This year, June 16 is World Kidney Cancer Day (WKCD). It is a day when the world’s kidney cancer community joins together to raise awareness about major issues affecting kidney cancer patients and their caregivers. For its current edition, the focus is on talking about treatment options for kidney cancer patients.
For World Kidney Cancer Day 2022 we got in touch with Anne Wilson, Board Member of the International Kidney Cancer Coalition (IKCC) and responsible for WKCD on behalf of the IKCC.
Please tell us more about the reasons of the International Kidney Cancer Coalition to initiate World Kidney Cancer Day in 2017.
World Kidney Cancer Day is celebrated around the world every year on the third Thursday of June by patients, carers, healthcare professionals and local organisations. World Kidney Cancer Day was established to have a day dedicated to raising awareness of the local and global impact of kidney cancer, educating people about the disease and making a difference in the lives of people with kidney cancer.
Despite the significant effect kidney cancer has on patients and healthcare systems around the globe, in many countries it is a little-known type of cancer with many unanswered questions related to prevention, risk factors, and treatment practices. Greater awareness can help drive the changes that will make a difference in the lives of people currently affected by kidney cancer.
This year’s motto of the awareness day is “We need to talk about treatment options”. Why?
The theme was chosen to help create more and better conversations between patients & caregivers and doctors about treatment options. The campaign is grounded in studies, including the IKCC Global Patient Surveys, that show patients and doctors aren’t discussing available treatments. This includes participating in clinical trials, which most patients would seriously consider, but few are ever asked.
However, when people are more engaged in their care and treatment, they experience a better quality of life and an improved quantity of life. Giving patients the time to ask questions and making the effort to inform, educate and consider patients’ values will lead to improved outcomes overall. That’s why we need to talk about treatment options.
Which role do clinical trials play in the treatment of kidney cancer patients?
Clinical trials have driven all advances in kidney cancer, and the last 15 years have been transformational. From new therapies to treat metastatic disease to improving surgical and surveillance techniques of localised disease, new ideas are tested, and when proven, move into standard of care.
It is a core belief of IKCC that every patient deserves access to the highest quality care and the opportunity to participate in research through clinical trials. That also means it should be offered as an option for the first, second or third line of therapy.
However, we know from the results in the IKCC Global Patient Survey 2020 that the majority of patients are not being asked to participate in clinical trials, despite their willingness to participate if asked. Specifically, 69% of patients surveyed had never been asked to participate in a clinical trial. Yet, of those, 65% said they would have participated if they had been asked.
What is most important for those living with kidney cancer, and what are currently the unmet needs of patients?
That depends on the stage of the kidney cancer. For people living with metastatic or advanced kidney cancer, the major unmet need is that there is still no cure. Only about 10–14% of people on systemic immunotherapy will go on to achieve a long-term response, and we still do not know if the cancer is cured. For the remaining 85–90% of metastatic kidney cancer patients, we need to address ways to better manage the disease so that they are living life to their fullest.
For patients whose kidney cancer is discovered early enough so they can undergo surgery to have their tumour removed, the major unmet need is improving how we detect recurrence of disease. This is significant because about one-third of patients experience a recurrence. Currently, we take expensive imaging scans of the kidneys at random intervals for 5 years, but plenty of patients have a recurrence of their cancer after 5 years. We need an inexpensive way to find recurrence – for example by detecting biomarkers in a blood sample taken at a local clinic – so patients could be screened more frequently and for a longer time after surgery.
For all kidney cancer patients, regardless of stage, treatment options should be provided within the framework of shared decision making including participating in clinical trials. For some countries, where the number of options may be limited, we would like to see robust access to whatever treatment is possible.
What are your plans regarding the upcoming awareness day on June 16?
All global activities for World Kidney Cancer Day can be found at the campaign’s website. There you will find the digital campaign in 14 languages that will drive people to a range of resources including “The six questions every kidney cancer patient should feel able to ask their doctor”.
On 16 June, IKCC will host a landmark global webinar, “Talking Treatments”, where clinicians, patients and caregivers will discuss the opportunities and challenges of making every treatment decision a shared decision, and answer questions both posted in advance and asked on the day. Registration for the global webinar is available here.
Many thanks for the interview and for your insight!