“Mother fears son could die as Brexit stops medical cannabis supply”

Hannah Deacon, mother of nine-year-old epilepsy patient Alfie Dingley, sounded the alarm in the British press on 6 January. She says Alfie’s life is at risk after being told that Brexit stops medicinal cannabis supply for English patients.

Alfie suffers from a severe form of epilepsy, with 150 seizures a day being no exception. The condition is considered “life threatening” and Alfie does not respond to available regular medication. A few years ago it appeared that cannabis oil, according to pharmaceutical quality requirements and on the basis of standardized medicinal cannabis produced by the Transvaal Pharmacy in The Hague, was the solution.

Permission

After petitioning, in which Deacon received support from more than 40 families with children who have the same condition, British doctors were given permission in 2017 to prescribe the Dutch oil and the children had access to their “life-saving” medicine. Initially by travelling to the Netherlands and picking up the medicines themselves, later with the help of a courier service.

No alternative

There was great shock when the parents received a letter from the British Ministry of Health on December 17, in which it became clear that – in line with Brexit – they will have to look for an alternative medicine as of January 1, 2021. But according to Deacon, there is currently no alternative and her son’s life – and that of the other children – is in danger. “I am facing the fact that my son might go into refractory epiletic seizures again which can kill people”, she told the British press. “If Alfie is forced to take another product, his life is in danger.”

Empty-handed

Hannah Deacon’s alarm bell has also been heard in the Netherlands. The AD, one of the largest daily newspapers, asked pharmacist Paul Lebbink of the Transvaal Pharmacy for an initial response. Lebbink and colleagues are not allowed to honor doctors’ prescriptions from the United Kingdom due to Brexit and are currently left empty-handed. “We have developed a relationship with these patients and now have to abandon them.”
Lebbink indicates that the Transvaal Pharmacy will do everything possible to make sure that English patients can obtain their medicine in the future. At the same time, the Dutch Ministry of Health, Welfare and Sport has announced that the Dutch government wants to prevent as many problems as possible as a result of Brexit, “certainly for vulnerable people” and also if it concerns residents of the United Kingdom. “The Netherlands has indicated which steps the United Kingdom can take to solve the problem in practical terms and is in discussion with the British government about this. For this group it is important that a solution is found as soon as possible”, the AD quotes.

Update January 12

On December 9, 2020, Sage Journals published Ending the pain of children with severe epilepsy? An audit of the impact of medical cannabis in 10 patients, in which RR Zafar, AK Schlag and DJ Nutt report a case of series of 10 individuals using CBMP’s in the UK to treat their conditions. This retrospective study suggests that a combination of CBD and THC based products are effective in reducing seizure frequency in a range of epileptic conditions.
See link below.

On January 6, the Dutch Member of Parliament Carla Dik-Faber (ChristenUnie) has sent questions to the Minister for Medical Care on the consequences of Brexit for the supply of Dutch medicines to the United Kingdom. These questions explicitly refer to the situation of the more than 40 British children who are dependent on cannabis oil from the Netherlands. She also questions the solution provided by the UK Department of Health, namely alternatives to cannabis-based medicines that are accessible to British patients, but which are not a solution for Alfie Dingley and the other children. Almost at the same time, the Dutch ministry answered press questions, in which it was again indicated that in close consultation with the English government, a solution is being sought for the supply of products based on medicinal cannabis in both the short and long term.

The Times

On Saturday, January 8, The Times also posts an interview with Hannah Deacon. She outlines the seriousness of the condition Alfie suffers from and elaborates on the proposal by the English authorities (DHSC) to use similar alternatives to Dutch cannabis oil available in England, with different cannabinoid profiles. According to Deacon, this is ‘evidence of the DHSC’s “gross misunderstanding of botanical products.”

“Each product is made with a different plant, with different cannabinoid profiles. So it’s not like swapping a generic paracetamol for another one. You can’t just switch and hope for the best.”

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