2015 Annual Report

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 73Aid 4 07337A.indd C 4

ANCER EDUCATION DEVELOPMENT COMMUNICATIONS

4.16 BILLIONPEOPLEREACHED SUPP 1 %29% 114% AEOK WTE LINKEDIN TWITTER FACEBOOK ORT GROWTH 2,449 8.25 millionpeople FSAC PROGRAM PARTICIPANTS

COMMUNIT Y

GROWTH #CSCEMPOWER CAMPAIGN REACHED 73% 251,617 GROWTH WEBPAGE VIEWS FROM 2015MEDIAMENTIONS LAUNCHED INAUGUST NTGA ITRS CSCBLOGSESSIONS PINTEREST INSTAGRAM 145

FOLLOWERS

30% CANCER MATERIALSDISTRIBUTED GROWTH FRANKLY SPEAKINGABOUT 71,221 42% INCREASE

//65:35 PM 8/9/16

PROGRAMS CSC AFFILIATE NETWORK CANCER EXPERIENCE REGISTRY 8/9/16 5:35 PM 2015

ORT

REP

THE WITH LUNG

GIVEN UNIQUE TO IN SUPPORT ANNUAL CANCER 11 HELPLINE CARDS REGISTRIES 375 MORE THAN PATIENTS LICENSED 78% CALLERS CANCER-SPECIFIC 332 CANCER GAS METASTATIC TO 10,000 REGISTRY MEMBERS REGISTRY PROFESSIONALS MENTAL HEALTH MENTAL INCREASE

SATELLITE LOCATIONS 120

7 HOSPITAL PARTNERSHIPS CALLS ONLINE GROUPS IN HELPLINE CANCER MEMBERS MORE THAN 2015 TO GRASSROOTS

1,000 IN THE ADVOCACY NETWORK ADVOCACY 99% TO VISITS SUPPORT SUPPORT INCREASE 33,600 3 AFFILIATES IN DEVELOPMENT

CANCER CHECKLIST INSURANCE DOWNLOADS OPEN

60,000 44

AFFILIATES

CANCER POLICY INSTITUTE 07337A.indd 5 “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.

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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. patients and their families in several ways. Our findings are used to develop and improve programs and services, address gaps in patient care and inform policy. In 2015, data collected through the Registry Understanding Caregiver played a key role in the development of new Frankly Speaking about Cancer® programs and a major CSC Distress initiative to increase enrollment in clinical trials. Research has shown that caregivers have a Registry data also informed planning of an innovative tremendous need for appropriate, effective and weekend-long workshop for melanoma patients timely supportive care services. Yet, no proven and caregivers to help them define their personal community-based distress screening and referral advocacy agendas. programs exist for cancer caregivers. In 2015, the A growing focus on Specialty Registries helps us Research and Training Institute conducted a study better understand the challenges facing individuals to validate a web-based distress-screening tool for with specific cancers and develop targeted resources family members and loved ones caring for someone for these communities. For example, people with living with cancer. This is the first step in building lung cancer may be managing the uncertainty of CancerSupportSource® (CSS) for caregivers—making remarkable new treatments that extend life but do much-needed distress screening, referral and follow- not offer a cure. The Specialty Registry for caregivers up care available to the whole family.

ANNUAL REPORT 2015 7

07337A.indd 7 8/9/16 5:35 PM “I was so desperate that day. Looking back over my life, that day was the lowest I have ever been. I was so frightened. And then I dialed your number. I heard your words loud and clear, whenever things got really bad for me. Thank you so much for those words. So many days and nights I would lay in bed with those words ringing in my head. They encouraged me to get up and push through. May God bless and keep you forever. I will never forget you and hope to shake your hand and give you a great big hug one day.” —Cancer Support Helpline caller

Redefining the Cancer Experience Through SUPPORT Just a Phone Call Away: Helpline Offers Support and Resources A diagnosis of cancer can lead to many emotions and even more questions. The Cancer Support Community’s Cancer Support Helpline® is here for everyone affected by cancer, offering answers to questions, connections to resources and a supportive ear. Staffed by licensed mental health professionals, the helpline is open Monday through Friday from 9:00 a.m. to 9:00 p.m. Eastern Standard Time. Cancer Support Helpline staff held their first-ever retreat at the Research In 2015, more people than ever before turned to the and Training Institute in Philadelphia, PA this year. Cancer Support Helpline for support and information. Helpline staff handled nearly 18,000 calls from more than 7,600 unique callers—a 99% increase in total Psychosocial Oncology Society (APOS) connects people call activity and a 78% increase in unique callers over with mental health services in their communities. past years. Top areas of concern included coping with emotions, financial or insurance Through continued focus on issues and finding support close reaching more patients, survivors, to home. caregivers and members of the health care team, the Cancer The Helpline does more than Support Community is determined listen. By forming key partnerships to use the Helpline to change and with other organizations, the improve the cancer experience. Helpline addresses some of callers’ most critical needs. Examples The Cancer Support Helpline is of this include a new referral possible thanks to sponsorship partnership with Fight Colorectal Cancer and the from Amgen Oncology, Bristol-Myers Squibb, Eisai transportation assistance collaboration described in Inc., Genentech Inc. and Pfizer, and partnerships with this report. An ongoing relationship with the American APOS, Fight Colorectal Cancer and Joe’s House.

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07337A.indd 8 8/9/16 5:35 PM Reaching Those in Distress Easing the Burden of Never has there been a more critical time for people Transportation Costs with cancer to have tools to help identify and reduce the distress that cancer brings to their lives. For this reason, The cost of cancer care can be the Cancer Support Community developed and licenses to overwhelming. Hidden costs, such as hospitals Cancer Support Source®, an easy to use, 15-25 item transportation to and from treatment, computerized distress screening tool to help people with add burden and are not covered by cancer identify areas of concern and receive personalized, insurance. In response to this need, tailored referrals to information and support resources. the Cancer Support Community, in In 2015, the American College of Surgeons Commission partnership with the Lung Cancer on Cancer adopted distress screening as a newly required Alliance, introduced a Transportation standard for its 1,400+ -accredited institutions. Assistance Grant (TAG) program for people in active treatment for metastatic In addition, distress screening, referral and follow-up have lung cancer. Eligible individuals receive become an integral part of CSC programming across the a gas card to help offset the cost of Afﬁliate Network and through the Cancer Support Helpline. treatment-related travel. In 2015, CSC New patients beneﬁt from this highly personalized approach provided 375 gas cards and connected to help them create a personal support care plan to reduce participants to valuable counseling and distress. In 2015, thousands of people completed distress referral services. screenings and custom support care plans. Research is underway to develop a computerized distress screening for This partnership is possible thanks to the caregivers and, thanks to a partnership with the National support of Bristol-Myers Squibb. Institutes of Health, a computerized distress screening game for children and teens with cancer. Teaching Self- Advocacy in Treatment Decision-Making As cancer treatment becomes more complicated and personalized, people at any stage of their cancer experience may feel unprepared to make critical treatment decisions. The Cancer Support Community’s Open to Options® program offers a powerful tool to help people with cancer organize their thoughts and communicate their unique goals for treatment with their health care team. Participants report feeling more engaged in the treatment decision-making process, and both patients and physicians say that appointments are more focused on the major issues driving these

Participants of a support group at Gilda’s Club Chicago ﬁnd ways to relax and de-stress. important decisions.

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07337A.indd 9 8/9/16 5:35 PM Partnering with Hospitals to Expand our Reach The Cancer Support Community establishes formal partnerships with health care providers around the OSF Saint Francis Medical Center proudly country to ensure that high-quality opened their red doors in 2015. cancer support and education reaches more people touched by cancer. By The Cancer licensing the CSC program model Support to hospitals, cancer centers and, for the first time this year, federally- Community qualified health centers, CSC programming is now available to at Whitman people affected by cancer who might Walker Health not otherwise find the support and information they need. In 2015, the Cancer Support Greenville Health System, CSC’s inaugural Community at Whitman This cost-effective, evidence-based psychosocial support program is fast hospital partnership, has proudly welcomed Walker Health opened its patients and their loved ones through its red red door in Washington and efficient to implement. In order to doors since 2012. D.C., becoming CSC’s assure program quality, CSC provides first partnership with ongoing training and technical a federally qualified assistance to partner organization health center. Patients at staff, so that they are able to: Whitman Walker Health • Provide high-impact, evidence- can now attend CSC’s free based support programs to people support groups and have affected by cancer within the walls access to much-needed of their own institution; information and resources. • Deliver an evidence-based model This partnership was for patient-centered care; and commemorated through a • Meet and exceed emerging launch event at Whitman standards from accrediting bodies Walker Health in August. like the American College of Surgeons, Commission on Cancer. At the celebration of their opening in October, the Cancer Support Community at Presbyterian CANCER SUPPORT COMMUNITY Healthcare Services got off to a fun start! HOSPITAL PARTNERS: Greenville Health System, Greenville, South Carolina Monmouth Medical Center, Monmouth County, New Jersey Monmouth Medical Center Southern Campus, Ocean County, New Jersey OSF Saint Francis Medical Center, Peoria, Illinois Presbyterian Kaseman Hospital, Albuquerque, New Mexico UF Health Cancer Center at Orlando Health, Orlando, Florida UF Health Cancer Center at Orlando Health Whitman-Walker Health, Washington, D.C. commemorated the 1st anniversary of their opening with a cake and party!

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07337A.indd 10 8/9/16 5:35 PM Many Voices Share One Vision In November, staff and leadership from the Cancer Support Community’s Affiliates gathered in Washington, D.C. for “Many Voices, One Vision,” the 2015 annual Affiliate Leadership Conference. Participants from the United States and Canada met for one week to discuss best practices, learn new ways to meet the needs of people touched by cancer and hear from acclaimed speakers and visionaries. Winners of the 2015 “Affiliate of Distinction” were recognized at the conference for their exceptional service. They serve as models for other CSC Affiliates. Congratulations to the 2015 winners: • Cancer Support Community Atlanta • Cancer Support Community Greater Lehigh Valley • Cancer Support Community Greater Philadelphia • Gilda’s Club Louisville • Gilda’s Club Madison In 2015, we traveled to Japan to celebrate a very important milestone—the 15th anniversary of the opening of the Cancer Support Community Japan. The 2015 Affiliate Leadership Conference was supported by Amgen Oncology, Astellas Pharma US, Inc., AstraZeneca, Bristol-Myers Squibb, Celgene Corporation, Eisai Inc., Genentech Inc., Greenville Health Systems Cancer Institute, Incyte Corporation, Janssen and Pharmacyclics, Inc., Lilly Oncology, Medivation, Myriad Genetics Inc., PhRMA and Takeda Oncology.

World Boxing Association middleweight world champion and cancer survivor Daniel Jacobs taught children at a kid’s camp at the Cancer Support Community Greater Philadelphia what it means to be a ﬁghter.

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07337A.indd 11 8/9/16 5:35 PM “You can feel really alone when you’re diagnosed with cancer and going through treatment. Support is incredible. For me to be able to reach out to others going through a similar situation, and support and encourage them is very important to me.” —Donna, living with melanoma

Redeﬁning the Cancer Experience Through EDUCATION

Another new Frankly Speaking About Cancer effort Frankly Speaking About Cancer highlights clinical trials. Clinical trials are critical to The Cancer Support Community’s popular Frankly advancing cancer research, yet only 3–4 percent of eligible Speaking About Cancer programs address timely patients participate. CSC’s new Frankly Speaking About issues of importance to patients and families. 2015 Cancer Clinical Trials program builds on research done was no exception, as patients through the Cancer Experience Registry and and caregivers convened in focuses on raising awareness of clinical trials Philadelphia for CSC’s Melanoma and communicating the importance of research Patient Advocate Summit. The and its impact on outcomes at both a personal summit focused on educating and societal level. This program features in- participants on the risk of person workshops, webinars, videos, a photo recurrence, exploring the meaning narrative, fact sheets and online content. of survivorship in the face of this risk and discussing tools and The Cancer Support Community’s education resources to help manage the and outreach programs are possible thanks social and emotional impact of to generous support from Amgen Oncology, cancer. A training component focused on how to advocate AstraZeneca, BioMarin, Bristol-Myers Squibb, Celgene for one’s self and others. The sessions were ﬁlmed and Corporation, Karyopharm, Lilly Oncology, MedImmune, participants’ stories are featured throughout CSC’s Merck Oncology, Morphotek Inc., Novartis Oncology, Frankly Speaking About Cancer: Melanoma program. Pﬁzer Oncology and TESARO Inc.

Participants from all over the country convened in Philadelphia, PA for the ﬁrst-ever Melanoma Patient Advocate Summit. Thank you to all who joined us!

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07337A.indd 12 8/9/16 5:35 PM Shining the Light on a Rare Radio Show Empowers Diagnosis: MPN Listeners to Live Well Meg had never met anyone with Myeloproliferative with Cancer neoplasms (MPN) before she attended one of the Cancer Support Community’s eight Shining the Light on MPN 2015 Every Tuesday, thousands events. The day featured a physician update and a discussion of listeners tune in to of the importance of diet and exercise to living well with an VoiceAmerica to catch MPN. The highlight for Meg was connecting with others Frankly Speaking About Cancer, CSC’s digital with MPN who could understand her experience. radio show. In 2015, the show featured authors, health care professionals, ﬁlmmakers, scientists, In conjunction with these television personalities and everyday heroes events, CSC produced a who shared fascinating stories, helpful tips Frankly Speaking About for living with cancer and information on the Cancer fact sheet on latest innovations in cancer treatment. Popular polycythemia vera (a type of Members of the Cancer Support segments included: MPN) and a Frankly Speaking Community Atlanta are “Shining the Light on MPNs” at their MPN • Patients Raise Their Voices: Joan Lunden and About Cancer radio show Awareness event to support episode on living with MPN. people living with rare cancers. Amy Berman Veteran broadcaster Joan Lunden and Amy Thanks to Incyte Berman of the John A. Hartford Foundation Corporation for making share their inspiring stories to convey the true this program possible. meaning of patient empowerment.

• Innovation Happens: A Conversation with Jack Andraka At age 15, Jack Andraka invented an inexpensive early detection test for Find Us Online: New Web- pancreatic, ovarian and lung cancers. Today Based Resources this teen is internationally recognized for his role in redefining the cancer experience. More people than ever before share and receive health information using digital technology. Smartphones, tablets, • Cancer: The Emperor of All Maladies e-readers and computers provide almost instantaneous Based on the award-winning book, Cancer: access to a wealth of content. A diagnosis of cancer can send The Emperor of All Maladies is a three-part PBS many people running to the internet, yet the information documentary that combines history, science they find varies tremendously in quality and accuracy. The and personal stories. Executive Producer Ken Cancer Support Community’s webinars, video vignettes, Burns and Director Barak Goodman take internet radio show and tweet chats address this gap, listeners inside this critically-acclaimed film. providing people with high-quality, up-to-date medical and psychosocial information. CSC increased its digital efforts Frankly Speaking About Cancer is available on in 2015 and will continue to do so in the coming months VoiceAmerica, audioBoom, Blog Talk Radio, and years, to help ensure that reliable, current cancer iTunes as a downloadable podcast and online at information reaches and helps more people. cancersupportcommunity.org/radio. Webinars were an especially exciting focus of the past Frankly Speaking About Cancer is made year. These internet-based presentations address concerns possible through generous support from raised at past Frankly Speaking About Cancer® programs and Amgen Oncology, Astellas Pharma US, Inc., through CSC’s Cancer Experience Registry. Recent webinars AstraZeneca, Bristol-Myers Squibb, Celgene addressed nutrition, coping with treatment side effects, Corporation, Eisai Inc., Incyte Corporation, balancing work and cancer, managing costs and advances Janssen Pharmaceuticals and Pharmacyclics in research, among other topics. All webinars and digital Inc., Lilly Oncology, Medivation Inc., Myriad materials are recorded and available on the CSC website. Genetics Inc., PhRMA and Takeda Oncology.

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07337A.indd 13 8/9/16 5:35 PM “As a two-time cancer survivor, I enjoy working as an advocate in any way possible to bring awareness and comfort to anyone affected by this disease. The Cancer Support Community gives survivors a chance to tell their stories in their own words. By allowing us to speak out, it gives us a great sense of empowerment and control that we have a voice and in our care and in policies that could effect our treatment. Everyone I have met through Cancer Support Community has been so wonderful and committed to making sure no one faces cancer alone! They truly see their work as a calling. I love this organization!” —Julie Klein, author of My Healthcare is Killing Me

Redeﬁning the Cancer Experience Through ADVOCACY Making Our Voices Heard 2015 was a meaningful year for the Cancer Policy Institute at the Cancer Support Community. Focusing on the core tenets of the Cancer Policy Institute—access to care for all patients, quality as a central theme and research as a critical priority—CSC elevates the patient voice and builds skills and awareness across our organization, the Afﬁliate Network, on Capitol Hill and with individuals and partner organizations within the cancer advocacy community.

to report on survey findings and screen a documentary Understanding Barriers to film highlighting disparities in access to care. The survey Cancer Care findings identify gaps in care and stress the need for education on the availability of psychosocial care. High-quality cancer care depends on the ability to find, travel to and pay for needed treatments and support Key findings include: services. This year, the Cancer Support Community gathered information on individual experiences accessing • 70 percent of patients did not receive social or care in order to understand barriers to care and better emotional support services. Half of those did not advocate for and support patient needs. know that these services existed. • Nearly 50 percent of respondents reported paying CSC explored the impact more for health care over the past 12 months. of the first full year of the • Out-of-pocket medical costs remain a top concern Affordable Care Act on for many. peoples’ lives by surveying patients on a range of The results of the study were sent to all major U.S. topics including satisfaction health insurers to consider as they update their with insurance, access to benefits packages. More information can be found at: providers and concerns cancersupportcommunity.org/cancer-policy-institute-events. Lee Tomlinson, a participant about cost. An educational in the Access to Care study, event hosted by the Thank you to project sponsors Amgen Oncology, Bristol- shared his story at our forum in Cancer Policy Institute in Myers Squibb, Genentech Inc., Lilly Oncology, Janssen, Washington D.C. March provided a forum and Novartis Oncology.

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07337A.indd 14 8/9/16 5:35 PM Using Data to Inform Policy: Get Involved: Join the Defining Value Grassroots Advocacy “What does value mean to me?” A Cancer Support Network Community (CSC) initiative explores the idea, meaning and impact of “value” in health care. As novel therapies The Cancer Support Community’s Grassroots transform length and quality of life for many, questions Advocacy Network brings together committed about financing and approaches to care emerge. Value individuals to advocate for improved cancer care contributes to treatment decision-making for both at the federal, state and local level. The Cancer patients and health care providers. To better understand Policy Institute partners with advocates from the issue, CSC asked 769 people living with metastatic CSC Affiliates and Grassroots members to help breast cancer how they define value. people with cancer make their voices heard and work to ensure that everyone has access to The study results show that value has many meanings, comprehensive, quality care. and that patients define value differently than policymakers might expect. Less than 5.46 percent In 2015, more than 1,000 Grassroots members of those surveyed saw value as having an economic participated in meetings, events and trainings on meaning specific to health. When defining value in topics such as prior authorization, funding for the health care, approximately 38 percent of patients thought National Institutes of Health and comprehensive care of value in terms of a personal value, emphasizing the as a part of the 21st Century Cures Act and the Senate importance of their relationship with their health care Report on Innovations for Healthier Americans. team rather than the benefits of cost-effective treatment. While quality, efficiency and cost transparency are A new series of webinars armed members with all essential components of high-quality health care, the knowledge and tools to be effective advocates. patients may be more focused on the quality of the Titles include: Grassroots Advocacy 101, Creating doctor–patient relationship than on value related to Access for Patients at the State Level, Creating Access for efficiency or cost. Patients at the Federal Level and The Cancer Insurance Checklist. Special thanks to sponsors Bristol-Myers The findings from this study emphasize the ways in Squibb and Novartis Oncology for their support of which patients are redefining their cancer experience these webinars. Archived versions of webinars can and making decisions about their care. To learn more be found at: www.cancersupportcommunity.org/ about these findings and what they mean, visit online-training, and to join the Grassroots Advocacy cancersupportcommunity.org/presentations/value. Network, please visit cscadvocate.org.

Working With Regulators: Focus on the FDA A September meeting brought together members of the recognize common goals and develop better ways cancer advocacy community and representatives of the to work together to improve health care for all. Visit Food and Drug Administration to better understand how http://www.cancersupportcommunity.org/events/ to effectively work together. Expert panelists included working-regulators-focus-fda for more information on key leaders in the FDA, scholars from universities this program or to download the tool kit for advocates. and leading health advocates. The robust conversation touched on topics related to the organization, roles CSC would like to thank our partners for this event, and responsibilities of the FDA, mechanisms for the American Cancer Society Cancer Action Network, faster approval of new therapies and opportunities for COPD Foundation, Friends of Cancer Research, advocacy. Case studies highlighted past collaborations National Alliance on Mental Illness, National between the FDA and the advocacy community. Organization for Rare Disorders, National Patient Advocate Foundation and the Society for Women’s Meetings such as this one provide an opportunity for Health Research, as well as our event sponsor, advocates and policymakers to learn from each other, GlaxoSmithKline.

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07337A.indd 15 8/9/16 5:35 PM It Takes a Team The Cancer Policy Institute at the Cancer Support Community is proud to collaborate with the following partners on key initiatives:

• Alliance for Quality Psychosocial Care • Alliance for a Stronger FDA Linda House, President, Cancer Support Community; Jill Durovsik, Board Chair, Cancer Support • American College of Surgeons Community; Congressman Steny Hoyer; Libby Mullin, Senior Policy Advisor, Cancer Support Community; Kim Thiboldeaux, CEO, Cancer Support Community. Commission • C-Change • Cancer Insurance Checklist Coalition • Cancer Innovation Coalition/ Bringing the Patient Voice Innovation Working Group to Washington • Cancer Leadership Council • Center for American Progress In 2015, the Cancer Policy Institute team informed, educated and advanced Oncology Bundled Payment the thinking of policymakers on issues important to people touched Consortium by cancer. Priorities included comprehensive high-quality health care, • Coverage Counts access to appropriate treatments, the need to incorporate psychosocial • Global Access Project distress screening and supportive care into clinical trial protocols and the • Immuno-Oncology Valuation Policy importance of the patient voice in value, among others. Advisory Group • Institute for Clinical Immuno- Oncology Advisory Board • National Cancer Policy Forum • One Voice Against Cancer • Partnership for Part D Access • Partnership to Improve Patient Care (PIPC) Coalition • Patients Equal Access Coalition • Patient Quality of Life Coalition • Regulatory Education and Action for Patients Wendy Wigger (far left) meeting with Congressman Fred Upton Congressman Dave Loebsack (far right), Congresswoman Diana DeGette (3rd from the left), (left) and Melissa Wright (right) • Research!America and other patient advocates in Kalamazoo. at Gilda’s Club Quad Cities. • State Patients Equal Access Coalition

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07337A.indd 16 8/9/16 5:35 PM Checklist Helps Patients Shop for Care

The Cancer Policy Institute is proud to lead a coalition CSC would like to thank Novartis Oncology for their of 19 advocacy partners to deliver the Cancer Insurance generous support of the Cancer Insurance Checklist and Checklist (CIC) to people living with or at risk for the partner organizations for their collaboration. cancer. The 2015 update and re-launch included THANK YOU TO THE CANCER POLICY English and Spanish versions of this valuable tool. INSTITUTE’S 2015 SPONSORS The checklist helps people make informed decisions Amgen Oncology Janssen Oncology about their health care and shop for insurance in the Avalere Health Lilly Oncology state insurance exchanges. Since its initial release in Bristol-Myers Squibb Merck & Co Inc. 2013, CIC has been downloaded and distributed at Celgene Corporation Novartis Oncology Eisai Inc. Pﬁzer Oncology least 60,000 times to ensure that more people with Genentech Inc. Pharmacyclics, Inc. cancer or a history of cancer have the coverage they GlaxoSmithKline Takeda Oncology need. Incyte Corporation

THANK YOU to the Cancer Policy Institute Advisory Board The Cancer Policy Institute beneﬁts from the active participation of an expert advisory board that provides substantial advice and guidance on effective cancer advocacy strategies. The advisory board members are:

• Jeff Allen, PhD • Pamela Greenberg, MPP • C. Daniel Mullins, PhD • Lauren G. Barnes • Niraj Gupta, MD • Sharyl J. Nass, PhD • Jeff Belkora, PhD • Fauzea Hussain, MPH • Mark O’Rourke, MD • Linda J. Blumberg, PhD • Diana D. Jeffery, PhD • Michael Paese • Caroline Brown • Lovell A. Jones, PhD, FHDR • Dylan H. Roby, PhD • Mary Beth Donahue • Deborah Kamin, RN, PhD • Lisa Simpson, MB, BCh, MPH, FAAP • Stephen Edge, MD, FACS • Michele McCorkle, RN, MSN • Daniel E. Smith, JD

ANNUAL REPORT 2015 17

07337A.indd 17 8/9/16 5:35 PM “I was recently diagnosed with cancer at age 39. I’m still in the works of getting a deﬁnite primary diagnosis but the doctors are leaning towards a rare sweat gland cancer. I have had two surgeries on my face since September and have been through such an emotional roller coaster. I came across this page during the month and saved your phone number for when I would need to call. Last night was that time. I called and spoke to Carol who was AMAZING! She listened with a caring ear to my story and provided me with resources and phone numbers for support. She made me feel at ease when we spoke and offered encouraging words. I just wanted to say ‘Thank you’ for offering a service to people who need help! And a special THANK YOU to Carol who was simply amazing when I needed someone to talk to!” —Amy Marchany-Brown, CSC Facebook follower Redeﬁning the Cancer Experience Through COMMUNITY

have access to educational support services across the Breakaway from Cancer continuum of the cancer journey.

Celebrates 10 Years Highlights of the year included the Amgen Tour of For the tenth consecutive year, the Cancer Support California and the Dempsey Challenge in Lewiston, Community was proud to be a partner of Breakaway Maine. Held in May, the annual Amgen Tour of California from Cancer, a national initiative founded by Amgen is America’s largest cycling race. Thousands of patients, Oncology in 2005. Breakaway from Cancer aims to caregivers, family members and friends received valuable raise awareness of the many vital resources available information, support and resources at the event’s Lifestyle to people affected by cancer. In addition to CSC, this Festival. A second athletic event brought BFC partners partnership includes the National Coalition for Cancer together again in October. Maine’s Dempsey Challenge is Survivorship, the Patient Advocate Foundation and a run/walk/cycle fundraising experience, which includes the Prevent Cancer Foundation. a weekend of wellness activities to Together, these four groups reach beneﬁt the local community. millions of patients and family members through events, media We look forward to continuing this coverage, internet exposure and collaboration with Amgen Oncol- professional meetings, ensuring ogy and the Breakaway from Cancer that all people touched by cancer team for many years to come.

18 CANCER SUPPORT COMMUNITY

07337A.indd 18 8/9/16 5:35 PM Spring Celebration THANK YOU TO OUR Honors Cancer Heroes GENEROUS CHAIRS AND The Cancer Support Community’s annual BENEFIT COMMITTEE FOR spring celebration celebrates heroes in the A MEMORABLE EVENING. cancer community while raising vital funds Nick & Heather Baker, Co-Chairs Bruce & Bonnie Edelen, C0-Chairs to advance CSC’s mission. The 2015 event Dr. Jeffrey & Sherrie Scott, Co-Chairs introduced the “I am” campaign and featured William Ashbaugh remarks from special guest Lee Tomlinson Lauren Barnes David Barrett & Kira Kohrherr and the presentation of four awards honoring Founders Award winner Dr. Gluck poses with Lynne & Bill Bermont Harold and Harriet Benjamin, founders of The his wife Diane Gluck and Diane Perlmutter. Joanna Bull Wellness Community, and Joanna Bull, founder Harry & April Davidow Jill & Thomas Durovsik of Gilda’s Club Worldwide. Michael Goddard & Shane Hoffman Mitch & Sue Golant Founders Award for Spirit recipient Daniel Jimmy & Amy Haber Jacobs started boxing at 15, rising to become an Colonel Jack & Sue Jacobs alternate for the 2008 Olympic team. His 2011 Jim Kaltenbach Paula J. Malone, PhD diagnosis with osteosarcoma caused partial Rakesh Marwah, MD paralysis of his legs and damaged nerves in his George & Crissy Maynard spine. He returned to boxing after treatment, Diane F. Perlmutter Alysia Reiner & David Alan Basche becoming the 2014 WBA middleweight Andrew L. Sandler champion and first cancer survivor to win a Lois Savage world championship in boxing. Chuck & Julie Geisen Scheper Kim Thiboldeaux The Founders Award for Leadership honored Director Barak Goodman displays his Holly Tyson Founders Award with host Jack Ford. Tom & Lynn Wallace South Carolina’s Greenville Health System Gene Wilder Cancer Institute and its medical director, Michael Zilligen W. Larry Gluck, MD. Under Dr. Gluck’s Alan & Robin Zweibel leadership, the institute established the Center AND THANK YOU TO for Integrative Oncology and Survivorship, OUR EVENT SPONSORS: featuring a first-in-the-nation partnership with ABM Industries Incorporated CSC to offer social and emotional support in a AEG Global Partnerships hospital setting. Amgen Oncology Astellas Pharma US, Inc. AstraZeneca The Founders Award for Innovation celebrated Avalere Health LLC the contributions of Lilly Oncology, a global Lauren Barnes leader in cancer drug development, disease The Brink’s Company management, philanthropy and volunteerism. Bristol Myers Squibb BuckleySandler LLP Celgene Corporation Accepting the Founders Award for Empowerment Broadway star Lindsay Mendez wowed the crowd with stunning performances Jill and Thomas Durovsik was Emmy Award-winning director Barak throughout the evening. Eisai Inc. Goodman on behalf of Ken Burns Presents Cancer: Genentech Inc. Gilead Sciences, Inc. The Emperor of All Maladies. Based on the Pulitzer Greenville Health System Cancer Prize-winning book, this three-part PBS film series Institute combines historical narrative, personal stories and Incyte Corporation breakthrough discoveries. Janssen and Pharmacyclics, Inc. Lilly Oncology Medivation, Inc. Attendees heard from special guest Lee Merck & Co., Inc. Tomlinson, a successful executive, author and Myriad Genetics public speaker. As a stage III cancer survivor Novartis Oncology Ogilvy CommonHealth Worldwide and direct recipient of non-compassionate care, Diane F. Perlmutter Lee devotes his life to inspiring health care PhRMA professionals to provide high-quality service to Pfizer Oncology all patients, all the time. Chuck and Julie Geisen Scheper Takeda Oncology Teva Oncology

ANNUAL REPORT 2015 19

07337A.indd 19 8/9/16 5:35 PM I AM A…Campaign Everyone has a connection to cancer, and the Cancer Support Community (CSC) is here to help. The 2015 “I am a” campaign brought this message to thousands through an awareness effort made possible by EHE International’s donation of a prominent Manhattan display window. For the month of July, a window at 10 Rockefeller Plaza highlighted CSC’s services and everyone’s connection to cancer, reaching more than 250,000 people per day. A parallel campaign encouraged people across the country to share their connection to cancer on social media. The Rockefeller Center window featured the words, “Everyone knows someone touched by cancer. I am a…” An LCD screen displayed a scrolling list of endings to “I am a…” to reinforce the message that no one should face cancer alone. This campaign ﬁrst debuted at CSC’s Spring Celebration in April where guests could pose beneath an “I am a…” sign, holding a card describing their connection to cancer. From patient to survivor to caregiver, this campaign serves as a reminder that cancer affects everyone, not just the person diagnosed, and communities of support exist for all. CSC is grateful to EHE International for the opportunity to reach so many people who might need and not otherwise be aware of these resources.

Team CSC: Changing the Lives of People Touched by Cancer, 1 Mile at a Time This past fall, the Cancer Support Community and services, a portion of which was given to partnered with Events DC Nation’s Triathlon for our Whitman Walker Health. For information on 1st annual Team CSC event. The 12 triathletes on how to join or support the 2016 Team CSC, visit the CSC team dedicated their training, spirit and cancersupportcommunity.org/join-team-csc-2016. fundraising to support families affected by cancer so that no one faces cancer alone. Through their Thank you to the Go Mitch Go Foundation for tireless efforts, Team CSC surpassed its fundraising supporting Team CSC. goal, raising more than $18,000 for CSC programs

20 CANCER SUPPORT COMMUNITY

07337A.indd 20 8/9/16 5:35 PM Cancer Support Community Donor Spotlight: Joel Kent While brainstorming over a bowl of M&M’s during the founding moments of Gilda’s Club Young Leadership Council (YLC) in 2006, Joel realized two very important things: cancer affects everyone in some way, and while time and money spent on medical research are critical, individuals still need social and emotional support. Whether dealing with cancer themselves or watching a family member or friend go through treatment, everyone needs a person to talk to, a place to go for information, or sometimes just a shoulder to cry on. “I remember that Gilda’s Club was so connected to the human element of cancer that they consciously had a box of tissues in every room. Something as simple as that gets right to the heart of the emotional side of cancer. Tears will be shed, battles will be fought, but minimized what I was trying to do and put the spotlight there is an entire support network available to those on why I was doing it.” Three marathons later Joel still in need. The Cancer Support Community continues runs hard and supports his mother as she continues to to drive this vision forward today, and it has been an fight her much more challenging race against cancer. organization that Meredith and I are honored to be connected with.” Joel and Meredith Kent have been active and vocal supporters of the Cancer Support Community mission Over the years Joel has spread the message of CSC by for the past decade. In 2013 the Cancer Support serving on numerous benefit committees with his wife Community honored Joel, along with other founding Meredith, as a member of CSC’s President Council and members of the YLC, with the Founders Award for most recently, in 2016, running the Chicago Marathon Leadership. Currently, Joel is Head of Americas to raise awareness for CSC’s mission. In 2013, Joel Credit Derivatives Trading at Credit Suisse in New decided to run the Boston Marathon to benefit the York. Meredith spends much of her time raising their Dana Farber Cancer Institute. As he embarked on his two wonderful children in Westchester, where she is 4 months of training he thought the money raised and Treasurer of both the elementary school’s PTA and miles run would bring assistance and inspiration to Westchester Reform Temple’s Chapter of Women of those fighting cancer. Little did he realize that during Reform Judaism. the time of his preparation his own mother would be diagnosed with colon cancer. “Everyone, in some way, The Cancer Support Community would like to thank is connected to cancer. Having my mom’s diagnosis Joel and Meredith for their continued and tireless coincide with the goal of trying to run 26.2 miles support of CSC’s mission.

Thank you to our 2015 Team CSC Athletes: Karen Foer Donna Neale David Kass Maggie Prieto Charlotte Kramer Lisa Slater Courtenay Labson Anna Stewart David MacLaury Lori and Martin Libby Mullin Weinstein

ANNUAL REPORT 2015 21

07337A.indd 21 8/9/16 5:35 PM With Special Thanks!

BOARD OF DIRECTORS Mitch Golant Luigi Grassi, MD George W. Sledge, Jr. MD Rob Goldsmith Cancer Support Community, Professor and Chair of Psychiatry Professor, and Chief, Division of Director, Policy and Advocacy Jill Durovsik, Chair Consultant University of Ferrara, Department Oncology Research & Training Institute, Chair Los Angeles, CA of Medical Sciences of Stanford University Medical Center Maria Gonzalo Communication and Behaviour Stanford, CA Manager, Policy and Advocacy Stuart Arbuckle Lynn Hanessian Ferrara, Italy Vertex Pharmaceuticals Inc. Edelman David Spiegel, MD Jennifer Griola Chicago, IL Jimmie C. Holland, MD Jack, Sam and Lulu Willson William J. Ashbaugh Wayne E. Chapman Chair in Professor Senior Director, Development Retired Cherié M. Hulliade Psychiatric Oncology Associate Chair, Department of Tanisha Haltiwanger Colliers International Attending Psychiatrist Psychiatry & Behavioral Sciences David C. Ashworth Walnut Creek, CA Memorial Sloan-Kettering Cancer Stanford University School of Manager, Administrative Support DCAshworth Consulting Center Medicine Joel S. Kent New York, NY Stanford, CA Linda House, MSM, BSN, RN Nick Baker Credit Suisse President AEG Global Partnerships New York, NY Paul Jacobsen, PhD Alan D. Valentine, MD Associate Center Director, Division Department Chair, Department of Jamese Johnson, MPH, CPH Lauren G. Barnes, Secretary Albert ‘Nick’ Masi Jr., PhD of Population Science Psychiatry Coordinator, Research Vertex Pharmaceuticals Joe Dimaggio Children’s Hospital, H. Lee Moffitt Cancer Center and University of Texas, M.D. Anderson Retired Research Institute Cancer Center Kelly Kamp, MA Harry B. Davidow Tampa, FL Fort Lauderdale, FL Houston, TX Coordinator, Communications Retired Matthew Loscalzo, LCSW Deane Wolcott, MD Diane F. Perlmutter Vicki Kennedy, LCSW Don Elsey Gilda’s Club Worldwide, Retired Executive Director, Supportive Care Director, Oncology Supportive Senseonics, Inc. Vice President, Program Landrum, SC Medicine Care Services Administrative Director, Sheri and Samuel Oschin Comprehensive Development and Delivery Kelly Harris, MSS, LCSW, ACSW Jane Rollinson Les Biller Patient and Family Cancer Institute at Cedars-Sinai Cancer Support Community Greater My Criterion Resource Center Medical Center Jay Lockaby, MSS, MLSP Philadelphia Jacksonville, FL City of Hope Los Angeles, CA Senior Vice President, Affiliate Duarte, CA Relations and Strategic Growth Fauzea Hussain, MPH Charles Rose Jim Zabora, ScD, MSW Avalere Health Karr Barth Associates John Marshall, MD Falls Church, VA Chris Lockett Professor of Oncology Bala Cynwyd, PA Executive Vice President, Mission Charlotte Jensen-Murphy Chief, Division of Hematology/ DC LEADERSHIP COUNCIL Delivery ABM Tameka N. Simmons Oncology Associate Director, Clinical Paula J. Malone, PhD Independent Consultant Rujul Desai Emily Martin Washington, DC Research Retired Director, Communications Lombardi Comprehensive Cancer Sara Dube Dana Thompson Center Michael M. Paese Kayla Miller Podesta Group Georgetown University Tim Dube Goldman Sachs Washington, DC Washington, D.C. Coordinator, Research Nisha Jain Raymond Sacchetti Jack A. Wickens Pearl Moore, RN, MN, FAAN Peterson Njamunge RDS BioPharm Consulting, LLC (Retired CEO) UnitedHealthcare, Retired Hillary Kleiner Coordinator, Programs and Services Oncology Nursing Society, the ONS Keswick, VA Andrew Sandler, Vice-Chair Foundation, the Oncology Kassie Lewis Christina Raia BuckleySandler, LLP Nursing Certification Corporation, Director, Development PROFESSIONAL ADVISORY and Oncology Leslie Rivera Quiroz Kenneth Scalet BOARD Education Services, Inc. Lynn Ryker Healthcare Consultant Pittsburgh, PA Tameka Simmons Director, Network Applications and Archie Bleyer, MD Charles R. Scheper Technologies Medical Advisor Herbert Pardes, MD Bexion Pharmaceuticals Executive Vice Chair, Board of CANCER SUPPORT St. Charles Regional Cancer Center Trustees, New York COMMUNITY STAFF Kristen Cox Santiago Bend, OR Renata Sledge Presbyterian Hospital Kim Thiboldeaux Senior Director, Policy and Cancer Support Community of Barry Bultz, PhD New York, NY Advocacy Greater St. Louis Chief Executive Officer Director, Department of Lidia Schapira, MD Psychosocial Resources Claire Saxton Holly Tyson, Treasurer Associate Professor, Department of Michael Abdeljabbar Staff Accountant Senior Director, Education and Dick’s Sporting Goods Tom Baker Cancer Centre Medicine Calgary, Alberta, Canada Outreach Harvard Medical School Karen Beiley Tom Wallace Massachusetts General Hospital Director, Administration Eli Lilly & Company Vincent T. DeVita, Jr. MD Cancer Center Jenny Song Professor of Medicine Boston, MA Joanne Buzaglo, PhD Director, Digital and Web Michael Zilligen Yale University School of Medicine New Haven, CT Senior Vice President, Research Ogilvy CommonHealth Specialty Kathryn Schmitz, PhD, MPH and Training Sarah Suettinger Marketing Professor of Epidemiology Manager, Development John R. Eckardt, MD University of Pennsylvania Director, Clinical Research Program Daniela Cracolici Perelman School of Medicine Coordinator, Affiliate Relations Jeff Travers PRESIDENT’S COUNCIL Center for Cancer Care Research Philadelphia, PA St. Louis, MO Executive Vice President, Finance Jami Fancher and Administration Bill Bermont Karolynn Siegel, PhD Coordinator, Development Credit Suisse Kathleen M. Foley, MD Professor of Sociomedical Sciences, New York, NY Chair, The Society of Memorial Mailman School of Public Health Brittany Gallagher Sarah Vammen, MPS Sloan-Kettering Cancer Center Professor of Social Work, School of Coordinator, Strategic Events Manager, Communications Rujul Desai Memorial Sloan-Kettering Cancer Social Work Avalere Health Center Columbia University Sara Goldberger, LCSW-R Alexander Zaleta, PhD Washington, DC New York, NY New York, NY Senior Director, Program Director, Research

22 C ANCER SUPPORT COMMUNITY

07337A.indd 22 8/9/16 5:35 PM 07337A.indd 23 8/9/16 5:35 PM Bill Slater $100 - $249 Thank You to Our 2015 Donors Letitia Snyder Danny & Cindy P Anastasi Spectrum Pharmaceuticals, Anonymous The list below includes gifts and grants received in 2015. The Cancer Support Community Inc. Linda M Asher has done its best to accurately acknowledge each of our valued contributors. If we have Bill and Melissa Stewart Christopher C. Arabia inadvertently omitted or misspelled your name, please let us know. Margaret E. Stone Gloria Aronoff Tamar Thompson Yelena Bakaleva $500,000 and Above Tesaro, Inc. Vicki Kennedy Truist Tim and Estella Barth Amgen Inc. The TJX Foundation Joel and Meredith Kent West-Camp Press, Inc. David Bassein Bristol-Myers Squibb Holly Tyson Benjamin B. Klubes Laura Belgray Celgene Corporation UNC at Chapel Hill Kira Kohrherr $250 - $499 Philip Berman Martine Bernard Pﬁzer, Inc. Charlotte Kramer Anonymous Elizabeth M. Bittarelli $5,000 - $9,999 Mark Krueger Alan and Judith Appelbaum Brandi Brethour $250,000 - $499,999 Lisa and Noam Bardin Mario Lacouture Maureen Ayes The Brooks Group & Genentech, Inc. BioMarin Pharmaceuticals David MacLaury Peter Bach, MD Associates Inc. Paul W. Margiotta Nick and Heather Baker Bruce Brosius $100,000 - $249,999 Combined Federal Campaign Jack Micali Charles and Ivana Baltic Shirley Brown and Henry AstraZeneca Pharmaceuticals Bruce and Bonnie Edelen Tom Bohannon Glenn Miller Salama Bayer HealthCare Goldman Sachs Matching Mary Nell Brandner Michael Paese Dianna Burgess Boehringer Ingelheim Gift Program Mark D. Peters, III CarMax Foundation Pharmaceuticals, Inc. Debbie and Gary Bush James and Amy Haber Margarita Prieto Michael Carroll Eisai, Inc. Joanne Buzaglo Hitter Family Foundation Diane Rich Terri Clevenger GlaxoSmithKline Capella University Inspire Lung Cancer Alliance Sara L. Robards Michael Dimaio Helsinn Therapeutics, Inc. Giving Program Doug Marzonie Raymond Sacchetti Lynn English Lilly Oncology Tony Caver Paul J. Massey Kim Thiboldeaux Melissa Erdelyi Merck & Co. Inc. Jae Chang Diane F. Perlmutter James Tillman Nigel Ferrey Novartis Oncology Julian and C.C. Clauss-Ehlers Ken Scalet and Liz Sadove United Way of Greater Catherine A. Ferrone David Pearlman Sherrie and Jeffrey Scott Linda Costamagna Portland Brian Henze Tom and Lynn Wallace Blythe Danner Jack and Judy Wickens Arthur & Nicole Herbst $50,000 - $99,999 Wellington Management Elizabeth D’Arcy Anthem, Inc. Charitable Fund Michael and Deb DeBerdine Company, LLP $500 - $999 Astellas Pharma US, Inc. Shane Hoffman Dell Direct Giving Campaign ZD Wines Anonymous Gilead Sciences, Inc. Michael Kass Sophie Dickinson Anonymous Janssen Oncology Beth A Lamoreaux Chris Disney $2,500 - $4,999 Dave Baronoff Karyopharm Therapeutics Charlotte Jensen-Murphy Jill Dolgin Lynne and Bill Bermont Ron Bookman Medivation, Inc. Patti Jewell James P Donovan Rujul Desai Jonathan Bornstein PhRMA The Henry W. Bull Russell and Rose Mary Jordan Tim J Dube Dean A. Brainard Taiho Oncology Foundation Maxwell Josephson Marie Duellman Bright Funds Inc. Hirshberg Foundation for Yasmine Kloth Helen Dyer Frank and Mary Condella $25,000 - $49,999 Pancreatic Research Elizabeth Lee-Hood Lance Eaton EMD Serono, Inc. iHeartMedia Bill Connor Kristine E. Lemke Norman Endlich CroppMetCalfe McKesson Foundation Libby Mullin and Kenneth Reid and Nancy Liffman Mark Extein Ferrall Dietrich Myriad Genetic Laboratories, Connolly Lisa and Mitch Livstone Alec W. Farr Drew and Krista Flood Inc. Lisa Slater Pat Herman & Ulla Martz David L. Farwell Keith Friedmann Jefﬂyn Spahr Tim Mayopoulos Janet Ferguson $10,000 - $24,999 Anna and John Stewart Stephen and Judith M. Gregory Fess, Esq. Goodman Susan Merrick ABM Industries, Inc. Syde Hurdus Foundation, Eric Michael Cathy Fink AEG Global Partnerships Inc. Christopher Grohe Karen Foer Cheryl Healton Mark C. Michael Stuart Arbuckle Ilene and Craig Miller Ann H Fowler Mike and Karen Heck Jeffrey Fox William J. Ashbaugh $1,000 - $2,499 Manmath Nayak David C. Ashworth Catherine Arnold Fauzea Hussain Paula R Gaiser Nazareth Academy Grade Avalere Health LLC Adam and Lina Borden K Public Relations Bonnie Gannon School Lauren and Aaron Barnes CBS Radio Inc. Joseph Keenan Vanessa W Gannon Greg and Anne Nickerson The Brink’s Company Stephen Cohen Courtney Labson Judy Ann Gerarde Mary Ellen D. Overend BuckleySandler LLP Ellen Coleman Bruce & Ginny MacLaury Daniel Gilbert Janet Paroly April and Harry Davidow Gwen Darien and Jonathan Brian and Kimberly Manca Sara L. Goldberger Jill and Thomas Durovsik Sibley Nancy M. McGee Ian and Judy Portnoy Rob Goldsmith Genomic Health, Inc. Joan and Robert Easton Julian McKenna Quotable Cards Lulu W Gonella Greenville Hospital System Jon Eckert Lori Melancon Alysia Reiner and David Alan Beth Gregory Jean Hynes R. Don Elsey Cathy Miller Basche Stephanie Haims Kid Support, Inc. Thomas Emerson Roberta Mirisch Daniel R. Riff David A. Harris LiveStrong Foundation Susan and Mitch Golant Donna Naveo Jane and Brad Rollinson Allison Harvey Palo Alto Investors Lynn Hanessian Pour Le Monde Nicholas Seidenberg Carol Ford Hersey Paula Malone Samuel and Diana Harbison Research Advocacy Network Carol Semrad Mark Hester Rakesh Marwah, MD Brenda Hawkes Stephen Roberts John Spickler Mark Hindsley Ogilvy CommonHealth Frank Heitker Michael Rocks Christine C. Thompson Gary Hopkins Worldwide The Hopkins Charitable Fund Nathan Romano Jeff Travers Earl Hunt Andrew L. Sandler Linda S. House Philip W. Ruedi Mary and Adam Tyler IBM Employee Giving Charles and Julie Geisen Interpace Diagnostics Nicholas J. Sarlis, MD Suzanne Ullman Arlene & Bob Ilgenfritz Scheper David Kass Ryah and I. Robert Schwartz, Jeffrey S. Wantman Peter Ilgenfritz Takeda Oncology Meredithe Katz M.D. Zengo Fitness LLC Hisham Ismail

24 CANCER SUPPORT COMMUNITY

07337A.indd 24 8/9/16 5:35 PM Michelle Joubran Carlos A. Prieto Debby Bitticks Mary Beth Kennedy Rick Siegel Caroline A Joyce Francisco Prieto Nancy Boozer Mary Susan Kernan Ellie A. Slater Michael Kabitsch Maria G. Prieto Annette Bowers Sarah Kiernan John C. Slater Alexandra Kane Jithendra Babu Pydimarri Erica Broadus Jane Kim Katie Slater Ritu Kansal Qualcomm, Inc. Paul Brogna Monica King Renata Sledge Adam L. Kaplan Rosa Raia Richard Brown John/Alicia Klaffky Cathy and Don Smith Jennifer Kaplan Sudhakar Rao Deb Brugman Scott and Robin Kleiman Kara Scott Smith Jeffrey Karp Denise Reinke William Bruno Beth Klingensmith Terri Smith Charlene Kass Elizabeth Reiser Syam Buradagunta Jessica Suen Kong Mary Beth Donahue Brian Ridgway Thomas D. Cassel Josh Kwon Shirley & Russell Snider Donald Kent Lynn Ridgway Arlene Chaiken Nhien Le Jenny Song Dennis Kilcullen Mike and Nancy Ridgway The Como Family Carla Leblanc Jenna Stento Jeffrey Kirsch Greg Roller Missy R Cook Kassie Lewis Karen and Keith Stockerl- Karl Klare Stuart Ross Daniel J. Cooney Patricia D Long Goldstein Joe Kleine Shanna E. Rossi Clemens Cox Margaret Longacre Beth and Reed Stvan Steven Klemm Kristin Rowan Shelly Cummings Nathan Lopata Brenda Sue Taylor Heather Russell Koenig Ira H. Russcol Richard Deluga Martha Lane and Robert Mary Ternes Pam Koski Jack Yevgeny Ryan Colin R. Dicke Lucke Joann and Hubert Audrey and Ken Kramer Lynn J. Ryker Jeffrey Dobrinsky Barbara Maas Thiboldeaux Andrew Krantz Salesforce Foundation Bob and Sandie Dunn Charlene MacDonald Wendy Treynor Eileen Kurtz Bonnie Malachin Brenda Sallee Terri Ellisen William Trunk Lisa Lacasse Jolene Sanditen Amanda Elsaesser Anita Maldonado Inna Tsukerman Lisa M LaVoie Elizabeth Sanson John Epting Robin Mansﬁeld Liz B Legg Kristen Cox Santiago Henry L Ettman April Margolin Linda Vick Debra Levin Erica Schaal Nancy and Jeffrey Evelhoch Ed and Barb Mason Eva Vogel Jing Liang Rosalyn Schultz Charles M Feinberg MaryGrace Mastroddi Brooke Watson Elizabeth Lin Harold Seigel Robert G. Finch Kathleen Matthai Demetrius Watson Joe Lobacki Dhiren Shah Maude I. Fish Stephanie McGill Scott A. Weinberg Jay Lockaby Jennifer Sharretts Ina and Jim Fisher Missy and Tom McGuire Jerome Welte Judy Lockaby Bonnie Shaw Heidi L. Flanagan Noeleen McIntyre Lynn and Rick Wexler Kevin Lokay Dana Siekman Regina Franco Carolina Mendez Sandra L. Whitman Erin Loubier Jean Simons Matthew Frazier Lora Meyer Stefanie Wiegand Michael Love Maria Smith Nancy Fremon-Brown Keith Moore Robin Williams Lindsay Luck-Duggan Muriel Snow Gary Friedman Suzanne Nalls Friederike Wolfarth Meghan Mahoney Stacey D. Stewart William L Furmanski Diana L. Ohlbaum Bobby and Jan Wright Shrinath Malur John Strazzabosco Sherry Galloway Marilyn Olchawa Stephanie Manes Katherine and Michael Stultz Meredith Gardner Kristin Olson Michael Zincone Gina Mangiaracina Rhea Suarez Maria Gonzalo and Hubert Jennifer O’Neill Anne K. Zinter Jerry and Evonne Marzouk Sarah and Matt Suettinger Janicki Loralei Osborn Justin Zipser Anne Mazlish Erin Sullivan GoodShop Heather Pankow Casey McCormick Jeanne Beesley and Andy Tao Amanda and Derek Gottlieb Drake Parker In Kind Donors Catherine McCulloch Alan Tubbs Cheryl Grand Bonita Patrick Avalere Health Dyllan McGee Barton Vanderburg Lynne Graves Philadelphia Renaissance Vera Bradley Gregory McKinney Maura Vanderzon Kathryn D Greenberg Faire LLC Bravo TV Mardi Mellon Arturo Vargas Rich and Katy Greenberg Jack Polsky Bryan Cave, LLP Carol A Merkel Kristin Vidile Judith A Greenwood Lisa Populoh Crop Organic Vodka Bo Z. Meunier Lisa and Pope Ward Trey & Suz Goulden Elizabeth Pothier EHE International Ken Meyers Howard Weinberg Segundo & Dorliza Gutierrez Christina Raia Bert H. Esenherz Kelly Harris Mary Redmond Migas Family Kim Weinberg Everlast/Get In The Ring Karen Osler Moran Kimberly Hart Randall Reetz Nicole Weiss Foundation Lisa Morbidelli Lori and Martin Weinstein Micheal Hartman Norman Reiss Farmer’s Organic Gin Patricia Stahl and Chet Rhea Werts Kathryn Hass Elizabeth Rice Morrison Michael Zilligen Auria Hayoun Michael Rohr Golfsmith Barbara Martin Naef Robert B. Helling Kathy Roth-Douquet Cindy Gueli Derick Naef $99 and Under Diane Hewitt Donna and Mark Rubin Cherie Huillade Network for Good Michael Abdeljabbar Keileen Hopps Meredith Ruden Ink48 Hotel Sandy Newman Alicia Abell Tori Hornstein Dorothea Ryan Hollye Jacobs Joan Oberholtzer Lindsey Alico Nancy Horton Roberta Ryan John Wind/Maximal Art David Oren Altemus Family Mary Horton Mark Sable Kiehl’s Michael O’Rear AmazonSmile Foundation Shirley Jean Horton Lily Safani Koerner Kronenfeld Partners, Shanna S. O’Reilly James Amsler Hyam Hosny Paul Salniker LLC Tracey Orloff Anonymous Danny Huben Marcie Sandalow Andy and Dotty Leven Chris Orr Madeline Aron Michael Izquierdo Jacob Sappenﬁeld Lilly Oncology Nazz Paciotti Andrew Arsenault Louise Jennings Amy Saunders Michter’s American Whiskeys Jeffrey M. Panarelli Angel Auyeung Dana Johnston Leslie R. Schover Dana Paumbi Chris Baker JustGive Schwab Fund for Charitable Moore Brothers Wine Stephen J. Phillips Cathleen Beggy Ben Kass Giving Company Benjamin Pitkin Lisa & Rick Beller William Kass Sarah Shea Neocutis Laurel Place Jeremy Ben-Ami Kory D. Keith Beverly Sheldon One Veda Amy Power Maureen Van Besien Amy N Kelly Claire Shipman Judy Stein and David Leto Joe and Jill Presta Jane Betts Lauren Kennedy Julie E. Shroyer Elaine Turner

ANNUAL REPORT 2014 25

07337A.indd 25 8/9/16 5:35 PM Ways to Give The work of the Cancer Support Community CSC Recognition is made possible through your generous contributions, as well as sponsorships and grants from corporations and GuideStar USA, foundations. Unrestricted gifts for general operations offer the greatest Inc.’s mission is flexibility in carrying out our mission. Every gift is important, and there are to revolutionize philanthropy and nonprofit several ways in which to donate: practice by providing information ONLINE, BY MAIL, OR BY PHONE TRIBUTE AND MEMORIAL GIFTS that advances transparency, enables donors to make better To make a donation online, visit our website Use any method to make a gift in honor decisions, and encourages at www.cancersupportcommunity.org and of or in memory of a special person or charitable giving. CSC was click on “Donate.” Online gifts can be made occasion. CSC will acknowledge your honored to earn the GuideStar by credit card, or you can print a form and contribution and notify the honoree or Exchange Gold Participant return it by mail to: family that a tribute or memorial gift has distinction in 2015. This is the Cancer Support Community been made. highest level of participation that 1050 17th Street, NW, Suite 500 a non-profit can achieve through FEDERAL APPEALS Washington, D.C. 20036 the GuideStar exchange and is a (For Government Employees) testament to our organization’s We also welcome the opportunity to speak Federal employees will find the Cancer commitment to data transparency. with you. Please call us at 202-659-9709. Support Community listed as an option in the alphabetical index of the Combined Federal We were honored to again SHOP IN THE CANCER SUPPORT Campaign (CFC). Our CFC number is 11674. be given the highest, 4-star COMMUNITY’S MARKETPLACE rating by Charity Navigator. CSC’s Marketplace offers multiple WORKPLACE GIVING This designation is administered opportunities to purchase unique, one- (Non-Government Employees) based on the combination of the of-a-kind items to raise funds for CSC’s Many companies have giving programs (e.g., programs and services offered and mission. Items include John Wind Maximal United Way) that make donating easy. Please the way in which organizations Art jewelry, customizable Bravelets, Pour le check with your company for information. function financially. Monde perfume and more. CSC also partners STOCK GIFTS The Independent with Goodsearch/GoodShop to turn ordinary Charities Seal of Gifts of stock can be a preferred method for online purchases into an automatic donation Excellence is awarded to for CSC. Visit www.cancersupportcommunity. some making charitable contributions. CSC those organizations which org/shop-csc to shop our Marketplace items provides the information for transferring meet the highest standards and register for Goodsearch/GoodShop. stock to our account. Please call 202-659- of public accountability, program 9709 for additional information. PERSONAL FUNDRAISING effectiveness and cost effectiveness. CARS AND OTHER VEHICLES Of the 1,000,000 charities operating Be part of a passionate community of sup- in the United States today, it is Thinking about selling your car, boat, porters by starting a fundraising campaign, estimated that fewer than 50,000, motorcycle, truck or other vehicle? Donate such as running a marathon, celebrat- or 5 percent, meet or exceed these it to CSC instead. All you need is a clear title ing a birthday or fundraising with your standards, and, of those, fewer than classroom. Start your campaign by visiting and we will take care of the rest, including 2,000 have been awarded this Seal. cancersupportcommunity.org/how-help. pickup, at no cost to you. Once your vehicle We are proud to have received this has been sold, you will be sent a receipt for distinction. VOLUNTEER your tax records, and the sale proceeds will Providing support to all people touched by be donated to CSC in your name. Learn The Cancer Support cancer is at the core of everything CSC does. more about the vehicle donation program Community was Strong and engaged volunteers strengthen by calling 1-877-272-5650 or visiting honored to be named our efforts to ensure that no one faces cancersupportcommunity.org/ways-give. as a Top Nonprofit cancer alone. For volunteer opportunities Organization by Philanthropedia. LEGACY AND PLANNED GIVING visit cancersupportcommunity.org/how- This designation was assigned help/volunteer Leave a generous legacy by designating CSC following a survey of experts in the as a beneficiary in your will. Your attorney field of cancer care who were asked MATCHING GIFTS or tax advisor can provide guidance. If you to rank organizations specifically by Increase your donation with employer match- would like to speak with us about naming their degree of positive impact on ing funds. Please check with your company. CSC as a beneficiary, please call 202-659-9709. people touched by cancer.

07337A.indd 26 8/9/16 5:35 PM Financial Report This statement reﬂects the activities of the Headquarters organization. Across the Network, CSC is a nearly $50 million organization. Consolidated Statement of Activities Statement of Activities, year ended December 31, 2015

TEMPORARILY PERMANENTLY EXPENSES UNRESTRICTED RESTRICTED RESTRICTED TOTAL REVENUES AND OTHER SUPPORT Development Income $ 610,137 – – $ 610,137 Interest Income 64,066 – – 64,066 Unrealized Loss of Investments (116,483) – – (116,483) Service Delivery Program 591,350 693,421 – 1,284,771 Research and Training 334,277 1,267,316 – 1,601,593 Events and Special Initiatives 729,020 – – 729,020 Less Direct Expenses (197,383) – – (197,383) Education/Outreach 510,709 870,809 – 1,381,518 Policy/Advocacy 284,533 972,527 – 1,426,552 Afﬁliate Activities 746,553 – – 746,553 PROGRAMS AND Communications 50,000 – – 50,000 SERVICES In-Kind Revenue 98,580 – – 98,580 Miscellaneous Income 66,331 – – 66,331 85% PPS Sales, Net of Direct Costs of $22,378 247,455 – – 247,455 Net Assets Released from Restriction 5,212,010 (5,212,010) – – Total Revenues and Support $ 9,231,155 $ (1,407,937) – $ 7,823,218

EXPENSES Program Services $ 6,006,349 – – $ 6,006,349 Management and General 402,788 – – 402,788 Fundraising 326,545 – – 326,545 Operating Expenses: PPS 315,203 – – 315,203 Total Expenses $ 7,050,885 – – $ 7,050,885

MANAGEMENT Change in Net Assets $ 2,180,270 $ (1,407,937) – $ 772,333 AND GENERAL Net Assets at Beginning of Year $ 1,962,077 $ 6,759,719 $ 10,000 $ 8,731,796 6% FUNDRAISING Net Assets at End of Year $ 4,142,347 $ 5,351,782 $ 10,000 $ 9,504,129 5%

PATIENT PLANNING SERVICES 4% Cancer Support Community is a 501(c)(3) charitable organization and all donations are tax-deductible to the extent allowed by the law. Every gift to the Cancer Support Community helps us ensure that no one faces cancer alone. We thank you for your generous support.

Patient Planning Services (PPS) is a subsidiary controlled by CSC that licenses certain CSC products and services to hospitals and other external partners.

07337A.indd 27 9/7/16 8:16 AM www.CancerSupportCommunity.org

HEADQUARTERS OFFICE 1050 17th Street, NW, Suite 500, Washington, D.C. 20036 Phone: 202.659.9709 Fax: 202.974.7999 Toll Free: 888.793.9355

NEW YORK CITY OFFICE 165 West 46th Street, Suite 1002 New York, NY 10036 Phone: 917.305.1200 Fax: 212.967.8717

RESEARCH AND TRAINING INSTITUTE 4100 Chamounix Drive, Philadelphia, PA 19131-3724 Phone: 267.295.3000 Fax: 215.882.1580

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