Family ‘gutted’ by treatment delay
No decision on muscular dystrophy drugs until 2016 but fight goes on
A FAMILY has been left frustrated after NHS England chiefs postponed the decision to fund a breakthrough drug for Duchenne muscular dystrophy.
Nine-year-old Archie Hill, from Gerrards Cross, will now wait for a decision to be made by the National Institute of Health and Care Excellence (NICE) with no answer expected until next year.
Mum Louisa Hill said: “He is an amazing kid and just said ‘ mummy, I’m sad because you’re sad’.
“We are absolutely gutted, we have worked continually hard and fought mentally too in the last nine months and we were speechless when we found out. It’s all very raw at the moment but my community has been so amazing and we’ve been inundated with messages.”
Families have been waiting since last summer for a decision from NHS England on whether it will fund the drug.
Robert Meadowcroft, chief executive of Muscular Dystrophy UK said: “While boys in many EU countries have access to this treatment, boys here are now denied access to the only available treatment after months of being kept in suspense.
“Translarna could give boys precious extra time walking for longer. Some boys are now at high risk of losing the ability to walk before NICE’s assessment. Our focus now is to support parents affected by this decision through the waiting period, and to explore all alternatives.”
The charity was due to meet NHS England yesterday (Tuesday).
Chairman of the all-party parliamentary group for muscular dystrophy, MP David Anderson said: “We have failed these boys and their families unforgivably. Translarna is an example of why this area urgently needs refining in England and Wales.”
Mrs Hill added: “I would say to all those families fighting, don’t give up because we will make a difference.
“Don’t be disheartened and don’t let them win. We do it for Archie and all the boys who are eligible for Translarna.”
LONG WAIT: Archie Hill will have to wait until next year to learn if he can have access to Duchenne muscular dystrophy breakthrough drug Translarna on the NHS