Hi
Deanne and Jimmy Jenkins are tireless campaigners for Tarceva on NHS in the UK. They are an amazing couple who are prepared to stand up against the big guns of the establishment and speak out for justice. Jimmy, like my Dad, has to self fund Tarceva at a cost of more than £1700 a month and seem to be getting benefits from it to give them a good quality of life (before taking Tarceva both Jimmy and my Dad were very ill). I find it outrageous that whilst having to contend with a terminal illness and the trauma that brings with it, we then have to fight for (and then pay for) medication to help treat LC (which incidentally is available in Scotland). I hope the NICE decision will be reversed in June and that guys like Jimmy and my Dad can get Tarceva without being in ruins financially (as the worrys of finances should not be dominant at a time like this).
Deanne will be going to the NICE hearing as a representative of the amazing website she runs for sufferers of LC and their fight for Tarceva - check out the boards ---
http://deannejenkyns.proboards46.com/index.cgi
Dawn