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Small Cell Lung Cancer A GIVING SMARTER GUIDE TO ACCELERATING RESEARCH PROGRESS An Executive Summary ACTION IS URGENTLY NEEDED. LACK OF NEW TREATMENT OPTIONS. INSUFFICIENT ACCESS TO BIOSPECIMENS. POOR UNDERSTANDING OF UNDERLYING DISEASE BIOLOGY. NO CURE. Lung cancer is the deadliest cancer in the United States, claiming the lives of about 160,000 Americans each year– more than breast, prostate, and colon cancer combined. More than 400,000 Americans are currently suffering with lung cancer, with more than 200,000 new cases estimated to be diagnosed this year alone. The emotional and economic costs of lung cancer are enormous. Only 17 percent of lung cancer patients survive beyond five years after being diagnosed. Additionally, the disease costs the economy more than $12 billion annually, and this is projected to increase by at least 25 percent over the next five years. There are a number of challenges and unmet needs that act as barriers to desperately needed progress in small cell lung cancer (SCLC) research. In May 2015, the Milken Institute Philanthropy Advisory Service convened a group of world-renowned SCLC experts and patient advocates to discuss the state of science relevant to SCLC and the challenges currently impeding research progress. In a new Giving Smarter Guide, the Philanthropy Advisory Service presents the key issues that were prioritized by the group and recommendations on how strategic philanthropic investments can accelerate progress in SCLC. Unfortunately, the outlook is even worse for the 15 percent of lung cancer patients who are diagnosed with SCLC, one of the most aggressive forms of the disease. Only 7 percent of these patients survive beyond five years after diagnosis. NUMBER OF ACTIVE CLINICAL TRIALS LUNG CANCER CLINICAL TRIALS (AS OF SEPTEMBER 2015) 242 250 SCLC 200 150 136 50 89 76 100 15 19 35 0 PHASE 1 PHASE 1/ 2 PHASE 2 PHASE OF CLINICAL TRIAL 1 17 PHASE 2/3 8 PHASE 3 NSCLC “The need for human SCLC biospecimens is a key underpinning of the barriers to research progress. Efforts to address this challenge would greatly aid therapeutic development for SCLC.” life-saving treatment options not only for SCLC patients, but also for patients with other forms of lung cancer. Furthermore, lung cancer frequently gives patients false hope by initially responding favorably to chemotherapy and then rapidly becoming resistant and untreatable. Treatment options for SCLC remain unchanged from the standards developed more than 30 years ago. In this Giving Smarter Guide, we outline the key barriers to SCLC research progress that have contributed to a lack of treatment options for patients. These barriers include: Given the aggressiveness of the disease, the rapid development of resistance to treatment, and the low five-year survival rate, SCLC and another aggressive cancer, pancreatic cancer, have attracted the attention of Congress. The Recalcitrant Cancer Act acknowledges that more dedicated resources need to be allocated toward recalcitrant cancers (cancers with five-year survival rates of less than 50 percent) such as SCLC. The act was passed by Congress in 2012; however, it is currently an unfunded mandate. Given the scope of what is necessary to address the key unmet needs in SCLC in order to really make a difference in the lives of patients, it is unlikely that the government would be able to fund the full scope of work. This is where strategic philanthropy can play a game-changing role. • Poor understanding of SCLC disease biology • Lack of SCLC-specific funding to support research • Lack of access to SCLC biospecimens to identify biomarkers and new therapeutic targets • Inefficient clinical trial enrollment processes and data sharing Readers will be able to use this guide to pinpoint research solutions aligned with their interests. This guide will help to answer the following questions: • Why should I invest in SCLC research? • What key things should I know about this disease? With the current attention from Congress and the success observed in treating the most common form of lung cancer, non-small cell lung cancer (NSCLC), with new immunotherapies, now is the time for the SCLC community to capitalize on this momentum. Strategic investment in research tools, infrastructure, and discovery science can play a catalytic role in developing new • What is the current standard of care? • What is the current state of SCLC research efforts? • What are the barriers preventing development of new therapeutics? • How can philanthropy expand infrastructure to support SCLC research and advance new therapies? NUMBER OF EXPERIMENTAL AGENTS AGENTS IN CLINICAL DEVELOPMENT FOR LUNG CANCER (AS OF SEPTEMBER 2015) 87 100 SCLC NSCLC 80 60 34 40 20 7 26 5 1 0 PHASE 1 PHASE 1/ 2 30 20 PHASE 2 3 PHASE 2/3 2 PHASE 3 PHASE OF CLINICAL DEVELOPMENT TO READ THE FULL GIVING SMARTER GUIDE, VISIT PAS.FASTERCURES.ORG/REPORTS The Philanthropy Advisory Service, a program of the Milken Institute, counsels philanthropists, family offices, wealth advisors, and foundations seeking to make transformative investments in medical research. We provide comprehensive, digestible information that helps philanthropists evaluate research efforts and funding opportunities in various disease areas. Our analysis is shaped by scientific advisory boards, in-depth due diligence, and an objective framework for evaluation. pas.fastercures.org