A GROUP of children, including Harry Barnley from Farnham, with Duchenne muscular dystrophy could begin receiving a breakthrough drug for their condition within months, NHS England has confirmed.

In April The National Institute for Health and Care Excellence (NICE) gave NHS England and pharmaceutical firm PTC Therapeutics until July to agree a deal on Translarna, the first drug addressing an underlying cause of the life-limiting muscle-wasting condition to be approved in the EU.

Translarna could keep eligible children walking for longer, delaying the need to permanently use a wheelchair.

Farnham lad Harry Barnley, who was diagnosed with Duchenne muscular dystrophy in June 2013, is just one of 50 eligible boys in England (60 across the UK), who has faced a wait of almost two years for decisions on NHS funding for the drug.

Without the drug Harry could become entirely reliant on a wheelchair before the age of 12.

NICE recommended Translarna for NHS funding in April. Now a deal has been struck and NICE is expected to formally publish its guidance within weeks. NHS England would then begin the process of delivering the treatment to children who urgently need it.

While the news comes as a relief to families in England who are eligible for the drug, those in Scotland are still unable to access Translarna.

The Scottish Medicines Consortium (SMC) has denied funding for the therapy, forcing some families to consider leaving their homes in order to treat their children.

Robert Meadowcroft, chief executive of Muscular Dystrophy UK, said: “We are delighted with this long-awaited news that an agreement has finally been reached between NHS England and PTC Therapeutics.

“While NICE and NHS England have been conducting their assessment of Translarna, families have faced a desperately long and frustrating wait and had to endure the heartbreak of seeing their sons decline, while this licensed drug was not available to them.

“We give the boys and their families our huge thanks and recognition of their persistent and dedicated campaigning efforts, and after working together with many charities we are pleased we are now a significant step closer to Translarna at last being made available to eligible boys on the NHS in England.

“However the fight goes on for equality of access to eligible boys in all countries of the UK, not least in Scotland where families and Muscular Dystrophy UK have together urged the first minister to act decisively and urgently to end the current ‘postcode lottery’.

“In Wales and Northern Ireland, there is a clear understanding they will follow NICE guidance when it is published.”