An 11-year-old girl has had two parts of her brain cut out and is on a cocktail of pharmaceuticals, yet she can't access a medicine that could stop her seizures, because it's derived from cannabis.
Niamh Wrintmore has a rare condition called infantile spasms. She started having seizures as a four month old baby, and they haven’t stopped. When Niamh has seizures she screams, and every time this happens it causes further damage to her brain. When her mum Melanie and I speak, Niamh screams non-stop for 20 minutes.
Now 11 years old, Niamh is on a cocktail of pharmaceuticals and has had two surgeries to cut out parts of her brain. Yet the possibility of trying CBD, a cannabis derivative that has the potential to help reduce or even stop her seizures, is out of the question.
There are more than 100 different chemicals in cannabis. The main psychoactive constituent is THC (that’s delta 9-tetrahydrocannabinol, aka the thing that makes you high). Another is CBD (cannabidiol) - which is non-intoxicating, meaning it has little psychoactive effect. Sativex is the only CBD medicine approved for use in New Zealand, but it also contains THC, and is extremely expensive.
Research suggests CBD could have several therapeutic applications - including neuroprotective (it’s good for your brain), anti-inflammatory, anti-psychotic, anti-anxiety and pain killing effects, though more clinical trials are needed.
There is also the possibility that it can help reduce seizures or even help children become seizure-free which, for Niamh and her mum, could be a godsend.
In Australia, CBD has recently been scheduled as a prescription-only medicine, as long as it contains a total cannabinoid content of 2 percent or less. A clinical trial in New South Wales is studying the use of pharmaceutical grade CBD product Epidiolex to provide relief for children with severe epilepsy.
But in New Zealand, the Ministry of Health considers CBD to be covered by the Misuse of Drugs Act, because its molecular formula is the same as that of THC, making it a class B1 controlled drug. The ministry has ordered Customs to seize any products containing the substance at the border, and those wanting to use it medicinally need Associate Health Minister Peter Dunne’s permission.
The Ministry has concerns that people could “easily” convert CBD into THC (by boiling it in 0.05 percent hydrochloric acid in ethanol). But the Expert Advisory Committee on Drugs (or EACD, which provides advice to the Minister of Health on drug classification issues) has pointed out that CBD-based medicines would be expensive and hard to access (as a prescription-only medicine) - more so than simply buying cannabis off the street.
Nelson lawyer Sue Grey, who advocates for patients wanting access to medicinal cannabis, says the ministry’s interpretation of the Misuse of Drugs Act as covering CBD is wrong, and so does ESR - the Government’s scientific research institute. “[CBD] should be considered a prescription medicine under the Medicine Regulations 1984,” a discussion document submitted to the Ministry by ESR in February last year reads.
One of the greatest ironies of the debate over access to CBD is that hemp seed oil, which is potentially high in the chemical, has been available to buy as a food in New Zealand since 2002. Hemp is also commercially grown here, but must have a THC level of no more than 0.5 percent. But there seems to be no limit on the CBD content. And strains of cannabis developed for hemp fibre and/or hemp seed production generally contain high levels of CBD. (Though New Zealand company New Hemisphere says their hemp seed oil contains no CBD).
Nelson woman Rose Renton is all too familiar with the ironies of the CBD debate. In July 2015 her son Alex died, after being admitted to hospital with a prolonged seizure in April. His death came less than a month after Dunne approved the one-off use of CBD based drug Elixinol.
“I know if he had access to CBD earlier it would have helped Alex,” Rose says. “We have our Government scientists saying it should be available, why is the Ministry not listening, and how long is it going to take?”
Niamh’s mum Melanie finds this frustrating too. If there’s a naturally derived medicine with no apparent side effects that could potentially help her daughter, she wants to try it.
Each time Niamh takes a new pharmaceutical, no one knows how she will react. Melanie says some side-effects are dreadful. One of the worst is insomnia, which she says leads to more seizures.
She wants Niamh to be able to try CBD. She’s heard of children with infantile spasms having success with it - some kids becoming able to communicate as a result.
When Niamh was three, half of her right frontal lobe was removed. It didn’t stop her seizures.
In September last year, surgeons cut out another section of her brain - this time in the parietal lobe.
Niamh’s memory is affected with each seizure and Melanie says it’s heartbreaking.
For short periods of time - a few weeks, or a month - after a surgery or new medication, Niamh “clears,” meaning no seizures, and the ability to communicate.
“You get this glimpse of your child,” Melanie says. But it doesn’t last.
After Niamh’s first surgery, at age three, Melanie remembers seeing the look in her eyes when she recovered.
“It was like she was seeing me for the first time, and then I had to slowly watch it go again.”
Melanie says Niamh has tried every drug available in an attempt to minimise her seizures, but nothing works.
“It’s exhausting. We do as much as we can. Everything they offer us we do it.
“I don’t want Niamh to be really clever. I just want her to be in the world, and be able to communicate with people.”
But as desperate as she is for her daughter to try CBD, Melanie wants to do it right.
She doesn’t want to give Niamh a substance that’s not controlled or tested on - not because she’s worried about the law - but because she’ll have no idea how strong it is or what exactly is in it.
“If someone could say, ‘this has been done in a lab, here’s the chemical,’ I’d do it in a heartbeat. I like science. I want to know exactly what she’s getting.”
That’s where Shane Le Brun, head of Medical Cannabis Awareness New Zealand (MCANZ) comes in.
Shane, a former soldier and current IT guy, says he wasn’t the type to advocate for the use of cannabis until a back injury left his wife in chronic pain.
“She’s been through all the opioids and all the regular narcotic pain killers.”
He became interested in the use of standardised medical cannabis products as an alternative to “harder pain medications,”
“As a former soldier, protesting and smoking up outside the police station wasn’t my idea of pushing for change.”
So in February last year he established the registered charity.
MCANZ advocates for access to medicinal cannabis for patients like Niamh who have exhausted all other options, under special guidelines set out by the Ministry of Health. So far, they’ve had three approvals cross the line. This is done on an individual basis and the application process can take up to six months.
The charity compiles data and research on the medication they’re lobbying for before submitting it to a patient’s specialist. The specialist will then discuss the medication with their peers. If they approve, they will apply to the Ministry for the drug’s approval.
“The application can hang around the Ministry for a few weeks before it gets a recommendation letter and is bounced to the Minister himself,” Shane says.
Once an application is signed off by Dunne, the Ministry has to issue an import licence to the specialist who applied. In the case of a Canadian product that was successfully approved in October 2016, the original copy of the import licence had to be sent to the company so that it could attach it as an annex to its request to the Canadian ministry to get an export licence.
From there the drug was sent to a New Zealand pharmacy.
“We’ve really got our work cut out for us as a charity to push through - for some really high-needs patients - some better products.”
It’s a lot of hoops to jump through - and Shane says it’d be a lot easier if the Ministry simply descheduled CBD from the Misuse of Drugs Act, making it a prescription-only medicine instead (and meaning access to the drug would no longer need ministerial approval).
CBD still wouldn’t be easy to get, but Shane thinks it would shave about two months off the time it currently takes.
Some of the stigma would go too, he says.
Dr Keith Bedford agrees. In fact, the former chief forensic advisor for ESR thinks the stigma surrounding the debate on the use of medicinal cannabis is so great, he prefers not to use the word cannabis at all.
“CBD is but one of the constituents of cannabis. To use an analogy, codeine is found in the opium poppy (along with morphine and other opiate alkaloids) but we do not refer to someone using codeine as using ‘medicinal opium’,” he wrote to the EACD.
“There needs to be a clear, mutual understanding of the meaning intended by use of the phrase ‘medicinal cannabis’, but preferably it should not be used at all as its definition is too broad and not well accepted.”
The Ministry is awaiting advice on whether or not to change its stance, but in the meantime people like Niamh are suffering.
“I think CBD should be a first line treatment, rather than going straight to pharmaceutical drugs and surgery,” Melanie says.
“But people have a prejudice about the fact that it’s a cannabinoid. It’s become political and it shouldn’t be - it makes me mad.”