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

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It was on a national stage that Hannah Deacon learned that her son, Alfie, would become the first patient in the United Kingdom to receive a permanent cannabis licence.

With few alternatives left to explore, the family moved to the Netherlands in 2017 so Alfie could legally access medical cannabis. He was prescribed Bedrolite CBD oil shortly after their arrival and after five weeks of treatment, he went 17 days without a seizure — the longest streak of his life.

Upon returning home to the U.K. in 2018, Deacon began tirelessly lobbying for medical cannabis to be made available under the National Health Service (NHS). Deacon joined the campaign group End Our Pain, made up of other families and advocates calling for access to medical cannabis, appeared on BBC and in other media across the country, even meeting with then Prime Minister Theresa May in Nov. 2018. May vowed to get Alfie access to his medicine, Deacon says.

Three months later, while being interviewed on the British television network ITV News, it was revealed that Alfie would be granted the country’s first licence for medical cannabis. Cannabis-based products were also rescheduled from Schedule 1 to Schedule 2, enabling specialists to prescribe them and potentially opening the door for greater access.

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

Nearly three years since Alfie was granted that licence, a total of three children have been granted prescriptions for medicinal cannabis products on the NHS. Epilepsy affects more than 500,000 people in the U.K., according to NHS data.

“There’s no funding pathway. There’s no desire to prescribe it. I think there’s a huge amount of stigma still around the word cannabis,” Deacon says.

And following Brexit, the situation has only grown worse.

As of Jan. 1, U.K. prescriptions are no longer recognized in the Netherlands. With many families travelling to the country to get private cannabis prescriptions filled — and Dutch law requiring a valid prescription to export cannabis products — more than 40 families are being forced to find alternatives.

Deacon says they were given two weeks’ notice about the change and she only found out because letters were sent to stakeholders and campaign groups and clinics within the sector, not to the families directly impacted.

Luckily, the family had secured a few months supply of Bedrolite in the months prior but not every family is in that position. After Deacon, once again, began lobbying and getting in front of the issue, the U.K. government made an agreement with the Dutch government to allow imports to continue until July 1. After that, it’s not clear what will happen.

Deacon believes, had it not been for another media campaign, the government would not have taken any action on the issue.

“My personal opinion on it is that it is incredibly sad that the government doesn’t just do the right thing for people like my child. They have to be pushed to do the right thing, because they have pressure from the media,” she says. “And that really is, as far as I’m concerned, unacceptable to put children and their families who are vulnerable into a situation where they have to fight tooth and nail all the time to get access to medicine which is proven to work.”

The hesitancy to prescribe medical cannabis products under the NHS stems from a few issues, Deacon explains, but mainly the fact that the NHS is built on a pharmaceutical model and randomized clinical trials. Cannabis, with its hundreds of compounds, doesn’t quite fit into that framework.

“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 says, adding that adopting a botanical medicine framework would be more appropriate.

In order for prescriptions to be covered by the NHS, the products need to be approved by the National Institute for Health and Care Excellence (NICE). NICE has maintained that there’s not enough clinical evidence of the safety of these medicines and other organizations like the Royal College of Physicians and the British Pediatric Neurology Association have supported that stance. According to Deacon, that leads to an environment where physicians are hesitant to prescribe medical cannabis.

“The British Paediatric Neurology Association (BPNA) actually says in their guidance that they think that brain surgery should be considered in children before the consideration of prescription for whole plant medicinal cannabis products,” she says. “So that’s pretty extreme.”

One organization working to challenge those perceptions, and provide independent, evidence-based information on cannabis and other drugs is Drug Science, founded in 2010 by Professor David Nutt, a former government drug adviser. Up to 20,000 patients are taking part in Project TWENTY21, a nationwide trial that will test the efficacy of cannabis on a number of conditions, including epilepsy. The hope is to provide enough data and evidence to British lawmakers to increase access to medical cannabis.

“Medical cannabis is still out of reach for far too many,” Nutt told The Guardian in 2019. “Patients are left untreated, in significant debt from the cost of private prescriptions or criminalized as they are forced to turn to the black market. They don’t deserve any of this, and the situation with prescribing desperately needs to change.”

In the letter sent by the Department of Health, informing industry stakeholders of the upcoming Brexit changes, it was suggested that patients could transition to alternative medications, such as Sativex and Epidiolex, CBD products that are licenced for use in the U.K.

In an interview with The Guardian, neurologist Dr. Mike Barnes, who helped secure Alfie’s prescription to Bedrolite, said that stance displayed “an astonishing level of ignorance” to believe that every cannabis product is the same and produces the same therapeutic effects.

“Each variety of cannabis is subtly different and you can’t just swap a child from one product to another,” Dr. Barnes said.

“It’s not as easy as just swapping someone from one thing to another and hoping for the best, especially with refractory epilepsy where seizures can kill you,” Deacon adds.

With no coverage available, families are paying upwards of £2,000 ($3,400) a month for medical cannabis products, Deacon says, with many turning to fundraising and donations to cover the costs. Some have even been forced to sell their homes.

“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. So it’s just… it’s disgraceful, to be honest. It really is disgraceful what the government is doing here.”

As for the argument about a lack of robust safety evidence for cannabis products, Deacon comes at it from a different angle.

“I think there’s actually, in truth, more evidence of the safety of cannabis as medicine over the last 5,000 years than there is for any other pharmaceutical, which is what the irony of it is.”

She says she can’t help but wonder how Alfie’s health might have been different had cannabis been his first line of treatment, instead of mass quantities of powerful pharmaceutical drugs.

“He is a very happy boy on the whole now, but he has very severe learning difficulties. And is that due to the amount of pharmaceuticals he had pumped into him as a baby? I don’t know. It’s probably that and to do with the thousands of seizures he’s had over his life. Had he been given cannabis as a baby, would he be that person? I don’t know. And I think that’s what is such a shame about this is that it’s not patient-centred care. It’s not harm reduction.”

Earlier this month, Alfie, now 9-years-old, reached a new milestone. He’s gone a full year without a seizure.

“To reach a whole year with no seizures is a huge, huge step in the right direction for his health and for our quality of life as a family,” Deacon says. “For that to be put at risk by basically people not caring enough and too much bureaucracy is very, very sad.”

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