Vera Twomey‘s daughter Ava suffers from Dravet’s Syndrome – a rare and severe form of epilepsy which causes multiple seizures a day. Twitter: @Veras1
The attention your 2017 sit down protest and your 2018 protest walk from Cork to Dublin drew are seen by many in Ireland to have been highly influential in seeing the Medical Cannabis Access Programme established last year. What was your reaction to its announcement? When the MCAP was announced, we were so delighted. We thought that hopefully the efforts that we’d made for Ava, what we had done had resulted in some visible change. That action had been taken and that something positive would be on the horizon for us. Unfortunately, the compassionate access programme has really turned into a trojan horse. I feel like there’s certain people out there that talk about cannabis being a trojan horse, which isn’t true. But although nobody is suggesting that medical cannabis cures everything, it is certainly the most effective medication that we’ve encountered and I feel that the compassionate access programme is the trojan horse, not the cannabis itself. Because nobody has been granted a prescription under the compassionate access programme because it’s not up and running. And so an individual licence is the only way that you can access medical cannabis in this country. So, although we were hopeful that something would come from it, it helped no one. It’s just been a token gesture up until now by officialdom.
Has the Medical Cannabis Access Programme been somewhat successful in treating Ava’s condition? Absolutely not, not at all. The cannabis access programme has been of no consequence to our family whatsoever. Our licence was granted on an individual basis and all of the other patients who have been prescribed medical cannabis in this country are getting their medical cannabis via an individual licence. So not only has the CAP not benefitted Ava individually, it hasn’t benefited anybody broadly because there’s nothing there. There isn’t even a product that’s attached to the programme as of yet, in the sense that they haven’t agreed prices on the medication. So they can put it out there and say that there are four products now on the compassionate access programme. Yes, they could be on the programme on paper, but in practice, nobody is getting access to anything. So, none of this plan is very grounded in reality. I would totally agree with that.
If the MCAP trial is successful, do you see the government leaning more towards cannabis reform or do you feel there will still be considerable opposition? Well the thing is, if the Medical Cannabis Access Programme was operational, there might be an opportunity for change or for adjustments in the opinions of politicians, civil servants and the medical profession. But they have created a programme that isn’t switched on, essentially. So therefore, there’s nothing positive going to come out of the CAP as it stands. The only thing that came out of the CAP was… It planted the idea in people’s minds within the country that this issue was sorted and that people seeking medical cannabis were being helped. But that’s not the case at all, unfortunately. It seems to have swept it under the carpet, as far as I’m concerned. Weren’t they seen to be doing something? They had the press conference, they made the statements, they had the paper. What they’ve done has only been of benefit, possibly, to their own appearance to be doing something, because it’s not helping patients anyway at all.
The government has made their views clear that concern for adolescent usage is their main deterrent to recreational cannabis legislation, but what do you feel is the reason they’ve been so hesitant with medicinal cannabis? Golly, there’s a question! So I think it’s a lot of reasons. One of the reasons I suppose is that the word cannabis has an association with people using it recreationally. And I think at the beginning, when we started back in 2015, there wasn’t the knowledge in this country about medical cannabis and the many studies that people were doing in different countries. I think that people genuinely didn’t know, so that was an obstacle. Engaging with people at the beginning was difficult, because you almost had to explain that it is a medicine, that it is possible, that it’s proven to work.
Also, the government is referring to Doctors then who are practising for many, many years, who have an ingrained opinion about cannabis. They’d have a certain bias against it, yeah. The bias is there. So unfortunately, a lot of the people that government Ministers would be listening to would be medical people with an opinion that pharmaceutical medication is the way forward. Yeah. Not cannabis. So that was difficult But also, in the background you’ve got the lobbying by the pharmaceutical companies which is very real. And you know there is a lot of industry surrounding pharmaceutical companies in this country. They have a lot of power, a lot of money to be able to push their viewpoint forward. And I do think that at some level behind the scenes, that was part of it too. That if they granted medical cannabis to one person legitimately, it would open the floodgates for other patients.
Really, when it comes down to it, the pharmaceutical companies… they’re running a business. They don’t want to lose patients. And people like the epilepsy patients for example, are a very valuable source of income for pharmaceutical companies. Because, you could be a person that could be diagnosed with epilepsy at eight years of age. You may be on pharmaceutical medication for the next forty years. So you’re a steady source of income. You’re a steady source of income, and let’s be real about it. Ava has not been admitted to hospital since she started her CBD and THC oil in 2016. She has not been admitted to hospital in four years, Richard. That’s amazing. Isn’t it? And I mean, Dravet’s Syndrome, that Ava’s got, is the most hideous diagnosis of epilepsy that you could really get. I was listening to your interview with 1Mary Biles on the Cannabis Voices podcast yesterday. I remember you saying towards the start that Ava was getting over 200 seizures a day at one stage, when she was very young.
Yeah Richard, she was. I never came out and gave the real figure of how many seizures Ava would have a day, I kept it at twenty and thirty seizures a day, an amount that people could understand. Because it’s very difficult to understand how a child would even have time in a day to have 200 seizures. But if you talk about the different kinds of seizures, there are so many different types. She had them all. I sometimes think Ava was having seizures that were probably unique to her, they didn’t even have a title. So yeah, they were vicious. And even when she was a toddler, she was having those? She started when she was four months old. Our first seizure, she was vaccinated that morning at eleven o’clock, ‘cause I remember it well. It was ten to eleven (when) we went in (and) she was vaccinated. She had a forty-five minute seizure that night, and she was four months old. And d’you know, I remember it… but it was so shocking. It’s a blur, to be honest with you. Getting back to the question, there’s a lot of reasons why there hasn’t been progress. And the unfortunate thing in Ireland is that there’s not an opportunity for the medical professionals to get proper education surrounding medical cannabis in this country at the moment. Yeah. I was speaking to Dr. Órfhlaith Campbell (for an upcoming Green Lens interview) recently and she said that it’s systemic in Ireland. Trainee third level Doctors and nurses are not being equipped with how to treat people with cannabis in any way, nor are they equipped properly with how to treat people who are arriving to them in the hospital having overdosed on dangerous drugs. They’re not being educated on the most progressive treatment options.
I think in university… I spoke to Professor 2Michael Barnes one time and he said to me that there’s about two hours of education surrounding the endocannabinoid system in a Doctor’s education in college. That’s ridiculous, in an entire course? Yeah. How long is the course, seven years? That’s appalling. The education is very necessary, but it has to be provided by the right people. Somebody qualified to train the Doctors, but also somebody who the Doctors can be comfortable with and respect as well. How much of an impact do you see the Citizens’ Assembly having on reform? Why do you think they’ve delayed the announcement of an assembly date for so long? I thought that it was going to be a positive thing. I was a bit concerned that I didn’t understand how it worked. I said I’d give a buzz and ring them and I spoke to a lady there and she explained how it works and so forth. And I asked her, when did she think that our issues surrounding the cannabis would be raised. And unfortunately, she said to me that she thought it could be more than a year, at least. So it sounded like it could be up to two years, because there’s several other issues that the Citizens’ Assembly are going to be addressing before the cannabis issue. So regarding the Citizens’ Assembly, I thought it was very disappointing.
So it’s in the pipeline after several other assemblies. You’d wonder why they’d bother announcing it as soon as they did, if they weren’t ready to announce a date. I think it was to make a show that something was being done about it. It’s a good sound bite, it’s a good thing to be able to comment on at the Dáil (the Lower house of Irish legislature) that the Citizens’ Assembly was going to be done. But we need action now. We need assistance now. We need the CAP up and running now. We don’t need to wait another two years for the opportunity to talk and three more years for reports and findings and this, that and the other thing to be done. We need action, not talk. The governments of Ireland and the U.K both seem very reluctant to be proactive about cannabis. I think Matt Hancock over in the United Kingdom is a grave disappointment as well. And he has made promises to mothers over in England, Scotland and Wales regarding the delivery of prescriptions for their children and reimbursements for the medication and nothing has come to pass. It’s very, very difficult for people over in the United Kingdom. They’re nearly worse off than people here in Ireland, to a degree.
I suppose because there’s a far bigger population in the U.K that they would feel the urgency that bit more than they do here. There is a much more sophisticated organisation of people over in England than what there is in Ireland at the moment campaigning. They have websites, they’ve even set up tutorials and information for Doctors and so forth. But still, even with all that, the resistance is palpable. So it’s very grave, because you have patients on the medication whose families aren’t being refunded for the cost of the medication. You have other patients who need medical cannabis and can’t get prescriptions, so there’s problems on every level, for everyone. With us, we’ve got the prescription for our medication, but they want to take the delivery of Ava’s prescription away when the Covid restrictions are lifted. So I feel like… You’re persecuted at every step, with anything surrounding cannabis. It’s difficult to contend with at times, you know?
Your televised appeal to Leo Varadkar (the Tánaiste, or Deputy Head of Irish government) during your acceptance speech at the Irish People of the Year Awards 2018 also had a profound effect on many Irish people. How has Varadkar acknowledged that speech. Has he remained in consistent contact with you since then? I was never in consistent contact with Leo. I’ve met Leo twice. The night of the Person of the Year Awards is interesting actually. I had a few words prepared. They were similar to what I said when I came up on stage, but what happened on that evening was, I went out for some air. The room was very warm and I suppose you would be nervous, ‘cause there was a lot of people there and with all our finery I didn’t want to fall off the stage or anything like that, you know? Vera laughs So, I went out for some air and I came back in and I was standing inside the door just having a conversation with a lady and Leo walked along. I walked up to Leo and I said: “Hello Leo”. It was the first time that I had met him in person. And I said to him, “My name is Vera Twomey. I’m Ava Barry’s mum. I want to know what you’re going to do about the legislation regarding the medical cannabis”, because the bill was being stalled at the time.
He put out his hand to me to distance himself from me. He told me that the bill was completely flawed and it was going nowhere. And he was on a very tight schedule and he had to go. And he walked away from me. That’s incredible. So, I was genuinely mortified. I was left there standing, he had just said his few words and walked away from me. And I actually just started to cry. The tears were in my eyes. I literally stumbled back to the table. My friends and family were saying: “What happened to you?” and I told them. So, I grabbed a pen and a piece of paper, ‘cause before I had met him, I had considered talking to him directly. But I think I was nervous to do so. But after he spoke to me like that, I decided that’s fine. If that’s the way he’s going to talk to me I’m going to talk to him from the stage. So I amended the few words I had made. So that’s how I got up on the stage and spoke to him directly. I also met him another time after, when he attended a meeting at the Castle Hotel inside in Macroom and on the previous day a mother had contacted me begging me for information for medical cannabis to help her child and she had sent me a message about the child who had had fifty seizures the previous day. And when I went into the meeting room, I went over to Leo and I asked him again for his help. And I showed him the message that the lady had sent me and he didn’t flinch. Really? So, he said to me inside in Macroom, “I thought the medical profession was dealing with that”. And that was all that he said.
And I was asked to step away from him then after that. I’m so sorry that you were treated that way. Well, I can assure you Richard that I approached him as one should approach anybody. I approached respectfully. I was in no way threatening or anything like that. And that’s the response that I got. So Leo has been… he’s not somebody that I’ve been in consistent contact with. He’s not exactly been an ally to you. No. Certainly not, no. Your #TalktoVera hashtag has been trending on Irish Twitter. Can you tell us some more about it and what you hope it will achieve? I put up a few posts about the delivery of the medication and so forth. And somebody said to me, just last night, that it was fine to be putting up Twitter posts, but you needed a hashtag to get trending.
I know what she means, but I didn’t have a grasp on how many mentions you needed on Twitter for something to trend, d’you know what I mean? So, I asked people last night to use the hashtag #TalktoVera, because I’ve been trying to get on to Stephen Donnelly (current Irish Minister for Health). I’ve requested a meeting in any format; Zoom, a telephone call, at any location, whatever suits, you know? To be as reasonable as possible. And I’ve been trying to do that since September I’d say. That’s appalling. And he hasn’t replied in any way, has he? Well, to be honest with you. Before he became the Minister for Health, he had contacted me. I had spoken to him a couple of times on his mobile. I have his mobile number. But since he became the Minister, he will no longer engage with me or speak to me on the telephone. So that’s disappointing, because he would have spoken to me prior to being the Minister. So he would have easily had a measure of me and the way I speak and so forth. So I’m not new to him.
But no, there’s been no meeting. I’ve tried contacting numerous other politicians to get attention surrounding getting the delivery of Ava’s medication made permanent. But we needed something on social media to highlight the issue. So we were using the hashtag #TalktoVera. And it started trending last night and I thought it was funny. Vera giggles It was trending last night with Joe Biden, Jesus Christ and Mary Robinson. Richard laughs That has to be a sign Vera, you’re up there with the greats! I just laughed and thought, “God, I’m in good company”, you know? Well that speaks volumes about how the everyday people of Ireland feel about you. Well Richard, I have an awful lot to be grateful for the everyday people of Ireland for. ‘cause without ‘em, I might be without my girl, you know? That’s the bottom line. ‘cause the support for her… Her birthday is this week, right? Yeah. And we got a card last week. Her birthday isn’t until the week coming, but a lady sent a card and I just thought: “After all these years, she’s still in people’s hearts. People are still sending her cards and thinking of us.” And I put up a photograph of the card and I mean the messages…. Message, after message, after message, and the support… It’s just incredible. And it makes you wonder, “What is it that is holding the government back?” Because the public support for the introduction of medical cannabis is there, it is there. I would say it’s a majority for sure Vera, yeah. I agree, I think so. It’s just taking such a long time and so much effort to move this forward and it’s moving so slowly. Surely if you have that much public support from people around Ireland, then it’s only a matter of time until you succeed. I hope so. Because we have a problem with delivery (of medication) at the moment. But I will always try my best to highlight the issue for as long as anybody is interested in talking to me about it.
Because I’m proud of Ava and in a way, I’m proud of cannabis, if that makes sense? Because it saved her life. And you need to share the information, because there’s other little people. There could be somebody just today, at four months of age, that has their first seizure. And there’s another family starting on this road of dealing with chronic epilepsy. That could be starting as we speak. And so you’ve got to share the information and you’ve got to try and help people. I owe it to the people that helped Ava to continue and highlight things. Thank you for everything you do. You should be proud of yourself as well, above all else, for helping your daughter so much. Thank you very much for lending me some of your time for this interview, I really appreciate it. Thanks for talking to us, bye.
* Vera’s book, For Ava, can be purchased here from Mercier Press:
1 The Cannabis Voices podcast recently had Vera on for an interview which can be found at this link:
2 More can be learned about Professor Michael Barnes here: