Dear Mr Cameron, please save life of our classmate
A GIRL of 11 with a rare condition that is usually fatal by the age of 25 has been denied funding for drugs that could extend her life by a decade.
Enola Halleron, who suffers from Morquio syndrome, has taken Vimizim for the past six years – but the free supply has been halted after the NHS medicine-rationing watchdog said it was unlikely to approve it.
Yesterday her mother Donna Halleron, 41, handed letters of support from Enola’s classmates at St Paul’s Primary School, Blackburn, to 10 Downing Street in a bid to have the NHS decision reconsidered.
She joined families of children with other ultra-rare conditions protesting outside the Houses of Parliament over funding of treatment. Enola’s mother believes the drug could boost her daughter’s life expectancy by ten years. ‘They are shortening my daughter’s life expectancy,’ she said. ‘This is the only treatment, there is nothing else.
‘Even if we get it back in three or four months there could be serious consequences.’ Enola, who is 2ft, has grown just two inches since the age of five.
She was diagnosed when she was two years old after doctors noticed an abnormality with her hips and now often feels too tired to walk, and symptoms can include heart disease, skeletal abnormalities, vision and hearing loss, and difficulty breathing.
Weekly four-hour courses of Vimizim are said to stop harmful chemicals building up. Vimizim was licensed in the UK last April and is already supplied to European countries including Germany and France. But last month, after a series of delays, the National Institute for Health and Care Excellence released draft guidance saying the £395,000-a-year cost per patient could not be justified. US manufacturer BioMarin then withdrew the free supply for Enola, of Blackburn – despite the NHS saying it had an ‘ethical duty’ to provide the drug until a final decision is made later this year.
Blackburn MP Kate Hollern, who is backing her campaign, called the delay a ‘death sentence’.