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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.”

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GMC must address “serious concerns” over BPNA guidelines on prescribing medical cannabis

An open letter has been signed by more than 30 parents and carers of children with intractable epilepsy

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Ben Griffiths, 11, who suffers from treatment-resistant epilepsy

Dozens of parents whose children rely on medical cannabis have written to the General Medical Council (GMC) outlining their concerns about the blocks to access.

More than 40 parents and carers of children who are prescribed medical cannabis to treat conditions such as intractable  epilepsy have signed an open letter to the GMC outlining a number of issues.

Earlier this week, 50 medical professionals issued a letter  from the Medical Cannabis Clinician’s Society, expressing their concerns over the British Paediatric Neurology Association (BNPA) guidelines on prescribing unlicensed cannabis medicines.

The letter, which was published in the Times,  claims that the guidelines play a part in denying medical cannabis treatment for children with epilepsy, many of whom have had their lives significantly improved it.

It includes a comment from an expert witness in a case brought to the GMC by the BPNA, reported as stating that: ‘The BPNA position that only paediatric neurologists should initiate treatment is not supported by other national guidance, and probably not in the best interests of children, as it may impede debate and research into the appropriate use of Cannabidiol (sic) in refractory epilepsy’.

In response the parents of these children say they felt moved to write directly to the GMC to express “serious concerns”.

In the letter they stress that they feel the guidance issued by the BPNA plays a significant role in preventing doctors from prescribing.

It states: “The quote from the GMC expert witness highlights that the BPNA guidance is ‘not supported by other national guidance’.

“From our knowledge of these matters, we believe that this other national guidance may well be that from NHS England, NICE and indeed, to some extent, your own.

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“If a professional medical body is producing guidance that is ‘probably not in the best interests’ of the patient cohort at issue, surely that matter should be investigated and then appropriate steps taken to ensure that the guidance in question is corrected?

GMC must address families denied access

Ben Griffiths, 11, who suffers from treatment-resistant epilepsy, and mum Joanne.

Speaking with Cannabis Health, Joanne Griffiths, mother of Ben, 11, who suffers from treatment-resistant epilepsy, said: “We felt moved, as a group of parents and carers with loved ones affected by intractable epilepsy, to write to the GMC to ask that they address what we believe to be serious concerns relating to the BPNA position on the prescription of medical cannabis following the recent article in The Times.”

Joanne added: “This is clearly extremely concerning and needs to be addressed. The almost total block on NHS prescriptions is causing untold huge emotional and financial distress to our families.”

Open letter

The parents also highlight the ‘dramatic’ benefits of medical cannabis for these children, but says that the lack of prescriptions on the NHS means parents are facing the ‘daunting and emotionally and financially draining’ burden of finding the money to fund the medication privately.

The letter states: “Without exception our loved ones have shown very significant improvements in their symptoms following the administration of medical cannabis.

“In many cases, the improvements could more accurately be described as ‘dramatic’ with children who were suffering up to hundreds of seizures a day and being rendered semi-comatose due to the effects of conventional pharmaceutical drugs being able to lead almost normal drugs.

READ MORE  Ireland's HSE to offer first medical cannabis products from October

“However, since the law change, to the best of our knowledge, there have only been three NHS prescriptions for whole-plant extract medical cannabis for cases of paediatric epilepsy. The rest of us have had to face the daunting and emotionally and financially draining burden of having to find up to £2,000 a month to fund the medicine privately

“Raising this money is a massive challenge in normal times. During Covid, it has been impossible.”

The parents have now called on the GMC to address their concerns, stating that failure to do so may mean doctors may be “unwittingly failing” in their ethical duty to patients.

The letter is open for other parents to sign and can be accessed through the Boisterous Ben Facebook page or Twitter.

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“Children’s lives are at risk” – let GPs prescribe medical cannabis, says paediatric neurologist

Dr Adelaida Martinez has called for GPs to be able to prescribe medical cannabis to children with severe epilepsy.

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Murray Gray has been seizure free for over two years on medical cannabis.

A leading paediatric neurologist has called for GPs to be able to prescribe medical cannabis to children with severe epilepsy.

Dr Adelaida Martinez, a consultant at the Portland Hospital for Women and Children in London, is one of the few paediatric neurologists who prescribed medical cannabis to children with retractable epilepsy.

Dr Martinez, who has now retired, has written to the Health Secretary Sajid Javid outlining her concerns for these patients, who without access to this medication would be left “fighting for their lives”.

The words come following the publication of an open-letter signed by over 50 healthcare professionals about the British Paediatric Neurology Association (BPNA) guidelines, which they say prevent doctors from prescribing cannabis-based medicines.

Dr Martinez claims that she has looked for an alternative paediatric neurologist to take over her patients but this has proved to be “extremely difficult”. According to the letter there is currently only one doctor in the UK taking patients on a case by case basis through a private clinic.

There are real fears among patients and their families that the lack of paediatric neurologists willing to prescribe medical cannabis in the UK will leave patients unable to access this medication at all.

Calls for GPs to prescribe

Dr Martinez wrote to the Health Secretary before retiring just days ago, but so far there has been no response.

In her letter she calls for a policy change to allow GPs to prescribe, as is the case with other unlicensed, controlled medicines.

Currently in the UK only specialist consultants are permitted to prescribe unlicensed cannabis medicines or a GP under the consultant’s direction.

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Dr Martinez wrote: “Children who have epilepsy which is alleviated by cannabis medication should be able to have prescriptions fulfilled by their GPs. This is exactly the same process as already exists for any other type of unlicensed controlled drug in the United Kingdom.

“I know a majority of the GPs dealing with this group of children wish to prescribe but in order to do so this requires a change in policy… because it is CBD medication which has been treated differently to other controlled drugs.”

Future prescriptions

Parents are concerned that their children’s lives will be placed at risk without access to this medication.

According to Dr Martinez, most have been taking it for at least two years and have been “stable or significantly improved” during this time.

Karen Gray’s son Murray, has a rare form of epilepsy known as Doose syndrome. He has been seizure free for over two years on medical cannabis.

Karen told Cannabis Health: “A policy change is all we need to secure our children’s prescriptions. Without this medication, our children’s lives will be at risk. Our GPs are willing to write the prescriptions, however Sajid Javid is the only person that can make this happen.”

Read more: CBD may reduce effects of anti-seizure medication

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California governor signs ‘Ryan’s Law’ allowing cannabis for terminally ill patients

Ryan’s Law is allow for medical cannabis use for terminally ill patients on hospital grounds although it will not allow smoking or vaping

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California: Two white tubs of medical cannabis on a wooden surface. A doctor is writing a prescription

Ryan’s Law or The Compassionate Access to Medical Cannabis Act would allow patients to use medical cannabis in certain situations on hospital grounds.

California Governor Gavin Newsom has signed Ryan’s Law legislation into law to expand end-of-life treatment and pain relief options for terminally ill patients.

In a press release, Senator Hueso who raised the bill stated: “It is inconceivable to me that, in a state where medical cannabis was legalized more than 25 years ago, those in deepest suffering receiving treatment in our state’s healthcare facilities cannot access this proven, effective, and prescribed treatment.”

“Instead, terminally-ill patients in California healthcare facilities are given heavy opiates that rob them of their precious last moments with family and friends. This is a simple, yet critical, move that will provide relief, compassion and dignity to terminally-ill Californians.”

Members of the California Assembly and Senate advanced legislation to the governor’s desk earlier this year, which would allow medical cannabis products in hospitals and care facilities. The bill, Senate Bill 311 provides for a terminally ill patient’s use of medical cannabis within a healthcare facility. It will prevent patients from using inhalers or vapes and bans cannabis from the emergency room.

The legislation was partly inspired by a father who was initially denied access to cannabis at a California hospital while his son was dying from cancer. Jim Bartell eventually gained access to a facility that allowed the treatment and said his son’s life dramatically improved in his final few days.

California Bill

In July, the bill’s sponsor, State Senator Ben Hueso, drafted a letter to the US Department of Health and Human Services to inquire if allowing cannabis use on hospital grounds may cause issues with federal funding. Senator Hueso has repeatedly fought to allow cannabis use in medical facilities for terminally ill patients.

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So far, only a few states allow cannabis products for hospitalised patients such as Maine and Connecticut.

The California State Assembly voted 57-1 to approve the bill earlier in September, and the Senate approved the other chamber’s amendments in a 36-1 vote.

The bill reads: “(it) would require specified types of health care facilities to allow a terminally ill patient’s use of medicinal cannabis within the health care facility, subject to certain restrictions,”

“The bill would require a patient to provide the health care facility with a copy of their medical marijuana card or written documentation that the use of medicinal cannabis is recommended by a physician.

“The bill would require a health care facility to reasonably restrict the manner in which a patient stores and uses medicinal cannabis to ensure the safety of other patients, guests, and employees of the health care facility, compliance with other state laws, and the safe operations of the health care facility.”

California government

Although this attempt has been successful, it was originally vetoed by Democratic Governor Gavin Newsom who was concerned it could create conflict between federal and state law. Newsom has only just defeated a recall attempt after voters chose him over a Republican candidate.

The US Hemp Round Table, A cannabis coalition group stated: “We’re excited to report that a final deal has been reached with Governor Gavin Newsom to move to the final passage of AB 45, our long term effort to explicitly permit the retail sale of hemp-derived extracts such as CBD in California.  And a highlight of that compromise was the removal of language to ban hemp smokables in the state – replaced by a phase-in approach that will permit their sale to adults and the immediate manufacture of smokable products to be sold in other states.”

 “I tried cannabis again and realised I was in less pain”: Read Joe’s cannabis emigration story

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