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Issue 1 - March 2019

Hello and welcome to the KCSN newsletter

Welcome to our first newsletter for 2019. This year has got off to a good start, and we have been busy working with NICE, the Scottish Medicines Consortium (SMC) and pharmaceutical companies to ensure access to the latest treatments for kidney cancer. We hope you enjoy hearing about the work we do to help support our community, and if you have any suggestions for our newsletter or would like to write an article, we would love to hear from you, so please get in touch.

Support when you need it

We pride ourselves on being the only patient-led support group for the kidney cancer community in the UK, and have always had fantastic feedback about the practical support and advocacy we provide to patients and their families. Dealing with a diagnosis of cancer is always difficult: If you are struggling, please remember that as part of the KCSN community you can always find someone to talk to who really understands what you are going through:
  • Our Facebook groups are available 24 hours a day, 7 days a week, and are managed by the patients and carers themselves. We have over 1,000 members active at all times of day and night in our groups; this is a very special community who truly understand what it is like living with the emotional and physical effects of kidney cancer. We have two main Facebook groups; our public group is open to everyone and is updated with the latest kidney cancer news and research. Our closed Facebook group is a private group where patients and their families can share experiences and find support.
  • If you prefer to talk confidentially to one of our patient experts, please ring our helpline on 01209 890326 between the hours of 10 am and 4 pm weekdays.
For more information about the KCSN support groups on Facebook, please visit KCSN on Facebook.

KCSN Chair of Trustees invited to speak at KCA International Conference


The Chair of the KCSN Trustees, Andy Thomas, was invited to give a presentation at the 14th European International Kidney Cancer Symposium organised by the American Kidney Cancer Association in Dubrovnik, Croatia the weekend before last. Andy spoke about the role of cytoreductive nephrectomy from a patient's perspective, and was in good company with kidney cancer experts from all over the world. This is a fantastic accolade, since KCSN were the only kidney cancer patient organisation from Europe invited to speak at this prestigious international conference.

KCSN at the IKCC Global Kidney Cancer Summit 2019 for patient groups

   ARTIS - Uli Deck

Rose, Julia and Sharon attended the International Kidney Cancer Coalition (IKCC) Global Kidney Cancer Summit 2019 in Lisbon last week to represent the views of UK kidney cancer patients. Julia was also part of the IKCC organising committee. This 9th global summit brought together over 50 kidney cancer patient advocates from 25 countries and 6 continents to hear the latest information regarding the diagnosis, treatment and management of kidney cancer. The conference also enabled patient organisations to share best practices, exchange experiences, and work together to reduce the global burden of kidney cancer.

KCSN are founding members of the IKCC and Rose Woodward has been a serving board member since the organisation was started over 10 years ago. At this year's conference, Rose led one of the main sessions on immunotherapy, together with guest speakers Dr Lewis Au from the Royal Marsden and Robin Martinez from Smart Patients in the USA.

A very big THANK YOU to all our fundraisers!

We would like to say a very big THANK YOU to everyone who has supported KCSN with fundraising recently: Thank you for all your efforts! For those who donate regularly each month, those who raise funds in lieu of birthday and anniversary gifts, and those who have kindly donated funds in memory of a loved one - your support is very much appreciated!
 
We are grateful to the following fundraisers:

Thank you to everyone who has set up a fundraiser in lieu of birthdays and anniversaries using the Facebook donate button (see below). Such as Simon Thompson, who used the donate button to raise funds in celebration of his 60th birthday! 

How to support us!

KCSN do not receive any funds from the government or NHS for the work we do. We rely on fundraising and donations from the public to enable us to provide much needed support to our community. Our Support Us page on the website highlights a few easy ways you can donate to the KCSN:

If you would like further information about these easy ways to support us, or you would like to organise or be involved in a KCSN fundraising event, please get in touch with us. See Support Us on our website for more information.

KCSN is registered with the Fundraising Regulator and abides by the Code of Fundraising Practice, which outlines the standards expected of all charitable fundraising organisations across the UK. 

KCSN members getting involved

Sharon Kell went along to the Cancer52 All Members Meeting on 23rd January to learn about the new Voluntary Pricing and Access Scheme (VPAS) and the NHS Long Term Plan, 2020-2030. 

The new Voluntary Pricing and Access Scheme (VPAS) is an agreement between the Department of Health and the Association of British Pharmaceutical Industries (ABPI) on getting the best value and most effective medicines into use by the NHS more quickly. The scheme replaces the old Pharmaceutical Price Regulation Scheme (PPRS), and sets the prices of branded medicines paid by the NHS. The VPAS came into effect in January.

The NHS England Long Term Plan was published on 7 January 2019. In reference to cancer services, the aim of the Long Term Plan is an extra 55,000 people each year surviving cancer for at least 5 years, and three in four cancers (75%) diagnosed at stage 1 or 2. The Long Term Plan focuses on prevention of cancer (smoking, alcohol consumption, obesity), screening, and fast access to diagnostic tests (rapid diagnostic centres and 28-day faster diagnosis standard).

Click here to read about the Cancer52 All Members Meeting

KCSN is a member of the Association of the British Pharmaceutical Industry (ABPI) Patient Organisation Forum. The ABPI aims to encourage the collaboration of the pharmaceutical industry and charities and to ensure that the patient is at the heart of their work to deliver medicines that have the most impact on people’s health and wellbeing. Sharon Kell attended a recent meeting, where the main topics of discussion were the potential impact of Brexit, in particular the supply chain for medicines, and the Voluntary Pricing and Access Scheme (VPAS) for branded medicines.

Click here to read about the ABPI Patient Organisation Forum

STOP PRESS!

After a successful appeal to the European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP) to grant marketing authorisation for the nivolumab plus ipilimumab combination for untreated metastatic renal cell carcinoma (RCC), the treatment has finally been reviewed by NICE and is available via the Cancer Drugs Fund with immediate effect.

We would like to thank KCSN member, Alison Fielding, for representing the views of the UK kidney cancer community at the EMA appeal meeting last November. Alison was the only kidney cancer patient at the meeting, and was instrumental in the successful appeal for the nivolumab plus ipilimumab product license. 

News from ASCO GU 2019

The use of combination treatments for advanced renal cell carcinoma (RCC) was a highlight at the recent American Society of Clinical Oncology (ASCO) genitourinary (GU) conference, held in San Francisco last month. In addition, there were a number of presentations about potential treatments for non-clear cell RCC, and the use of cytoreductive nephrectomy.

KEYNOTE-426
Professor Thomas Powles from the Barts Cancer Institute in London presented the results from KEYNOTE-426, a global, open-label, phase 3 study to assess the efficacy and safety of pembrolizumab plus axitinib versus sunitinib as first-line therapy for metastatic RCC. In this study, the pembrolizumab plus axitinib combination was superior in terms of overall survival, progression-free survival (15 months versus 11 months) and objective response rate in patients with previously untreated, advanced or metastatic clear-cell RCC.

Read more here

JAVELIN Renal 101
Updated results from the JAVELIN Renal 101 phase 3 study to assess a combination of avelumab (Bavencio) and axitinib (Inlyta) versus sunitinib (Sutent) as first-line treatment for advanced RCC showed that treatment with a combination of avelumab and axitinib was associated with improved progression-free survival (median 13.8 vs 8.4 months) and objective response (51% vs 26%) compared with sunitinib monotherapy in patients with previously untreated advanced RCC.

Read more here

TIVO-03
The phase 3 TIVO-3 study compared the efficacy and safety of tivozanib to sorafenib in patients with metastatic RCC who had failed treatment with 2-3 prior systemic therapies. The results of the trial proved tivozanib to be superior to sorafenib in terms of median progression-free survival (5.6 months versus 3.9 months), objective response rate (18% versus 8%) and tolerability.

Read more here
Potential treatments for non-clear cell RCC
There were a number of presentations that showed promise for the use of combination treatments and monotherapies for non-clear cell RCC:
CARMENA
The CARMENA study compared the use of nephrectomy followed by sunitinib with sunitinib treatment alone, and found that many people with advanced RCC can avoid nephrectomy without compromising survival. There were three interviews at ASCO GU 2019 discussing the results of CARMENA from the patient's, medical oncologist's and surgeon's perspectives. The overall conclusion was that there still remains a need for nephrectomy, but the ‘one size’ approach does not ‘fit all’. For end-stage patients, overall survival should not be overestimated as the most important aim.






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Action Kidney Cancer · Action Kidney Cancer, 11th Floor · 3 Piccadilly Place · Manchester, M1 3BN · United Kingdom

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