Sandra (From Essex)
Is there anyone else like me?
Been on the Xolair trial for 3 Â½ years with one small break in the middle when I was again very bad with asthma. During my time on Xolair it transformed me from struggling by from day to day into having a life worth living able to do day to day things within reason. I didnâ€™t realise how bad I was until given this opportunity to feel somewhat normal.
Now at the end of the trial and after a short extension on humanitarian grounds courtesy of the drug company, find myself basically dumped by the system and told there are no funds to carry on. Have told the hospital verbally that I will pay myself until the funding issue is resolved and still met with a negative response. After being assured that everything would be fine etc and not to worry, now I am bad again (Hospitalised constant antibiotics and doctors visits) and it is very hard to have to be like it and having to try to sort out my predicament myself. Have basically been given delaying tactics and the run-around by the system.
Well I am not going to give up I have been on various trials over the years at possible risk to myself hoping that eventually there would be something that would help me and maybe others as well.
I certainly would not have risked the trials if I could have got by reasonably well on my other medications, but only out of sheer desperation to be well, so now I have proved Xolair works big time for me I expect to get it!!
Have now formally written to the PCT the Hospital Consultant seen my MP and lined up the Solicitors to act as and when appropriate.
If there is anyone else out there in the same or similar position Please post a reply lets stop their game of divide and conquer, the system doesnâ€™t like us to know each other!