Council wasters
A NeAR-bankrupt council hires a private box to watch rugby and spends money on flights (Mail). Other town halls pay out huge sums for top-of-the range cars. Is there no accountability when it’s the public who are stumping up the cash?
JOHN NEWMAN, Ashington, Northumberland.
THE recommendation that a life-saving treatment should not be available on the NHS will put thousands of lives — including mine — in jeopardy. I have the lifelong condition spinal muscular atrophy, the number one genetic killer in infants. Parents are told their child will eventually lose all muscle function, which will lead to their early death. I am confined to a wheelchair, all of my muscles are weak, so I have little strength or movement in my limbs. The condition also affects my respiratory system, so I have to wear an overnight ventilator and can become very ill with chest infections. Despite my condition, I am at university in Winchester and try to lead as normal a life as possible. You can imagine how I felt when I heard about a drug, Spinraza, that significantly alters the course of this condition. Youngsters with the most severe type, who would ordinarily die in early childhood and never walk, crawl or sit up, are sitting, standing and even walking thanks to this treatment. The drug has gone through extensive clinical trials, all of which proved so successful they were stopped early because it was deemed unfair to those receiving the placebo drug when the other patients were improving so dramatically. This drug can be called nothing less than a miracle. When I was diagnosed, my parents were told there would not be any form of treatment for the condition in their lifetime, but now there is. But last week, the National Institute for Health and Care Excellence (NICE) recommended that Spinraza should not be prescribed on the NHS purely because of its price. This is unacceptable when sufferers are getting weaker by the day and children are dying from this disease. The drug is available in the U.S. and 22 countries in Europe. People like me have been given so much hope, but that has been taken away. I call on NICE to rethink and allow sufferers of spinal muscular atrophy to have this life-changing medication.