NICE deadline re: new immunotherapy drug

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The deadline is Tuesday 26th July for further submissions to NICE regarding the licensing and funding of Nivolumab. This new immunotherapy PD-1 type drug is so important to all kidney cancer patients everywhere.

We are still hoping for some positive scan results for Jon in time to add to our appeal but, even not knowing the answer to the three monthly ‘scanxiety’ question we know Opdivo needs to be urgently prescribed to patients. The facts are simple – it works for many people and the drug is so well tolerated and improves the quality of life so much that it is absolutley vital for approval to be granted and NICE to reconsider their initial decision.

Nivolumab is an innovative therapy with many patients worldwide achieving excellent results.There are recent updated reports to the American Society of Clinical Oncology which showed that a third of patients were alive five years after treatment initiation on Nivolumab and we believe that this data should be included and investigated by NICE when making comparisons to other drugs. Sadly it is not a cure, but it can significantly extend the lives of Stage 4 cancer patients. Stage 4 means that the cancer has spread from the initial tumour and it is now a terminal illness.

There are so many aspects of Jon’s life and the lives of our family and friends which are touched by his incurable diagnosis of kidney cancer and although Jon was lucky to be able to access Nivolumab, three months ago, under the Early Access to Medicine Scheme (EAMs), there are many others desperately waiting for it to be approved, and their options are fast running out. They too have families and jobs and they cling to this glimmer of hope that these new immunotherapy drugs bring as tightly as a limpet sticks to a rock on a fast running tide.

Not being able to access new drugs means the UK lags behind the rest of the world for renal cell carcinoma cancer care. Having a terminal illness frequently causes serious bouts of depression to the patient and their family, and access to Nivolumab would help them to cope better by knowing that all reasonable steps had been taken either for their own or their family member’s survival. Knowing that everything which can be done has been done is truly a small crumb of comfort when dealing with grave illness.

The current available crop of drugs for kidney cancer (i.e.: Sutent, Axinitib and Pazoponib) are similar to each other in their mode of action and their copious unpleasant side effects, and this new immunotherapy offers real hope for a response in patients who haven’t had success on other drugs. Jon’s quality of life on Nivolumab seems to be much better in terms of the side effect profile of many of the other drugs currently prescribed for kidney cancer. Chemotherapy does not work on kidney cancer and it is a notoriously difficult disease to treat. He has not yet had any of the TKI type drugs but despite travelling the long way to London for treatment every two weeks, and suffering a few minor side effects such a fatigue, itchy skin and headaches, Jon remains able to work full time which not only contributes to the Treasury but also to his feeling of identity, and self efficacy. These are two huge plus points, and add so much to a Stage 4 cancer patient’s life, and that of their family.

Jon’s only other treatment was High Dose Interleukin 2, and this is administered in a specialised hospital setting and it is very dangerous. Jon became seriously ill with jaundice and took almost a year to recover from that treatment, and although it hadn’t worked at the time he knew he’d tried everything he could and this gave him and Sarah some peace of mind.

We accept that Nivolumab is still a new drug and we know further data is still being collected on its overall impact on survival, which is partly why EAMs was made available. Approx. 200 patients are on the EAMs scheme and we feel it is vital that NHS kidney cancer patients in England will be able to benefit from this Immunotherapy treatment immediately and that more data is collected to reinforce its efficacy. Jon was patient witness and he told the NICE panel: “Let’s get Nivolumab out there are see what it can do”, and this will only happen with NICE approval. ‪#‎Nivolumab‬ ‪#‎kidneycancer‬ ‪#‎Opdivo‬ ‪#‎NICE‬ ‪#‎NHS‬ ‪#‎EAMs‬ ‪#‎share‬ ‪#‎support‬

Here is today’s Express newspaper article: Cancer experts write to government to demand life saving drug be used on NHS CANCER specialists from around the UK have written to the Government’s health watchdog to demand a potentially life-saving cancer drug is made available to… EXPRESS.CO.UK  BY LUCY JOHNSTON