UK: Don’t Deny My Daughter The Cannabis That Could Save Her

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Billy Caldwell is a 12-year-old boy with severe epilepsy. Last week, British airport officials confiscated the cannabis oil his mother was using to treat his condition, because the tetrahydrocannabinol (THC) it contains is illegal in the UK. He ended up in hospital after his seizures intensified. After the intervention of Billy’s doctors, the home secretary, Sajid Javid, has allowed the return of the drug on the grounds that this situation was a “medical emergency”. Today William Hague, who advocated a “zero-tolerance” approach to cannabis when he was Tory leader, says he has changed his mind, and that Billy’s case “provides one of those illuminating moments when a longstanding policy is revealed to be inappropriate”. And, in a statement to the Commons, Javid proposed a government review of the use of cannabis for medicinal purposes.

I’m pleased about this – and feel particular sympathy for the Caldwell family. My daughter Sia is 17 years old and, like Billy, experiences severe seizures. Sia had her first when she was a little over two years old. Initially we were told it was a febrile seizure resulting from a high temperature; then that she’d probably grow out of it, or that the right medication would provide seizure control. In the beginning, her seizures came occasionally, out of the blue. Then they were monthly. Now they happen daily. They knock her over, throw her off her chair, make her unable to sleep, and keep her permanently exhausted.

Over the course of her illness, I have logged every single visible seizure she has had. She has hundreds more, which we don’t see. Last week I spent seven days with her in bed. She had eight seizures, one after the other. She lay curled up like a fetus and couldn’t eat or drink. I syringed water and Calogen, a food supplement, into her mouth during her lucid moments. By the end of the week she had lost another three kilos.

We have been through pretty much the entire spectrum of seizure medication. As we ran out of traditional treatments, we became more experimental – homeopathy, osteopathy. Then we were enrolled on a trial with Great Ormond Street hospital for the ketogenic diet: a high-fat, low-carb diet that can sometimes have a dramatic effect on children with drug-resistant epilepsy. It was helpful for Sia, but she had to come off it when her cholesterol levels rose dangerously high.

Recently she had a vagal nerve stimulator implanted. This sends small electric currents up the vagus nerve to the brain, and is one of the few treatments available to patients when all else has failed. It helps a little. Naturally, we want to be able to access anything that has a chance of reducing the number and severity of her seizures. Were cannabis oil available on prescription, there’s no question we would want to trial it. It’s our duty as a family to explore every available avenue when it comes to our daughter’s treatment.

Because ever since that first seizure, we’ve lost her, bit by bit. Our tiny, bubbly two-year-old, who engaged everyone in conversation, rode her tricycle round the park, and was developmentally ahead of her peer group, is now nonverbal, almost completely wheelchair-bound, and needs 24-hour one-to-one care. In the past year, she has begun to lose her ability to eat and drink orally. She is now on the waiting list for a feeding tube so food and water can be carried directly into her stomach.

In the UK, our attitude to marijuana is at best inconsistent and at worst – as Billy Caldwell’s case shows – highly damaging. Its recreational popularity means politicians treat it as a social problem rather than a possible source of treatment for desperately ill people. Concerns about its function as a gateway drug, and evidence that it can cause mental illness in heavy users, have traditionally been at forefront of public debate.

Unfortunately, this has meant that its potential as a medicine has been neglected. As well as seizures, cannabis or substances derived from it have been shown to be helpful in alleviating pain and muscle spasms, and studies suggest it may also be a useful component of cancer therapy. The Royal College of Nursing has voted in favor of legalizing marijuana for medical purposes. Many MPs are of the same opinion – a 2016 report by the all-party parliamentary group on drug reform called the UK’s refusal to recognize the medical value of cannabis “irrational”. Many US states now allow the drug’s medical use, as does Canada. Germany legalized cannabis for medical purposes last year.

Two cannabis-derived prescription drugs – Sativex, licensed for multiple sclerosis, and Nabilone, for nausea associated with cancer treatment – are available in the UK. More may follow. But the process of developing a new drug and getting it approved is a lengthy and expensive one. Each one of Sia’s seizures damages her that little bit more.

What we would like to see is a more compassionate approach to the medical use of cannabis – one that accepts it is going to be some time before it is legally available in the UK, but acknowledges that there are patients for whom it is a lifeline. For these people, it should be easily accessible, on prescription, and should not require a stressful and highly complex application for a special license. No mother should have to go to the lengths that Charlotte Caldwell did just to keep her son well. No one should be forced to break the law to access a medicine that could alleviate their suffering or save their life. Currently anyone found possessing cannabis in Britain can be sentenced to up to five years in prison.

A review is welcome, and I sincerely hope it leads to a rethink. A longstanding policy has indeed been revealed to be inappropriate, and it must change.