Mum joining campaign march for daughter’s right to drug
A mother and daughter from Dudley are joining a national march against the lack of treatment for a rare muscular disease.
Hannah McKeown and her daughter Tiegan, from Gornal, are joining a protest in Manchester on Wednesday over the lack of treatment options for spinal muscular atrophy (SMA).
SMA is commonly known as the biggest genetic killer of babies and infants, is a progressive disease of motor neurons that causes the early death of nearly 50 UK children a year and leaves hundreds more progressively losing muscle function, resulting in permanent paralysis.
The National Institute of Health and Care Excellence (NICE) advised that nusinersen, which is marketed as Spinraza, should not be made available through the NHS, despite it being the only effective drug to combat SMA.
The drug was aproved in December 2016 in the USA and in the European Union in May 2017.
