Three medical cannabis manufacturers are backing a call from the I AM Billy Foundation, led by campaigner Charlotte Caldwell, to supply free cannabis-based medicinal products to children with epilepsy.
As many as 75 families of severely epileptic children could benefit from free private medicines – saving each patient up to £6,000 while waiting for NHS funding. The amount is the equivalent to eight months’ treatment.
Medical cannabis campaigner Charlotte Caldwell, whose epileptic son Billy helped change the law on medical cannabis, has secured the free-to-access treatment.
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The call has been backed by medical cannabis manufacturers Althea, Canopy Growth and Cellen – all of which manufacture products that are prescribed to epileptic children in the UK – and comes a month after Caldwell launched a new campaign to mark the fourth anniversary of her son Billy’s medical cannabis being confiscated by Heathrow Airport customs officials, an event which led politicians to change the law to allow doctors to prescribe it.
Caldwell commented: “No parent should have to risk prison or be forced to pay unaffordable sums for a medicine that prevents their child having life-threatening seizures.”
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Caldwell has called on medical cannabis manufacturers to supply free medicine and give other child epilepsy sufferers the support that Billy received by offering free access to vital medicine during the RESCAS process. She is urging patients to visit the I AM Billy website for more details and to register their desire to pursue gifted medical cannabis products.
RESCAS was set up in 2020 following a legal challenge that Caldwell brought against the UK government. It provides a much-needed route to NHS-funded medical cannabis and other alternative treatment options for refractory epilepsy patients under the age of 18.
During the campaign, Caldwell has sought to reach out to all medical cannabis manufacturers to request support for patients during RESCAS applications.
Alongside Althea, Canopy Growth and Cellen, Caldwell continues to have positive conversations with several other manufacturers and is confident that more companies will agree to contribute in due course.
The medicines produced by these three manufacturers are currently prescribed to approximately 30 patients in the UK via a private prescription. It is estimated that there is approximately a further 45 patients being prescribed medical cannabis from up to five other manufacturers, all of whom Caldwell has invited to gift their treatments.
Caldwell added: “During the period when Billy was being considered for NHS funding, I was fortunate enough to have his medical cannabis gifted by the manufacturer who was supplying it via a private prescription.
“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 to help. I am delighted to secure such a potentially life changing outcome for fellow paediatric epileptic patients.
“No parent should have to risk prison or be forced to pay unaffordable sums for a medicine that prevents their child having life-threatening seizures. While funding via RESCAS can still take up to eight months to be approved, I am confident that these manufacturer commitments will reduce the risk of expensive private prescriptions pushing families into debt and hardship, especially in tough times like these.
“If your child is 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.
“Billy and I continue to lobby the other medical cannabis manufacturers and I am confident that this is just the start for patient access to medical cannabis via the NHS.”
CEO of Althea Group Holdings Limited, Joshua Fegan, commented: “At Althea we are extremely proud to be involved in a cause as important as the I AM Billy Foundation.
“We are passionately committed to improving patient medical cannabis access pathways in the UK. We hope that our support for the foundation will benefit many patients just like Billy, and that it leads to further enhancements of NHS funding programmes for medical cannabis.”
General manager (international) of Canopy Growth Corporation, Paul Steckler, commented: “Supporting and facilitating patients’ access to medical cannabis is a critical element of Canopy Growth’s vision to unleash the power of cannabis to improve lives.
“I’m proud that through our Spectrum Therapeutics medical division, we are able to provide compassionate access to patients that require these medical cannabis products while continuing to advocate for the critical regulatory advancements in Europe that will further improve access to high-quality medical cannabis products in the near term.”
CEO of Cellen and Leva Clinic, Eric Bystrom, commented: “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, giving us new data to help this campaign’s trajectory.”
Trustees of the I AM Billy Foundation and founders of The Canna Consultants, Steve Oliver and Matt Lawson, commented: “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 this great need and waive their fees, so that the medication is genuinely “free at the point of use” for these children and their families.”
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