‘The minister needs to change the law to save my daughter’s life’

A desperate mother has pleaded with Health Minister Simon Harris to legalise medicinal cannabis and allow her daughter access to potentially life-changing treatment.

Mother-of-four Vera Twomey made her plea last night as she began a protest walk from Cork to Dublin, where she plants to mount a vigil at the Dáil to highlight her daughter Ava’s plight.

Ms Twomey, who called off a similar protest walk last November after Mr Harris intervened, said last week’s rejection by the HSE of an application on Ava’s behalf for access to medicinal cannabis on compassionate grounds was the final straw.

“I need medicinal cannabis for my daughter,” Ms Twomey said. “We applied for access to it under the compassionate exemption programme but there wasn’t enough compassion for her.

“In fact, the amount of compassion shown to us is remarkably small. Legislation needs to be brought in now. It’s as simple as that.

“I can’t afford to stop this walk now. I couldn’t face myself if something happened to Ava and I felt I hadn’t done enough for her.

“The minister needs to change the law to save my daughter’s life. The ball is in his court.”

Ava, 7, has Dravet Syndrome, a debilitating form of epilepsy which can see her suffer up to 20 seizures a day — some of which can be quite violent.

Her condition has improved remarkably since October thanks to a cannabis extract, Charlotte’s Web.

“She has made more progress since last October than in the previous two years,” Ms Twomey said.

However, this CBD-based treatment contains very little THC — the active substance in cannabis which results in a high.

Ms Twomey said other children with Dravet Syndrome have seen incredible improvements after taking THC-based medication, and she believes Ava would benefit from it too.

She accepted that two paediatric neurologists who are working with the family are reluctant to sign off on Ava’s application for medicinal cannabis. However, this underlines why new laws are required, she said.

People Before Profit TD Gino Kenny, who introduced a bill last September to legalise medicinal cannabis, has joined Ms Twomey on her walk to Dublin.

“The law needs to be changed to give families, the medical community and politicians clarity once and for all on this issue,” he said.

A spokesperson for the Department of Health confirmed that one application for a licence for access to cannabis for a named patient has been granted by the minister, but that a second application — which is understood to be Ava’s — was not supported by any consultant caring for the patient.

“Neither the minister or the Department of Health can grant a licence without this course of treatment being supported by the relevant clinicians involved in the patient’s care,” the spokesperson said.

“It is absolutely in a patient’s interest that their medical experts determine the best and most appropriate course of treatment for their patient and not the Minister for Health of the day.”

Mr Harris and members of the Health Products Regulatory Authority met Ms Twomey, her husband, Paul Barry, and Mr Kenny and Fianna Fáil spokeswoman for children Anne Rabbitte last week and outlined the compassionate access programme which is being established.

It is understood that Ava’s condition qualifies her for access under the scheme but only if recommended by a medical consultant.

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