Kidney Cancer UK represents patients at NICE nivo+ipi appraisal

On 3rd February 2022, NICE approve the use of nivolumab with ipilimumab as a first line treatment for kidney cancer. This is how Kidney Cancer UK, with patient support, helped bring this combination therapy to a wider section of kidney cancer patients.

December 2021 at N.I.C.E

On the 8^th December 2021 the National Institute for Care and Health Excellence (NICE) appraised the combination drug treatment nivolumab with ipilimumab as a first line treatment for intermediate and poor risk advanced renal cancer patients. The treatment was currently only available through the cancer drugs fund.

Meeting Date: 08^th December 2021
Location: Virtually due to Covid

nivolumab with ipilimumab for untreated metastatic renal cell carcinoma (RCC)

The Drugs

nivolumab with ipilimumab are immunotherapy drugs. Both nivolumab and ipilimumab help the body to kill cancer cells.

At the previous appraisal for the combination treatment, the recommendation was to use the drugs only within the cancer drugs fund. NICE decided that the drug combination had the potential to be cost effective but more evidence was needed to address the clinical uncertainties. Longer term follow up of patients on the trial Check mate 214 was requested to help address the uncertainties about overall survival rates and objective response rates to the treatment. At this meeting the collected data was analysed and any discrepancies were addressed in order to make a final decision.

Kidney Cancer UK regularly submit comments on NICE 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 8^th December I attended the online committee meeting as the patient expert to represent the thoughts and feelings of the patients on their kidney cancer journey. Another patient expert, Jennifer Vaughn was also there representing the patient community. It was a privilege to be a patient expert at the meeting, 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.

In 2019 I was told the cancer had returned and treatment was needed. Immunotherapy was suggested and I decided to be part of the trial for Nivolumab and Ipilimimab. What I loved about this combination was that it did not make me sick and allowed me to lead a normal life.

– Jennifer Vaughan – Patient expert at the appraisal

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.

At the beginning of the meeting we met with and introduced ourselves to the other experts. The panel who passed on judicially at the meeting were joined by Pharmaceutical company representatives, members of an evidence review group, lay people, heath economists and medical experts,  that included 2 clinical oncologists, NICE employees and Jennifer Vaughn and I who represented the voice of the patients as the patient experts. The meeting was also open to the public gallery.

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

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.

Final outcome

After 2 months of deliberating, NICE made their final decision and on Thursday the 3rd of February they announced that the combination therapy of Nivolumab and Ipilimumab has been approved to be used on the NHS! This is fantastic news and such a positive outcome for patients and brings hope to many.

Jennifer Vaughan patient expert at the appraisal said: In 2018 I was diagnosed with kidney cancer. After having a successful nephrectomy I was pleased that there was no need for treatment. However in 2019 my cancer returned and I now have multiple nodules on both lungs.
I was told I had a choice of treatments and that I could also participate in a new immunotherapy drug trial. I made my decision took part in the Ipilimimab and Nivolumab trial. I was concerned about the possible side effects at the beginning, but knew that with any cancer treatment side effects comes with the territory. My first time going to the chemo suite was not all doom and gloom as I thought it would be and the administering of the drugs was not complicated. What I liked about this combination of Ipilimimab and Nivolumab was that it allowed me to lead a normal life with minimal side effects. I was able to work and continue having a social life.
This drug is the way forward. To manage the cancer or even cure the cancer and have a good quality of life.

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.

Sophie.