27 Sep IRELAND. Chronic Pain Sufferers Speak Up For Cannabis

By Georgina Downes @gdownes5

There was something oddly familiar about the scenario; women calling for the right to choose while voicing their frustration at the obstacles politicians and medical professionals were throwing in their way. But this wasn’t a debate on abortion, this was a symposium on medicinal cannabis, held at the University of Limerick last Saturday.

Event organiser Alicia Maher is no stranger to publicity. She has spoken openly in the past about her deeply personal health issues. Yet, as this petite, pretty young woman took to the podium, her nerves became evident and at times, she struggled with her emotions. It’s no wonder. Her story is very difficult to hear.

Having had her tonsils removed in 2001 when she was seventeen, and studying for her Leaving Cert, Alicia suffered complications and ended up spending two months in hospital. She was diagnosed with Crohn’s disease. Then followed the catastrophic rupture of her large intestine. Pre-cancerous cells were discovered, leading to the eventual removal of her rectum. Her pain was debilitating and it transpired she had endured a broken coccyx, most likely the result of surgery. In 2016, she developed sciatica. Unable to sit, Alicia gave up work. For 13 years, she was prescribed opioids; 30 tablets a day. The side effects were crippling. She felt permanently lethargic, woolly-headed, not present in her own life. Her breathing suffered, she kept forgetting things, including what tablets she had taken and eventually, her speech became blurred. Alicia takes a moment now to compose herself. She glances away to the side of the auditorium, covering her mouth with trembling fingers and apologises for the tears she is fighting. The recollection is clearly impacting her, raw and potent as it is. Listening to this intelligent woman, looking healthy and chic in a navy polka dot dress, it should be difficult to imagine her defeated and over-burdened with pain, but it isn’t. Her honesty paints a vivid picture and we are all affected.

Composed, she continues. In November 2018, Alicia tried cannabis. The first vape reduced her pain instantly. She stopped taking Lyrica, endured severe withdrawal symptoms, but persevered.  She’s speaking quickly now, her nerves getting the better of her again, or she’s rushing to wind things up, thinking we’ve heard enough of her story. Not the case. The packed auditorium is transfixed. She came off all 30 tablets. She tells us about her tenacious consultant and his failed attempts to secure her a prescription for medicinal cannabis. She tells us about the punitive expense of importing cannabis from abroad, not to mention the legal implication, but she was willing to risk a criminal record when faced with the alternative: a re-incarnation of the opioid- induced zombie she had become before she tried cannabis.

Throughout her long, painful and traumatic journey, Alicia has studied. First her degree, then a masters and now she is undertaking a PhD in Medicinal Cannabis Regulation, fully supported by the faculty of UL. But she is tired of the struggle and can’t afford to keep importing the medication that she says saved her life so she’s off. She, her husband and her parents are moving to Spain in November where she can access medical cannabis on prescription.

Adrianna Dempsey takes to the stage, middle aged, dressed in smart, black leisure wear and wedge-healed trainers. She has long blonde hair and a soft smile. She tells the audience that she is very nervous and to please bear with her. She recounts a car crash from 20 years ago that led to her undergoing a myriad of surgery. Her memory got so bad from the pain medications they thought she had Alzheimer’s. A brain scan proved she didn’t. She became a chronic insomniac and developed fibromyalgia. Then shyly, with modest pride, she mentions her son, Damian, the singer/songwriter, who bought some cannabis for her while they were abroad. She says it was the only thing that gave her relief. But out of concern for Damian’s reputation, she won’t let him source it anymore and regrettably, she too is considering leaving the country. It’s beginning to sound like an Irish solution to an Irish problem all over again.

We break for refreshments and a doctor shares a funny anecdote with me. When studying medicine in Ireland back in the 1970s, a fellow student and member of some African Royal family, I won’t say which one, used to come to college with a beautiful, hand-crafted leather briefcase. He would sit on a bench with three or four fellow students at either side, open the briefcase with an expensive-sounding click, and pass ready-made joints down along his left and down along his right. There they’d sit, giggling, pontificating, eventually succumbing to munchies. They all graduated and are practicing medicine now. He tells me the weed on the streets today is far more potent because the dealers are unscrupulous.  It’s grown intensively to produce stronger highs so smaller quantities can be sold for more money.

“So what about a plant you might grow in your attic?” I enquire. “Oh, work away,” he says.  “No, I don’t actually…” I began, but then I just smile and thank him for the advice.

Irish law changed in June this year, due in large part to pressure piled on by formidable Cork woman Vera Twomey, who also spoke at the symposium.  It means medicinal cannabis is now available on prescription from a practicing consultant only, but the law allows for just three medical conditions: multiple sclerosis, epilepsy and post-chemotherapy sickness. There have been calls to broaden the spectrum to include chronic pain. Dr David Finn, Professor of Pharmacology and Therapeutics at NUI Galway outlined detailed research that demonstrates exactly how and why cannabis is effective at treating neuropathic pain but to date, the HPRA seem satisfied that cannabis has no role to play in treating the condition, so people like Adrianna and Alicia are forced to leave the country to obtain the medicine of their choice.

Dr Garrett McGovern from the Priority Clinic in Dundrum is a regular media contributor. He has been beating this drum for a long time. He highlighted the growing number of patients presenting with chronic pain and the problems associated with treating it conventionally. “We give patients so many different medications at once, many of which are addictive and with very serious side effects. If lots of people are getting symptom-relief from cannabis, which they have to secure by breaking the law, then yes, the law needs to change,” he said. When asked in the Q&A session why exactly he thought doctors were so opposed to cannabis, Dr McGovern paused to consider. He sat back and crossed his legs, still pondering,  then he said slowly “I honestly don’t know. There are very few side effects associated with cannabis. Most doctors are ultra conservative, really square,” he concluded. The audience agreed.

Vera Twomey is a powerful orator, and her power does not come from being a rhetorical genius. In fact, her delivery and language is colloquial and unsophisticated. But she can connect with an audience which is why she was instrumental in the change to Irish law. She eventually secured medicinal cannabis for her daughter Ava who has Dravet Syndrome, a severe form of epilepsy. But her campaign was long, exhausting and torturous and included a six month re-location to The Hague. She recounts the first meeting with her Dutch consultant. The consultant asks why she cannot get cannabis, which has been used medicinally in The Netherlands since 2003, at home in Ireland. Vera assures her she has tried, very hard, but the Irish consultants recommended brain surgery for Ava before they would consider cannabis. At this point, Vera becomes animated, engaging her audience as she demonstrates with waving arms, how the consultant beckoned other medical staff over, making Vera repeat what she had just said. Vera imitates the consultant translating her words to the team, except Vera doesn’t speak Dutch so she improvises with inflections demonstrating the consultant’s utter disbelief: Bluh bluh bluh bluh bluh bluh? Bluh bluh? Bluh bluh!  We understand perfectly: Brain surgery on a little girl, before trying cannabis? Surely not!  I feel myself blush at the impression this must have left on the Dutch doctors: Irish consultants, working by candle-light, bleeding children with leeches.

People Before Profit TD Gino Kenny invites the panel of experts to take their seats for the final Q&A session. Vera and Gino are familiar with one another at this stage; it shows in their easy banter. As Vera tussles with him over the need for the microphone, which is producing a lot of feedback,  Gino shoots the audience a look that shows he’s resigned to let Vera conduct things whatever way she wants to. The auditorium is warm, as is the atmosphere. People speak openly, voicing opinions in friendly and measured tones.

The panel includes eminent consultant neurologist, and  honorary professor at Newcastle University, Dr Mike Barnes. We had grabbed a chilled Coke together at the interval. He is an exceptionally unassuming man, who exudes a quiet air of  wisdom. In another few years, when his beard is longer with more grey, he could reasonably play Santa Claus in a department store grotto. I asked him if he believed that big pharmaceutical companies were responsible for restricting medicinal cannabis. He agreed it is part of the problem but not the complete story. “The medical profession,” he said, “are obsessed with double-blind, placebo-controlled, clinical trials, and not so open to anecdotal evidence. Very often, the patient knows more about cannabis than the doctor does, and doctors don’t like that.”  Fair enough, but traditionally, it has been neigh on impossible to carry out any sort of trials on cannabis in Ireland due to its Schedule 1 Drug classification. One would have to grow the cannabis in the first place to ensure its provenance, and for that, one would need to obtain a special cannabis cultivation licence, other than those previously issued to farmers who grow industrial hemp with a THC content of below 0.2%.

When a member of the audience asks Dr Barnes which medical conditions prescription cannabis should be allowed to treat, Dr Barnes goes a step further by suggesting a de-medicalisation of cannabis altogether, as is currently the case in Canada and some US states.

“I believe a system of dispensaries, run by organic cannabis growers who are familiar with the plant and experts in its properties, is the way to go. It negates the need for unnecessarily, complicated legislation or big pharmaceutical involvement.”

So in effect, we legalise cannabis. This may seem radical, but ‘radical’ was the term used to describe the Citizens Assembly recommendations on abortion in 2017. However, the referendum result proved that we believe the right to choose trumps all other considerations, including social, political and religious. Even pro-life voters could not get away from the fact that abortion already existed, not here, but it existed nonetheless. No referendum result was going to make it disappear, and anyway, does disagreeing with something afford the right to prevent another person from doing it? As cannabis already exists, and prohibition is not going to make it disappear, logically, the same argument should apply. As Dr Barnes succinctly puts it: If you think cannabis might work for you, then it should be your choice to try it.