Sativex is the only licensed drug in the UK to treat the most challenging symptoms of MS patients, that of spasticity. But why are so many people struggling to access a drug that has been avaialble for 10 years?
Did you know that 80% of people with MS struggle with muscle spasms and stiffness? (1)
As such, numerous treatments have been developed for MS patients to relieve these symptoms, such as physiotherapy, baclofen, tizanidine, and gabapentin, or benzodiazepines such as diazepam and clonazepam.
However many of these treatments are not suitable for everyone who experiences issues with spasticity. So, you’d think more people would be taking Sativex based on this fact? Wrong! Eligible people with MS have been struggling to access Sativex even though it has been licensed and made available on the NHS for over 10 years in the UK. Leading individuals down a costly or sometimes illegal path.
Spasticity
Spasticity treatment incurs a high cost for health and social care systems (2) due to the numerous drugs and medical teams involved to help manage just one patients care plan.
Care teams for spasticity can include a neurologist or rehabilitation medicine specialist, an MS or spasticity specialist nurse, a physiotherapist, and an occupational therapist (7).
Unfortunately, it is very difficult to estimate the true costs associated with spasticity due to the variety of ways it is managed from patient to patient. It is also important to note that cost estimates cannot take into account the affect that spasticity has had on someone’s ability to work, which we know costs an individual a vast amount of money due to their inability to work when symptoms are at their worst.
With this in mind, it would seem reasonable to think that if there was an effective treatment out there, that was also cost effective, that this would be readily available to those in need of it?
However, time and time again, MS patients are being offered drugs that are ineffective and costly.
In a study in 2014 (3) showed that 41% of doctors of patients with MS spasticity and 36% of patients with MS spasticity aren’t satisfied with the effectiveness of their spasticity drugs.
It has also been found that treatments such as benzodiazepines, cause side effects that many can’t tolerate, including memory problems and depression if they are stopped suddenly (4).
It has also been well documented, that one third of people continue to have problems after receiving the first drugs they are offered and need a combination of medicines to treat their spasticity. (4 & 5) which again, is hugely costly to the NHS.
For those who don’t respond well to treatments or can’t tolerate the side effects have limited invasive options, such as having a baclofen pump surgically implanted which requires a lumbar puncture, which is again, a highly expensive procedure.
Sativex
Sativex didn’t become available at the easiest time. It was first approved in England shortly before the COVID-19 pandemic hit which impacted the uptake on the treatment by clinical commission groups (CCGs).
Yet, Sativex is ultimately an incredibly cost effective treatment for spasticity. The first three vials of Sativex are completely free from the pharmaceutical company who manufacture it on a Pay-Per-Responder scheme which means CCGs who choose to fund Sativex would only be paying for a treatment that works. After three vials, both the doctor and patient would be able to see the effects and whether continued treatment would be viable.
Yet, Sativex is only funded in 46% CCGs in the UK. That works out as 49 out of 106.
Of the 49 CCGs who have chosen to fund Sativex, only 21 had listed it as suitable for shared care, while 18 have labelled Sativex as unsuitable for shared care, stating that only specialist doctors should prescribe this medicine, despite NICE’s recommendation on shared care arrangements for Sativex.
NICE have estimated that around 4,800 people in England are eligible for a four-week Sativex trial. Yet NHS data on prescriptions suggests only around 630 (13%) people were accessing Sativex on the NHS in England in May 2021
As documented in the MS Societies latest report (6) Dr Eli Silber, consultant neurologist, King’s College Hospital, London said:
“The current limitations on funding for Sativex discourages doctors from prescribing it, leaving them unable to act in the best interest of their patients. This may be partly due the ongoing stigma about cannabis-based products.”
The effects of not-accessing Sativex
Patients are going to great lengths to treat their debilitating symptoms themselves just to avoid ineffective treatments.
In an anonymised survey the MS society conducted in 2014, 22% of people with MS said that they had tried illegal forms of cannabis to treat their MS symptoms. An astonishing number considering that smoking cannabis with tobacco can speed up the progression of someone’s MS. Whilst also risking prosecution for illegally sourcing untreated cannabis.
For those who choose to fund their own medical cannabis treatment, individuals are paying upwards of £500 a month to access Sativex privately in order to manage their symptoms.
Conclusions
It has been found that when using Sativex around 70% of people achieve at least a 20% reduction in spasticity and around 36% to 40% achieve a reduction of 30% or higher. These numbers are incredible given how many people with MS suffer with spasticity.
Whilst it must be said that the overall number of prescriptions for Sativex in England has risen a little following the November 2019 NICE guideline amendments, this number is not high enough.
CCGs need to create a clear pathway for medical professionals to feel confident to prescribe Sativex as well as creating more shared care agreements for hospitals and GPs. The UK government needs to research and prioritise patient access to Sativex, and improve education and support for professionals across the board for this cost-effective treatment to become vastly more available to those in need.
For those that would like to do further reading on this topic, we suggest visiting the MS Society who have a wonderful report detailing in greater detail the extent of the issue with Sativex in the UK.
References