It is not as simple as writing to your MP. The UK is the cheapest of the EU nationalized health care systems. You can die in the UK waiting for treatment. I am sure NICE cares about CF patients. But they look at the cost and say no. The reality is that unless the UK wants taxes to go up, somebody has got to say no.
Do you think Orkambi is available to patients in Bangladesh, a very poor country. No. They have made their choices.