Kidney Cancer UK represents patients at NICE appraisals

On the 10^th May 2018 the National Institute for Care and Health Excellence (NICE) appraised two different drug treatments in two meetings. The first for nivolumab with ipilimumab combination, and the second for cabozantinib as first line drugs for intermediate and poor risk advanced renal cancer patients.

By:Lucy Willingale;
(BSc (Hons) Oncology and Radiotherapy (HCPC registered))
Kidney Cancer UK Health Professional – Lead.
Meeting Date: 10^th May 2018
Location: National Institute for Care and Health Excellence (NICE), London.
Meeting 1:   nivolumab with ipilimumab for untreated metastatic renal cell carcinoma (RCC)
Meeting 2:   cabozantinib for untreated metastatic renal cell carcinoma (RCC)
The Drugs
nivolumab with ipilimumab are immunotherapy drugs. Both nivolumab and ipilimumab help the body’s immune system to kill cancer cells.

cabozantinib is a type of targeted therapy drug called a Tyrosine Kinase Inhibitor (TKI). It works by blocking the signals inside cancer cells that cause them grow and divide. This may help stop or slow down the growth of the cancer.
Both are first line treatments for patients with untreated metastatic renal cell carcinoma and have been in trails programmes and NICE pass recommendations on whether new cancer drugs and technologies should be made available on the NHS following these appropriate clinical trials. The recommendations from NICE following these two separate appraisals will be made public in the coming few months.
Kidney Cancer UK regularly submit comments on the appraisals and is there to represent the views of kidney cancer patients and their loved ones. We fight for there to be as many drug options as possible available for people with kidney cancer, however, we are aware that the tolerability of drugs is very important and so quality of life is always a consideration when we represent.
On 10^th May 2018 I attended the meeting as the patient expert to represent the thoughts and feelings of the patients on their kidney cancer journey. It was a privilege to be the patient expert at both meetings, where I was able to share with the committee the importance of increasing the availability of first line drugs for RCC patients through the NHS.   If anyone would ever like to act as a patient expert or to attend the meeting to observe, please let us know and I Can discuss it with you as it is the patients voice that matters.
The two sessions, each started with the attendees introducing themselves. The panel who passed on judicially at the meeting were joined by Pharmaceutical company representatives, members of an evidence review group, heath economists and medical experts that included a clinical oncologist Philip Savage in the afternoon meeting, NICE employees and I was the voice of those who need these new treatments so badly as the Patient Expert.
Clinical trial data evaluated
A majority of the meeting was taken up by the evaluation of available clinical trial data along with the statistical models used and comparing the effectiveness of the drugs evaluated to the drugs currently available through the NHS.
The outcome of the appraisals

We are expecting NICE to share their recommendations on the use of these drugs for first line treatment in the next few months. It is worth noting that individually nivolumab and cabozantinib are recommended for use in second-line kidney cancer only through the NHS, and ipilimumab is not recommended for individual use by NICE in the UK for kidney cancer, as of the date of this blog. I was encouraged to see, and experience how well organised the appraisal meeting was. All aspects of the appraisal were given time to be heard and understood, including the voice of the patient, and the thoughts and opinions of the medical experts were listened to in depth. Once the recommendation is made public we will make you aware through our website and social media platforms.
I hope you found this insight into the NICE appraisal system helpful and if you would like to be a part of it and attend an appraisal in the future please let us know. You can get involved as spectator or speak and give your opinions as a patient expert.
We would like to hear about your experiences of living with kidney cancer through writing a blog or making a video with us about your journey. If you would like to know more on how to get involved, please Email Us Here and we will get back to you.
Good health.
Lucy.