Charity backs calls for Scottish Government to urgently deliver groundbreaking drug for kids
After a Sunday Mail campaign, NHSGGC confirmed eligible kids should be given givinostat before the end of May, however those in other health board areas could wait months.
The head of Britain's biggest muscular dystrophy charity has backed calls for the Scottish Government to urgently deliver new life-extending drugs to children.
About 30 boys could have their lives extended by Givinostat, which slows progress of Duchenne muscular dystrophy (DMD), a rare form of the killer disease.
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.
After a Sunday Mail campaign, NHS Greater Glasgow and Clyde has confirmed eligible kids should be given Givinostat before the end of May, however kids in other health board areas could have to wait months.
Health Secretary Neil Gray met families and their lawyer Aamer Anwar two weeks ago to discuss access to the drug but they say there has been no progress since.
In a letter to Gray, Anwar said: 'With every day that passes, the anxiety felt by parents continues to grow due to the uncertainty and panic at their children's declining health and mobility.
'You will be aware at our meeting you made a promise to the families to accelerate matters and would do everything possible to assist these families, yet they have been told nothing.
'The family… believed you would not break the promise you made to their boys.'
Andy Fletcher, is the chief executive of Muscular Dystrophy UK, which works with more than 110,000 people in the UK living with one of over 60 muscle wasting and weakening conditions.
He said: 'People with muscle wasting conditions, like Duchenne muscular dystrophy, don't have time to waste. Accessing treatments as early as possible can make a significant difference in their quality of life.
"The recent meeting between Neil Gray, Cabinet Secretary for Health and Social Care, and families campaigning for access was welcomed.
'However, a postcode lottery is not acceptable and action must be taken now.'
Families are in a race against time to slow symptoms of the condition which has a life expectancy of just 26 and sees patients lose their mobility until they can't even breathe.
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DMD patient Michael Rankin, 12, 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.'
About 200 children in Scotland have DMD, an incurable condition affecting boys. There are thought to be less than 30 children suitable for the givinostat early access scheme in Scotland.
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