Vera Twomey is terrified her daughter will revert to a life of “suffering and seizures” if the State continues to refuse to reimburse transformative cannabis oil treatments.
Ms Twomey, from Aghabullogue, Co Cork, held a press conference yesterday calling on Health Minister Simon Harris to include her daughter’s medication under the long-term illness (LTI) scheme.
Ava, 8, has Dravet’s Syndrome, a severe form of epilepsy which, in the past, has led to multiple daily seizures. On one occasion, Ava suffered a heart attack after 17 seizures in an eight-hour period.
Ms Twomey successfully campaigned for Mr Harris to grant a special licence which allows Ava to receive medicinal cannabis treatments. Ms Twomey said it is the only medication that works.
However, before the licence was awarded last December, she had moved her daughter temporarily to the Netherlands, where a neurologist prescribed the treatment she had been unable to access at home.
They returned at Christmas after “six months in exile”, believing Ava’s medication would be covered under the LTI scheme, “as all her previous anti-epileptic medication had been since 2010”.
It has emerged, however, that the treatment was not among the products the State reimburses. Ms Twomey said the HSE and the Government told the family there was a difficulty importing it.
She said the State could not say it had a problem importing it, as Ava’s parents travel to the Netherlands to collect it.
The medicine costs up to €5,000 every three months, the cost of which has been met to date through a GoFundMe page and the family’s own funds. Ms Twomey said epilepsy is an LTI and should be covered by the LTI scheme.
Sinn Féin TD Jonathan O’Brien, who attended the press conference, said it was his understanding that to qualify for reimbursement, medicine had to be exported by a pharmacy and imported by a pharmacy “and the rules and regulations in Holland don’t allow that to happen”.
The HSE confirmed that the importation of medicinal cannabis by a pharmacist requires an export licence from the state where it is manufactured, and a ministerial licence in Ireland to import.
The HSE said that, “for some particular formulations, if an export licence is not granted by another member state, it cannot be procured by a community pharmacy in Ireland”. Drugs reimbursed by the State are dispensed by community pharmacists.
Mr O’Brien said the simple solution was for the State to change the guidelines governing reimbursement to allow the importation of Ava’s medication.
Ms Twomey said the HSE had suggested an alternative product that could be reimbursed, but their neurologist said Ava’s seizure control was “extremely fragile” and it would be “irresponsible and dangerous” to change her medication “from something that is working to something that is unknown”.
In a statement yesterday, Mr Harris said the legal issues involved in developing a reimbursement process for cannabis-based products for medicinal use “are being examined and my officials are working to resolve this matter”.
He said local restrictions in place in the Netherlands “do not permit commercial export of cannabis-based oil products from that country”.
However, department officials were continuing “to work to establish a reliable and affordable quality controlled cannabis product supply for the Irish market”.
People Before Profit TD Gino Kenny, who put forward a bill, currently stalled, pushing for legalisation of medical cannabis, said it was “ludicrous” that the minister had granted a licence for a medicine that the patient was expected to collect and fund.
Solidarity TD Mick Barry said the HSE and the department had repeatedly put “bureaucratic obstacles” in Ms Twomey’s way.
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