It’s been heart-breaking to see the stories of Billy Caldwell and Alfie Dingley being denied access to medicinal cannabis. No one should have to go through the lengths their parents have gone to get a life-saving treatment.
Watching the public and political momentum build for the legalisation of cannabis for medicinal use, in light of these stories, has been remarkable. We are at the crossroads of joining the growing list of countries offering cannabis on prescription, and I’m really hopeful about what that means for people with MS.
A change in the law could see around 10,000 people with MS who haven’t been able to find any other treatment for their pain and muscle spasms get some relief. These symptoms can be relentless and exhausting and make it impossible to manage daily life.
There is a cannabis-based drug called Sativex which is licensed as a treatment for MS. But you can’t get it on the NHS unless you live in Wales. That means it’s only really available to people who can afford a private prescription – which costs at least £2,000 a year. For many people with MS this prohibitive cost leaves Sativex out of reach.
Nicky, a mother of two who was diagnosed with MS more than 20 years ago, first tried Sativex around five years ago. She had tried other treatments to help with muscle spasms and stiffness, but she couldn’t tolerate these medicines. They gave her headaches, made her legs like jelly, and even made her hallucinate.
She says Sativex transformed her life - it took away the pain and allowed her to think about something other than MS. Over the years this prescription has cost her more than £25,000. She and her family have had to cut back on lots of things to be able to pay for it, but she says she can’t stand her children seeing her crying in pain, so the sacrifices have been worth it.
Steve has lived with MS for 30 years and the condition causes excruciating cramps and rigidity in his legs. He has no control of his left leg from the knee down and this makes walking practically impossible. Staying active had been really important to Steve, but as his condition deteriorated he found he could only do a few minutes of exercise before the cramps started. A treatment he had tried took away his pain but would have made him need to use a wheelchair permanently. He said he would rather endure the pain to be able to keep his limited mobility for as long as possible.
However, with Sativex, Steve saw a huge improvement in his quality of life. It helped him sleep and exercise again. But he’s had to save up his disability benefits to pay for the treatment. Over the past four years he’s only managed to buy about seven months’ worth.
Now that the Government is seriously looking at making a legal route for medicinal cannabis available, we want to make sure people like Nicky and Steve can access the right treatment they need to relieve these symptoms.
We’ve written to the Home Office welcoming the Government’s forthcoming review of medicinal cannabis. We’ve offered to be involved with this review, in order to make sure the voices of people with MS are heard. Nearly three in four people with MS we spoke to support legalisation. And earlier this year, more than 2,600 people told their MP they wanted the Government take action on this.
It’s hard to believe a year ago, when we became the first major health charity to call for the legalisation of medicinal cannabis, we’d be here today on the cusp of a major breakthrough. It’s so exciting to play a part in driving this change. It’s crucial the Government now gets this right in order to make a real difference for people with MS.