Children left ‘desperate’ after ‘cruel’ ban on medicinal cannabis, says Welsh MP

Children with epilepsy taking a specific type of medicinal cannabis have been left “desperate” due to a “cruel” import ban, an MP has claimed.

Tonia Antoniazzi, Labour MP for Gower, said the Medicines and Healthcare products Regulatory Agency (MHRA) has notified the families of children with a private, rather than NHS, prescription for taking a medicinal cannabis product called Celixir20 that it will no longer allow compassionate imports.

Ms Antoniazzi referenced a promise made by Sajid Javid, prior to him becoming Health Secretary, where she said he promised to do all he could to help on the issue. She said Mr Javid will have broken his promise if he does not prevent the change.

Medicinal cannabis was legalised in 2018 after Mr Javid, then home secretary, said he had listened to concerns from parents of children with conditions such as severe epilepsy.

Celixir20

Ms Antoniazzi told the PA news agency that she was aware of at least two children who suffer from seizures who are currently taking the medicinal cannabis product Celixir20.

Speaking in the Commons, she said: “On September 26 2018, in a letter to Hannah Deacon, mum of Alfie Dingley, one of only three children in the United Kingdom with an NHS prescription for medical cannabis for severe epilepsy, the then home secretary said: ‘I am determined to do all I can to help in this area’.

“Yesterday the MHRA (Medicines and Healthcare products Regulatory Agency) has informed parents of children that do not have a prescription on the NHS that they will no longer continue to allow compassionate imports from Israel of Celixir20.

“Now, will the leader of the House call on the then home secretary, now Secretary of State for health, to come to this House and make a statement on the urgent imports of medicinal cannabis for these desperate children?”

Commons Leader Mark Spencer suggested raising the issue with the Health Secretary in the House.

Cruel

Speaking with the PA news agency, Ms Antoniazzi said: “I meet with the MHRA, it’s not like I haven’t met them. So for them to do this is particularly cruel.

“And it’s not really been in the spirit of the meetings that we’ve had, because we’ve been looking to find a way through. So for them to say they’re stopping the import is really really awful news for the parents.”

She added: “If they are unable to continue with their prescription, then, they will have to kind of wean their child off, unless they can access other brands.

“But they will have tried other brands, it’s kind of finding the right fit and this is the right fit for some of these families, and now it’s been taken away.

“It’s their lives. If their seizures return like they were, then, they will be back in hospital, they will be on very very strong unlicensed drugs which will cause them to be in a comatose state.

“These children have intractable epilepsy, what that means is there is nothing else that can be done for them. They have tried everything. This is the one that works for them.”

She said Mr Javid had previously done “brilliant” work in helping change the law in relation to medicinal cannabis, but added: “I think he’s broken his promise to do all he can for children and he’s broken his promise to Hannah because he did it for Alfie, but who else?

“Unless he can ensure this Celixir20 from Israel can continue to be brought into the country, then, you know it’s a broken promise as far as I’m concerned.”

The MHRA has been contacted for comment.