1. ITV Report

Campaign for £75,000 'wonder drug' to be funded on NHS

Mark Womersley from Norwich wants to take the drug Spinraza. Credit: ITV News Anglia

People living with a rare debilitating condition are hoping health chiefs will reverse a decision not to fund a new 'wonder drug'.

Spinraza has been proved to be highly effective for treating spinal muscular atrophy, but one injection costs £75,000.

It's been deemed too expensive for the NHS, but others disagree. The treatment is already available in 25 European countries including Scotland.

Mark Womersley from Norwich, who has the condition, says it could be a life-changing treatment for him.

A decision on the drug will not be made public until later in March.

  • Click below for Natalie Gray's report

Mark Womersley's parents were told he wouldn't live beyond 21. He is now 51, but his condition is getting worse.

He wants to take the new drug Spinraza because it could prolong his life and might help regain movement in his arms.

He said: "I've got three grand children. I can't hug them which is like a big sort of thing.

Cost of one injection of the drug Spinraza

"I remember another major milestone in my life was when my mum died and I was the only one with her and I couldn't hug her. I used to drive as well which I hope would be a possibility again."

Mark's condition was diagnosed when he was 18 months because he wasn't walking like other children.

These days he is a comedy performer regularly appearing in Norwich.

George Woodward from Ipswich has spinal muscular atrophy. Credit: ITV News Anglia

Patients in America have been taking Spinraza with astonishing results.

It is government funded in 25 countries in the EU, and in Australia, Canada and the US.

But the health agency NICE which advices the NHS on drug approval says it's just too expensive - one injection costs £75,000.

But there are plenty who argue that it is money well spent.

Rob Burley, from Muscular Dystrophy UK, said: "We know from families who received the drug for SMI Type 1 that for the first time they are seeing their children sit up, crawl and lead a more active childhood which wouldn't have been possible before.

"Without treatment children with SMA Type 1 will perhaps never even sit up that's the impact this drug can have."

One injection of Spinraza costs £75,000.

George Woodward from Ipswich lives with the same condition and his parents say everyday the disease is destroying his body.

If the decision is reversed then children like George, and adults like Mark might just have a future.

The result though won't be known until later this month.

The drug is not currently available on the NHS. Credit: ITV News Anglia