Stephen McNeice
Stephen McNeice

21.31 21 Jul 2021


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Vera Twomey says she's "delighted and grateful" after it was confirmed her daughter's medicinal cannabis will now be funded up front.

Vera's daughter Ava suffers from Dravet's Syndrome - a rare form of epilepsy.

Medicinal cannabis has controlled Ava's seizures for the past four years.

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After a lengthy and high-profile campaign by Vera, Ava was approved to use the treatment legally back in 2017 - although for several years the family had to travel to the Netherlands to pick up the Bedrocan medicine.

However, the family also had to pay thousands of euro upfront for the medical cannabis, before it was reimbursed by the State several weeks later.

Earlier this week, Health Minister Stephen Donnelly called Vera to confirm that would no longer be the case.

He also said publicly the refund 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 Show, Vera said they were delighted to hear the news.

Vera Twomey 'delighted and grateful' her daughter's medical cannabis will now be funded directly

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She said: “Stephen Donnelly called us to confirm it.

“It’s going to cover some people - there are some others who don’t have the qualifying conditions. Their situation still needs to be addressed. But after talking to [Minister Donnelly] yesterday, he’s very interested in the topic of medical cannabis - I think he is genuinely the most progressive minister I have dealt with regarding this issue.

“We’re grateful they gave the time and attention to this to help us. There are still other people to help, but I think he’s someone who’s genuine towards helping people.”

In Ava's case, a consignment of medical cannabis from the Netherlands costs around €9,500 every three months.

That price would only increase as Ava got older, something Vera said would have made the upfront payments unmanageable.

She said: “It was very stressful to have to continuously have this large sum of money - to us at least - in cold storage for the next prescription.”

Vera said medical cannabis has had a dramatic impact on her daughter's life.

Before starting the treatment, Ava would have "daily, aggressive and constant" seizures - spending several months in hospital every year as a result.

However, Ava now hasn't been admitted to hospital in an emergency since October 2016 - and her seizure control is over 90%.

Describing it as a "night-and-day" difference, Vera added: “For a patient with such a remarkably complicated form of epilepsy, that is phenomenal - it’s life-changing.”

Last year, the Government confirmed families would no longer have to travel abroad to collect prescribed cannabis products as a 'delivery service' was being made permanent.

Authorities in the Netherlands have barred the commercial export of cannabis oils, but they do allow the filling of individual prescriptions from EU states.

Main image: Vera Twomey. Photo: Sam Boal/Rollingnews.ie 

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