Last week, Billy Caldwell, a severely epileptic twelve year old boy, had his cannabis oil confiscated at Heathrow airport
In 2017, Billy became the first person in the UK to be prescribed the oil but in May this year his GP did not renew his prescription, forcing his mother, Charlotte, to seek treatment in Canada.
Billy suffers up to 100 seizures a day but these dramatically reduce in frequency while taking the medication, with Ms Caldwell saying the results are “miraculous".
After Billy's seizures intensified, the Home Secretary, Sajid Javid, approved the use of the medicinal oil after doctors declared it a medical emergency, prescribing a special 20-day treatment licence.
The oil contains two active substances called cannabinoids – the psychoactive Tetrahydrocannabinol (THC), which is currently illegal in the UK and cannabidiol (CBD), which has legal status.
The Medicines and Healthcare products Regulatory Agency regard cannabis products used for medical purposes as medicines, but the oil is yet to be licensed in the UK with attainment only possible through a doctor's prescription in special circumstances.
However, there have been cases of legalised cannabis-based drugs in the UK before. Sativex, which contains both THC and CBD, is licenced in the UK to treat Multiple Sclerosis but can be prescribed off-label to treat other diseases.
Another licensed treatment is Nabilone, which holds a synthetic cannabinoid substitute of THC, and can be given to cancer patients to help relieve nausea during chemotherapy treatment.
Sir Michael Penning MP, the proposed Chair of the new All-Party Parliamentary Group of Medical Cannabis Under Protection said “It's bizarre and cruel that we have a system that allows the medical use of strong opiates, but bars the medical use of cannabis", calling for a fundamental reform of the current system.
Today, the Secretary of State for Health and Social Care, Jeremy Hunt, has promised a review on the law on medical use of cannabis will be carried out quickly, stating the Government was not “getting the law on this kind of thing right".
Is the current landscape fit for purpose?
The Brain Tumour Charity believes it is imperative for people affected by a brain tumour to have the best quality of life and cannabis oil may help achieve this.
Those suffering with a brain tumour use cannabis oil products for a variety of reasons including the side effects of treatment, seizures and anxiety.
Current cannabis oil research shows it has relatively little side effects in comparison to other medications used to alleviate symptoms.
For example, evidence suggests there is a role for cannabis oil in treating refractory epilepsy and inhibits chemotherapy-induced neuropathic pain.
We will be supporting for people to have access to cannabis oil, as well as any other treatments and therapies, as quickly and as easily as possible, so we can improve the quality of life of those suffering with a brain tumour.
Our patient choice survey, which surveyed almost 400 people affected by a brain tumour, has shown the community overwhelmingly in favour of patient choice in treatment.
One respondent echoed many other replies: “Everyone should have the choice to every type of treatment. Clinical trials should always be available to patients should they wish to try it.
“Surely everyone has the right to live their life in whatever way they choose"
Over 96% of respondents believe they have the right to consider trying an experimental treatment, even if may not have a better outcome than standard treatment.
Here at The Brain Tumour Charity we are committed to ensuring patients have access to all types of treatments, including clinical trials, and not just ones that have been regulatory approved.
However, some can take over a decade to come onto the market, where thousands of lives will be already lost.
All too often patients are denied access to drugs and treatments which can significantly reduce pain and improve quality of life.
Our survey found a high rate of healthcare professionals consistently not engaging in conversations with their patients concerning alternative or off-label treatments.
Patients, too, feel awkward initiating conversations around access and availability of clinical treatments.
At The Charity we want our community to feel empowered in everything they do which is why we will support our patients in their right to choose their own treatment and drug options, so that we can improve the quality of life of all individuals affected by a brain tumour.