Sixty million people around the world live with epilepsy, including over 500,000 in the UK. Around a third of patients don't respond to traditional anti-epileptic pharmaceutical drugs – however, as a wealth of anecdotal evidence amasses, medicinal cannabis is now being considered as a viable alternative treatment.
In the UK, this debate was being held on the fringes prior to this summer, until the plight of Billy Caldwell – a severely epileptic boy who had been prescribed cannabis oil on the NHS, before the Home Office confiscated his medicine – demonstrated the inhumanity of the UK's drug policy and led to concrete steps being taken towards change. Nevertheless, the interim licensing system has faced widespread criticism, and countries such as Holland, Canada and the US remain much further ahead.
Meanwhile, two British sisters – who both live with epilepsy on opposite sides of the Atlantic – are making a film, Separating the Strains, juxtaposing their own contrasting experiences with the condition to highlight the ongoing challenges people with epilepsy face.
At the V&A Museum in west London I met with co-director Caroline Sharp, while one of the sisters, DJ and co-director Chelsea Leyland, video-called from the States.
VICE: How have yours and your sister's lives been shaped by where you live?
Chelsea Leyland: So much of it is effectively determined by our postcode – like many parallel stories. Living in New York, I am able to obtain a medicinal marijuana card, go to a physician and have an open, honest conversation where I can be prescribed my medicine. Whereas my sister is in full-time care in the UK, has never used medicinal cannabis, because she doesn't have access to it, and is still having seizures despite taking tons of pharmaceutical drugs.
When did you start working to increase awareness around epilepsy?
I started doing it a few years ago when I was still on pharmaceutical medication, at which point I knew nothing about medicinal cannabis. Growing up, my older sister, Tamsin, suffered pretty severely, having around ten to 20 seizures a day, but sometimes she would have 70 in a night and had to be hospitalised. So epilepsy had been a huge part of my life, even before I myself was diagnosed at 15.
I started by organising events, talks and fundraising for the Epilepsy Society – where Tamsin lives – but now I'm hoping that, through this film and the press from my advocacy work, I can really start reaching a wider audience beyond everyone I was fortunate enough to reach initially through the platform from my DJ work.
Was it a shock to be diagnosed so late in your life?
Yes, absolutely. I was always the "normal", "healthy" child. It was quite strange to believe I had been diagnosed with a type of epilepsy that develops in your teens. It was also sort of hard to stomach, because I'd lived up to that point without showing any signs of having epilepsy. And then I was on medication for a while, which came with an array of difficult side effects – insomnia, anxiety, pretty bad depression, suicidal thoughts for a lot of my teenage years. However, the transformation in both my physical and mental health was so spectacular after I began using medicinal cannabis that I just wanted to shout from the rooftops.
And that's why you decided to begin making this film?
Exactly. I felt that I could get the message out to as many people as possible in this way. So many people started to write to me through social media about being epileptic, about using medicinal cannabis, asking me which brands I use, where I sourced my cannabis, whether I used CBD or THC, what medication I had been taking and whether it was true that I'd come off it. I became quite overwhelmed as the messages poured in, so I thought that a film was the best way these questions could be answered. I felt there was a tremendous hunger for people to learn more.
How have you viewed developments in the UK regarding the law and changes to cannabis's scheduling?
It's incredibly positive. When we began this project we had no idea there would be some change happening. It's step one, and although it's exciting, there's still a long way to go – the situation we're in remains phenomenally frustrating. As someone who lives here where it is medicinally legal, it's absolutely ludicrous to think that we're still in this backward position in the UK.
How would you describe the structure of the film?
Caroline Sharp: The film contrasts the experiences of the two sisters – in the US, where the industry is pushing forward, although it does have its own particular issues; and in the UK, which has fallen behind. Chelsea is very brave about it, but Tamsin's health is deteriorating and, for her, it's a race against time to get access to medicinal cannabis. It's not just a story for us, it's deeply personal. However, the film is embedded in the wider movement because getting all patients the right to access effective medicines really matters.
What will the main takeaway be for viewers?
They'll see two sisters on their own personal journeys navigating their two different types of epilepsy through two dissimilar treatment options. You can see how different their lives might have been under other sets of regulations, and you'll see how arbitrary they can be.
What do you want people to come away from the film thinking?
This isn't a generic attack on the pharmaceutical industry – however, we're at a unique position in time, where people are able to make informed decisions, with more research being published on the vast array of things cannabinoids can do and affect. That's why we want to provoke thought and get people thinking for themselves. We want people to question what it actually means when something is a drug or a medicine; who says that, who determines that distinction, why have they said it and what governs that regulatory decision? We want people to come out with a greater understanding of the science behind cannabinoids so they can have a better informed discussion and feel more empowered as a patient to have a say in their treatment options.
The team are currently crowdfunding to help with the production costs of the film.