I agree, doesn't make any sense. If she understands that it's only a temporary supply and she's happy to accept that, then what's the problem?
Without knowing more about the scheme it would be difficult to judge whether the drug company would be willing to hand this out indefinitely. From what I do understand it's targetted at a particular rare subset of sufferers, and putting my drug company finance hat on I'd question whether they would be willing to market it commercially for such a small population.
Taking my hat off again, I feel for her as well. Such a dreadful disease, and a waste of young lives.
Horribly inhumane decision by the trust. I wonder whether they are concerned about setting a precedent or something, but whatever, right now they should be focusing on this individual patient and her needs.
I agree with the trust - you can't accept a months worth, and then say theres no funding and it will stop. Its unethical. The drugs company should either commit to supply it free of charge indefinatly, or not at all.
Currently the drug costs over £100K a year for each patient, there are only a couple of hundred people who would benefit from it right now as it only works on a specific gating mechanism found in some CF mutations - but the drug company is also trying to go on to develop this drug further so it works for the rest of the CF community, about 8000 people in total. At the current cost he drug bill would be so huge it just wouldn't be possible to manage, it would just be too expensive and run into billions of pounds. There seems to be a stand-off/discussions between the NHS and the drug company over a viable cost. The hope is that the drug company will drop the price to something the NHS can afford and also develop the drug to the next stage where it might tranform the lives of the rest of the cf community.