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.

WASHINGTON – New findings presented by the Cancer Support Community suggest that a significant proportion of patients have difficulty conceptualizing value in terms of current cost-benefit models used by policymakers.

Out of the 31 percent of patients who defined value as specifically relating to their health care experience, only 10 percent related cost to value as part of their definition.

The 1,415 patients in the study, recruited from the Cancer Experience Registry, were asked to answer the open-ended question: When considering your cancer experience, how do you define value?

Typical health-specific responses were: “Value is quality of life…” or, “[Value is] the best possible cancer treatment center available that has the best…team of oncologists.”

Furthermore, 40 percent of those surveyed defined value in the context of personal beliefs. For example, one respondent answered, “Value is making the most of each day to serve others.”

Another 29 percent of respondents had difficulty conceptualizing value as a notion related to their health care. For example, they responded that they did not understand or that there was “no value.”

The data was presented today at the Annual Conference of the Association for Value-Based Cancer Care in Washington, D.C.

“Of all the proposed formulas for measuring value in health care, there is not yet one that accurately takes into account the personal preferences and values of the people intended to receive this care. We continue to find in our research that the patient voice is not fully represented in value framework discussions,” said Kim Thiboldeaux, CEO of the Cancer Support Community.

In current discussions on value, organizations such as the National Comprehensive Cancer Network, the American Society of Clinical Oncology, the Institute for Clinical and Economic Review, and others are developing frameworks to measure value using various algorithms of clinical benefit, toxicity and cost. These frameworks do not necessarily reflect individual patient perspectives on value. Researchers from this study recommend incorporating the comprehensive needs of the end-user, the patient, into all framework solutions.

The full poster is available online here.

For more information on the Cancer Experience Registry, please visit www.cancerexperienceregistry.org.

WASHINGTON – The Cancer Support Community (CSC) and Debbie’s Dream Foundation: Curing Stomach Cancer (DDF) launched today the Cancer Experience Registry: Stomach Cancer, an addition to the Cancer Experience Registry that will focus on people living with stomach cancer, including gastroesophageal junction (GEJ) adenocarcinoma and other cancers of the gastric tract.

The Cancer Support Community, an international nonprofit, introduced the Cancer Experience Registry as a way to connect people with cancer to each other and to convey the specific emotional, financial and social realities of living with cancer to the community at large. With more than 8,700 members, the Registry has grown to include specialty registries on individual types of cancer and the unique experiences that accompany them.

“CSC is proud to launch this new addition to the Cancer Experience Registry to better understand the unique needs of people living with stomach cancer. We hope that our findings will shape the development of future programs and resources for people living with this disease,” said Joanne Buzaglo, Ph.D., senior vice president of research and training at the Cancer Support Community.

Stomach cancer, including gastroesophageal junction (GEJ) adenocarcinoma, accounts for 37,600 new cancer cases in the United States each year.

Participants in the new registry will be asked a set of questions concerning their experience with stomach cancer, including items on patient-physician communication, care coordination, and financial impacts. Participants will also be given the opportunity to share their own thoughts about their experience and pass on advice to others who are living with cancer. Throughout the process, participants will have access to the multitude of resources provided by the Cancer Support Community, Debbie’s Dream Foundation and additional organizations.

"As the leading stomach cancer organization, Debbie's Dream Foundation is excited to partner with the Cancer Support Community on the Stomach Cancer Experience Registry. Our hope is that the Registry will identify additional issues faced by stomach cancer patients, family members, caregivers and friends. The information collected will give us a more complete picture of the struggles and gaps that exist, which will lead to further information sharing,better support, and new education offered," said Debbie Zelman, president and founder of Debbie's Dream Foundation: Curing Stomach Cancer.

Lilly Oncology is the inaugural sponsor of the Cancer Experience Registry: Stomach Cancer. “People with gastric cancer experience distinct challenges, and we know that cancer care goes well beyond medicines,” said Richard Gaynor, M.D., senior vice president of product development and medical affairs for Lilly Oncology. “We are honored to help understand and support the evolving social and emotional journeys for these individuals as they navigate their care.”

Caregivers of people with stomach cancer also have the opportunity to share their experiences through the Cancer Experience Registry: Caregivers.

For more information on the Cancer Experience Registry: Stomach Cancer, or the Cancer Experience Registry: Caregivers, please visit www.cancerexperienceregistry.org.

HOLLYWOOD, Fla. – Among patients who are at risk for depression, those who indicated high concerns around pain, making a treatment decision, and ‘finding meaning’ were significantly more likely to be experiencing higher levels of distress than those who were still at risk for depression but were experiencing lower levels of distress, according to research presented today by the Cancer Support Community, an international nonprofit, at the annual meeting of the National Comprehensive Cancer Network.

For example, among patients who were at risk for depression, 96 percent of those who had the highest distress levels said they were moderately to very seriously concerned about pain, compared to only 24 percent of people who were at risk for depression but had lower distress levels. This data suggests that pain may be a factor to determine urgency in referral to appropriate care post distress screening.

By contrast, in other items, such as “worrying about the future,” patients who had overall high and low distress had similar levels of concern, indicating that this item is less likely to distinguish patients with high distress from those with lower distress.

“Stressors can exacerbate depression and leave patients vulnerable for poorer health outcomes and quality of life. Resources should be in place to support patients through pain management, treatment decision-making, and spirituality,” said Joanne Buzaglo, Ph.D., senior vice president of research and training at the Cancer Support Community. “For practices that are working hard to meet the psychosocial needs of cancer patients, these findings suggest that innovative approaches designed to streamline identification of those at greatest risk of depression and overall distress and poorer outcomes need to be developed, implemented and tested, and that these approaches could potentially be effective in managing workflow while increasing quality of care.”

Researchers also found that patients from households earning less than $40,000 a year were twice as likely to be depressed than those from households earning more than $100,000, and that Latinos were almost twice as likely than Caucasians to be at risk for depression.

The study was conducted among 842 patients of Cancer Support Community affiliates across the U.S. who participated in a web-based distress screening tool, CancerSupportSource®.

The American College of Surgeons Commission on Cancer and the National Comprehensive Cancer Network recommend distress screening for all cancer patients.

WASHINGTON – (Feb. 14, 2017) – The Barbara Bradley Baekgaard Family Foundation announced today its pledge of more than $500,000 to the Cancer Support Community, a nonprofit focused on the social and emotional impact of cancer, to create welcoming spaces in hospitals where cancer support groups and programs will be put in place.

The partnership will take place in six new hospital settings where the Cancer Support Community’s vital programs for cancer patients and caregivers will be implemented. The Cancer Support Community began expansions into hospitals in 2013. This partnership will allow the organization to accelerate the expansion into additional hospitals across the nation.

“Every Cancer Support Community and Gilda’s Club location is designed to be a homelike space for people touched by cancer. Through this partnership, we are looking forward to creating warm and friendly spaces inside of hospitals where people facing cancer can receive professional, high quality services to help them during their cancer experience,” said Kim Thiboldeaux, CEO of the Cancer Support Community.

Hospital sites selected for the partnership will allocate space for Cancer Support Community programs and will receive design consultation from the Barbara Bradley Baekgaard Family Foundation. CSC facilities typically include a meeting room for group therapy, a reception area, office space, a library or other quiet space, and a kitchen area. While hospital and foundation staff work together to design the physical space, Cancer Support Community Headquarters will train staff in the organization’s comprehensive program model to ensure the hospital meets all standards for service delivery.

Barbara Bradley Baekgaard is a cofounder of Vera Bradley, Inc., a leading designer of women’s handbags and accessories.

“We are pleased to partner with the Cancer Support Community to bring their high quality, evidence-based program model to new hospital sites and help patients and their loved ones heal in a warm, inviting space,” said Joanie Hall, a founder of the Barbara Bradley Baekgaard Family Foundation and member of the Bradley family.

Recent studies have shown that not only do well-designed spaces increase patient satisfaction, but they also may have a therapeutic impact on patients, loved ones, and hospital staff, and may even reduce health care costs and improve patient outcomes.

Hospital sites for the partnership will be announced in 2017, and Cancer Support Community programs will be implemented within 24 months.