Update: Since this article was published, an arrangement has been reached to allow the import of Bedrolite to the UK until July 1. The British and Dutch health authorities are now working towards finding a more permanent solution that will enable UK-based epilepsy patients to continue to access medical cannabis after Brexit.
Parents of severely epileptic children are desperately pleading with the British government to kick-start the flow of life-saving medical cannabis products, after supplies were halted due to Brexit. Shockingly, families were only made aware of the issue two weeks before the end of the Brexit transition period, giving them virtually no time to prepare for the rule change and generating a huge amount of distress and uncertainty.
The Impact Of Brexit On Medical Cannabis
While the majority of cannabis-based medical products are not affected by Brexit, one particular medicine, known as Bedrolite, has suddenly become unavailable to UK-based patients at very short notice. The reason for this is that while British doctors can prescribe Bedrolite, the product itself is currently only dispensed by pharmacies in Holland – and with the UK having exited the European Union, continental pharmacies are no longer able to accept British prescriptions.
Bedrolite contains nine percent CBD and less than one percent THC, and has proven itself to be extremely effective at treating certain forms of severe epilepsy. It is thought that 42 British children currently rely on the medication, yet have been unable to access it since beginning of this month, when the UK finally cut its ties with the EU.
Outrageously, the government waited until December 15 before revealing that the supply of Bedrolite was about to dry up. On that date, a letter sent to Bedrolite prescribers by the Department of Health and Social Care (DHSC) stated that “from 1 January 2021, prescriptions issued in the UK can no longer be lawfully dispensed in an EU Member State. Therefore, dispensing finished cannabis oil (Bedrocan products) in the Netherlands against prescriptions from UK prescribers is no longer an option from 1 January 2021.”
Essentially, then, parents were given two weeks’ warning that the medication on which their children’s lives depend was about to become unavailable.
What Is Bedrolite?
Produced by Bedrocan, Bedrolite is a medical cannabis product that is approved for sale in Dutch pharmacies. In 2017, the mother of a young British boy named Alfie Dingley decided to move her family to Holland in order to trial the medication as a treatment for her son’s severe epilepsy. In the five months that he spent in the Netherlands, Alfie went from experiencing 150 seizures a week to being virtually seizure-free.
After returning to the UK, Alfie’s mother Hannah Deacon embarked on a campaign to persuade the British government to allow the use of Bedrolite, resulting in Alfie receiving an NHS prescription for the medication in 2018.
There are currently 42 children taking Bedrolite in the UK, although only three of these have been granted their prescriptions on the NHS. The rest have had to pay for private prescriptions, at a cost of up to £2,500 a month for their life-saving supply.
Brexit Interrupts Bedrolite Supply
In its letter to prescribers, the DHSC recommended that clinicians help families identify alternative products for their children once Bedrolite becomes unavailable. However, Professor Mike Barnes, who was instrumental in convincing the government to allow the medication in the first place, has said that this would likely be extremely dangerous, and that some children “will die” if they are forced to switch to a different product.
He has accused the DHSC of “an astonishing level of ignorance,” adding that “each variety of cannabis is subtly different and you can’t just swap a child from one product to another.”
How Have Parents Responded?
After hearing about the rule change, Deacon immediately wrote to Prime Minister Boris Johnson, urging him to liaise with the Dutch government in order to find a solution to this life-or-death issue. However, in an interview with the BBC she explained that so far, the UK has “done nothing to interact with the Dutch authorities to try and sort it out.”
In a separate article published in the Guardian, Deacon explained that she has managed “to secure a couple of months worth of medicine,” but that she is extremely concerned about what may happen to Alfie once that supply runs out. It’s been eight months since his last seizure, and the thought of losing his medication and risking a deterioration in his condition is something that Deacon finds “terrifying”.
Meanwhile, Emily Carkeet, whose daughter Clover also relies on Bedrolite, told Somerset Live that “the government claims to be trying to sort it out, but at the moment, we have about 10 weeks of oil left.”
“We are waiting for a shipment to come in that would last us another three months, but we don’t know if it will arrive,” she added.
Similarly, Joane Griffiths, whose 11-year-old son Ben has seen a significant reduction in seizures thanks to Bedrolite, explained how she was “faced with the threat of not being able to access the medication even privately with only 13 days’ notice.” To avoid this nightmare scenario, she has called on the UK authorities “to not only fund this medication but to work with the Dutch government to find an urgent solution.”
In support of the families that are set to be affected by the post-Brexit rules, medical cannabis campaign group End Our Pain released a statement explaining how the situation “has left us scrambling to find a solution based on very limited information. The termination of medical cannabis supply from the Netherlands to the UK is a matter of life and death for these children. It’s imperative that the government act now to help reach a solution and help these families.”