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Mum desperate for medicinal cannabis for her sick son

Originally posted on stuff.co.nz

 

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          DAVID WALKER/FAIRFAX NZ  
          Christchurch mum Julie Dixon
          wants access to medicinal
          cannabis for her 27-year-old
          son Matthew.

 

 

The government minister responsible for approving medicinal cannabis says shopping around for a doctor who will apply for it is an option for families.

Associate Minister of Health Peter Dunne has made it clear to GPs and the Medical Association that conservatism about using medicinal cannabis isn’t always in the best interests of their patients.

If a doctor wasn’t open to medicinal cannabis then families had the option of finding another doctor, he said.

“I’m not going to encourage or discourage that because it’s not my role, but it’s an option for them to consider.”

Last week Dunne approved a cannabinoid (CBD), Elixinol, for Nelson teenager Alex Renton, who had been in Wellington Hospital for more than 60 days in an induced coma.

Dunne approved the treatment and within the first 48 hours of receiving the drug Alex had shown signs of progress.

His family’s fight to get doctors to apply to the Ministry of Health has triggered another mother, Julie Dixon, to share her experiences battling for CBD for her son, Matthew.

The Christchurch 27-year-old has suffered from refractory epilepsy since he was aged 3 and has spent much of his life in and out of a hospital.

“We’re desperate,” Dixon said.

Matthew’s seizures are uncontrolled by medication and he too has spent time in hospital in an induced coma.

The Government allows oral treatment of a drug called Sativex, which contains cannabis extracts that include CBD and requires ministerial approval.

When Dunne approved Elixinol for Alex Renton it was the first time that particular product had been approved.

“The last time we visited the specialist we asked about Sativex and the doctor’s response was, why would you want to try that when it hasn’t been proven to work,” Dixon said.

“For us there is an absence of any other treatment options. We are regularly advised there is nothing left.”

Dixon said doctors have never discussed anything outside of conventional treatments with her and it was only when she started doing her own research she came across Sativex and Elixinol.

She and her husband, Kelvin, have written to Dunne asking for approval but without the support of Matthew’s doctor, Dunne is hamstrung by the procedure, which isn’t one he plans to change.

“At the end of the day cannabis oil is just another drug – no different from the powerful drugs being used to keep Alex comatose and the powerful drug that our son Matthew takes every day of his life, which does not control his seizures,” she said.

While Dunne said he had considerable sympathy for the families involved, “I’m not a clinician and I’m not in any position to override the clinical judgment.”

But he is open to broadening access to medicinal cannabis despite Prime Minister John Key saying he wouldn’t support a parliamentary debate on the matter.

“We are watching closely the trials that are being undertaken in Australia. Essentially if they prove to be effective we would obviously seek to take advantage of them in New Zealand.

“But the real issue beyond that is manufacturers being prepared to make those drugs available, in some cases they’re not interested because they don’t see the market as big enough.”

Matthew is cared for at home, a full-time job for his mum, that involves having an oxygen supply and getting up as often as every half an hour in the night as he suffers another seizure.

“In the morning he’s like a washed up rag.”

“As a parent, no matter what the age of your child, you would try anything to improve their quality of life,” she said.

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