A Givealittle page has raised $27,000 to fund a Carterton girl's medicinal cannabis.
Sativex is not Government-funded, and at just over $1000 a month it's too expensive for many patients.
For nearly four years, 13-year-old Grace Yeats has been unable to walk and unable to talk. Auto-immune encephalitis has left her with uncontrollable muscle spasms.
"So the spasms have very gradually forced everything, tightened ligaments and set things in concrete really," says Grace's mother, Tracy Yeats.
In November Grace was prescribed Sativex – a cannabis-based spray used on patients with multiple sclerosis. Her mum is amazed how much it's helped.
"She's doing things herself," says Ms Yeats, "like picking things up off the bed and throwing them on the floor, reaching out and touching people's noses."
Grace can now use her iPad to communicate with her mum.
But Sativex isn't cheap. Without a Givealittle page that's covered two years of prescriptions, Ms Yeats couldn't afford it, and that's the case for many patients.
"We know that some applications are being approved but that people aren't filling their prescriptions, and fundamentally that has to be down to cost," says Drug Foundation executive director Ross Bell.
In December last year, 31 patients had Ministry of Health approval to use Sativex, compared to 14 the December before, and only five in December 2013.
But while the numbers are going up, the cost isn't coming down.
Pharmac is still considering clinical advice it received in August that Sativex should not be funded. The advice is there are other funded treatments for the symptoms Sativex is used for and that there's a high risk of "diversion" of the medicine for recreational use.
But the Drug Foundation says the cost is driving people to seek illegal alternatives.
"These families need to get their hands on a product that has been approved, this product they can't afford," says Mr Bell. "So they turn to the black market."
It's something Ms Yeats admits she might have thought about.
She just hopes that by the time Grace's donations run out there will be access to funding.
Tracy Yeats also Featured on Checkpoint with John Campbell
Family struggles to afford medicinal cannabis treatment
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