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AUTUMN 2023 InTouch | 19 Continued over ... For Auckland MDA member Fiona Tolich, moving her family to Australia in January was her only option to access a life-changing drug. Fiona, 42, has the rare genetic disorder spinal muscular atrophy (SMA) and has been a leading patient advocate for sufferers in Aotearoa. She has fought for years to get Pharmac to fund the drug Spinraza and even though Pharmac announced late last year that they would fund the medicine for people aged 18 and under from January 2023, Fiona doesn’t qualify due to her age. So now Fiona, a self-described “medical refugee” and her family have made the move across the ditch and are settling in Sydney. Fiona admits she was“late to the SMA party when it came to diagnosis” largely because she had knee issues with recurrent kneecap dislocations that could not be fixed until she was over 18.“I always put my leg weakness down to my knee issues, although YOUR CONDITION IN REVIEW Fiona Tolich has moved to Australia with her family to ensure she can access the drug Spinraza to treat her spinal muscular atrophy (SMA). MDA member, SMA fighter and now a ‘medical refugee’ when I look back now, there were so many other signs that it was bigger than just a knee problem”. It wasn’t until after major knee surgery and the birth of her son Ryker, now 11, that her legs started giving way and she was referred to an orthopaedic surgeon who almost instantly picked up what others for years had not found… it was neurological. Fiona underwent testing through a neurologist including a muscle biopsy and genetic test which confirmed SMA. “It is not however lost on me, the fact that I am so, so lucky to have a milder form of the disease. Half of those diagnosed are type 1 and if I was in the ‘SMA majority’, I would not be here. In fact, I most likely would never have celebrated a second birthday.” says Fiona. While Fiona is fortunate that her general day to day life is not too impacted and that her muscles are currently healthy, being able to access Spinraza in Australia would allow her to maintain her existing quality of life. “There have been hard times when my anxiety creeps in. Times when trying to join in with the family”, Fiona says. There have been moments throughout Fiona’s journey with SMA that made her question the quality of life she had in New Zealand. When her children were younger, Fiona didn’t have the speed to chase them if they took off to reach them ahead of potential danger. “It is like Above: Fiona’s fight all the way to the Human Rights Commission. “It is not however lost on me, the fact that I am so, so lucky to have a milder form of the disease. Half of those diagnosed are type 1 and if I was in the ‘SMA majority’, I would not be here. In fact, I most likely would never have celebrated a second birthday.”