A multiple sclerosis sufferer has been gifted an extra month of medicinal cannabis treatment thanks to th e generosity of a young couple from central Otago.
Peter and Ashleigh Brown spent more than a year battling for access to Sativex for their son, Riley, who was born with the rare congenital disorder Zellweger syndrome. Tragically, Riley died in April on the very day he was supposed to begin treatment, meaning they never found out whether it could have relieved his suffering.
Peter, Ashleigh and Riley Brown with Ashleigh’s parents, who paid for Riley’s Sativex medication
Mother Ashleigh says it was a heart-breaking experience.
“It was just so gutting that 14 months of hard work trying to get it for Riley, and then the day he was going to start it was the day that we lost him.”
Since then they’ve had the unused medicine sitting in their fridge at home while they’ve pondered what to do with it. They agreed it didn’t seem right to let it go to waste.
“We could either take it back to the pharmacy for them to destroy it, but $1000 is a lot of money to just put down the drain, or we could pass it on to someone who also has a prescription for it,” says Ms Brown.
That lucky person turned out to be Dr Huhana Hickey, whom they met through charity group MC Awareness, which advocates for people struggling to get access to medicinal cannabis.
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Dr Hickey suffers from constant pain, and has been in a wheelchair for 20 years. She’s one of the few Kiwis who have been granted access to Sativex, but that was only the beginning of a steep uphill battle.
“Getting the approval was easy,” she says. “The difficulty of getting access is how much it costs. It’s $1200 each month, and that’s an awful lot of money just for the average New Zealander.”
Dr Hickey is grateful for the Browns’ generosity.
“I’m coming up now to a point where I can’t afford to buy any more,” she says. “I’ve been buying for four months; that’s $4800 that I’ve forked out in medicine. So this is just going to make a huge difference.”
When asked if she’d consider accessing cannabis on the black market as many other chronic pain sufferers do, Dr Hickey replies that she’d rather not.
“I’ve thought about it, but I have my job. I would lose my credibility if I turned around and went down the illegal road.”
But she won’t rule it out completely.
“It’s tempting. Maybe when I can’t afford it and get to that point I might do that, but for as long as I can I want to stay legal.”
Sativex is the only medicinal cannabis product currently approved for use in New Zealand. It’s not funded by Pharmac, which means those who get a prescription have to cover the cost themselves.
Pharmac has ruled out funding the drug for now, as it says there’s not yet enough clinical evidence to back government investment.
Original article written by Craig Hoyle for Newshub