At least a dozen children in the UK are facing the loss of the cannabis-based drugs used to treat their life-threatening conditions, and their parents are struggling to find a new doctor to write prescriptions to keep their children alive obtain.
British Home Secretary Sajid Javid announced three years ago that cannabis-based drugs would be made available to some patients. After consulting medical experts, Javid said that medical cannabis products were being rescheduled and that clinical specialists would be allowed to prescribe them to patients “with exceptional clinical needs.”
The news was a welcome relief for Robin Emerson of Belfast, whose young daughter Jorja has severe epilepsy. She suffered up to 30 seizures a day and was admitted to the intensive care unit twice. Jorja was one of the first patients to be allowed to use medicinal cannabis in 2018 and received a prescription from Dr. Adelaida Martinez, a pediatric neurologist at Portland Hospital in London. Before Jorja started cannabis medicine made in Canada, she couldn’t sit up or turn around on her own. But with the treatment, Jorja recently took her first assisted steps on a treadmill.
Robin Emerson and his daughter Jorja.
Photo courtesy Robin Emerson
“It was about five and a half weeks before we saw any improvement – but once we hit that mark it definitely got better and better, to where we are three years later,” Emerson told The Independent. “Jorja has been doing well since then. She is free from seizures, she is a happy, happy child – it has completely changed our lives. “
Martinez recently retired, however, and the families of her cannabis patients couldn’t find another specialist to take their place. The situation has left the Emersons and a dozen or so other patients for whom she wrote prescriptions unable to obtain much-needed medicines. Additionally, Emerson says only three patients received a medical cannabis prescription from the UK’s National Health Service, leaving the remaining families to pay up to £ 2,000 a month for the drug.
Father urges health minister to change the law
To address the problem, Emerson is calling on Javid, now UK Secretary of State for Health and Welfare, to change the law to allow general practitioners to also write prescriptions for medicinal cannabis. However, the government has stated that clinical trials of cannabis medicines must be completed before general practitioners can prescribe. Emerson acknowledges that research is crucial, but claims that it is neither realistic nor safe for children already being cared for by cannabis-based medicine to forego treatment while large clinical trials are in progress.
Sajid Javid, British Secretary of State for Health and Social Affairs. (Image credit by BEN … [+]
AFP via Getty Images
“It is deeply unfair that dozens of children with severe and drug-resistant epilepsy continue to be denied access by the NHS to the only medical supplies that can control and treat their serious health conditions,” Emerson said in a statement to the press . “The lives of patients and the hopes of dozens of families depend on government opening up wider access.”
The plight of Jorja and other young patients in the UK who are struggling to get the medical cannabis treatments they need has sparked some debate in Parliament but has given rise to little action. During a debate in the House of Commons in September, Liberal Democrat MP Christine Jardine urged Javid to “keep the promise” he made in 2018.
“I’m not a medical professional, but I’ve seen the real difference these treatments can make to a person’s life and the financial burden currently placed on families to provide them,” she told the Sunday Mirror.
After another debate in the House of Commons last week, Emerson renews his call for action from the Minister of Health. Without a new prescription, Jorja will use up her current supply of medication in less than three weeks, a scenario that could endanger the young girl’s health.
“The situation is desperate,” he said. “I urge the Minister of Health to resolve this impasse by clarifying the existing guidelines and ultimately allowing general practitioners to prescribe them to ensure that this life-saving treatment is not withdrawn.”