Last year more than 1,000 letters were delivered to Downing Street, begging the government to allow free access to a revolutionary cystic fibrosis drug, Orkambi.
Three quarters of these pleas for help were from children, just some of the 10,000 cystic fibrosis sufferers in the UK. A year on, nothing has changed.
Despite The Cystic Fibrosis Trust saying that it improves lung health by up to 42%, the NHS and NICE (National Institute for Health Care and Excellence, the body which decides which drugs offer ‘value for money’) are no closer to obtaining this vital drug.
Shockingly, Orkambi has been licenced for use in the UK since 2015, yet sufferers, including those in Bury, are still waiting.
This is because NICE does not consider Orkambi to be cost effective.
Pharmaceutical firm Vertex has begrudgingly allowed a small number of the very worst afflicted to have the drug on ‘compassionate grounds’.
However, it does not appear that their compassion extends to negotiating on the £105,000 per patient per year price of the drug.
Nor does it seem that NICE has put much effort into negotiation given the 4 years and counting wait that sufferers have had to endure.
That discussions of life changing drugs are couched in terms of ‘cost effectiveness’ and ‘negotiation’ is symbolic of a system that has lost sight of it’s first responsibility – to patients and their distressed families.
Children in Bury and across the UK are having their quality of life taken away from them because the government and big business are haggling for every penny.
This is dreadful beyond words for them, and shameful for all of us who think that the NHS should be able to provide the best and most modern effective treatments. We should never put a price on a child’s health.