Alicia Maher is a University of Limerick PhD Candidate in Law, writing a paper on the regulation of medicinal cannabis in Ireland. She talks about her history of chronic pain, her difficulties accessing medical cannabis, the Medical Cannabis Symposium she helped organise at UL last year and more.
Twitter: @alicialmaher
Hi Alicia, thanks so much for joining me. Your chronic pain story began in 2001, when you were seventeen and went to get your tonsils removed. That’s right. And from there onward, you had a host of complications, which we don’t need to go into. But maybe you’d like to tell our readers a little about what happened next and why you later began to use cannabis? I ended up having to get a bag on my stomach and I was supposed to get it reversed in 2006, but I got precancerous cells. And after the operation, I got 1MRSA (Methicillin -resistant Staphylococcus aureus) and my coccyx bone was broken. So that was the start of the 2chronic pain that I had. From there until about 2012, it was just all medication and stuff. I was taking medication probably for about six years, and then I got referred to a Pain Specialist and it was actually him that found out that my coccyx bone was broken and that that was where the pain was coming from.
He gave me injections into my back every three months and different medication up until about 2018. That year, I was taking thirty opioids a day. I had pain patches on my back all the time and I was still getting the surgeries every three to four months, but it just wasn’t working anymore. The pain just got way worse, so I decided then to try cannabis. And a friend of my husband’s sent over a vape cartridge from New York, ‘cause he was able to get them over there, and I tried it and it worked straight away for the pain. So I decided then that I was gonna come off medication, because there was no point being on them. The side effects… it just wasn’t worth taking them anymore. I was just sleeping all the time. You have no quality of life on them at all. So I used the vape from 2018, started coming off all the medication and when I had come off half the medication, I told my Doctor that I was using cannabis and he was absolutely delighted.
He said: “The first thing is, do no harm”, and he saw how the opioids were affecting me and he didn’t want me taking them either. So he said that he’d support my application for the medical cannabis licence. At the time, in August 2018, the Pain Consultant that I had been with since 2012 stopped working for the HSE (Health Service Executive). He went private. So he was no longer my Pain Consultant at the exact time I needed him to sign the licence. When my Doctor sent off the application, they wrote back and said that they weren’t declining it on the basis of chronic pain. They were denying it on the basis that I didn’t have a Consultant. And because that Consultant had just left the department, they were not taking more appointments. That’s right, yeah. I got another Consultant in the end, but it took till December 2019 to see him.
By that time, we’d moved to Spain. We’d moved there in November 2019, but I knew I’d be going back in a month to meet the new Pain Consultant. I told him the exact same thing and he said that he’d support my Doctor’s application, even though it was his first time meeting me. Thank God for that. Yeah, that was how I’d gotten the licence then, in the end. That was through him. You put out a Freedom of Information request in June. Yes. You tweeted about it on June 19th, asking exactly how many medical licences had been granted by the Department of Health since the Medical Cannabis Access Programme (MCAP) was launched in 2017. At that time, they’d only issued thirty-two. Are you aware of any significant increase in that number since then? No, I think it’s at about forty at the moment. You know when they say in the media, “There’s been seventy licences granted”? That includes repeat licences, so that could mean three licences for one person. At the time, you were also aware that there hadn’t yet been any licences granted for cultivation in Ireland. Yeah, they’ve not granted any for that. You helped organise a Medical Cannabis Symposium in UL (University of Limerick) in September last year. Yeah. You were a speaker at it. How did that go for you? I’m doing my PhD in the School of Law at the University of Limerick and it’s on medical cannabis as well, the regulation side of it. So I emailed Gino Kenny (People Before Profit TD and cannabis decriminalisation campaigner).
This was after I’d started coming off the tablets and the medical cannabis was working and I was delighted. I’d asked him if he had any events coming up, or anything that I’d be able to go to. And he said that “There’s none at the moment”, but that he was thinking of setting one up. So I said to him then if he would consider having it at the University of Limerick, and that I could ask the Professor of the Law Department there. So I went to the Head of the Law Department and I asked him, cause he knew everything that was after happening with me and he supported cannabis and all that. And he was absolutely delighted, so he said: “Yeah, work away”. We started off with fifty people. Then we put up tickets and there was huge interest in it. We ended up having to get a room for over two hundred people. Fantastic, considering it was relatively short notice in terms of organising it. Yeah, it was. It was February I think, when we started organising it, and then we had it in September.
Did you get any interesting comments or stories from people who had seen you talk? Was your talk primarily about your own experiences applying for medical cannabis access? My talk was primarily about how it worked for me for chronic pain. And it was highlighting that we needed access under MCAP for chronic pain, because it wasn’t included (under the accepted conditions to qualify). A lot of people were actually crying! Alicia giggles That is an interesting response! It was so nice! It was so much better than I expected. The whole day went absolutely brilliantly. But the people, they stayed around for hours afterwards, chatting to each other and to me. Saying that they found it such a comfortable environment. People in the crowd stood up and shared their stories on the day as well, even though they weren’t supposed to, you know? So we just had an open floor and everybody was talking about how it impacted their families and.. yeah, they said it was just so nice to have such a supportive environment. That they had never been to something like that before where they could just talk freely. Even though it was a Law Department, you know? And it’s still illegal and we were all getting it from the black market.
That’s fantastic that it went so well, I’m delighted that it did. Has there been any talk since then of a follow up, even loosely? Yeah. After that one we had arranged, we were gonna do another one, but then… Covid. But I’d love to do a follow up. Covid really threw a spanner in the works! You’ve been based in Spain since the pandemic kicked off and there was lockdown for quite a long time in Spain. Have you been back to Ireland since then? I went home for my husband’s graduation in February. Congratulations! We only went home for a couple of weeks. Came back to Spain then, but we were planning on going back home again in April, full time. So then we went into lock down on the 13th of March. I rang the Doctor and I was like, “What will I do, because of my underlying condition?” Would I get on a plane and go home, or should I stay in Spain? Yeah. And you were concerned as well about exactly how EU laws are, in relation to travelling with prescription cannabis. That was afterwards actually, I wrote to him (the Doctor) about it. He told me I’d be better off staying in Spain.
We were in lockdown before Ireland was I think, and it wouldn’t be worth the risk travelling home. Plus, they didn’t know what was gonna happen with the medical cannabis licences. I don’t think they had collected any for anybody at that stage, so if I went home I would have had to get it from the black market again. Which was the whole point of coming here in the first place. So yeah, we decided to stay here! There was another issue with the licence as well. I have the licence and I have the prescription. And my prescription is for twenty grams of cannabis flower a month, from Bedrocan (a global medicinal cannabis producer). At the moment, they only have one 22% THC available, and it’s a sativa. Whereas, that makes the pain worse for me and the one that I need is an indica. So even though I have the licence, I can only get one strain from one place in Europe.
And according to a tweet of yours on June the eighth, that’s costing nearly €2000 every three months, is that right? That’s how much I was told it was costing. I didn’t pick it up myself yet, so I don’t know the exact figure. And you were saying that in Spain, one seed is about €7. And you’re allowed to grow a personal amount over there. And there’s cannabis clubs. Yeah. Have you met with other people with similar circumstances to yourself, who would have also gone to Spain, for that sort of reason? The only person I knew of that would have gone to Spain as well is 3Kenny Tynan. The man behind 4The Cannabis Patient Podcast. Yes, that’s him. He was using it to treat a brain tumour, I believe. And he used the Treatment Abroad Scheme (TAS) and went to the Kapala clinic in Spain and had his treatment there. He lived in Spain for a good while and joined a cannabis club. Same thing as me, he used to get his cannabis there and he used it for seizures. And I think it’s controlling them now.
That’s fantastic. You’ve said before that the Department of Health was willing to send prescriptions from the Hague (in The Netherlands) to Ireland, during lockdown. From April, they had the courier service. And you found out that they were willing to send prescriptions, but that they then decided that they weren’t going to pick up all of the CBD-only products for people, because of a technicality where people who only need CBD don’t require a licence. So they weren’t obliged to pick them up and bring them back. Yeah, that’s right, that’s exactly what happened. Because they didn’t need the Ministerial licence. Somebody decided: “We’re not gonna pick that up”, even though they went all the way over to pick up the ones with THC. And the courier service was only available for people who were able to pay around four grand up front for it?
Yes. So, Kenny Tynan’s prescription is around €4000 every three months, paid up front. For the first three prescriptions, they actually covered the cost for him, but then they decided to change the goalposts and told him that he no longer qualified to have it refunded. Now I’m sure like me, he probably has a medical card if he has a long term illness. But they’re refusing to cover it on the medical card for everybody, so… it was only the people that paid for it up front who they would deliver it to. So then a load of people had to do fundraisers. Do you know about 5Pamela Fowler? Yes. Her son Ryan has a prescription. He has the licence for a large tumour in his back and he uses it for chronic pain as well. She and Kenny, when they found out about the courier service, they couldn’t afford it. So they set up a fundraiser so they could get their stuff sent over.
The government recently announced that there were budgetary constraints. I suppose that ties into why they decided not to pick up all of the CBD products… Have there been any developments from them since then? Because I see a lot of people saying that they won’t respond to them online. They don’t seem to be giving people many answers at the moment. No, absolutely not.
I’ve been emailing Stephen Donnelly (Minister for Health) for weeks and weeks. I haven’t even gotten an acknowledgement. I’ve told him I’m here in Spain, have a prescription, the product doesn’t suit me. And… nothing back. So, they did another (prescriptions) collection recently. But the budgetary constraints thing was an email from Stephen Donnelly to Gino Kenny. That was about the MCAP itself. They said they’re trying to negotiate the price with the supplier and that he had no date now for the MCAP. So everybody that wants access has to still go down the Ministerial licence route. Even though the legislation was signed by Simon Harris (former Minister for Health and current Minister for Further & Higher Education, Research, Innovation & Science) last June, it’s still not operating and now they have no date for it. Wonderful. That was only this week that Gino Kenny put that up actually, that there’s no longer a date for it to commence. It’s astonishing really. It is.
I saw you mention on the 2nd of September that the costs for your cannabis prescription each month were less than what the opioids and pain treatments would’ve cost you previously. Your Consultant and GP aren’t willing to cover the cost of your cannabis anymore. But they will cover the opioids and more expensive medications. Yeah, that’s the HSE for you. They consulted with the Doctor, they were happy to prescribe it. They were happy to prescribe the opioids and everything was covered on my medical card. ‘Cause that came to thousands every month. Their excuse was that they won’t cover the cost of cannabis because it costs more, when it turns out that it’s actually cheaper than opioids. That’s very strange. That’s what I wrote to Stephen Donnelly as well, that it’s actually gonna cost them less now that I have a prescription for cannabis, than it was gonna cost for hospital stays and medications. But again, I haven’t got a reply.
Are you planning on staying put in Spain for the foreseeable future, for pain management? Yeah, I’d say we will. The thing is, my husband’s doing a PhD as well and he’s almost finished, so he obviously would like to be back home to finish that and I’d love to be back home in the University, doing my work there too. Of course. It’s so hard doing it away from home and being away from everybody as well. I’ve never been away from home for as long, so that bit is really hard. But I think we’re gonna stay till next year at least, because if I go home now the prescription is useless, ‘cause the sativa drives my heart crazy. It doesn’t work for the pain, so I’d be buying it off somebody on the street again. I’d prefer to be growing my own, but we all know what happens then! Mm-hmm.
So, we’re gonna just stay. I was lucky enough. During the pandemic, on the 13th of March, all the cannabis clubs closed. So I was like, “Oh my God, what am I gonna do?” I had one day, so I could go in and stock up. But you’re only allowed buy three grams a day in the club. So my husband joined. He got three grams, I got three grams. I probably had about three grams at home. They were closed for three months and all I had was six grams at the start, but somebody put me in touch with a medical cannabis clinic in Spain. Thank goodness for that, ‘cause I’d say you were tryna make that last! Oh, I was absolutely terrified of running out! The cannabis clinic took me on, on a discretionary basis. They told me I couldn’t tell people the name of the clinic if they took me on. I sent them my licence to prove that I had it, but the licence is only to import into Ireland. So my Doctor sent them my prescription as well, just to say that it was twenty grams of indica a month. And they posted it to me, they post it every month. So it’s much better than at home. It’s amazing, someone in a different country is willing to help you more than your own government. It’s absurd.
It’s everywhere in California. They have their issues with the taxes and fees they have to pay to run legal cannabis businesses. But there’s no shortage of it over there and you can get it for a whole host of conditions, it really makes you wonder why our government is taking so long to implement and expand upon MCAP. It puts us to shame, really. It does. It’s been nearly five years since 6Vera Twomey walking to Dublin was in the media in Ireland, and still nothing. Is there anything you’d like to say on a final note to the government, or to other people in Ireland that might have a similar situation to yourself? Without sounding too pessimistic…I don’t think MCAP, even if it is commenced, is working. It’s not broad enough to include enough people. It’s only for three conditions – epilepsy, MS, or nausea and vomiting with chemotherapy. Simon Harris asked the HPRA (Health Products Regulatory Authority) to conduct a report to see if they should bring in the Medical Cannabis Access Programme, so they were the people that recommended it for three conditions. In that 7report (published in 2017), they actually acknowledge that there’s good evidence for cannabis for chronic pain.
There’s more evidence for cannabis working for chronic pain than there is for it working for epilepsy. But they said the reason that they didn’t want to include chronic pain was because… There were lots of reasons. They said it could be psychological, there’s loads of different factors that affect chronic pain. And they said there’s loads of other treatments out there for people with chronic pain such as physiotherapy, seeing a psychologist…
They didn’t include it for policy reasons, which is absolutely ridiculous. And then afterwards, Simon Harris said that if more evidence became available, they would keep it in mind and that they could potentially add chronic pain. But they know that the evidence is already there, you know?
As you pointed out before, that’s similar to the guidance from the NICE (National Institute for Health and Care Excellence) 8draft report on chronic primary pain in the UK. They recommended not to use opioids, non-steroidal anti-inflammatories, benzodiazepines and all of that. They recommended things like antidepressants and CBT (Cognitive Behavioural Therapy), but they still didn’t recommend cannabis. That was it. They’re taking all the stuff away from people that are in chronic pain, but they’re not leaving them with a solution really. I mean, antidepressants for chronic pain. I tried them. They just didn’t work. Not to mention that a lot of opioids are highly addictive. Just look at the opiate epidemic in the United States. They’re trying to get away from opioids, but they’re just not giving any other solutions. It’s sad really. It is. Especially when you see how damaging opioids can be.
It was awful trying to come off them, it was horrendous. I’d never ever want to do it again. ‘cause it took me a long time to come off them as well. They can give people severe withdrawals, you hear horror stories. I was on five medications, four of them were opioids. I think it took about nine months to come off them all and that was actually too fast to do it. But it was withdrawals the whole time, and I had withdrawals up to a couple of months ago with them. And since you began to use a vape pen in 2019, the ones you were taking were down from initial prescriptions of over thirty medications, including opiates. I was taking thirty tablets a day. And I first tried the vape pen in November 2018. I started coming off the tablets straight away and I was fully off them by June 2019. So that’s nearly nine months, but the effects still last for way longer than that. But I think the cannabis probably helped with the withdrawal symptoms as well. I suppose we’ll leave it at that Alicia! All the best to you and your husband with the PhDs. I really hope that you get word back from Stephen Donnelly and fingers crossed the government will truly get to work with MCAP. It was lovely talking to you. You too! Thanks Alicia. No bother at all. Bye!
References:
1 More information about MRSA can be found here: https://www.cdc.gov/mrsa/community/index.html
2 The Irish Examiner covered Alicia’s chronic pain in more detail in this interview:
https://www.irishexaminer.com/news/arid-30926278.html
3 Check out Kenny Tynan‘s interview with us at this link:
https://greenlensblog.com/2021/01/14/kenny-tynan-6pm-07-01-2021/
4 The Cannabis Patient Podcast can be found at: https://anchor.fm/thecannabispatient
5 Pamela Fowler’s GoFundMe page from April of this year, which describes her son Ryan’s chronic pain
condition and their difficulties getting him medical cannabis with current government policies in place:
https://www.gofundme.com/f/help-to-get-ryan-3-months-of-his-medical-cannabis
6 The HPRA’s report can be accessed at this link: https://bit.ly/3yZdzFy
7 Check out Vera Twomey‘s interview with us at this link:
https://greenlensblog.com/2020/11/25/vera-twomey-cork-21-11-2020/
8 The NICE draft report can be found here:
https://www.nice.org.uk/guidance/gid-ng10069/documents/draft-guideline
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[…] rightly mention allowing medicinal cannabis use for chronic pain conditions; countless people suffering with chronic pain can attest to its importance in their lives. As has […]