'MND orphan' calls for better access to new treatment

A campaigner who lost his father to Motor Neurone Disease (MND) has called for greater access to a treatment that helps slow the condition's development.

Richard Brailsford, from Witney, Oxfordshire, leads The MND Army group and is calling for "health equality" when it comes to patients accessing the drug Tofersen.

Toferson has been shown to slow and in some cases halt the progress of MND for those with the SOD1 gene variation, but is not yet widely accessible on the NHS.

The Department of Health and Social Care said it was committed to improving care for people with MND and "ensuring they receive the support and treatment they need".

"For £8,000 per patient, someone can get on a treatment that really slows down people's symptoms," Richard explained.

"What we want to happen now is that people get access to this treatment - it is genuinely a drop in the ocean. All I'm asking is, this is our turn now, give us hope."

Richard said he first began fundraising 14 years ago after watching his father get "destroyed by another symptom every single day" during a nine-month battle with MND.

"It tore my heart out - I'm not someone that cries a lot but I'll be really honest I went to bed most nights and I cried because there was no pathway for MND," he said.

"I spent day after day looking for treatments online, and there was nothing."

He said it had been "that frustration, that lack of control, that inability to help my dad", who was his "hero", that led him to campaigning.

Richard said his "legacy" as an "MND orphan" was to "find a cure to change that future for other people".

"For 14 years we've been waiting for something real that could actually positively impact those with MND and we finally got there for the small proportion of people with SOD1," he added.

The SOD1 gene variation is thought to affect about 2% of people with the condition.

Tofersen, made by Biogen, is currently available in England through an early access programme run by its manufacturer while the National Institute for Health and Care Excellence (NICE) considers whether it should be approved for routine NHS use.

In its latest update, NICE said its evaluation is due to begin in late March, with submissions expected in early June.

A Department of Health and Social Care spokesperson said: "Tofersen is approved for use in the UK and NICE is working with the manufacturer on whether to recommend it for routine funding by the NHS.

"If recommended NHS England will work to make it available to NHS patients as rapidly as possible."

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