A report, which analysed data collected from 20 children with severe, treatment-resistant epilepsy over the course of two years, has found that whole plant cannabis treatment resulted in an 86% reduction in seizure frequency. Three patients in the study are now seizure free thanks to the cannabis oil, which contains a range of cannabinoids, terpenes and flavonoids, including THC.
This result far surpasses that of any other epileptic drug (even cannabinoid isolate medications, Sativex and Epidyolex), clearly demonstrating that whole plant cannabis oil could change and even save the lives of hundreds of children.
The studies, performed by the non-profit organisation, Drug Science, also indicated a 96% likelihood of any similar patient with severe treatment resistant epilepsy responding positively to whole plant medical cannabis.
Drug Science Honorary Research Assistant, Rayyan Zafar says “These children are severely unwell, some having 100s of seizures a day, which causes serious developmental delays. We performed an observational, retrospective study (on patients already taking whole plant cannabis tincture) with the guidance of their doctors.”
In addition to the impressive decrease in seizures, the children were also able to reduce an average of 8 pharmaceutical anti-epileptics to 1 after introducing the cannabis treatment.
“We saw a huge change in their physiology and an improvement in overall quality of life.” Says Zafar “The children were able to rehabilitate back into daily routine, return to school.”
These remarkable results bolster the growing body of evidence we already have to prove the effectiveness and safety of whole plant medical cannabis treatment. Growth in cannabis science has exploded over the last 8 years, with a phenomenal amount of research coming from Canada and Israel and around 4000 industry-funded studies currently underway in the UK.
3 NHS cannabis prescriptions
Professor David Nutt says “Medical cannabis is probably the most important advance in medicine in recent years, because of its great safety and wide applicability to many different disorders. Unfortunately, antiquated ignorance and prejudice against illegal drugs as well as a false belief that only Randomised Control Trials can provide evidence of efficacy is causing NHS access to be extremely limited. It’s vital that the U.K government and medical community educate themselves on the rapidly growing evidence of efficacy of medical cannabis.”
Since the 2018 law change that led to medical cannabis being made legally available in the U.K, only 3 whole plant prescriptions have been made on the NHS.
For all other paediatric epilepsy patients, the average cost of this life-saving medication is a staggering £874 per month. As a result, many families are having to sell their homes, take out loans and fundraise to keep their children alive.
the average cost of this life-saving medication is a staggering £874 per month. As a result, many families are having to sell their homes, take out loans and fundraise to keep their children alive
What’s preventing Global Britain from using its position as the largest exporter of medical cannabis in the world to become a leader in healthcare, by opening up this extraordinary treatment to over a million people in the U.K who stand to benefit?
It’s not health risks. Side effects from cannabis medicines are now known to be minimal – not something that can be said for readily prescribed pharmaceuticals, such as benzodiazepines (a type of sedative medication), which are potentially very dangerous.
It’s not lack of evidence either. We have a vast body of real world data to draw from (something which has been deemed weighty enough to base the rollout of COVID vaccines in pregnant women), and thousands of studies too. Randomised controlled trials (RCTs) are in shorter supply as these can be tricky to perform, given the complex nature of the plant and the rarity of some conditions. However, 43% of new cancer drugs given a green light in recent years have received approval without supporting RCTs – something that might be considered appropriate for drugs that are needed urgently or to serve an ‘unmet clinical need’.
It’s not the cost: “You can introduce cannabis at net zero” says neurologist and medical cannabis expert Professor Mike Barnes “widening NHS access to cannabis would reduce hospital stays, medicines, nursing time, physiotherapy, ICU costs and opioids for starters.”
You can introduce cannabis at net zero, widening NHS access to cannabis would reduce hospital stays, medicines, nursing time, physiotherapy, ICU costs and opioids for starters.
– Professor Mike Barnes
Besides which, a new spinal muscular atrophy drug for children that costs £1.795m per single dose has recently been licensed using evidence from 16 children in an open label study. This shows it can be done – £1.7m would cover all UK children currently prescribed cannabis for a whole year.
Pharmaceutical industry resistance
It could have something to do with protecting pharmaceutical companies who work with the BPNA (British Paediatric Neurological Association).
“GW pharmaceuticals have already created isolate cannabis medicines and have a powerful lobbying voice on the other side.” Says Hannah Deacon, whose son Alfie Dingley receives one of three whole plant cannabis prescriptions on the NHS and has now been seizure free for over 600 days. “There’s a place for isolates like Sativex and Epidyolex” she assures “But whole plant medicines are needed for certain conditions and they must be made available.”
It’s not reasonable or safe to offer a cannabinoid isolate in place of whole plant oil, which contains a range of 147 known cannabinoids, as well as a wide variety of therapeutic terpenes and flavonoids. However, one reason for doing so might be that Epidyolex and other patented cannabinoid formulations have already been given Orphan Drug Designation. This provides ten years of protection from market competition by similar medicines, for the treatment of similar diseases with similar indications, to allow the pharmaceutical company more time in which to recoup its investment.
Educational barriers
The barriers are probably also related to the fact that not one medical school in the UK trains doctors on the endocannabinoid system (a complex physiological system that maintains balance in all bodily processes, and interacts directly with cannabis) or cannabis as a medicine, rather than a substance of abuse.
“I tried to get [the ECS] into the medical course at Imperial College, but I was told they couldn’t fit it in,” says Dr Zafar. “There has to be a complete shift in medical schools to update clinical guidance on cannabis and the ECS.”
As well as a lack of education, the support for doctors and framework for prescribing cannabis on the NHS is also non-existent. GPs are currently not allowed to initiate the prescription process. Help is available for clinicians interested in taking it upon themselves to learn more, via the Medical Cannabis Clinicians Society. Although this is desperately needed, the U.K government offers no funding or support for cannabis training or research.
“Over the past 30 years, only 2 new epilepsy drugs have come out. Cannabis is a medicine that could help a large majority.” Says Hannah Deacon, who is determined to help other families in need.
“Cannabis could be funded through an innovative medicine pathway, but it’s not considered to be innovative, even though it can be and will be. It’s an amazing plant with so many opportunities to help people.”
There are currently patents held for cannabis based medications to treat Alzheimer’s, autism, neuropathic pain and even schizophrenia.
Jo Griffiths, mum to 12-year-old Ben who has experienced a dramatic change in his seizures and overall health thanks to whole plant cannabis oil, has been paying £1,852 every month since 2019 for a whole plant cannabis oil prescription.
Jo Griffiths son, Ben, before and after accessing medical cannabis
“Without whole plant cannabis, Ben has no quality of life. He can have up to 300 seizures a day, which leaves him unable to eat, drink or function at all. With cannabis, he lives a happy, fulfilling life and has seen seizure free days for the first time in his life. It’s abhorrent that our financial situation literally determines whether my boy lives or dies. We need NHS access now.”
1 comment
But you haven’t really addressed the ‘why’, Ruby!
It’s corruption amongst senior clinicans. You can’t blame pharma companies or regulators or even the execs at the NHS and NICE. All these organisations are controlled by a handful of senior clinicians who hold all the power. They are the same people who decide what evidence will be accepted, who write clinical guidleines, who chair the NICE committees and advise NHS and individual trusts what to fund. They are the people at the top of the Royal Colleges and the professional bodies such as the BPNA. They are also the people who run the decisive studies and trials
Without their endorsement, recommendation and support, no medicine gets funded by the NHS. Thy say the evidence isn’t yet available and until they get paid fat fees to run studies and trials (which have already been done elsewhere) thay are not going to support funding whole plant cannabis.
Let’s be clear though, even without further research, if they wanted to, these people could simply say yes and the funding would be there. They already approve drugs without RCTs for epilepsy and other conditions.
These senior clinicians are the reason and until they are brought onside, by whatever means are necessary, nothing is going to change.