I would just like to say a big thank you to everyone who responded to our straw poll on GCA. It was really useful and we used the results in answering questions from the NICE committee about how many people stay on steroids for longer than a couple of years.
We are now waiting for the results of the second round of consultation. We had 19 patients and one carer submit their responses on the NICE website, and the committee seemed quite impressed by that. Also the BSR put in a very strong submission, as did PMRGCAuk. Discussion in committee turned on the likelihood not that people would be able to come off steroids after a year but that they would come off TCZ after a year, having got down to a low dose of steroids or in some cases come off altogether (meaning that they are in remission). Their report the first time round was very concerned that people might be on TCZ for much longer, e.g. two years or more, which would of course be extremely expensive. What might happen is that they refuse the approval but say they will review it in a short time e.g 12 months, when there is more evidence of the length of time people will be on TCZ. Or they might give approval but say that an individual patient will only be funded for TCZ for one year. We didn't get any indication in the meeting which way they would go. Witnesses and public have to leave when they do the 'real' talking.
Hope in a week or so we will be able to share the NICE verdict. Fingers crossed!