A mother who campaigned tirelessly for the State to licence and fund cannabis oil treatments for her severely epileptic daughter has finally had her dream come true.
Vera Twomey was contacted at the weekend by both the HSE and the Department of Health and told the State will reimburse the cost of medicinal cannabis, which she sources in the Netherlands, for the treatment of her eight-year-old daughter Ava, who has Dravet’s Syndrome.
While Ms Twomey will continue to have to travel to the Netherlands to collect the medication, she will no longer have to cover the cost of the oils, which come in at up to €5,000 every three months.
“They said they were after finding a way to reimburse Ava’s medication and that they would send on further details next week,” she said. “We will still have to travel to collect it, but when we come back, we will be reimbursed. It’s such a relief.”
Ms Twomey said it was her understanding the arrangement will take immediate effect.
However, it appears Ava’s medication will not be funded under the long-term illness scheme (LTI), one of a number of schemes reimbursed by the State.
Ms Twomey said she was given to understand the department and the HSE had found “a mechanism” to fund it, but not via the LTI. She added that she was still awaiting further details.
Yesterday a spokesperson for the HSE said it had “entered into a special arrangement with Ms Twomey to cover the cost of her daughter’s medication for as long as she continues to hold a special import licence which was granted to her last December.
“This licence allows Ms Twomey to import three months’ supply at a time into Ireland, said the HSE spokesperson.
“The HSE will continue to keep this matter under review.”
Last Thursday, following a press conference at which Ms Twomey called on the Health Minister, Simon Harris to cover the cost of Ava’s cannabis oil treatments under the LTI, the HSE said if an export licence is not granted by another Member State, in this case the Netherlands, it cannot be procured by a community pharmacy in Ireland. Community pharmacists dispense medication under the LTI.
However, it seems this obstacle may have been overcome by the fact that Ms Twomey collects the medicine herself.
She was granted a licence for the medicine last December by the Health Minister following a two-year campaign.
In the six months prior to that, she had moved to the Netherlands where her daughter was treated by a consultant paediatric neurologist who prescribed medicinal cannabis.
The HSE had suggested that Ava use another product, available under the LTI, but Ms Twomey said their consultant had said it would be “irresponsible and damaging” to change Ava’s medication from something that was known to work to something that was unknown.
Ms Twomey said Ava has been seizure-free since she started her new treatment.
Whether the department /HSE “special arrangement” allowing reimbursement of Ava’s treatment will be extended to other patients taking medicinal cannabis remains unclear.
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