Source: United States House of Representatives – Representative Debbie Wasserman Schultz (FL-23)
“As a cancer survivor, confronting it head-on, with an all-hands-on-deck approach, is my personal and professional mission. With the Lainie Jones Comprehensive Cancer Survivorship Act, 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 Wasserman Schultz, Co-Chair of the House Cancer Caucus. “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. This bill confronts care planning, transition, navigation, workforce, education, and awareness, and empowers survivors with the best possible resources and care to overcome this terrible disease. No survivor or family should be left in the wilderness to navigate this disease or its aftermath.”
Washington, D.C. – Today, U.S. Rep. Debbie Wasserman Schultz (FL-25), Rep. Brian Fitzpatrick(PA-1), Rep. Mark DeSaulnier (CA-10), and Rep. Joe Wilson (SC-2) re-introduced the Lainie Jones Comprehensive Cancer Survivorship Act (CCSA), a critical piece of legislation which will address gaps in survivorship care and develop desperately needed standards to improve the overall patient-centered quality of care and navigation needs of cancer survivors and their families.
This legislation is named for Lainie Jones, who faced adrenal carcinoma, sarcoma, breast cancer, thyroid cancer, melanoma, lung cancer, and recently passed away due to glioblastoma, an aggressive form of brain cancer. Diagnosed with cancer for the first time at 18 months old, after her third diagnosis in her twenties, Jones found out she had Li-Fraumeni syndrome—a rare genetic condition that predisposes her to multiple cancers. She spent 13 years as an online advocate, encouraging followers to do self-checks and stay up to date with doctor visits.
“As a cancer survivor, confronting it head-on, with an all-hands-on-deck approach, is my personal and professional mission. With the Lainie Jones Comprehensive Cancer Survivorship Act, 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 Wasserman Schultz, Co-Chair of the House Cancer Caucus. “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. This bill confronts care planning, transition, navigation, workforce, education, and awareness, and empowers survivors with the best possible resources and care to overcome this terrible disease. No survivor or family should be left in the wilderness to navigate this disease or its aftermath.”
“Cancer survivorship is not an afterthought—it is part of the fight. A diagnosis changes a life in an instant, but for survivors and their families, the challenges often continue long after treatment ends. Our health care system must meet that reality with the same seriousness, coordination, and compassion we bring to fighting the disease itself. The Lainie Jones Comprehensive Cancer Survivorship Act strengthens the continuum of care—from survivorship planning and care navigation to workforce support, education, and long-term follow-up—so survivors are not left to navigate life after cancer alone,” said Fitzpatrick, Co-Chair of the House Cancer Caucus.
“I know from firsthand experience as a cancer survivor the importance of quality care not just to beat cancer, but also to thrive in the years following a diagnosis. I am proud to join Congresswoman Wasserman Schultz and my colleagues in leading this effort to set new standards of care that address the unique needs of cancer patients from diagnosis to treatment to aftercare to ultimately improve their quality of life,” said DeSaulnier
“I am grateful to support all those recovering from breast cancer by joining my colleagues in leading the Lainie Jones Comprehensive Cancer Survivorship Act. Comprehensive postoperative care is critical to supporting patients. I am particularly appreciative of the medical professionals in South Carolina who worked with my daughter-in-law Jennifer Wilson to persevere against aggressive breast cancer. Jennifer’s example to the women of South Carolina and elsewhere remains an inspiration,” said Wilson.
“The data is unambiguous: only one in three survivors receive a survivorship care plan, and that number is falling. At the same time, half of all survivors are experiencing financial hardship tied to their diagnosis,” said Shelley Fuld Nasso, Chief Executive Officer of Cancer Nation. “These are not statistics — they are the daily reality of 18 million Americans living with, through, and beyond cancer. The Lainie Jones Comprehensive Cancer Survivorship Act answers that reality with real solutions, from coverage of care planning and coordination to employment assistance to a payment model that rewards quality survivorship care. Cancer Nation has spent 40 years fighting for survivors’ right to not just survive but thrive. This bill makes that possible, and we are proud to stand with Representatives Wasserman Schultz, Fitzpatrick, Wilson, and DeSaulnier in demanding it.”
“Following active treatment, cancer patients are faced with a transition to survivorship care that can be disjointed and difficult to navigate. There are nearly 19 million cancer survivors across the US. These individuals often face higher healthcare costs for the rest of their lives,” said Lisa Lacasse, President of the American Cancer Society Cancer Action Network (ACS CAN). “The Lainie Jones Comprehensive Cancer Survivor Act creates pathways to address the financial challenges of cancer survivorship and maintain patients’ access to the health services needed to address the long-term effects of cancer, giving them the best chance of remaining cancer-free. We offer our enthusiastic support for this bill and urge Congress to pass it.”
“More than 521,000 childhood cancer survivors face a lifetime of health challenges due to their treatment. Many transition into primary care without a survivorship care plan and are unprepared for the significant health issues they may face, including hearing loss, infertility, and cardiac late effects,” said Steve Woshala, Chief Executive Officer of Children’s Cancer Cause. The Lainie Jones Comprehensive Cancer Survivorship Act helps address the specialized needs of this population through provisions such as Medicaid coverage to ease transitions of care.”
“Over the last 20 years, we have made tremendous strides in the treatment of lymphoma and many other blood cancers, as well as understanding the unique needs of cancer survivors,” said Meghan Gutierrez, Chief Executive Officer of the Lymphoma Research Foundation. “The Lymphoma Research Foundation commends Representatives Wasserman Schultz, Fitzpatrick, DeSaulnier, and Wilson for reintroducing the Lainie Jones Comprehensive Cancer Survivorship Act and recognizing that surviving cancer brings with it a set of physical, psychological, and financial needs that require ongoing attention and support. The Foundation is committed to the continued support of people with lymphoma and their care partners, to ensure that they not only survive but thrive in the face of a diagnosis.”
This legislation addresses:
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Care Planning and Transition: Provides coverage to address the transition to primary care to help survivors develop personalized treatment care plans, standardizes processes, and consolidates treatments to guide survivorship monitoring and follow-up care;
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Alternative Payment Model: Studies existing reimbursement landscape to develop an alternative payment model to ensure a coordinated approach to survivorship care across an episode of care, including the creation of comprehensive navigation services;
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Quality of Care: Establishes 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;
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Employment: Establishes employment assistance grants to help survivors, their families, and caregivers when faced with a range of workforce challenges; and
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Education, Awareness: Creates resources for survivors and health professionals to promote early detection, preventive care and help providers provide high-quality services.
It also addresses innovation and technology use, long-term studies on cancer survivorship progress in the U.S., access to fertility and preservation services, and provisions concerning childhood and adolescent cancer.
Over 50 organizations have endorsed the Lainie Jones Comprehensive Cancer Survivorship Act:
Academy of Oncology Nurse & Patient Navigators (AONN+), Adolescent and Young Adult Cancer Coalition, Alliance for Fertility Preservation, American Association for Cancer Research, American Cancer Society Cancer Action Network, American Society for Radiation Oncology, Association for Clinical Oncology, Association of American Cancer Institutes, Blood Cancer United, The Brem Foundation to Defeat Breast Cancer, Cactus Cancer Society, Cancer Awareness Network for Children, Inc., CancerCare, Cancer Nation, Cancer Support Community, Cancer Survivorship and Supportive Care Professionals Network (CSPN), Cervivor, Chemo Divas Foundation, Children’s Cancer Cause, Cholangiocarcinoma Foundation, Circle of Care for Families of Children with Cancer, Inc., Digestive Disease National Coalition, Emily Whitehead Foundation, Fight Colorectal Cancer, FORCE: Facing Our Risk of Cancer Empowered, Hadassah, The Women’s Zionist Organization of America, Head for the Cure, Hodgkin’s International, I’m Not Done Yet Foundation, International Myeloma Foundation, Living Beyond Breast Cancer, LUNGevity Foundation, Lymphoma Research Foundation, Male Breast Cancer Global Alliance, Man Up to Cancer, National Comprehensive Cancer Network, The National Pancreas Foundation, National Patient Advocate Foundation, Nicole Cares Foundation, Nueva Vida, Ovarian Cancer Research Alliance, Patient Empowerment Network, Prevent Cancer Foundation, Project Life, RESOLVE: The National Infertility and Family Building Association, Sharsheret, Sisters Network Inc., Stupid Cancer, Inc., Susan G. Komen, Teen Cancer America, Tigerlily Foundation, Triage Cancer, Unite for HER, Worth the Wait, Young Survival Coalition, and ZERO Prostate Cancer.
The full bill text can be found
here.
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