Steve Brine MP

for Winchester & Chandler's Ford

14 JAN 2015

Local MP backs Duchenne treatment campaign

Winchester & Chandler's Ford MP Steve Brine has joined the fight for urgent access to a new rare disease treatment.

The campaign calls on NHS England to end delays to a breakthrough treatment which will allow some boys affected by a devastating muscle-wasting condition to stay on their feet for longer.

On Wednesday 14th January, Steve Brine joined fellow MPs and families as they were calling for fast access to a new pioneering drug for Duchenne muscular dystrophy. The condition causes irreversible muscle damage, with many boys needing a wheelchair by the time they are eight or nine years old. Problems with heart and lung muscles mean that few with the condition currently live to see their 30th birthday.

Translarna, the first drug of its kind in the UK, will allow some boys living with Duchenne muscular dystrophy, to stay on their feet for longer. Translarna has been designed for 10-15 percent of the 2,500 children and adults in the UK who have Duchenne muscular dystrophy caused by a 'nonsense' or 'stop' mutation. Countries including Spain, Germany, Italy and Denmark already have access to Translarna, but NHS administrative issues have led to agonising delays for families in the UK.

To be eligible for the treatment, Translarna, these boys must still be able to walk. Each day this treatment is delayed results in a greater risk that they could miss out on the drug entirely.

Steve Brine MP said: "A bureaucratic internal debate is currently preventing licensing of the drug Translarna, which can give these boys precious extra time on their feet.

"NHS England urgently needs to come up with a short-term solution as families affected by Duchenne muscular dystrophy do not have a single day to spare as their sons get weaker each day."

Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, said:

"We greatly appreciate Steve Brine's support on this issue. Translarna is a long-awaited breakthrough. We must see an end to the delays in this drug reaching children who desperately need it.

"NHS administrative delays cannot lead to a situation in which even one child becomes ineligible for a drug that could have made a profound difference to their life, or even their future. We and families affected by Duchenne muscular dystrophy will be demanding action on Wednesday, for the many children who cannot afford to wait."

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