DOZENS of seriously ill children in the UK are facing “a death sentence” as their life-saving medication is withdrawn from the market.
Since cannabis-based drugs were made legal in the UK to treat epilepsy, around 100 children are understood to have obtained a prescription.
However, their families have had to fund it out of their own savings.
It’s been worth it though. After years of not responding to any other medicines, these kids allegedly had their lives transformed.
Some went from having hundreds of seizures every month, each having the potential to kill them, to almost none, their parents say.
Three youngsters are even said to be in complete remission thanks to the oil.
But red tape has hindered families from accessing UK manufactured products.
Instead, they have had to rely on a medication imported from Israel, called Celixir20.
However, manufacturer Breath of Life Pharmaceuticals has shut down for good – leaving parents in a desperate situation.
The alternatives that are available come with a huge increase in cost.
Mums and dads who previously saw their youngsters thrive now face forking out thousands of pounds more a month or switching to a less effective replacement and watching their child slip away.
Emma Appleby, mum to 13-year-old Teagan, who has a rare chromosomal disorder which can cause 300 seizures a day, said: “Celxir20 isn’t a miracle cure, but it is absolutely the best thing she’s tried.
“On it, she’s been able to get her life back – horse riding, surfing, laughing, and joining in like other kids.
“But now we’ve had to switch to a new combination which is less effective.
“She can no longer walk. She’s not able to pick up her fork and feed herself anymore.
“It’s only going to get worse and she’s going to end up in intensive care. Then, who knows.”
Describing the situation as “desperate”, Emma, from Kent, said she simply doesn’t know what to do.
“It is going to cost £2,400 a month for a new medication,” she added.
“I simply can’t fundraise that amount. I’ve had people offering me cannabis oil from the black market but I can’t take it because I can’t trust it.
“Teagan’s seizures are terrible, and the medications she was on helped us so much.”
We need all the help we can get before we lose our children.
Matt Hughes
Recent studies have found youngsters with treatment resistant epilepsy can see an 80 per cent reduction in seizure frequency after two years of treatment with cannabis based-medications.
For some children, the results are reportedly even more astonishing.
Matt Hughes is dad to six-year-old Charlie, who has Lennox Gastaut Syndrome (LGS) – a devastating childhood epilepsy for which there is no known cure.
Children with the condition are not ever expected to be seizure-free and the prognosis for both development and survival is poor.
Prior to beginning treatment with a cannabis-based medication, Charlie would suffer up to 120 seizures a day, his dad said.
But since starting Celixir, his seizures reportedly reduced to only a handful, and he has had almost a year of seizure freedom.
Matt, from Norwich, is so terrified for his son’s future he has joined other families in founding the Medcan Family Foundation.
The organisation is working to help families continue to access these “lifesaving” cannabis-derived medications and, ultimately, obtain NHS prescriptions for them.
Matt said: “We keep being promised change but keep being let down.
“The National Institute for Health and Care Excellence (NICE) has made it clear that in cases like Charlie’s, these medications can be prescribed on the NHS.
“Unlicensed and newer medications are often prescribed for untreatable epilepsies because the point is that traditional, licensed treatments don’t work.
“So far, not a single NHS trust has stepped up to deliver on that.
“I think complex guidelines from the government are delaying production here in the UK and the research they are calling for will take 10 years.
“Our kids won’t live that long.
“We’re terrified. We need all the help we can get before we lose our children.”
‘WE NEED IT TO STAY ALIVE’
A Department of Health and Social Care spokesperson said: “In 2018, we changed the law to allow specialist doctors to prescribe cannabis-based products where clinically appropriate and make it easier to conduct research on these products.
“Licensed cannabis-based medications are routinely funded by the NHS where there is clear evidence of their quality, safety and effectiveness.
“We are taking an evidence-based approach to unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for rollout on the NHS more widely.
“Our medicines regulator and the National Institute for Health and Care Research stand ready to help researchers develop applications.”
There are currently a handful of licensed cannabis-based medicines routinely available on the NHS.
This includes Sativex to treat moderate to severe spasticity in adults with multiple sclerosis, and Epidyolex for the treatment of two forms of epilepsy.
Nabilone, a synthetic form of THC – the psychoactive component of cannabis, is also used to treat severe nausea and vomiting caused by chemotherapy.
This month, the Medcan Family Foundation backed a new campaign led by some of the young people who use cannabis-based medications to control their seizures.
#SaveTheUnicorn is aimed at raising awareness of their plight and is calling for MPs to find an immediate solution for the some 100 young patients currently caught in the confusion.
One of the campaign’s young spokespeople, 13-year-old Jasper Jones, said: “A lot of people will be surprised to hear a kid talking about cannabis, but this isn’t about drugs, it’s about medication.
“It is the only medication that has worked for me.
“I want MPs and doctors to understand what it feels like when they tell us that we can’t have the medication we need to stay alive.”
As well as Charlie, Teagan, and Jasper, the campaign highlights the stories of children whose families have been forced to turn to illegal cannabis because they cannot raise the funds for a private prescription.
Due to limited evidence, only specialists can prescribe cannabis-based products for medicinal use.
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