Registered: Jun 2008
Location: oxfordshire
Posts: 26

re-appraising other 3 KC drugs at NICE
Hi

I notice that NICE are reappraising the other 3 KC drugs that were turned down, (Avastin, Nexavar, Torisel), tomorrow (Monday 13th). I would like to know if anyone from KCUK will be representing the many patients and making a strong, positive statement in favour of these.

On your home page it states that you will continue lobbying for these drugs.

"KCUK will continue to campaign on behalf of the three drugs not being recommended for NHS funding"

I do hope this is the case!

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Registered: Jun 2008
Location: oxfordshire
Posts: 26

As no-one from KCUK has replied, I can only assume that you did not represent the many KC patients who do not respond to Sutent or it has stopped working for them. I would be interested to know what KCUK is actually doing in representing patients who have no other options left. As i said before, you do say that you will continue to fight for all the KC drugs but I see no evidence of this on your site. Please prove me wrong!!!!

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Registered: Mar 2004
Location: North West
Posts: 32

I would like to add that KCUC has a Trustee that is dedicated to the Campaign issues regarding appraisal and licensing of drugs. He is himself a kidney cancer patient, so personally understands the importance of this issue and is extremely pro-active with regard to his role for KCUK.

In direct answer to your question, yes, KCUK is working on this matter.

Joan
Chairperson and Trustee of KCUK

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Registered: Jun 2008
Location: oxfordshire
Posts: 26

Thank you Joan for your reply. it may be of interest though if KCUK could post what representation was made and in what context, I am sure there are a lot of patients out there who would be very inyerested.

Many thanks for your help and co-operation.

jimjam

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