A Lincoln man who has lived with primary progressive multiple sclerosis for 15 years believes “everyone with MS deserves to be on a life-changing drug” like him.
The MS Society says an estimated 65,000 people are missing out on the chance to try the drug, fampridine, in England despite it being available on the NHS in Scotland and Wales.
Andy Ollier was first diagnosed with MS 15 years ago and his symptoms progressed rapidly from there. Multiple Sclerosis damages nerves in your body and can make it harder to do everyday things such as walking, talking, eating and thinking.
He was offered fampridine, which is a symptom management treatment that can help some people with MS significantly improve their walking ability. This was part of a trial at Queen’s Medical Centre in Nottingham.
The 65-year-old has spoken out about the life-changing drug, while the MS Society has urgently called on NHS England, NICE (National Institute for Health and Care Excellence), and the drug manufacturers Biogen to come together and “fix this injustice”.
Andy, who is a retired engineering lecturer, had been unable to walk even short distances without a stick. However, being on the drug for more than 10 years has had a completely transformative effect on his walking, energy levels and hand mobility.
He said: “Often when you have progressive MS you’re left to your own devices with very little support. Fampridine is the only drug that I’ve been offered – it’s that or nothing.
“It’s fantastic that fampridine is available on the NHS in Scotland and Wales, but it’s baffling that it’s not routinely available in England. It’s such a shame that so many people who could benefit in England aren’t being given access.
“Everyone should have the option to try the drug and see if it works for them. It would really help a lot of people with MS to stay more active, which has huge benefits.”
He added: “I’m much steadier on my feet now, and can walk without concentrating or constantly worrying about tripping up. It has improved everything, not just walking, but the movement in my hands and fingers, and my fatigue.
“I have two new grandchildren, and being on fampridine will help give me the energy to do more things with them.”
Fredi Cavander-Attwood, policy manager at the MS Society, said: “Everyone with MS should have access to life-changing treatments, wherever they live.
“NICE’s initial decision to reject fampridine is deeply disappointing, but this isn’t the end of the road. Decision makers must realise the crucial difference that fampridine could make to the lives of people with MS.
“Together with Andy, we’re urgently calling for NICE, NHS England and the pharmaceutical company, Biogen, to work together to fix this injustice.”
The current NICE guideline for MS does not recommend fampridine for use on the NHS in England. In recently updated draft guidelines, NICE once again rejected fampridine for use on the NHS in England, but Andy and the MS Society want to change that as more than 130,000 people live with the condition in the UK.
NICE has now opened up a consultation on the new draft MS guideline and initial decision on fampridine, which closes on January 31. It will give people the opportunity to tell NICE why fampridine must be available on the NHS in England, ahead of them publishing the final guideline in June.
Andy’s specific situation is rare though as the guideline states that people who have already started treatment with the drug on the NHS should be able to continue until they and their NHS clinician think it appropriate to stop. However, this recommendation is not mandatory.