Family's desperate quest for cannabis oil
Treatment for a young man in an induced coma for 54 days is being held back because of the politics and bureaucracy around medicinal marijuana, his mother says.
Nelson teen Alex Renton was hospitalised in early April after a serious seizure. He has been in an induced coma in Wellington's intensive care unit since April 8.
Alex remains in 'status epilepticus', a kind of prolonged seizure.
"The seizure has sort of stuck on. They can't get under the receptors with the medication to stop the seizures," his mother Rose Renton said.
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Despite a barrage of tests, the underlying cause remains unknown, although doctors suspect some variety of auto-immune encephalitis. Two attempts to wake him and multiple varieties of anti-epileptic medication have failed to make an impact.
"He's still in seizure, so they cannot wake him, because it's life threatening," Renton said.
Alex has spent 54 days in the induced coma now, his family marking his nineteenth birthday at his bedside. The cooking student had no known pre-existing conditions, appearing healthy except for some flu-like symptoms the week before the seizure.
With a recommendation from one of Alex's neurologists, his family are now keen to try something new - a cannabinoid oil (CBD) extracted from marijuana that international research has endorsed as a treatment for seizures. But accessing the oil, even with the support of a neurologist, has proved nearly impossible.
As Alex is legally an adult, his mother needed to gain authority over Alex's medical decisions. After 36 hours in the Wellington District Court she was granted interim guardianship.
"Luckily, I had an amazing lawyer," she said.
Neurologist Ian Rosemergy endorsed her attempt, writing in a letter that it "should at least be considered".
"We understand that this is outside the normal parameters of the management of status epilepticus however this is the family's wishes and we are happy to support them in this," he said.
Rosemergy said he could not discuss specific patients with the media. In the letter he discussed administering the oil via a nasogastric tube.
Despite the endorsement and the interim guardianship, obtaining the CBD for medical use remains a huge task. New Zealand has no clinical standard for the oil, meaning no hospital will happily administer it. Yet Renton is hopeful an appeal and the medical endorsement will make it possible.
"It's a plant. This isn't about getting stoned, it's about the anti-epileptic properties."
Even getting the oil into the country would require considerable effort.
"It's illegal to produce medicinal cannabis in New Zealand, so you have to do it overseas, but it's at a horrendous price"" said Renton. She was given a quote of US$3000 (NZ$4200) for 100ml of the oil.
"Then getting it through the governmental side and the political side will be almost impossible. [...] There's just so many individuals between, how do I make a difference to that?"
"Families shouldn't have to fight. I shouldn't have to fight to get what Alex needs."
Minister of Health spokesman Peter Abernethy clarified the Government's position.
"Policy over successive governments has been to not support the use of leaf cannabis or cannabis oil for medicinal use," he said.
"This position is supported by there being questions over the standardisation and potencies of natural cannabis, and the availability of pharmaceutical forms of cannabis as approved medicines."
One avenue remains available to Alex's family, but they are wary of taking it.
The Government allows oral treatment of a drug called Sativex, which contains cannabis extracts that include CBD. Ministerial approval is required, and the drug is expensive, but it is legal.
Renton is wary of the higher THC content in Sativex. THC is the intoxicating agent in marijuana.
"He is already so sedated with medical drugs. I don't want him to wake up in that state, but I may have no other choice," Renton said.
"This isn't just about Alex. There are thousands of people who could benefit from medicinal marijuana grown in New Zealand."
The family remains committed to obtaining CBD, setting up a Change.Org petition to pressure the Government, gaining over 400 signatures. A GiveALittle Page has allowed the Nelson community to support the seven-child Renton family as Alex's coma has continued.
- © Fairfax NZ News