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.

WASHINGTON, D.C. – The Cancer Support Community (CSC), an international nonprofit, today announced the launch of the Frankly Speaking About Cancer Clinical Trials program, a landmark cancer education series devoted to building awareness among patients and caregivers about the importance of clinical trials as a viable treatment option.

Less than five percent of patients with cancer enroll in clinical trials, a number that has held steady for the past 30 years despite the fact that more than 20 percent of patients are eligible to participate in a clinical trial. Though they are at the heart of today’s successful cancer treatments, clinical trials are poorly understood by the public, and often viewed as an opportunity for researchers to treat people like test subjects or only as a “last ditch” option.

“When we ask individuals facing a cancer diagnosis about clinical trials, more often than not, we hear myriad reasons why they are not considered or why they were not presented as a possible treatment option. CSC’s Frankly Speaking About Cancer Clinical Trials program aims to proactively change this dialogue so that every patient feels empowered to ask the question: ‘Is a clinical trial right for me?’” said Kim Thiboldeaux, CEO, Cancer Support Community. “This new program is just the first step in our commitment to helping bring together and educate those affected by cancer, as well as the general public, on the issue of clinical trials so that together we can increase and accelerate patient enrollment and ensure that everyone knows their options.”

Beginning in June 2015, CSC formed a national advisory board, conducted nearly 30 interviews with key leaders, a national survey of patients and caregivers with more than 580 respondents, and summarized the findings in a white paper report that informed the development of the program's patient education resources. The Frankly Speaking About Cancer Clinical Trials program now offers a full suite of patient- centric materials and is being rolled out with an initial series of 15 workshops across the country, including today’s workshop held at CSC’s Greater Philadelphia Campus.

“I have spent the last 37 years doing cancer clinical trials and am honored to be a part of the Cancer Support Community’s Frankly Speaking About Cancer Clinical Trials program,” said Gerald L. Messerschmidt, MD, Director, Clinical Research Center, Lankenau Institute for Medical Research. “This program will be a crucial instrument in our work to change patient and caregiver’s perceptions of the value of clinical trials. Cancer treatment innovation will advance more rapidly if we educate patients about clinical trials and improve rates of enrollment.”

In addition to the launch of the Frankly Speaking About Cancer Clinical Trials program, CSC will also host several dozen of the hundreds of summits held around the country on June 29 at 28 of CSC’s affiliates, in conjunction with the Cancer Moonshot Summit held in Washington, DC. The Cancer Moonshot Summit will be the very first time that stakeholders representing all types of cancers will convene under one national charge. Attendees at summits across the nation include leaders representing the entire cancer community – including researchers, doctors, scientists, philanthropists, community oncologists, advocates, patients, and survivors. The goal of the Cancer Moonshot is to double the rate of progress in cancer prevention, diagnosis, treatment and care over the next five years and to ultimately end cancer as we know it.

“Nearly 1.7 million people are expected to be diagnosed with cancer in 2016, a staggering number given the advancements that have been made in preventing and treating cancer over the past several years,” Thiboldeaux said. “We all know someone who has been touched by cancer and we cannot wait another 30 years to move the needle — now is the time for progress through education.”

The Frankly Speaking About Cancer Clinical Trials program was developed through the eyes of the patient and offers interactive videos, webinars, an innovative 8-chapter photo narrative, and other materials and resources that can be accessed and found here.

CSC’s work will continue with additional programming coming this summer and fall, in coordination with a diverse group of partnerships with 20 organizations, to continue to better understand the gaps in patient understanding and participation of clinical trials.

Contact:
Aimee Tysarczyk atysarczyk@briancom.com
(484) 385-2909

Megan McMonagle mmcmonagle@briancom.com
(484) 385-2983

WASHINGTON – The Cancer Support Community, an international cancer nonprofit, has endorsed the Psychosocial Standards of Care for Children with Cancer and their families that were published in a 2015 special issue of Pediatric Blood and Cancer. The scientific, evidence-based psychosocial standards define a minimum level of care that all children with cancer and their families should receive. The Standards were developed following rigorous research and academic requirements and processes, and involved over 80 clinicians and researchers from the US, Canada and the Netherlands.

The Mattie Miracle Cancer Foundation spearheaded the effort to create and implement Standards of Care to ensure patients and families have access to a minimum level of psychosocial care from the time of diagnosis, through survivorship, or end of life and bereavement care. “Having our child diagnosed with cancer, undergo treatment, and die from this disease, we learned that childhood cancer is not just about the medicine! The psychological impact of childhood cancer is just as real as the physical consequences for patients and their families," said Vicki and Peter Brown, Co-Founders of the Mattie Miracle Cancer Foundation and parents of Mattie Brown.

“Social and emotional support are just as important as medical care in the face of a cancer diagnosis. We support these new Psychosocial Standards of Care and share with The Mattie Miracle Cancer Foundation the goal of ensuring that children with cancer and their families have access to comprehensive cancer care that includes quality psychosocial support,” said Vicki Kennedy, LCSW, Vice President of Program Development and Delivery at the Cancer Support Community.

The development of the Psychosocial Standards of Care is a major step forward in addressing the needs of children with cancer and their families. The integration of psychosocial care along with disease-directed treatment improves the quality of life across the cancer trajectory. Depression and other psychosocial concerns can affect adherence to treatment regimens and decrease coping abilities. Therefore, making psychosocial care as essential component of standard treatment maximizes positive treatment outcomes.

Now that the Psychosocial Standards of Care for Children with Cancer and Their Families have been published, The Mattie Miracle Cancer Foundation and the team of pediatric oncology experts will work to encourage the rapid adoption of the Standards in clinical sites throughout the country. Learn more at www.mattiemiracle.com.

About The Mattie Miracle Cancer Foundation

Mattie Miracle Cancer Foundation, a 501(c)3 public charity, is dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families, and health care personnel. Children with cancer and their families must be supported throughout the cancer treatment journey, from date of diagnosis through treatment, survivorship, end of life and bereavement, and we must ensure access to quality psychosocial and mental health care are always provided, so that children and their families can cope with cancer and lead as happy and as productive lives as possible.

WASHINGTON – (Oct. 24, 2016) – The Cancer Support Community, an international nonprofit, was awarded last week the Annual Achievement Award of the Association of Community Cancer Centers (ACCC) for outstanding contributions nationally to cancer care and to patients with cancer. The award was presented before an audience of approximately 600 attendees at the National Oncology Conference, held October 19-21 in St. Louis, Missouri.

The ACCC’s Annual Achievement Award is presented to individuals or groups whose work in cancer care has significantly contributed to the oncology patient. Past honorees include esteemed cancer advocates and foundation leaders, as well as U.S. presidents and senators, such as President George H.W. Bush and Barbara Bush, and Sen. Ted Kennedy.

“We are honored to accept the Annual Achievement Award and are grateful for ACCC’s recognition of our important work. We share in ACCC’s vision to achieve quality, comprehensive cancer care for all,” said Kim Thiboldeaux, CEO of the Cancer Support Community.

The Cancer Support Community was awarded for its commitment to cancer patients and their caregivers through a multitude of services, including its in-person support programs, telephone helpline and educational resources, all provided free of charge to patients. ACCC also recognized the Cancer Support Community’s work in psychosocial, caregiver and survivorship research through the organization’s Research and Training Institute, as well as its efforts in public policy and advocacy through its Cancer Policy Institute.

The Association of Community Cancer Centers is an advocacy and education organization with more than 23,000 affiliated cancer care professionals from over 2,500 hospitals and practices nationwide. ACCC provides a national forum for addressing issues that affect community cancer programs, as well as resources for the entire oncology care team.