Dozens seriously ill UK children are “suffering a death sentence”, as the life-saving medications they were taking off the market.
Around 100 children have reportedly obtained prescriptions for cannabis-based medications in the UK.
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Their families had to pay for it from their savings.
The effort was worth it. These children’s lives are said to have been transformed, after they had not responded to any other medicine for years.
Parents say that some children who had hundreds of seizures a month with the potential for death, have now almost no seizures.
According to reports, three youngsters have even recovered completely from their illnesses thanks to oil.
The red tape that has been put in place to access UK-made products is a barrier for many families.
Celixir20 is a medicine imported from Israel that they have to depend on.
Breath Of Life Pharmaceuticals, however, has closed down permanently – leaving desperate parents.
Alternatives are expensive.
Parents who once saw their children thrive are now faced with the choice of paying thousands more per month, or changing to an inferior substitute and seeing their child disappear.
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’t walk anymore. She can’t pick up a fork to feed herself.
Then, who knows?” Who knows?”
Emma from Kent described the situation in Kent as desperate and said that she doesn’t even know where to begin.
“It is going to cost £2,400 a month for a new medication,” she added.
“I simply can’t fundraise that amount. “I simply can’t fundraise that amount.”
Teagan had terrible seizures, but the medication that she was taking helped her so much.
Before we lose our kids, we need to get all the assistance we can.
Matt Hughes
According to recent studies, children who have epilepsy and are resistant to treatments can experience a 80 per cent decrease in seizures after two years with marijuana-based medication.
The results for some children are even more astounding.
Matt Hughes, father of Charlie Hughes (age six), has Lennox-Gastaut syndrome (LGS). This is a severe childhood epilepsy that is incurable.
The prognosis is not good for children with this condition.
Charlie’s dad reported that before he began treatment with cannabis-based medicine, Charlie suffered up to 120 epileptic seizures per day.
Since starting Celixir he was reportedly able to reduce his seizures down to a few and has been seizure-free for almost an entire year.
Matt, from Norwich, is so terrified for his son’s future he has joined other families in founding the Medcan Family Foundation.
This organisation is helping families to continue accessing these cannabis-derived medicines and ultimately obtain NHS prescriptions.
Matt stated: “We have been promised and let down time after time.
“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, no NHS trust has taken action to meet this goal.
I think that the complex government guidelines are causing delays in production and research here in Britain.
“Our kids won’t live that long.
“We’re terrified. “We need to get all the help possible before our children are lost.”
We need it to survive
According to a spokesperson for the Department of Health and Social Care, “In 2018 we changed laws to allow specialists to prescribe cannabis products when clinically appropriate and to make research easier on these products.”
The NHS routinely funds licensed cannabis-based medicines where their safety, effectiveness and quality are clearly demonstrated.
We are taking a scientific approach towards unlicensed cannabis treatments. This is to make sure they have been proven safe and effective, before considering them for wider use on the NHS.
The National Institute for Health and Care Research and our medicines regulator are ready to assist researchers in developing applications.
Currently, there are a few licensed cannabis-based medications that can be found on the NHS.
Sativex, which is prescribed to adults with moderate-to-severe spasticity due to multiple sclerosis and Epidyolex (for two epilepsy types), are included.
Nabilone, a synthetic form of THC – the psychoactive component of cannabis, is also used to treat severe nausea and vomiting caused by chemotherapy.
The Medcan Family Foundation has backed this month a campaign by young people using cannabis-based medication to manage their epilepsy.
#SaveTheUnicorn aims at raising public awareness and calling on the MPs to provide an immediate fix for 100 patients who are currently in a state of 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.
The only thing that worked for me was this medication.
“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.”
In addition to Charlie, Teagan, Jasper and other stories about children, this campaign tells the tales of families who are forced to use illegal cannabis to pay for private prescriptions because they can’t afford it.
Cannabis-based medicinal products can only be prescribed by specialists due to limited research.
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