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'A monumental shame': U.K. politician calls out lack of medical cannabis access

Media Partners, The GrowthOp

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A bill now in its second reading proposes a new commission on medical cannabis.

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A Medical Cannabis (Access) Bill is currently being debated in the House of Commons and Labour MP, Andy McDonald, is among the politicians pushing for improved access, reports the South Wales Argus .

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McDonald lost his son at just 16 years old to epilepsy and said he “bitterly regrets” not investigating whether medical cannabis could have improved his son’s outlook.

  1. Nearly three years since Alfie was given a cannabis licence, a total of three children have been granted prescriptions for whole plant medicinal products on the NHS. PHOTO BY CLARE CARROLL

    Brexit, medical cannabis and the children abandoned by the U.K. government

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    Seven-year-old girl with rare form of epilepsy makes ‘amazing’ recovery thanks to cannabis oil

  3. LONDON, ENGLAND - MARCH 20: Six-year-old Alfie Dingley poses on Westminster Bridge.  (Photo by Jack Taylor/Getty Images)

    Access to medical cannabis remains a challenge in the U.K., argues mother of chronically ill child

An emotional McDonald highlighted the tireless advocacy of Hannah Deacon, the mother of Alfie Dingley, who became the first person in the U.K. to receive a permanent medical cannabis licence in 2018 when he was six years old .

Since then, just three prescriptions for cannabis-based medicines have been issued through the National Health Service, and as many as 10,000 families have been forced to pursue private prescriptions, which can cost several thousand dollars a month. Some families have been forced to seek treatment outside of the U.K., in places like the Netherlands, where cannabis medicines are easier to access.

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Dingley has a rare form of epilepsy called PCDH19 and was experiencing upwards of 500 seizures a month as a child. Traditional treatments failed to treat his seizures effectively but after five weeks of taking Bedrolite, a CBD oil, he went 17 days without a seizure, the longest streak of his life.

“I just bitterly regret that I have not shown the courage and the determination of people like Hannah Deacon in securing that medication for her child. Oh, how I wish I had been as wise as she,” McDonald said.

The bill, which is sponsored by Labour MP Jeff Smith, proposes a new commission on medical cannabis, with the goal of giving doctors and NHS bodies “more confidence in the evidence for prescribing these particular unlicensed medicines.”

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After Dingley received his cannabis prescription, Deacon thought the tide might be turning in the U.K. when it comes to medical cannabis, but that hasn’t been the case.

“We thought, ‘brilliant,’ you know, we’ve helped Alfie and we’re going to help many other millions of people because of it,” Deacon told The GrowthOp earlier this year. “But actually, the reality is that it hasn’t. It’s been blocked at every corner.”

Deacon counts stigma and the NHS’s pharmaceutical model, built on clinical trials, among the roadblocks preventing access to medical cannabis.

“You cannot simply do a randomized controlled trial on a whole plant to cover this product because you still won’t know what the active ingredient truly is,” Deacon said, adding that many families have been forced to fundraise to cover private prescription costs, which can quickly surpass £2,000 ($3,400) a month.

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“You have people with very seriously ill children who have very, very difficult lives who are trying their best to keep their children alive and out of the hospital. And they’re having to also then fundraise thousands of pounds every month to keep getting a prescription for a product that works for them,” she said. “It’s disgraceful, to be honest. It really is disgraceful what the government is doing here.”

One organization trying to expand access to medical cannabis is End our Pain , which is calling for Bedrolite to be covered under the NHS.

Among the families involved with the campaign are Lucy Richardson and her seven-year-old daughter, Sienna.  Sienna made a “miracle” recovery after treating her rare form of epilepsy, Landau Kleffner syndrome, with cannabis oil.

Within two weeks of taking Bedrolite, Sienna’s condition began to improve, Richardson said earlier this year.

“She is living a normal life, she is still in mainstream school, playing with friends, she is doing really, really well,” she said. “When we saw her getting better and better, it was amazing.”

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