Pressure is mounting on the Government to cut red tape for those who want to access medicinal cannabis.
A group of desperate families are speaking out as they launch a charity to raise money and awareness in the battle for Sativex.
Sativex is the only medicinal cannabis product approved for use in New Zealand. Getting a prescription is notoriously difficult, with just 38 people currently allowed to use the drug.
Charity founder Shane Le Brun wants to cut through the red tape.
"People in genuine pain find it fairly easy to get the likes of morphine or oxycodone from their pain specialists, but to get Sativex is like drawing blood from a stone," he says.
The main function of MC Awareness will be to financially support families who want access to Sativex.
"What we'd like to do is pull together a whole bunch of patients and share their stories together and put it all through a proper charity so the donations are tax-deductible," says Mr Le Brun.
He was prompted to launch the charity after watching his wife's struggles with the medical system. She's lived with constant pain since a slip several years ago left her with two herniated discs.
"It can be like somebody is trying to stab you, or open you up from the back," says Kat Le Brun. "If someone stands on my toe, it feels like my toe's being cut off."
Sally O'Mara fought for more than a year to get Sativex prescribed for her son, Jamie.
A brain haemorrhage at five weeks left him with severe epilepsy, and since then he's gradually lost the ability to walk and talk. He suffers from constant seizures.
His family has tried everything.
"He's had several natural therapies, and in the end three lots of brain surgeries, the last one being a hemispherectomy, which removed half of his brain," says Ms O'Mara.
Jamie was recently approved for Sativex after a year-long battle, and has now received his first few doses.
"He was calm for at least four hours with one spray, both times," says Ms O'Mara. "We're being cautiously optimistic."
Getting a prescription was almost impossible.
"It was very traumatic for us, because he was in a life-threatening situation. And there's nothing like seeing your loved one where they're about to die, and you can't try something that you know is out there and may help."
Mr Le Brun believes a large part of the problem is that many doctors don't know enough about medicinal cannabis, or don't want to be seen as dope enthusiasts.
"There's a bit of a bias in the medical fraternity against prescribing cannabis, so when patients go and ask their specialists or GPs about it quite often they'll get shot down for no real reason," he says.
To that end, MC Awareness also plans to run education programmes for doctors and other medical practitioners.
Mr Le Brun admits it would be easier to ignore the law and source cannabis privately as other defiant patients have done, including former CTU boss Helen Kelly. But he doesn't believe that's a long-term solution.
"We could fix the problem for one person if we just shut up and grew it ourselves, but to actually solve the problem for many people we need to do something other than breaking the law," he says.
Government funding for Sativex is a distant dream, and those who do win the battle for approval then face medical bills that can run to thousands of dollars a month.
Pharmac says there's not enough clinical evidence to back government investment in the drug. Further studies are underway in Australia, but could take several years to complete.
In the meantime, those who want access to the drug are determined to keep fighting.
"When you're in a situation where you're about to lose a child, you'll do anything," says Ms O'Mara, "anything that will help."
That desperation is echoed by Ms Le Brun, who now struggles to pick up or play with her son.
"I just want my life back."