NRI boy denied life-saving drug in UK

MannKirath Mann, 6, who suffers from Duchenne muscular dystrophy (DMD) is one of six children who have been denied life-saving treatment due to the high cost of the UK’s state-funded health service.

Kirath’s family from Coventry joined forces with other families to campaign and end delays to the treatment called Translarna but they failed and are devastated. The children with the condition including Kirath even wrote personal letters to PM David Cameron in a bid to get the drug that could save their lives.

The National Institute for Health and Care Excellence (NICE) decides on commissioning new drugs for the NHS and decided they needed more information on the benefits of the drug that can cost 4 million pounds per patient per year. The drug, also known as Ataluren is the first ever to tackle the causes of DMD and is available in other parts of Europe.