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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.”

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“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.”

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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.”

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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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Scottish MPs back medical cannabis patient following police action

Medical cannabis patient Liam Lewis and his husband are “overwhelmed” by the support they have received.

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Medical cannabis patient
Lerwick police, on the isle of Shetland, seized Liam's medication from his local delivery office.

A Shetland MP has voiced his support for a medical cannabis patient who had his prescription seized by police.

MP for Orkney and Shetland Isles, Alistair Carmichael, has described what happened to medical cannabis patient Liam Lewis as “disproportionate” after Lerwick police seized his medication from his local delivery office on Saturday 22 January.

The 28-year-old, who suffers from functional neurological disorder, has been prescribed medical cannabis for chronic migraines from Sapphire Medical Clinic for two years.

Liam attended the police station later that day with documents and medical notes from the clinic and asked if he could present a copy of his prescription when the clinic reopened on Monday.

medical cannabis patient Liam Lewis and husband

Medical cannabis patient, Liam Lewis and husband Edward

However, officers apparently believed that the documents were fake and issued him with an official warning which will become part of his criminal record.

Liam is now facing up to three months without his medication.

Mr Carmichael, Lib Dem, and MSP Beatrice Wishart are now said to be preparing to make representations to Police Scotland.

Speaking to the Shetland News, Mr Carmichael said: “This is a massively unsatisfactory situation for Mr Lewis or anyone else to be relying on medicinal cannabis which is now legally available in the UK.

“If Mr Lewis had a prescription, as I understand to be the case, then surely he could have been allowed time to produce that for the police officers.”

He added: “Beatrice [Wishart] and I will be making representations to Police Scotland – there is a public policy issue here about them apparently denying access to medicine.

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“There may be some technical reason why the medicine should not have been distributed in this way, in which case that needs to be dealt with.

“In the meantime, this will count as a criminal record, it will stay on his [Liam Lewis] criminal record, and to my mind this is disproportionate.”

Liam and his husband Edward told Cannabis Health that police officers had been in touch following the incident, after his story appeared in the Scottish press.

The couple are calling for a Government-funded identification card to be issued to patients who hold legal prescriptions to avoid them facing law enforcement. 

Edward said: “We are overwhelmed by the support that this issue is getting. The more traction this gets the better, as we want to make sure that others do not find themselves in this situation.”

He added: “I thank Alastair Carmichael for his support and we hope this goes a long way, not just to solve the immediate problem, but also the wider social issues behind this.”

In a statement to Cannabis Health on Wednesday 26 January, a spokesperson for Police Scotland said: “A 28-year-old man was issued with a recorded police warning following the seizure of a controlled substance which had been found by officers within a sorting office in Lerwick on Saturday 22 January.

“He was unable to provide satisfactory evidence to police that the substance had been prescribed legitimately by a medical professional and when the recorded police warning was given to him he accepted it.

“Officers will continue to engage with him as we try to establish the full circumstances of the situation.”

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A spokesperson from Sapphire Medical Clinic, commented: “We are unable to comment on individual cases due to patient confidentiality. However, it’s important to highlight that medical cannabis was legalised for prescription in November 2018 across the UK.  As the only medical cannabis clinic registered by Healthcare Improvement Scotland, we abide by stringent regulations which include assessment by a specialist doctor and the requirement that prescriptions are dispensed by an approved and licensed pharmacy.”

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Boris Johnson faces fresh questions on NHS access to medical cannabis

In the midst of the Number 10 party scandal, the Prime Minister faced questions about NHS access to medical cannabis.

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Prime Minister Boris Johnson, 10 Downing Street in London, medical cannabis

In the midst of the Number 10 party scandal, the Prime Minister faced more questions about when patients would see NHS access to medical cannabis.

Conservative MP Mike Penning, who has been a prominent advocate for medical cannabis access, raised the issue again during Prime Minister’s Questions today (Wednesday 26 January).

Speaking in the House of Commons, Mr Penning, MP for Hemel Hempstead, said: “Many children in this country are suffering from a special form of seizure… which medical cannabis prescribed by a consultant actually helps them live. Only two children in this country get that free on the NHS, the rest are having to beg, borrow and scrape to try and get that prescription issued by a consultant, paid for.”

He added: “I know the secretary of state has the political will, but please push this forward so these children live.”

Karen Gray, whose son Murray has been seizure free for two years on medical cannabis, told the Edinburgh Evening News this month that she was feeling “optimistic” following a “positive” meeting between her MP, Lib Dem Christine Jardine and the Health Secretary, Sajid Javid.

Ms Jardine said her meeting with Mr Javid on Monday had been “much more positive” than her previous contacts with ministers on the issue.

She said: “He is looking for a way to break the logjam to allow the medical profession to feel confident in offering NHS prescriptions for patients with conditions like severe epilepsy.”

Responding in  Parliament, the Prime Minister said he was also “keen to support it” –  before going on to place the responsibility with the MHRA.

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“We’ve already changed the law for doctors to prescribe cannabis products where clinically appropriate,” said Mr Johnson.

“And I’m very keen to support it, provided the MHRA is happy as well.”

Cannabis has been legal for medical purposes in the UK since 2018, but still only three patients are able to access it on the NHS.

The rest are forced to pay up to £1,200 a month for a private prescription.

Charity Medcan Support reached out to the Prime Minister on Twitter following the broadcast.

The organisation, which supports families of children with epilepsy, said: “@BorisJohnson changing the law isn’t enough – we hope to see you at Parliament to hear and meet these families whose children are benefitting at huge costs.”

It might not be the answer many are looking for, but with most political focus on what really happened behind closed doors at Number 10 in the spring of 2020, it’s promising to see some MPs have the will to keep the conversation going.

Irish medical cannabis campaigner, Vera Twomey, pointed out on Twitter: “So happy to see Sir Mike Penning making representation on behalf of UK patients seeking access to medical cannabis. In such turbulent political times it’s great to see the issue raised.”

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Medical cannabis patient ‘distraught’ after medication seized by police

Liam Lewis is “distraught” as he faces three months without his cannabis medication.

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Liam Lewis (left) and his husband Edward Douglas are appealing the decision.

 

A Scottish medical cannabis patient who had his prescription seized by police says he is experiencing a “mental and physical health crisis”.

Liam Lewis, who lives in Lerwick on the island of Shetland, says he is “distraught” as he faces three months without his cannabis medication.

The 29-year-old suffers from functional neurological disorder, which causes severe migraines, which he says left him “bedbound” before medical cannabis treatment.

Liam has been prescribed cannabis through Sapphire Medical Clinics for two years, but on Saturday 22 January, his prescription was seized by police after it arrived at his local delivery office via Royal Mail. 

Liam and his husband say they attended the police station later that day with documents and medical notes from the clinic, and as his prescription had recently been changed, asked if they could present a copy this when the clinic reopened on Monday.

However, officers apparently believed that the documents were fake and threatened to bring charges against Liam.

He was issued with a written police warning on Sunday 23 January.

“Nothing like this has ever happened before,” Liam’s husband and registered carer, Edward Douglas, told Cannabis Health.

“The package arrived on the island on Friday [21 January] but the police dogs were at the delivery office on Saturday morning and the medication was seized. It was only when Liam went to track the package that we saw it had been taken by Police Scotland.

Edward continued: “The sergeant said that people are now coming up with sophisticated ways of sending cannabis and that the evidence we had wasn’t proof enough that it was a legal prescription.

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“We showed him clinical letters and the Sapphire patient portal where the prescriptions are logged, but he said that all of it could be made up. He even said to Liam ‘we know that you are just after drugs’.”

Liam is now in the process of appealing the decision, but says the police warning means that he will be unable to legally access cannabis-based medicines for another three months.

“Before I started using medical cannabis I was practically bed bound and was sick all the time,” said Liam.

“I was agitated and just genuinely dissociated from my body, I was like an observer in my life. Cannabis actually gave me my sense of purpose, because I was able to live again.”

Liam is no longer prescribed cocodamol by his GP – due to the fact that the cannabis was working – so is now left without any pain medication and only anti-sickness tablets to manage his condition. 

“I’m in a mental health and physical health crisis,” he said.

“I feel distraught and I don’t want to go back to feeling completely disassociated from my life again.”

Edward and Liam have 28 days to appeal the decision and plan to approach the Scottish Government’s cross-party group on medical cannabis to urge them to lobby for a state-issued identity card to protect patients from this situation.

“I can be Liam’s voice when he’s too unwell to fight for himself, but there’s people out there who might not have someone who can advocate for them,” added Edward.

“They might be too scared to continue this treatment and that’s who we want to stand up for.”

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A Police Scotland spokesperson said: “A 28-year-old man was issued with a recorded police warning following the seizure of a controlled substance which had been found by officers within a sorting office in Lerwick on Saturday 22 January.

“He was unable to provide satisfactory evidence to police that the substance had been prescribed legitimately by a medical professional and when the recorded police warning was given to him he accepted it.

“Officers will continue to engage with him as we try to establish the full circumstances of the situation.”

Advice for patients

Medical cannabis patients are advised to keep any medication in its original packaging and to have a copy of their prescription to hand, should they be approached by law enforcement.

Abby Hughes, chair of patient advocacy group PLEA (Patient-Led Engagement for Access), said: “Unfortunately some law enforcement officers may not be aware that cannabis medicines are legally available to be prescribed in the UK.

“If meaningful documentation showing legal possession of cannabis is not able to be immediately demonstrated, it is lawful that your medication may be seized. Once sufficient documentation has been provided however, patients are entitled to have cannabis medicines returned.

“If you face any setbacks or are disbelieved even after demonstrating lawful authority, continue to present any thoughts in a calm and structured way. Ask for time to be given to explain that you hold a valid prescription for medical cannabis, and for them to familiarise themselves with the 2018 rescheduling of cannabis-based products for medicinal use in humans, as well as the guidance issued to clinicians by NHS England.”

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A spokesperson from Sapphire Medical Clinic commented: “We are unable to comment on individual cases due to patient confidentiality. However, it’s important to highlight that medical cannabis was legalised for prescription in November 2018 across the UK.  As the only medical cannabis clinic registered by Healthcare Improvement Scotland, we abide by stringent regulations which include assessment by a specialist doctor and the requirement that prescriptions are dispensed by an approved and licensed pharmacy.”

Patients can contact PLEA for support on hello@pleacommunity.org.uk

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