Award-winning campaigner Alicia Maher is doing a PhD in the regulation of medical cannabis in Ireland, but she’s had to move abroad to access her life-changing medication.
Alicia Maher has one of those unimaginable stories. When she went into hospital to have her tonsils removed at the age of 17, she never expected to leave more than six months later with a lifelong disability.
After what should have been a fairly standard procedure she suffered hemorrhages in her throat and had to undergo several more surgeries. Then, while recovering in hospital she started bleeding from her bowel and doctors discovered Alicia had ulcerative colitis, a form of inflammatory bowel disease.
Things escalated quickly and one night her large intestine burst and she was rushed into emergency surgery.
The intestine had to be removed and Alicia woke up with an ileostomy bag.
“This was 2001 – I hadn’t heard of ulcerative colitis or crohn’s at the time,” she says now.
“I didn’t even know what an ileostomy bag was, I just woke up with it. For years I went to counselling and to try and accept it.”
The procedure was always supposed to be reversed, but in 2006 precancerous cells were discovered in her rectum and it had to be removed, meaning the stoma was permanent.
It was following further complications after surgery, that the chronic pain started.
“After that operation was the first time I started having chronic pain and it never went away,” she says.
After six years of being prescribed painkillers and patches Alicia was referred to a pain specialist who discovered that the cause of her pain was a broken coccyx.
She was offered surgery, steroid injections, and more medication. And then, if that wasn’t enough, in 2015 she developed sciatica.
By this point Alicia was on up to 30 tablets a day, from paracetamol to heavy opioids such as tramadol.
“They just kept adding more and more medication and it went on like that for years,” she says.
“The side effects of the medication had become absolutely horrendous. I missed a lot of time off university because as soon as I got up I’d have to take 10 opioids, and I’d be asleep again within half an hour.”
She adds: “It really affected my breathing so I couldn’t really do much. I had absolutely no quality of life.”
In November 2018 Alicia tried cannabis for the first time when a friend from New York sent her some oil and a vape cartridge.
“It worked straight away for the pain and I decided there and then that I was going to come off the medication,” she says.
“I didn’t know what was going to happen or whether it was going to get rid of the pain altogether, but I slowly started to cut down on the tablets.”
After she had been able to reduce her medication by half, Alicia broached the subject with her doctor, who was supportive and agreed to apply for a ministerial license to prescribe medical cannabis.
However the licence needed to be signed off by her consultant, who at the exact same time left the public health system to go private.
Alicia explains: “I no longer had a pain consultant and because I’m a public patient it took until January 2019 to be referred to another one.”
Although he agreed to sign it off, the process had taken so long that in November 2019 Alicia and her husband left their home in Limerick – where they were both studying PhDs – to move to Spain, where she could more easily access her medication.
“At the time I was just buying cannabis illegally and sometimes it would work and sometimes it wouldn’t. I never knew what strain I was getting or how strong it was,” she says.
“We knew that they had cannabis clubs in Spain and that I’d be able to go in and buy it, so we agreed that we would move until I got the licence through.”
Alicia continues: “It was really hard, we literally had to leave everything, our apartment, our family and friends.
“It’s worth it, knowing that we can access cannabis here but there’s a huge downside. We expected to be home a lot sooner.”
Alicia’s licence was approved in May this year, but due to the coronavirus outbreak the couple have been unable to return to Ireland.
“The doctor advised me not to travel due to my underlying health conditions. Now we don’t know when we’ll be able to get home,” she says, desperate to return to Limerick and finish her PhD thesis on the regulation of medical cannabis in Ireland.
Inspired by her own battle, Alicia hopes it will help influence legislation around medical cannabis in the country.
Ireland launched the Medical Cannabis Access Programme in June 2019, allowing consultants to prescribe to patients that have failed to respond to treatments for spasticity associated with MS, intractable nausea and vomiting associated with chemotherapy and severe, refractory epilepsy.
But so far no one has been prescribed cannabis through the scheme.
Patients can also apply for a ministerial licence, as Alicia has, but often the Government won’t refund the costs, leaving them to pay for it themselves.
“First and foremost I’d like to see the Medical Access Programme up and running for patients who are waiting and I’d like it to be expanded for other medical conditions,” says Alicia.
“Chronic pain currently isn’t included, but I’d like to see it go even further than that, where there’s evidence from other countries about its efficacy for certain conditions.”
She adds: “I’d love for my PhD to have some influence on the programme – my second chapter is showing the medical evidence that is available for a wide range of conditions.”
Alicia has organised a number of medical cannabis conferences, including an event for over 200 people at the University of Limerick last year, attended by leading politicians and prominent campaigners such as Alfie Dingley’s mum Hannah Deacon and Vera Twomey.
She continues to advocate for wider access and acceptance, even winning a Cannabis Award for Outstanding Patient this summer.
“It was really nice to be recognised, but it’s just sad to see that there has still been no progress,” she says.
To say Alicia’s life has been shaped by medical cannabis is an understatement. Does she ever wish things had taken a different course?
“I struggled with it for many years, but I’m happy now with how things have turned out,” she adds.
“Since I started taking cannabis it’s like I have returned to my old self, to how I was before I was sick.”
Now she’s just holding out until she can return home.
How CBD could help you quit smoking
With some research suggesting it helps reduce nicotine cravings, is CBD the key to kicking the habit for good?
Smoking kills – more than eight million people a year to be precise, according to the World Health Organisation (WHO).
In the UK alone, the NHS estimates around 78,000 people die from preventable deaths caused by smoking, with many more living with debilitating smoking-related illnesses.
If there was ever any doubt, the outbreak of Covid-19 – a respiratory virus which causes breathlessness and a persistent cough as two of its most common symptoms (just in case you’ve been living under a rock this year) – has exposed the risks smokers are leaving themselves open to.
An analysis by the WHO earlier this year found smokers are more likely to develop severe disease from COVID-19 than non-smokers, while Public Health England has suggested smoking is a significant predictor of disease severity, with smokers 14 times more likely to develop severe respiratory disease.
But as anyone who has tried to kick the habit will know, it’s easier said than done.
Can CBD help?
Findings published earlier this year by The Cannabis Radar, suggested, not for the first time, that CBD could be the solution.
The results, from a 700-person survey in the US showed that almost half of participants were able to abstain from cigarettes by using cannabidiol.
Participants were asked to inhale or consume CBD whenever they felt the urge to smoke, with 42 percent reporting that they were able to abstain from cigarettes for a month.
While there is plenty of anecdotal evidence, the scientific research into CBD’s effect on tobacco addiction is limited – but still promising.
A 2013 report explored the effects of replacing cigarettes with CBD in a week-long study. The results revealed that those participants given a CBD inhaler to use every time they felt the need to smoke, reduced their number of cigarettes by 40 percent.
As Matt Picken, of 7CBD explained, most smokers are addicted to the chemical nicotine. This triggers the release of the feel-good hormone dopamine in the brain and is to blame for cigarettes being so addictive.
It is thought that CBD can actually reduce nicotine cravings by rebalancing the body’s endocannabinoid system (ECS).
Consuming CBD kickstarts the ECS and produces endocannabinoids anandamide (AEA) and 2-AG, says Matt, which naturally increase dopamine levels and reduce the cravings of dopamine spikes caused by nicotine.
What do the experts say?
“In very simplistic terms, CBD works by helping to bring the body back into balance,” said Ruby Deevoy, a CBD and cannabis journalist who has covered its effect on smoking extensively.
“Addiction, of any sort, throws your body out of balance in lots of different ways – emotionally, physically and mentally. The hope is that CBD can help with that.”
CBD is also thought to regulate cortisol release, the hormone produced by the body in response to stress, and could be helpful in reducing ‘stress-induced relapses’ which lead smokers to reach for the cigarettes, according to Ruby.
“The CBD molecule directly activates serotonin, opioid and dopamine receptors all of which play an important role in altered neuronal function and behaviour which goes hand in hand with addiction,” she continued.
“Numerous studies have shown that CBD holds great potential when it comes to quitting addictive substances, with research into cigarettes, alcoholism and other drugs yielding positive results. There’s still a long way to go in understanding why this is, so there are no official answers yet, but there are some good theories that are being investigated further.”
Dean Billington, chief scientific officer at BRAINS bioceuticals, one of the few companies in the world producing CBD as an Active Pharmaceutical Ingredient (API), also told Cannabis Health there are several indications that CBD could be effective in smoking, alcohol and even opioid cessation.
“It’s all at the very early stages but there are some interesting results coming out of some of the studies that are being conducted,” he said.
“What we know is that CBD reduces your levels of anxiety and stress, and therefore, perhaps reduces the need to subsequently take a cigarette.
“There is also some evidence that CBD can be used in alcohol cessation and as a mechanism to wean people off opiates, in areas where it is of particular interest, such as in the US where opiate addiction is a huge challenge.”
One of the significant benefits of using CBD to manage addiction, is that it is non-addictive itself, with no evidence that it causes any side effects, continued Dean.
“There’s no evidence to show that CBD taken in any level of concentration is addictive, or indeed that it has any side effects, or that anybody has ever overdosed on CBD,” he added.
“When you reach a plateau, as you continue to increase the concentration of CBD, it actually starts to take less effect.”
A safer alternative?
For those still tackling cravings, CBD brand V&YOU has recently brought out its own range of Nicotine Pouches to offer smokers and vapers a safer way to get a hit, while they try to curb the habit.
The pouches, which are billed as a less harmful alternative to smoking, consist of a small cellulose bag filled with cotton fibre, flavour and nicotine, which can be placed between the lip and your gum for up to 30 minutes.
V&YOU founders believe they could play a significant role in helping people quit, in the same way that snus has – a moist, powder, smokeless tobacco product which originated in Sweden.
Co-founder & CEO Titus Wouda Kuipers said: “V&YOU Nicotine Pouches are aimed at people who already use nicotine in vapes or cigarettes and are generally seen as a less harmful alternative to smoking. This is the biggest driver for smokers looking to quit smoking, all of whom will know the health risks associated with the habit.”
According to Karl Erik Lund, PH.D, research director of the Norwegian Institute for Alcohol and Drug Research, snus has become the most popular smoking cessation method among smokers in Norway.
Titus added: “In the same way as snus – which is estimated to be more than 95 percent less harmful than smoking – nicotine pouches could play a key role in helping smokers to quit the habit.”
Epileptic sisters fight for medical cannabis equality
Siblings Chelsea and Tamsin Leyland both have epilepsy, but only one of them has access to life-changing medical cannabis. DJ and activist Chelsea, tells Sarah Sinclair about the fight to save her sister.
Chelsea Leyland had always been the ‘healthy’ sibling.
Growing up she saw her elder sister Tamsin rushed in and out of intensive care, having been diagnosed with intractable epilepsy as a baby.
The condition had already been a part of Chelsea’s life for as long as she could remember, when she started displaying symptoms herself aged 14.
“At the time no one knew them to be symptoms,” says Chelsea over Zoom, from her home in New York.
“I noticed when I was in the car and the light would come through the trees and flicker on my eyelids that I would get a strange sensation in my head, and I started to have what I now know are myoclonic jerks in the morning.
“They would happen more frequently when I was tired and on school days where I was feeling a little bit more stressed.”
The symptoms worsened and at the age of 15, Chelsea was diagnosed with juvenile myoclonic epilepsy (JPE). She and Tamsin both carry a mutation in the CPA6 gene, often identified in certain forms of epilepsy.
“I was always the cognitively healthy sibling, so it was a real shock for me and my family, because we had been on this emotional roller coaster with my sister,” she says.
“To go through life believing there is nothing wrong with you, to then find out that you have this horrific condition that you’ve seen your sibling suffer with was very challenging.”
She was put on a number of anticonvulsant drugs, but although they did improve her condition the side effects were debilitating. Throughout her late teens and 20s, she experienced insomnia, extreme depression, anxiety and hyperactivity. She describes it as living in ‘fight or flight mode’.
“My nervous system was a complete mess,” Chelsea says.
But on the outside, she was carving a successful career as a DJ and model. She had moved to New York and was becoming well-known in the fashion crowd, with friends in high places and a huge following on social media.
Chelsea was at the Glamour Awards, listening to women give empowering speeches about their philanthropic work, when realised she wanted to use her platform for something positive.
There was never any doubt about what that would be.
“I had been working in what felt like quite a superficial world for some time,” she says.
“I remember hearing all of these incredible female speakers who were committing their life to being of service. I went home that night and thought I have to use my platform for something good and what else to feel drawn to, but epilepsy?”
She continues: “There’s a stigma about epilepsy and the way I was brought up was to keep it ‘hush hush’.
“I was in the fashion world and there were ways I could bring a different colour to the conversation, so it wasn’t just doom and gloom, which was how it felt when I was growing up.”
And so she turned her Instagram account – which now has more than 61K followers – into a platform for her activism.
“I didn’t have a million followers, but I did have a platform and a voice, and that could be powerful,” she adds.
Chelsea discovered cannabinoids around four years ago (medical cannabis was legalised in New York in 2016), through Sanjay Gupta’s famous CNN film about Charlotte Figi and how CBD was treating her intractable epilepsy.
“It was mind-blowing to watch,” she says.
“I had seen my sister having daily seizures for so long that it was hard to comprehend that a little bit of plant oil could be an efficacious form of treatment.”
But when she tried CBD through a friend and cannabis activist, she noticed its effects instantly. After six months of using cannabis, against her doctor’s and family’s wishes, she weaned herself off all of her pharmaceutical drugs.
She uses a full spectrum cannabis oil, containing one to one ratio of THC and CBD, and now has been seizure free for three and a half years. She has even reached the point where she is able to take the occasional day off from medication completely.
“To say cannabis has kind of transformed my life is an understatement,” says Chelsea.
“It was already such an incredible gift that I was able to wean off pharmaceuticals, but now to get to a point where my body is in such balance that I’m able to miss a day is quite remarkable.
“It’s quite painful to imagine what life would be like without it. I still struggle everyday living with this condition, even though I’m not having seizures, there are so many other elements of epilepsy that one has to battle with daily.”
She adds: “I felt like I couldn’t cope when I was on the medication, but cannabis allows me to feel like everything is going to be okay in those moments.
“It doesn’t just treat my seizures, it also helps my sleep, stress, digestion, anxiety, it’s a very dynamic medicine. My life would not be in such a good place without it.”
This is a truth that, sadly, Chelsea and her family know too well.
Her sister Tamsin, now 37 and living in an NHS facility for people with severe epilepsy in the UK, does not have access to this life-changing medication, despite it being legalised in 2018.
Clinicians believe there is a good chance that medical cannabis would improve Tamsin’s quality of life, as she and Chelsea share the same genetic mutation. But until doctors are able to prescribe it on the NHS, she will never know.
“It’s hard to articulate how unbelievably frustrating it is,” says Chelsea.
“It’s absurd that we are in this position where vulnerable patients like my sister – who we are struggling to keep alive – can’t access a plant extract, which could potentially be a life-saving form of treatment, due to her geographical postcode.
“Tamsin has severe brain damage from having seizures since she was a baby, we’re not looking for a miracle as a family. We’re just looking for some relief, and potentially a better quality of life.”
Chelsea’s activism has naturally transitioned into medical cannabis advocacy. For the last two years she has been working on the documentary, Sisters Interrupted, which began life as an exploration of the medical cannabis space but ended up an intimate tale about two sisters and what it looks like when one is prevented from having the medicine she needs.
“Even though Tamsin is five years older than me, there was a time where I mentally outgrew her, so she almost feels like a little sister,” Chelsea says.
“As she is living in the body of an adult there’s less concern, but we need to remember that these patients are someone’s mother, someone’s father, someone’s daughter, someone’s sibling.
“It shouldn’t matter how old they are, we still want to keep them alive.”
Having started work on the documentary before the UK law change, Chelsea says it was a ‘big moment’, but ended up leaving her feeling ‘defeated’ and ‘disheartened’.
“We were celebrating that day, we really believed that our hard work and the work of all of the advocates who had come before us, had paid off – but it ended up being anticlimactic,” she says.
“I’m a fighter by nature, so it fuelled the fire and we realised this was going to be a much bigger fight than we thought.”
Chelsea might be a fighter, but she is also a realist and after more than three decades of watching her sister suffer, she admits that the fight is exhausting.
“Am I losing steam? Honestly, some days it feels like I am and I wish I could say otherwise, she admits.
“But I am still fighting and just hope that it will happen in my sister’s lifetime.”
She adds: “In an ideal world, the outcome of the film would mean access for my sister, and of course on a wider scale, that everybody that could benefit from cannabis has access to a safe, standardised product.
“But even if we can’t change policies, at the very least I hope that my sister and I sharing our story will touch the lives of other people and help anyone struggling with this condition feel that they’re not alone.”
Sisters Interrupted is due to be released soon. Follow @cbd4epilepsydoc on Twitter for updates and visit www.separatingthestrains.com
Follow Chelsea @chelsealeyland
“We’re the party for cannabis consumers – they just don’t know it yet”
Scotland’s youngest Lib Dem councillor and mental health activist, Ben Lawrie, tells Sarah Sinclair why we need cannabis law reform in the UK – but first access to cannabis-based medicines on the NHS.
At a Liberal Democrat party conference in 2016 members voted for a policy motion to create a regulatory framework for cannabis.
Ben Lawrie didn’t get a chance to speak at the time, but later shared his view on the legalisation of cannabis for recreational use on the Liberal Democrat Voice website.
In it, he referred to the US state of Colorado, which legalised cannabis in 2014. Within months it raised $10 million dollars in tax revenue, crime dropped by 10% and unemployment at its lowest since 2008.
‘You don’t have to smoke weed to feel the benefits of legalisation’, he wrote.
Elected to represent the Monifieth & Sidlaw Ward on Angus Council in Dundee in 2017 at the age of 22, Ben Lawrie is Scotland’s youngest Liberal Democrat councillor and parliamentary candidate for Angus South in the 2019 General Election.
It was his mental health activism which led him to politics. Having experienced depression and anxiety – along with many of his generation – he began campaigning to raise awareness and call for better-funded mental health services.
But one of the reasons he is proud to be a member of the Lib Dems is their policies on the legalisation of cannabis.
“We fully support the legalisation of cannabis for both medical and recreational use and I think that is the right approach,” says Ben, over Zoom.
“We would have the same amount of people using it, regardless of the law, but if you legalise it you can control it, you can make sure that criminals aren’t receiving funding for other more nefarious activities and you can ensure that what people are consuming is safe and regulated.”
He continues: “A lot of people who suffer with substance misuse issues are deterred from seeking help and support, because they’re engaging in illegal activities and there’s paranoia that comes with that.
“If we can be more open and more mature about cannabis, it will lead to better education and people will have much better relationships with it.”
Ben isn’t phased when asked by opposition how he can be both a mental health activist, and cannabis advocate – despite admitting that its link with mental health issues such as psychosis and schizophrenia are the reason many politicians avoid the topic completely.
“The issue of cannabis and mental health is tricky,”he agrees.
“Of course there are ways it can be unhealthy – and that’s one of the things that stops politicians talking about it – but a lot of people with mental illness gravitate towards substances such as cannabis to self-medicate.”
Ben adds: “I know people who consume cannabis for a diverse range of reasons; it helps them connect with friends, helps them sleep or helps them with a tricky relationship with food. I resent that the Government considers them criminals.”
Although he admits it might be because he lives in Dundee – widely reported as the ‘drug death capital of Europe’ – Ben believes there is a ‘huge chasm’ between political and public opinion on the subject of cannabis.
“Politicians don’t talk about it, it’s not an issue they are willing to take up and fight,” he says.
“We have had the Conservatives in power for a long time and they’re very prohibitionist, but even the Labour Party are not passionate about it. I think there’s far more acceptance of it in the public sphere.”
According to Ben, even his own party, despite its stance on legalisation, is ‘scared to be positive’ about cannabis.
“There is very much a tough law and order approach, rather than looking at health or the role cannabis can play in our environmental recovery,” he says.
“We’re the party of personal freedoms, but I suspect those who are the most passionate about cannabis advocacy aren’t in the political sphere and don’t feel represented by political parties.
He adds: “We are the party for cannabis consumers, I just don’t think they know it yet.”
Although Ben believes legalisation is inevitable for the UK at some point, he admits it is not likely to happen anytime soon. First, he wants to see wider access to medical cannabis and CBD products to be available on the NHS.
“There is a lot more sympathy for the medical cannabis campaign, but Britain is still much more timid than other countries.
“We’ve seen a shift in the law but on the ground it’s still far too hard to access,” he continues.
“I meet a lot of people who use CBD for anxiety and insomnia, but at the moment it is only available for people with the privilege and money to buy it and there’s a lot of people for whom that is just not an option.”
Ben hopes that as knowledge and awareness of the medical benefits of cannabis improve, this will lead to a wider acceptance of cannabis for recreational use too.
“I have close friends who consume cannabis not for medical use, but because it brings them peace in some way,” he says.
“I resent that they have to fear for their livelihoods and freedoms, because they are good, kind, intelligent people who contribute a lot to their communities.”
Until then, he’ll keep chipping away at the stigma.
“There are so many worthy causes that I feel like this always takes a backseat,” adds Ben.
“Unless a couple of people are willing to speak up on it, thousands of people will stay under-represented.”
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