A charity set up to help fund the cost of children’s medical cannabis prescriptions has stepped in to support a family who face losing access to their son’s oil.
The family of six-year-old Oliver Rice, who has treatment-resistant epilepsy, has received a three-month financial grant from the charity Intractable Epilepsy to ensure he can continue accessing medical cannabis.
Oliver has a private prescription for a cannabis oil known as Celixir20, costing £1,224 per month.
However due to a change in MHRA regulations Celixir20 will no longer be permitted for import from the end of the year, leaving patients like Oliver without access to the medication which has been working for them.
The regulator announced in July that it would no longer be allowing imports from Israeli manufacturer, Bol Pharma, as its licence did not meet EU Good Manufacturing Practices (GMP) standards.
Oliver’s mother, Michelle Rice, says she felt the best way forward was to wean him off Celixir20, but his condition has already deteriorated.
“Oliver was administered the medical cannabis brand Celixir until August 2022. This had a profound beneficial effect on his seizure frequency and general wellbeing, but following warnings from the MHRA that import of Celixir may be blocked, we felt we had to wean Oliver off it,” explains Michelle.
“This has already resulted in a severe deterioration of his condition. We understand that a number of other very ill children are also affected.”
Oliver’s family are now looking to try Bedrocan oil, which is prescribed to several other children with intractable epilepsy in the UK, at the increased cost of £2,195 per month.
Intractable Epilepsy was set up earlier this year to provide financial support for families like Oliver’s who have been unable to access their cannabis prescriptions through the NHS.
With the provision of its first funding grant, the charity will help the family cover the costs of Bedrocan oil for three months.
“The only other suitable medical cannabis product that we believe could benefit Oliver is based on the Bedrocan range which is more expensive,” Michelle continued.
“We are struggling to afford it and so approached the newly registered charity Intractable Epilepsy for help. I cannot tell you the relief we felt as a family when our charity application was approved.”
Joanne Griffiths, vice chair of Intractable Epilepsy, commented: “We are delighted to be able to help the family for at least a short period. It is the first time the charity has given a funding grant since it was registered and we approved the application given the emergency the family were faced with.
“We are here for every family that needs us, but we rely completely on donations. We are so grateful to the people that donate to us, we need even more donations to secure long-term help for families like Oliver’s with the large prescription costs, for the medicine that is improving seizures and giving affected children their lives back.”
Call for government to find a solution
Meanwhile, Oliver’s dad, Matt Rice, has called on the UK government to find a solution to allow Celixir to continue being imported for patients like Oliver.
When Brexit threatened to prevent the importation of Bedrocan oils from the Netherlands in 2020, the government stepped in to ensure the continued supply of the medication. The oils are now being produced in the UK by Target Healthcare.
“We know from experience that where there’s a will, there’s a way,” said Matt.
“When Brexit caused an issue with the supply of Bedrocan in late 2020, the UK Government pulled out all the stops. They worked closely with the Dutch government, the MHRA, and the DHSC, to maintain supply of the medication, even to the point that they have helped facilitate the manufacture of the product here in the UK.
“They did this because it was not ethical for children to just stop their prescribed epilepsy medication.”
He added: “If that ethical view applied in that instance, it should apply to this case. That’s why families like us that are affected by the Celixir supply issue are calling for the government and the MHRA to find a workable solution that will allow the continued import of the medicine.”
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