Campaigners hail Nicola Sturgeon promise over Duchene drug

Campaigners for children suffering from a muscle- wasting disease last night welcomed a commitment by Nicola Sturgeon to look at a controversial decision to deny Scottish patients a drug to treat the condition.

DMD patient Michael Young with the petition. Picture: Stewart Attwood/Warren Media

Sturgeon has agreed to meet campaigners who want the Scottish Medicines Consortium (SMC) to reverse its decision to deny children with Duchene Muscular Dystrophy (DMD) the new drug Translarna.

Her attention has been drawn to a petition started by nine-year-old DMD patient Michael Young calling for the drug to be licensed in Scotland.

The petition has received 50,000 signatures.

The meeting has been secured by Jim Eadie, SNP candidate for Edinburgh Southern, who said: “There has been widespread concern among families affected by Duchene that boys in Scotland could be denied this life- enhancing treatment once the clinical trial ends.

“This is in stark contrast to children south of the Border who will continue to receive the medicine following a positive decision by the National Institute for Clinical Excellence (NICE).

“These boys and their families should not be facing an uncertain future.”

Paul Lenihan, Action Duchenne’s chief executive officer, said: “I am delighted by the extremely positive reaction by Mr Eadie and Nicola Sturgeon and I look forward to taking this issue forward under their direction if both are re-elected on May 5.

“The families in Scotland deserve a better service than that currently given by the SMC, especially given that five days after the rejection of Translarna, NICE gave its approval for the drug to be funded in England.”