NZ advocate calls Australia home

By Megan Brodie 8 months ago | In New Zealand, People
  • 8 months ago
New Zealand patient activist Fiona Tolich

16 August 2023

“I don’t have a sense of trust that if something else came along it would be funded,” says Fiona Tolich, one of New Zealand’s most vocal and effective patient advocates. “I feel a strong sense of anger and pain about how hard and how publicly you have to fight when you are already vulnerable.”

Fiona emigrated to Australia in January after spending almost five years fighting for children born with Spinal Muscular Atrophy (SMA) to get funded access to Biogen’s SPINRAZA (nusinersen) through Pharmac. While she was ultimately successful, Fiona says she didn’t have the energy or the trust to turn around and fight for adults like herself born with SMA because she didn’t believe Pharmac would care enough to listen a second time.

The Tolich family made the move over the ditch so Fiona could get PBS-access to Spinraza, and already she’s thrilled with the result. All her indicators are improving and Fiona says she now feels such a strong affinity with the country that has provided her with access to a medicine that makes such a difference in her life, she will be happily barracking for the Matildas in tonight’s World Cup soccer match.

NZ patient advocate Fiona Tolich in Adelaide.

But she is not the only Kiwi having to make the heartbreaking decision to leave New Zealand and emigrate to Australia to gain access to innovative medicines, a story running in the Waikato Times on Monday telling of a young police officer diagnosed with multiple myeloma who has been told he should also consider emigrating in order to access the drugs he needs.

“These drugs are not new; they’ve been in existence for some time,” Sergeant Will Hamilton says. “Daratumumab (Darzalex) was approved for use in the US in 2014, so it’s not new stuff. We really need Pharmac to lift their game and get things through a little bit quicker.”

It’s a familiar story, Australia providing a necessary lifeline because New Zealand patients are born in a first-world country of five million people that invests just $400 million a year in medicines while Australia has a population of 25 million but invests 40 times more than New Zealand.

“What is wrong with a country where the doctor’s default is having to recommend that someone buy a plane ticket as opposed to going to their pharmacy and getting what they need; something that the rest of the developed world has access to,” Fiona said.

“When you are at your most vulnerable, when you’ve been diagnosed with something pretty horrific, it’s pretty sad that rather than writing a script, your clinician is telling you to see a travel agent.”

While leaving friends and family was difficult, Fiona says she fears for those left behind likening them to soldiers left in the trenches.

Having just been released from hospital after suffering a life-threatening medical emergency (not related to SMA), Fiona was reminded both of how far she was from her loved ones, and the importance of having access to effective medicines.

“I’ve literally just got out of hospital and I don’t have any family around, so my mum flew in,” she said. “All of this stuff happens when you’re away from your hub, from the heart and soul of who you are, but I don’t regret coming.

Fiona Tolich and her family have emigrated to Australia.

“I have paid taxes my whole life, I’m raising good kids and they’re doing well. We used to say we always had to beat the Aussies, but now I’ve got such a strong sense of allegiance with Australia because it has done more for me in seven months than New Zealand did since I was diagnosed at 30.”

For this mum, the future is now all about “making sure I can still do what I need to do to be a mum to my kids”.

“I want to be able to walk across a sports field, whether it’s muddy or not, and watch them play,” she says.

“New Zealand has got some amazing clinicians, but I do not trust that if they needed to prescribe something, they could get it. If I got an injury, I would’ve been well looked after in New Zealand but because it’s an illness, they’re like, oh you can deal with that yourself.

“New Zealand is no longer the place for me. Australia is absolutely home now and I’m excited for the future.”

©MedNews 2023

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