UK Keratoconus Self-Help and Support Association

In light of the recent posts about insurance companies and if they will or will not pay for CXL, would the KC committee be prepared to make a stance on behalf of all KC group members?

Longhoc has been very helpful and very knowledgeable on this subject but surely the KC group acting as one united body would achieve more than individual complaints? Perhaps even come up with specimen complaint letters that contain all of the relevant info so members can be confident that they are saying the right things.

If we as a group do not feel strongly enough to fight this then who else will fight for us?

many thanks

Hi Dalbeath,
I've read all the brilliant posts that our insurance 'oracle', Longhoc has written on this subject and checked with him before doing this post that I'd understood him correctly. Unfortunately the whole point is that the only way to challenge decisions by insurance companies IS on a case by case basis. The back up evidence for each individual is going to be different depending on their particular circumstances such as how quickly their KC is progressing, the surgeon's recommendation that CXL is the right course of action, in some cases arguments that CXL would prevent a future graft. Plus the fact that each policy document is different so the grounds for challenge can be different. Making a 'generic' case that doesn't relate to the specific individual circumstances would be only too easy for the insurance company to reject.
So although strength in numbers is great for some things, I don't think it would work for this.
What I will put on the agenda for our next committee meeting is whether there's any mileage in approaching NICE to see when they have plans to update their guidance (it's coming up for 2 years since it was issued and more evidence from research studies in the meantime may enable them to review their guidance) or whether there is any way they can clarify the existing guidelines to clear up what seems to be a confusion between clinical trials and audit.
Anne