Fampridine (Fampyra) has been given the green light by the Scottish Medicine Consortium (SMC) for people with MS who have a walking disability.
Fampridine will be available to people in Scotland who are scored 4-7 on the Expanded Disability Status Scale (EDSS). The treatment is taken as a tablet.
Scotland is the second UK nation to offer this treatment on the NHS following a decision in Wales to make fampridine available on the NHS for adults with MS.
What is fampridine (Fampyra)?
Fampridine is a symptom management treatment (SMT) meaning that it helps people with the symptoms of their MS as opposed to disease modifying therapies (DMTs) which control the condition itself. Most people are prescribed one tablet in the morning and one at night. It helps about one in three people who take it and can speed up walking by about 25%.
In double-blind phase III studies it improved walking ability in adults with MS and walking problems compared to placebo.
Fampyra helped Nina dance at her daughter’s wedding
Nina is from Inverness-shire. She used to be an Occupational Therapist and has been living with MS for over 25 years. She began taking fampridine (Fampyra) when she moved to the Highlands and has seen a huge positive impact.
Nina told us: “It’s fantastic news that Fampyra will now be available for people with MS on NHS Scotland. I’ve seen first-hand the positive impact it can have so to know that it should now be an option for more people across the country is really welcome.
“When I was first told I’d progressed from relapsing remitting to secondary progressive MS my consultant at the time simply said, ‘there’s nothing to do, just look after yourself’. But when I moved further north I had a new consultant who suggested I try Fampyra and it’s been brilliant.
“I am quite sensitive to drugs so I’ve had to gradually work my way to taking the full therapeutic dose, but it’s had such a huge impact it was worth the effort.
On my daughter’s wedding day I didn’t have to use my wheelchair at all and Fampyra definitely played a role in that. Even when the dancing started I was still standing!Nina lives in Inverness-shire with secondary progressive MS
“One of the main symptoms I experience is shortening of my right Achilles tendon which gives me difficulty walking, so I wear a splint and use two sticks when I’m outside and a wheelchair for longer distances
“Since starting Fampyra I have had more movement in the toes of my right foot, which I hadn’t been able to do for years. And the progression of my condition has been much slower, I have more energy and just feel able to do so much more.
“It still takes a bit more time and I need to think and plan ahead for most activities, but I’m now able to walk further for longer. It helps me feel stronger physically and mentally – it’s like having more charge in the battery.
“I’m a fiercely independent person so it’s been great. I took up a six month, part-time job last year which has paid for a new wheelchair, something I wouldn’t have considered without the treatment. My family now feel more confident about my safety and that they don’t need to offer as much support which is brilliant.
“One of the most fantastic things was on my daughter’s wedding day I didn’t have to use my wheelchair at all which I had fully expected to and Fampyra definitely played a role in that. Even when the dancing started I was still standing!
“A treatment like this is invaluable and so positive, the more people who want to and can access it, the better.”
Rest of UK must follow suit
Morna Simpkins, our Director in Scotland said: “It’s fantastic that fampridine (Fampyra) has been approved for use on the NHS in Scotland. This treatment could be life-changing for many people living with the symptoms of MS – making an important difference to walking and energy levels.
“We are delighted to hear that SMC has accepted the drug but it’s up to our Health Boards to make sure people who could benefit can get it.
“We hope appraisal bodies in other parts of the UK follow suit as soon as possible, so everyone with MS can access fampridine when they need it.”
Too many people affected by MS in the UK have to fight for the treatments, services, care and support they need.
Together we can change that.