Atlanta, Georgia - The Cancer Support Community (CSC) announced today at the 2017 ASH (American Society of Hematology) Annual Meeting and Exposition the results of a study of chronic lymphocytic leukemia (CLL) survivors as part of its Cancer Experience Registry. The study explores how CLL affects daily life, finances and relationships. It also examines the association between quality of life and CLL course of treatment.

“This study is an important first step into understanding the challenges and concerns specific to CLL patients and the psychosocial consequences of being diagnosed with CLL,” said Linda House, CSC president.

Well over half of respondents (62 percent) indicated that CLL “somewhat to very much” affected their views on life expectancy. Also noted were concerns about quality of life (41 percent), finances (40 percent), ability to work (34 percent), and relationships with friends and family (26 percent).

Over one-fifth (21percent) of CLL survivors reported experiencing substantial levels of anxiety and fatigue as compared to the general US population. Of note, worse anxiety was significantly associated with active treatment, whether it was the first line of therapy or subsequent therapy, even after controlling for the effects of age, gender, education, and income. Interestingly, poorer quality of life outcomes were not related to being in active surveillance (“watch and wait”) treatment.

“These findings highlight the importance of examining changes in quality of life and distress throughout the cancer experience and that psychosocial services, like those offered through CSC, play a vital role in supporting patients and survivors who have these symptoms and concerns,” said Alexandra Zaleta, PhD, CSC Senior Director of Research.

The poster will be formally presented on Saturday, December 9 from 5:30 to 7:30 p.m. at the ASH (American Society of Hematology) Annual Meeting and Exposition. The full poster as presented at the Meeting is available online here.

As research shows more consumers are searching online for health information, this union will deliver innovative digital services for cancer patients.

[Washington, D.C.] – The Cancer Support Community (CSC), an international nonprofit organization, announced today that MyLifeLine, a foundation whose digital platform has been engaged in transforming the experience of cancer patients over the past decade, will join CSC to bring together more than 30,000 patients, survivors, and loved ones in search of connection and community.

The addition of Denver-based MyLifeLine adds to the global network of 190 service locations, including 47 CSC and Gilda's Club affiliates, partnerships with hospitals, and educational resources that touch one million people each year. CSC's role as the leading voice for patients also includes in-depth research and policy advocacy.

"Together, we will build on our shared mission to ensure that no one faces cancer alone, and we will do so in an innovative, groundbreaking way," said Kim Thiboldeaux, CEO of CSC. "We will transform the way individuals whose lives are disrupted by cancer get information and build a community of friends and family to help them through this experience. We will also increase the patient's voice in policy debates and form new partnerships with corporations, foundations, and other organizations."

Marcia Donziger, a cancer survivor whose personal experience and that of her friends inspired the creation of MyLifeLine 10 years ago, will join CSC as Vice President, Digital Strategy and Business Development.

"I believe this collaboration is a major victory for people impacted by cancer. As a cancer survivor, I know firsthand the stress, anxiety and isolation that cancer inflicts upon patients and their families," Donziger said. "MyLifeLine was created as a gift for all patients diagnosed after me. I wish I had a tool like MyLifeLine to help me coordinate the care and support I needed. The Cancer Support Community elevates the MyLifeLine community in a meaningful way by integrating their award-winning cancer education materials and personalizing the resources based on everyone's unique situation. This new endeavor is a dream come true for me as I have admired the work of Cancer Support Community for decades."

Thiboldeaux and Donziger said they are committed to a seamless transition that engages the individuals and groups that rely on both organizations' services. For more information.

WASHINGTON – (Jan 30, 2019) –The Cancer Support Community (CSC), a global nonprofit, is launching a unique research study focused on individuals diagnosed with Acute Myeloid Leukemia (AML), a cancer of the blood and bone marrow which accounts for approximately 19,520 new cases of cancer each year (American Cancer Society, 2018).

“AML is a serious diagnosis and patients require immediate and intensive treatment. Because of the acute nature of the disease, there is much to be learned about the patient and caregiver experience with AML,” said Linda House, president of the Cancer Support Community, whose Philadelphia-based Research and Training Institute will oversee the study. “This new study gives us the opportunity to learn more from patients about the full spectrum of their experience and allows us to address their concerns through our support services, educational materials, and by informing public policy.”

The Cancer Experience Registry: AML will explore the patient experience on several different topics, such as, their physical functioning, social life, work, stress, financial impact, treatment decision-making, and more. After completing the survey, participants will be connected to support and resources that meet their unique needs and have the option to receive additional information from CSC and its partners.

The Cancer Experience Registry: AML was created thanks to support from inaugural sponsors, Astellas Pharma Inc. and Jazz Pharmaceuticals. First launched in 2013, The Cancer Experience Registry has captured important information about the physical, social, and emotional health from more than 13,000 patients, survivors, and caregivers. The Cancer Experience Registry: AML is the 11th in a series of specialty registries hosted by CSC.

“We are proud to work with CSC to create an important resource to help AML patients and their loved ones navigate the physical and emotional challenges of this rapidly progressing and life-threatening blood cancer,” said Steven Benner, M.D., senior vice president and global therapeutic area head, Oncology Development, Astellas. “By generating actionable data to inform programming and scientific discourse, we believe this registry may help contribute to creating a brighter future for AML patients.”

“At Jazz, our passion for addressing patients’ unmet needs drives our day-to-day activities and fuels our commitment to raising awareness about conditions like AML,” said Allen Yang, M.D., Ph.D., vice president and acting chief medical officer of Jazz Pharmaceuticals. “We are pleased to support this ground-breaking hematology initiative and we thank the patients and caregivers for their willingness to share their experiences with AML.”

About Astellas

Astellas Pharma Inc., based in Tokyo, Japan, is a company dedicated to improving the health of people around the world through the provision of innovative and reliable pharmaceutical products. For more information, please visit our website at www.astellas.com.

About Jazz

Jazz Pharmaceuticals plc (Nasdaq: JAZZ), a global biopharmaceutical company, is dedicated to developing life-changing medicines for people with limited or no options, so they can live their lives more fully and redefine what is possible. As a leader in sleep medicine and with a growing hematology/oncology portfolio, Jazz has a diverse portfolio of products and product candidates in development, and is focused on transforming biopharmaceutical discoveries into novel medicines. Jazz Pharmaceuticals markets Xyrem® (sodium oxybate) oral solution, Erwinaze®(asparaginase Erwinia chrysanthemi), Defitelio® (defibrotide sodium) and Vyxeos® (daunorubicin and cytarabine) liposome for injection in the U.S. and markets Erwinase®, Defitelio® (defibrotide) and Vyxeos® 44 mg/100 mg powder for concentrate for solution for infusion in countries outside the U.S. For country-specific product information, please visit www.jazzpharmaceuticals.com/medicines. For more information, please visit www.jazzpharmaceuticals.com and follow us on Twitter at @JazzPharma.

NEW YORK– (June 26, 2017) – The Biden Cancer Initiative today announced Kim Thiboldeaux, CEO of the Cancer Support Community (CSC), along with other national leaders in the cancer field, has been selected to serve on the Initiative’s Board of Directors.

In his final State of the Union address in January 2016, President Barack Obama tasked Vice President Joe Biden with leading the Cancer Moonshot, a national effort to dramatically accelerate progress toward cures and achieve ten years of progress in five. Through the Biden Cancer Initiative, Vice President Biden will continue his work to reimagine how the government, academia, non-profits, and private sector can better organize their resources and systems to collaborate to take on cancer.

“The Biden Cancer Initiative is honored to have Kim join our board. As head of the largest professionally-led nonprofit network of cancer support organizations worldwide, Kim has a wealth of knowledge about the true experiences of cancer patients and their loved ones. Understanding the cancer experience from the patient’s perspective is essential to improving care—and caring—for cancer patients. Her personal experiences will help us achieve the Biden Cancer Initiative’s goals; they remind us to never lose sight that our work is in the service of all people who have been diagnosed with this life-threatening disease,” said Greg Simon, President of the Biden Cancer Initiative.

“It is an honor and a privilege to be asked to serve on the Board of the Biden Cancer Initiative,” commented Thiboldeaux. “No one knows better the importance of this work than Vice President Biden. His leadership and passion, combined with his personal experience as a caregiver and a father who lost his son to cancer, makes him the perfect person to continue this vital work to end cancer as we know it.”

Thiboldeaux joined The Wellness Community in 2000 as President and CEO. In 2009, The Wellness Community and Gilda’s Club joined forces to become the CSC, where Thiboldeaux has maintained her role as CEO. Thiboldeaux helped CSC become one of the largest providers of social and emotional support worldwide, advancing the idea that psychosocial care is as important as medical care in the face of a cancer diagnosis. CSC provides social and emotional support through a network of more than 50 local affiliates, more than 100 satellite locations and online. The organization also maintains a Research & Training Institute in Philadelphia and a Cancer Policy Institute in Washington, D.C.

The study will examine care options, quality of life and other issues impacting patients

PHILADELPHIA, PA– (Sept. 9, 2019) –The Cancer Support Community (CSC), a global nonprofit, is expanding its innovative patient experience work by launching a new research study to capture the patient experience of those diagnosed with liver cancer.

“Liver cancer is a critical illness that often has unique challenges,” said Linda House, president of the Cancer Support Community, whose Philadelphia-based Research and Training Institute will oversee the study. “Because there is so little research around liver cancer, this new initiative will help us better understand how health care providers can solve the unmet needs of people living with liver cancer around topics like broad cancer care, quality of life, and managing other chronic diseases in addition to their cancer.”

The Cancer Experience Registry: Liver Cancer will explore the patient experience on several different topics such as their physical functioning, social life, work, stress, financial impact, treatment decision-making, and more. After completing the survey, participants will be connected to support and resources that meet their unique needs and have the option to receive additional information from CSC and its health care partners.

First launched in 2013, The Cancer Experience Registry has captured important information about the physical, social, and emotional health from more than 14,000 patients, survivors, and caregivers. The Cancer Experience Registry: Liver Cancer is the 13th in a series of specialty cancer registries hosted by CSC. It was created thanks to support from Genentech, a member of the Roche Group.

CSC is grateful for the work of The Bili Project Foundation, Blue Faery: The Adrienne Wilson Liver Cancer Association, and the Global Liver Institute, who have partnered to help with this project.

Patients and caregivers can access the registry and share their story by creating an account at https://www.cancerexperienceregistry.org/.

San Francisco, California- [January 25, 2018] - The Cancer Support Community (CSC) announced today at the 2018 ASCO-SITC (American Society of Clinical Oncology-Society of Immunotherapy of Cancer) Clinical Immuno-Oncology Symposium the results of its survey analysis assessing the needs of immunotherapy patients, caregivers, and health care providers.

The survey’s release comes on the heels of a Washington Post story earlier this month examining patient reactions to immunotherapy treatments. The CSC survey, which was conducted in early 2017, sought to better understand and identify key areas of concern or gaps in knowledge and patient care related to immunotherapy as identified by patients, caregivers, and health care providers.

“The findings highlight the need for easily accessible and comprehensive information on immunotherapy,” said Linda House, CSC president. “The Cancer Support Community is committed to providing this solution through our innovative Immunotherapy & Me program that supports the unique needs of patients receiving immunotherapy treatment and the clinical staff who care for them.”

The CSC materials will be an important tool for the patients, caregivers, and providers who revealed the following experiences in the study:

• Most patients (52.4 percent), and nearly 40 percent (39.3 percent) of caregivers, reported that understanding how immunotherapy works and managing treatment-related side effects were ‘quite a bit’ or ‘very much’ of a problem during immunotherapy treatment.
• Among health care providers, about 40 percent indicated that understanding how immunotherapy works and managing treatment-related symptoms and side effects are ‘quite a bit’ challenging for their patients; nearly half (48.7 percent) also stated that finding support with issues related to cancer care was also ‘quite a bit’ challenging for their patients.
• 60 percent of caregivers and nearly 45 percent (44 percent) of patients stated that an online tool/website to manage their immunotherapy (IO) treatment would be ‘quite a bit’ or ‘very much’ helpful to them.
• Nearly 30 percent (29.8 percent) of patients and 50 percent (48.2 percent) of caregivers reported that they would be willing to use an online tool to help manage their, or their loved ones, immunotherapy treatment on a ‘weekly’ basis.
• Of note, almost 90 percent (86 percent) of health care providers reported that they were ‘quite a bit’ or ‘very much’ likely to refer patients to immunotherapy and cancer-related print materials. Well over half (59.3 percent) stated that they were ‘quite a bit’ or ‘very much’ likely to refer their patients to an online tool to help manage their immunotherapy treatment.

House shared the findings at 2018 ASCO-SITC Clinical Immuno-Oncology Symposium. The full poster as presented at the Symposium is available online. The CSC website includes additional information about the Immunotherapy & Me pilot program.

The Cancer Support Community Delivers Groundbreaking Immunotherapy Support and Education Program to Patients and Providers

Cancer Support Community launches first-of-its-kind immunotherapy pilot program in partnership with cancer centers in Colorado, Mississippi, New York, Ohio, Tennessee, and Washington

WASHINGTON, DC — The Cancer Support Community (CSC), an international nonprofit, today announced the launch of Immunotherapy & Me, an innovative program to support the unique needs of patients receiving immunotherapy treatment, and the clinical staff who care for them. The program aims to identify and implement patient-centered practice solutions across the continuum of immunotherapy care.

“The Cancer Support Community sees that immunotherapy is greatly impacting how we treat cancer, with marked advances in the treatment of lung, melanoma, genitourinary, hematologic, head and neck cancers, and more,” said Kim Thiboldeaux, CEO, Cancer Support Community. “This is why we are so excited to work with our pilot partners to improve the experience of patients receiving immunotherapy and to help establish clinical practice tools to advance quality care.”

Immunotherapy uses the body’s own immune system to fight cancer. Given the unique way immunotherapy engages the immune system, recognition and management of side effects can be challenging. Patients and health care teams share the responsibility of promptly reporting treatment-related symptoms, however, patients often require additional education, support, and resources to become active partners in their care.

Immunotherapy & Me addresses this by empowering patients to promptly report treatment-related side effects and by providing staff the resources to streamline patient education around symptom management. Immunotherapy & Me will be piloted at nine oncology practice sites for twelve months, including the collection and reporting of patient outcomes. A core component of this initiative will be assessing patient levels of distress using CSC’s CancerSupportSource® to document program impact on the overall patient experience. Immunotherapy & Me offers patients and staff three categories of activation tools: a web-based app to monitor treatment-related side effects; educational materials that are both immunotherapy-specific and general cancer information; and an expansion of CSC’s existing Cancer Support Helpline to include registered nurses to assist patients and families with concerns related to their clinical care.

“The tools and framework the Cancer Support Community provides through the Immunotherapy & Me pilot are invaluable to our team of physicians, nurses, social workers, navigators, and researchers,” said Dr. Lee Schwartzberg, MD, FACP, medical oncologist and Executive Director of the West Cancer Center based in Memphis, Tennessee. “By engaging a wide-variety of touchpoints—on-site, online, and, over the phone—we maximize patient engagement, can better monitor patient progress, and hope to improve patient outcomes.”

CSC is partnering with nine highly regarded oncology practices for this pilot. These practices allow CSC to bring interventions to immunotherapy patients at the point-of-care while reaching geographically and demographically diverse patient populations. These pilot sites are:

Catholic Health Initiatives

• Harrison Medical Center – Bremerton, Washington
• Harrison Medical Center – Poulsbo, Washington

Centura Health

• Littleton Adventist Hospital – Littleton, Colorado
• Parker Adventist Hospital – Parker, Colorado
• Porter Adventist Hospital – Denver, Colorado

OHC (Formerly Oncology Hematology Care, Inc.)

• OHC West Office – Cincinnati, Ohio

Roswell Park Cancer Institute – Buffalo, New York

West Cancer Center

• West Cancer Center: Corinth – Corinth, Mississippi
• West Cancer Center: Wolf River – Memphis, Tennessee

The Immunotherapy & Me program is made possible through the generous financial support of Bristol-Myers Squibb.

ORLANDO, Fla. – (Mar. 23, 2017) – Women and young adults with lung cancer worry more about people discriminating against them and more strongly agree that lung cancer is viewed as a self-inflicted disease, according to a study presented today by the Cancer Support Community at the National Comprehensive Cancer Network (NCCN) Annual Meeting.

Patients in the online Cancer Experience Registry: Lung Cancer were asked a series of questions around stigma and how they felt others perceived their cancer. Of the 47 people included in the survey, 91 percent agreed that people assume lung cancer is caused by smoking, and 74 percent agreed that lung cancer is generally viewed as a self-inflicted disease. Women and younger patients were both significantly more likely to agree that lung cancer is viewed as self-inflicted, and they also worried more about people discriminating against them due to their cancer.

Additionally, patients with small-cell lung cancer, a cancer type almost exclusively linked to smoking, felt more guilt and tried harder to keep their diagnosis a secret than patients with other types of lung cancer. The study also showed that people who reported more guilt about having lung cancer were at greater risk for clinical levels of depression and reported more distress about their cancer.

“Despite patient education and public awareness attempts to de-stigmatize lung cancer, our research shows that stigma, guilt, and worry of discrimination persist among these patients. Further, we are learning that people have different experiences with stigma, based on their gender, age, and even the type of lung cancer they have,” said Alexandra Zaleta, Ph.D., director of research at the Cancer Support Community.

The Cancer Experience Registry: Lung Cancer is one of 10 specialty registries created by the Cancer Support Community to help researchers better understand the full social and emotional needs of people living with cancer, as well as their caregivers. For more information on the Cancer Experience Registry, visit www.cancerexperienceregistry.org.

TUBA CITY, AZ - (May 23, 2019) - Leaders of the Navajo Nation, the Tuba City Regional Health Care Corporation (TCRHCC), and the Cancer Support Community (CSC) joined Dr. Jill Biden on the Navajo Nation in marking a milestone moment: the opening of the first full-time cancer care center on an American Indian Reservation.

The culturally-adapted cancer care center at TCRHCC will provide oncology services to the Navajo and Hopi people. In addition, the programming will include patient- and caregiver-support and navigation TCRHCC developed in partnership with CSC, a global nonprofit that operates at 196 locations worldwide. CSC also secured funding from the Barbara Bradley Baekgaard Family Foundation to help launch this initiative.

The new center will fill a gap in cancer treatment that affects many American Indians, as the Indian Health Service provides primary medical care, but specialty care – including oncology – is beyond its mission. Consequently, patients on the Navajo Nation—which is the size of West Virginia—must travel hundreds of miles from home to access cancer treatment and support services. Accessibility is an issue, as transportation costs of seeking off-reservation cancer care can be insurmountable barriers to treatment for American Indian patients who live in communities where unemployment rates are above 50 percent and household incomes are below the national poverty level.

The two-day commemoration included remarks from Navajo Nation President Jonathan Nez and Dr. Jill Biden. Dr. Biden’s advocacy for cancer patients has included support for this effort during the Obama administration and as part of the Biden Cancer Initiative. President Nez and Dr. Biden joined Lynette Bonar, CEO of TCHRCC, and Kim Thiboldeaux, CEO of CSC, and other leaders, including officials from Penn Medicine, for a tour of the new treatment center where they met with the oncologists providing care and heard from patients and caregivers. In addition, they visited the House of Hope, a location near TCRHCC where patients and caregivers will access support and navigation services.

The delegation of leaders from organizations and companies that provided funding for this initiative included the Barbara Bradley Baekgaard Family Foundation, Eisai, Merck, and Pfizer.

“The Navajo Nation was honored to welcome former Second Lady Dr. Jill Biden, the Cancer Support Community, and many health industry leaders and professionals to the Tuba City Regional Health Care Corporation in support of the very first cancer treatment center in Indian Country,” President Nez said. “Working together through strong partnerships is key to providing these much needed services for our Diné people who require cancer treatment. On behalf of the Nez-Lizer Administration, we thank everyone for supporting this initiative.”

“Thank you, President Nez and the Navajo Nation, for such a warm welcome,” Dr. Jill Biden said. “Today’s landmark moment is a testament to the power of sharing what we know, listening to different perspectives and experiences, and working together to make tangible differences in people’s lives. In short, collaboration gets results.”

“It is wonderful to have a partnership with the Cancer Support Community and hear such encouraging words from Dr. Biden and President Nez. The specialty care center and the House of Hope will have such a positive impact on our patients and their loved ones,” said Lynette Bonar, CEO of TCRHCC, whose staff led the delegation’s tour of the new specialty care center and the House of Hope.

“It is unacceptable that people affected by cancer on the Navajo Nation must travel hundreds of miles to get cancer care,” said Kim Thiboldeaux, CEO of the Cancer Support Community and a member of the Biden Cancer Initiative’s Board of Directors. “The Cancer Support Community is honored to be working with the Tuba City Regional Health Care Corporation to right this wrong and make ground-breaking, culturally-adapted patient and caregiver resources a reality for the Navajo people. Today’s announcement means better access to screenings, treatment, navigation, counseling, and other patient-focused services.”

It is with great sadness that we learned today of the passing of Gene Wilder, the iconic actor, screenwriter, author and advocate.

An honorary board member of the Cancer Support Community, Gene was instrumental in the 1991 founding of Gilda’s Club, named in honor of his late wife, comedienne Gilda Radner. During her battle with ovarian cancer, Gilda was a member of The Wellness Community in Santa Monica, California and wrote about her experience in her book, It’s Always Something.

In 2009, The Wellness Community and Gilda’s Club Worldwide joined forces to become the Cancer Support Community, with more than 46 affiliates around the world. Both Gilda’s Club and the Cancer Support Community locations offer an array of professionally led social and emotional support programs for people with cancer and their families.

“Gene was a great friend and supporter to Gilda’s Club. His support was monumental during the founding of Gilda’s Club, and he remained a strong advocate for the vital programs and shared mission of our two legacy organizations,” said Joanna Bull, Founder of Gilda’s Club Worldwide. “Gene had promised Gilda that no one should face cancer alone, a vow that moved Gilda’s Club forward as he served as its celebrity spokesperson. That promise was held over many years and supported in every way by his widow, Karen. The Cancer Support Community and Gilda’s Club are grateful, and we are diminished by the ending of Gene’s wonderful life.”

Our thoughts are with the family and friends of Gene Wilder during this difficult time.