Family take drugs fight to health minister
Working for faster access to new treatments
THE PARENTS of a young boy suffering from muscular dystrophy took their fight to Whitehall with the backing of their MP.
Gary and Louisa Hill, parents to Archie from Chalfont St Peter, and Cheryl Gillan, MP for Chesham and Amersham, lobbied Health Minister Lord Prior of Brampton, who is the parliamentary under secretary of state for health, in their campaign for faster access to emerging treatments.
Along with Nic Bungay, director of campaigns, care and information at Muscular Dystrophy UK, they met with Lord Prior of Brampton at the Department of Health office on Thursday October 13.
Mrs Hill said: “It has been devastating watching my son’s condition worsen while regulators stalled and delayed on approving a drug that could make all the difference to him.
“We need to make sure the NHS fast tracks access to these drugs as soon as they become available.”
Mrs Gillan said: “The entire Hill family have campaigned non-stop to speed up the access to drugs such as Translarna which can help boys like Archie.
“They endured tortu- ous delays through the process of approving Translarna for prescription on the NHS in England.
“There are other drugs under development which could help young patients.”
Mr Bungay said: “We hope that, by throwing their weight behind the campaign, we will be able to get more Duchenne drugs approved and we’ll see even more boys like Archie benefit from these new emerging treatments.
“The Translarna drug funding decision was a major step forward in the fight to beat Duchenne muscular dystrophy.
“And the battle continues with the development of at least two more drugs – Exondys 51 and Raxone – which will help even more people affected by this devastating condition.
“The approval process for Translarna took well over three years: there must not be a repeat of these delays this time around. Every day counts for patients and their families.
“We believe the Government must act as quickly as possible to ensure that these potentially life-changing drugs can be approved in the UK without delay.”
Mrs Gillan said: “Delays are agonising for any patient, but for children and their parents the anguish is compounded.”
The approval process took well over three years. There must not be a repeat of these delays
Campaign: Pictured left to right are Gary Hill, Cheryl Gillan MP, Louisa Hill and Nic Bungay of Muscular Dystrophy UK. Left, Archie Hill