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Kiwi father urges Pharmac to fund expensive drug for SMA treatment

Author
Newstalk ZB ,
Section
Audio,
Publish Date
Wednesday, 1 May 2019, 5:08PM
Both of Gavin Old's daughters have spinal muscular atrophy. (Photo / Supplied)

A petition calling for Pharmac to fund a drug that treats spinal muscular atrophy has been presented to parliament today.

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.

He told Mike Yardley that they had been looking at all options to get their daughters treatment.

"When Australia announced funding last year, we decided to move. 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."

Old says that the drug is funded in Australia for those 18 and under, but are hoping to fund it for adults in the future. 

He is open to moving back home if the drug is funded here, but Old does not think that 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 levied against Pharmac. 

"We are at the bottom of the rankings of the OECD when it comes to funding of new medicine and medicine for rare disease, so we really need to change that."

He says that the drug has had an incredible effect on his daughters. 

"They've been on the treatment for five months, and we're expecting to see gains in the future. 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 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."

 

ON AIR: Heather du Plessis-Allan Drive

4PM - 7PM