureaucracies rather than address these issues, Reti said.
Act Party health spokeswoman Brooke van Velden said the country should better anticipate how demand for medicines would change in future.
"We need to have a medicines strategy that looks at the horizon of where medicines will go," she said.
"What we have is a fixed budget. Pharmac have to decide where the money goes. We need something in the Ministry of Health saying what we expect to see for the future of medicines, including cancer medicines."
Van Velden said Labour was pressured into commissioning the review.
"They then tried to bury it for months, before finally releasing it today when they probably hoped news of the Prime Minister's meeting with the President would distract from the damning findings."
She said the review found Pharmac staff, rather than clinical experts or people with patient experience, were making decisions about life-saving medicines.
The Breast Cancer Foundation said the review acknowledged many Pharmac failings but was otherwise ineffectual.
"Ultimately, these changes merely tinker at the edges without addressing Pharmac's fundamental problems – its outdated assessment and funding models which aren't keeping pace with modern medicines," chief executive Ah-Leen Rayner said.
She said the result was disappointing for hundreds of women with incurable breast cancer who still could not access 14 life-extending and changing treatments.
"We understand the rationale behind this decision given the demands on Pharmac and the competing priorities it has to balance," the agency's chief executive Dr Diana Sarfati said.
Sarfati said cancer medicines currently had an accelerated pathway for Pharmac consideration.
Former Consumer NZ chief executive Sue Chetwin chaired the review panel.
The panel said Pharmac had to contend with a proliferation of new medicines and pharmaceutical companies.
And it said for now, it made sense for Pharmac to continue as a Crown entity but in future it could be worth reassessing the agency's role.