In recognition of the needs of the nation's 18 million cancer survivors-which are projected to grow to 26 million by 2040-legislators, health professionals, and patient advocates are focusing on substantive ways of improving their care, including new legislation.
The bipartisan Comprehensive Cancer Survivorship Act (CCSA) recently introduced by cancer survivor Rep. Debbie Wasserman Schultz (D-FL) has been hailed as a landmark piece of legislation that will provide a lifeline for cancer survivors and their families. In related action, a new report from the National Academies of Sciences, Engineering, and Medicine (NASEM) recommends strategies to help improve family caregiving for people with cancer and other serious illnesses.
The bipartisan legislation intends to set new standards for survivorship care, "ensuring the best and most seamless experience for survivors and their families and caregivers throughout their journey," in the words of the bill summary. "As a 15-year cancer survivor, confronting it head-on with an all-hands-on-deck approach is my personal and professional mission," said Wasserman Shultz.
She said the CSSA will empower cancer survivors because it addresses "the entire survivorship continuum of care." She previously introduced the EARLY Act and created legislation to increase breast cancer education and awareness. In 2009, she shared her own journey with breast cancer.
Rep. Mark DeSaulnier (D-CA), a co-sponsor of the CSSA, said, "As an 8-year survivor of a non-curable treatable blood cancer, I know firsthand how important a seamless continuum of care is." He said he was pleased that the new legislation includes his Cancer Care Planning and Communications Act to help Medicare patients become better empowered about their cancer care. Other co-sponsors include Rep. Brian Fitzpatrick (R-PA), Co-Chair of the Congressional Cancer Caucus; Sen. Benjamin Cardin (D-MD); and Sen. Amy Klobuchar (D-MN). The bill also has many supporting organizations.
Shelley Fuld Nasso, MPP, CEO of the National Coalition for Cancer Survivorship (NCCS), praised the new legislation as ground-breaking. At a press conference to announce introduction of the bill, Nasso noted that, in the NCCS 2022 State of Cancer Survivorship Survey, more than half of cancer survivors said they still experience symptoms 10 years after ending active treatment, but often do not speak to their doctors about these symptoms. As previously reported by Oncology Times, that survey also showed that survivors of color, younger survivors, those of lower socioeconomic status and those with metastatic cancer struggle more at each phase of their cancer journeys.
"Our systems need to adapt to meet the needs of a growing population of long-term cancer survivors, as treatments become more and more effective," said Robert W. Carlson, MD, CEO of the National Comprehensive Cancer Network (NCCN), which supports the bill. He said the CSSA "would address critical gaps, for both adults and children, by providing coverage for vital services to ease the transition from oncology to primary care. These services include cancer care planning and coordination plus new models for workplace support."
"Cancer survivors face many unmet care needs that are complex and include physical and emotional symptoms, concerns about finances and social roles, and limited care coordination," said Stephen D. Nimer, MD, Director of the University of Miami Sylvester Comprehensive Cancer Center, which supports the bill. "Having these standards of survivorship care in place will benefit cancer survivors and their families and caregivers."
"From detection and diagnosis to treatment and long-term support, people living with cancer face numerous challenges in receiving the best possible care," said Andrea Ferris, President and CEO of the LUNGevity Foundation, and a supporter of the new bill. We look forward to working with these congressional champions and our partners in the cancer advocacy community to ensure that these important measures are enacted."
Laura A. Logie, PhD, Director of Research at Nueva Vida, which supports the bill, added that the CSSA "addresses cancer disparities throughout the cancer care continuum and is responsive to the benefits of patient navigation."
"Over the last 20 years we've seen tremendous strides made in the treatment of lymphoma and in understanding of the unique needs of all cancer survivors," said Meghan Gutierrez, CEO of the Lymphoma Research Foundation, which supports the bill. She said the foundation "is committed to the continued support of cancer survivors and their caregivers through survivorship education programs and in funding related research to ensure that more people survive a cancer diagnosis and go on to live full lives."
The second initiative aimed at helping cancer survivors-a new report from the NASEM-stems from a workshop held over a series of six sessions. The report, "Family Caregiving for People with Cancer and Other Serious Illness: Proceedings of a Workshop," was produced by NASEM's Roundtable on Quality Care for People with Serious Illness; the National Cancer Quality Forum; and the Forum on Aging, Disability and Independence. The workshop planning committee co-chair was Randall A. Oyer, MD, Clinical Professor of Medicine at the Perelman School of Medicine, Executive Medical Director of the Ann B. Barshinger Cancer Institute, and Medical Director for the Oncology and the Cancer Risk Evaluation Program at Penn Medicine Lancaster General Health.
As Past President of the Association of Community Cancer Centers, Oyer said in opening remarks at the workshop that, in his 40 years as a physician, he personally has seen the critical impact caregivers make. But he said that in his view, the medical profession "has misunderstood and undervalued this vital role."
The NASEM workshop, which included the caregiver voice throughout, covered strategies to better capture, understand, and act on family caregiver input and experience; research gaps and opportunities to improve the evidence base to guide caregiving for patients with cancer and other serious illness; lessons learned from the COVID-19 pandemic, such as use of telehealth and other remote technology that could be helpful; potential policy and practice opportunities to support family caregivers and advance family-centered care for serious illness, including new models of care delivery and payment; and opportunities to better embed a health equity focus across family caregiving research, policy and practice.
Action items coming from discussions during the NASEM workshop include the following:
[ring operator] The mission to increase public awareness about caregiving and the demands on and needs of caregivers
[ring operator] The need to place the patient and family at the center of all interactions
[ring operator] The importance of addressing trauma and its impact on families, including children and siblings of seriously ill family members
[ring operator] The need to advance racial equity and increase support for family caregivers in underserved areas
[ring operator] The importance of giving family caregivers access to support services for their own mental health
[ring operator] Use of a professional approach that makes sure the person most in need is receiving help and being heard
[ring operator] Identification of which caregivers in a patient's circle are best suited to which tasks
[ring operator] The need to inform caregivers and families about resources and services available to them so they don't have to search on their own
[ring operator] Ensuring that information for caregivers is translated into culturally appropriate materials
[ring operator] Development of a business case that would encourage employers to provide caregiver benefits; and
[ring operator] Use of a comprehensive, evidence-based caregiver assessment involving the whole family to eliminate any internal family discord.
Peggy Eastman is a contributing writer.
Provisions of the Comprehensive Cancer Survivorship Act
* Medicare payment for cancer care planning and coordination to help survivors transition to primary care
* Evaluation and publication of resources to help survivors and health care providers design a personalized plan for follow-up care
* Require the U.S. Department of Health and Human Services (HHS) to conduct a study on an alternative payment model for survivorship care
* Require the HHS to conduct grant-making demonstration programs on survivorship care and on patient navigation services for survivors
* Develop a cancer care survivors workforce assistance program to help survivors with jobs deal with employment challenges
* Implement a requirement that HHS carry out an analysis of adult cancer survivorship
* Implement requirements that HHS help to create best practices for child and teen survivors transitioning to primary care through state innovation programs and a survivorship care demonstration model.