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'It is huge progress' - Mother appeals for cannabis drug to be covered under Government scheme

The Government's Medical Cannabis Access Programme (MCAP) has been criticised by some doctors tre...
Jack Quann
Jack Quann

14.35 11 Aug 2021


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'It is huge progress' - Mother...

'It is huge progress' - Mother appeals for cannabis drug to be covered under Government scheme

Jack Quann
Jack Quann

14.35 11 Aug 2021


Share this article


The Government's Medical Cannabis Access Programme (MCAP) has been criticised by some doctors treating epilepsy patients.

The programme is intended to allow patients access safe cannabis-based treatments containing CBD - the non-psychoactive components of cannabis.

However, it is reported that no products containing pure CBD have been accepted for use under the programme.

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And that the four products accepted all contain THS - the psychoactive compound found in cannabis.

Dr Colin Doherty is a consultant neurologist at St James's Hospital in Dublin.

He told Pat Kenny they need these drugs for very few patients.

"We need to have a product like this available for a small number of patients in Ireland - we're not talking about every person with epilepsy.

"We're talking about maybe 300 to 400 people who have the worst forms of epilepsy.

"These are people with seizures happening every single day, who've gone through every single treatment available - including surgeries, including device implantations - and these people are at-risk of severe mobility and even death.

"We've been asking, since 2017, please make this product available - there's growing evidence, and there was in 2017, that if we can get CBD to these people we will have an improvement.

"If we use this on the right person, about 10% of those people will go from daily seizures to nothing".

Regina Downey's 18-year-old son, Alex, suffers from epilepsy and has recently started taking CBD.

She is calling on the Government to allow her son access this through the MCAP.

"He would on average maybe get about four or five seizures daily - and every couple of weeks he could get chronic seizures.

"But in the last few years we have tried everything: he has gone through surgeries, he has had a VNS inserted.

"We have tried every medication that there is, and unfortunately no medication is suiting Alex.

"He's been diagnosed with refractory epilepsy, so we're just at the stage where Alex could cross the road and he could get a seizure and he could fall.

"He could go up the stairs, he could get a seizure and fall... so basically Alex needs to be shadowed 24/7".

'Three days without a seizure'

She says her son has been on CBD for three weeks, and the change has been very noticeable.

"His mood, he's not as tired and seizures - Alex could get three our four seizures on a daily basis - at the moment, he could go three days without getting a seizure.

"He's being weaned on this; you have to start off at a very small dose and work up to a certain level.

"It's early days yet, but I and his siblings can see a little difference already... it is huge progress at the moment".

Regina says if all goes well this will be a long-term solution, but it may not be feasible for them without reimbursement under the MCAP.

"We are hoping that this will be the medication that will suit Alex, but it's just so expensive.

"We will be replying on it.

"It is very difficult, and unfortunately it won't be possible on the long-run to keep doing this.

"So we would hope there will be reimbursement for it".

Regina says he will need this drug going forward.

"Alex is an 18-year-old boy and he's hoping to go on to college, but seizures are going to hold him back.

"He did his Leaving Cert there last June, and we're just hoping that he has a better quality of life and that he will be able to move on".

'It is huge progress' - Mother appeals for cannabis drug to be covered under Government scheme

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Main image: Marijuana trees seen during a press tour of the Medicinal Cannabis Research Institute in Thailand in 2019. Picture by: SOPA Images/SIPA USA/PA Images

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CBD Cannabis Cannabis Drug Dr Colin Doherty Epilepsy MCAP Medical Cannabis Access Programme Refractory Epilepsy Regina Downey St James's Hospital THS

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