Cannabis report: Chronically ill Cork woman 'exiled' to Spain so she can get her medication
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Now that the heatwaves in Spain have passed, the planeloads of Irish people who have dodged flight disruptions are basking in the glory of sun, sea, and sand.
They may well even be envious of one Cork woman who moved there in 2019 and has remained there since.
But Cork City native Alicia Maher and her husband Gerry would happily swap the warm weather and Mediterranean life for Ireland’s rain and the comforts of home.
The couple moved to Alicante to help Alicia access cannabis for chronic pain, because, although she has been prescribed it in Ireland, she cannot afford to pay for it as it is not covered by her medical card.
The monthly cost, more than €1,000, is more than what she would receive on the invalidity pension.
Frustrated and angry, Alicia says: “I don’t think anyone should have to move abroad to access a medication that is working for them. It should be simple.
“There is the Medical Cannabis Access Programme but I don’t qualify for that," she adds. "My doctor prescribes me cannabis under the ministerial licence.”
This article is part of a series in the 'Irish Examiner' — in print and online — outlining arguments for and against regulating cannabis as a medicine. Click here to read the entire series.
If chronic pain was covered through the Medical Cannabis Access Programme, the cost would be reimbursed through the medical card scheme.
“It is absolutely shocking that families are broken up over this,” Alicia says. Her mother and father remain in Cork, while other family members she misses seeing daily include her siblings and her nephews and nieces.
“There is a big difference in my nephews and nieces when I don’t see them for two and a half years. They were different people when I saw them when I came over recently.”
She says it is difficult for her parents too, although they have travelled to see her and Gerry a number of times.
Alicia has had ongoing pain over several years, beginning after her tonsils were removed around two decades ago.
After both sides of her throat haemorrhaged following the surgery, she underwent further surgeries and was in hospital on antibiotics for a number of months.
Her bowels then started to bleed and she remained in hospital while being treated for ulcerative colitis and Crohn’s disease.
But one night while in hospital, her large intestine burst and it was removed in an emergency surgery. She had a colostomy bag as a result which was to be reversed after six years, in 2006. However, that surgery had to be postponed after pre-cancerous cells were found in her rectum which had to be removed.
Subsequently, she suffered further pain in her coccyx area and believed that the pain was bone-related.
In 2012, she was referred to a pain specialist who discovered the pain was resulting from a broken coccyx bone. She says: “It is completely shattered, even now.”
She was on a series of medication, including Panadol, Tramadol, Palexia and four-monthly injections into the coccyx.
In 2015, she got sciatica, leading to an increase in her medication to include Lyrica and amitriptyline, resulting in her being on 30 tablets a day over the next three years.
I would get up and take ten tablets and fall straight back to sleep, and take the next ten tablets and back to sleep. I was rarely awake.”
Alicia began to get worried because she felt the medication was impacting on her eating, and on her breathing. Her husband’s friend in the US was taking cannabis for pain and suggested it to her. He posted her a vape in 2018 and she says it was the first time she had ever taken it — at the age of 34.
She recalls being “terrified” of taking it because she did not know what effect, if any, it would have on her.
She says: “My doctor didn’t know and I was still taking 30 tablets a day so it was a risk but it was a last resort. There was no point living my life on the couch.”
She remembers the almost immediate change after taking the cannabis for the first time.
"I could not believe the pain was going away. That night, I didn’t bother taking my night-time amitriptyline or Lyrica and I went off to sleep."
The next morning, then, I woke up with the same pain again and I tried the vape again, and again it got rid of the pain.” She describes it as “gentle” easing of the pain, without feeling “weird”.
She managed to wean herself off after her medication, while self-medicating with the cannabis vapes which she was ordering from the US.
She went to her GP after reducing to just half the medication she had been prescribed and her GP then applied through the ministerial licence route to seek access to cannabis treatment for her.
But she was unable to get clearance because her pain specialist was no longer working with the HSE and she needed to get approval from a pain specialist.
In the meantime, it became more difficult to get the cannabis vapes from the US and she turned to getting cannabis “on the streets”.
“Luckily, most of the time, it worked as well as the vaping but then there were sometimes that I got it, I knew that I shouldn’t smoke it because it looked terrible,” she says.
Her husband raised concerns about the safety of buying it from dealers and the couple decided to move to Spain, where cannabis clubs were then in operation. After paying a fee for membership, a member of a cannabis club then could buy and smoke cannabis of a certain standard on the premises.
The couple moved to Alicante in 2019 and have been living there since.
When the pandemic arrived however, the cannabis clubs closed down but Alicia then managed to get access to cannabis through a wellness clinic in Madrid which filled her prescription.
The couple have both been studying since, with Alicia a PhD candidate in law at the University of Limerick — on the regulation of medicinal cannabis in Ireland — and Gerry undertaking a PhD in history.
In the meantime, efforts are continuing for Alicia to be able to access legal cannabis treatment in Ireland, and she managed to secure a new pain specialist in January 2020.
Instead, the cannabis would cost her over €1,000 a month, which she could not afford on her invalidity pension.
She says that in Spain, it costs a quarter of that — meaning it was impossible for her to return home.
The cost of a monthly dose of cannabis for her in Ireland was more than what she would receive in her invalidity pension.
More than two years after their temporary move, Alicia and Gerry remain in Alicante, hoping that eventually, the drug will be covered for her through the medical card scheme.
Although it is approved for medical card holders who are part of the Medical Cannabis Access Programme, the conditions included in that programme are limited to just three — spasticity associated with multiple sclerosis; intractable nausea and vomiting associated with chemotherapy, and severe, refractory (treatment-resistant) epilepsy.
She spoke at a conference in Dublin organised by Patients for Safe Access, of which she is a member.
The group set out a policy document which demands that the range of conditions under the Medical Cannabis Access Programme be expanded.
The group also seeks an increase in the range of cannabis products available, and to reduce the cost of medical cannabis. And the group is calling for legislation to licence, regulate, and tax the “legal cannabis marketplace”.
Also speaking at the Patients for Safe Access conference was Tipperary woman Aimee Brown.
She too has been through a long history of pain. Hospitalised at the age of eight, she did not realise that the pain that was afflicting her then would stay with her most of her life.
Neither did she know back then that she would one day end up breaking the law to get the medication which she says helps her — cannabis.
Aimee, now 30 years old, suffers chronic pain throughout her body as a result of endometriosis and adenomyosis. Her pain worsened in her early 20s — she likens it to being on a rollercoaster for years.
She was being prescribed painkillers including anti-inflammatories.
After three surgeries in Ireland, Aimee had to give up her job in Dublin at the age of 26 because of her condition.
She travelled to Romania in October 2019 for further surgery in a specialist clinic for endometriosis and endometrial cancer, which she says has changed her life.
At that point, she was “riddled” with the disease, with its presence even on her diaphragm. She says she was bedbound for 18 months prior to the surgery.
She remembers: “I couldn’t do anything. I couldn’t make plans. I was in agony. I could not get out of bed.” Since then, she has returned to college and has completed her first year in a degree course in social care.
Aimee believes the surgery, combined with cannabis use, has helped her turn her life around.
She has been using cannabis for 14 years and says she is forced to get it on the black market. Although she uses it now for medical purposes, she was firstly a recreational user.
But when she found that her symptoms were eased when she used the drug, she began to use it regularly.
“I use it for mobility, pain relief, reduced anxiety, depression, energy, and for my appetite, which is very bad because I have a lot of digestive issues,” she says.
“I was 16 years old and in severe pain when I started using it. But I didn’t realise I was taking it medicinally until I was probably in my mid-20s. I just thought that everybody felt better when they took cannabis. I didn’t realise how specific it was to me.”
She adds: “I was kind of treating myself unknown to myself. In my mid-20s, I started really researching and digging into it all.”
Being criminalised for using something which she believes helps her condition makes no sense to her.
“It is a victimless crime,” Aimee says.
She was detected once for drug driving but says she never received a notice to appear in court. However, it hung over her for a long time.
“I have seven different consultants across three different counties. My car is the only way I can attend those appointments. I look after my elderly parents who have hospital appointments too so the fear of losing my driving licence is a huge anxiety.”
She says that because she does not have a licence to use cannabis for her condition, she could be “dragged through the courts like a criminal” if she’s caught having cannabis in her system while driving.
“I know many people have been caught and whose lives have been destroyed.” She knows of one person who lost out on a major career opportunity because of it, she says.
“I am already struggling, I am barely keeping my head above water without having to justify and explain my actions to everybody else.”
Asked how she feels about the focus of some medics on the impact of cannabis use on mental health, Aimee replies: “The only mental health effects I am personally having are because of lack of access.
"Because of having to buy on the black market, I am fearful of being arrested. That’s what is making me anxious.
“I have been using it personally for 14 years and I can only speak to my own experience and I can tell you that cannabis has brought me back from the brink of suicide many times because of the pain that I was in.”
Aimee is involved with Tidy Buds, a community of cannabis consumers who work on tidying their local areas, and openly use cannabis while doing so.
“It is like an act of civil disobedience that is benefitting the community," she says. "We are trying to break the ‘stoners’ stigma. We are not a menace to society — we actually have quite a lot to offer to society.”
She spends at least €100 a week on cannabis flower and also takes edibles, which she says will cost her anything from €30 to €120 when she needs to take them if she is in a particularly bad flare.
Aimee says her parents were not always in favour of her decision to use cannabis but are supportive of it now and help her meet the cost if it is particularly high.
“It took them a lot of time to get their heads around the stigma because of the conditioning they have been exposed to," Aimee says.
"But now thankfully, they completely support me, they understand. They see that it doesn’t do anything to disrupt my intelligence or my ability to articulate myself or to partake in the community. If anything, it makes me a better member of society.”
She relies on a number of sources who usually grow the drug, so that she knows she is not contributing to criminal enterprises. She also knows that the product is grown properly and she is glad she knows the origin of the product.
But she says that there are occasions when she does have to purchase the drug from less reliable sources, which she says makes her feel dirty.
A spokeswoman for the Department of Health said doctors can use the ministerial licencing route to prescribe medical cannabis for their patients.
“In line with the chief medical officer’s advice, the granting of a licence for cannabis for medical purposes must be premised on an appropriate application being submitted to the Department of Health, which is endorsed by a consultant who is responsible for the management of the patient and who is prepared to monitor the effects of the treatment over time,” she said.
“The HSE will reimburse eligible persons who access a cannabis product under the Ministerial licencing route if prescribed for one of the three medical indications included in the MCAP.”
However, these do not include Aimee or Alicia.
The HSE has approved the reimbursement of cannabidiol via its High Tech Drug Arrangements for certain seizure types also.
The spokeswoman said that approved prescribers will be required to provide confirmation that cannabidiol (Epidyolex) 100mg/ml oral solution is being prescribed in accordance with the licensed indications and in line with the terms of reimbursement approval given by the HSE.