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“Huge concerns” over Ireland’s “restrictive” medical cannabis access programme

Politicians, activists, campaigners and patients react to the news that CannEpil will be the first drug available through MCAP

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Irish activists, politicians and patients have reacted to the announcement that the first cannabis-based medicine will be available from October through the Medical Cannabis Access Programme (MCAP).

The update to the Medical Cannabis Access Programme (MCAP) has been widely criticised by Irish cannabis patients, activists and politicians.

Despite being introduced over two years ago, MCAP has yet to properly begin. In a joint committee meeting held on Wednesday 29 September, CannEpil+ was announced as the first drug to be made available through the program from mid-October.

The meeting saw officials from the Health and the Health Products Regulatory Authority (HPRA) outline the current state of the MCAP programme and the Ministerial License system.

The suppliers of two products, CannEpil and Tilray are said to have confirmed their prices to the HSE, but Tilray has yet to announce its availability date.  Two more cannabis-based products have been added to the schedule but suppliers are not thought to have current plans to supply the Irish market.

Reaction to MCAP

Irish activist and patient, Alicia Maher felt disappointed after watching the online session. She is currently living in Spain as Ireland does not currently cover the costs of her cannabis medication. She feels the government has no intention to expand the MCAP program to include chronic pain conditions.

Read more about Alicia’s story here

Speaking with Cannabis Health News, she explained her initial reaction to the news: “I was absolutely infuriated watching it. They have just come out and said they pretty much have no intention of expanding the conditions for chronic pain at all. They said that there is no evidence for the inclusion of chronic pain. In their HPRA reports from 2017, they actually said that cannabis is the most researched indication and that there is more evidence for chronic pain treatment than there is for Multiple Sclerosis (MS).”

She added: “I couldn’t believe that the product is also going to be high CBD too. It says that it can treat chronic pain but really there is so little THC in it that I don’t know if it will be a benefit to anyone. Professor Brian Lynch, a consultant and paediatric neurologist said in the meeting that he and his colleague won’t prescribe it because of the traces of THC. They just want Epidyolex and that’s it.”

“There is potentially about six months seizure control with Epidyolex and after that, they need whole plant access. They need some THC to control the seizures.”

Alicia also referred to comments from the chief executive of HPRA, Lorraine Nolan on the Denmark model. “Lorraine Nolan said they were following Denmark but she didn’t know if the scheme was GP-led or consultant-led but obviously GPs can prescribe there. She was also wrong about how long the scheme is running. She’s the chief executive of HPRA,” said Alicia.

Earlier this year, several neurologists and patient organisations wrote to Minister for Health Stephen Donnelly with concerns about the products being made available under the scheme, citing fears they are “inappropriate” and “potentially harmful” because they contain THC.

Further reaction

High profile campaigner Vera Twomey, whose daughter Ava Barry is prescribed medical cannabis for treatment-resistant epilepsy, also spoke out about the MCAP update.

“It’s good news that another product has been introduced to MCAP but there was so much more to it. For example, the hopes that there would be a constructive review done surrounding the cannabis access programme to include other conditions like chronic pain. It was disturbing to hear that there is very little evidence despite a lot of research being collated since 2017 when the last report was commissioned,” she said.

“I think this has filled a lot of people with dread and a sense of hopelessness. We were trying hard to highlight the issues and other conditions that needed to be added. If they are saying that nothing else is going to be added before the review then that is very distressing.”

Vera continued: “The other thing that struck me was surrounding the Epidolyex medication for drug-resistant epilepsy. It was a success rate in the short term of around 50 percent and not much more. It’s extraordinary to me that we have products like Bedrocan that successfully work to 90 percent seizure control but the professionals are focused on CBD isolate products like Epidyolex. It makes me sad to think that’s the only medication that is going to be offered to children in this country.”

She added: “They spoke about the numbers going through the programme and it seems they are more interested in keeping the numbers as low as possible. It also seems that they are interested in moving patients onto the MCAP to products like Epidyolex.

“I can speak confidently on this, as a few years ago we were asked to do that after we returned from the Netherlands. It’s completely illogical to move a child, who has eventually gained seizure control over seven years, onto something different and run the risk of their seizures returning. I wouldn’t have done it and thankfully we had the support not to.”

Politician reaction

Politicians who have been actively campaigning for a change to Ireland’s cannabis laws were equally outspoken about the meeting.


Speaking with Cannabis Health News, Gino Kenny, People Before Profit TD for Dublin Mid-West commented: “The positive news is that certain people will get cannabis products on prescription from October which is a positive start. There are huge concerns in regards to how restrictive the programme will be. Yesterday’s commitment shows that it will be even more restrictive than we thought because there is only a limited amount of products.”

He added: “It could be so restrictive that only a handful of people will get access. The whole idea of an access programme is that people will get access. People are extremely frustrated with the process.”

Campaigner and council reaction

Peter Reynolds is president of CLEAR Cannabis Law Reform in the UK and an advisory board member of the Irish Medical Cannabis Council. He also commented on the MCAP updates.

“MCAP is a disaster. The Department of Health doesn’t want it, the HPRA doesn’t want it and the Irish medical establishment doesn’t want it,” he said.

“None of the officials charged with implementing it understand anything about cannabis.  You only have to review the completely ignorant things they were saying about Epidiolex, a CBD isolate, substituting for a full spectrum product.”

“Not only do the officials not want anything to do with it but they are under pressure from senior clinicians to block it.”

He added: “The omission of chronic pain from the conditions covered is ridiculous and their argument that there is no evidence to support it is simply them doing the job to close it down that the senior clinicians want.  The products selected are also just a joke and are mainly suitable for pain.  You just couldn’t make it up.”

Read more: ADHD awareness month: There is more to ADHD than stereotypes.”

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TOWIE star Amy Childs launches CBD range in honour of Jorja Foundation

The product range sees a portion of the proceeds going to the Jorja Foundation.

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Amy Childs at the launch of her new CBD range, Jorja Botanicals

TOWIE star Amy Childs launched her new CBD range this week, with a star-studded event that shone a spotlight on the story of six-year-old Jorja Emerson.

Amy Childs was joined by former Love Islanders, Amy Hart and Cara Delahoyde-Massey, alongside her  co-stars, Frankie Essex, Tom Skinner, Carina Lepore, Saffron Lempriere and Mark Ferris, for a heart-warming event celebrating the launch of her new CBD Infused beauty range, Jorja Botanicals.

The signature collection sees a portion of the proceeds going to the Jorja Foundation, which was set up in honour of six-year-old medical cannabis patient, Jorja Emerson.

The event saw The Only Way Is Essex star Frankie Essex, break down in tears as she heard Jorja’s story. Frankie, who gave birth to twins four weeks ago, wiped her eyes when Robin Emerson, Jorja’s father, showed videos of the life-threatening seizures his daughter was suffering before they discovered medical cannabis

Love Island star, Amy Hart has since taken to Instagram to spread the word about the latest political campaign that sees Childs and Emerson petitioning to make medical cannabis more widely available on the NHS

The Jorja Botanicals range was inspired by Jorja, who was diagnosed with a rare chromosome abnormality called 1q43q44 deletion, which has a side effect of life-threatening seizures. Her illness resulted in her being admitted to intensive care on two separate occasions, where Robin was told that she may not make it.

jorja botanicals

TOWIE stars joined Amy Childs for the launch of her new CBD range

To save his daughter’s life, Emerson knew that he had to dig deep and find a treatment that would not only help Jorja but ultimately go on to help others.

At the time it was still illegal to prescribe cannabis in the UK. Emerson joined the campaign to see medical cannabis legalised in the UK in November 2018, and Jorja’s was among the first children to be legally prescribed medicinal cannabis.

In 2021 he went on to create the Jorja Foundation – a charity set up to help other families and children going through the same battles that Robin had to face.

The Jorja Foundation’s core principles are to fund special needs equipment that is not funded through the health system, fund family counselling, private appointments and tests when a second opinion is needed, as well s cannabis-based treatment for children in the UK and to continue to campaign and educate for wider NHS access in the UK for cannabis-based medications.  

Childs commented: “When I saw Robin & Jorja’s story on social media it broke my heart.

As a mum, I couldn’t imagine the pain of being told to take my child home to say goodbye to them. I love that Robin has fought for Jorja & is now helping other families with the Jorja Foundation. 

“I’m so happy that I can help the foundation by being the Creative Director of Jorja Botanicals. We have created some beautiful products for the whole family to enjoy. We will be donating a percentage of the proceeds to the foundation so that we can help as many families as possible. ”

 Emerson added: “ This is the fruition of a lot of hard work over many months and I am extremely proud to launch what is the first family brand in this category. In the coming weeks, we will also be launching a ‘parent’ focused cosmetic range in partnership with our creative director Amy Childs and our premium line of tincture oils.”

 

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Guernsey campaigners react to “unjust” and “archaic” cannabis ruling

Three people were sentenced this week for supplying medical cannabis.

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Guernsey campaigners react to “unjust” and “archaic” cannabis laws
Campaigners on the island have described laws as "archaic"

Campaigners on the island of Guernsey have responded following the sentencing of three people who supplied patients with medical cannabis.

Guernsey’s cannabis laws have been described as “archaic” and “unjust” by supporters of three individuals, who illegally supplied a number of patients with cannabis for medical purposes.

Sixty eight-year-old Michael Clarke, was sentenced to four years in prison for the production of cannabis at the Guernsey’s Royal Court on Monday 20 June.

He had initially been growing it to help his wife, Mandy, who has a neurodegenerative condition that causes chronic pain.

Lucia Pagliarone, 35, a high profile cannabis advocate and the founder of the Guernsey Drug Strategy Campaign, was also sentenced to three years and three months for the supply of a Class B drug after pleading guilty to charges.

The court heard that Pagliarone had been supplying cannabis to a small network of patients who were using it for a range of medical conditions.

According to reports, she was also keeping an amount for personal consumption for herself, her partner and her adult son, all of whom are now said to have a legal prescription for medical cannabis.

Pagliarone’s partner, and the father to her twin girls, Christopher Burnet, was given an eighteen-month suspended prison sentence for supply and possession.

An outpouring of support

Dozens of campaigners turned up at court on Monday to support the trio and many have expressed their sadness at the outcome of the case in the days since.

A spokesperson for the Guernsey Drug Strategy Campaign, who has been working alongside Lucia for the last seven years, said it was an “emotional time” for the community.

“Given our jurisdiction’s archaic laws, the results from the trial aren’t unexpected to me,” he said.

“I find it hard to see people as kind as Mike going through this sort of trauma. Yes, they broke laws, but one must question how people can defend that argument, when the law that was broken is unjust and based on a time when our world leaders and governments openly accepted and even promoted racism.”

The need for reform

The sentencing came just weeks after the government’s Health and Social Care Committee submitted a proposal to look at legalising cannabis on the island, as part of the Government Work Plan (GWP).

Adam Martel, who runs the Medical Cannabis Patients Guernsey Facebook group, agreed that the law reform was needed to reflect the growing evidence base that shows cannabis can be beneficial for a wide range of conditions.

“My heart does go out to all affected in this case. As much as we now have access to medical cannabis via private clinics if eligible, no one is above the law,” he told Cannabis Health.

“The law does need to be updated to reflect the real world evidence, but we have a long way to go to get there and I’m hoping the upcoming review will bring Guernsey and Jersey closer in line with other jurisdictions which continue to relax cannabis laws.”

While costs have reduced as the market grows, Martel said many patients could still not afford the costs of accessing a cannabis prescription through a private clinic.  

He is now campaigning for what he describes as a “community licence” which would allow patients to benefit from the profits of the industry.

“As medical cannabis access is now opened up to cover a wide range of health conditions, a regulated market for all is needed now more than ever, so people have a choice – as they do with alcohol and tobacco,” he continued.

“The private clinics have been a godsend in the Channel Islands, however I deal with dozens of vulnerable patients weekly who simply cannot keep up with the prescription and follow up clinic costs.”

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Medical cannabis patient “forced out” of hometown over housing battle

Danny Wilson says he is being unfairly treated as a result of his medical cannabis prescription.

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Medical cannabis patient "forced out" of hometown over housing battle
Danny Wilson says he is being forced to move away from his hometown of Norwich

A medical cannabis patient says he feels he is being “forced out” of his hometown as a result of unfair discrimination by local authorities

Danny Wilson, who lives in Norwich, says he has no choice but to rebuild his life elsewhere after treatment by local landlords and council officers has “made his life hell”.

The 44-year-old, who is facing eviction from his current property, claims the council is insisting he disclose the fact he is a medical cannabis patient to prospective landlords. 

As a result, he says, all of his applications have been refused.

Wilson, who lives with chronic pain following a car accident several years ago, has been prescribed cannabis by The Medical Cannabis Clinics since 2020.

He survives on employment and disability benefits and is forced to rely on food banks in order to fund his prescription privately. 

Wilson has been served two Section 21 eviction notices from his current tenancy, which the landlord says is due to the property being sold.

However, according to Wilson, the eviction notice only came after he made his cannabis prescription known to the landlord.

Following an inspection, which he says “went badly when he told the agent he was using medical cannabis in the property”, Wilson approached Norwich City Council for help to fund the deposit for a new tenancy.

The council agreed, but has since insisted that he disclose the fact he is a medical cannabis patient, and that he needs to medicate indoors, to prospective landlords.

He says all of his applications have been refused on him disclosing this information, and as a result, he has been prevented from moving from his current home.

“They are treating me differently because of my medication, which they continue to treat as an illicit substance,” Wilson told Cannabis Health. 

“They have made me disclose the fact that I am a medical cannabis user on every application I have made, even though I have informed them it is traumatising me.

“They wouldn’t write to my medical doctor about my case for over a year, and throughout have treated me like a drug user, not a disabled person who is vulnerable and whose life they were making hell.”

Wilson, who vapes cannabis flower to manage his symptoms, says he has been on a number of occasions, if he could medicate outdoors.

One landlord is said to have told him he would not be permitted to vape in the property, as it wouldn’t be “fair” to other tenants. 

“They think it’s unreasonable for me to want to medicate in a safe environment, and to be comfortable,” adds Wilson, who has even installed a carbon filter in his room to mitigate the smell of cannabis.

“There’s nowhere else for me to go, I don’t have a garden and I live on the edge of an estate, the nearest bench is in full view of the public.”

The council is also said to have suggested that he take up residence in a rehab facility for ex-offenders, known locally as House of Genesis. This is despite the fact he has never been charged with a criminal offence.

Wilson, who also has severe anxiety, PTSD and ADHD, says the situation, which has been ongoing for over a year, has exacerbated his mental health issues and left him with physical sores from compulsive scratching as a result of anxiety.

He also claims that he has previously struggled to access mental health services in the area and still cannot access treatment from his local pain clinic, as he is a cannabis patient.

“They have made my mental health 10 times worse – I am broken,” says Wilson, who is now considering moving away from his adopted hometown.

“I just want to rebuild my life somewhere else now, because I’ve had to go through so much here, and it’s degrading,” he adds.

“But I’m devastated because this is my home.”

Cannabis Health has contacted Norwich City Council for comment and to confirm the claims, but has not received a response. 

What the experts say

Stephen Cutter, solicitor and legal services manager for Release, told Cannabis Health: “The laws around prescribed medicinal cannabis are relatively unpublicised, and this could be one reason we see patients suffer from avoidable problems.

“The law is clear in that it treats prescribed medicinal cannabis and ‘illicit’ cannabis, even if used for medical reasons, as two entirely different substances, and both local authorities and private landlords will need to keep this in mind when dealing with patients using their medicine.

“The changes that allowed for prescribed medicinal cannabis, also said that patients weren’t to use it by smoking it though other methods of consumptions, like the use of vaporisers, aren’t restricted.”

He added: “If local authorities are imposing requirements for medicinal cannabis patients to disclose their health conditions and medications to access housing, or if landlords are treating them differently to patients of other medications, then I think those patients could have a range of legal challenges they could explore.

“It’s a huge shame that the stigma that many have towards people who use cannabis is extending now to those using prescription medications.”

Carly Barton, founder of Cancard, an organisation which supports cannabis patients facing discrimination, added that while a housing authority or council may request a copy of a patient’s prescription, they “do not have the right to challenge where the patient is consuming the medicine, so long as it is being consumed as prescribed ie. by a vaporiser.” 

She said: “The regulations here are clear and in this case the patient has the same rights to take their medication as any other prescription medication.”

Patient advocacy group, PLEA (Patient-Led Engagement for Access), is also supporting Wilson with his case.

 A spokesperson said: “Public authorities have a legal duty to respect your human rights as well as follow the Equality Act 2010. This prohibits degrading treatment and discriminating against you as per Article 3, and 14 of the Human Rights Act. 

“PLEA would be concerned to learn of any local authority that would require a disabled patient to disclose their prescribed cannabis and medical condition/s to prospective landlords, in order for them to receive support in gaining access to housing, and in doing so subjecting them to degrading behaviour, which carries the risk of long-lasting psychological harm. 

“If a local authority, has practices, rules, or policies that places disabled patients with cannabis-based prescription medicines, at a particular disadvantage then this could be grounds for discrimination, and we would encourage anyone to seek support in such matters. Especially if this was not, something expected, or required of patients prescribed any other controlled medicines, and as a result the practices, rules or policies, of the local authority places disabled patients with prescriptions for cannabis at a particular disadvantage.

“In this case, PLEA are actively supporting Danny, and will continue to do so until a satisfactory conclusion is reached, and results in Danny being housed in a safe and suitable environment, with the correct support packages in place, to enable Danny to live independently, and without fear of losing his home due to his prescription.”

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