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Kidney Cancer UK News

Request for Patient Experts

Kidney Cancer UK sends in comment each time new drugs are appraised by the National Institute for Health and Care Excellence (NICE). In the hope that by representing the patient more drugs will be recommended and available on the NHS.

We think it is even more powerful if the patients who want to represent their views and experiences to NICE have the opportunity. NICE agree with policy and it is possible for patients to represent themselves at NICE meetings as patient experts. Alternatively patients can give us information to quote; a patient could submit a written account of what they thought of the drug (side effects, effectiveness, quality of life).

Currently there is an opportunity for people who have been taking the drugs Lenvatinib or Tivozanib to act as patient experts at the NICE meeting in London. Please see the request from NICE below. Please get in touch if you would like to attend this meeting as an expert. Or alternatively, if you would like to write your thoughts and feelings down for us, we may be able to represent you at the meeting.

“NICE is apprising two renal cell carcinoma technologies next month:

  1. Lenvatinib (with everolimus) [ID1029]
  2. Tivozanib [ID591]

I would like to firstly thank you very much for your organisations submissions for both of these and to secondly see whether you are able to nominate any patient experts to attend these committee meetings?

The technologies will be discussed at committee on 19th July in London. Do please let me know if you will be nominating any patient experts to attend. NICE will cover travel and required accommodation costs (in-line with our policy) and can also offer a £75 honorarium to experts.”

Please get in touch if you would like to attend or contribute to this meeting and/or have taken either of these drugs during the clinical trial stage and would like to let us know how you got on.

There will be many more opportunities for people to attend NICE meetings in the future, we will be asking for patient accounts and patient experts for future appraisals when they are scheduled.

Thank you for your help and I hope that the outcome of these appraisals are successful.