A family have moved to Australia in order to get their daughters the treatment they need.
It comes as a petition calling for Pharmac to fund a drug that treats spinal muscular atrophy (SMA) was presented to Parliament yesterday.
The petition signatories want Pharmac funding for Spinraza, the only drug that can slow the effects of SMA and which can cost as much as $1 million a year.
Gavin Old has two daughters with SMA and his family has had to move to Australia in order to access Spinraza.
They had been looking at all options to get their daughters treatment, he told Newstalk ZB's Mike Yardley yesterday.
"When Australia announced funding last year, we decided to move," he said. "Unfortunately, it is unable to fund it individually, and we had both of our daughters with the condition, so it was definitely outside of our financial reach."
The drug is funded in Australia for those 18 and under, Old said, but is hoping to fund it for adults in the future.
He is open to moving back home if the drug is funded here, but Old thinks Pharmac's funding of rare diseases and new medicines simply does not work.
"Until that problem is fixed, we would not be looking to move back."
Old would "very much" like to see the Government respond to the criticism that has been levelled against Pharmac.
"We are at the bottom of the rankings when it comes to the OECD in terms of funding new medicines and medicine for rare disease, so we really need to change that, we need to put some money aside to fund these new technological breakthroughs."
The drug has had an incredible effect on his daughters, he said.
"They've been on the treatment for five months, and we're expecting to see gains in the future, but 48 hours after [my daughter] Ivy received treatment, she was walking four to five steps between furniture. She's now up to 200 steps, she can spend up to an hour on a walking frame."
His youngest daughter, Olive, can now spend 95 per cent of her time on her feet walking around, which she could never do before receiving the drug.
"We're really happy and fortunate with the drug."
Spinraza is the only FDA-approved treatment for SMA sufferers. It isn't a cure, but has been proven to slow or stop the effects of the disease."
Spinal Muscular Atrophy is a genetic disease affecting the parts of the nervous system that controls voluntary muscle movement. SMA involves the loss of nerve cells in the spinal cord and is classified as a motor neuron disease.