UK: PIO boy denied life-saving drug

Six children, including a 6-year-old Indian-origin boy, have been denied life-saving treatment from a rare disease due to high costs by UK’s state-funded health service.

Kirath Mann suffers from Duchenne muscular dystrophy (DMD), which affects one in 3,500 boys in Britain and leaves many in a wheelchair before their 10th birthday.

His family, from Coventry in the West Midlands region of England, joined forces with other families to campaign to end delays to a breakthrough treatment called Translarna but failed due to high expenses involved.

“We are devastated at having to face yet more disappointment after another hurdle has been put in our way.

“All these organisations and National Health Service (NHS) bodies that have been involved in the decision do not seem to be appreciative that this is a rare disease and very progressive one as well,” Kirath’s mother Jaspal told ‘The Coventry Telegraph’.

Kirath and five other boys with the condition even wrote personal letters to British Prime Minister David Cameron in June in a bid to get the drug that could save their lives.

“Hello Prime Minister, my name is Kirath. I am six years old. My legs are poorly. Please help me get the medicine I need,” read the letter in his childish scrawl.