VICTORY AT LAST FOR ARCHIE’S DRUG FIGHT
Family celebrates ‘best present’ for all boys who need treatment
A DEAL has been struck between NHS England and pharmaceutical firm PTC Therapeutics, allowing children to receive a breakthrough muscular drug within months.
Just over 50 boys in England are now eligible to receive Translarna – a drug which could keep those with the condition walking longer – thanks to the groundbreaking deal.
Families across England have faced an agonising two year wait for an NHS decision and now the process begins of delivering the treatment to those who need it.
In April NICE gave NHS England and pharmaceutical firm, PTC Therapeutics, until Thursday July 7 to agree a deal on Translarna, and they are now expected to formally publish guidance within weeks.
Chalfont St Peter based Louisa Hill, whose son Archie has the condition, said: “It’s absolutely fantastic news, it’s the best I could have asked for.
“I rang and told Archie and his reaction was ‘wow’ – he’s absolutely thrilled to bits.
“We’re delighted about the decision and can’t actually believe the boys will be receiving it. It’s a shame it’s taken so long but it will help them so much.”
Mrs Hill said she wants to give all of the children that are eligible ‘a big hug because I feel so proud that we have made a difference’ and thanks go to NICE, NHS England, local MPs and Muscular Dystrophy UK.
She added: “Archie has been struggling mentally over the last few weeks.
“He doesn’t like being different – he said he’s scared he will wake up one day and he can’t walk.”
Mrs Hill celebrated her birthday on Friday (July 8) and said it is the ‘best present I could asked for’.
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.”
Campaign: Archie Hill with his mum Louisa and dad Gary. Below, Archie takes his fight to the top with a visit to Downing Street