Summary: “Children suffering with life-threatening forms of epilepsy can now get Epidyolex,
Multiple sclerosis (MS) patients will be offered cannabis-based Savitex spray and the two cannabis-based medications have been approved for use in the NHS”
Thousands of patients will get cannabis-based medicines on the NHS after two drugs were approved for use.
Children with two rare life-threatening forms of epilepsy will now have access to the drug Epidyolex, which helps to reduce seizures.
Patients with multiple sclerosis (MS) will be offered a cannabis-based spray called Sativex which is used to treat muscle stiffness and spasms.
It is the first time drugs containing cannabis have been recommended for NHS use by the drugs watchdog NICE.
Charities welcomed the move, but said thousands of other people who could benefit from cannabis-based medicines were left in limbo.
A change in the law in 2018 made it legal for doctors to prescribe medicinal cannabis.
But many have been reluctant to do so, citing a lack of clear guidance on prescribing and issues over funding for the drugs.
This has led some families to go abroad in search of medicines, with some bringing them into the UK illegally.
The new guidance from NICE looked at cannabis-based products for several conditions.
It approved the use of Epidyolex to treat Lennox-Gastaut and Dravet syndromes, two types of epilepsy which affect around 9,000 people in the UK.
The drug is an oral solution of cannabidiol (CBD) but does not contain any tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis which some parents say is what helps ill children the most.
NICE said more research was needed on cannabis-based medicines before they could approve it for other forms of epilepsy.
It also found that a lack of evidence means people with chronic pain should not yet be prescribed drugs containing THC.
Millie Hinton, from the campaign End Our Pain, said the guidelines were ‘a massive missed opportunity’ to prescribe medical cannabis for thousands of people with a range of conditions.
‘It is particularly devastating that there is no positive recommendation that the NHS should allow prescribing of whole plant medical cannabis containing both CBD (cannabidiol) and THC in appropriate cases of intractable childhood epilepsy,’ she said.
‘It is this kind of whole plant extract that has been shown to be life-transforming for a significant number of children, including these involved in the high-profile cases of last year which led to medical cannabis being legalised.
‘A number of the families that we represent met senior Nice representatives in person only a few weeks ago.
‘They explained first-hand that they were paying thousands of pounds every month for private prescriptions of whole plant extract medical cannabis and that their children were showing dramatic reductions in seizure rates and equally dramatic improvements in quality of life.’
Simon Wigglesworth, deputy chief executive at Epilepsy Action, welcomed the decision to recommend Epidyolex.
But he said there were many thousands of people with other complex and treatment-resistant epilepsies who could potentially benefit from cannabis-based medicines.
He added: ‘Though this is disappointing, we appreciate that clinical research is vital to ensure that any treatment recommended for use in the NHS is safe and effective.
‘We are aware of ongoing efforts to bring forward research into cannabis-based medicines for epilepsy, including those containing THC, at pace.’
Nice also recommended Sativex to treat muscle spasms in MS, a common symptom of the disease.
Genevieve Edwards, director of external affairs at the MS Society, said: ‘We’ve been campaigning for access to Sativex for years, and it’s brilliant Nice has finally listened.
‘These guidelines are an important first step, but don’t go far enough. No cannabis-based treatments have been recommended to treat pain, a common symptom of MS.’
She said evidence shows cannabis-based treatments could help around 10,000 people with MS get relief from pain and spasms when other treatments have not worked.
The families of two children, Billy Caldwell and Alfie Dingley – both of whom have severe epilepsy, have repeatedly campaigned for easier access to cannabis medicines in the UK.
Epidyolex and Sativex are manufactured in the UK by Cambridge-based GW Pharma.
Chris Tovey, GW’s Chief Operating Officer, said: ‘This is a momentous occasion for UK patients and families who have waited for so many years for rigorously tested, evidenced and regulatory approved cannabis-based medicines to be reimbursed by the NHS.
‘This is proof that cannabis-based medicines can successfully go through extensive randomised placebo-controlled trials and a rigorous NICE evaluation process to reach patients.
‘I am hugely proud of the entire GW team for achieving this milestone in the country where the company was founded and where both of these medicines were developed and are manufactured.