Vera Twomey says she is “delighted and grateful” after it was confirmed that her daughter’s medical cannabis will now be pre-funded.
Vera’s daughter Ava has Dravet syndrome – a rare form of epilepsy.
Medical cannabis has been controlling Ava’s seizures for the past four years.
After a lengthy and high profile campaign by Vera, Ava was approved back in 2017 to legally use the treatment – although the family had been for several years had to travel to the Netherlands pick up the Bedrocan medicine.
However, the family also had to pay thousands of euros in advance for the medical cannabis before it was reimbursed by the state a few weeks later.
Earlier this week, Health Secretary Stephen Donnelly called Vera to confirm this would no longer be the case.
He also said publicly that the reimbursement system “will be replaced by a direct payment system from the HSE to the dispensing pharmacy in the Netherlands”.
The new rules cover three conditions, including severe, refractory epilepsy.
Speaking on the Pat Kenny ShowVera said, they were pleased to hear the news.
Vera Twomey is delighted and grateful that her daughter’s medical cannabis is now being funded directly
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She said, “Stephen Donnelly called us to confirm.
“It will cover some people – there are others who don’t qualify. Your situation has yet to be resolved. But after talking to [Minister Donnelly] yesterday he was very interested in the topic of medical cannabis – I think he really is the most progressive minister I have dealt with on the matter.
“We are grateful that they gave themselves the time and attention to help us. There are other people who can be helped, but I think he is someone who sincerely helps people. “
In the case of Ava, a delivery of medical cannabis from the Netherlands costs around 9,500 euros every three months.
That price would only go up as Ava got older, which Vera said would have made prepayments unmanageable.
She said: “It was very stressful to have to keep this large sum of money – at least for us – in the cold store for the next recipe.”
Vera said medicinal cannabis had a dramatic impact on her daughter’s life.
Before starting treatment, Ava had “daily, aggressive, and constant” seizures – after which she spent several months in the hospital each year.
However, Ava has not been hospitalized in an emergency since October 2016 – and her seizure control is over 90%.
Describing it as “day and night”, Vera added, “For a patient with such a remarkably complicated form of epilepsy, this is phenomenal – it changes their life.”
Last year the government confirmed that families no longer need to travel abroad to collect prescribed cannabis products as a “delivery service”. was made permanent.
The authorities in the Netherlands have banned the commercial export of cannabis oils, but allow individual prescriptions from EU countries to be filled out.