Give my son cannabis
Green MP’s bill would give disabled teenager access to medicinal drug
Jakeb Adams’ seizures violently throw him to the ground — sending him crashing through glass and right off swings. He has broken his nose, dislocated his shoulder and cut his head open countless times. He wears a helmet day and night for protection.
The 14-year-old has epilepsy, autism and the mental age of an 18-month-old. At one point, he was having up to 500 seizures a day.
His mum Melany Adams is desperate to give her son medicinal cannabis.
Jakeb’s and other cases like his are the reason for a bill before Parliament which would allow people with a qualifying medical condition to grow their own cannabis plants and use the drug for therapeutic purposes.
The law reform has the backing of Labour, the Greens and Act. National does not have any specific pro-reform plans and has consistently opposed calls to relax the law around recreational drug use.
Adams, who lives with Jakeb and her four other children in east Auckland, spoke to the Herald in the hope political parties would heed her cry for help.
At one point, Jakeb Adams was having up to 500 seizures a day. The 14-year-old has epilepsy, autism and the mental age of an 18-month-old.
His mum Melany Adams is desperate to give her son medicinal cannabis.
Jakeb’s and other cases like his are the reason for a bill before parliament which would allow people with a qualifying medical condition to grow their own cannabis plants and use the drug for therapeutic purposes.
The law reform has the backing of Labour, the Greens, and Act. National does not have any specific proreform plans and has consistently opposed calls to relax the law around recreational drug use.
Adams, who lives with Jakeb and her four other children in East Auckland, spoke to the Herald in the hope political parties would heed her cry for help.
Jakeb’s seizures violently throw him to the ground — sending him crashing through glass and falling off swings. He has broken his nose, dislocated his shoulder and cut his head open countless times. Now he wears a helmet day and night for protection.
“Mentally he’s about 18 months, but physically he’s 14 years old,” Adams said.
“You’re running after a baby in a big person’s body.
“He is resistant to all the drugs he’s tried. They either make the seizures worse or bring on a different kind of seizure or they change his personality.”
Jakeb has tried 15 medications and had two operations where doctors removed chunks of his brain.
Some of the risks of his medications included being left in a vegetative state and a possibility of blindness. One medication the family chose not to pursue had a risk of death.
“The benzos [a group of drugs used as tranquilisers] basically dampen down brain activity to a vegetative state,” Adams explained.
“By doing that you can stop seizures because the brain is not working but then you have a child who is not having seizures but also not functioning.
“So I don’t think that cannabisbased products are really a big issue
There’s good evidence for using medicinal cannabis when nothing else is working. Dr Graham Gulbransen
for us compared to those.”
Doctors had suggested a third surgery to remove more of Jakeb’s brain, but Adams declined as it would impact his ability to play on a swing and run around, the things he loves doing.
Adams believes a pure cannabinoid (CBD) product could dramatically reduce Jakeb’s symptoms.
Products Adams has looked at have an eye-watering cost of $100,000 a year.
One product, backed by New Zealand charity Medical Cannabis Awareness, is produced by a Canadian company called Tilray.
But while CBD products are available in some countries, patients in New Zealand find themselves in a catch-22 situation.
The Ministry of Health says doctors may prescribe pharmaceutical grade CBD products to patients in New Zealand, but no products have yet been approved that do not contain Tetrahydrocannabinol (THC).
Import restrictions mean it is difficult to source products from other countries. If Adams imported it herself New Zealand Customs would stop the product at the border.
Adams says she has friends in the US who have children with similar conditions to Jakeb who have taken CBD products and their seizures have stopped.
Only 10 non-pharmaceutical grade cannabis-based product applications have been approved in New Zealand since June 2015.
Approval from the Ministry of Health is required before most cannabis-based products can be prescribed. An exception is Sativex for people with multiple sclerosis.
There have been 231 applications approved for Sativex, a half Tetrahydrocannabinol (THC) and half cannabidiol (CBD) product, since it was first allowed in 2008.
But not all of the approvals would have resulted in a prescription and people with multiple sclerosis don’t need approval so they are not included in the figures.
Adams says Sativex wouldn’t work for her son as the THC would exacerbate his risk of psychosis.
Dr Graham Gulbransen, who has worked as an addiction specialist and GP for 30 years, agreed that different cannabis products were needed to treat a range of patients.
He said higher THC quantities benefited those who have issues with their nervous and immune system but could exacerbate problems for those susceptible to mental health issues including psychosis.
“On compassionate and medical grounds there’s good evidence for using medicinal cannabis when nothing else is working.
“I would like a range of pharmaceutical grade products I can reliably prescribe, so if one is not working others can be tried . . . rather than people getting their medicine from drug dealers.”
Medical Cannabis Awareness coordinator Shane Le Brun has advocated for Jakeb to doctors, CBD suppliers and MoH to access the pure CBD product over the last year with no success.
Le Brun’s single greatest hope is Green MP Julie-Anne Genter’s private members bill that was drawn in June. Genter is awaiting the first reading.
The bill would amend the Misuse of Drugs Act to make a specific exemption for any person with a qualifying medical condition to cultivate, possess or use the cannabis plant and/or cannabis products for therapeutic purposes, provided they have the support of a registered medical practitioner.
Genter said it was still too difficult to access medicinal cannabis with the small changes that had been made so far and it was extremely expensive.
“We need to change the law,” she said.“It’s quite urgent and it’s a human rights issue that we stop making people criminals who are using cannabis or cannabis-based products on the black market in New Zealand.”
Through tears, Adams said: “Jake’s never spoken. I would love to hear him speak. He was just a baby when it started so we’ve never seen him grown up. He’s just been a baby his whole life.”