Treating epilepsy using medicinal cannabis offers a “tantalising new horizon” for severe disabling seizures, but scientific studies are not yet “definitive”, a leading neurologist has said.
Dr Colin Doherty, a consultant neurologist at St James's Hospital in Dublin and a senior lecturer at Trinity College School of Medicine, was speaking at the Oireachtas health committee on Thursday, which was examining the merits of licensing of medicinal cannabinoids in Ireland.
Dr Doherty said there was growing evidence for the effectiveness of CBD (a cannabidiol oil derived from the cannabis plant) and initial studies were encouraging, but not definitive.
Dr Doherty said a framework could be created to possibly allow for people with severe forms of epilepsy, who were at risk of dying from seizures, to get access to CBD while waiting for further scientific evidence.
“We could probably come up with some way of administering the drug before the definitive evidence is across the line,” he said.
“It is possible to state with confidence that this drug will not work for everyone, will cause intolerable but probably not dangerous side-effects in a few, but for those for who it will work it may be life-saving.”
Issue of cost
Dr Doherty said an important issue that needed to be addressed was the drug’s cost. “There’s a whole process to get a drug listed on a LTI [long term illness] scheme,” he said.
“If like anything else in the HSE, it’s going take time.”
Vera Twomey, the mother of six-year-old Ava Barry, who suffers from a catastrophic form of epilepsy, passed a photograph to committee members of her daughter taken after a lengthy seizure, before speaking.
Minister for Health Simon Harris had promised Ms Twomey earlier this month he would take action on the use of cannabis for medicinal purposes after she embarked on a walk from Co Cork to Leinster House to draw attention to the issue.
Ms Twomey told the committee Ava had Dravet syndrome and had suffered severe seizures multiple times a day.
She said after trying 11 different types of medication that did not help, the only option was a cannabis oil.
Major reduction
Ms Twomey said since the first month of treatment, the number of Ava’s seizures, which were often very violent and could last up to 90 minutes, had reduced by 80 to 90 per cent.
“She only had seven seizures in the whole month. Before, she could have had seven seizures in two hours.
“We want the very best for Ava. I have seen that this is working.
“CBD is the best thing we have done so far for her.”
The Health Products Regulatory Authority (HPRA) has been tasked with carrying out the review by the Minister, due by the end of January.
HPRA chief executive Lorraine Nolan said their first priority is to protect the safety of patients.
She said the “underlying” issue was the lack of evidence on the drug.
