A Scottish mom is calling on the government to help with the costs of her son’s “life saving” cannabis medication after claiming the price for the medicine is “spiraling out of control.”
Lisa Quarrell said she is paying out more than £1,500 every 28 days for Bedrolite, a cannabis-based oil that prevents her 11-year-old son from having dangerous seizures. Quarrell said the medication was half that price at £750 just four years ago. Due to his rare form of epilepsy, Quarrell’s son suffered from up to 20 seizures a day for six years.
Quarrell said the family has had to spend £80,000 over the years to afford twice-daily administrations of cannabis oil under their son’s tongue to treat his seizures. The family has been supported through donations but knows they “won’t last forever” and are calling on First Minister of Scotland, Humza Yousaf, to make good on his promise of looking into their case when he was elected.
“As Cole grows bigger he will need a higher dosage of Bedrolite, so the cost will go up. I cannot get over how kind people and businesses have been in fundraising over the years, it’s really overwhelming and has helped so much,” said Quarrell. “But it’s a sad fact, Cole is 11 years old, he’s not a ‘cute wee boy’ anymore. We need financial help for the foreseeable. There is no ‘end goal’ or ‘end point’ like an operation for example. People may start to get annoyed and stop donating. That’s really worrying as we need this drug to save his life.”
Although medical cannabis has been legal in the U.K. since 2018, only five prescriptions have been filled on the National Health Service, compared to the over 90,000 prescriptions offered through the private sector. There are currently only three licensed cannabis medications in the U.K.: Sativex, prescribed for spasticity associated with multiple sclerosis, Epidyolex for seizures related to certain rare forms of epilepsy and Nabilone which is used to treat chemotherapy-induced nausea and vomiting.
The NHS recently approved a new clinical trial that would test the efficacy of cannabis as a treatment for patients with chronic pain. Celadon Pharmaceuticals, a licensed producer of cannabis-based medicines in the U.K., will recruit 5,000 patients and believes the dataset created will help support doctor’s decisions to prescribe cannabis-based treatments and in time will lead to potential reimbursement by the NHS and insurance companies. The trial will use an inhalation device connected to a mobile app to collect real time patient data and deliver a defined dose of medical cannabis.
Other parents in the U.K. have called for the NHS to make cannabis-based medicines more widely available for patients and caregivers. Hannah Deacon, whose son Alfie previously suffered from hundreds of seizures a month and has one of the few prescriptions for cannabis-based medicine on the NHS, founded Medcan Family Foundation to help educate families on the potential use of cannabis-based medicines and help gain access to those treatments by working with politicians and healthcare providers in the country.
Karen Gray, a Scottish mother whose son also suffered from hundreds of seizures a day because of Doose Syndrome until getting access to cannabis-based medicine, said when their family doctor retired there was a chance they would also lose their access to cannabis-based medicines and would have to rely on a cannabis clinic rather than give their son the treatment at home themselves. Gray said if cannabis-based medicines were more widely available on the NHS they wouldn’t have had to worry about losing access or having to pay higher prices to continue the life-saving treatment for their son.
