Vera and Paul Twomey, with their daughter, Ava, who has Dravet’s Syndrome, a severe form of epilepsy.Picture: Daragh McSweeney/Provision

Vera Twomey delighted daughter's medication to be paid for by Government

MEDICATION for eight-year-old Ava Barry, who has a severe form of epilepsy, called Dravet’s Syndrome, has finally been included on the State’s long-term illness (LTI) scheme.

The confirmation comes after a relentless campaign by Ava’s mother, Vera Twomey, who has been battling for a number of years.

Vera thanked the public, and a number of elected representatives, for supporting Ava.

Ms Twomey, from Aghabullogue, said they had received the “fantastic news” that the medication Ava needs will be covered under the LTI scheme.

Ava’s medicine, cannabidiol (CBD) oil and tetrahydrocannabinol (THC) oil, costs up to €5,000 every three months. Up until now, the medicine was paid for through a GoFundMe page and the family’s own funds.

Ms Twomey said they would still have to go to Holland to get the medication, but they would be reimbursed for it here in Ireland.

Back in December, Ava was granted a special licence to receive medicinal cannabis treatments and Ms Twomey said getting the medication under the LTI scheme was just as important.

“I thought nothing could top getting the licence in December, but the worry of this has been immense. Now it is solved, we have what we need for Ava.”

Ms Twomey thanked the public for their support and said: “We wouldn’t have got it, only for the support we received.”

She told her Facebook followers that she was “so happy” and went on to thank a number of people for assisting her in fighting for access to medication for her daughter, including Cork North Central Solidarity TD, Mick Barry.

Mr Barry said: “Big congratulations are due to Vera Twomey, her husband, Paul, and all their supporters, for winning this campaign.

“This 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.”

Mr Barry also said that the Solidarity- PBP’s Cannabis for Medicinal Use Regulation Bill, 2016 has passed first and second stages in the Dail, but is stuck in third stage (committee stage), and he said that the Government are attempting to bury it there.

“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,” he said.

“Those who need medicinal cannabis, and their supporters, will now step up the fight for legalisation.”