The government legalised medical cannabis in 2018, as a result of the tireless campaigning of two families with epileptic children. However, nearly five years on, up to 20 children face losing access to their life-saving prescription following the retirement of one of the two prescribers in the UK. With no other safe and legal route to access the drug, the families will be forced to wean their children off the medication, which will likely result in more severe and potentially life-threatening seizures.
For several families in the UK with children who suffer from rare and severe treatment-resistant epilepsy, medical cannabis has significantly improved their quality-of-life, reducing the frequency of some children’s seizures dramatically. The law change in 2018 offered a beacon of hope that families would finally have access to life-changing and life-saving medication.
Although the treatment is available via the NHS, a reluctance to prescribe means that many families pay hundreds to thousands of pounds per month for a private medical cannabis prescription.
Many believe that the law change put an end to the crisis of paediatric access to medical cannabis. However, few outside the sector itself understand that many families still face issues with access. The cost of medication has consistently been a barrier, but now there is the risk of not being prescribed at all with one of the two prescribers in the UK set to retire at the end of July.
Although the doctor states he has tried to set up a handover of the prescriptions for over a year, this has not been achieved – leaving the children with no other route of accessing medical cannabis. This directly exposes these children to the risk of harm – either they will face being put on a medication that doesn’t work or families will be forced to procure illicit cannabis.
Finding other prescribers that are willing and able to prescribe the drug has been extremely challenging. Much of the apprehension to prescribe medical cannabis to paediatric patients stems from the unproven safety profile of THC and the classification of cannabis as an ‘unlicensed medicine’. This means that the prescribing doctor is left to take on the clinical risk of each child.
Furthermore, the British Paediatric Neurology Association advises against prescribing unlicensed cannabis medicines. Though they have no legal authority to regulate what clinicians prescribe, they have a strong sway amongst the UK paediatric neurologist community.
Many clinicians point towards the need for more robust scientific evidence, namely randomised controlled trials (RCTs), to support prescribing the drug. However, industry leaders, such as Hannah Deacon, Co-founder and Chair of MedCan Family Foundation, feel that these concerns are not well-founded:
“Although the desire for high-grade RCT research is understandable, in cases of botanical extracts it’s impossible to achieve. This also ignores the overwhelming weight of positive evidence from non-RCT studies and real-world evidence. We cannot afford to sit and wait for an impossible standard of research when the lives of so many children are at risk.”
“Having to standardise medicinal cannabis along with standardised doses, which is required within an RCT setting, would make it very challenging to see results with epilepsy, as even when diagnosed with similar epilepsy conditions, children respond very differently to treatments. This is why it is so challenging to treat children with severe epilepsy and why it’s so important that there is a more holistic approach encouraged when looking at how we support the development of new treatments for epilepsy.”
Matt Hughes, CEO and also Co-founder of MedCan Family Foundation also drew on this:
“It’s this need for randomised controlled trials, that’s the main sticking point. And we’re now getting to a situation where we’ve got the government and we’ve got the BPNA in particular who are saying we need RCTs moving forward – but who’s going to supply those?
So no one’s going to come forward with these RCTs and we’ve got UK production still in the developing phase and still looking to get investment. So it’s this catch-22 that RCTs are important, but they’re not the be all and end all. We’ve got a huge amount of [anecdotal] evidence, so can we meet a balance in between? So rather than families going to the illicit market because there’s no prescribers, getting the wrong information, getting the wrong product, getting products that aren’t regulated […], let’s take a harm reduction approach and start prescribing.”
Although the desire for high-grade research is understandable and necessary, the time to act on this issue is now – as Matt Hughes stated:
“These children have come to the end of the road, this isn’t the first option for them, it’s the very very last. They’ve already been through brain surgery, they’ve already been through all the other antiepileptics.”
The grave nature of the situation means that many parents are, understandably, placing demand on clinicians for their help. However, with a limited pool of prescribers, many feel stretched in their ability to safely take on new paediatric patients. Furthermore, new prescribers may feel overburdened with the pressure that is currently being placed on clinicians.
As it stands, the situation is appalling. However, policymakers and industry leaders are desperately working to find a solution.
Following discussions at a private parliamentary roundtable event, the All Party Parliamentary Group for Medical Cannabis under Prescription have partnered with stakeholders to create an Alliance for Paediatric Care. By building an extended community of prescribers, the Alliance hopes begin unpicking the problem of paediatric access.
To tackle the issue, Script Assist will be providing free training to paediatricians with a special interest in epilepsy and paediatric neurologists throughout July for the Alliance.
Ben Hamburger, Founder of Script Assist said:
“Through technology, training, and community, we’re empowering paediatricians to change lives. The Alliance for Paediatric Care is at the forefront of ensuring children with drug-resistant epilepsy have access to the medication they need. Script Assist will be providing training to as many paediatricians with a special interest in epilepsy and paediatric neurologists as possible throughout July”
Once equipped with the necessary governance and expertise, the aim is for the Alliance to enable consistent access to medical cannabis.
This piece was written by Volteface Content and Media Officer Megan Townsend. She is particularly interested in the reform of drug legislation, subcultural drug use and harm reduction initiatives. She also has an MA in Criminology from Birmingham City University. Tweets @megant2799.