As stories of two boys highlight the challenges faced by families looking for appropriate therapy for their children’s epilepsy, the search for accessible medical cannabis continues. The insightful moves of such families show the challenges associated with acquiring medical cannabis in the post-Brexit era. They also prove that change is desperately needed.
Our article examines the difficulties families encounter as well as potential solutions to make it simpler for patients to obtain medical cannabis.
Medical cannabis: desperate pursuits for epilepsy relief
The difficult battle against treatment-resistant myoclonic-atonic epilepsy, also known as Doose syndrome, is fought by Murray Gray, an 11-year-old from Edinburgh, Scotland, and Ben Griffiths, a 14-year-old from a comparable situation. Their experiences reveal a terrible scenario. Sometimes people have to look for alternative remedies when traditional meds don’t work.
The struggle starts when established therapies are rejected. Murray and Ben tried numerous drugs, such as sodium valproate, ketamine, and steroids, but none of them provided any relief. Their moms were so desperate that they were willing to try cannabis-based therapy as a last resort. Because there were no scientific studies for these medicines, the UK NHS created major hurdles that had prevented patients from accessing them.
The mothers took matters into their own hands because they were fed up with the NHS’s inaction. They set off on a smuggling trip to the Netherlands in order to acquire Bedrolite and Bedica. These are cannabis oils coming from that country. Both had shown promise for treating epilepsy sufferers.
Post-Brexit life: a costly route towards medical cannabis
Costly private prescriptions are required for some cannabis-based treatments. The financial strain on families is at the core of the problem. Many people find it impossible to receive consistent treatment due to the high costs involved. Patients’ access to the potential advantages of medical cannabis frequently comes with high expenses, which act as hurdles.
A fresh set of difficulties emerged with the start of Brexit. Murray, Ben, and numerous others were left stranded when the importation of medicines from the Netherlands was made difficult by Britain’s exit from the EU market. An advocacy group called Epilepsy Action calculated that this unexpected change left about 40 children without access to essential medications. The sudden end to critical care raises concerns about the healthcare system’s readiness for such events.
Murray and Ben’s moving stories captured the public’s attention and generated lobbying initiatives. Families and their allies used media outlets to gain sympathy and draw attention to their situation. As a result of these stories, the UK Prime Minister and Health Secretary received direct requests for action. Although temporary arrangements were made to guarantee supplies, the problems still exist.
How to facilitate access to medical cannabis?
The experiences of Murray and Ben show how urgently those in need need to have access to medical cannabis. Several actions might make this process easier. First of all, faster approval process for cannabis-based therapies may help patients have access to them earlier.
What is more, creating government programs or subsidies could lessen the financial strain on families and guarantee that patients receive standardised care. Additionally, the British medical community should review its recommendations for using THC-based substances on children. Making better decisions can come from learning from global experiences. The healthcare system could gain from working with international partners and exchanging information on the effectiveness of cannabis-based medicines. Especially, whilst real-world evidence results should be available now.
Finally, establishing a fund with the sole purpose of giving away or subsidising medical cannabis could be a lifesaver for those struggling to make ends meet.
The stories of Murray Gray and Ben Griffiths highlight the urgent need for improved access to medical cannabis, especially for people with treatment-resistant epilepsy. Even while difficulties still exist, these experiences highlight how urgently policies, rules, and healthcare practices need to change. It is obvious that prompt, compassionate action is necessary to guarantee that medical cannabis is easily accessible to those who need it most as families like the Grays and Griffiths continue to travel a difficult route for the well-being of their children.