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Why changing cannabis medicine could be life-threatening for children with severe epilepsy

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"When you find that winning formula you need to stick to it," says Dr Callie Seaman.

It’s not as simple as swapping children from one cannabis product to another – consistency is key in the treatment of severe epilepsy, warn experts.

Dozens of children who live with rare forms of refractory epilepsy, have been left without access to their cannabis medication as supplies were stopped following the end of the Brexit transition period.

Over 40 patients, who have been prescribed certain cannabis medicines in the UK but can only obtain their prescription through the Transvaal pharmacy in the Netherlands, have just weeks worth of the life-saving treatment left.

In a letter stating that prescriptions issued in the UK ‘can no longer be lawfully dispensed in an EU Member State’ from 1 January, 2021, the Department of Health and Social Care (DHSC) advised pharmacies to find “alternative” prescriptions to switch patients onto.

But experts have warned that it is not as simple as “switching children from one product to another”, as each variant of cannabis product is different and taking epilepsy patients off these specific oils could be life-threatening.

Dr Callie Seaman

Dr Callie Seaman, a plant scientist with more than 20 years experience in cannabis, explains: “Cannabis plants are made up of 565 different secondary metabolites. There are so many different compounds in there and the problem is that we only analyse for THC, CBD and some of the terpenes.

“You can have the same ratio of THC to CBD but there’s so many other components to it which can cause problems.”

She continues: “When the oil is coming from a different supply, it’s grown in a different place and all these factors can influence those secondary metabolites. Even between batches you can get differences and we’re talking about changing to a completely different brand.”

Suppliers also use different carriers, which are made from various sources such as peanut, olive oil or MCT, which can cause their own allergen problems.

Likening it to tomato ketchup, Dr Seaman adds: “Think of it like tomato sauce. Everyone knows that Heinz branded sauce tastes a certain, and yes, you can get Tesco’s own tomato sauce but it’s not the same is it?”

Dr Seaman, who lives with a less complex form of epilepsy herself, explained that consistency was vital in keeping the condition under control.

“Epilepsy is such a complex disease, there are so many different forms of it and everyone has different triggers, she says.

“Epilepsy needs consistency, be it sleep, diet, medication – when you find that winning formula you need to stick to it, as soon as you start changing things that’s when issues arise.”

Many of the children at the centre of this have seen their conditions improve drastically since taking Bedrocan oils, some going from suffering hundreds of episodes a day to being completely seizure-free and living relatively normal lives.

Without access to the treatment the inevitable increase in seizures comes with many risks, the most severe being death and irreparable brain damage.

“Every seizure you have comes with a risk of death,” says Dr Seaman.

“That doesn’t happen to everyone, but there is still damage occurring and there are so many other consequences  that can be triggered.

“With epilepsy, you’re trying to reduce the number of seizures you’re having to none. These children are having anywhere between 150 a day, to some which are now down to 15 or even less.”

Neurologist, Professor Mike Barnes who founded the Medical Cannabis Clinicians Society and obtained the first full license to prescribe medical cannabis in the UK, said the DHSC had shown an “ astonishing level of ignorance” in assuming all cannabis products were the same.

Dr Seaman agrees that the situation shows a major “lack of understanding” and knowledge of cannabis medicines in the UK, specifically when it comes to treating severe epilepsy.

“For patients taking medical cannabis for palliative care and other diseases, a switch in oil is not the end of the world,” she adds.

“It’s great that there are companies in the UK offering to help sort this out, but what’s needed with epilepsy is consistency. Any neurologist will tell you that when you find something works, you have to stick with it.”

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Ireland to fund patient’s medical cannabis up front

Campaigner Vera Twomey described “relief” that her determination has finally paid off.

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Ava Barry medical cannabis patient
Vera Twomey's daughter, Ava Barry has a severe from of epilepsy which is helped by medical cannabis

Campaigner Vera Twomey has described her “relief” as the Irish Government agrees to fund medical cannabis patient’s prescriptions up front.

Eligible medical cannabis patients in Ireland will now have their medication paid for up front, after months of pressure on the Government from campaigners. 

Health Minister Stephen Donnelly announced on Monday 19 July that the refund system for patients who obtain their prescribed cannabis-based products from the Netherlands, will now be replaced by a direct payment system.

The HSE will pay the dispensing pharmacy in the Netherlands directly, rather than the burden falling to the patients and their families, who were then required to apply for a refund.

Vera Twomey, whose daughter Ava Barry, 11, has a severe form of epilepsy known as Dravet syndrome, is among 40 patients who have now been granted an individual ministerial licence to import Bedrocan oil to Ireland.

But the family were paying 10,000 Euros up front every three months for Ava’s prescription and waiting up to five weeks for it to be refunded.

Campaigner Vera Twomey is “delighted” by the news

Twomey, who has four other children, has previously spoken of the huge financial strain this system placed on her family.

Over the last 16 months she has relentlessly called for action, making dozens of phone calls daily to politicians and lobbying ministers on social media with the backing of thousands of supporters in Ireland and across the world.

Twomey, who received a phone call from Ireland’s Prime Minister, Micheál Martin on Monday confirming the news, says she is “delighted” that her determination has finally paid off.

“There’s a sense of relief that we have accomplished this, but also a little bit of shock because we have been trying to resolve it for so long,” she told Cannabis Health.

Twomey’s activism gained national attention in 2017 when she walked from her home in Cork to Leinster House in Dublin to ask former Health Minister Simon Harris to grant access to medical cannabis for her daughter. 

Initially having to travel to the Netherlands to collect the prescription herself, during the pandemic Twomey successfully campaigned to secure the permanent delivery of Bedrocan oils for Ava and other patients.

Now she says she is looking forward to focusing on her family and putting the phone down for a while.

“I don’t think anybody who has gone through this fight, seeing the injustice that we have had to deal with could ever walk away,” she said.

“But at the same time, I’ve made a lot of sacrifices and for the moment at least, I need to give 100 percent to my other children, to do normal things and be a family.”

But the fight in Ireland isn’t over.

The Irish Government announced the provision of funding for the Medical Cannabis Access Programme (MCAP) in January – almost two years after it was introduced – but only four low dose cannabis-based medicines are covered by the programme, for people living with one of three qualifying conditions.

“There are other issues – we still need expansion and improvement in medical cannabis access, the journey is over by any means, but we’re at the beginning and getting Bedrocan recognised as a medicine that is funded up front is very important.

“I think the Irish are actually miles ahead of the British on this one and I hope [politicians] will take notice and catch up.” 

She added: “The greatest gift you’ll ever receive is to lose your fear, then you can accomplish anything with focus and determination.

“If you have the determination to keep going you will get there. It’s not going to be easy, they are not going to make it easy but it can be done.”

Patients eligible for the direct payment system are those suffering from one of three stated conditions; spasticity associated with multiple sclerosis, intractable nausea and vomiting associated with chemotherapy and severe, refractory (treatment-resistant) epilepsy. 

The HSE says it will be contacting patients directly.

Health Minister, Mr Donnelly, commented: “I am delighted that the HSE and Transvaal Apotheek in the Netherlands are implementing a new process which will give peace of mind to the seventeen patients and their families who until now have been using the refund process.”

 

 

 

 

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Kanabo’s cannabis vaporiser for metered dosing launches in UK

The VapePod will give thousands of UK patients access to pain relief in a metered dose.

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Kanabo cannabis Vapepod
The VapePod can administer a measured dose of cannabis extract

Cannabis company Kanabo’s new extract formula and vaporiser will give thousands of UK patients access to pain relief in a metered dose.

UK patients will be the first in Europe to have access to Kanabo’s vaporiser, the VapePod, and its new extract formula when is it delivered later this month.

The deal, in conjunction with LYPHE Group, will see patient’s of LYPHE Group’s ecosystem, including The Medical Cannabis Clinic and Dispensary Green, able to access the VapePod under the brand name NOIDECS.

Under the agreement, PharmaCann and Kanabo established a customised production line for Kanabo’s VapePods cartridges.

An alternative to cannabis flower

The VapePod is a medical-grade, handheld vaporiser which enables accurate and precise micro doses of cannabis extract, dispensing 1mg of formula for each inhalation.

This will benefit to patients as inhaling extracts rather than tinctures and oils allows for faster onset and higher bioavailability.

It will also allow clinicians to more confidently prescribe and monitor a patient’s dosage, as well as providing more accurate patient data.

Previously, cannabis patients in the UK have only been able to access medical cannabis dry flower and oil tinctures for which the majority of patients consume via inhalation due to fast onset time.

Kanabo’s medical line aims to enable patients to move away from the harmful act of smoking medical cannabis flowers as they can now take their medicine without inhaling soot, tar and carcinogens into the lungs.

Kanabo founder, Avihu Tamir

Avihu Tamir, Kanabo’s CEO, said: “The VapePod is a world first allowing specialist consultants to prescribe a metered dose of medicinal cannabis that is healthier for patients than the alternative, which is typically smoking.

“Medical cannabis is a safer alternative to the conventional opiate solutions and other pain management treatments. This announcement ensures that thousands of UK patients have access to the most effective medicinal cannabis delivery system.

“The fact that the VapePod gives exactly 1mg on every inhalation is crucial for GPs because they can prescribe an exact dose which they haven’t been able to do before. For patients who want the similarity to smoking but know they are not inhaling soot and tar. There’s also the bioavailability factor too.

“The reason GPs haven’t been prescribing is the issue of dosing and flowers – they don’t feel comfortable asking patients to smoke. With Kanabo, they can prescribe exact dosing in a safe and consistent way.”

The medical extract formula, which is based on the Israeli medical cannabis pharmacopoeia as a recommendation for the treatment of pain management, has a purity of 70 percent THC with 15 percent minor cannabinoids and terpenes.

Earlier this year Kanabo became the second cannabis company to list on the London Stock Exchange.

Dean Friday, LYPHE’s CEO commented: “Kanabo are experts in novel delivery with their VapePod greatly improving onset times, and for our chronic pain patients we now have an alternative to flower vaporisation. This is the start of a revolution in medical cannabis application and we are delighted to be supplying it under the NOIDECS brand.”

 

 

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Mental health

Cancer survivors turn to cannabis for physical and mental health – study

Cancer survivors are more likely to use cannabis to help pain, anxiety, sleep and nausea. 

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cancer
Cancer survivors are more likely to use cannabis to help pain, anxiety, sleep and nausea. 

Cancer survivors are frequently using cannabis to manage physical and mental health symptoms, says a new study.

Research from the US indicates that cancer survivors are more likely to use cannabis for symptoms such as pain, anxiety, trouble sleeping and nausea. 

A team of investigators analysed results from a Covid-19 cannabis health study to examine changes to cannabis use, methods of cannabis delivery, and coping strategies among cancer survivors since the pandemic.

They found that individuals with a history of cancer are more likely to report cannabis use to manage mental health and pain symptoms.

This group of people were also more likely to report fear of a Covid-19 diagnosis, compared to adults without a history of cancer.

Data was collected from 158 responses between 21 March 2020 and 23 March 2021, from cancer survivors who identified as medicinal cannabis users.

These were then compared to medicinal cannabis users without a history of cancer of the same age.

According to the study, cancer survivors were more likely to report using cannabis as a way of managing nausea/vomiting, headaches or migraines, seizures, sleep problems or as an appetite stimulant.

Specifically, self-reported symptoms most frequently managed by medicinal cannabis among respondents included anxiety and pain. 

Sixty one percent of respondents with a history of cancer used cannabis to manage anxiety symptoms and 54 percent for chronic pain.

Forty eight percent said they used it to manage depressive symptoms and 25 percent for PTSD, while smaller numbers used it for symptoms of another autoimmune disease, and irritable bowel syndrome. 

While there were no differences in how often they used cannabis or their method of administration, cancer survivors were “more likely to have an advanced supply of cannabis”. 

The findings support the need for more conversations between doctors and their patients about the use of cannabis, say those behind the study.

The authors concluded: “Overall, we observed that cancer survivors are frequently reporting the use of cannabis to manage both physical and mental health symptoms associated with their cancer diagnosis and that cancer survivors are more likely to report fear of a Covid-19 diagnosis compared to those without a history of cancer. 

“Given the frequency of mental and physical health symptoms reported among cancer survivors during the Covid-19 pandemic period, clinician–patient interactions should include questions around cannabis use, particularly those with a history of cancer.”

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