‘I moved to Spain to get access to medical cannabis’

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.