Highly confidential meetings where Pharmac ranks the funding priority of potentially life-saving medicines are open to all staff and attended by junior workers, including executive assistants, payroll staff and graduates.
Senior clinicians have told RNZ they are staggered that such a vital meeting in Pharmac's process is attended by back-office staff with no medical experience.
Pharmac holds prioritisation meetings every three months to decide which medicines will go on its priority list and what ranking they should have in relation to other medicines it wants to fund.
In response to an Official Information Act request, Pharmac has revealed the commercially sensitive meetings are open to all of its 145 staff.
While even junior staff attend prioritisation meetings, chief executive Sarah Fitt went to just two of the 12 prioritisation meetings between March 2019 and June 2021, and attended part of a third meeting.
Dr Richard Gearry, a consultant gastroenterologist at Canterbury District Health Board whose attempts to get funding for medicines urgently needed for Inflammatory Bowel Disease last year left him critical of Pharmac's decision making, described the agency's process as bizarre.
"To be just opening this to all is really, really astounding," he said.
"People who have got roles that are more administrative within an organisation aren't really able to give the expert advice that you need. I really worry about the decisions coming out of that."
Leading oncologist Chris Jackson said even he wouldn't claim to understand the nuances of all the different types of cancer treatments.
"So I don't understand at all that a general staff member could possibly be across the level of detail required to weigh one application against another and I think that is quite inappropriate."
He said the process undermined the notion Pharmac was an expert-led organisation.
"Pharmac are asking their staff which drugs should be funded. They're not actually asking the medical community which drugs should be funded."
The information was released to Fiona Tolich of Patient Voice Aotearoa, who has been advocating for Pharmac to fund Spinraza for about 35 children with the deadly muscle-wasting disease Spinal Muscular Atrophy (SMA).
"I couldn't believe that life or death decisions were being made by people who weren't educated in an appropriate field to be making those decisions," Tolich said.
"I never in my wildest dreams thought that the last hurdle for the kids with SMA was a 'popularity, hands up who wants to find this one versus that one' meeting."
The priority ranking for medicines is one of Pharmac's most treasured secrets as it gives the agency leverage in negotiating prices with drug companies.
"Prioritisation meetings are highly confidential due to the commercially sensitive nature of information discussed at the meetings," Pharmac said in its response to Tolich.
On its website Pharmac says "experts and advisors" attend the prioritisation meetings, even though all staff are invited.
Pharmac's director of operations Lisa Williams said a core group always attended, including health economists and medical specialists, but all staff could go.
"Part of the theory sitting behind that is this concept of 1000 minds - that the more people that you can get involved in assessment and decision-making, you get a better diversity of thought."
Pharmac had invited all staff to the meetings since it was established in 1993 and had eight employees. It now has 145 staff and usually between 40 and 60 attended the prioritisation meetings, she said.
Sensitive information had never leaked out and the payroll, admin staff, executive assistants and graduates had at times provided valuable insight, Williams said.
"We have had extremely valuable contributions from people in roles like that," she said. "They are probably more representative of average New Zealanders - who are in a room trying to work out what New Zealanders would like."
But Gearry, also a University of Otago professor of medicine, said it was ridiculous to suggest those workers could give a neutral and balanced perspective.
"When you have staff members of an organisation who are being asked for opinions that are outside their remit, or area of expertise, they've got huge conflicts of interests. They are employed by Lisa and the other executives that are there and yet they're being asked to make decisions on things and being asked to give opinions - that, I think, is really unfair."
Tolich said Pharmac would be better off asking people who had medical conditions and were waiting for drugs to be funded.
"If you really want perspective and really want to understand what it might be like from someone who isn't clinically trained, or economically trained, ask the people that are living and breathing this every single day."
Williams said Pharmac's expert committees did a lot of work assessing medicines before the prioritisation meetings and the final decisions as to what would be funded did not occur at those meetings.
The ultimate decision makers were the board and the chief executive, which was why Sarah Fitt didn't usually attend the meetings, she said.
"You want to be as independent and objective as you can when a proposal gets put to you for a decision."
Williams attended three of the last 12 meetings and when she did it was "more in an observer capacity as opposed to an active participant," she said.
Gearry, who has been highly critical of Pharmac's decision not to fund any new drugs for Inflammatory Bowel Disease since 2011, said the agency's approach lacked transparency and often produced random outcomes.
"It's a bit like a chocolate wheel at the fair, isn't it? It feels as though someone spins it and someone gets funded and someone else doesn't and the reasons behind those decisions are very opaque."
Pharmac, which has a budget of more than $1 billion and funds about 1000 medicines for 3.7 million people, is currently under review by an independent panel appointed by the government.
Tolich said the way it ran prioritisation meetings should be looked at by the panel, which is expected to deliver an interim report to the government this month and a final report in December.
RNZ
