Kiwi father's emotional plea to Jacinda Ardern to fund lifesaving drug for rare disease

The parents of two young girls diagnosed with a rare disease have urged Prime Minister Jacinda Ardern to fund lifesaving medication, so they can move back to New Zealand.

Belinda and Gavin Old's two daughters Olive and Ivy both have spinal muscular atrophy (SMA). It's a disease that eats away at muscle nerves, and it affects 100 Kiwis.

The medication for SMA is Spinraza - but the drug is not funded in New Zealand. It costs $1 million, per person, per year.

So, the Old's made the decision to move to Australia, where Spinraza is funded, so their girls get the best care possible.

On Monday's episode of The Project, the couple had some harsh words about New Zealand's health care - and an impassioned plea for our Prime Minister.

"We have moved mountains for our daughters and will continue to do so," said Belinda.

 "And we need to make sure the New Zealand health system is on par with what Australia is offering us at the moment."

"It's about giving our girls the best opportunity and at the moment we don't think the New Zealand health system is good enough for our girls," said Gavin.

Gavin says Australia has it right, and we should follow their lead.

"The Australian model is, any treatment or new drug that's being recommended by medical professionals is getting funded, no matter the cost and that's the health system New Zealand should be aspiring to,"

Gavin also had a heartbreaking plea for his old classmate, Prime Minister Jacinda Ardern.

"Jacinda - long-time no speak, it's been a few years. You're doing really well. Everyone saw the potential in you back in school," he said.

"But I ask you to stand up for all the children with SMA in New Zealand, and stop the finger pointing between PHARMAC and the Government and work out how they can get funding for rare disease and new medicine,"

"Please take this on, parent to parent."

Watch the full interview above.



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