A young boy and his single mother are in the midst of a 1,000-mile walk across the United Kingdom, a journey they are making to raise awareness and funds to provide medicinal cannabis to chronically ill patients. After leaving their home in Northern Ireland, Charlotte Caldwell and 15-year-old Billy, who is challenged by disabilities including refractory epilepsy and autism, have crossed by ferry to Great Britain on an expedition scheduled to end at the Houses of Parliament at Westminster on June 14.
The Caldwells have three primary goals in mind as they journey across the U.K. The first is to raise awareness and funds for the nonprofit I Am Billy Foundation to provide financial assistance to patients who need support accessing cannabis medicines. The walk is also serving as a call to action for the U.K. government to support evidenced-based studies on the efficacy and safety of cannabis therapies, as well as a public invitation to Matt Hancock, the U.K.’s Secretary of State for Health and Social Care, to meet for a roundtable discussion on the issue.
The Boy Who Changed The Law
Billy and Charlotte made international headlines in 2018 when her struggle to obtain a cannabis-based medicine for her son, who was enduring up to 400 seizures a day at the time, led to the legalization of medical cannabis in the U.K. And they haven’t been forgotten since then, it seems. Only seven days into their adventure, the pair have already exceeded their initial goal of raising £5,000 (about $7,054) for the foundation, prompting them to set their sights on £15,000 as a stretch goal.
“It’s amazing,” Charlotte Caldwell tells me in a virtual interview, adding that they are “humbled by the support that the British nation is showing us.”
It’s money that’s sorely needed. Despite the legalization of medicinal cannabis in the U.K., therapeutics derived from the plant are still not routinely covered by the National Health Service. Instead, patients are required to obtain a private prescription to access their medicine, at a cost of up to £2,000 per month or more. In an op-ed published by the political magazine The House, Conservative Party MP Alberto Costa noted that so far, the 2018 legalization of medical cannabis in the U.K. has benefited an appallingly low number of NHS patients.
“Nearly three years on, what should have been a watershed moment has resulted in very little change for these affected families,” Costa wrote. “It is to be deeply regretted that, by all accounts, only three NHS prescriptions have been issued across our country for the type of medical cannabis that is life transforming for the children affected.”
Patients Left In The Lurch
The lack of action is having a devastating effect on chronically ill patients in the U.K. Just last week, Rachel Rankmore of Cardiff, Wales revealed that she could no longer afford the £2,000 a month for cannabis oil for her 19-year-old son Bailey, who has a rare form of epilepsy known as Lennox Gastaut Syndrome. The Rankmores have tried dozens of traditional pharmaceutical treatments, but they were either ineffective or caused unacceptable side effects. Cannabis is the only effective medicine, but for now, Bailey must go without and has “no quality of life.” She is beseeching the NHS to cover the cost.
“It’s hell living with epilepsy like this and very cruel to hold funding back for this treatment. We can see it works. We know it works,” Rachel told WalesOnline last week. “Without the oil Bailey has really gone downhill. It’s heartbreaking. Bailey isn’t playing anymore, he’s just sitting, not eating, or engaging for more than an hour a day. He went to school on Wednesday but just slept all day there.”
Charlotte Caldwell says that patients and families from across the U.K. have contacted her for help securing medicinal cannabis. She has heard from thousands of sick people who do not understand why they can’t obtain a legal and life-changing medication.
“People just keep calling me and messaging me, you know, who desperately need access to this wonderful medicine,” Charlotte says, adding that the patients are the inspiration for the challenge that she and Billy have taken on.
Charlotte and Billy’s trip across the U.K. is giving them the opportunity to meet some of these patients in person. After setting out from their home in Northern Ireland they headed to Belfast, where they caught the ferry to Liverpool. From there they walked to Birmingham and are currently on their way to Oxford before making the trip to Southampton. Then they’ll take to sea again for a visit to the island British Crown Dependencies of Jersey and Guernsey, where Charlotte knows approximately 750 patients who would likely benefit from medicinal cannabis.
“These are vulnerable, chronically ill, NHS patients with a wide spectrum of conditions like MS, chronic pain and epilepsy, who are from some of the most deprived areas of our society,” says Caldwell. “And the only way they can access medical cannabis is via private prescription and they are struggling on a monthly basis to pay for this life-saving medicine.”
Research Is Key
The hesitancy of the NHS to provide prescriptions for medical cannabis stems in part from its refusal to accept global clinical data on efficacy and safety. As a result, the Caldwells are calling on the U.K.’s National Institute of Health Research to fund domestic clinical trials on the medicinal use of cannabis.
“Our solution is real-world evidence studies carried out in an I Am Billy non-for-profit clinic,” she says, “which will be the first of its kind in the UK funded by the NIHR.”
Charlotte says that people have been coming out to walk with Billy, including a visit from Labour Party MP Peter Dowd in Liverpool, making the trek across the U.K. an even more rewarding experience. And while she says that he doesn’t fully understand the gravity of their undertaking, the experience is a joyful one for Billy.
“He’s feeling humbled and privileged that he is able to get up and walk a thousand miles for thousands of chronically ill patients due to the fact that he has access to medical cannabis,” Charlotte says.
“And I’m a very proud Mummy,” she adds.
Charlotte has sent a letter to Hancock to request a meeting with the health secretary when she arrives in London on June 14. She hasn’t yet received a reply, but if her invitation is accepted, she plans to call for swift and sure support of medical cannabis for NHS patients. And she is adamant about the response she expects to receive.
“What I need to be hearing from Matt Hancock,” she says, “is a three-letter word. ‘Yes.’”