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Mum’s urgent plea for daughter’s medical cannabis

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Mum and prominent campaigner Vera Twomey has pleaded with the Irish government to continue access to her daughter’s medical cannabis.

Vera whose daughter Ava Barry, 11, has a severe form of epilepsy known as Dravet syndrome has called on Ireland’s Prime Minister Micheál Martin and Health Minister Stephen Donnelly, to help secure the delivery of her medical cannabis prescription.

Before the outbreak of Covid-19, Vera and her husband Paul were travelling to The Netherlands every 12 weeks to buy medication and bring it back to Ireland for their daughter, who has been taking it to control her seizures for the last four years.

Due to the coronavirus lockdown and travel restrictions the Health Service Executive (HSE) have arranged for the importation and delivery of Ava’s medication, along with 40 other patients who are prescribed under individual licences.

Now Vera has revealed that the HSE has confirmed in writing that this arrangement will stop once the restrictions are lifted.

She fears that being forced to travel overseas every few months would put her at risk of contracting the virus which could be fatal for her daughter, whose immune system is compromised due to her condition.

“Ava has taken medicinal cannabis to control her seizures for the last four years. She has responded very well, and considering the serious outcome for Dravet Syndrome patients, it is clear that medical cannabis has saved her life,” said Vera, who once walked from her home in Cork to Leinster House in Dublin in protest to ask former health minister Simon Harris for help in her fight to gain access to medical cannabis.

“The HSE have told us, in writing, that the arrangement will cease once covid restrictions are lifted.

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“My daughter has a compromised immune system and there exists a real danger that either Paul or I would contract covid-19 while travelling and bring it back to our daughter. It could cost Ava her life.”

Vera says she has been attempting to contact Stephen Donnelley since he became Minister for Health in June 2020, but only this week received a response from his private secretary – with no offer of a date or time.

“We have little time or interest in being fobbed off as we have been by previous ministers,” she continued.

“Travelling to The Netherlands in Covid times is unacceptably dangerous for our daughter’s wellbeing and the HSE have set a precedent by arranging importation and delivery of the medication. This arrangement must continue.”

Despite the legalisation of medicinal cannabis under The Medical Cannabis Access Programme in Ireland last year, only two products have been approved for use in the scheme, with many patients forced to travel to access their medicine.

“We need a permanent solution that works and that does not cost us, or the state, more than it should, said Vera.

“Right now, delivery is imperative and it must continue no matter what level of lockdown we’re under.”

She added: “Our priority is for our family members and our children who need security of access. Micheál Martin and Stephen Donnelly need to implement change as a matter of urgency.”

Cannabis Health has contacted the Department for Health and Stephen Donnelly’s office for comment.

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Case Studies

CBD brand created by a Welsh athlete releases report on potential health benefits of CBD

The Healthcare Technology Centre (HTC) partners with Welsh brand Hemp Heroes to discover the potential health benefits of CBD products. 

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Welsh: A cbd oil bottle containing yellow oil has a dropper being placed into it

The Healthcare Technology Centre (HTC) partners with Welsh brand Hemp Heros to discover the potential health benefits of CBD products.

The Welsh HTC led by Swansea University Medical School collaborated with Swansea and Ireland based company, Hemp Heros. Hemp Heros was co-founded by  David Hartigan and martial arts athlete John Philips.

The report was the result of several months of research into the benefits of CBD- based products on a range of conditions. These included epilepsy, side effects of chemotherapy, multiple sclerosis (MS), stress and anxiety.

Speaking with Cannabis Health News, Hemp Heros co-founder David Hartigan explains how an interest in martial arts helped him to meet John and start the company.

Athletes and CBD

David said: “It’s a bit of an interesting story how myself and John met. My background is in business consultancy and I’ve always been into martial arts since I was a kid. John asked my brother who is a musician to do some walkout music for UFC. As John was only newly signed at that time, I wondered if he had anyone to help him with marketing and sponsors. I became John’s manager.”

He added: “I started looking at CBD companies because athletes were starting to use it. I thought there was a huge opportunity to get John sponsored by a company. We did get a few samples from different companies but the quality was hit or miss. Even the instructions when you were trying to read it could be confusing.”

John’s first experience with CBD was not actually on himself but his dog, Alfie. When he became ill, John began treating him with CBD after realising that Tramadol was not working. The vet had exhausted all options for treatment but CBD helped him to recover.

David said: “I have an uncle who is a powerlifter and he has a couple of Irish records. He has a number of injuries he started taking CBD for pain and inflammation. At one stage, he couldn’t even change the gear stick in his car but he has much better mobility and pain management now. So between my story, John’s and the lack of transparency in the industry in the market, we decided to try an investigation.”

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David spent six to eight months researching the whole industry speaking to anyone he could about hemp or CBD. He also joined the board for the Irish Hemp Cooperative. They spent months researching everything before finding a supplier to get them started. The brand has now grown from three or four products to over twenty including a successful pet range.

Hemp heros: A man wearing a black t-shirt stands next to a dog

Welsh university study

The brand partnered with Swansea University and are part of the accelerator programme there. They had planned to participate in studies on CBD but unfortunately, COVID hit just as they began to start the studies. The Welsh Accelerate programme aims to create lasting economic value by helping innovators in Wales to translate their ideas into solutions, enabling them to be adopted in health and care.

David explained: “Dr Daniel Rees, who is one of the researchers at Swansea University reached out to us. He had seen our products around the place and wanted to know if we would be interested to do some studies in the life sciences department.”

“The whole idea of the Accelerator programme is to identify potential services or products that can have a positive impact on people’s lives. It improves the lives of the end-user. Dan highlighted that very little research was done on CBD in this context. We are passionate about transparency so we really wanted to push the research. However just as we had hoped to start lab tests, COVID hit.”

The COVID situation didn’t force a complete shutdown but changed the direction of the study for the researchers. As the colleges were closed, there were no ways of getting anyone into a lab for testing so David and the team decided to go down the road of research producing a report on the effectiveness of CBD. The initial study paves the way for future research activities around four key pillars: pain, sleep, anxiety, and recovery.

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Lab study to research reports

“What we did was change gears so instead of a lab-based study, we are going to do a more research-based one. We researched the case studies for CBD and hemp-based products along with the history behind them. We looked at different cannabinoids like CBD or CBDA, different terpenes and then unique extraction methods. We went into deep dives on what studies were there for cancer, sleep, inflammation, pain and took them as different pillars. This is what our report contains.”

He added: “We wanted to show some form of evidence for how CBD could possibly work for Parkinson’s by looking at the findings, how the studies are performed? What is the wider picture for sleep or inflammation? This could give us a foundation to build on.”

The next step

Hemp Heros started to submit an application called Smart Partnership to the University for the management side. This would allow them to secure funding to get an associate who would work between the Welsh brand and the university.

“It gives the company the tools and techniques to use these findings and apply them so you can continue your work. We have all of this anecdotal evidence on why people use our products but then the smart partnership would allow us to do a deeper dive and validate what our understandings are.”

He explained: “We have set out three pillars essentially. Sleep is one that we want to investigate and they have a sleep lab there. We want to start out with something quite simple like 20 participants with sleep issues and give them a protocol. They log everything then they take a set dose of our product for a week to see what the impact is. The next step would be to go into the sleep lab to actually monitor what someone’s sleep pattern is, how quickly it works and what the effects are.”

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Welsh: A man walking a dog on a lead across a beach

As well as the studies and research they have conducted, the brand is still planning to work with different athletes.

“Should athletes be using prescription pain medications to help with their pain to get through the day? They could have a more natural alternative with no side effects. Your body is already built for cannabinoids, not really for painkillers. That’s why a lot of people have issues with their kidneys when they are on painkillers for so long because they are trying to process everything.”

David is also involved in the advocacy side. He believes that Ireland needs to match the European level to make sure it isn’t left behind. He sits on the Irish Hemp Cooperative Board who are trying to change the laws.

“There are a couple of TDS (Ministers) who said that they would be interested in the sports angle. We aren’t looking for full-blown cannabis legal for everyone but we actually want to just look at hemp and the production because you can get a license but then technically what you grow is illegal. There is a massive gap in the law where the two laws don’t match and we don’t match at the European level. We need to make sure we are on par with our international counterparts.”

Read more: Pain, anxiety and sleep are the most common reasons people use CBD

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Emigration: Access is more than just medical access, it’s also about business

As Ireland continues to enforce prohibition, we meet Aoife McConnell who has moved her yoga business to Spain

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Access: A red Irish passport on top of a blue covid mask with a stop watch on top to highlight emigration

In a new series, Cannabis Health News talks to people who have experienced emigration in search of safe, legal cannabis access.

Read last week’s story here

Previous stories have focused on the difficulty of packing your entire life into boxes and emigrating with your family to a new country for access. But there is more to Irish prohibition than patients and access, it’s the loss of local businesses moving abroad.

In our fourth instalment, we speak to yoga expert, Aoife McConnell about moving her life and yoga business, Puff Puff Pose to Spain.

Aoife left Ireland during the summer of 2021 so has only recently arrived in Granada. She packed her entire life into boxes to get better access to cannabis and also, set up a yoga studio with a difference. She runs the popular, Puff Puff Pose, cannabis yoga studio which encourages practitioners to combine relaxing yoga with cannabis. The studio went online during the pandemic but she hopes to be able to establish a physical space now that she has left Ireland.

Safe, legal access abroad

Like most people in Ireland, her use started as recreational when she shared cannabis with friends. While she acknowledges the recreational side, she says she gets all the benefits of cannabis.

Prohibition in Ireland, and all over the world means that most people when they consume cannabis, often they have no idea what they are actually being given. Unlike legal states in America where someone can select what they need and know the THC or CBD content of a strain. Once Aoife became involved in the community, she realised how prohibition also stifles education about the plant.

Her use is mainly recreational however, while in Ireland she was forced to run her cannabis yoga business online or outdoors as it was illegal.

“In the last two or three years, I’ve become a lot more involved in the community of cannabis. Before then, I had no idea that were even strains of cannabis like Indica or Sativa. You were given what you were given. There is no source of understanding because there is no education around the whole thing. It could have been anything in a bag as we wouldn’t know the difference.”

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She added: “When you realise they actually have completely different profiles or effects then that matters for someone who needs the plant for medicinal purposes. It matters how it’s grown, taken care of or what the product actually is. I think it was just teenage ignorance but I didn’t even think of the fact there was so much to it. You just take what you are given and like it.”

Access: A woman with dark hair laughs against a dark background

Finding a space

Prohibition meant her classes were unable to find a space despite their emphasis on wellness and relaxation. Aoife began to consider the longevity of her business especially as COVID rules relaxing meant people were starting to look for offline classes again. She realised it was time to leave Ireland.

“I’ve been doing my classes mostly online or outdoors because it’s unregulated or illegal. It’s hard to get into a space to facilitate those classes. I wondered where I could go in Europe that could facilitate those classes. The Netherlands are starting to pull back their laws a bit and get more strict, especially after COVID so you never know how they are going to react. Spain is moving in the opposite direction.”

The global cannabis industry is expected to reach $90.4 by 2026 thanks to the growing acceptance of cannabis consumption along with the medical side. This is everything from edibles to dispensaries to products. Ireland currently allows CBD and medical cannabis but the recreational side is still illegal. The current systems in place for medical cannabis are not functional with the MCAP program yet to even start despite being introduced in 2019.

It has been highlighted that the tax and profits raised by a legal recreational system could contribute to some of the financial problems experienced by the country. Legal systems in countries such as Atlanta Georgia, California and Massachusetts have proven to be successful. Sales in Massachusetts recently topped $2 billion which is almost double what the state reported in November 2020. Cannabis was legalised for adult use in late 2018.

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Access to the Spanish model

While Spain has legalised the growth of up to two plants in your own home, there are still issues with the system. There have been reports of cannabis clubs, where it is legal to consume cannabis, being potentially closed. But for the meantime, a patient must sign to say they are addicted to cannabis and a resident before being allowed entry to one of the clubs.

“There are a lot of regulations around the clubs. You have to sign an affidavit to say you are addicted to cannabis and seeking out the club to facilitate your addiction. You have to say the club is not enticing you or advertising in any way. Most of them look like a door and you wouldn’t even know apart from the smell.”

Once you are inside, there is a loophole that allows this club to operate as cannabis is a ‘hobby.’ The illegal part is the buying and selling of the cannabis. I’m not sure where the government thinks they are getting this cannabis from. So I started to think that Spain was where I wanted to be.”

Access - a cbd topical on a wooden surface with other herbs around in glass jars

Deciding where to go in Spain was easy. Aoife had a friend based in Granada in the south so she chose to go there. She visited during the summer and fell in love with the architecture, history and feel of the city. She felt it was the perfect place to move the business. Aoife also teaches English online so her day job was perfectly suited to moving abroad.

“I quit my job and went on a tour of Europe. I’m still settling in here and learning the siesta way of life. But so far so good. There are a lot of experts here and everyone understands where I am coming from so they are very helpful.

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Aoife highlights how the leap into the unknown is often the hardest part of emigration. She feels she has never been this self-sufficient. Her day starts with tutoring online to pay bills but she will be opening the yoga business soon. In an unusual move, Aoife’s previous experience was as an airline hostess.

“It’s exciting to be stepping out and owning my own business. I’m still terrified about it but also really excited. I used to work for an international airline, Emirates when I lived in Dubai. I travelled everywhere. I was always looking for a studio or thinking about building my own.”

“I struggled to make friends in yoga class especially when moving to a new city. In my classes, at the beginning, we always consume together then chat. I’ll always bring orange juice, kombucha and biscuits. We sit around for as long as people want. It’s a real community-building atmosphere.”

Time to leave

Aoife is proud to be Irish but explains the problems with the country mean she is not thinking about staying.

“I love the fact I’m Irish and that part of my personality. I would love for my kids to have that much Irish in them. I couldn’t afford to live there as we are being priced out of the country. I couldn’t afford the type of lifestyle I would like to have. It’s ridiculous. The fact that we didn’t have a green passport for so long. We’re the only country in the EU who weren’t ready when that was rolled out speaks volumes.”

Read our previous stories on emigration here: “I would tell people if they are thinking about it, to go as you’ll get better access.”

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Emigration: “I tried cannabis again and I noticed that I was in less pain when I took it.”

In a new series, we speak to Irish cannabis patients about their decision to emigrate in search of easier, safer cannabis access.

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Emigration: A stack of suitcases against a window revealing a sunset and a plane

In a new series, Cannabis Health News talks to people who have experienced emigration in search of safe, legal cannabis access.

Our previous stories have focused on the difficulty of packing your entire life into boxes and emigrating with your family to a new country for access. However, there is another side to emigration: the potential for return.

What happens once you are a medical cannabis patient in another country and need to travel home?

The returning Irish from emigration in the past few years has hit record numbers. As people settle into life away from home, it gets harder to return. Travel options have never been easier with several flights to and from Ireland daily from all over the country, ferry options and failing that, zoom calls are a vast improvement on Skype.

COVID lockdowns meant that it’s been a difficult year for travel. Families who have experienced emigration may not have seen in their families since the beginning of the crisis. Now thanks to vaccines, travel is starting to become a possibility again.

This leaves medical cannabis patients in a confusing situation. What do you do if you have a prescription in one country yet need to go to another?

Joe’s story

This is the situation *Joe is in. This is not his real name but he has asked to remain anonymous due to the persisting negative attitudes towards cannabis which he is prescribed for debilitating arthritis.

“I have since the age of 14 suffered from debilitating rheumatoid arthritis. I also suffer from sciatica. I played rugby six days a week for my school, worked on the family farm and lived a full and normal life. My body then changed and while initially my shoulders were affected but then my knees. It felt like someone was trying to tear my arms from their sockets and that I had broken glass in my knees. That was 36 years ago.”

Arthritis is a common condition that causes pain and inflammation in a person’s joints. Osteoarthritis and rheumatoid arthritis are the two most common forms of the condition. It can start when a person is between 40 and 50 years old although it also affects children and teenagers.

In rheumatoid arthritis, the body’s immune system targets affected joints causing pain and swelling. The outer covering of the joint is the first place to be affected before it spreads across the joint leading to further swelling and a change in shape. This may cause the bone and cartilage to break down. People with rheumatoid arthritis may also develop problems with other tissues and organs.

The Irish Children’s Arthritis Network (iCAN) estimates there are over one thousand children and teenagers currently diagnosed with juvenile arthritis.

Emigration return

Emigration in Ireland soared in the 1980s as a result of a harsh recession and lack of jobs. It is estimated that during the ten years of the 1980s, 206,000 more people left Ireland.  Like a lot of Irish teenagers unable to find work and looking to leave home, Joe decided to leave Ireland for the UK. While working on a building site, he encountered other workers using cannabis.

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“Although I had my condition to contend with it, my symptoms were at their worst in autumn and winter and I went to the UK in the summer to work on building sites (I had no idea my short visit would last 33 years and counting.”

“I was brought up in Ireland with typical conservative social values. Many fellow workers on site were smoking cannabis but I had no interest and indeed felt it was both inherently morally wrong as well as being illegal.”

“For months my fellow workers would say to try some. I relented when we were out together one night as I had a few drinks so my guard was down. I smoked some cannabis. I was violently ill. I did not know that smoking cannabis with drink would have such an immediate and obvious effect.”

Emigration: A red Irish passport sitting on a black bag

Emigration, cannabis and pain

Joe began to feel more pain as winter began and his joints reacted to the cold. Despite his illness the first time, he tried cannabis again and noticed an effect on his pain levels. His quality of life began to improve and he started to make positive changes.

“I tried cannabis again a few weeks later and by this time the winter was in full flow and my bones were aching. I noticed that I was in less pain when I took it. I prayed for guidance on the issue and felt it was not a sin for me to use cannabis because it was helping to alleviate my symptoms.”

“I then started to use cannabis more frequently. When I reached 19, I no longer needed to take my Voltarol Retard prescription and I was able to cancel an appointment for gold injections. As my condition had relented I was able to reengage with my passion for sport and would swim a mile per day, cycle to and from work and work as a scaffolder during the day.”

“I studied A levels at night school. I returned to studies as I felt if my condition worsened I would not be able to engage in physical labour and I also had a calling to be a lawyer. Anyone who has handled scaffolding tube on a cold winters day will also understand why I felt a move indoors could be a welcome change.”

Joe did well enough in his A levels to gain a place to study law at university. He qualified as a solicitor and worked at one of the top regional practices in the country. He had the honour of meeting Irish President Mary McAleese on one of her trips to Manchester. He credits being able to live such a full life to the benefits of cannabis.

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Breaking the law

However, he was starting to worry about what could happen if his use was to become public knowledge. Especially as someone working in law.

“Cannabis had managed my condition so effectively that I was able to play football for the corporate team and had no outwards signs which could not be dismissed as being down to simple stiffness. I was concerned however that should my use of cannabis become public knowledge my career would be brought to an abrupt end.

“I was leading a double life – cannabis at the time was dismissed as having no medical use and I was afraid no-one would believe me if I said I was taking it for my arthritis.”

Joe stopped using cannabis for three years as he became fed up with breaking the law. He had also noticed attempts to change the law in regards to medical cannabis and wanted to see if he could access it legally. But his symptoms flared up as a result of him stopping his treatment.

“During my cannabis break however my arthritis flared up with a vengeance. Although now prescribed methotrexate, sulfasalazine and naproxen. During my near 30 year use of cannabis prior to this point, I needed no other drugs. Significant bone erosion occurred in this 3 year period.”

“My hands and feet were badly affected and I was unable to form a fist with either hand for about 2 years. I had to stop playing classic guitar. In addition to studying law, I also studied music and played guitar in ensembles and gave performances with others in my spare time so losing the ability to play was quite hard to take”

Joe was delighted when his prescription for cannabis was approved. After taking it for about a year, he found his condition far more under control and began to come off some of the drugs he had been prescribed. He was also able to play the guitar again.

One of the biggest things, he notes, is the feeling of being able to access his medication responsibly and not break the law.

“Cannabis, for me, does have limitations. Once I take it, I won’t drive for the rest of the day. It can give me mood swings although nothing too extreme. I can be grumpier in the mornings. I am mindful that all drugs have their side effect. I am losing my hair due to methotrexate which gives me a number of bladder issues as well as nausea.”

Emigration: two hands packing a suitcase with clothes ready to travel

Emigration and settling

Although Joe is happily settled in the UK with no plans to move home, he still has family in Ireland who he would like to visit. This presents him with an issue, how to pack his prescription?

READ MORE  Brexit threatens to leave children without access to medical cannabis

Going without cannabis while abroad can result in a lot of pain as Joe discovered when he stopped taking it. However, bringing it with him can result in having to again break the law. The other alternative is accessing the black market which is not safe for patients.

“My elderly parents live in Ireland and I would love to visit them. Ireland’s policy on drugs is different to that of the UK. There is nothing unusual about this as individuals states have their own laws. The UN passed the psychoactive Substances Convention in 1971. The Convention enables international travellers to bring their medication with them to other jurisdictions, even though they have different drug policies. Ireland is a signatory to this convention. The Irish State also supplies details of who to write to seek prior approval for the carriage of controlled drugs.”

Seeking approval

Joe has started an email and letter campaign of writing for help. He is not the only Irish person in the UK who has experienced emigration and wants to travel home. He encourages others to get involved.

“I have on many occasions asked both the relevant Secretary for Health and the Minister for Health for permission to travel to Ireland with my cannabis prescription and for clarification of Ireland’s drug policy for tourists and have pointed out the large numbers of people who could be affected. It’s not just persons prescribed cannabis if Customs is going to seize all controlled drugs.”

“Although nearly 6 months have passed, I am yet to receive either a formal approval or rejection of my request to travel home. In the meantime, my parents are of course getting older as indeed am I.”

There are also other concerns about using cannabis medicine while in another country besides emigrating.

Joe cautions: “To anyone who is thinking of just leaving their cannabis medication at home in the UK and then driving in Ireland, please bear in mind that in addition to dealing with withdrawal symptoms you may also fail a roadside drugs test.”

“It’s not at all clear that you will have a medical defence to a drug driving charge in Ireland. Thus if you want to travel lawfully with a car, consider not taking your cannabis prescription for sufficient time to pass a drug driving test, but obviously, this is impractical for sick people who are only granted a prescription for cannabis where other medicines haven’t worked.”

Joe advises that those thinking of travelling to Ireland with their prescriptions for CBMP should seek approval for their medication. This can be done by writing to the Controlled Drugs Unit in Dublin.

Catch up on part two: Adrienne’s story in our series on medical cannabis and emigration.

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