On December 14, U.S. Representative Mark DeSaulnier (D-CA), Representative Debbie Wasserman Schultz (D-FL), Senator Amy Klobuchar (D-MN), Senator Ben Cardin (D-MD), and Representative Brian Fitzpatrick (R-PA) introduced the Comprehensive Cancer Survivorship Act (CCSA)—legislation that will address gaps in survivorship care and develop standards to improve the overall patient-centered quality of care and navigation needs of cancer survivors and their families.
For every cancer survivor, the disease imposes vastly different and highly personal experiences. With more than 18 million cancer survivors in the United States—and 26 million expected by 2040—there is an urgent need to empower them with the best possible resources and care. The CCSA will set new standards of care to ensure the best and most seamless experience for survivors, their families, and caregivers, throughout their survivorship journey, from diagnosis to end of life.
CCSA Key Pillars
- Care planning and transition: Provide coverage to address the transition to primary care to help survivors develop personalized treatment care plans, standardize processes, and consolidate treatments to guide survivorship monitoring and follow-up care.
- Alternative payment model: Study the existing reimbursement landscape to develop an alternative payment model to ensure a coordinated approach to survivorship care across an episode of care.
- Navigation: Develop effective and comprehensive navigation services that emphasize the continuum of care, such as follow-up and health disparities and determinants, like food insecurity, housing, transportation, labor, broadband, telehealth access, and childcare
- Quality of care: Establish grants to promote utilization of navigation, employment of risk stratification, transition to primary care, utilization of care plans, potential use of at-home care, and better use of information technology for patient experience data
- Workforce: Establish workforce assistance grants to help survivors, their families, and caregivers when faced with a range of workforce challenges
- Education and awareness: Create resources for survivors and health professionals to promote early detection, preventive care, and help providers provide high-quality services.
The CCSA also addresses innovation and technology use, fertility preservation, long-term studies, survivorship resources, and provisions concerning childhood and adolescent cancer.
To read more about the CCSA, read the one-pager developed for the legislation.
Commentary
“As an 8-year survivor of a noncurable treatable blood cancer, I know firsthand how important a seamless continuum of care is,” said Mr. DeSaulnier. “I am proud to join Congresswoman Wasserman Schultz and my colleagues in leading this effort to ensure every cancer survivor in America has access to the support and resources they need to be healthy and happy in all facets of life. I am also pleased that this legislation includes my Cancer Care Planning and Communications Act to help Medicare patients be better informed about their cancer diagnoses.”
“As a 15-year cancer survivor, confronting it head-on, with an all-hands-on-deck approach, is my personal and professional mission. With the CCSA, I am proud to introduce far-reaching legislation that better enables cancer survivors to choose their own path, provides them agency and autonomy over their personal health experiences and decisions, and addresses the entire survivorship continuum of care,” said Ms. Wasserman Schultz. “From the point of diagnosis, through active treatment and transitions to primary care, until the end of life, this legislation sets the standards of care that all survivors need and deserve. The CCSA confronts care planning, transition, navigation, workforce, education, and awareness, and empowers survivors with the best possible resources and care to overcome this terrible disease.”
“As a result of advances in early detection and access to effective treatments, more people are recovering after their cancer diagnoses. That’s why we must do everything we can to improve care services and quality of life for cancer survivors,” added Ms. Klobuchar. “This bipartisan legislation will do just that, ensuring that more survivors receive comprehensive, coordinated postdiagnosis and postrecovery care that addresses their unique treatment needs throughout the course of their life.”
“Living with or surviving cancer is personal for so many families across our nation, and, thanks to increased access to preventive care, which leads to early detection, the rate of cancer survivorship continues to grow,” said Mr. Cardin. “Our legislation recognizes the importance of investing in improving quality of life and long-term care of cancer survivors who have bravely fought and won their battles against cancer.”
“Each year, our nation makes new advancements in cancer treatment, increasing the number of cancer survivors across the country,” said Mr. Fitzpatrick, Co-Chair of the Congressional Cancer Caucus. “It is time that we set standards of care for those who are cancer survivors, and we address the emotional, financial, and physical challenges that these millions of Americans are faced with. Like so many in America, the fight against cancer is personal to me, and I am proud to join my colleagues in both chambers on both sides of the aisle in introducing the CCSA.”
The following organizations support the CCSA: Alliance for Fertility Preservation, American Association for Cancer Research, American Cancer Society Cancer Action Network, American Lung Association, American Society for Reproductive Medicine, Asian American Pacific Islander Nurses Association, Association for Clinical Oncology, Breast Care for Washington, Brem Foundation, Cancer Support Community, CancerCare, Child Cancer Cause, FORCE: Facing Our Risk of Cancer Empowered, LUNGevity Foundation, Lymphoma Research Foundation, Malecare and the National LGBT Cancer Project, Moffitt Cancer Center, National Coalition for Cancer Survivorship, National Comprehensive Cancer Network, Nueva Vida, Oncology Nursing Society, Prevent Cancer Foundation, Sisters Network Inc., Susan G. Komen, Tigerlily Foundation, Sylvester Comprehensive Cancer Center at the University of Miami, YMCA of the USA, and the Young Survival Coalition.
