HSE will reimburse cost of Ava Twomey’s medical cannabis
Young girl travelled to Netherlands with family last year to treat Dravet syndrome
Vera Twomey from Aghabullogue, Co Cork, with her daughter Ava, who suffers from Dravet syndrome. Photograph: Daragh Mc Sweeney/Provision
The HSE has agreed to reimburse medicinal cannabis sourced in Netherlands for a young Co Cork girl who has a severe form of epilepsy.
Ava Twomey, from Aghabullogue, Co Cork, travelled to the Netherlands last summer with her family to receive medicinal cannabis to treat Dravet syndrome.
After two years of campaigning, her parents, Vera Twomey and Paul Barry, received the news last December that a medicinal cannabis licence had been approved for Ava.
The girl, who suffered multiple seizures a day, is now seizure free, her family say.
Previously, the Government had refused to allocate funds for her cannabis medication even though the tablets she previously took, which failed to alleviate her seizures, were paid for under the long-term illness scheme.
“We got the call from the Department of Health and the HSE last night telling us they will reimburse us for the cost of the medicine and that they will continue to do so going forward,” said Ms Twomey.
“It costs €4,000 to €5,000 every three months to buy, which is unsustainable for any family. So a huge weight has been lifted as we will be reimbursed for the cost of the drug. It does mean we will still have to go over to Holland every few months to get it but it is a step in the right direction.”
Ms Twomey said well-wishers had contacted her offering to cover the cost of the drug for her daughter but she declined.
“I didn’t want people giving me money for it because I want Minister for Health Simon Harris and his department to step up and fund this drug that has the power to change people’s lives,” she said.
Mr Harris previously said the legal issues involved in developing a reimbursement process for cannabis-based products for medicinal use were being examined. He said officials in his department were working to establish a reliable and affordable quality controlled cannabis product for the Irish market.
Private Members’ legislation on legalising medicinal cannabis remains on the Dáil agenda, despite the Oireachtas Committee on Health saying it is legally flawed.
Cork North Central Solidarity TD Mick Barry said the campaign to legalise medicinal cannabis should be stepped up.
“Big congratulations are due to Vera Twomey, her husband Paul, and all their supporters for winning this campaign. Yesterday’s breakthrough was long overdue, it doesn’t reflect at all well on the government and the state that the family were forced to fight so hard and so long just to win justice for their daughter,” he said.
“The Government cannot be allowed to bury the Bill in committee, pressure can and will be stepped up now to challenge the Government’s blocking tactics on this important piece of legislation.”