We both now have hope – MS sisters

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MS Society

Sisters Zoe Bowman and Vikki Langford were both diagnosed with multiple sclerosis a few weeks apart.

But if Vikki was able to get treatment for her form, Zoe has not done it yet.

Indeed, Zoe is the main progressive form of the disease for which there is no treatment on the NHS. Until now.

The NHS Drug Advisory Body, the National Institute for Health and Wellness Excellence (NICE), has announced an agreement with manufacturers of a new drug to make it available in health services in England.

Ocrelizumab is the first and only authorized treatment for primary progressive MS in Europe.

NICE initially refused to support it because of the price charged by the manufacturer Roche.

But now an agreement has been reached, which means that the average cost per patient will reach a little over £ 19,000 a year for bi-annual infusions.

For Vikki and Zoe, this means that they both hope that the symptoms of the incurable disease, including difficulty walking, fatigue and blurred vision, may be delayed as long as possible. Treatment may delay the need for a wheelchair by seven years.

"It was horrible that Zoe did not have anything".

Vikki, 52, who lives in Battersea, London, was diagnosed with recurrent multiple sclerosis in January 2017.

Its form of the disease is in the form of waves followed by periods of recovery, while primary progressive MS worsens.

She said, "It was awful to know that I had a world of treatment choices at my fingertips, but Zoe did not have anything.

"She is my little sister and many of my anxieties about MS have focused on her rather than myself.

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MS Society

"I am delighted that she can now have a chance to hope.

"And it's not fair to Zoe – this decision sends a message that people with primary progressive MS matter and that they also deserve treatment and care."

The disease affects about 90,000 people in England – and the progressive primary version accounts for about 10 to 15% of cases.

"I felt isolated"

Zoe, 43, of Crystal Palace, also in London, said: "I felt so isolated that the doctors told me that nothing could be done for me.

"It was like being discriminated against – it's not my fault if I have this particular type of MS.

"Now that there is a treatment that could work for me, I finally have a glimmer of hope for the future.

"Anything that could help me keep my independence longer would have a huge impact."

Despite NICE's approval, there will still be restrictions that people with primary progressive MS will be able to access because of lack of evidence to benefit everyone.

It is expected that 6,000 to 8,000 people with this condition will be considered for treatment, but fewer than 3,000 of them are likely to receive it at the end.

Geneviève Edwards, of the MS Society, said that NICE's announcement was a "historic" moment and that she hoped the available evidence would show that the treatment would benefit more people.

Discussions are underway to determine whether treatment should be made available to patients with primary progressive multiple sclerosis in the rest of the United Kingdom.