ARCHIE’S NICE DRUG SURPRISE
Joy for family as life-changing treatment gets approval
A YOUNG boy from Chalfont St Peter has won the fight to be given access to a life-changing muscular dystrophy drug.
10-year-old Archie Hill, of Nortoft Road, has campaigned tirelessly for over a year to hear whether he will be granted access to breakthrough drug Translarna, which is said to keep boys suffering from Duchenne walking for longer.
On Friday morning, the National Institute for Health and Care Excellence (NICE) announced it had secured an agreement to recommend the drug.
It is intended to cover access to Translarna for eligible children in England for five years. During this time, 50 children will be closely monitored and their progress compared to that of other boys with the condition. The data gathered will inform NICE’s ultimate decision on funding the drug, when the agreement concludes.
His mum Louisa Hill said: “You can imagine we’ve been absolutely buzzing. I can’t quite believe it. It’s given us the incentive to fight.”
But there are fears that because of the almost 18 month long wait, some children may have lost the ability to walk, meaning they will no longer meet eligibility criteria.
Archie’s campaigning has seen him meet Arsenal football player Jack Wilshere, hand deliver letters to Prime Minister David Cameron and be interviewed on national television.
Mrs Hill said she wanted to thank everybody for raising the profile of the campaign.
“It’s going to make a huge difference to so many boys. It gives them those years,” she said.
But Mrs Hill warned that while it was a fantastic step forward, the fight is far from over.
“We need to find something that halts it completely. This is just the beginning, so one day families like ours don’t have to go through this,” she said.
She was full of praise for Archie and his older brother Leyton, who have been ‘incredible’ to have ‘shown such maturity’ during the campaign.
“Never give up on something you believe in,” she added. “I’m proud of my family, that we have helped make a difference to children’s lives.”
All Archie wants to do, said Mrs Hill, is be able to carry on playing football with his friends, and she admitted the hard times are yet to come: “I’m proud but I look at Archie and still think we have got a tough road ahead. This is the easy bit for him. This is going to help him for the next few years.”
Mrs Hill said she will keep on fighting to find a drug which will stop the condition completely, and will keep on going for Archie.
“It’s kept me going,” she said. “It’s given me a massive focus. It’s driving me forward.”
Cheryl Gillan, MP for Chesham and Amersham, said: “This is wonderful news for Archie and all the boys who can benefit from Translarna. The long wait for NICE’s verdict is finally over and it is the outcome we have all been hoping for. I would like to pay tribute to the Hill family and to all the families involved in the campaign for their tenacious and tireless efforts to reach this point.”
Robert Meadowcroft, chief executive of Muscular Dystrophy UK, said: “Parents of children eligible for Translarna have fought courageously for this outcome, and to give their children the chance to keep walking for longer. This announcement comes as wonderful news and a true victory for the families.
“A Managed Access Agreement means that within a matter of months, NHS England will be supplying eligible children with the first genetic therapy available to treat the condition. It is a chance to transform childhoods.
“However, we are concerned now that it could takes months for NHS England to implement the agreement and get the drug to clinic. Having waited 18 months for a decision, this is a delay boys and their families can ill afford.
“We call on NHS England to act with the urgency and resolve that these children and their families deserve.”