Mum’s urgent plea for daughter’s medical cannabis

Mum and prominent campaigner Vera Twomey has pleaded with the Irish government to continue access to her daughter’s medical cannabis.

Vera whose daughter Ava Barry, 11, has a severe form of epilepsy known as Dravet syndrome has called on Ireland’s Prime Minister Micheál Martin and Health Minister Stephen Donnelly, to help secure the delivery of her medical cannabis prescription.

Before the outbreak of Covid-19, Vera and her husband Paul were travelling to The Netherlands every 12 weeks to buy medication and bring it back to Ireland for their daughter, who has been taking it to control her seizures for the last four years.

Due to the coronavirus lockdown and travel restrictions the Health Service Executive (HSE) have arranged for the importation and delivery of Ava’s medication, along with 40 other patients who are prescribed under individual licences.

Now Vera has revealed that the HSE has confirmed in writing that this arrangement will stop once the restrictions are lifted.

She fears that being forced to travel overseas every few months would put her at risk of contracting the virus which could be fatal for her daughter, whose immune system is compromised due to her condition.

“Ava has taken medicinal cannabis to control her seizures for the last four years. She has responded very well, and considering the serious outcome for Dravet Syndrome patients, it is clear that medical cannabis has saved her life,” said Vera, who once walked from her home in Cork to Leinster House in Dublin in protest to ask former health minister Simon Harris for help in her fight to gain access to medical cannabis.

“The HSE have told us, in writing, that the arrangement will cease once covid restrictions are lifted.

“My daughter has a compromised immune system and there exists a real danger that either Paul or I would contract covid-19 while travelling and bring it back to our daughter. It could cost Ava her life.”

Vera says she has been attempting to contact Stephen Donnelley since he became Minister for Health in June 2020, but only this week received a response from his private secretary – with no offer of a date or time.

“We have little time or interest in being fobbed off as we have been by previous ministers,” she continued.

“Travelling to The Netherlands in Covid times is unacceptably dangerous for our daughter’s wellbeing and the HSE have set a precedent by arranging importation and delivery of the medication. This arrangement must continue.”

Despite the legalisation of medicinal cannabis under The Medical Cannabis Access Programme in Ireland last year, only two products have been approved for use in the scheme, with many patients forced to travel to access their medicine.

“We need a permanent solution that works and that does not cost us, or the state, more than it should, said Vera.

“Right now, delivery is imperative and it must continue no matter what level of lockdown we’re under.”

She added: “Our priority is for our family members and our children who need security of access. Micheál Martin and Stephen Donnelly need to implement change as a matter of urgency.”

Cannabis Health has contacted the Department for Health and Stephen Donnelly’s office for comment.