14th January 2021
By Roland Sebestyén
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Although in general, the UK medical cannabis market is expected to flourish outside the EU, children with severe cases of treatment-resistant epilepsy could be in danger due to the introduction of strict import regulations on their medication.

The Times reports that the families of more than 40 children in need of medical cannabis from the Netherlands are seething following changes to the prescription process as of 1 January. The new post-Brexit rules mean that “British prescriptions are no longer recognised in the European Union.”

This is particularly worrying for a number of patients living with treatment-resistant epilepsy, as the Times writes, according to the Dutch laws, medications derived from cannabis cannot be exported without such prescriptions. This is set to leave sick children without their vital medicine, Bedrolite.

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Bedrolite, a cannabis variety with around 9% CBD and 1% (or lower) THC, is a cannabis oil that is proved to be efficient in easing or limiting the symptoms of seizures.

One of the children, Alfie Dingley’s mother, Hannah Deacon said: “I am absolutely disgusted with how this has been dealt with by the Department of Health.”

Reportedly, prescribing doctors only received details of the changes in a letter from the Department of Health on 17 December 2020 – just two weeks before the new rules were set to come in on 1 January 2021. From this date, medical cannabis prescriptions issued in the UK would no longer be valid for completion in EU member states.

Ms Deacon said: “They gave us only two weeks’ notice and said there are other products available in the UK, but that shows a complete lack of understanding of epilepsy and how dangerous it is to swap products.”

Alfie and his parents have been fighting for fair access to the medication that works for him for years. As a result, in 2018 he became the first person in the UK to be issued with a medical cannabis prescription on the NHS.

However, as Ms Deacon writes in the Independent, the struggle for fair patient access to medical cannabis in the UK continues, with the Brexit changes being the latest chapter to a long struggle.

“Alfie has been seizure-free for eight months on Bedrolite. Other products don’t have the same cannabinoids and terpenes. It’s really frightening because one seizure could kill him.

“If the department just contacted the Office of Medical Cannabis in Holland, they could discuss it and find a way, I am sure. But they seem to have no appetite to sort this out.

“We told the department that children would be put in a life-threatening situation if they were forced to change medication and it wrote back to say they understand it is ‘concerning’.

“It is not just concerning — this is the life and death of my child. We fought for years to get this medication. The lack of empathy is disgraceful. I feel so angry and upset. Are none of them parents?”

While we also reported that experts had claimed Brexit could be of great value for the UK cannabis market in general, it seems as though on individual levels, some of the most vulnerable patients could be left all alone.

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