The last two Decembers have been the best and worst of times for Yvonne Cahalane and her husband John Forde.
In December 2015, she set out with their toddler, Tristan, who has a rare, genetic form of epilepsy – Dravet syndrome – on a lonely journey to Colorado.
There, as one of the 20-plus states in the US that had legalised use of the marijuana plant for medical purposes, she hoped they might find the key to improving his health.
In December 2016, just after she and Tristan returned to their Co Cork home, he became the first person in Ireland allowed to be treated with medicinal cannabis under a licence granted by the Minister for Health, allowing them to import medicinal cannabis for the little boy.
Between those times and in the one year since, Tristan’s life – and consequently that of his whole family – has been transformed.
He went from suffering up to 20 seizures a day, some of which could last up to an hour, to now going two months between seizures, which generally don’t last longer than 40 seconds.
They have been able to find out who Tristan is, Yvonne says simply.
“Who he is, is a little joker – he’s a funny little boy; he loves playing tricks on people and he loves music. He loves his ‘ga-ga’ [granddad] more than anything else in the world. He is doing wonderfully.
“Healthwise, he went from antibiotic after antibiotic, nine medications, oxygen, inhalers, not being able to tolerate more than 10 minutes playing, not walking, not talking – to being a fun-loving little chap that can sleep in his own bed, as opposed to a foot away from my pillow.
“He can sleep through the night without medications keeping him up all night. He eats for himself, whereas before we were pureeing his food, as he would have seizures while he was eating and it would go down his lungs.
“It has made a difference to every single aspect of his life. He loves books, he loves playing, he loves people and he loves playing with people. It has changed everything.”
Just the sheer thrill of seeing his granddad coming was enough to bring on a huge seizure
No longer do they have to step in when Tristan plays with his older brother Oscar (5), as they did before “so the fun would not trigger a seizure”, she explains.
“There were times when he would see his granddad coming to visit him and go to meet him and ‘bam’ – out. Just the sheer thrill of seeing his granddad coming was enough to bring on a huge seizure.”
An ambulance would have to be called to transport him to hospital “just from feeling happy”.
After pinning their hopes on medicinal cannabis, which has brought about such a “phenomenal” improvement in their son, John and Yvonne became pathfinders for others.
They were the first to apply for a licence and, in conjunction with a medical team and Department of Health officials, helped to build an application process, which two others have successfully completed since – most recently another Cork couple, Vera Twomey and Paul Barry, for their eight-year-old daughter Ava Barry, who also has Dravet syndrome.
Yvonne says it is estimated there are between 125 and 200 people in Ireland with this condition. When Tristan was diagnosed before his first birthday, his parents sought advice from leading experts, including Raphael Mechoulam, a world pioneer in cannabis research at the Hebrew University of Jerusalem. They also spoke to parents living in other countries who were using medicinal cannabis for their children.
‘Exhausted every option’
“Before going, we had exhausted every option. We felt we had to go abroad, as there had never been an application for medicinal cannabis before we did it – it was unknown territory,” says Yvonne.
“We just couldn’t see a negative from a treatment point of view. The worst thing we felt we were going to find was that he would be one of those 10-15 per cent that do not see benefits. We went over there with the hope that if he was able to go one week seizure-free that would be enough, not expecting the benefit that it actually did have for him.”
In the May before their departure to Colorado, Tristan had caught a cold that affected his immune system and he suffered a particularly debilitating series of seizures. He had to be hospitalised for three weeks and was left unable to walk or talk. “We were doing a lot of work to try to recover that,” Yvonne says. “We got one word back in October, which was ‘love’.”
Just before they were due to leave for the US, during a going-away get-together at their home in Dunmanway, Tristan had a really bad seizure and they had to rush him to hospital. They were so relieved when doctors cleared him to fly, as they had feared they were going to lose the bookings.
“We landed in a blizzard,” she recalls, during one of the worst winters in Colorado for years. Unable to arrange rental accommodation in advance, they stayed in a hotel for the first week. Yvonne says she “just had to get out with the buggy and literally plough through the snow”, to go and try to convince apartment owners in Aurora, who really didn’t want to deal with non-Americans, that they had the necessary deposit and would be reliable tenants.
She considers them lucky they found a place after just one week. Tristan had been accepted into a study in a hospital, which meant he was undergoing a full spectrum of care, with all his levels measured, from blood tests and hearing and sight, to physiotherapy and occupational therapy, to ensure that the medicinal cannabis was beneficial.
Within the first week, there was an instant effect, she says, with Tristan’s stability improving. In the second week, cognitive improvements became noticeable.
They were hearing more sounds and words, he was pointing and making eye contact – small things that other parents would take for granted. “But these things were all coming back and they were so important. He was repeating what I was saying.”
As the treatment was built up, they began to see seizure frequency and types reduce – there are more than 40 types of seizures, she says. Now he only gets two types out of the five and six he used to have, “so it has actually stopped some seizure types entirely”.
When he eventually did have another seizure, it only lasted two minutes
As Tristan started to go a week, two weeks and then three weeks seizure-free, “we said this is not real, this cannot be happening. We were unbelievably excited.”
When he eventually did have another seizure, it only lasted two minutes rather than an hour, so that too “was a huge step”.
Although the improvements in Tristan were immensely heartening, it was very difficult for John and Yvonne being apart, with a child each, on either side of the Atlantic.
‘Hard and lonely’
“It was hard and it was lonely,” she says. “It was tough for both of us looking at the other child on the other side of Skype videos. Oscar didn’t know how to process it – when he would see me on the videos, he would get sad and just walk away. That would just break my heart – he had no idea why I left.
“He came around – but it was tough. There were tears for so long.”
By April, Tristan was “a completely different boy” and Yvonne decided she could not go on any longer without Oscar.
John and Oscar went over to see them and while John had to return to work as an air traffic controller after three days, Yvonne kept Oscar with her.
“It was one of the best things we ever done because Tristan had Oscar to look up to, to copy and to play with because before that it was just the two of us. He needed that social interaction.”
In the meantime, the couple, supported by doctors, were working with the health authorities in Ireland to find a way to get Tristan what was proven he needed back home.
“We never met anybody politically who said ‘we’re against this’. I think there is a huge misunderstanding and misinformation put out there that they are against this. They are not – they never have been,” she says.
However, she believes the Cannabis for Medicinal Use Regulation Bill 2016 is not workable as it is, and needs to be redrafted or seriously amended. There are many issues that need to thrashed out by legislators, medical bodies and lawyers.
By last December, Yvonne had no choice but to come home, as their extended US visas were due to expire, but she believed the licence application was close to being finalised. And, indeed, within days of their return they were told the licence had been granted.
Since then, they have had a prescription from Tristan’s doctor here which they bring over to The Hague every three months to be filled. Tristan takes the oil, which contains chemical compounds from cannabis, including CBD (cannabidiol) and THC (tetrahydrocannabinol), a few times a day.
Where once he had been on nine different medications and had tried a total of 12, these have been gradually reduced and Yvonne has seen their side-effects disappear. Now he takes just two medications at reduced dosage, along with his medicinal cannabis.
This is “an amazing achievement” for Tristan, who will turn four on St Stephen’s Day, and who, she says, would probably not be here today without all the support they received, particularly from their community in Dunmanway. The sooner the proposed access programme for medicinal cannabis is up and running the better, she adds.
The last three years have changed Yvonne's outlook on life
“I do hope for the conditions covered to expand and am very thankful that so much work is taking place behind the scenes for this to happen safely in Ireland,” she adds.
The last three years have changed Yvonne’s outlook on life. The more she learned about what her son and other sick people need, the more she became aware that things can be changed.
“Battle” is the word that’s always used, she says. “Any family who has any extra need from healthcare has to ‘battle’ for it. And we are certainly no different.”
So, she has gone back to college to get a law degree, with the intention of using it to “make a difference”.
Meanwhile, Tristan should be attending pre-school but there was an issue over the administration of his medicine. However, he is due to start in St Mary’s National School in Dunmanway next September, where there is a special unit and he will be able to get adapted care there. The school has no issue with his condition and the medication, so they are really looking forward to Tristan’s first day there.
“I definitely can’t wait for that,” adds Yvonne. “It is going to be huge.”
THE LOWDOWN
Irish-registered medicinal practitioners who wish to prescribe cannabis-based products containing THC (the main psychoactive component of cannabis) may apply to the Minister for Health for a licence under the Misuse of Drugs Act. The licence application must be endorsed by a consultant who is familiar with and responsible for the care of the patient and is prepared to monitor the effects of the treatment over time.
The main elements of such an application must include:
- An outline of the treatment the patient has received to date and justification from the doctor as to why it is appropriate in their patient's specific circumstances to prescribe a cannabis product.
- Details of the cannabis product which it is proposed to prescribe and administer to the patient.
- The source of the cannabis product.
- The arrangements for the ongoing monitoring and care of the patient once the cannabis treatment has commenced.
The Minister for Health can only act after a valid Ministerial licence application is received. According to the department, to date three valid licence applications, for three different individuals, have been received but it cannot comment on the cases.
The families of the first and third – Tristan Forde and Ava Barry – went public, while the second case is believed to be that of a chronic pain sufferer.
Last February, Minister for Health Simon Harris published a Health Products Regulatory Authority report that noted the absence of scientific data demonstrating the effectiveness of cannabis products. Cannabis for Medical Use – A Scientific Review advised that if cannabis were to be made available for medical purposes it should only be allowed under a controlled access programme for the treatment of patients with:
– Spasticity associated with multiple sclerosis resistant to all standard therapies and interventions whilst under expert medical supervision;
– Intractable nausea and vomiting associated with chemotherapy, despite the use of standard anti-emetic regimes whilst under expert medical supervision;
– Severe, refractory (treatment-resistant) epilepsy that has failed to respond to standard anticonvulsant medications while under expert medical supervision.
On the foot of this, the Minister announced he would set up an access programme for cannabis-based treatments for such conditions. The following month, an expert group, chaired by Dr Mairín Ryan of Hiqa, was appointed to draw up guidelines to facilitate the prescription and supply of medicinal cannabis to qualifying patients. This task “will take some further time”, according to the department, whose officials are working on secondary legislation to underpin the access programme.
Meanwhile, the future of the Cannabis for Medicinal Use Regulation Bill 2016 is unclear.
Timeline
July 2016 – Cannabis for Medicinal Use Regulation Bill 2016 is introduced as a Private Members' Bill in the Dáil by People before Profit TD Gino Kenny.
December 1st, 2016 – The Bill passes through the Dáil to the second stage and is referred to Select Committee on Health.
December 22nd, 2016 – Tristan Forde (2) becomes first person in Ireland to be legally allowed access to medicinal cannabis after Minister for Health Simon Harris approves application for a licence.
February 2017 – The Health Products Regulatory Authority publishes Cannabis for Medical Use – A Scientific Review, in which it notes the absence of scientific data demonstrating the effectiveness of cannabis products.
March 2017 – An expert reference group chaired by Dr Mairín Ryan is appointed to draw up guidelines to facilitate the prescription and supply of medicinal cannabis to qualifying patients.
July 2017 – The Oireachtas Health Committee says Private Members' Bill on regulating use of medicinal cannabis should not proceed to committee stage. The proposed framework is "too loose to effectively guard against leakage of supply to recreational users, [and] overuse by patients".
November 2017 – Harris signs a licence application that allows Ava Barry (8) access to medicinal cannabis – the third such licence granted. The second is believed to have been issued just a few weeks earlier, for a chronic pain case.
