A woman who had her bowel removed while she waited for drugs that would probably have prevented it hopes the Pharmac review will mean others don't suffer the same fate.
Health Minister Andrew Little says Pharmac has committed to making the necessary changes. Photo: RNZ / Angus Dreaver
A major review of the government's drug finding agency has recommended 33 changes including making sure patients have a greater say in its decisions.
Review chair Sue Chetwin opened her report with a story about a young woman who "dragged herself out of bed" to come to a meeting with her.
Her courage had taken Chetwin's breath away and she wanted to make a difference for others like her.
The woman was Crohn's patient Jessica Port who lives with the painful bowel condition Crohn's disease.
She said she and her doctor were denied funding by Pharmac for a drug funded in 35 other countries.
A pharmaceutical company eventually gave it to her on compassionate grounds.
It was making a huge difference, clearing up many of the painful fistulas which are caused by the disease.
But by the time she got it, her bowel was so damaged it had to be removed, she said.
"If I'd had it years ago it may have prevented me having to have a bag forever."
The agency needed to listen more to patients, she said.
"We are constantly in pain, or sick or having surgery and it is unnecessary when there are drugs out there that can make a huge difference," she said.
The new Pharmac review followed on from an initial report that found the agency was too secretive, didn't follow its own processes properly and was failing Māori.
This one made 33 recommendations including writing equity into law, that Pharmac includes people living with diseases in its decision making, that it shares more information and that it makes its processes clearer.
Oncologist and University of Otago lecturer Chris Jackson said successive governments had claimed Pharmac needed to be kept at arms length from politicians and did not need fixing.
After this report, and another one that showed not enough cancer drugs were being funded, no one could deny intervention was needed, he said.
There were many other patients like Port who had become sicker waiting for Pharmac to fund medications, others who had died, he said.
"What we need to see now is action ... we need to see Pharmac adopting those recommendations and seeing genuine movement on engagement, on transparency, on accountability and on improving equity," he said.
Patient advocate and long time Pharmac campaigner Malcolm Mulholland said Pharmac had been too focused on cost and not enough on the outcomes for people.
He hoped the balance would now shift - and wanted to see the agency follow tighter timeframes.
It was great to see the recommendation that patients with rare disorders have a greater involvement in decision making, he said.
"I'd actually like to see patient representation at every level of Pharmac and not just being tokenistic," he said.
Port said she hoped the review would mean real change and she was thinking of patients like her who still needed drugs.
"Based on the past, I don't know how much confidence I have in it, but I am hopeful," she said.
Health Minister Andrew Little said most of the recommendations would be adopted, and those that were not would be addressed by other changes in the health system.