Pharmaceuticals campaigner moving to Australia after drug she desperately needs for spinal muscular atrophy is only funded for under-18s

This week, Pharmac announced it was looking to fund a second drug to treat the neurological disease spinal muscular atrophy (SMA). 

It's something pharmaceuticals campaigner Fiona Tolich had fought hard for, but she has a problem. Pharmac is only looking to fund the medicines for children, so one of New Zealand's most vocal campaigners for better access to medicines has been forced to leave the country. 

Tolich's children, Ryker and Kaija, are soaking up the lasts moments in their backyard before the family relocations to Australia. It's a move they don't want to make, but know they need to do.

"It's kind of disappointing that we have to move for my mum's treatment," Ryker said.

"I'm excited for my mum but I'm sad I have to leave my friends and my family behind," Kaija added.

Tolich is gutted she has to leave.

"It's cruel," she said.

Tolich led the fight to get our drug-buying agency Pharmac to fund treatment for kids with SMA, which is a progressive neurological condition that affects muscles. 

"I am just relieved that no baby that is born in New Zealand now with SMA will have to go through what so many kids have gone through," she said.

Pharmac is considering funding two drugs that treat the condition, spinraza and risdaplam. The drugs have amazing results.

It took Pharmac five years to get there.

"I will forever feel hurt that it took so long because knowing these kids, I've seen them have feeding tubes inserted that they didn't need, or hip surgery, or spinal rod surgery," Tolich said.

What Tolich hasn't been so vocal about is her own health - she has SMA too. She is still mobile, but her muscles are weak and she needs the drug too.

Pharmac isn't considering funding it for adults, only for those under 18.

"I don't know that I could fight for another half a decade to get access for adults without getting access to treatment myself," Tolich said.

Australia has funded it for adults.

Fiona Tolich.
Fiona Tolich. Photo credit: Newshub.

As she watches her kids pack up their lives, Tolich is frustrated that even after a major review, Pharmac is still not funding the medicines New Zealanders need. 

"There's a smarter way of saving lives and saving money," she said.

Minister of Health Andrew Little wouldn't say whether he thought it was right that people are leaving the country to get the drugs they need.

"What I do know is that the time we've been in Government, Pharmac has funded 200 more treatments, 20 more cancer treatments, treatments like spinraza, like trikafta, and that is reflective of their priorities," he said.

But Tolich wants wider access to drugs.

"Invest at the top, get people access, get people treatment, get people well, and they don't end up in hospitals and they don't end up in morgues," she said.

A parting challenge to politicians to do what's right.