NICE decision on Belimumab

[Paul_Howard]

Here is our statement following the latest decision by NICE on the use of Belimumab in the treatment of lupus;

lupusuk.org.uk/latest-news/...

You can read more about NICE's decision on their website here;

nice.org.uk/newsroom/pressr...

[marypw]

Paul, I think this is a real shame, particularly as only the most seriously affected lupus patients, who are very few in number, would ever receive Benlysta. As the number of patients is so small, the costs would be large but not compared with the overall NHS cost. In addition, suggesting that data should be compared for rituximab and belimumab seems pretty ridiculous when rituximab isn't even licensed for lupus. Generally clinical trials use the 'gold standard' medication as a comparator. As we know there isn't such a medication for lupus, because they're all ancient or toxic or were developed for something else!!

This kind of decision is also a real disincentive to pharmaceutical companies to research and develop new innovative medicines.

The press release does say that further comments from members of the public will be considered before the final guidance is issued - perhaps Lupus UK could draft some words for patients to submit for consideration?

Best regards, Mary

[Paul_Howard Partner LUPUS UK in reply to marypw]

Hi Maxine?. LUPUS UK has made a formal appeal at every available opportunity and we will be making a final appeal as part of the consultation. Our Chair, Jane Dunnage is currently working on the appeal and we hope to circulate it before the consultation closes.

For more details on our previous appeal and the points we raised, you can read Jane's report on our website here - lupusuk.org.uk/latest-news/...

[marypw in reply to Paul_Howard]

Thank you Paul - I know how hard you all work on behalf of lupus patients. Maybe there is still some hope if lupus can be treated as a 'rare disease'?

Best regards, Mary

[Paul_Howard Partner LUPUS UK in reply to marypw]

I'm afraid I don't know. I'm not involved in the appeal myself but from what I've been told about it, the process is very strict and quite complicated.

[RichardE]

Hi Paul,

Is this the final decision from NICE or is it just the draft guidance before further consultation ?

I ask because we seem to be running into a very similar issue with the licensing of Rituximab for ANCA Vasculitis. We've had expert patients also contributing to the consultation but the draft guidance is to not recommend. NICE are asking for further information from Roche, the manufacturer. We're hoping we can pull in further evidence to support but I'm concerned that this is not going well. The NICE draft is here :

nice.org.uk/newsroom/pressr...

Regards,

Richard.

Richard Eastoe (Vasculitis UK)

[LupusKaren]

Paul thank you for posting about this. Very disappointing news indeed. I shall keep a close watch on developments. x