The UK MS Society Launches #ApprovedButDenied Cannabis Campaign
Written by on August 22, 2021
A report released by the MS Society states that not nearly enough medical cannabis patients have been able to obtain medical cannabis through the National Health Service (NHS), despite research and firsthand accounts of its effectiveness as a medicine for MS patients.
The MS Society is taking a stand on the lack of progress and access to cannabis in the UK, especially since medical cannabis has been legal there for almost three years. The organization has created the #ApprovedButDenied campaign to bring attention to the lack of proper access, in addition to a 30-page report filled with data regarding MS patients in the UK.
“Sativex, a cannabis-based spray, was approved in England in 2019 for use in moderate to severe spasticity when other treatments haven’t worked,” the organization wrote on its website. “Despite this, many people with MS are still being denied access to Sativex, because their local health bodies, called Clinical Commissioning Groups (CCGs), are not prescribing it. This has resulted in an unacceptable postcode lottery, with Sativex only funded in 49 out of 106 CCGs. This must change—everyone with MS deserves access to effective treatments.”
The organization’s report states that Sativex is only supported by 49 out of 106 CCGs. The National Institute for Health and Care Excellence (NICE) estimates that 4,800 people are currently eligible for a four-week Sativex trial to see if the medicine works for them, but only 630 people had access to Sativex in May 2021 (which is the most current data that was available at the time the report was written).
MS Society’s Policy Manager Fredi Cavander-Attwood expressed her disappointment at the lack of progress for MS patients in England. “It’s completely unacceptable that two years after receiving NICE approval, Sativex is only available in 49 out of 106 health areas in England,” Cavander-Attwood stated. “MS can be relentless, painful and disabling, and getting the treatment you need shouldn’t be a game of chance.”
The #ApprovedButDenied campaign also puts a spotlight on the unfair status of the “postcode lottery” that determines which MS patients can gain access to medical cannabis. Some people are being forced to choose between living in pain or paying up to £500 per month for a prescription to Sativex (under the NHS, it costs £300). Cavander-Attwood says that often enough, patients are resorting to buying medicine on the black market.
The MS Society also interviewed a few MS patients and published their responses in the report. One patient, cited as Neil, found relief in obtaining proper sleep with Sativex.
“After starting on the Sativex, I had the first good night’s sleep in 10 years. I didn’t suffer with MS fatigue, but I hadn’t realized how much I was running on fumes due to a lack of sleep until I had some sleep. I didn’t realize how tough it was until it stopped.”
Likewise, another patient named Sheila’s symptoms lightened thanks to medical cannabis. “After Sativex, I can exercise my arms and legs with no problems,” she said. “There hasn’t been any deterioration of my MS symptoms. I no longer get any spasms. After Sativex, I can move my limbs without fear that it will set off painful spasms. I can do more, as there isn’t the fear that it will set spasms off. And I had such a lot of pain with the spasms.”
The MS Society’s report includes list of action which calls for CCGs/prescribers, the UK government, the NHS and the manufacturer of Sativex all to take positive steps forward to help the current situation for MS patients.
“Sativex is not a ‘wonder drug’—it doesn’t work for everyone with spasticity,” the organization stated. “But when it does work, the impact can be life changing. People with MS—like Neil and Sheila, who share their stories in this report—tell us their spasms and related pain have disappeared, meaning they and their families are able to live their lives, not just exist.”
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