'I can't drive without cannabis': Tipperary campaigner on her fight for legal access

A Tipperary cannabis campaigner has opened up about her fight to become the first endometriosis patient to be granted a Ministerial License for the plant.

Aimee Brown from Roscrea, now aged in her 30s, has been experiencing endometriosis symptoms since the age of eight. 

She thought the symptoms started when she got her period at the age of 11, but after using the Freedom of Information Act to access her medical notes, she discovered that between ages eight and 11 she had been hospitalised three times for nausea, vomiting, pelvic pain, and other symptoms that she has now suffered with for most of her life. 

Despite the signs and symptoms, Aimee wasn't diagnosed with endometriosis until she was 21. 

"I was a hormonal guinea pig throughout my teens. Mirena coil, injections, chemical menopause, you name it, I was put through it between the age of 11 and 21," she said. 

All of these 'treatments' were given to Aimee without actually knowing what was wrong. 

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"At that stage, that was just presumptive diagnosis. I still wasn't even diagnosed. It was just a hormonal treatment to manage symptoms but unfortunately, all those years of that symptom management just allowed the disease to run ravage and deeply infiltrate all of my organs," she explained.

Aimee started using cannabis at age 15 but didn't realise the link between the plant and the mental and physical relief she felt from her symptoms until years later. 

Once she did realise the benefits it was having on her, she went on a "really, really long and hazardous" journey to get a Ministerial License which allows her to be identified as a cannabis patient. 

"I had to do a lot of public protesting and campaigning. It took a lot in terms of raising awareness," she said. 

The first step for Aimee was getting a new pain consultant who was based in Limerick. 

She explained to him about the Medical Cannabis Access Programme (MCAP), which has been available since 2018, and he agreed that if she tried his way first and it didn't work, he would put her forward for the programme.

"The fact that he even listened to me was the first time I was treated as a reliable witness to my own suffering. I appreciated him hearing me out," she said.

Aimee got the License when she was 30, after almost 10 years of suffering and risking a criminal conviction while self-medicating with cannabis. 

Before that, she had travelled abroad for surgery twice and the second time she went to Romania, where it was discovered that there was a 50-millimetre-deep infiltration of endometriosis in her diaphragm wall.

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The average infiltration of the disease is six to eight millimetres.

"If that had been left go any further, that would have made its way into my heart and arteries, but to get it sorted, I had to go to a different country," Aimee said. 

Now, she has a monthly prescription for cannabis, but again, her treatment options are better abroad.

The strain of cannabis that she is prescribed does get rid of her nausea but it exacerbates her nerve pain, meaning she is swapping one symptom for the worsening of another. 

In Northern Ireland and the UK, cannabis patients have access to menus with different strains that they can try to see which one is best suited to their condition.

"We have to trial and error every other medication that we're prescribed so I don't understand how we're expected to have one strain for all when it comes to cannabis," Aimee said.

If you are a cannabis patient in the North, you cannot travel to the Republic of Ireland with your medicine and vice versa. 

"My friends, my family, and patients up there have access to these private clinics who provide an entire menu. I'm not being awarded or afforded the same human rights as my counterparts living a couple of miles up the road," Aimee said.

In Lanzarote, cannabis is decriminalised if you are a member of a cannabis social club.

Aimee was there in recent weeks and was able to pick and choose different strains that helped with the symptoms she experiences. 

"There were certain ones that helped with nerve pain. Certain ones helped with inflammation. There was others that helped with anxiety and I suppose depression, because I have a lot of mental health issues due to the chronic pain and other circumstances," she explained.

Despite the strain she is prescribed not being fully effective, Aimee explained that she has to keep it up to prevent her being criminalised and to keep her driving license.

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"I can't drive unless I have cannabis. The sciatic nerve kicks out my legs so bad that if I don't have cannabis, I'm physically not safe to drive. It'd be like someone getting up with Vertigo and not taking their Vertigo tablet and getting in and driving a car," she said. 

Aimee pays €250 a month for her prescription, but was only charged €1.50 per month when she was being prescribed opioids. 

She says the financial pressure is a lot, especially on top of having a job and being a carer for both of her parents.

"The level of responsibilities that I have, I would not be able to do any of without cannabis. It costs me €250 a month to maintain the label of a patient so that I'm safe, but the actual physical product is no good to me," Aimee explained. 

She added that the onus is on patients to speak up and say what works for them and what doesn't, and even when they do, generally patients have to go with what the doctor says regardless. 

Others are too afraid to ask for access to cannabis as they were worried about the stigma and backlash. 

"I've got women in Dublin, Sligo, Mayo; all of them want to go to Limerick because that's the only doctor that seems to be taking on board their actual lived experience," Aimee said.

She added that there are so many people messaging her on Instagram daily who want to know how to access cannabis legally. 

She said she feels the responsibility of those patients on her shoulders as so many people contact her asking if she can advocate on their behalf.

"I have so many patients in my DMs on Instagram who want to access cannabis legally, who are too scared to talk to their GP or their consultant, or people even in their family because they're worried about the stigma and the potentially losing their job or potentially coming to the attention of children services," Aimee said. 

Those people suffer with a range of different conditions, such as epilepsy, muscular dystrophy, and multiple sclerosis and they want to know how they can start the fight. 

"Because of being the first one to speak out, it feels like that's the community that are looking to me to represent them. At the moment, I'm barely keeping my head above water because there's just so many of them," Aimee explained. 

She added that the "sad reality" is that she cannot fight the fight for these people.

"They have to build up the courage themselves. It's not always easy, especially if you've experienced medical trauma to the degree that many of the endometriosis communities have. It can be very difficult to find the courage and the confidence to be able to articulate what you want and what you need," she said. 

Aimee believes one step in making access to medicinal cannabis easier for patients could be decriminalisation, as that would be "one less barrier" for people to worry about.

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At the moment, there are a quarter of a million women who have been diagnosed with endometriosis and many of them have to access cannabis illegally, meaning they are risking a criminal conviction. 

An even better suggestion would be the social club model, similar to the one in Lanzarote, Aimee says. 

"If it was decriminalised, it would absolutely take one of the barriers off of endometriosis patients but that's not enough because you're still dependent on the black market so you're looking at contaminated products and putting yourself in maybe unfavourable social situations that you don't want to be associated with. For me, the social club model would be a huge, huge step forward for patients because at the moment there's so many that are self-medicating," she said. 

"What bothers me is the label between me and most of my friends as that I've been granted the label as a patient. My friends are patients too, they just haven't been granted the privilege of that label yet and that really bothers me," she added. 

Aimee says some of her friends are on the same journey that she went on to get the Ministerial License, but others don't have the time or energy. 

The way the current system works, you have to have exhausted all of your other options before being considered for a cannabis prescription. 

"To me, the bottom line should be the patient is sick and they're saying that something helps them. It should be available to them to try as a first line of treatment. At the moment, it's a last resort, putting us through untold levels of trauma and side effects," Aimee said. 

She is advocating for the rules of the Medical Cannabis Access Programme (MCAP) be broadened as it currently only includes three conditions, which are severe, refractory epilepsy, nausea and vomiting associated with chemotherapy, or spasticity associated with multiple sclerosis.

If you have one of those three conditions, you can be reimbursed for your cannabis prescription. 

The other route to accessing cannabis is through the Ministerial License that Aimee has, but that means the financial burden lies with the patient.

"You get no help or support, regardless if you've got a medical card or the drugs payment scheme," she explained.

As part of her advocacy for change, Aimee has met with the Minister for Health and told her she wants a seat at the table when the MCAP review takes place.

She met with Jennifer Carroll MacNeill at the start of September when she was going into the Dáil to talk about cannabis access for patients of all kinds, and not just endometriosis.

However, the Minister said that was the first she had heard about it. 

"I said, 'well, I know that's a lie, because I know I have a fellow advocate who's been emailing you every single week.' A recurring email goes from her email account asking about an update on the MCAP review, which we were promised two years ago," Aimee said.

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The promise of a review was made in quarter four of 2023 and Aimee says there has been no progress since. 

"I told her my goal was to get a seat at the table as a patient advocate because you can't be making decisions without the voice of the patient being central to it. As far as I'm concerned, that's across the board, not just for cannabis. It's the patients' voice, we're the ones that it's impacting. We need to be at the heart of any decisions that are being made," she said. 

Minister Carroll MacNeill has since guaranteed Aimee a spot at that table when the review is to take place, which Aimee says is hugely important. 

She hopes that change will come following the review and that a more radical approach will be adopted. 

At the moment, many doctors and consultants cannot prescribe cannabis because of hospital policies. 

"If doctors are seen to be supporting cannabis, they're likely going to lose funding for certain research and whatever else that big pharma are providing," Aimee said.

She added that she believes large pharmaceutical companies are a large part of the issue as they would lose out on a lot of money and customers.

"They would lose out on so much if patients had wider access to cannabis. They wouldn't need the opioids. They wouldn't need the anti-inflammatories. They wouldn't need the other medications to subside the side effects that the codeine causes. Like I can get Tylex on prescription but then I have to pay for the tablets that ease the constipation from the Tylex," Aimee explained.

Stigma is another reason she feels getting access to cannabis legally is such an issue, particularly stigma among doctors. 

Aimee is a co-founder of Grass Roots Social Club, which is a group of campaigners, lobbyists, and patients who have come together to form a company with hopes to destigmatise cannabis use. 

"The idea is it's a safe space with inclusive morals and values that patients can come to us for advice. We're going to be holding small social events that people can come together and consume their medication without stigma," she said. 

The club is run by volunteers and is a not-for-profit organisation which sees all money made put back into the club so more events can be held. 

"I suppose it's rooted in activism, in advocacy, and in trying to build a community where people feel empowered to speak on their behalf rather than having to look to me. There's so many in the cannabis shadows who are just so afraid to speak out about their usage because of the fear in society. We want to eradicate that stigma and be able to bring people together and empower them," Aimee continued. 

One event the Grass Roots Social Club held was a festival during the summer that had live music and camping. 

It went so well that the plan is to run the event for two days next year.

"To hear people saying 'how are we supposed to go back to the real world now where we're criminals?' you know, it's really sad. We're patients, we're not criminals," Aimee said. 

Part of the festival this year saw a growers competition in which 11 people entered.

"It was incredible. But again, all of those people are risking their freedom in order to maintain making that medicine themselves," Aimee said.

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She added that if cannabis was removed from the Misuse of Drugs Act, patients would be getting these plants and oils for free.

She also said there are many people in the cannabis community who are willing to grow and provide the plant for free as they know the benefits it can have for people. 

Despite the progress and positivity felt after the Grass Roots Social Club event, Aimee knows there is still a lot of work to do. 

She added that there has been a number of times when she thought change was coming but it didn't. 

The Citizen's Assembly on Drug Use and the Justice Committee making recommendations to government for law reform are two instances.

"When you're in that space and you're fighting that fight every single day, it's really tiresome and exhausting. When you're on the front lines dealing with people who can't go for a job because they have a criminal conviction for €20 worth of cannabis, it just makes no sense," she said.

Between February 2020 and February 2024, over 17,000 people got criminal convictions for personal possession of cannabis. 

This is a figure Aimee cannot comprehend, especially knowing those people will be prevented from travelling or gaining "meaningful employment."

She says that as much as her becoming the first endometriosis patient to get a Ministerial License for cannabis was an achievement, it's not something she feels she can celebrate. 

"I can't celebrate that when I know thousands of my friends are at risk of criminalisation. I'm not free until they're free and that is honestly the way I feel," Aimee concluded.