1. ITV Report

Family's heart break as health agency fails to endorse drug

A family from Ipswich have been left devastated after a health agency failed to endorse a drug that they say could halt their son's progressive disease.

George Woodward Credit: ITV Anglia

Six-year-old George Woodward has spinal muscular atrophy.

A new drug, that's been shown to improve symptoms of the condition, is available in dozens of other countries, but might not be made available here.

I’m in my chair and others are kicking the ball and running and that is not fair

– George Woodward
Family's heart break as health agency fails to endorse drug Credit: ITV Anglia

Spinal Muscular Atrophy or SMA is a progressive genetic condition that causes muscle deterioration resulting in problems with movement and breathing.

George's parents say he's a fighter but everyday they see how the disease is destroying his body.

A new drug called Spinraza has been revolutionising treatment of SMA. It's available and government funded in 22 countries in the EU and in Australia, Canada, Japan and the US.

But the health agency NICE, which advises the NHS on drug approval, have not recommended for it to be made available here.

Seeing him struggle and watching him on a day-to-day basis struggle and to think there's something out there that could help George we’re just devastated, terrible news, just heartbreaking. How can they let this happen to all these poor families out there.

– Laura Barber & Lee Woodward, George's parents

The National Institute of Health and Care Excellence, who made the recommendation told us they 'would welcome further discussions about access' to the drug.

And they noted there were 'substantial benefits' but the cost 'is too high for it to be considered a cost-effective use of NHS resources'.