‘Medical refugee’ moves to Australia to access life-changing drugs

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Fiona Tolich has moved to Australia with her family to ensure she has access to the drug Spinraza to treat her spinal muscular atrophy (SMA).
Photo: Things / Abigail Dougherty

An Auckland woman who has a rare genetic condition says moving her family to Australia last week was her only option to access a life-changing drug.

Fiona Tolich, 42, has been fighting for years to get Pharmac to fund the drug Spinraza and is a leading advocate for patients with spinal muscular atrophy (SMA) in Aotearoa.

Last month, the agency announced it would fund the drug for people 18 and under starting January 2023, but Tolich is not eligible because of her age.

And now the former Flat Bush resident has made the move to the other side of the ditch and is settling down in Sydney as a self-described “medical refugee”.

Spinal muscular atrophy is a degenerative genetic disease that causes muscle weakness and loss of movement. Sufferers may lose the ability to perform most basic daily tasks as the connection between their nerves and muscles breaks down.

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The mother-of-two was first diagnosed with the condition 12 years ago, when she was pregnant with her son, after experiencing weakness in her legs.

“My muscles are 100 percent healthy right now,” Tolich said. “But what affects the SMA is the messages that go to my muscles and that leads to the atrophy.”

She said access to Spinraza in Australia would allow her to maintain her existing quality of life.

“I still want to be able to play football with my son. If I were in an electric wheelchair, I probably wouldn’t be able to.”

Fiona Tolich photographed at home.

Tolich says access to Spinraza in Australia will allow her to maintain her existing quality of life.
Photo: RNZ / Cole Eastham-Farrelly

Tolich arrived in Sydney last week and has been busy setting up a new family home with her partner and two children.

She said Pharmac should fund the drug for people with the disease so they can enjoy a better quality of life.

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“It essentially helps you keep what you already have for longer and in some cases reverses some of the symptoms,” Tolich said.

“But instead we’re spending money to keep people sick when they should be living more fulfilling lives. It doesn’t make any sense at all.”

She said the decision to sell the family home in Flat Bush and move across the Tasman was not an easy one for her and her partner.

“I’m gutted I had to make this choice, but it had to be made,” Tolich said.

“I’ve had to leave friends and family behind and my kids have been taken out of school,” she said. “But they are young enough to hopefully handle the transition.”

In a statement, Pharmac’s director of operations, Lisa Williams, said last year during her consultation process on Spinraza’s funding that a number of petitioners had pushed for the drug to be provided to all people with SMA, including those over the age of 18.

But she said the agency’s final eligibility criteria for the drug reflected those people who, according to clinical advisors, had the highest unmet health needs and the most potential to benefit from the treatment.

However, Williams did not rule out Spinraza being funded for a larger group of SMA patients in the future.

“The decision we announced in December 2022 does not mean that we will not broaden access to nusinersen (Spinraza) in the future.”

Pharmac declined to answer questions about the plight of people like Tolich, who have had to leave the country to access medicines funded in Australia.

Local democracy reporting is public interest journalism funded through NZ On Air.

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