Chris Fowlie on The Daily Blog: Compassionate approach plants seed for medical cannabis

As Helen Kelly said, “Why should parents who have got kids who are having seizures, who think this might work – even their doctor is saying might work – be forced to go on the criminal drug market to get medicine for their children? I don’t want to buy cannabis oil made on the black market where it could have properties that I don’t know about. I can’t see how strong it is or how weak it is, or what its components are. I’d like to be able to buy it properly prepared and legally use it.”

The latest issue of National Geographic that arrived in my mail box today hails cannabis as a medicinal “treasure chest” that may help cure or alleviate a wide array of everyday maladies as well as serious and life threatening condition. Cannabis has a remarkably low toxicity on a par with aspirin or paracetamol. But while those relatively benign pills are available at supermarkets and corner stores, patients who find better relieve using cannabis must somehow grow their own or buy from organised crime or hope for donations from good Samaritans.

That’s why NORML NZ has campaigned for safe legal access to medicinal cannabis since we formed in 1980. Opinion polls now regularly put support at over 80 per cent – a RadioLive poll this week had 88% saying yes to allowing medicinal cannabis and with a further 9% wanting it decriminalised instead, only 4% supported the current uncompassionate approach.

Earlier this year NORML met and wrote to Associate Health Minister Peter Dunne seeking ways to make progress on this issue. Mr Dunne has said that if medical cannabis is effective, he will back it. He told us New Zealand’s drug policy is evidence-based, which sounds really good as there is no evidence the current law works, but for medical use it means any cannabis medicines must go through the same tests and trials as pharmaceuticals.

However, synthetic pharmaceuticals can take more than ten years and a billion dollars to make it to market, even with the backing of some of the world’s largest companies and financial assurances from patent rights. He advised that our drug policy would need to change to having a compassionate basis, which it currently does not have although he conceded it was the approach taken by some other countries. In the short space of time since then, things certainly have changed.

The heart breaking case of a young Nelson man named Alex Renton has forced the government to finally show some compassion. Alex lies in Wellington Hospital in an artificially induced coma after being stuck down with a rare form of epilepsy called ‘refractory status epilepticus’ a kind of prolonged seizure. The ICU team and specialists have already tried forty medications to try to stop the seizures, but nothing has worked.

Alex’s family read online about the cannabis extract cannabidiol (CBD), which has medical effects but does not make people feel high. His neurologist had also worked in the US and had heard of it there. CBD has been shown to reduce seizures from epilepsy. They agreed to try CBD on Alex – after all, they had already tried dozens of serious pharmaceuticals and none had worked.

But that is where evidence and science stopped, and where Drug War politics came up against humanity and compassion.

Firstly, Alex is legally an adult and was caught in a sort of legal limbo. His mother Rose Renton had to obtain a court order allowing her to make medical decisions for Alex. That was one delay.

Secondly, CBD is already listed in the Medicines Act and so you’d think it would be easy to prescribe. Non-medical use of CBD is not illegal, so anyone can order it online and import it without any issues. But if you want to use CBD medically, it comes under the Medicines Act and must be prescribed. However the only approved medicine here that contains CBD is Sativex, which also contains THC, the main psychoactive ingredient in cannabis. The Hospital were not willing to turn a blind eye to ‘non medical’ use nor were they keen to give Alex THC, apparently fearing that if Alex came out of the coma he might be distressed or disorientated from being ‘high’. But if it saved his life, would he really mind a rather pleasant, short lasting, side effect?

Regardless, there is no medicine approved here containing CBD that the hospital could use, so they needed to apply for special permission to import an experimental CBD medication called Elixinol from the US. This required import permits, storage facilities, and wading through more red tape.

Then the Hospital bureaucrats and P.R. guardians came into the picture. The Ethics committee wanted a say. Things slowed down. The family got frustrated. They dared to talk to the media and started a Change.org petition that quickly got over twenty thousand supporters. In what seemed like a childish hissy fit, the Hospital pulled the plug on applying to use CBD. Another week went by. The family did not give up, they talked to more media, and organised protests outside Wellington Hospital and in Nelson.

Finally, the bureaucrats at Capital and Coast District Health Board remembered they are there to help not hinder. Last Friday they agreed to fill out the forms and lodge the application, which they eventually did on Monday afternoon.

To his credit, Dunne acted quickly and granted permission on Tuesday morning. And to their credit, at least Wellington Hospital have at last done the right thing. The problem lies not with them but an outdated law that locks up access to medicinal cannabis tighter than hard core pharmaceuticals that have truly dangerous side effects and risks (Vioxx, anyone?).

What is really exciting is this is the first time permission has been granted to use a medical cannabis product that does not have the usual pharmaceutical-level testing and clinical trials. It took the cannabis extract Sativex many years to achieve this, which explains why it is so expensive compared to illicitly obtained or home grown medical cannabis. Legal access is treated like an application to use heroin.

It doesn’t deserve that status. Parliament must discuss changes to our outdated, inhumane drug laws. The Government has only paid lip service to the 2011 Law Commission report that recommended we take a compassionate approach to medical cannabis use.

Isolated extracts such as Sativex and Elixinol are welcome but should not be the only option, and seriously ill people and their caregivers should not have to go through what Alex and his family have just gone through to ease their suffering.

Hopefully Dunne’s latest move marks a shift from a strictly evidence-based approach that puts pharmaceutical companies first, to a compassionate approach that puts patients first.