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Claudia Ungarelli: Hi everyone, my name is Claudia Ungarelli and I'm here today as a patient advocate together with Tania Chincagranna on behalf of ANTURE, the Italian Kidney Cancer Association. We're very grateful because when we were invited here, we received invitation and we thought we will just participate as audience, but instead, we are also here in the role of speaker. This is a great opportunity for us, especially on this important day. Thank you so much, Andrea, for the invitation.

We thought it will be a good idea to use this moment to give everybody a brief introduction about who we are, our development and our projects, but before we get to that, I would like to start with our why. Why should we together be advocating to engage our patients in all aspects of care? To answer this question, I would like to use a quote from a colleague of yours, Dr. Michael Jewett who we had the pleasure to meet last month at the International Kidney Cancer Summit. Not so much far away from Milan.

As many of you know, Michael is part of the International Kidney Cancer Coalition Board and Professor of Surgery at the Princess Margaret Cancer Center and University of Toronto. He gave the inaugural International Kidney Cancer Coalition clinical lecture last summer in July at the European Association of Urology, which was titled Provocatively, and he reads, "Patient engagement is a potential blockbuster treatment the urologists should prescribe for their cancer patients."

The intent being that taking a look at the data and this... So this was a secondary endpoint of a large study with over 700 patient with the metastatic disease in New York. Here, a randomized selection of approximately half of the patients had access to a reporting system of the side effects of their therapy and to an educational program on the toxicities of their therapy that allowed for early therapy changes. If they had a side effect, they recognized it as such, and secondly, they had access to report it rather than waiting for the next scheduled appointment. The result of this study interestingly showed an overall survival advantage for patients with access to this monitoring and reporting system compared to those without. As you can see from the curves, which I'm pretty sure you're very familiar with, there is at least a 10% survival advantage among those patients with access consistently over time.

It appears that this engagement strategy, this patient engagement was the equivalent of a drug, a blockbuster effect, a therapy. Had this been the outcome of a clinical trial for a new drug, probably this would have been approved by the FDA or by the European Medical Association for using the clinic. Here, there are a couple more papers about this topic along these lines. Here are breast cancer patients and they received a biweekly psychological support session that involved education. You can see very clearly all survival metrics were improved by that strategy.

Here, there is a similar intensive program that evolved not just psychotherapy, but also physical exercise and other informational sessions. This interesting data really struck with us and speaks to an important point. A patient's engagement is beneficial, and consequently, we should all be advocating to engage our patients in all aspects of care. By engaging them, their lives get prolonged. What clinicians can do to encourage and support patients advocacy and engagement. Here, there is a list of bullet points.

To go briefly through it, they can develop strategy to encourage patients to participate in engagement activities including support for advocacy groups, as well as patient educational program, encourage patient-centered care by a multidisciplinary team, provide timely access for reporting clinical side effects, and endorse patient advocates and their mission as well as listening to patient voices when designing guidelines and clinical trial. I think we heard a lot of conversation today about that.

I want to go briefly to talk a little bit more about ANTURE. It was October 2007 when on an online website forum, some patients started looking for information about their disease and the therapies that were successful at the time. Does anyone use this drug beside me? Does anybody have similar collateral effect? These were the initial questions, and as you can imagine, the conversation became a hot topic and more people joined the online discussion.

With the arrival of Facebook, two Facebook groups were created, which still exists today. These are a space where patients and caregivers and their family can tell about their ups and down, the struggle and hear as well the experiences of other and learn from other patients. It was in May 2020, so we are quite newborn, that it was decided to form an association. This is how ANTURE was born, which is the synthesis of the common experiences of patients, caregiver and their family.

Now on the sideline of this, I would like to give you a bit of more information about my personal experience. My first close encounter with metastatic kidney cancer was on the other side of an oncologist's desk next to my father as the patient. When my dad was diagnosed as metastatic, given that the next scheduled appointment with the oncologist was two weeks down the line, I desperately started looking for information online. You know better than me, you should never do that because many statistics are just outdated and the picture just looked very, very dark.

So randomly, I bumped on Facebook into ANTURE and they helped me, giving me hope as well as they gave me practical information on the next steps. I became my dad's caregiver and advocate. At that point, I offered help to ANTURE, whose mission is to help patients and their families, guaranteed the best quality possible, quality of life to them, access to more drug treatments and protection of patient rights. In order to achieve this goal, ANTURE supports study, scientific research and communication activities around the topic of kidney cancer.

The next thing I would like to talk about is the challenges that patients bring to our attention. When they contact us, they ask for tips about how to deal with second opinions, questions on side effects, questions on postoperative process, question about the post-surgery trajectories, question on the lines of therapy, how to participate in clinical trials, questions on where to go to get surgery and information about complementary non-invasive treatments, and also, many patients contact us to have information about genomic testing and we recognize that there is widespread misinformation about kidney cancer patient on this topic and also, they call us because they have this sense of abandonment and lack of empathy and participation from the doctors with regards to their journey.

I must admit it is very heartbreaking for us to watch all these people go through that. We were born during COVID, but despite being born during such challenging times, we managed to carry out some activity. Together with FAVO, the Italian Federation of Voluntary Association in Oncology, we produced a booklet on kidney cancer. We organized a bunch of events. We held webinars on the important link between nutrition and kidney cancer, together with Dr. Francesco Trevisani and Dr. Arianna Bettiga from Raffaele who many of you probably know already.

We carry out public affairs activity targeting European and Italian institution such as writing letters, participating in institutional events at the Italian Ministry of Health as well as the European Parliament. We have established a scientific committee that is currently a work-in-progress and we work together with Elma Research and Ipsen to carry out a qualitative research project named the Quality of Life of Kidney Cancer Patients. I would like to just show you a very short trailer of the video which collects the testimonies of patients with kidney cancer.

All right, so this was just a shorter version of the video. There is also a longer one. If you're interested, you can find it on our website. Project in the pipeline. We're looking for sponsor for the publication of a booklet on kidney cancer, especially regarding the link between nutrition and physical activity. We would like to launch a forum on our website for Q and A for patients and caregivers of kidney cancer and have experts reply to those questions.

We wish to organize an event on issues related to kidney cancer focusing on therapies and genomic testing. This is because as I said before, we recognize that there is a lot of misinformation among kidney cancer patients on this topic. Also, we want to start soon, the organization of biweekly webinars on the link between kidney cancer, malnutrition and physical activity. We are hopeful and ambitious. We really hope to be able to carry out many more projects and we are really grateful to be here today.

We would like to solicit support from all of you. We think that there is an opportunity for clinicians to step up and take more of an advocacy role within their healthcare system, and somehow, we as advocates, we need to bring you the voices of patience to come and walk with us because we're just so much stronger together. Dr. Jewett told us this anecdote from a clinician in Japan that I would like to retell you. Michael had asked a Japanese clinician, "How did you get Nivo approved so quickly?" The Japanese clinicians said that the doctors of the Japanese association talked to the government while at the same time, a patients group in Japan had a letter writing campaign and got over 1 million signatures to approve Nivolumab swiftly.

This is the power of advocacy and this is to reiterate the message of why it is important that clinicians and clinical organizations to be partners with the patients advocates, because at the end of the day, we are all here for the same reason. Before wrapping up, I would like to thank Andrea for giving us this great opportunity and a platform to speak on behalf of kidney cancer patients. It's an honor to be here.

We would like to thank Fabiana Laurenti who is in the audience who recently graduated from her master degree in sciences and technique of preventive and adapted motor activities who share with us, in memory of her mother, her thesis focusing on the link between motor activity and kidney cancer, and who designed a motor protocol that was recently awarded for kidney cancer patient and I wish to thank dad and all the other patients who are the reason why we're here today. I would like to conclude our presentation using a quote from Nobel Prize Rita Levi-Montalcini. "Above all, don't fear difficult moments. The best come from them." May this be a good wish for us all. Thank you.