It’s been a full year since the UK legalised medical cannabis, but you’d be forgiven for forgetting it ever happened. As of September, 2019, a grand total of 18 NHS prescriptions for unlicensed cannabis medicines had been issued. Even Billy Caldwell – the 14-year-old with severe epilepsy whose plight triggered reform in the UK – has so far been denied NHS treatment.
Compare the UK’s situation to the US, where medical cannabis was first introduced at the state level over 20 years ago through ballot initiatives – a form of direct democracy that allows citizen petitions with enough signatures to go to a public vote. With no such mechanism in the UK (and no chance of a constitutional court challenge, as successfully employed in Canada and Germany), UK reform was always going to be in the hands of politicians – and has been predictably underwhelming.
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Following a year-long review, prescribing guidelines issued by the National Institute for Health and Care Excellence (NICE) confirm that UK access to medical cannabis will remain disappointingly meagre.
The new guidelines – which effectively determine the extent to which medical cannabis is available on the NHS – recommend its use in only a highly limited set of circumstances. In a blow to those with chronic pain – about 13 percent of UK adults – NICE has recommended not to offer medical cannabis of any kind. This perverse conclusion is at odds with practice in most other countries; in Germany, for example, over two-thirds of cannabis prescriptions are pain-related.
The guidelines do offer some positive developments: patients with MS-induced muscle spasms can now trial the cannabis-derived spray Sativex, and the new CBD medicine Epidyolex may be prescribed for two rare forms of epilepsy. But all the medicines that NICE has so far recommended are licensed, pharmaceutical products that have already undergone rigorous medical approval.
“Unlicensed” medical cannabis products – like dried flower and the whole-plant extracts used to treat Billy Caldwell and Alfie Dingley, another young epilepsy patient who made the news ahead of the UK law change – remain all-but-impossible to obtain on the NHS, regardless of the severity of a patient’s condition.
Two major hurdles are to blame for this poor access to medical cannabis in the UK: a lack of robust clinical data and the high price of medicinal cannabis products.
NICE has based their prescribing advice on the “gold standard” of clinical data, randomised controlled trials (RCT). But thanks to decades of prohibition all but eliminating research into cannabis’ therapeutic potential, evidence of this calibre doesn’t yet exist for many of the conditions where there is anecdotal and observational data to support treatment. So by excluding most non-RCT evidence, non-English language studies and papers that examined smoked cannabis, the UK has established a system more conservative than almost any other medical cannabis programme to date.
Hannah Deacon – whose son, Alfie Dingley, was the first in the country to be granted a licence for medical cannabis in June of 2018 – says, “For many thousands of patients across the UK, the NICE guidelines are a huge missed opportunity to allow appropriate access to full extract medical cannabis on prescription, like my son Alfie accesses on the NHS.”
While Hannah understands the importance of calls for further clinical trials, she points out that “many medications given to children, especially with epilepsy, are not licensed and have not had RCT clinical trials in children. This is clear hypocrisy. I would like to see doctors prescribing and learning from observational data, so many patients – especially those with severe epilepsy and chronic pain – can access treatment as soon as possible.”
Of course, the reality is different for those wealthy (or desperate) enough to turn to the private sector. Private specialists have greater discretion to deviate from official guidelines and to prescribe in a broader range of circumstances. As a result, the vast majority of UK cannabis prescriptions have come from independent doctors, with several specialist clinics established in the past year alone. But these private cannabis prescriptions come at an eye-watering price tag of hundreds and even thousands of pounds per month. Little wonder that, even privately, only 136 prescriptions have been filed.
Medical cannabis is expensive because it’s hard to get hold of. Dried flower and extracts have to be imported from Canada and the Netherlands, a lengthy, convoluted and bureaucratic process with licensing and courier costs that further raise the price to patients. Domestic production would help address this issue, but the Home Office is certainly in no rush to green-light new cannabis facilities.
High prices affect NHS access, too: with limited resources and stretched budgets, prescribing guidelines are based on the cost-effectiveness of treatments rather than their efficacy alone. From today’s baseline, medicinal cannabis would have to become either six times less expensive or eight times more effective to be considered as an NHS treatment for chronic pain. Even Sativex and Epidyolex only received endorsement because their manufacturer, GW Pharmaceuticals, agreed to reduce their price to the NHS. And even when guidelines allow for prescription, local funding bodies may lack the resources to fund such treatment.
The UK’s situation will probably improve over time. Distributors are starting to secure a wider range of products and costs are already falling, and additional EU sources of medical cannabis are due to come online shortly. Eventually, the strength and breadth of clinical data will improve, resulting in a gradual expansion of the conditions medical cannabis is allowed to treat. But this is all rather cold comfort for those who are locked out of treatment right now.
Is there another way to fix the impasse? Perhaps counterintuitively, at this point full-blown legalisation may be the most effective solution. Polls now show that 69 percent of the population is supportive of legalisation, and with Luxembourg committed to cannabis reform and a New Zealand referendum in 2020, recreational cannabis may be closer than imagined even a few years ago.
In reality, the line between medical and recreational cannabis use is already blurred. A poll released last week by the Centre for Medical Cannabis and Cannabis Patient Advocacy & Support Servicesestimated that potentially 1.4 million UK users of illegal cannabis are self-medicating a diagnosed condition – over half of them on a daily basis. This excludes those who medicate for a self-diagnosed condition, so even this understates the extent of disguised medical use. The disconnect between the hundreds of thousands of unofficial medical users and the handful of patients with a prescription to date is stark.
The political will for reform might actually be there, too: the Greens and Liberal Democrats have long favoured cannabis legislation. The Labour Party has recently committed to a Royal Commission review on drug policy, and the Labour MP David Lammy notably came out for legalisation earlier this year.
Even among Tories there is openness to reform, with pro-legalisation advisers appointed to Boris Johnson’s top team. If Britain ever musters the political bandwidth to deal with something other than Brexit, a policy that appeals to young voters, cuts crime and generates tax revenues may look pretty appealing.
There will be those who claim that backing full legalisation shows that medical access was just a trojan horse for recreational use. But patient advocates may soon face a tough choice: whether to continue pushing for conventional treatment against regulators deeply sceptical of their cause, or to throw their weight behind broader legalisation in the hope it delivers patients a safe and reliable supply of cannabis, with or without the support of the medical establishment.
