It all seemed somehow like the fairy tale ending.
Back in November, Vera Twomey started walking from her Cork home to get the attention of Irish Health Minister Simon Harris. Her 6-year-old daughter Ava has the rare condition, Dravet Syndrome, which can see her having seizures up to twenty times a day. Mother Vera believed that medical cannabis could improve her daughter’s illness after children with the same condition reduced their seizures to almost zero after taking medical cannabis containing CBD and small amounts of THC.
Vera had barely walked 30 kilometres before Minister Harris got in contact, agreeing to meet with her in person to discuss the case. Within weeks the Irish Parliament had unanimously passed a bill making medical cannabis legal, with many crediting Vera’s emotional public stance as a deciding factor in the hearts and minds of many of the Members of Parliament.
Ireland passes bill to legalise medical cannabis
Minister Harris agreed to proceed pending the findings of a report commissioned by the Health Products Regulatory Authority. When the report was eventually published last month, the Twomey-Barry family could breathe a sigh of relief as Ava’s paediatric epilepsy was declared a qualifying condition.
And yet yesterday, barely two weeks after the report was published, Vera set off again from her home in the South West of Ireland to walk the 260 kilometres to Dublin. So what went wrong?
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Ava’s application is rejected
According to Twomey, Ava’s application for medical cannabis has been turned down because the family does not have a paediatric neurologist with the appropriate license stipulated by the Irish government to prescribe medical cannabis for Ava’s condition.
Following the last meeting with Vera and her husband Paul, the Irish Ministry of Health made the a statement saying, “until such time as the necessary legislative amendments has been made to facilitate the implementation of the Cannabis Access Programme, it remains open to the Minister to consider granting a licence to an Irish registered doctor for access to medicinal cannabis for named patients”.
Goal posts keep moving
The couple insist that Minister Harris does have the power to grant Ava access to medical cannabis on compassionate grounds and can’t understand why despite several meetings with the Minister, he has refused to budge on his position. They also state that they have complied with every requisite that the Ministry of Health has demanded, “but they moved the goal posts on each occasion, and that’s why we’ve had to walk,” says Vera.
Until now they have been buying CBD oil legally costing them approximately €300 a month. While this has significantly reduced Ava’s seizures, her parents believe the medicine she needs would also contain a small amount of THC, which is currently illegal in Ireland unless prescribed through the pilot access programme.
A matter of life or death for Ava
For Vera, it’s a simple matter of life or death for little Ava. “My husband and I are living in terror that we’ll lose our daughter to seizures and Simon has it in his power to help us.”
And so, it’s day two of Vera’s walk to Dublin and this time there’s silence from Harris and the Ministry of Health. It remains to be seen whether this second protest walk will provoke any real shift in the Irish government’s position regarding Ava’s case.
For more information on Vera’s campaign to get access to medical cannabis for her daughter Ava: Change.org