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A.C. Škufca Smrdel
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MS 19 - Elevating the Lung Cancer Voice: Raising Awareness and Creating Community (ID 541)
- Event: WCLC 2017
- Type: Mini Symposium
- Track: Patient Advocacy
- Presentations: 5
- Moderators:Toshiyuki Sawa, A.C. Škufca Smrdel
- Coordinates: 10/17/2017, 15:45 - 17:30, Room 315
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MS 19.01 - Transformative Science in the Community (ID 7732)
15:45 - 17:30 | Presenting Author(s): Jim Baranski
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This presentation will discuss 3 discoveries that radically changed our understanding of lung cancer. It will also address the challenges faced in communicating these life-saving “bench to bedside” discoveries to patients. In 2007, the National Science Foundation (NSF) released a report on the meaning of “transformative research” (TR) as follows: "Transformative research involves ideas, discoveries, or tools that radically change our understanding of an important existing scientific or engineering concept or educational practice or leads to the creation of a new paradigm or field of science, engineering, or education. Such research challenges current understanding or provides pathways to new frontiers.” Discoveries that changed our understanding of lung cancer: 1. PD-1/PD-L1: The discovery of PD-1 leads to development of PD-1/PD-L1 inhibitors i.e. immunotherapy. 2. Gene Defects: The discovery of gene defects/mutations leads to understanding that lung cancer is in fact many lung cancer mutations and leads to development of targeted therapies and precision medicine. 3. National Lung Cancer Screening Trial (NLST): The NLST lead to the conclusion that low dose CT scans can detect lung cancer earlier and lead to better treatment options and increased survivorship for lung cancer. In the United States, according to a recent study by Northwestern University’s Kellogg MBA program, the public is dangerously uninformed about our nation’s second leading cause of death; only behind heart disease. Lung cancer accounts for more deaths than any other cancer. More than breast, prostate and colon cancer combined! An estimated 155,870 deaths are expected to occur in 2017 in the United States, accounting for about 26% of all cancer deaths. However, federal funding for lung cancer research per death was just $1,680 compared to $24,846 for breast, $12,644 for prostate and $6,344 for colon. Not surprisingly, lung cancer has the lowest 5-year survival rate of the other most common cancers: only 18%, versus prostate at 99%; breast at 89%; and colorectal at 65%. It is clear that lung cancer is the leading cause of cancer death, and yet, it is tragically underfunded in terms of research. We will explore communication tactics including multimedia public awareness campaigns, public service announcements and social media most effective in raising the voice of lung cancer and the impact of “transformative research” in the community.
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MS 19.02 - Lung Cancer Awareness Month: Unity through IASLC – Organizer Perspective (ID 7733)
15:45 - 17:30 | Presenting Author(s): Kristin Richeimer
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A Harmonized Strategy for Lung Cancer Awareness Month – November 2016 In early 2016, IASLC proposed a common strategy for the benefit of all lung cancer organizations during Lung Cancer Awareness Month. It was agreed by advocates and advocacy groups that IASLC is in a unique position to lead this unified effort among advocacy organizations. This campaign was supported by independent educational grants from Merck & Co., Inc., Eli Lilly and Company and Helsinn. Objectives for the common strategy for Awareness Month: Inform the public that everyone can get lung cancer (e.g. break down stigma) and share stories. Raise money, increase resources for research. This was done via individual organizations, not a common donor campaign, so we do not necessarily have metrics on funds raised. Reduce mortality & suffering by communicating to the public the exciting scientific advancements, which provide HOPE and PROGRESS in lung cancer. The joint public awareness campaign, supported by all the organizations, included the development of a common logo (seen above); common infographics featuring clear messages and vibrant photos showing people living their lives with lung cancer. The campaign shared stories that represented the demographics of spouses/caregivers/family and tried to show the diversity of all types who will get lung cancer. The common website (www.LCAM.org) was the focus and link shared during LCAM. We developed an advertising and public awareness campaign that included both print, digital and social media outlets. The advertising campaign included print advertising in New York Times and Wall Street Journal (Rocky Mountain Edition); a digital campaign featuring banner ads and video “pre-roll” ads; and a social media campaign utilizing both organic and paid campaigns. Key Metrics: More than 60 Survivors & Caregivers shared their stories on . More than 20 partners participated in the campaign. More than 25,000 pins, t-shirts, bracelets and posters were distributed in November.Facebook Twitter LCAM Youtube Channel 9,500 Likes in November 2016 #LCAM Impressions - over 51M in November 15 Videos (:30 Seconds to 2 minutes long) 38,000 Likes as of January 31, 2017 Daily Tweets of Survivor Stories Over 2,000 Views 28,000+ Post Likes/Shares/Clicks Over 100 Followers Re-tweets by Alec Baldwin, US Actor
Major Highlights/Activities: Organized Kickoff Event at the National Press Club in Washington, DC on November 1[st] 3 Travel Awards granted for LCAM 2016 Meeting in September 2016 2017 Objectives: Expand to include more global partners – Latin America, Asia, Rest of World Expand to include more Cancer Center/institutional partners Improve the diversity of the participants Improve website technology and social sharing Include more scientific advances linked with survivor stories Expand media kit and social sharing tools Increase sponsorship to support an expanded campaign Thank you to our Partners! Caring Ambassadors Dusty Joy Foundation (LiveLung) LUNGCAN Free Me From Lung Cancer Free To Breathe Lung Cancer Foundation of America Lungevity Lung Cancer Research Foundation Chris Draft Family Foundation Faces of Lung Cancer Clifton Mountain Foundation Bonnie J. Addario Foundation American Lung Association Lung Cancer Initiative of North Carolina Lung Cancer Europe Women Against Lung Cancer Europe Patient Power Rexanna’s Foundation Upstage Lung Cancer University of Colorado Cancer Center …and many lung cancer survivors and researchers Special thanks to the LCAM 2016 working group: Janet-Freeman Daily, Dusty Joy Donaldson, Cynamon Frierson and Mary Henningfield. Participants: A consortium of individuals, including lung cancer survivors, and more than 20 different advocacy organizations in the USA and Europe, with IASLC coordinating the effort. There is potential for a worldwide campaign in the future.Digital Analytics Print Ads Over 30,000 Website Visitors 1/2 page full color ad New York Times - Page A8 Video and Web Banner Impressions - More than 18M NYT Circulation = 651,458 Video Views & Web Banner Clicks - 78,202 (2) 1/2 page full color ads WSJ Rocky Mountain Edition Click-through-rate 8x industry benchmark WSJ Rocky Mountain Edition Circulation = 45,000 View-through-rate of 80-84%
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MS 19.03 - The ROS1der Story: How a Group of Patients, Doctors and Advocates Launched an International Research Effort (ID 7734)
15:45 - 17:30 | Presenting Author(s): Lisa Goldman
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In May 2015, I attended a conference for lung cancer patients in Washington DC. There were close to 200 patients in attendance, but only five with my specific diagnosis: ROS1+ Adenocarcinoma. We saw what a minority we were within the lung cancer community and knew it would be up to us to find and create our own “tribe.” The five of us met up in the hotel bar to discuss how we might find other ROS1+ patients to share knowledge and improve our survival odds. Our first step was to create an online presence. Upon returning home from the conference, Tori Tomalia, Janet Freeman-Daily and I started a private Facebook group for people with ROS1+ cancer. We welcomed patients and caregivers and invited them to share their diagnosis stories, treatment paths and other experiences related to having ROS1+ cancer. We combed the internet searching for other ROS1+ patients, and we spoke to our doctors and friends in the lung cancer community to try to spread the word. In the first few months, membership ramped up fairly slowly, but we were a close knit group, sharing critical information, and making a difference in each other’s lives. The more I learned, the more it became apparent that essentially no one was conducting research focusing on ROS1+ cancer. We had gotten lucky that the ROS1 fusion was similar enough to the ALK mutation (which occurs with more frequency and has a larger patient population), that ROS1 had been able to piggyback on the ALK research. But no one was specifically examining ROS1, and while the first generation ALK research generated Crizotinib, a therapy that proved exceptionally effective for ROS1, some of the most exciting second generation ALK research was not looking as promising for ROS1. Obviously, this was disconcerting. So, while attending WCLC in Denver in September of 2015, Janet and I pulled Dr. Ross Camidge (Univ. of Colorado) aside to ask him one very important question: How can we get ROS1-specific research going? His answer: Organize. Research cannot happen without a cohort of patients to study, and gathering enough ROS1+ patients is difficult for researchers. Dr. Camidge’s words lit a fire under us. Janet, Tori and I decided to increase our efforts to recruit ROS1 patients to our Facebook group. All three of us published blogs, redoubled our efforts scouring the web and contacting doctors, and sought out other media opportunities. Within a couple of months, we’d doubled our membership, including many international patients, and we decided it was time to seek outside help. I contacted Bonnie Addario, a long-term lung cancer survivor and founder of the Addario Lung Cancer Foundation (ALCF). I knew Bonnie was a strong proponent of “patient centric” research, and I also knew the ALCF (and its sister organization, Addario Lung Cancer Medical Institute (ALCMI)) had successfully launched the “Young Lung Study” the previous year. Since both young lung cancer, and ROS1+ lung cancer, are minorities in the lung cancer space, requiring researchers to cast an international net to gather a critical mass, I felt that the ALCF and ALCMI had demonstrated both the interest and experience necessary to help shepherd a global ROS1 research effort. Luckily, Bonnie agreed, and soon the ALCF and ALCMI joined our team. As patients and caregivers, we began calling ourselves the “ROS1ders” (pronounced “ross-wonders”). A core group of about 5 ROS1ders did most of the work, but we would check in with the broader Facebook group for feedback periodically. By December 2015, the ROS1ders delivered a list of our research priorities to ALCF. Dr. Guneet Walia, ALCF’s Senior Director of Research and Medical Affairs then began reaching out to researchers and industry--and the Global ROS1 Initiative (the “Initiative”) was born. The first project of the Initiative was an epidemiological survey. ROS1ders worked together with Dr. Walia and a Stanford University researcher to develop a survey, designed to uncover commonalities which might indicate causes for the ROS1 oncogene, and help direct where to focus future research. Over 100 ROS1ders from around the world filled out the survey. Data analysis is underway, and a second generation follow-up survey is coming. Guneet discussed some of the initial findings of this study at WCLC 2016 in Vienna. Our second project is even more ambitious. Only a few models of ROS1 cancer exist. To encourage more research into ROS1 cancer, we are partnering with researchers and organizations to create new ROS1 cancer models (both cell lines and mouse models) using fresh biopsy and surgery specimens donated by ROS1ders. Models created by ROS1der donations will be made available (freely or at minimal cost) to academic researchers. Orchestrating the Initiative is a major undertaking. A group of the most involved ROS1ders and ALCF and ALCMI members have weekly conference calls. In between calls, each of us work on our individual pieces, such as meeting with researchers, negotiating contracts, writing content for websites, speaking at conferences, and fundraising. Since this project is the first of its kind, it’s not surprising that sometimes we face hiccups and hurdles. Patients, caregivers, researchers, advocacy organizations and industry are learning how to work with each other as peers, and occasionally the learning curve is steep. The global nature of our project adds legal complexities, language barriers and time zone juggling to the mix. We are all evolving and changing the way research can be done. The Initiative is a groundbreaking example of international patient-driven research. Its success reflects the collaborative efforts of so many dedicated to achieving something truly special. From its inception at a hotel bar in Washington DC to today, ROS1der voices have been involved every step of the way. We hope the Initiative not only changes the lives of ROS1ders, but paves the way for other motivated patient groups to pursue their own goals. We are so proud and excited to see our vision manifest.
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MS 19.04 - Shine a Light on Lung Cancer: The Evolution (ID 7735)
15:45 - 17:30 | Presenting Author(s): Alana Shea Boyd
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Background/History A lung cancer diagnosis can be devastating to both the patient and their loved ones. Often times, lung cancer patients and caregivers report feeling isolated and hopeless. In 2004, there were very few events across the United States which connected the lung cancer community. One advocate, whose husband was fighting lung cancer, sought to change that and held the very first Shine a Light event in November 2004 in Santa Rosa, CA. Little did they know, this local event would turn into a movement. In 2006, a few advocates in Boston held a similar Shine a Light on Lung Cancer Vigil—a “rally” for lung cancer on the steps of the Massachusetts state house, to honor and remember those who have been touched by the disease and to raise awareness during Lung Cancer Awareness Month (LCAM). In 2008, they were determined to grow this event and offer local communities an opportunity to connect with others impacted by this disease and Lung Cancer Alliance was there to help them achieve their vision. Purpose Shine a Light on Lung Cancer’s primary purpose was and continues to be raising awareness about lung cancer and connecting the community. The events are always free to attend and free to host as we want to eliminate any barriers to participation. Shine a Lights began as “vigils”, and have always incorporated a moment of silence and the literal act of shining a light—whether that be a glow stick, flashlight, candle, or illumination of a room or building—to remember those we’ve lost to this disease. In 2014, Lung Cancer Alliance decided to drop the word “vigil” from the program title, as vigils often connote a feeling of sadness or mourning, and the purpose of Shine a Lights were to provide hope, support and inspiration to all those impacted. Each Shine a Light program still incorporates a moment of silence and shining of lights, however, we focus that moment to celebrate the survivors in attendance, while also remembering those who have passed away from this disease. This signature element of Shine a Lights can often be emotional and is typically the culminating activity of the event. Shine a Lights are also a great platform for local media attention. In an effort to leverage this attention, from 2008 through 2015, we encouraged organizers to host their event on the official Shine a Light date (voted on by past organizers and ultimately chosen by LCA). However, due to lack of national coverage and confusion from potential organizers on the official date, in 2016, we stopped choosing an official national date. Impact The impact of our Shine a Light on Lung Cancer program has far exceeded our initial expectations. The initiative continues to grow and evolve year after year and we continually adapt and improve the program based on feedback from organizers and attendees. When Shine a Light began, events were typically organized by individuals in communities who wanted to do something during Lung Cancer Awareness Month. They incorporated survivors, caregivers, physicians and local notable members of their communities (i.e. news reporters, local politicians, and entertainers) into their programs, to educate attendees about lung cancer and inspire action with a unifying national call to action. In 2013, Lilly Oncology came on board as a national title sponsor and their sales force began to spread the word about these unique events to their customers—healthcare providers. Shine a Lights are a great way for nurse navigators to celebrate their patients during Lung Cancer Awareness Month and highlight their programs and services—particularly on the heels of Breast Cancer Awareness Month—and especially with our “event in a box”. Organizers complete a very simple online LOA which contains all of their event information, after which they receive access to our online resources (i.e. template flyers, programs, sponsor logos, media outreach instructions, and more). In October, each organizer will receive their Shine a Light “kit” in the mail, which contains bracelets, flashlights, a poster and educational materials for their attendees. Although we had had a handful of Shine a Lights taking place in healthcare facilities before 2013, with Lilly’s involvement, the numbers grew. Simultaneously, we noticed Shine a Lights which were hosted by individuals were becoming more unique and personalized to their local community (i.e. paint and sip parties, yoga classes, and backyard barbecues). Because of this natural distinction, we evolved the program in 2016 to include Shine a Light, traditional events hosted by a healthcare facility during LCAM, and Shine a Light Your Way, unique awareness and fundraising events hosted by individuals in their local communities throughout the year. Due to this split, our traditional Shine a Light numbers saw a slight dip in 2016 as they no longer included events being hosted by individuals, but we anticipate continued growth in 2017 as the program evolves. Future Goals In 2016, 166 Shine a Light events were held in 38 states. Our goal for 2017 is to reach 200+ events in all 50 states and Washington, DC. We are also looking to make an even bigger global impact in 2018. The first international Shine a Light was held in partnership with the Australian Lung Foundation in 2011 and we have had seven unique countries host at least one Shine a Light since then. We hope to expand our national reach while bringing this unique program to many more worldwide, and continue connecting the lung cancer community—offering hope and inspiration, letting those who are impacted know they are not alone.
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MS 19.05 - "How to Beauty Your Day": Looking Good, Feeling Better - An Italian Approach (ID 7736)
15:45 - 17:30 | Presenting Author(s): Stefania Vallone
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It is estimated that in 2015, approximately 3 million people in Italy have received a cancer diagnosis during their lifetime. While in men cancer has decreased of 2.5%, in women the cases have risen from 168,000 to 176,000. Epidemiological data of lung cancer reveal a dramatic increase of the incidence and mortality in women, mainly due to the tobacco consumption in the female population during the past 60 years and since the 1980s, the gap between the two genders has narrowed. Nowadays lung cancer represents a global women’s health issue and every year more women die due to lung cancer than for breast, ovarian and uterine cancer all together and receiving a cancer diagnosis together with the communication about treatment and care can lead to a series of extremely stressful and frightening events that cause both patients and their relatives to suffer emotionally. Psychological distress, depression and anxiety are related to poor quality of life in all its shapes and forms, including the physical-side. The disease and the treatments alter the patient body image and consequently change the personal identity; the body is no longer recognized and accepted in its new condition, and this may undercut the sense of femininity and diminish the confidence in the physical appearance and the self-esteem. It gets difficult for a woman to face the daily life because she is exposed to the external world with a body revealing visible signs of the illness and care. For addressing these issues, it is necessary to implement an holistic approach and this is one of the objectives behind the active commitment of WALCE (Women Against Lung Cancer in Europe) since 2006, when it was established. In 2009, it started the collaboration with “La forza e il sorriso – L.G.F.B. Italia”, the Italian version of a well-known program called “Look Good ... Feel Better®”, launched in US in 1989 and currently active in 26 countries worldwide. It is a free make-up workshop project for women diagnosed with cancer who are undergoing chemotherapy, radiotherapy or other cancer treatments. Beauty workshops are offered to help women to cope with treatment side effects and to regain the femininity and the self-confidence in their body with the aim to improve their quality of life by simple beauty techniques to enhance the appearance. Following this positive experience, WALCE designed a lung cancer awareness campaign, called: “How to beauty your day”, a make-up session program for women of all ages affected by cancer with the aim to reach little and peripheral hospitals in Italy, where the initiative “La forza e il sorriso” has not been provided yet and hospitals, where no general support programs for women with cancer have been developed. This initiative was launched in November 2010, during the World Lung Cancer Awareness Month and in some way it recalls the other one, but with some new addition. Together with the beauty sessions, educational events are organized with the aim to improve and reinforce the knowledge of people about the disease, the current treatment options, the side effects and any other related issues. This program was firstly carried out just in Italy and later on, it was expanded in other European countries (Spain, Serbia and Greece). From November 2010 to November 2016, WALCE organized 76 make-up workshops in several Italian locations and in Europe, in collaboration both with cancer centres and no profit organizations working in these areas; about 750 ladies attended the make-up workshops, guided by 7 voluntary beauticians and with the support of a psycho-oncologist. At the end of the session, the women are invited to complete a survey to assess the event and benefits received. The general response received until now is positive; most of participants declare to have learnt useful advice and to be very enthusiastic, whereas very few are a little doubtful. The most common adjectives used to describe patient feelings at the end of the experience are: beautiful, happy, positive, pretty and attractive. From the survey results, it seems that most of the ladies don’t think about the illness during the event and meeting other women in a similar situation is considered a positive experience. Cancer patients tend to better cope with the illness when self-confidence and self-esteem are regained. The sense of well-being shared in a relaxed atmosphere, acknowledging social, emotional and psychological needs and being amongst other ladies who feel the same fears or anxieties, has proven to be an incentive to fight against cancer. Figure 1 Pikler VI, Brown C: Cancer Patients’ and Partners’ Psychological Distress and Quality of Life: Influence of Gender Role. Journal of Psychosocial Oncology, 28:43–60, 2010 Honda K, Goodwin R: Cancer and mental disorders in a national community sample: Findings from the national comorbidity survey. Psychotherapy and Psychosomatics, 73: 235–242, 2004 Tuinstra J, Hagedoorn M, Van Sonderen E et al: Psychological distress in couples dealing with colorectal cancer: Gender and role differences and intracouple correspondence. British Journal of Health Psychology, 9: 465–478, 2004 Fife B, Kennedy V, Robinson L: Gender and adjustment to cancer: Clinical implications. Journal of Psychosocial Oncology, 12: 1–21, 1994 Phillips C: Images, femininity and cancer: an analysis of an international patient education programme. Health, 13: 67, 2009
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