Innovations in Lung Cancer Treatment and Research CPAT Seminar June 11, 2014 Scott Santarella, President Bonnie J. Addario Lung Cancer Foundation

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1 Innovations in Lung Cancer Treatment and Research CPAT Seminar June 11, 2014 Scott Santarella, President Bonnie J. Addario Lung Cancer Foundation

2 BONNIE J. ADDARIO LUNG CANCER FOUNDATION (ALCF) How We Got Started Founded in March of 2006 by Bonnie Addario, diagnosed with stage 3b lung cancer in International non-profit based in San Carlos, CA has raised more than $10 million for lung cancer research ALCF has grown into the first international collaborative entity of its kind, raising millions of dollars for research and programs to support patients and their families. 2

3 BONNIE J. ADDARIO LUNG CANCER FOUNDATION (ALCF) Why We Do What We Do By educating patients, caregivers, nurses and clinicians we will help increase participation in clinical trials, enhance standard of care at community hospitals, and empower patients to be their own advocates, resulting in getting the right drug, to the right patient, at the right time.

4 ADDARIO LUNG CANCER MEDICAL INSTITUTE (ALCMI) ADDARIO LUNG CANCER MEDICAL INSTITUTE (ALCMI) Sister organization founded in 2008 ALCMI is a patient-centric, international research consortium -- investigators from 20+ institutions in the U.S. and Europe -- facilitating research, such as current clinical studies, CASTLE, INHERIT EGFR T790M, and Genomics of Young Lung Cancer. If money for research and development was not a barrier and a true collaboration could be achieved, what would you do to improve Lung Cancer patient survival in the least amount of time and how much would it cost? 4

5 LUNG CANCER WHERE WE ARE TODAY Estimated Lung Cancer Incidence and Mortality in the United States in , ,260 Lung cancer is the 2 nd leading cause of death behind heart disease 2 1 Source: American Cancer Society Cancer Facts & Figures National Vital Stat Report 2002

6 LUNG CANCER WHERE WE ARE TODAY Estimated Cancer Death by Site, % of cancer deaths are lung cancer 1 Source: American Cancer Society Cancer Facts & Figures 2014

7 LUNG CANCER WHERE WE ARE TODAY Percentage of New Lung Cancer Cases in Source: Centers for Disease Control 2007 Morbity Mortal Weekly Report

8 LUNG CANCER WHERE WE ARE TODAY Relative 5-Year Survival Rates 1 1 Source: Lung Cancer Alliance: LC Facts 2013

9 LUNG CANCER WHERE WE ARE TODAY Lung Cancer 5-Year Survival by State at Diagnosis, Source: SEER 2 National Cancer Institute Symptoms usually do not appear until the disease has progressed to advanced stages. 2

10 BONNIE J. ADDARIO LUNG CANCER FOUNDATION (ALCF) Innovations in Cancer Treatment and Research Technology-aided Collaboration Early Detection Genetic Testing / Personalized Therapies Community Hospital Standard of Care Empowering Patients 10

11 TECHNOLOGY-AIDED COLLABORATION Virtual Tumor Boards, an extension of the COE program, enables community centers access to institutional resources/expertise. Virtual Tumor Board Access to Thought Leaders Enhancing Standard of Care Clinical Trial Guidance Enhanced Patient Treatment 11

12 EARLY DETECTION Investigating Hereditary Risk from T790M (INHERIT) The goal of INHERIT (Investigating Hereditary Risk from T790M) is to understand how an inherited gene in some lung cancer patients could serve as an early detection screening for family members. Launched in late 2012 Three sites More than 20 participants Anecdotal success already 12

13 GENETIC TESTING / PERSONALIZED THERAPIES Genomics of Young Lung Cancer Study The development of a personalized treatment approach for young lung cancer is needed. The reason lung cancer occurs in young adults is not clear and this question has been studied little. An important hope for this research project is to find a new genotype-defined sub-type of lung cancer deserving a distinct treatment strategy. Launching in early summer 2014! 13

14 COMMUNITY HOSPITAL STANDARD OF CARE 360 Community Hospital Program ~ Lung Cancer Centers of Excellence (COE) 80% of all lung cancer patients are treated at the community level and deserve a multi-disciplinary approach to care similar to breast, prostate and colon cancers. Access to State of the Art Treatment Community Hospitals Multidisciplinary care Enhanced Standard of Care Molecular Testing Pilot Program 1 yr. Results 100% Molecularly Tested vs. 60% pre-pilot 61% Tumor Board Review vs. 15% pre-pilot 14.5 Days DX to TX vs. 28 days pre-pilot vs. national average days 2014 COE 3 COE Approved Spring 2014 (FL) 10 pending (CT, GA, MA, TN, TX) 14

15 EMPOWERING PATIENTS The ALCF Patient Handbook is a comprehensive informational and educational guide for patients, caregivers, nurses and clinicians. Patient Handbook V.1 (2013) 5,000 Hardcopies Distributed 3,000 On-line Downloads Patient Handbook V.2 Fall 2014 Mandarin and Spanish Versions Clinical Trials Section 15

16 EMPOWERING PATIENTS More than 50 percent of adults in U.S. use wireless technology for health/medical information. The ALCF mobile app allows patients to have the most current and accurate information in the palm of their hands. Smart Phone Mobile App Clinical Trial Search Partners Page Centers of Excellence Listing Physician Referrals 16

17 EMPOWERING PATIENTS To further expand/enhance patient empowerment ALCF is working with unique partners to ensure patients continue to help driving progress. Smart Patients/ALCF On-line lung cancer patient Community Patient-to-patient knowledge Sharing Personalized clinical trial search Cancer Commons/ALCF Patient driven data Rapid learning community Links researchers, patients & physicians to expedite discovery Patient benefit: receiving info on clinically actionable findings 17

18 PATIENTS HAVE THE ANSWER IT S WITHIN THEM AND THEY WANT TO LIVE! 18