We both now have hope – MS sisters
Image copyright MS Society Sisters Zoe Bowman and Vikki Langford were both diagnosed with multiple sclerosis within weeks of each other.
But while Vikki has been able to get treatment for her form of the condition, Zoe has not.
That is because Zoe has the primary progressive form of the disease for which there has been no treatment available on the NHS. Until now.
The NHS drugs advisory body, the National Institute for Health and Care Excellence (NICE), has announced that it has reached a deal with the manufacturers of a new drug to enable it to be available on the health service in England.
Ocrelizumab is the first and only licensed treatment for primary progressive MS in Europe.
NICE had initially refused to back it because of the price being asked by the manufacturer Roche.
But now a deal has been reached, which means the average cost per patient will be below the full price of just over £19,000 a year for twice-yearly infusions.
For Vikki and Zoe it means they both have hope that the symptoms of the incurable disease, including difficulty walking, fatigue and blurred vision, can be delayed as long as possible. The treatment can delay the need for a wheelchair by seven years.
‘It was awful that Zoe had nothing’
Vikki, 52, who lives in Battersea, London, was diagnosed with relapsing remitting MS in January 2017.
Her form of the disease comes in waves followed by periods of recovery, whereas primary progressive MS just gets worse.
She said: “It was awful knowing I have a world of treatment choices at my fingertips yet Zoe had nothing.
“She’s my little sister and a lot of my anxieties around MS have been focused on her, rather than myself.
“I’m overjoyed she could now have a shot at hope.
“And it isn’t just for Zoe – this decision sends a message that people with primary progressive MS matter and they equally deserve treatments and care.”
There are around 90,000 people in England with MS – and the primary progressive version accounts for around 10 to 15% of cases.
‘I felt isolated’
Zoe, 43, from Crystal Palace, also in London, said: “I felt so isolated when I was told by doctors there was nothing they could do for me.
“It was like being discriminated against – it’s not my fault I have this particular type of MS.
“Now that there’s a treatment available that could work for me, I finally have a glimmer of hope for the future.
“Anything that could help me keep my independence for longer would have a massive impact.”
Despite the approval by NICE, there will still be restrictions placed on which people with primary progressive MS can access the treatment, because there is insufficient evidence it will benefit everyone enough.
It is expected that between 6,000 and 8,000 people with the condition will be considered for treatment, but fewer than 3,000 of them are likely to be given it in the end.
Genevieve Edwards, of the MS Society, said the announcement by NICE was a “landmark” moment and she hoped in time there would be the evidence available to show that the treatment was beneficial for more people.
Talks are under way to see if the treatment should be made available to primary progressive MS patients in the rest of the UK.
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