An expert group is to devise guidelines to provide clarity for doctors and patients on the safe use of cannabinoid derivatives to treat people with severe epilepsy at a time when debate on its merits is high on the political agenda.
While some cannabinoids showed promise in the treatment of severe epilepsy, others were “inadequately tested and known to be potentially harmful”, factors that had to be considered when “a new drug is used in a child’s developing brain”, said Dr Colin Doherty, consultant neurologist.
Dr Doherty, who heads up the National Clinical Programme for Epilepsy, said available evidence showed some cannabinoids held promise, particularly in children with Dravet Syndrome, a rare and severe form of epilepsy that begins in infancy.
Dr O’Doherty, speaking on behalf of the national epilepsy programme’s clinical advisory group, said there was emerging evidence for the use of a drug called Epidolex in forms of severe epilepsy. He said it was expected the drug will be available for compassionate use in 2017 through a Government-sponsored access programme for those with severe epilepsy who have failed other treatments.
However Vera Twomey, whose seven-year-old daughter Ava has Dravet Syndrome, said a compassionate access programme “was not going to happen” because doctors in Ireland were not comfortable signing off on use of cannabis for medicinal purposes. She said doctors she had spoken to wanted to have “the security of legislation” before any such sign-off. Furthermore, there were no doctors with the specialist training to whom patients such as Ava could be referred for medicinal cannabis treatment, Ms Twomey said.
“The only possible solution is legislation. It will free neurologists to get the training necessary to treat people like Ava with medicinal cannabis. Of the doctors we have spoken to, the view is that compassionate access is completely unworkable,” she said.
Ms Twomey, from Aghabullogue, Co Cork, has long campaigned for her daughter to have access to the treatment she believes can help control her seizures. Recently she walked from Cork to Leinster House to highlight her daughter’s plight. Health officials have consistently said her application for cannabis oil treatment must be signed off by her daughter’s consultant, but Ms Twomey said she understands why the doctors feel unable to do so.
Ms Twomey wishes for her daughter to be able to avail of THC, a cannabis derivative she says is the treatment shown to be most effective in helping her daughter’s seizures. However Dr Doherty describes THC as having “potentially harmful psychoactive effects”.
Ms Twomey plans another protest outside the Dail on March 29 “to ask the Government peacefully and quietly to change the legislation in the speediest manner possible as they have shown themselves capable of doing on other issues, such as the banks”, she said.
Meanwhile, the expert group tasked with drawing up guidelines “will meet shortly and begin this work”, according to a statement yesterday by the Royal College of Physicians of Ireland.
The RCPI said the main barrier to the prescribing of cannabis derivatives for epilepsy “is the lack of clinical evidence of its long-term efficacy, as well as lack of data on long-term side effects”.
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