NZ's first medicinal cannabis charity fundraising for 10 patients to get treatment

Maria Tobin with her son Benjamin, who has epilepsy, and will soon start medical cannabis medication Sativex.
MYTCHALL BRANSGROVE/FAIRFAX NZ

Maria Tobin with her son Benjamin, who has epilepsy, and will soon start medical cannabis medication Sativex.

New Zealand's first medicinal cannabis charity is fundraising to provide patients with the unfunded drugs.

Medical Cannabis Awareness New Zealand (MCANZ) became a registered charity on Friday. Coordinator Shane Le Brun said it had launched a fundraising campaign, initially to fund Sativex for 10 patients.

Sativex is the only approved cannabis derived pharmaceutical available in New Zealand.  The orally administered spray requires ministerial approval before it can be prescribed.

Alex Renton, 19, died in July 2015 after a battle that involved the groundbreaking use of medicinal cannabis.
SUPPLIED

Alex Renton, 19, died in July 2015 after a battle that involved the groundbreaking use of medicinal cannabis.

"Approximately 30 Kiwis now have active prescriptions for Sativex, but MCANZ believes many more New Zealanders could benefit from this medication," Le Brun said.

He said the $1200 per month price tag was "a huge barrier", with individual crowd-funding campaigns often needed to access Sativex

Timaru 27-year-old Benjamin Tobin, who had suffered from epilepsy since he was aged two, is among those hoping to receive funding from MCANZ. 

Helen Kelly who is dying of cancer.
Cameron Burnell/Fairfax NZ

Helen Kelly who is dying of cancer.

His mother, Maria Tobin, said he was currently treated with Epilim and Phenobarbital, as well as several other seizure medications, while living in a full-time care home.

"They affect his mood, his muscle coordination and he has tremors.

"All seizure medications do have their side-effects."

She said she used her savings for the first month's supply of Sativex. She hoped to start treating her son next week.

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"For your children you do anything", she said. 

Ongoing treatment, without funding, would be expensive.

"We are hoping that not only will it help with the seizures, but also that his mood will be a bit more stable.

"We also hope his muscles will relax a bit, and then he will be willing to do a bit more physiotherapy, because it won't hurt as much anymore."

Medical cannabis hit the headlines last year when associate health minister Peter Dunne approved the use of Elixinol for Nelson teenager Alex Renton.

In October 2015, terminally ill CTU president Helen Kelly said she had bought cannabis oil on the black market for pain relief, and it was revealed in March Martin Crowe and Paul Holmes also self-medicated with cannabis, both as an oil and in raw form.

MCANZ also wanted Kiwi medical professionals to be trained through The Medical Cannabis Institute, a US based course provider, and have it count towards their Continued Medical Education (CME) credits, Le Brun said 

"Improving knowledge on medical cannabis would assist the medical profession to use current legal options for prescribing and requesting access to medical cannabis for their patients."

Anaesthetist Paul Wieland, who works for the Southern District Health Board, said training would be useful. He wanted to "make sure I am up to date with the current knowledge" about medical cannabis.

Wieland said medicinal cannabis treatments could be used for treating pain and post-operative nausea. 

There was a burgeoning understanding amongst "the younger generations" in the medical profession, he said, but many feared discussing their knowledge, "mainly because of the stigma that is still surrounding cannabis".

"My colleagues know of my stance about cannabis but many feel, and me included, there is no good research out there because of how difficult it is to do proper studies.

"If you ever wanted to do a proper study, you have to jump through a lot of political hoops to do so, and that can get very expensive."

 

 - Stuff

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