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Lisa Goldman
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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: 1
- Moderators:Toshiyuki Sawa, A.C. Škufca Smrdel
- Coordinates: 10/17/2017, 15:45 - 17:30, Room 315
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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)
16:25 - 16:45 | Presenting Author(s): Lisa Goldman
- Abstract
- Presentation
Abstract:
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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