The UK Medicinal Cannabis Mess is Hurting Families and Children
It's not every day I peruse Leicestershire Live in the UK, not a news source I read every day, but like an Avengers movie, kids-in-need have found me again and this is how I got the first message.
And I’m sorry to have the land the Friday plane with a story like this, but it’s a real reminder to me of why we fight against Government for people’s right to have cannabis medicine.
THE SCOOP
A Member of Parliament named Alberto Costa represents Leicestershire and is making noise on behalf of his constituents whose children suffer from devastating forms of epilepsy which give them up to hundreds of seizures per day. Cannabis medicine can help their children – but these families are living in agony while the reefer-mad National Institute of Health dithers.
I've written about his issue multiple times now over the past several years, starting with Billy Caldwell - the boy who changed the law - and his brave mother Charlotte, Alfie Dingley and his mother Hannah Deacon, and others. The UK is moving monstrously slowly in fixing its broken medicinal cannabis program and families are suffering needlessly.
The roadblocks are rather simple, to a logical person: Medicinal cannabis has been legal since 2018 but can only be prescribed by a specialist, not a General Practitioner, which wastes valuable time. Not all specialists are trained to cannabis. The line most use is “We want to rule out every other option (meaning Pharma) before prescribing cannabis because we don’t want to do these children more harm.” Well, the cases I’m seeing have tried up to 20 Pharma options that don’t work, and the way these kids are suffering, you couldn’t do them more harm if you tried.
The second problem is that only a single cannabis medicine has been approved: Epidiolex – and it’s only approved and for 2 specific types of epilepsy: Dravet’s Syndrome and Lennox-Gastaut syndrome. And the British bureaucrats are real box-checkers – so kid, if you don’t have the specific syndrome, you’re fucked.
If the child does check the box, as you can imagine, they might not respond to Epidiolex, because as we know, every person reacts differently to any kind of medicine. But there are other cannabis medicines such as Bedrolite and Bedican that are commonly used, that are effective, that are made in Holland, but the UK bureaucrats continue to whine about how their hands are tied because only Epidiolex is approved therefore everyone not using the single approved medicine are sentenced to suffer while the NIH knits sweaters.
The last problem is the cost – even if a child checks all the boxes, Epidiolex costs 25,000 pounds a year, or about $32,500. The NIH rarely pays for it, even though it’s approved, even though it’s effective, even though it helps end the massive suffering of these children and their families. One family has reportedly lost their home due to the cost of keeping their child alive - something that's really not supposed to happen in a country with socialized medicine!
How bad is this problem? Since 2018, the NIH has only covered 3 children for cannabis medicine. Three.
THE DEEPER DIVE
The parents have formed a group called END OUR PAIN and are going loud to the media which is how I learned about:
· Mya Simons age 10 has 100 seizures per day and is now unable to speak. The family pays 2,000 per month
· Murray Gray started having seizures at age 2. He is now 9 and seizure-free since he started taking Bedrolite. The NIH won’t cover his medicine, which costs the family over $1,000 per month
· Bailey Williams is now 19, and full spectrum cannabis oil has kept him out of the hospital, but his parents can’t afford the $1,200 pounds a month and need the NIH to do their job
· Indie-Rose Clarry is a 5 year-old patient. Her parents are in open rebellion against the cruel government and smuggle Bedrolite and Bedica from Holland and openly admit it to the media.
· Robin Emerson’s daughter Jorja get their cannabis medicine from Canada, and their daughter is seizure free. But their doctor retired, and they can’t get a prescription. 2,000 pounds a month. The headline for this father’s story is “Change the law before my daughter dies.”
THE LOOP BACK
This situation in the UK is a travesty of healthcare based on a century of life-saving medicine lost to reefer madness.
Heartless bureaucrats in the supposed safety net of a healthcare system hold people’s lives in their hands and right now, they’re letting these people slip through their fingers.
It’s heartbreaking and the UK government should be ashamed at letting these vulnerable families and children suffer.
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