A least a dozen children in the U.K. face the loss of the cannabis-based medicines used to treat their life-threatening medical conditions, leaving their parents scrambling to find a new doctor who will write prescriptions to keep their kids alive.
Three years ago, U.K. Home Secretary Sajid Javid announced that cannabis-based medicines would be made available to some patients. After receiving advice from medical experts, Javid said that medicinal cannabis products would be rescheduled, and clinical specialists would be permitted to prescribe them for patients “with an exceptional clinical need.”
The news was welcome relief for Robin Emerson of Belfast, whose young daughter Jorja has a severe form of epilepsy. She endured up to 30 seizures per day and was twice admitted to the intensive care unit. Jorja was one of the first patients to be granted permission to use medical cannabis in 2018, receiving a prescription from Dr. Adelaida Martinez, a pediatric neurologist at London’s Portland Hospital. Before beginning the cannabis medicine, which is manufactured in Canada, Jorja was unable to sit up or roll over on her own. But with the treatment, Jorja recently took her first assisted steps on a treadmill.
“It took about five and a half weeks for us to see an improvement – but once we hit that mark things definitely got better and better to where we are three years later,” Emerson told The Independent. “Since then Jorja has been thriving. She is seizure-free, she is a smiley, happy child – it’s completely transformed our life.”
However, Martinez recently retired, and the families of her cannabis patients have been unable to find another specialist to take her place. The situation has left the Emersons and about a dozen additional patients for whom she had been writing prescriptions without a way to obtain the medicine they so desperately need. Additionally, Emerson says that only three patients have received a medical cannabis prescription from the U.K.’s National Health Service, leaving the remaining families to pay up to £2,000 per month for the medicine.
Father Calls On Health Secretary To Change Law
To address the issue, Emerson is calling on Javid, who now serves as the U.K.’s Secretary of State for Health and Social Care, to change the law and allow general practitioners to also write prescriptions for medical cannabis. But the government has stated that clinical trials of cannabis medicines must be completed before GPs will be permitted to prescribe. Emerson acknowledges that research is vital but maintains that it is not realistic or safe for children already being sustained by cannabis-based medicine to forgo treatment while extensive clinical trials are undertaken.
“It is deeply unjust that dozens of children suffering from severe and drug-resistant epilepsy continue to be denied NHS access to the only medicinal aids that can control and manage their serious health conditions,” Emerson said in a statement to the press. “The lives of patients and hopes of dozens of families are dependent on the Government to unlock wider access.”
The plight of Jorja and other young patients in the U.K. who are having trouble obtaining the medicinal cannabis treatments they need has prompted some discussion, but so far little action, in Parliament. During a House of Commons debate in September, Liberal Democrat MP Christine Jardine called on Javid to “fulfill the promise” he made in 2018.
“I am not a medical expert, but I have seen the real difference these treatments can make to a person’s life, and the financial burden that is currently being placed on families to provide them,” she told the Sunday Mirror.
After another round of debate in the House of Commons last week, Emerson is renewing his call for action from the health secretary. Without a new prescription, Jorja will exhaust her current supply of medication in less than three weeks, a scenario likely to put the young girl’s health in jeopardy.
“The situation has become desperate,” he said. “I urge the Health Secretary to resolve this impasse by clarifying existing guidance and ultimately, enabling GPs to prescribe, to ensure this life saving treatment is not withdrawn.”