Scots kids with muscular dystrophy get new life-extending treatment
Families began receiving calls from doctors last week to arrange treatments for new Givinostat drug after a campaign by the Sunday Mail.
Children with a rare type of muscular dystrophy received calls from doctors last week to begin treatment with a new life extending drug after a Sunday Mail campaign. Givinostat slows the progress of the condition but Scottish health boards had until now failed to provide it despite a free early access programme.
However Health Secretary Neil Gray has now intervened and families - who had threatened legal action through their lawyer Aamer Anwar - have now been contacted to arrange first doses. There are only thought to be around 30 boys in Scotland suitable for the drug which can give extra life outside of a wheelchair to young patients.
Tragically average life expectancy is just 26 years for Duchenne Muscular Dystrophy (DMD). Mhairi Harvey, whose 7-year-old son Michael has DMD and will now have access to givinostat, said: 'It's hard to put into words how we feel about having access to givinostat.
'A rollercoaster it has been, but not a fun one that I'd like to repeat. The support we've received has been truly staggering, none more so than from Aamer Anwar and his team.
"We are in no doubt, we wouldn't have got this across the line at this stage for all eligible boys in Scotland without them. The Sunday Mail have been magnificent in keeping us in the public's hearts and minds.
'The kindness and empathy shown to us by so many has kept us buoyant when we thought we were sinking and we'll be forever grateful.'
Nicola Rankin, whose son Michael, 12, will also get the drug added: 'I cannot begin to express the depth of my gratitude for Aamer and his team.
'After an exhausting fight to secure the treatment, Michael will now start it in the summer. It was their unwavering support, determination, and expertise that finally made it possible.
"We would not have gotten this far without their help.'
Karla Millar's son Sam, 8, is also looking forward to beginning his treatment.
She said: 'As a family, we are over the moon to have finally been told that Sam will receive his medication over the summer.
'It is fantastic news for all families who have received their phone calls.'
In a letter to Gray, Anwar said: 'Progress has been made at pace within the Glasgow and Lothians region, with parents now receiving phone calls to confirm upcoming appointments to begin administering Givinostat to their children.
'The families of these boys wish to express their sincere gratitude and appreciation for your efforts in advancing this matter.
'The steps you have taken to enforce the administration of Givinostat has been critical in shifting bureaucracy to act, offering the children an opportunity to experience a better quality of life.'
However Anwar also warned that a small number of children in the Grampian area were still not being given access to the drug.
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And one parent in the NHS Grampian area said: 'To my knowledge, there are four boys in Grampian who should be eligible for the early access programme including my son.
'I am incandescent. Not only has the time scale been set back a further two months to October but the caveat of 'providing there are no unexpected resource limitations in this timeline' is wholly unacceptable.
'I can not express the level of upset this has caused us as parents.'
Emily Reuben and Alex Johnson, founders of Duchenne UK, said: 'There's something worse than having no treatment - and that's having a treatment, available to the NHS for free, but no one can work out to administer it.'
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