Pharmac review: Patient advocates question plan to tackle entrenched inequity

Patient advocates say the devil is in the detail when it comes to exactly how Pharmac will address issues of inequity.

A report into Pharmac found it had likely contributed to inequitable health outcomes for Māori, Pacific people, and people with rare disorders.

Minister of Health Andrew Little said the drug buying agency would now be bound by law to put equity at the forefront, through the Pae Ora (Healthy Futures) Bill.

"We needed to have a clear, explicit statutory framework for achieving equity, both under the Treaty and equity reasons anyway. That's now in that bill, and hopefully we'll get that through Parliament in the next few weeks, and they will be bound by those," Little said.

But Rare Disorders New Zealand chief executive Lisa Foster said the language of the bill may need to be made more explicit.

"Equity, when it is mentioned, I don't see rare disorders being added into that conversation despite the substantial evidence proposed in this review," she said.

The independent review found systemic failings were causing people with rare disorders to have disproportionately negative health outcomes.

It was vital Pharmac took on board the voices of those with lived experience, like patients and advocates, Foster said.

"The rest of the world is discussing things around having patient inclusion or consumer inclusion all the way through drug development, they see it as a vital component for equity and also for effective development of the right drugs at the right time."

Clinicians should also be involved, she said.

"If you're looking at specific specialty or area of need, you would need the right specialists in the room."

Patient Voice Aotearoa chairperson Malcolm Mulholland told Checkpoint he also wanted to see how the entrenched equity would work.

"The devil's in the detail on that one, and I'm not sure how that will play out.

"My big fear is it's used as a rationing tool, where the real issue is about the lack of funding so Pharmac is not put in the position where they have to choose one condition over the other."

The review came to the damning conclusion that Pharmac was adding to the inequities in the health system. While it acknowledged it was delivering significant benefits, the benefits were not equitable.

Māori were more likely to die from cancer than other population groups, but the funding of cancer treatments had not acknowledged that.

Little said "knowing there are some cancers where there is a higher incidence in Māori, lung cancer is one of them, the way they made their decisions didn't really take that into account. And so that's what needs to change".

The report said Pharmac's strategy had become out of date, failing to take into account emerging cancer treatments, or more costly medicines that target patients with rare disorders.

"We wanted Pharmac to really hone up its skills on procurement, get the best deals possible. I think thirty years on that's translated into 'the only strategy to good health outcomes is getting the cheapest possible drugs,'" Little said.

Mulholland said the report showed Pharmac's governance was "asleep at the wheel".

"It's very clear Pharmac is a broken model, a broken system, and change needs to happen for the benefit of New Zealanders."

The panel recommended the Ministry of Health developed an updated medicines strategy, and consulted stakeholders. It also recommended cancer medicines be considered in the same way other medicines were.

Cancer Control Agency chief executive Dr Diana Sarfati said "we understand the rationale behind this decision given the demands on Pharmac and the competing priorities it has to balance".

The new Māori Health Authority would now play a critical role in making sure Pharmac makes more equitable decisions for Māori.

But National's Dr Shane Reti believed the health reforms could make Pharmac's integration harder.

"We believe a Māori Health Directorate with clear targets and clear accountability will be a way to bring Pharmac closer into the fold," he told media on Wednesday.

"We also think part of the problem with Pharmac is it's been left somewhat isolated out on the limb, that oversight hasn't occurred. This report does talk a bit to that, but we would bring it much closer to us and make ourselves accountable for Pharmac."

The review also criticised Pharmac for a lack of transparency.

Reinforcing that criticism, on Tuesday Pharmac refused to be interviewed.

Instead, it sent a statement attributable to its chief executive Sarah Fitt.

"Pharmac welcomes the review final report and the government's response. There are important improvements for us to make and we look forward to working with other health agencies on implementing the recommendations supported by the government," the statement said.

ACT leader David Seymour said Pharmac needed to front up.

"It's a fortress mentality, more focused on the organisation itself than the needs of all those patients suffering, who deserve answers."

Little said if Pharmac failed to change its culture around transparency, he had the option of removing board members.

Not all of the report's 33 recommendations would be adopted by the government.

Some were already being worked on, through changes to the wider health system, Little said.

"The days of the Independent Republic of Pharmac are over. Pharmac is part of our health administration, and needs to be working appropriately with the rest of the health administration," he said.