After 8 injections in my left eye and 4 in my right for pathological myopia, my right eye was actually worse after my Lucentis injection a fortnight ago, although thankfully, my left eye has responded well. They're going to try another Lucentis in my right eye to see what happens, but I talk to lots of people in clinic and know that if Lucentis stops working in AMD, most switch to Eylea with good results. Naturally I asked if I would switch drugs if there was no improvement after the next injection and was shocked and horrified to learn that although Eylea is licensed for use throughout the UK for myopic CNV, it is denied to those of us in England but is routinely used in both Scotland and Wales where it is fully funded.
I was also told that, although I'm of working age and only have one fully functional eye which I rely on to work and to drive, the vision in that eye hadn't deteriorated sufficiently to be allowed funding for Eylea even if I needed it in the future. In other words I'm expected to become partially sighted when a perfectly good treatment already exists which could prevent sight loss.
I know that if this becomes necessary then long-winded applications for funding can be requested by my consultant but, let's face it, in that situation I'm not likely to have a lot of time to spare before my vision becomes permanently, and unnecessarily damaged.
I would like to campaign to rectify this appalling situation where English people are being discriminated against and if there was a referendum right now to ask if I wanted to opt out of being English and choose to be part of a united Scotland then I would. I simply don't know where to start with this, but is there anybody out there who has experience of this? I know I don't need to switch from Lucentis yet, but I can't be the only person affected by this and feel I can't simply accept this dreadful and unfair situation and hope someone can guide me with what to do next.
Thanks for listening x