A mother who walked from Cork to Dublin to demand access to medicinal cannabis for her seven-year-old daughter has been told it would be “wholly inappropriate” for the Health Minister to greenlight the treatment.
Vera Twomey said she was left waiting nine hours for vital documents promised by Department of Health following a meeting with the Minister for Health Simon Harris.
Ms Twomey’s daughter, Ava Barry suffers from Dravet Syndrome, a severe form of epilepsy.
Her mother said CBD treatments have provided Ava with a measure of relief - but she needs full access to THC-based medicinal cannabis oil in order to control the seizures.
The CBD treatments contain minimal amounts of THC - the active substance in cannabis which can result in a high.
Speaking to The Pat Kenny Show this morning, Ms Twomey said Minister Harris had promised to provide her with the documents for her daughter's treatment after their four-and-a-half-hour meeting.
“They made a guarantee to us that they would give us a document to help that neurologist and they didn’t give that document,” she said. “So, if we go in today to our appointment and we meet our neurologist, we are depending on hope.”
Ms Twomey said was later told it would be “wholly inappropriate” for the minister to instruct a doctor on medical treatment.
Dr Tony Holohan, the Chief Medical Officer with Department of Health told The Pat Kenny Show that the minister has no role in relation to the clinical management of any individual patient.
“For good reason the minister has no ability to be able to interfere in the independent decision making of a doctor,” he said.
“If Ava’s doctor, an appropriate doctor, a paediatric neurologist, makes the recommendation that she should have a drug such as this and seeks the licence then she will get it. It is as plain as that.” he said.
He said doctors prescribe and use unlicensed medicines “all the time” where they believe that the evidence warrants it.
“I can assure you there is no impediment,” he said. “There is no view in the Department of Health and I can certainly tell you no view on the part of the Minister or the government or anybody else that if a doctor believes that this is the appropriate treatment for a particular person and that doctor has the appropriate qualification to make that assessment and that doctor is in a position to monitor that patient on an ongoing basis we will be very happy to support that decision.”
Following recommendations from the Health Products Regulatory Authority (HPRA) on medicinal cannabis the minister can grant access to medicinal cannabis if the application is endorsed by a consultant responsible for the management of the patient.
Ava has an appointment with her consultant today and the Department of Health has insisted this is the “appropriate place for clinical decisions to be made"
“There was nothing that we would like better than to have a good result for Ava,” said Ms Twomey. “I would say the only thing that I would value more or as much as getting a result for Ava would be that the other people that are out there in this country that are looking for this medication for their pain; that they would be allowed to gain access to it too.”
The HPRA report published last month recommended the drug should be made available to patients with certain conditions who have not responded to other treatments.
The government’s planned compassionate access programme is expected to make cannabis oil available to help multiple sclerosis and epilepsy patients, as well as chemotherapy patients suffering nausea and vomiting.
