On National Epilepsy Awareness Week two families share how the condition has affected them and how they’ve found support from others on the journey to accessing medical cannabis.
Epilepsy is one of the most common neurological disorders in the world, affecting over 600,000 people in the UK – including 60,000 children and young people under 18 – and tragically causing 21 deaths every week.
Most people with epilepsy are treated with anti-epileptic drugs, but what if these fail to keep the condition under control, as with one third of patients whose epilepsy is deemed to be drug-resistant or ‘intractable’?
Many families have turned to medical cannabis and seen huge improvements in their loved ones quality of life.
An audit of the impact of medical cannabis in 10 patients with severe epilepsy, published by Drug Science in December 2020, found that there was on average a 97 percent reduction in monthly seizures.
Authors concluded that the impact of cannabis medicines on these patients was ‘remarkable’ and often ‘life-changing’.
But many are still paying thousands of pounds a month for private prescriptions of these treatments and some are unable to access them at all.
With access restricted on the NHS and the use of cannabis medicines still “controversial” among the medical community, many doctors are unwilling to even engage in a conversation about it – meaning it can be hard to know where to turn for advice.
Last year Matt Hughes, dad to Charlie, three, who has West syndrome, and Hannah Deacon, co-founded Medcan Support, an education platform to provide families with the guidance that was lacking when he began fighting for access to medical cannabis for his son.
As well as bringing together scientific research, advice for caregivers and hosting webinars with experts from across the globe, the Medcan Support Facebook group provides a space for members to ask questions and connect with others as they navigate this new field.
Amanda Birch, 41, would never have had the confidence to try her son on CBD oil if it wasn’t for the group, she tells Cannabis Health.
“Our paediatrician and neurologist are both great, but they don’t want to talk about cannabis.
“They just don’t want to get involved in any conversations about it, so where else do you go for support?”
Amanda’s two-year-old Gus also has West syndrome, and suffers around 100 seizures every day.
He has only been taking CBD oil for two weeks, after trying eight different anti-epileptic drugs and being turned down for brain surgery.
“I’ve been asking our doctors about CBD oil for a while and they’ve always said no, but we need help, we have literally run out of options,” says Amanda.
“It’s been constantly on my mind. You need somebody to give you that confidence to try it and the reassurance.
“It’s a really big thing to know that there’s a space where you can ask questions, and hearing actual experiences from other parents is worth so much more. Even just being able to ask for tips, such as how to get the oil into him, because it doesn’t taste very nice – that support is important.”
Although Gus has only been taking the oil for a short amount of time and is yet to see any significant changes, she is cautiously optimistic.
“It’s really hard to feel hopeful, over the last couple of years I’ve learned that hope is actually a really dangerous thing – with each drug and each new treatment method, you hope it will work and when it doesn’t that is just so painful,” she says.
“I’m not naive enough to think that it’s going to stop his seizures, but when you’re dealing with such a complex condition any improvement can make a big difference to yours and their life.
“If it makes his quality of life 10 percent better, then it will be 100 percent worth it.”
Although Amanda would like Gus to have the opportunity to try a full spectrum cannabis oil, she fears the crippling costs that come with the prescription.
“It sounds really back to front, but what puts me off is the fear that if it does work, we’re faced with this huge bill each month,” she admits.
“How could we afford it? The fact that it looks like it is so far from being available to us on the NHS is a big factor.”
The cost is also preventing Amy Errico’s daughter Abbie, 16, from being able to access the cannabis medicines she needs.
Abbie, who was diagnosed with epilepsy at 10 months old, is currently prescribed a broad spectrum oil which costs around £350 a month.
Amy would like her daughter to have a full extract oil, but at her age she is ineligible for Project Twenty21 and would have to pay the full price, at around £1,500 a month.
“I’m frustrated at the moment,” Amy says, speaking to Cannabis Health.
“Things have definitely improved since she has been on the oil but we’re nowhere near at the therapeutic level for her… and £350 a month is a lot of money if you’re on a low income.”
Abbie’s seizures have reduced as she’s gotten older, as a baby she would have hundreds a month, whereas now it’s closer to one a week. But they can last for up to half an hour every time.
“It worries me that she’s in that state for quite a prolonged time, to see your child go through that is just so devastating,” says Amy.
“I will keep pushing, in my opinion, it should be available for everyone, at any age. I’m upset and shocked that they would consider surgery for Abbie, before trying cannabis oil.”
At the age of 43, Amy is also undergoing tests for epilepsy, having suffered seizures throughout her life but never getting a definitive diagnosis.
She recently got a prescription for medical cannabis, but struggles with the fact her daughter still doesn’t have access.
“I feel guilty that I’ve managed to get the oil and at the moment I can’t get it for Abbie,” she says.
“I have had seizures at night, my whole life. My mum took me to the doctors when I was younger and they were quite dismissive, but it’s happening more now, I think because of my age.
“I cannot tolerate artificial lighting, it just shuts my body down and makes me so ill, so I can’t be in the workplace, I can’t even walk into a shop.”
She adds: “There’s a tendency for people to think of epilepsy as someone having a tonic clonic seizure, but there’s aspects that people are not aware of, you can’t necessarily just live your life as everyone else does.”
Amy found Medcan after researching cannabis on her own for around 10 years, it’s been reassuring for her to have support from other parents.
“I don’t personally know anyone else who has a child with epilepsy, so it’s been fantastic to have that support,” she says.
“It’s so reassuring to have someone that is just at the end of the text, who knows what you’re going through.”
Medcan has recently had confirmation of its status as a community interest company and hopes to raise enough this year to begin supporting families with grants and mental health support.
“We will be taking applications for grants for general things like respite, holidays, specialist equipment, the things that families have to go without because they are funding private prescriptions,” comments Matt.
“We also want to support parents with mental health. It’s an area that is often overlooked, with the focus on the children, but so many parents suffer with anxiety, depression and PTSD, yet continue to care and fight for their children. We’ll be linking parents with mental health services and they can also apply for funding to cover costs.”
Its expert committee, which includes cannabis scientist Dr Callie Seaman, paediatric consultant Dr Bonnie Goldstein, neurologist Dr Evan Lewis and CBD expert Jade Proudman, are also working with Drug Science on a new study examining which cannabis chemovar profiles are most effective for childhood epilepsy.
“This will be a more focussed study which we hope will lead to further research, but also allow families and clinicians to make better informed decisions,” added Matt.
“I’d like to thank Hannah, Callie, Jade for their support, they contribute so much, along with Dr Evan Lewis, Dr Bonnie Goldstein.”
For support and information visit www.medcansupport.co.uk
Medical cannabis has ‘96% chance of seizure reduction’ in childhood epilepsy
Medical cannabis has a 96 percent chance of significantly reducing seizures in children with severe epilepsy
New research predicts that medical cannabis has a 96 percent chance of significantly reducing seizures in children with severe epilepsy.
The clinical analysis, conducted by Drug Science, leading scientific body on drugs in the UK, examined the use of medical cannabis in under-18s living with a range of refractory epilepsies.
According to Professor David Nutt, Drug Science founder and investigator on the study, the findings show that cannabis-based medicines are not only safe but a child has a ‘96 percent chance of having a significant reduction in seizures were they to be prescribed.”
The best clinical outcome of typically prescribed NHS medications, such as benzodiazepines or Epidiolex, is “less than 50 percent”, says Prof Nutt.
Researchers carried out an audit of real world evidence on 21 patients with a range of severe childhood epilepsies.
From the patients enrolled in the study there was an 84 percent reduction in seizure frequency across the cohort with ‘no significant adverse events’.
Patients also demonstrated a reduction in the use of anti-epileptic drugs after beginning treatment.
Bayesian analysis of the tendency for medical cannabis to reduce seizures in this group of patients shows that the probability of the next patient showing improvement is 0.954.
This translates as around a 96 percent chance of having a significant reduction in seizures, as well as a ‘significant reduction in other health problems.
These findings were sent to Health Secretary Matt Hancock last week in the hope that it could end a regulatory standoff that is leaving severely epileptic children without access to these treatments.
Epidiolex, which contains pure CBD, is currently available on the NHS for two rare forms of childhood epilepsy in the UK.
But current regulations prevent the use of whole plant extract cannabidiol due to the absence of randomised control trials (RCTs) having proved it as effective and safe.
ProfNutt states that conducting medical cannabis RCTs on children with epilepsy “faces enormous obstacles”.
These studies would require half of participants to stop their current treatment, which would be “wildly unethical, dangerous and could even prove fatal”, he says.
Despite real world evidence showing highly significant improvements for children being treated with medicinal cannabis, it is not currently accepted as evidence by NICE (National Institute of Health and Care Excellence) or NHS England.
“Medical cannabis for severe childhood epilepsy is effectively blocked under current NHS rules, despite convincing clinical evidence on its safety and efficacy,” adds Prof Nutt.
“An insistence on RCTs means we will never be able to help these children.
“Decision makers within the NHS, the British Paediatric Neurology Association and other clinical bodies need to change tack – and accept real world clinical analysis such as ours.”
Matt Hughes is the father of three-year-old Charlie, who was first diagnosed with a form of epilepsy known as West syndrome in 2018, when he was less than a year old.
“Charlie would have upwards of 100 seizures every day. He wouldn’t be able to function or have a normal life,” says Hughes.
“The standard medications that were prescribed on the NHS did very little to help, and came with some pretty dreadful side-effects. Four of the anti-epileptic treatments that Charlie was prescribed were unlicensed for his condition.
““The treatment that has helped Charlie in the most lasting and effective way is a private prescription of medicinal cannabis.”
Charlie is now given a cannabis-medication called Celixir20, which he takes as three liquid doses (each of 0.4ml) each day. The medicine is privately sourced from a company in Israel, where it is approved and licensed for use on childhood refractory epilepsy.
Hughes continues: “He now has fewer than 20 seizures a day and those are far less severe. He sleeps well, eats well and the improvement in his health is self-evident.
“Yet this medicine is still not considered to be clinically effective by UK legislators, simply because it hasn’t been studied with an RCT. In fact, our clinician has told me that he would never recommend Charlie take part in such a study, for fear it would jeopardise his newfound stability.”
Hughes setup Medcan Support last year to help other parents to access and cover the high costs of private prescriptions.
“I have wiped out my own savings looking after Charlie and my story is far from unique,” he adds.
“I regularly hear from people who have been forced to sell their house, just to help their child, or who are doing everything they can to raise funds. It’s a stressful and precarious position for parents, wondering if we’ll be able to afford the medicines that our children need.
“What is absolutely clear to us is that these medicines work. Scientists around the world agree, and the amount of real-world evidence on the effectiveness of medical cannabis is growing.”
Switching CBD medicine in severe epilepsy ‘undesirable’ says Dutch regulator
Dutch medicine regulators have included CBD oil used in the treatment of epilepsy on a list of medicines for which switching providers is deemed ‘undesirable’.
The Medicines Evaluation Board (MEB) in the Netherlands added cannabidiol (CBD) – used in epilepsy medications such as Epidiolex and Bedrolite – to its ‘Wisselen Ongewenst’ list, which roughly translates to ‘Switching Undesirable’.
The list, drawn up by the Dutch independent regulator, includes medicines for which changing to a different manufacturer could lead to serious health issues.
Assembled on behalf of the Netherlands’ Ministry of Health, Welfare & Sport, the list aims to reduce the likelihood of patients suffering adverse effects after changing their medication provider.
The Dutch Minister of Medical Care, Tamara van Ark, has issued her support for the MEB list.
“Patients should not run any unnecessary health risks as a result of switching medicines,” the ministry said in a translated response
Since 2018, CBD can be prescribed on the NHS or privately to children with treatment-resistant Dravet syndrome or Lennox Gastaut – two forms of severe epilepsy that can cause hundreds of seizures per day.
Both conditions are extremely rare and are also notoriously difficult to treat.
When the CBD-based medications, Epidiolex and Bedrolite became available to UK patients in 2018, it was a godsend for many parents whose children suffered from the conditions. Many have remained seizure-free for several months since switching their treatment.
But in January, patients had their supply of cannabis medicines from the Netherlands cut off due to Brexit regulations.
The government informed patients that were a range of alternative medicines and one medical cannabis company offered to provide products to those whose supply had been cut off.
However, experts in paediatric epilepsy warned that there was a “significant risk” involved with switching medications, even to a similar product.
Dr Evan Cole Lewis, director of the Neurology Centre of Toronto (NCT), wrote in a statement in January: “It is imperative that children who are benefiting from a particular medical cannabis product are not changed to another product.”
“It can be highly unsafe and could result in worsening seizures, or breakthrough seizures.”
Bedrocan, the Dutch cannabis producer behind the CBD oil, Bedrolite, said it was ‘pleased’ with the MEB’s decision to include CBD on its list.
CEO Tjalling Erkelens said in a statement: “The decision is in line with what we have seen and emphasised in practice for years; namely that our products cannot simply be exchanged for another product with a comparable amount of CBD.
“Medical cannabis is simply more complex than just CBD or THC. See, for example, the situation in England at the beginning of this year. In addition, dozens of epilepsy patients were at risk of getting into acute problems because they were no longer given access to cannabis oil from the Netherlands due to Brexit.”
Operating across the Netherlands and Europe, The Medicines Evaluation Board assesses medications to determine whether they are safe to enter the market. The independent authority, based in Utrecht, monitors the side effects and associated risks to ‘encourage the proper use of medicines’.
Drugs included on the list were chosen based on the severity of potential adverse effects associated with switching medicines. If a switch could lead to serious clinical problems such as hospitalisation, the drug is more likely to be included.
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