In the past few years, we have seen some signs of hope when it comes to people accessing medical cannabis in the United Kingdom.
Thanks to the dedication of campaigners like Charlotte Caldwell, who has been a vocal advocate of the need to further explore cannabis as a treatment for people suffering from severe refractory epilepsy. As you will likely be aware, Charlotte has not shied away from the issues surrounding the treatment of her son, Billy, but her desire for change goes far beyond the confines of her own family and has led to a change in the law in the UK.
Things are moving in the right direction but there are still a number of obstacles which need to be safely navigated.After Charlotte was stopped by customs officials and Billy’s medicine was seized, a change in the law meant that he could potentially legally obtain cannabis from private suppliers but this would come at a cost of more than £6,000 per year.
Concerned that this would be an impossible task, Charlotte applied for funding via the Refractory Epilepsy Specialist Clinical Advisory Service RESCAS to cover the costs of Billy’s treatment. Sadly, this was set to be a drawn-out process which left Charlotte facing mounting costs while she waited to hear if her application would be successful or not. In a bold and powerful statement, Charlotte expressed that “no parent should have to risk prison or be forced to pay unaffordable sums for a medicine that prevents their child from having life-threatening seizures.”
Incredibly, in a wonderful show of support, the manufacturer of Billy’s medicine ‘gifted’ the private prescription at no extra cost to the family until official funding could be secured, which meant that Billy could live a more comfortable life by significantly reducing the frequency and intensity of his seizures. Following on from our last issue, we have received additional news that Charlotte and her associates have found further success in response to her work with the ‘I AM Billy’ campaign. Previously, she has discussed the difficulties associated with acquiring a prescription for medical cannabis in the UK and outlined how the subsequent financial implications can be a crippling burden for those affected.
Whilst pushing for more to be done to support those most in need, Charlotte reached out to a number of manufacturers who work within the medical cannabis industry. She asked them to show a similar level of solidarity with patients who are in the process of being assessed to receive their prescription through the National Health Service by offering to supply their cannabis for free until their application is approved or denied. In many cases this process can take up to eight months and leaves those affected in an incredibly difficult situation. Just imagine having to make a decision that could potentially see someone suffering simply because you don’t have enough money to afford a viable and effective treatment.
Current estimates suggest that there are at least 75 families in the UK who can potentially benefit from this scheme during their period of application and assessment. As it stands, three key companies are providing medicine for around 30 patients in the UK but there are believed to be another 45 patients who are accessing prescriptions privately from five other companies.
In just one month of the campaign’s official start date, they have managed to gain the backing of Althea, Canopy Growth and Cellen, who all manufacture medical cannabis products for the treatment of epileptic children in the UK, when it comes to offers of support through gifting medicine during the RESCAS process. Joshua Fegan, CEO of Althea Group Holdings Limited, has expressed that his company is “extremely proud to be involved in a case as important as the I AM Billy Foundation” and indicated that they are “passionately committed to improving patient medical access pathways in the UK [in the hope of seeing] further enhancements of NHS funding programmes for medical cannabis.”
Similarly, the General Manager (International) of Canopy Growth Corporation has outlined that “supporting and facilitating patients’ access to medical cannabis is a critical element of [their] company’s vision to unleash the power of cannabis to improve lives.” Eric Bystrom, CEO of Cellen and Leva Clinic, released a statement explaining that “Leva Clinic is so proud to be able to provide life-saving medication to families and children with epilepsy and to work with RESCAS.
We are committed to ensuring the safety and efficacy of Medical Cannabis treatment is maintained and delivered to those in need.” Never one to rest on her laurels, Charlotte continues to work closely with a number of other manufacturers in the hope of gaining further support and has indicated that she has been impressed and encouraged by the positive conversations in relation to this issue
Billy and Charlotte continue to campaign and she is confident that they will continue to find companies who will support this incredible cause. Charlotte knows that “not all patients are as lucky as Billy, which is why I took up the mantle myself and went to the manufacturers to ask them for help. I am delighted to be able to secure such a potentially life-changing outcome for fellow paediatric patients.”Two Trustees of the I AM Billy Foundation, Steve Oliver and Matt Lawson (founders of The Canna Consultants), praised the success of the campaign so far by recognizing Charlotte’s hard work and dedication to the cause: “Charlotte’s ability to secure the agreement of these manufacturers to gift their medications to these children and families, who are being squeezed from all sides, with many having to decide whether they medicate one child or feed another, is a tremendous achievement from a mother driven by her desire to achieve equality for all children.
What we now call for are those clinics through whom the medications are delivered to show a similar commitment to those in great need and waive their fees, so that medication is genuinely ‘free at the point of use’ for these children and their families.”In the long-run, the hope is that “these manufacturer commitments will reduce the risk of expensive private prescriptions pushing families into debt and hardship, especially in tough times like these.” While there is no guarantee that every individual will be deemed eligible for support through RESCAS, Charlotte encourages anyone who thinks they may benefit to consider taking up the application process. “If your child us currently accessing medical cannabis for epilepsy via a private prescription, please do get in touch.
While I am unable to guarantee every outcome, my promise to you is that, as a mother previously in the exact circumstances that you currently find yourself, I and the Trustees of the I AM Billy Foundation will do all that we possibly can to support your child through the RESCAS process, completely free of charge.”
If you would like to apply to RESCAS, you will need to demonstrate a record of using a consistent medical cannabis product. If you believe that your situation could be assisted by this campaign then please visit https://iambilly.uk/rescas-2/ and complete the application form.