Tiny Tim wasn’t the only orphan to suffer a miserable Christmas at the hands of a merciless Scrooge. The same fate awaits so-called orphan disease patients in the UK. This year, it’s the turn of around 400 cystic fibrosis patients, who cannot access newly-approved Kalydeco on the supposedly comprehensive National Health Service (NHS).
Its easy to imagine the sadness of children from poor families pressing their nose against the glass of the toy shop window decked out with dazzling presents for Christmas, knowing these delights will be denied them but not their school friends. How much worse must it be knowing there is a drug that could dramatically reverse your chronic illness, but being told you cannot have any?
Yet that is exactly what is happening, not for the poor children on the block but in the world’s seventh largest economy.
On the face of it, the cause of this wholly unacceptable state of affairs is the ‘scandal’ of drug pricing. Vertex, makers of Kalydeco, want $294,000 for a year’s treatment.
“Can it be right for the NHS to offer free IVF to infertile couples while denying Kalydeco to CF sufferers?” @sciencescanner on Twitter
But actually, the ultimate cause is the myth we (in the UK) continue to perpetuate that its possible to offer comprehensive healthcare to all, free at the point of use. While the development of new drugs is funded almost entirely with private capital, yet healthcare is delivered from the public purse there will always be a mismatch – with companies developing drugs no-one can afford to use.
What is urgently needed is a proper debate about healthcare priorities – a debate that is stifled by the increasingly hollow assertion that the state can cover all your healthcare needs.