Chance for say on drug funding
The floor will be opened for Palmerston North residents to discuss Pharmac's funding decisions and potentially improve the range of medicines available to those with rare diseases.
The Crown entity, which makes decisions on pharmaceutical products in New Zealand, will host the community consultation at the end of this month in a review of its 20-year-old decision-making criteria.
It will be the last of a nationwide series of forums seeking public input.
Palmerston North resident Wendy Butcher said the forum was an important way for people to understand how Pharmac worked, and raise their concerns.
Her daughter, Natalie, is among a small group of people suffering from life-threatening paroxysmal nocturnal haemoglobinuria (PNH).
Pharmac announced earlier this year it would not fund the PNH drug Soliris, expected to cost about $400,000 per patient per year.
"It's an interesting process for anyone to go and listen to because so many people are unaware of how Pharmac works," Ms Butcher said.
"The fact they don't fund drugs for people with rare disease is effectively a death sentence for a lot of them.
"They need to help us get funding another way. They are the voice for the people who need drugs in New Zealand.
"PNH isn't the only illness that seriously needs funding. There are other groups in New Zealand with rare diseases that are similarly shunned."
Pharmac chief executive Steffan Crausaz said Pharmac had used the current criteria for nearly 20 years and it was essential the service it provided reflected community preferences.
"The decision criteria have served well and are central to our pharmaceutical prioritisation and decision-making. They help us decide which medicines are made available with taxpayer funding."
Mr Crausaz said the forums were a chance for people to understand more about Pharmac and to have a say on its decision-making criteria.
"There may be some additional things people think are important for us to take into account when we are making decisions about pharmaceutical funding," he said.
"As well as recognising the need to regularly refresh such a foundation of what Pharmac does, Pharmac's work has changed and expanded since the decision criteria were first put in place."
The consultation will be held on August 29, from 1pm till 3.30pm, at the Education Centre Hall at Palmerston North Hospital.
- © Fairfax NZ News
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