Back when we first got to know about Billy Caldwell and his mother, Charlotte, we could never have imagined how significant an impact cannabis would bring to their lives. After successfully campaigning to attain a first-of-its-kind prescription for cannabis on the NHS in the UK, which was finally awarded by Sajid Javid in 2018, they have not rested on their laurels and Billy’s quality of life now means he can do things nobody would ever have dreamed of.
Once upon a time Billy suffered with endless seizures that endangered his life daily and took away many of the opportunities for him to enjoy things that we take for granted. These seizures were relentless, countless prescribed medications had little-to-no-effect and doctors felt helpless to assist him. At one point, it was even suggested that there was no way to end Billy’s suffering without ending his young life. Charlotte Caldwell refused to accept this fate for her beloved son and instead sought out alternative paths of treatment. After extensive research and communicating with people around the world she came to the decision to try cannabis oil. The results were miraculous.
Billy’s condition became more manageable as the seizures became less frequent and less severe. As time went on and his dosage levels were balanced out, Billy’s standard of living improved dramatically to the point where he was often going weeks without a single seizure. Despite this incredible level of progress, one fact remained: Billy was being treated using substances that are classed as illegal in the UK. After campaigning relentlessly to find a legal route that would allow them to acquire his medicine from the Netherlands, the Caldwells had the prescription seized at the border by customs agents. Unperturbed by this, they continued to fight their corner until they were finally awarded with the prescription that would allow Billy to be treated legally. But that was only the first chapter of their story.
Since that day, both Billy and Charlotte have been motivated by their desire to help others who find themselves in similar situations to their own. Countless people in the UK could benefit from having safe, legal access to cannabis but there are still a huge number of obstacles that stand in their way. Despite the change in law in 2018, only a handful of patients have managed to obtain a prescription and the costs for those who have one are astronomical. It’s hard to imagine finally being given the green light to access something which could change your life and then being unable to afford it. This is something which they hope to change through the creation of the I Am Billy non-profit organization.
In order to raise awareness of their cause, Billy and Charlotte undertook a mammoth journey which saw them walking 1,000 miles from their hometown in Northern Ireland to Westminster in the heart of London. This would be a challenge for anyone, but to see Billy achieving this milestone is truly phenomenal. Their aim was to secure a meeting with the Health Secretary to discuss their proposals for a seismic shift in terms of cannabis research in the UK. Over the course of 19 days they met well-wishers galore who wanted to donate to the cause and also had the opportunity to meet with key figures to explain what they were hoping to achieve. Charlotte reflected on how refreshing it had been to meet people in positions of authority who were so supportive, sympathetic and amazed by Billy’s story. This included the Deputy Chief Minister of Jersey, Senator Lyndon Farnham, who was incredibly vocal in his support for pushing things forward to ensure that anyone who could benefit from cannabis as a treatment should be able to do so.
On the 14th of June, they arrived at their destination and were thrilled to find a group of people there to meet them who represented some of the companies that had supported them along the way. When they reached Leicester Square, they were welcomed by companies who came out to show their support in person including representatives from Grow Pharma and Northern Leaf among many others Medicinal. Charlotte expressed how emotional it was to finally meet people in person who she had got to know via email, phone calls and Zoom meetings.
Unfortunately, once they had reached their ultimate destination they were informed that nobody from the government was available to meet with them. After all their efforts this was obviously a huge disappointment, but they were still happy with their achievements and the fact that more and more people were becoming aware of what they were aiming to do. However, as they were returning to their campsite for the night, before returning home the next day, Charlotte’s phone pinged in her pocket and she saw an email which apologized for them being declined a meeting and indicated that a date had been set for them to meet with the Department of Health to allow them to outline their proposals. Their sense of disappointment evaporated into joy and you can imagine that they slept well that night after the excitement had died down
Both the Under Secretary of State and representatives of the Department of Health were set to be present at the meeting and Billy and Charlotte were both excited to present their solutions to the current situation. They were confident that their ideas offer a way to unlock the deadlock of NHS-funded medical cannabis prescription as their foundation will offer to carry out real-world evidence-based studies in order to gather data on the efficacy and safety of cannabis as medicine. Their proposals are supported by NIHR and the meeting aimed to seek approval by MHRA so that the research they conduct will be used as a means of providing crucial information for doctors so that they can feel confident in prescribing to their patients. On top of this, the foundation will use donations to relieve the financial burden that would otherwise be placed on the families of the many thousands of other patients like Billy in the UK and the Channel Islands.
Charlotte plans for their foundation to set up clinics around the UK to offer support and guidance to those who could benefit from a cannabis prescription and she and her team have of partners have been working tirelessly to put things in motion. They are currently convening with almost 40 doctors and researchers who will carry out the studies and process the relevant data and she was keen to stress that “our solution is one where we will work with the Dept. of Health and the relevant government authorities in a collaborative manner, not a confrontational one.”
She went on to explain that: “This is a historic step forward and I am incredibly grateful to Jo Churchill and her officials for agreeing. This solution can and will save lives while gathering much needed data for our wonderful NHS. I know it has saved Billy’s life, and I am confident that these medicines can save many more. I am happy that the proposed real-world evidence studies can potentially bring relief to patients, including more children with childhood epilepsy, who have to endure the financial burden of private prescriptions if they are lucky enough to receive one. I am extremely grateful to the Under Secretary of State for agreeing to meet and grateful also to the campaign funding partners who are doing so much to support our efforts.”
During our conversation I said to Charlotte that this would be a great opportunity for both sides as it would allow the UK to get up-to-speed with the reality of cannabis and its potential to help people without the government having to ‘do the leg work.’ Charlotte then said that her and Billy have “already done the leg work on our way to Westminster, so it makes sense that we keep up the pace. No point in stopping now!”
We caught back up with Charlotte after the meeting had finally taken place and, incredibly, all of their gallant efforts were not in vain. The I Am Billy foundation managed to secure a historic agreement with the DHSC and the NIHR to conduct real-world studies into the safety and efficacy of cannabis based medicines, starting with a focus on patients suffering from Billy’s condition, Refractory Epilepsy. Following this landmark decision, a Conservative MP, Heather Wheeler, explained that she “wholeheartedly welcome the historical news that DHSC has agreed NIHR will work with I am Billy Foundation, investing in Real World Evidence Studies to unlock the deadlock of our wonderful NHS prescribing Cannabis based Medicine. I commend Billy and Charlotte for their determination to make this happen, in particular for groups of patients like Billy with refractory Epilepsy who are already accessing Cannabis based Medicine in the private sector. This non-profit concrete proposal is deliverable and undoubtedly will not only gather much needed data but relieve the financial burden of these chronically ill patients”.
After everything that Charlotte and Billy have been through, this is incredible news. Charlotte went on to express that Billy and I are humbled and filled with gratitude” after their meeting delivered such amazing results. “Everyone agrees that this is a problem we can solve together and I look forward to collaborating with so many fantastic people as we work towards an urgent solution. I am a mother of a patient, with real-life experience of how incredible the effects can be. This medicine has saved Billy’s life and I am confident that these medicines can save many more”.