Drug-buying agency Pharmac will today publicly discuss its plan to open a $5 million fund for rare disorder medicines.
It comes after years of lobbying, but the rare disorder community says it's barely a drop in the bucket.
In January, Samantha Lenik found out she has Pompe disease, a condition that leads to muscle degeneration and eventually death.
"Maybe 10 to 15 years without treatment, and that obviously frightens me," she says. "I want to be here to see my children finish school, I want to be here to see my children get married."
She's one of just nine people in this country with the disease. Treatment to stabilise her condition exists but at a cost of up to $500,000 a year, so meant Ms Lenik was told not to bother asking Pharmac to fund the treatment.
But now there may be hope.
"We are hopeful on behalf of New Zealanders with rare diseases we'll be able to get prices down," says Pharmac chief executive Steffan Crausaz.
"That will mean that we'll be able to give much more access than we're currently able to do."
Pharmac wants to set up a $5 million fund for rare disorder medicines. The plan is to put suppliers in competition with each other to lower the prices.
The Organisation for Rare Disorders has been campaigning for 10 years to get better treatment through Pharmac.
"It's good news that they've listened to the arguments we've put to them," says executive director John Forman. "The amount of money is a problem though. We estimate that $20 to $25 million a year is needed."
Funding arguments aside, Ms Lenik is increasingly finding it difficult to walk and only has one wish.
"I know that the enzyme replacement therapy is not a cure, but it definitely halts symptoms and I want a chance to be able to use this treatment so that I can stay as I am."
And her children want mum to stay as she is too.
source: newshub archive