Denemek ALTIN - Özgür

Great news.. but with every second that goes by, one person might not be able to walk again

Sunday Mail

|

April 20, 2025

CHILDREN with a rare form of muscular dystrophy have been promised access to a groundbreaking drug after the Sunday Mail highlighted their plight.

- BY JENNIFER HYLAND

About 30 boys could have their lives extended by givinostat, which slows progress of the killer disease.

Duchenne muscular dystrophy (DMD) patients in Scotland have not been able to get the drug - which is available in England - despite manufacturers offering it to health boards for free on an early access programme.

However NHS Greater Glasgow and Clyde has now confirmed eligible kids will be given givinostat. It comes ahead of Health Secretary Neil Gray meeting families and their lawyer Aamer Anwar on Tuesday.

They will tell the SNP minister children are in a race against time to combat the tragic muscle-wasting condition - which has a life expectancy of just 26and demand a date for the first doses.

DMD patient Michael Rankin, 12, who is desperately waiting for access to givinostat, said: "Every second they don't get this through, one person might not be able to walk again".

His mum Nicola Rankin, 38, from Haddington, East Lothian, added: "It is great news our boys can access the early access programme, but how long will we actually need to wait?

"Time is muscle, and our boys do not have time to wait. They have known for six months about the early access programme. This should now be a top priority to start ASAP.

"This is a fight we shouldn't have had to have. Scotland need to do better. The quality of our children's lives are on the line."

About 200 children in Scotland have DMD, an incurable condition affecting boys.

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