Redefining the Cancer Experience 2015 Annual Report 07337A.indd 1 8/9/16 5:35 PM ABOUT THE CANCER SUPPORT COMMUNITY As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC) is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. CSC achieves its mission through three areas: direct service delivery, research and advocacy. The organization includes an international network of Affiliates that offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington D.C. and across the nation. For more information, please call 1-888-793-9355, or visit CancerSupportCommunity.org. So that no one faces cancer alone.® TABLE OF CONTENTS By the Numbers .................. 4 Redefining the Cancer Experience Through Research ......................6 Support ...................... 8 Education .....................12 Advocacy......................14 Community ....................18 Thank You ...................... 22 Financial Report ................. 27 07337A.indd 2 8/9/16 5:35 PM Dear Friends of the Cancer Support Community, Thank you for your allowing us to be part of your journey, for your continued support and most of all, for your dedication to redefining the cancer experience. 2015 was a landmark year for the Cancer Support Community—a year in which we as an organization saw tremendous growth, and we as a community saw tremendous change in the cancer experience. These changes in the patient experience lead to a new vision where we as a community evolved from the idea of keeping patients at the center of their care to the practice of actively working with patients in directing their care. In a world with patient-directed care, people living with cancer are instilled with a sense of empowerment to advocate for themselves and have the knowledge needed to make informed decisions about their treatment and care alongside their health care team. To achieve this vision of patient-directed care, we must create solutions for some of the greatest needs facing people who are living with cancer today, such as the need for more insight into the patient and caregiver experience, more educational and supportive resources about the cancer experience, and transparency between patients and their health care teams. The health care community needs a deeper insight into the true patient and caregiver experience in order to provide people with the highest quality care. This means learning more about the physical, emotional, social and financial impact of cancer. Our Research and Training Institute continues to learn more from the Cancer Experience Registry to develop this much-needed insight, share it with the cancer community, and in turn, redefine the cancer experience. People impacted by cancer need more access to information about the price and quality of their care in order to make informed decisions. Our Cancer Policy Institute is working directly with policymakers and advocates to create a system of transparency so that all patients have access to high-quality, comprehensive cancer care that includes social and emotional support. Currently there are more than 14 million cancer survivors living in the United States. By the year 2022, that number is expected to grow to more than 18 million. However, the number of health care professionals in the United States is not expected to increase at a comparable rate, creating a need for services to be delivered outside the physician’s office that will improve the lives of people living with cancer. Our Affiliate Network, Cancer Support Helpline, distress screening tool and educational resources provided through our Frankly Speaking About Cancer programs are doing exactly that. By creating patient communities in person, online and over the phone, we are giving patients more opportunities to be drivers of their own cancer care. These are just a few of the ways we are working to continue to improve the cancer journey. Redefining the cancer experience so that care is patient-driven will not be easy, but it is certainly possible. And we are working every day to achieve that vision. Warmest regards, Kim Thiboldeaux Jill Durovsik Chief Executive Officer Board Chair 07337A.indd 3 8/9/16 5:35 PM FACEBOOK TWITTER LINKEDIN INSTAGRAM PINTEREST CSC BLOG SESSIONS 114% 29% 73% 145 30% 42% GROWTH GROWTH GROWTH FOLLOWERS GROWTH INCREASE LAUNCHED IN AUGUST COMMUNICATIONS 4.16 BILLION PEOPLE REACHED FROM 2015 MEDIA MENTIONS #CSCEMPOWER CAMPAIGN REACHED DEVELOPMENT 8.25 million people EDUCATION 2,449 251,617 71,221 FSAC PROGRAM WEBPAGE FRANKLY SPEAKING ABOUT PARTICIPANTS VIEWS CANCER MATERIALS DISTRIBUTED 4 C ANCER SUPPORT COMMUNITY 07337A.indd 4 8/9/16 5:35 PM 99% 78% INCREASE IN CALLS INCREASE IN UNIQUE TO THE CANCER CALLERS TO THE SUPPORT HELPLINE CANCER SUPPORT HELPLINE PROGRAMS 33,600 375 VISITS TO ONLINE GAS CARDS GIVEN SUPPORT GROUPS TO PATIENTS WITH IN 2015 METASTATIC LUNG CANCER CSC AFFILIATE 44 3 7 120 332 NETWORK OPEN AFFILIATES IN HOSPITAL SATELLITE LICENSED AFFILIATES DEVELOPMENT PARTNERSHIPS LOCATIONS MENTAL HEALTH PROFESSIONALS MORE THAN MORE THAN 60,000 CANCER CANCER 1,000 10,000 INSURANCE GRASSROOTS REGISTRY MEMBERS CHECKLIST ADVOCACY NETWORK EXPERIENCE DOWNLOADS MEMBERS INSTITUTE 11 CANCER-SPECIFIC REGISTRIES POLICY REGISTRY CANCER ANNUAL REPORT 2015 5 07337A.indd 5 8/9/16 5:35 PM “I do consider myself an advocate. That means that I have to know as much about my own condition as possible to assure I get the best care, but also that I reach out to other people and educate them. I have a special mission to get people on clinical trials. I want to remove the stigma that people with lung cancer encounter all the time. I want people to know that they can involve other people in their care—their family and friends—to help them understand what is happening and get through it. The Cancer Experience Registry® really is a place that patients and caregivers can talk about these issues and talk to each other. There’s nothing else like it.” —Ide Mills, Living with stage IV lung cancer Lung Cancer Advisory Council Member Redefining the Cancer Experience Through RESEARCH Changing the Cancer Experience Shaping the Through Research Future The Cancer Support Community’s robust research initiatives aim to ensure The Cancer Support that our programs help people affected by cancer, today and in the future. Community’s research 2015 was an extraordinary year, marked by the growth and expansion of our gives voice to the cancer community-driven Cancer Experience Registry, improvements to our website community in ways that make it easier for people to find and share information, presentations to only possible through promote the patient voice and progress on a tool to assess caregiver distress. community-initiated Today, the Registry has more than 10,000 members. research. But that is not enough. Redefining the cancer experience demands that CSC take an active leadership role Sharing with the Community in communicating what is learned to the larger cancer Sharing what we learn with the cancer community is vital to ensuring community and using that the patient voice is used to redefine the cancer experience. In 2015, this knowledge, wisdom Research and Training Institute staff presented at leading cancer and and insight to affect real public health symposia, including the American Society for Clinical change for patients and Oncology (ASCO) Annual Meeting, ASCO Palliative Care Symposium, the their loved ones. American Society for Hematology, the National Comprehensive Cancer Network, the San Antonio Breast Cancer Symposium, the Society for We are grateful to the Behavioral Medicine, the Association for Value-Based Cancer Care and the individuals and organizations that support the Research World Congress of Psycho-Oncology. and Training Institute in this Presentations, posters and published peer-reviewed articles addressed critical mission, including: Amgen issues facing patients and caregivers, such as: Oncology, Bayer, Boehringer Ingelheim, Bristol-Myers • The role of distress screening in doctor-patient communication Squibb, Celgene Corporation, • The impact of financial toxicity on emotional health Genentech Inc., Helsinn, • Attitudes and beliefs influencing treatment adherence Janssen, Lilly Oncology, • The impact of symptom burden on communication about palliative care Pfizer, Pharmacyclics, Inc. • How perceptions of the cancer experience change over time and PhRMA. 6 C ANCER SUPPORT COMMUNITY 07337A.indd 6 8/9/16 5:35 PM Growing the Cancer Experience Registry The Cancer Support Community’s Cancer Experience recognizes that caregiver needs are often unmet, Registry enables people with cancer to make their and their voices unheard. Less common cancers voices heard, connect with each other and identify affect fewer people issues related to the realities of living with cancer. but can be as complex This unique resource gains strength from the in the questions they SPECIALTY REGISTRIES number of people who participate and the depth of raise. People with Breast cancer the information shared. For these reasons, growing gastric cancers may Caregivers the Registry is a high priority. Growth means more feel isolated and have Chronic lymphocytic leukemia participants and information but also means difficulty finding Chronic myeloid leukemia expanding the pathways used to share findings with Lung cancer others with similar Melanoma the community. Improvements to the CSC website experiences. These Metastatic breast cancer in 2015 make it easier for Registry participants to Specialty Registries Multiple myeloma register, customize their experience, receive updates address the unique Multiple myeloma caregivers and connect with others. shared experiences of Prostate cancer Stomach (gastric) cancer people with specific The information we learn from the Registry benefits kinds of cancer.