Thousands of MS patients are being denied access to cannabis-based spray, Sativex, despite it receiving NICE approval two years ago.
Thousands of people living with multiple sclerosis (MS) in England are being denied access to the ‘life-changing’ cannabis-based spray, new data shows.
Sativex, a THC:CBD spray was approved for use to treat moderate to severe spasticity in MS patients by the National Institute for Health and Care Excellence (NICE) in 2018.
However, analysis by the MS Society has found the spray is available in less than half of Clinical Commissioning Groups (CCGs).
The findings – published in the report, Approved but Denied: Access to Sativex to treat MS related spasticity in England – reveal that only 49 out of 106 CCGs are funding Sativex.
According to the latest monthly prescribing data (May 2021), only an estimated one in eight of those who could benefit were issued with a prescription for Sativex on the NHS in England.
Over 130,000 people live with MS in the UK, a condition which damages nerves in the body and makes it harder to do everyday things like walk, talk, eat and think.
Up to 80 percent of patients will experience muscle spasms, also known as spasticity, at some point in their life. This can cause severe interruption to sleep and make it impossible to manage daily life.
Chris and Anne Todd, a married couple from Hull, both live with relapsing MS.
Chris was diagnosed in 1999 and has severe spasticity, in addition to other symptoms such as mobility issues and fatigue.
He has been trying to access Sativex for over a decade.
Chris said: “We’ve not had a proper night’s sleep in years.
“The best I get is to pass out with exhaustion. I can’t function and rely on other people to help with things like cooking and showering. I’ve tried every medication to help my spasms, but they’ve either not worked, or given me bad side effects like vomiting.
“It is so frustrating that there is a treatment which could completely change our lives, but we can’t get it. How much longer are we going to have to wait? Sativex was approved two years ago and yet nothing has changed. I can’t go on like this.”
Anne, who was diagnosed in 2005, also struggles with spasticity caused by her MS.
She added: “I know that Sativex is available and is changing people’s lives. It feels like someone somewhere has something against me and won’t let me try this treatment that could change my life.”
While there are other treatments available for spasticity, many of them cause side effects like memory problems, depression and withdrawal symptoms.
A study showed that 41 percent of GPs and 36 percent of MS patients say they are not currently satisfied with the existing treatment options. 3
Now, the MS Society is calling on Clinical Commissioning Groups across England to end the unfair ‘postcode lottery’ and make Sativex available for everyone who meets the NHS criteria.
Fredi Cavander-Attwood, policy manager at the MS Society, commented: “It is completely unacceptable that two years after receiving NICE approval, Sativex is only available in 49 out of 106 health areas in England. MS can be relentless, painful and disabling, and getting the treatment you need shouldn’t be a game of chance. Sativex doesn’t work for everyone with MS, but when it does work, the impact can be life changing.
“Right now, some people with MS are having to choose between living with excruciating spasms or paying as much as £500 a month for a private Sativex prescription – it costs the NHS under £300 to provide the same dose. Some are even being forced to break the law by buying cannabis illegally. This cruel postcode lottery must end, and health bodies across England need to ensure that everyone who meets the criteria is able to access Sativex.”
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