For those of us on Dasatinib as part of the Spirit 2 trial, the wording of the FAD appears to say that we should be permitted to continue on the drug after the trial ends. That is 5 years from now, and there is a further review in 2014, but even with these in the background, the uncertainty about the future is undesirable.
As the drug is free on the trial, someone will have to be prepared to pay for it at the end of the trial, and so we will have to go through a process in 2017 whereby about 250 UK patients hit the NHS for £8.75M of annual drug cost at an average £35k per patient per year. One could envisage the NHS preparing itself to be resistant to that and trying to persuade some of us to go a different way.
If the drug works for me with tolerable side-effects, there's no way as a patient that I would want to change to something else.
A useful contribution that CMLSg could provide would be lobbying for clarification that the wording will ensure future availability of Dasatinib at the end of the Spirit-2 trial for any patient who wants to keep using it.
Rod