How we work with N.I.C.E

How Kidney Cancer UK works with N.I.C.E to bring new drugs treatments to patients

Author; Lucy Willingale Bsc (Hons) Oncology and Radiotherapy (HCPC registered)
Kidney Cancer UK Health Professional – Team Lead
 
 
Kidney Cancer UK’s focus is the patient and working to bring effective and a wider choice of drugs and treatments to tackle the disease at all levels. As such, we work very closely with N.I.C.E (National Institute for Health and Care Excellence) and the pharmaceutical industry to bring these goals to fruition for patients.
Kidney Cancer UK regularly connects with N.I.C.E with comments and recommendations which present the views of kidney cancer patients, carers and their families. We work with N.I.C.E as an advocate for our patients and their loved ones and through Kidney Cancer UK your voices are heard. We gain our information by talking directly to those that have been on the drug or treatments being appraised. We also use the findings from our annual survey to collaborate in our submissions. We have sat on many committee meetings as the patient expert representing the kidney cancer community. We work with the committees so there can be as many effective drug options as possible available for patients. However, we are aware that the tolerability of drugs is very important and so Quality of Life (QoL) – how a treatment is affecting your life, not just the effect on your cancer – is always a consideration when we represent. It is vital that these new drugs bring a benefit and move the treatment process on and where possible show less harmful side effects. The novel way forward now is in combination therapies, looking at drugs currently in the markets place and trialing them to see what happens when one is combined with another. As well as single line therapies coming to the market, the new combination therapies are seeing strong results, giving those living with kidney cancer hope and a best chance of survival with QoL.
There was a trial called checkmate214, this was for patients with advanced RCC (Renal Cell Carcinoma) which compared nivolumab and ipilimumab with a standard treatment called sunitinib, a TKI (Tyrosine kinase inhibitor) drug. Nivolumab and ipilimumab are both types of targeted drugs called immunotherapy. Immunotherapy works in a slightly different way to TKI, it uses a method to treat cancer using man-made copies of substances found naturally in the body which stimulate the body’s own immune system to attack the cancer cells.
After spending many hours studying the ‘checkmate 214’ findings and talking to patients about their first-hand experiences of this combination therapy, we submitted our first submission to the N.I.C.E appraisal board. This was in March 2018 and on 10^th May 2018, attended the appraisal meeting at N.I.C.E as the expert representing patients on their kidney cancer journey. I was privileged to do this and to be able to share the importance of increasing the availability of first-line drugs for RCC patients through the NHS with the committee. In August of the same year, the process was unfortunately suspended because the European Medicines Agency’s Committee for Medicinal
 
Products for Human Use (CHMP) had considered the use of nivolumab with ipilimumab (intended for the treatment of untreated metastatic renal cell carcinoma) as a negative result. Fortunately, after some excellent work from the drug company, the suspension came to the end and the appraisal continued. We resubmitted to the appraisal committee the important findings from the study and our patients’ experiences through Kidney Cancer UK, along with many oncologists.
On the 5^th April 2019 our appeal to get the combination of nivolumab and ipilimumab approved was successful and now the treatment is available on the NHS through the Cancer Drug Fund (CDF) in England.
Over the last 3 years there have been huge advances in drugs available for kidney cancer patients. Kidney Cancer UK have made representations for first line drug treatments including cabozantinib and tivozanib, and second line drugs lenvatinib with, cabozantinib, nivolumab and this newest drug combination nivolumab and ipilimumab.
Kidney Cancer UK will continue to work closely with N.I.C.E and submit appraisals for new drugs and combination therapies, working tirelessly to get these approved and available through the NHS as quickly as possible, working for the patient and the entire kidney cancer community at all times.
Our relationship cuts both ways as one of our Health Professional team has been given a bursary to attend the ‘NICE 2019: Transforming Care’ conference in Manchester where she will attend seminars titled; ‘Reliable evidence?: The roles of real-world data, patient evidence and randomised trials in judging treatment effectiveness’, ‘Too much medicine? Getting the balance right’ and ‘Bringing genomics to the clinical front-line’ and ‘Faster to Market’. We will write a further blog update you on how this conference goes.
We are also looking forward to welcoming a representative from N.I.C.E who will be speaking about the importance of the patient’s voice and patient engagement at our Living with Kidney Cancer Day in Ashford, Kent on the 20^th June 2019. Please join us if you can.
Last but not least, we would like to say a huge thank you to everyone that took part in our annual survey, gets involved in on our closed ‘Facebook support group’ page and for allowing us to hear your stories so we can act as your advocate to bring more effective, life prolonging and lifesaving drugs, and treatments to people living with kidney cancer.
As a follow up to this post we will be providing a blog about our work in Scotland with the SMC (Scottish Medical Consortium).