Hard News by Russell Brown

9

A picture of official callousness and detachment

Last night, the New Zealand Herald posted a story from its political reporter Derek Cheng which bundles together a number of current issues around medicinal cannabis. The most alarming is that of Katy Thomas and her epileptic son Eddy, which has recently been taken up by Green MP Chloe Swarbrick. Their story was first reported a couple of weeks ago by TVNZ.

Swarbrick – the only member who seems willing to be caught caring about this stuff – posted her letter to Health minister Andrew Little on Facebook on April 23. I've posted it in turn in the comments below, along with a reply from Andrew Little, the Minister of Health.

The gist is that CBD oil imported from and prescribed by their GP was intercepted at the border twice in a month – and as a result six year-old Eddy's nocturnal seizures are now poorly controlled. This is not only distressing, it's potentially deadly. Any one of those seizures could be fatal.

One oil was apparenty intercepted because of paperwork – the prescription wasn't attached on arrival. I was mystified as to exactly why the other, which was to be delivered to the GP, was confiscated and destroyed. Swarbrick's letter cites Section 2A(1)(b) of the Misuse of Drugs Act, which defines a CBD product. She doesn't actually say the medicines were intercepted because they contain more than 2% CBD, but the two journalists who have reported the story have taken that meaning. But anyway, it's not the case. That's not what the law says.

So they're wrong on a key detail, but not in a way that reflects an iota better on minister Little, the Ministry of Health or New Zealand Customs. What is happening here is an awful picture of official callousness and detachment.

Section 2A doesn't limit the quantity of CBD in a product to 2% (which would be pretty low). It says that "specified substances" – that is, any form (isomer, esther, etc) of THC –  can amount to no more than 2% of the quantity of CBD. The products that have been intercepted did not contain any form of THC. So what actually happened?

I've spoken to Katy and been able to determine that, to an extent.

Since at least 2018, Katy has been importing products from the British company CBD Brothers, a licensed producer of CBD products. Recently, via her prescribing GP, she has been bringing in two products, the Purple Plus Water Soluble and the Red Edition CBD Oil, a full-spectrum oil derived from cannabis indica plants.

According to the WHO, CBD enjoys more evidential backing as a treatment for childhood epilepsy than any other condition, and these ren't dodgy novelty products. Each one comes with a certificate of analysis of the batch from which it is bottled. What happened is not that Batch 68 of the Red Oil contained THC, but that its certificate showed it contained 0.136% CBN, which equated to 3% of the total CBD content. (Ironically, if the oil contained more CBD, there wouldn't have been a problem.)

But CBN, while a cannabinoid, is not THC. In the absence of THC, it is not intoxicating, still less in the trace amount at which it is present in the oil. It's not mentioned on the Ministry of Health page covering the definition of  a CBD product, although Katy told me it is cited on one page I've been unable to find. But, again, it is not THC.

So why single out CBN, when the certificate of analysis shows one or two other innocuous cannabinoids? I wonder if the officials are hanging on these lines in Section 2A specifying:

a substance that has a structure substantially similar to that of any substance described in subparagraphs (i) to (iv);

Where you may find CBN in the real world is in degraded or oxidated cannabis – it's what THC turns into in old weed. That is not the case for the oil in question – and again, it is not THC. If the Ministry of Health believes it is – and this is the ministry that spent years insisting against expert advice that CBD was really THC in drag – then that needs fixing in the regulations.

Little's reply to Swarbrick doesn't address any of this.  Instead, he directs Katy to the only two CBD products that have so far made it through New Zealand's strictest-in-the-world regulations for approved medicinal cannabis products, both from the Canadian company Tilray.

(Last September, the government quietly put a six-month extension on the transitional rules that allowed GPs to import unapproved CBD products in order to prescribe them. Then in March, it extended the transitional scheme for a further six months – because, still, no local producer has been able to meet them.)

Katy has already tried the Tilray products and they are not suitable for Eddy.

"Eddy's particular phenotype is nocturnal seizures, tonic-clonic," she told me. "They are the most difficult to treat. They are the most resistant to anti-epileptic drugs – and they're the most deadly. It also happens that indica CBD works better because it has more sedative properties. But also no one makes it, because it's really hard to harvest CBD from [cannabis] indica plants. There's not a huge concentration in them."

Most CBD oils, including those from hemp, are derived from cannabis sativa. This is why Katy and Eddy's GP have been importing the cannabis indica products from the UK.

"[The Tilray products] don't work for Eddy. Every time we've tried to use sativa strains or isolates, although it does control his seizures, it had adverse effects that almost make the seizures more preferable. They're stimulating – and where Eddy's seizures happen are at the transition between light and deep sleep. So if you give him a stimulant, it's very hard for him to get under and stay under.

"So he's kind popping in and out of those sleep thresholds. And we see more parasomnias – and those parasomnias, if we give him sativa CBD, present as self-harming and screaming fits. Because he has auras, he'll often try to physically run away from his seizures, which when you're quite heavily medicated at night with other things as well as the CBD, is not the time to be running through the hall."

"He just sustains more injuries and he's much harder to control. So those products that we have here are not a safe option for us. They're great for daytime epileptics, they have a place for so many conditions. But not for us unfortunately."

She laughed when I asked her whether anyone at the Ministry of Health had offered to help with what is obviously an extremely distressing situation. Incredibly, she is now facing what looks, at best, like bureaucratic carelessness from New Zealand Customs, in trying to get in a product that has not been deemed unacceptable under the cannabis regulations:

"I received an email to say that I needed to apply for a licence and get my client codes, because the value of the goods that I was bringing into the country were over $1000. Which is completely new to me, because I've been spending more than $1000 on this medicine for years now and I've never required a client code or whatever that process is.

"So I started that on the day that I was asked to. I sent off all my documentation including my ID, then I followed up a couple of days later to see where we were at and they said, oh, we still haven't received it. So I forwarded the same emails again. Over the weekend I got in contact with another customer service agent from UPS and she asked me to send the documentation over again. I spoke to another girl on Monday and she asked me to forward it again.

"Then I just rang Customs and said where are we with this application? Where is the medicine? When is it going to be delivered back to us? And they said, oh, you're going to have to send over the documentation again. So I sent it over again. And then I sad, when is this going to be processed? And they said, two to three business days ..."

This is a mother who is just trying to keep her son happy, healthy and alive.

Happily, CBD Brothers have been more caring and she's been able to talk to the senior analyst at the company, which will now produce an oil for Eddy that will be acceptable to New Zealand officials – either by reducing the quantity of CBN (which she's not keen on, given that CBN may have anticonvulsant properties) or adding more CBD isolate to change the ratios.

"But I guess the issue is that there's no continuity of care for Edward. Every time we make these changes, we don't know if it's going to work – we're just hoping. There's no guarantees and it's actually really dangerous to suddenly change his medicine the way we have been doing."

Eddy's condition is now such that he's been out of school for six weeks. And Katy was scathing about the response from Little to Swarbrick's letter advocating on her behalf.

"We've been told in no uncertain terms that he's not even going to look at it. His reply was so callous and dismissive. It showed a complete disconnect from our lived experience and Eddy's lived experience.

"He really seems to not care in the slightest. Just the fact that he won't even consider any of it. And the idea that we're going to have this thriving local industry that's going to be the panacea to all our problems in September is a joke. Because if it was going to happen in September, then it would've happened in March, or last year.

"And in the meantime, we've still got to get there. And unfortunately, Eddy doesn't meet the definition of palliative even though any single one of his seizures could kill him. So we're not exempt and we just kind of have to go without. There's no urgency. It's not like I'm buying fancy furniture from overseas, or that this is a business product. It's lifesaving medicine. The bureaucratic hurdles we have to jump through are just monstrous."

The ministry may be correct in saying it's just applying the government's rules – albeit according to its own questionable interpretation – but Andrew Little has nowhere to hide on this. This is exactly the kind of case where the minister should be taking an interest, asking questions and looking for a way to help a family that needs helping. He has powers to intervene that he seems simply uninterested in using.

Little seems to have simply disengaged from this and the other issues raised in Swarbrick's letter, such as the prospect of a green fairy amnesty or any widening of the palliative exemption. He needs to be moved on from this part of his portfolio, not only for the sake of Katy and her son, but quite probably for the credibility of New Zealand's medicinal cannabis regime.

"The thing that surprises most people is that they think the law was passed and our problem was solved," Katy said. "But it's gone from bad to worse. It was definitely not improved – it's gone backwards. I actually feel embarrassed for even campaigning for the law in the first place, because it does nothing for us and the patients that we know. It's just a useless piece of legislation."

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