A wish came true for nine-year-old Archie Hill, who has the life-limiting muscle-wasting condition, Duchenne muscular dystrophy and wrote to David Cameron in a bid to meet him and ask for his help.
The Prime Minister surprised the youngster from Gerrards Cross and his family outside 10 Downing Street this afternoon, as they handed in a petition calling on the NHS to end delays to a breakthrough treatment, Translarna.
Backed by the Muscular Dystrophy Campaign, Archie was among a hundred people who gathered at Westminster today to appeal for urgent access to the drug which could help keep children like Archie* to keep walking for longer.
Translarna is available in other European countries, but families here are facing an agonising wait owing to administrative delays. Children must be able to walk to be eligible for the drug and there are fears many children will miss out entirely through losing their ability to walk before NHS England makes the drug available..
Archie said: “I was happy to meet the Prime Minister and to give him my letter. He was very nice and asked me about my football team.”
In response to a question from MP Dave Anderson during Prime Minister’s Questions today, Mr Cameron said:
“I will try to find time to see those parents today. I was looking at this issue last night and there was a child, who was about the same age as my son, pictured with his local football team, just as my son was. It made me think how vital it is to get these drugs through as quickly as we can. I know that there has been a debate on whether these drugs should be licensed quickly and on all the issues and problems. I will meet those parents, look at their petition and see what can be done.”
Meeting the Hill family, the Prime Minister promised to look into the issues surrounding Translarna and to speak with the Secretary of State, Jeremy Hunt MP, in order to speed up access to the drug through the NHS.
Louisa, Archie’s mum, said: “We are just so proud of Archie and absolutely thrilled the Prime Minister took the time to stop and speak with him. Archie is amazing, he has been fantastic today. Living with Duchenne muscular dystrophy is just so much for a nine-year-old to deal with. He knows that there is a medicine out there that could help him keep playing football for longer. That means everything to our little boy.
There is no one in the country in a better position to do something about these delays than David Cameron. He had seen Archie’s letter and took a genuine interest in what the problems are in getting Translarna and how he might be able to help us.
There are so many people here today showing their support for families like ours. We need Translarna now, not in six months time, now. We desperately hope the Prime Minister can help.
Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign said: “We are absolutely delighted for Archie that his wish came true today. The chance to meet the Prime Minister and ask for his help doesn’t come along every day. It means a great deal to us and our supporters that he was willing to show Archie this support.
That said, it is appalling that Archie, his parents and all these families have been put in this position in the first place. Duchenne muscular dystrophy causes irreversible muscle damage and we don’t have time to waste while a bureaucratic muddle is unravelled. We now hope Mr Cameron will take a serious look at this issue, with the urgency it deserves, to ensure all the 80 boys like Archie have fast access to this promising new treatment.”
