Medicinal cannabis: why punish patients for regulatory failure?

Last December, Carly Barton made the headlines as the first UK patient to be given a medicinal cannabis prescription. A fibromyalgia patient, Barton was initially laughed out of the pharmacists when she sought to fulfil her private prescription for a month’s worth of medicine, which, when it was eventually provided, cost her £1,400.

When her savings ran dry and she sought an NHS prescription, her previously sceptical pain specialist obliged, impressed that cannabis endowed Barton with greater functionality than any of a long list of her previous prescription drugs.

In spite of the evidence supporting the use of cannabis for chronic pain in fibromyalgia, and a local specialist affirming its clinical efficacy in Barton’s case, in particular, the regional clinical commissioning group blocked the prescription on the grounds that cannabis is an untested medicine.

This has been the fate of all attempted NHS prescriptions since November. Unable to afford another private script, Barton made a modest investment of some £80 to begin growing her own medicine: six cannabis plants of the strain she has found to relieve her symptoms.

She disclosed the illegal operation to the police, detailing what she was growing, where, and in what quantities, with the intention of relinquishing any cannabis over and above that which she needs for her own medical purposes. 

A carefully calculated act of civil disobedience, Barton’s actions are reminiscent of those of Charlotte Caldwell, the mother of a severely epileptic boy, who last year “openly smuggled” the Canadian-prescribed medical cannabis oil that relieved her son of his dozens of daily seizures.

Though the medicine was confiscated at Heathrow, the case laid bare the injustice of the prevailing system: Caldwell had been forced to choose between doing what the law required and doing what her child’s health required.

A system that imposes this choice upon parents is not a system that is likely to be respected, and it is unsurprising that Caldwell’s act precipitated the recent change in the law surrounding cannabis.

Just as we honour a parent’s prerogative to do what is right by their children, we typically respect a patient’s right to autonomous, informed decision-making about their own care, recognising as we do their ability to judge what is in their best interests.

Regardless of the expertise of regulators and physicians in judging what might be best for a patient’s health, we recognise that patients are best placed to decide what is best for their overall wellbeing: consider the Jehovah’s Witness who values her religious commitments over a medically advised blood transfusion, or the woman with cancer who, sorely wishing to become a mother, refuses the chemotherapy that risks her future fertility and chooses a less effective treatment.

Whatever we might think about the wisdom of such choices, we recognise that coercing a patient into some treatment is unacceptable.

An equally perverse threat to a patient’s autonomy is state coercion away from treatment. In the United States, it is not unheard of for elderly patients, unable to afford prescriptions for cholesterol and blood pressure medicines, to travel across the border to Canada to access them affordably or have them imported.

Both practices are illegal. The state has no obligation to provide a patient with some desired medicine: it is not the role of the NHS to provide any medication, at any expense, to any patient, out of the public purse. But it is nonetheless an overreach to criminalise a patient who procures a medicine by other means.

This same overreach of state power, coercion away from some legitimate treatment choice, is underway in the UK, with patients being prosecuted for the possession of cannabis for demonstrably medicinal purposes.

This is precisely the risk that Barton is undertaking with her home cultivation set-up. Although conservative estimates suggest some 30,000 people are self-medicating with cannabis in the UK, Barton’s particular case has features that may well plant the seeds of further legal reform in the UK.

Cannabis has provided her with demonstrably significant relief from a serious medical condition; there is no doubt about its efficacy for her. She followed all of the rules for accessing the medicine she needs, and yet, she was denied it.

Had Charlotte Caldwell meekly waited for an often uninterested or unsympathetic political class to fix the system, her son’s medicine would still be illegal in the UK. Likewise, there are few cases where civil disobedience is more clearly justified than in Barton’s.

Otherwise disabled by fibromyalgia and the opioid medications prescribed for its management, she needs cannabis. If it cannot be procured through legitimate channels, so much the worse for the legitimate channels.

With this in mind that Barton has set up “Carly’s Amnesty“, gathering together medicinal cannabis users willing to grow their own medicine in open defiance of the law, but in a spirit of cooperation with their local authorities.

The scheme is restricted to those who, like Barton, have the strongest moral credentials for undertaking a home grow: who have a certified diagnosis of one of the few medical conditions for which NICE currently permit the use of cannabis, who have tried and failed to access the medicine through the NHS, and who are unable to afford a private prescription.

Prosecutions aside, the current system for regulating medicinal cannabis in the UK is problematic. For the narrow range of indications for which cannabis may be prescribed, it may only be used as a treatment of last resort, “where established treatment options have been exhausted.”

The irrationality of this is most clearly seen for chronic pain patients like Barton. Before considering a prescription for the comparatively mild cannabis, patients must cycle through a long list of painkillers, many with greater harm profiles and more significant side-effects, and far more likely to produce dependence.

Such a patient’s autonomy is respected if she refuses continued treatment with opioid painkillers that produce intolerable side-effects. But to access the medicine she judges to be best for her overall wellbeing, she must first endure a series of drugs that come with side-effects as bad, or worse, as the condition itself.

Moreover, medical cannabis patients’ decision-making is typically overruled by physicians comparatively lacking in the relevant expertise. Most of the senior clinicians sitting on the prescription-blocking commissioning groups qualified before the discovery of the endocannabinoid system, and before research established its significant role in health and disease.

Of the doctors authorised to prescribe, few have accessed professional development courses on cannabinoid pharmacology. By comparison, more than 80 per cent of self-medicating cannabis patients report knowing the best type and strength of cannabis for their condition (either by research, self-experimentation, or some combination).

Broadly, two arguments are rallied in defence of the status quo: risks of harm to patients, and risks of harm to society. Neither of these can justify prosecuting the likes of Barton. There are real risks of harm associated with smoking cannabis, even medicinally.

This is likely why the majority of those illicitly self-medicating with cannabis in the UK choose other routes of administration. Procuring cannabis from the black market often contributes to the coffers of organised crime, and it is understood that many criminal groups funnel money made from the sale of drugs towards other reprehensible activities that incur significant costs to the fabric of society.

But the connection between cannabis and such criminality is not necessary. Growing cannabis is relatively easy, and patients permitted to grow their own medicine without fear of prosecution would not need to engage with or fund organised crime.

While Barton attempts to secure support for her scheme from police and crime commissioners, her own personal growing operation, and those of others in her situation, are an open challenge to the government which demands some action in response.

Given last year’s official legitimisation of medical cannabis, it would be grossly unfair to confiscate a patient’s medicine and arrest and prosecute them to boot, when they had exhausted their options within a system that ultimately failed them.

Inaction would amount to a recognition of the unjustness of the law, and what government, with the privilege of setting the legislative agenda, knowingly allows the continuation of an unjust law? So long as cannabis patients are forced to choose between doing what the law requires, and doing what their health requires, the law must change.

The recent changes to medical cannabis legislation in the UK were hastily introduced, and as such the rules surrounding cannabis were tacked onto existing regulations and frameworks governing medicines and controlled drugs.

In the current climate, there is likely little appetite here to dedicate the necessary resources to generate separate, bespoke regulations for medical cannabis, of the kind seen in Canada and elsewhere.

Nonetheless, corrective measures to better respect the rights of patients like Barton do not require a wholesale change to the law.

One option would be moving cannabis to schedule 4 (ii) of the Misuse of Drugs regulations, controlling it as we do anabolic steroids: while illegal to sell steroids, guidelines demand that those possessing small amounts, clearly for personal use, should not be prosecuted.

Such a move would protect recreational, as well as medicinal users, so some may object to it as decriminalisation through the back door. Another option would be to reduce the cost and liberalise the issuing of the licences required to cultivate cannabis legally.

Such licences currently cost nearly £5,000, and are only issued to commercial operators betting on a European cannabis boom over the next decade.

Issuing such licences to patients upon receiving proof of diagnosis, while withholding the associated licence to supply, would restore the patient’s right to choose their treatment without coercion.

In this matter, the health and freedom of patients must always come first.

Since this article was written, Carly Barton’s cannabis has been confiscated by police.

Written by Eddie Jacobs

Eddie Jacobs is a writer and researcher interested in drugs science and policy. His recent projects include supporting the Beckley Foundation's forthcoming 'Roadmaps to Regulation' reports.