Ryan Gorman, a 26-year-old man, from Dublin, has become the first patient to receive the cannabis-based product, CannEpil, through Ireland’s Medical Cannabis Access Programme (MCAP).
The MCAP was introduced four years ago, although this marks the first product to be prescribed under the scheme. It was only announced in 2021, that Cannepil would be the first product available. CannEpil is a high CBD, low THC formula developed by MGC Pharmaceuticals.
Speaking with Cannabis Health, Ryan’s father, Brendan said: “Hopefully, this will progress to a place where his seizures are reduced and his life is of better quality.”
Ryan Gorman is the first patient to receive medical cannabis through the scheme
There are currently around 37,000 patients with epilepsy in Ireland. Of this number, Brendan estimates that 800 patients would have the same type of epilepsy that Ryan has, making them candidates for the MCAP.
Ryan developed seizures when he was just 15 months old. He is now in his mid-20s and currently experiences clonic tonic and absent seizures twice a day.
“He developed febrile seizures when he was 15 months old. These were very serious life-threatening seizures,” Brendan said.
“In the beginning, they offered him standard anti-seizure, epilepsy drugs. They kept him alive, as he is still here but they weren’t getting the seizures to a good place. They weren’t controlling them to any extent,”
“His seizures were very prolonged and very physical. It’s very concerning because you can die from a standard seizure.”
Brendan highlighted that there are constant risks to Ryan’s safety as a result of his epilepsy.
Ryan’s height means that his clonic tonic seizures can be difficult for carers to manage physically. Brendan has been waiting on surgery for five years for a hernia he sustained from dealing with Ryan’s seizures. He has delayed surgery twice while waiting for news on Ryan’s medical cannabis access.
Brendan explained: “There are two types of seizures that Ryan has; one is referred to as absence seizure which would last about 15 to 20 seconds and this will go on throughout the day periodically. There would be a risk in terms of where you are, if you were on an escalator then he could simply fall, or if he was climbing the stairs at home.
“The second type of seizures, the clonic tonic ones are incredibly physical, but also more life-threatening and dangerous. They can go on for 12 to 16 minutes and he is six foot four. He is a grown man who will be 27 in December so over the years they have become more pronounced because of this.”
Seizure control
As the seizures became more difficult and showed no signs of being controlled by medication, Brendan became curious about what medical cannabis could potentially offer Ryan. He had no prior interest in cannabis but he was desperate to access any alternative treatment that may work.
“If you have a child, son, sister or brother that is suffering intolerably from a dysfunctional medical ailment, what else can you do? If this is a treatment that doesn’t have a negative impact on the person who takes it, then that was the only option for us, once it was legalised. It’s only natural to follow through with it.”
He added: “We won’t know yet if it’s going to be a success story, but the information on the ground is that it has worked for a number of people in many different countries. When it comes to medical cannabis usage, Ireland is behind from that point of view in terms of the Netherlands, Belgium or even the South American countries.”
Brendan is incredibly hopeful that the medication will have a positive effect on Ryan. It was only granted on Friday 19 November, so Ryan has yet to start taking CannEpil.
“All we can do is hope that what has been prescribed will have the desired effect. I put it to Ryan’s consultant neurologist in St James Hospital in Dublin and he was behind the idea from when we first talked about it over two years ago. He said Ryan would be a candidate if it was made legal but his only concern was the level of THC contained in it.”
Ryan’s consultant is Dr Colin Doherty from St. James Hospital. He has become the first doctor to prescribe through the programme. He was one of many neurologists who stated their concerns about it, due to the levels of THC contained in the products suggested for a prescription. CannEpil is a high CBD, low THC product and is so far the only one available through the MCAP.
The HSE has confirmed that three patients, who are all believed to be adults, have been added to the MCAP in recent weeks.
There has been widespread criticism of the programme that it does not include enough conditions, in particular, chronic pain. It currently only allows for the prescribing of cannabis for nausea induced by chemotherapy, multiple sclerosis and epilepsy. There have been a number of attempts to get more products available but so far, only CannEpil has been successful.
CannEpil and seizures
Brendan will be monitoring Ryan closely when he starts on CannEpil. He is positive about the prescription but remains cautiously optimistic about the benefits.
He said: “I’m going to be administering this myself on an incremental basis in small doses. I’ll be monitoring him to see how it affects him and if it’s beneficial or not. It contains a small percentage of THC which has been known to counter the seizure profile and reduce it. It may be at a higher level than the neurologist would have desired, which I’m in agreement with, but we are in a place where there is no other option. This illness he has is a life-threatening one so it’s something a parent has to make with some degree of difficulty as you ask yourself, what other options have you got?”
Brendan continued: “In terms of how it’s going to benefit Ryan and others out there, it’s wonderful news. You don’t want to get yourself into a state of believing this is a silver bullet but you want to remain hopeful. You need to apply logic as well as emotion. Everyone has a degree of euphoria when they get some really good news, but then the dust settles. This hasn’t settled yet, as it’s very transitional right now. I’m very happy after all these years as it’s down to the hard work of people protesting, including myself.”
Protesting and access
Brendan is grateful to Gino Kenny, the People Before Profit TD who has fought to make medical cannabis more accessible for patients, saying: “He is a lovely man who spearheaded the whole idea of making medical cannabis accessible. It’s been a long road, over five years now, since he put it before our government.
He also acknowledges the role of cannabis activist, Vera Twomey.
“Vera showed real spirit to walk all the way up to Dublin,” he added.
“When you have a child, then that is the driving factor. You could be an ordinary individual but if something like this arrives at your doorstep then you have to get the strength from somewhere to become proactive. If Ryan benefits, and it follows that there are benefits for others, then that’s brilliant.”
Speaking with Cannabis Health, Kenny commented: “This is an important milestone in regards to families and campaigners who have been highlighting this issue for the past five years. Many of us remain very critical of the MCAP and its limitations. The first person getting access via prescription hopefully represents others that need the legal and medical access to this treatment.”
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