On Monday, One News reported the case of Warren Edney, who suffers excruciating pain as a result of an aggressive form of multiple sclerosis. His specialist has him prescribed him the cannabis-based medicine Sativex to ease that pain.
Although Sativex has been approved for use by Medsafe, every prescription must be indivdually approved by the Ministry of Health. That approval has been granted.
The problem? Sativex is not funded by Pharmac – and Warren, like any sickness beneficiary, can't afford $1200 a month to buy it for himself. Pharmac is refusing to fund him via its "exceptional circumstances" process on the basis that there is an alternative treatment available. That alternative is to have the muscle relaxant Baclofen injected into his spine.
"Why would you be injecting things into someone's spinal cord when you can get them a mouth spray instead?" says Shane Le Brun, the medical cannabis advocate who brought the story to One News.
Shane, the coordinator of the new charity Medical Cannabis Awareness New Zealand, notes that in the US, Warren's condition is regarded as an explicit case for the prescription of Sativex.
"He needs funding, he's a special case. He's the 1% of MS patients. Even the MS caseworker who referred him to me in the first place had never met anyone like him."
I haven't met Warren, but I have spoken a number of times to Dr Huhana Hickey, who also has MS, about the relief of being able to give up a cocktail of conventional painkillers in favour of the Sativex spray. She is very positive about the efficacy of Sativex – which contains a 50-50 ratio of the two main cannabinoids, THC and CBD – in easing the neurological pain associated with her condition. She describes how it worked for her on the MCANZ website.
Shane is nothing if not pragmatic about what's possible given the cost of Sativex, which is currently the only pharamceutical-grade medical cannabis product approved for use in New Zealand.
"People talk about it getting funded for off-label, for [simple] pain, but that'll never happen. As much as I love medical cannabis, I wouldn't fund it either. A methadone pill for nerve pain is 18.7 cents for a 5mg tablet – versus $300-odd per bottle of Sativex. It's just not a worthwhile investment for pain.
"But for MS, and those rare cases where it's actually saved the life of a young woman with epilepsy, saying there's not enough evidence when the patient is the evidence, I just think it's a kick in the teeth."
For now, MCANZ is aiming to raise money for two purposes. Firstly, to fund medical cannabis treatment for the patients who most need it. Secondly, to facilitate formally accredited training on medical cannabis for medical professionals.
"We want to fund Sativex in the here and now for patients. We just want to help people. We also recognise that our first barrier to access is not what's happening in Wellington, it's the intransigence of the medical community. There's a lot of patients who would qualify for Sativex if they had a different specialist.
"So part of that is that we've got a medical cannabis training package that's accredited in the US against their continuing medical education requirements for doctors. We've emailed around the medical schools here and that can be transferred and recognised for medical training here.
"A doctor has to do 80 hours [of CME] every three years and this package would cover 12 hours of it. It'll just allow them to be more confident about it when talking with the patients. And hopefully it will embolden a few of them to stick their necks out and prescribe Sativex.
"Because the way things are going, if we had 20 products tomorrow, most patients still wouldn't be able to get access, because access is through their GPs and specialists. We've had patients have alcohol suggested to them as an alternative for pain relief."
I began talking to Shane after he began participating in discussions here. He's been quite transparent throughout the formation of the charity and I've been impressed by the attention to detail. He and several others involved in MCANZ had been associated with United in Compassion, a group with similar aims which got buy-in in Wellington policy circles but foundered aimd the messy personal business of its high-profile founder Toni-Marie Matich. Apart from anything else, MCANZ is a registered charity, while Matich never even got that far.
That charitable status makes Shane wary of straying into political activism, but his end goal is "basically what the Drug Fundation has said – we need more medical cannabis products that are Pharmac-funded. That's our end-state as well."
The recent results of a review ordered by Associate Health Minister Peter Dunne into the criteria that guide his approvals of non-pharmaceutical grade medical cannabis products were disappointing. There were two nudges in the right direction: the removal of an onerous and inappropriate guideline that treatment be administered in hospital, and the removal of the word "all" from the guideline that reasonably applicable treatments have been trialled.
The official recommendations of the review include some bitching about patients and their families "who consider that they have a right to access cannabis-based products before the full range of conventional, evidence- based medications are trialled," but the failure to seek any input at all from patients seems extraordinary. The failure to consider palliative care as a special case equally so.
"To be honest, we weren't expecting big changes but asking the same people the same questions six months apart was never going to open the gates," says Shane.
"It was great that they got a bit more involvement from people who are actually out there prescribing medical cannabis, but from our view, it was would be good to get some international medical cannabis experts in there for the next review. Some doctors in the states would dispense more medical cannabis in six months than the entirety of New Zealand has ever had. Basically, to qualify as an expert on prescribing here for the review panel, you've probably prescribed it five or six times."
It is reasonable and understandable for the experts consulted to hold that cannabis-based medicines should be approved in the same way as another medicine. Or rather, it would be if that were the case.
Granted, applicants for non pharmaceutical-grade will soon no longer have to show that every other possible treatment has been tried. But Section 22 of the Misuse of Drugs Regulations requires that every use of a cannabis-based product be subject to ministerial approval. In the case of Sativex, a MedSafe-approved, pharmaceutical-grade medicine, that approval is delegated to ministry officials, but it's still an anamolous requirement.
"Section 22 makes exemptions for Schedule 1 drugs from needing ministerial approval – and there's an exemption for cocaine, opium and morphine. We would like pharmaceutical-grade medical cannabis products, as decided by MedSafe, to be on that list as well.
"Since the 70s, the law has been screwed against cannabis to the point that cocaine is easier to prescribe. And I don't think dentists have been using that for 20-odd years.
"If you say the exemption should be for pharmaceutical-grade, as opposed to medical cannabis products generally, that makes it a bit more politically acceptable. It opens the door for the most respected products and for the products that are likely to come out of Australia. If it's pharmaceutical-grade and it's been approved, people shouldn't have to jump through all these hoops. It should be treated the same as any other medicine. In saying that, we've got plenty of medicines being used for things they haven't been trialled for anyway."
There's an additional wrinkle in the fact that one of the reasons Pharmac's advisory committee advised against the funding of Sativex last year has nothing to do with its efficacy or safety. The committee "considered that the risk of diversion in the New Zealand setting, should Sativex be funded, is high due to the inherent nature of its active substances and the ease of administration."
Equivalent bodies elsewhere in the world have taken a very different view. To deprive someone like Warren of funded treatment on such a basis seems ethically questionable, to put it mildly.
I'm told that the Ministry of Health is preparing a list of non-pharmaceutical grade cannabis products it could consider approving, which would avoid cases like that of Helen Kelly, who applied to use a product whose manufacturers couldn't produce an assay. But for now, the cost of the only approved pharmaceutical-grade product, Sativex, is a roadblock. So what's the solution?
"Grow it here in New Zealand. And to hell with pharmaceutical-quality and getting trials. Just go one step back and go to food grade, where you can guarantee it's safe but you just don't have any pharmaceutical trials to prove its efficacy. That would be an interim step – just get the products first and worry about the trials later.
"There's a mouth spray made with a CO2 extraction process – so there's no solvents involved – and they use a coconut oil as the base. It's just like Sativex and they make in the US for a third of the price. There's no reason we can't do it here in New Zealand."
Shane, an IT professional (and former Army munitions officer) has a personal stake in the issue. – his wife developed a severe chronic pain condition.
"At one point my wife was on nearly 200mg of oxycodone a day, prior to her spinal surgery – which the public system weaseled out of doing and and ACC tried to weasel out of doing. The surgery was a moderate success in that functionally she's a lot better, but she's left with chronic pain, more than likely due to the delays in getting the surgery in the first place. And she's been on every opioid under the sun."
Her pain is being adequately managed now with methadone, but that's not the case for everyone. And it's the people who would benefit most from access to the current, MedSafe-approved medicine – people like Warren – who MCANZ is seeking to help first.
You can help too by donating here. Smaller donations are taken via GiveALittle but MCANZ will also discuss larger donations and requests for donations to be earmarked for a specific purpose.
I'm donating a substantial advertising campaign to MCANZ – it'll start soon, but I wanted to write this post to explain what it's about before launching. I'm also happy to pass on offers of help in kind.
