Maia Schwass, 8, suffers from spinal muscular atrophy. Her mother Tegan Prescott will move Maia and family to Australia to access drugs for SMA not available in New Zealand.
Fundraising to permanently move to Australia with her 8-year-old daughter was one of the hardest decisions Tegan Prescott has made.
But leaving Hawke's Bay, and her son and extended family, is something she needs to do so her daughter can access life changing treatment that isn't funded in New Zealand.
Maia Schwass was diagnosed with Spinal Muscular Atrophy (SMA) type two, a rare disorder resulting in the loss of motor neurons, when she was 2and a half years old after losing muscle mass at 14 months.
She is a bubbly girl who loves painting, swimming, hanging out with her friends and playtime at school, but SMA means she is wheelchair-bound, has to be carried and assisted with day-to-day tasks, can't roll over in bed, has lung issues and has previously been in a drug-induced coma with pneumonia.
A treatment called Spinraza could be life-changing for Maia. In other children it has stopped progression of the disease and allowed them to walk.
But Maia can't access it in New Zealand as it's not funded by Pharmac.
So, the two will be moving to Australia early this year. Prescott's 4-year-old son Phoenix will stay in New Zealand as will Maia's father and extended family. The family is fundraising for the move.
Pharmac says the negotiations for Spinraza are complicated and although it hasn't given up on it, it's also looking at another potentially promising drug for SMA.
Patient Voice Aotearoa trustee Fiona Tolich said New Zealand is one of the only developed countries in the world that doesn't fund Spinraza.
When the treatment isn't funded, neither is anything else needed to administer it.
There is the cost of the treatment, multiple trips to Starship a year, the hospital bed, the anaesthetist, accommodation and other supplies.
"It is too far out of reach for anyone and it would be a full-time job to crowd fund that for life.
Maia Schwass was diagnosed with SMA type two when she was two and a half years old. Photo / Warren Buckland
"The treatment is there with clinicians desperately wanting to give it to their patients but they can't."
"Unfortunately, New Zealand has continued to decline whereas everybody overseas is experiencing amazing gains and they are surviving, but in New Zealand they're not and it's cruel."
She says people shouldn't have to become "medical refugees" or have to put up a Givealittle page every time they have to access a medicine.
"We wouldn't allow a child to die burning in a car but we allow them to die because they've been born with a disease through no fault of their own that is completely treatable."
Prescott said the fact that she can't access treatment in New Zealand is "depressing" and makes her angry and frustrated that they will have to leave family and friends.
"Pretty much the doctors just say to us parents with SMA children that we're just pretty much waiting for your child to die. That's how disgusting it is here. You never want to hear that about your child.
"So, I'm determined to get her up and walking and prove her wrong."
Pharmac director of operations Lisa Williams said Pharmac "works to get the best health outcomes for New Zealanders we can by funding medicines from within the available budget".
"We need to make careful and considered funding choices in the interests of all New Zealanders.
"We have determined that, at this time, we will focus on progressing medicine funding options that are ranked higher than Spinraza.
"We have notified the supplier, Biogen, of our approach and we have advised them that Spinraza remains an option for investment.
"While Pharmac staff can negotiate some of the best prices for medicines in the world, when faced with a pharmaceutical company who is supplying a medicine that has a patent that ends in 2030, such negotiations are extremely challenging.
Williams said another supplier has developed a medicine for SMA called Risdiplam, and Pharmac received a funding application for it in December.
Medsafe is assessing the medicine for marketing approval in New Zealand she said.
When asked how long this process may take, Pharmac said it "can and will move quickly to fund new medicines that show significant health benefits" and the first step is to get clinical experts' advice from clinical committees made up of 140 experts. A timeframe couldn't be given.
Tolich is excited about another supplied coming to the market but said "it is a disgraceful situation that we wait for medicines to come off patent before offering effective treatment to desperately ill Kiwis".
As SMA is a motor neuron disease "every day counts" and every day waiting without treatment "is potential for more loss".
Tegan says SMA has affected every part of her and Maia's lives. Photo / Warren Buckland
If in the future, treatment is funded in New Zealand, Prescott says she would "love" to be able to come back so Maia can be raised with her brother and be able to see her father and extended family.
"I think most Kiwis with SMA children would come home if the Spinraza or something similar came here."
The family is fundraising to help with the costs of moving countries including flights, accommodation, living expenses and transport costs including the about-$8000 cost of getting Maia's specially made wheelchair van to Australia.
A Go Fund Me page titled "Maia's Mission to Walk" has been created.
Maia's father has also organised a Karma Keg with live music and raffles at The Filter Room on January 22 from 4pm where people can buy a beer for a minimum of $5 to fundraise.
Depending on fundraising, the mother and daughter are looking at moving in March.
Maia said moving to Australia is very exciting but a little sad. She's a bit nervous that the injections in her spine will hurt, but she also really wants to visit Australia Zoo.
