Comprehensive Cancer Survivorship Act
A BILL
To address the health of cancer survivors and unmet needs that survivors face through the entire continuum of care from diagnosis through active treatment and posttreatment, in order to improve survivorship, treatment, transition to recovery and beyond, quality of life and palliative care, and long-term health outcomes, including by developing a minimum standard of care for cancer survivorship, irrespective of the type of cancer, a survivor’s background, or forthcoming survivorship needs, and for other purposes.
Sec. 2 Findings
Congress finds the following:
A cancer survivor is any individual with a history of cancer, from the time of diagnosis through the rest of their life, across the continuum of care.
Today, there are approximately 18,000,000 Americans who are cancer survivors, and the number of survivors is projected to reach 26,000,000 by 2040. Therefore, there is a great need to be able to provide ways to sustain the care needed and to offer those living with, through, and beyond cancer a safe, supportive, and accommodating environment where such individuals can engage in physical and social support activities to sustain optimal quality of life.
Cancer survivors face difficult emotional, psychological, neurological, financial, and other physical challenges that persist beyond diagnosis and treatment, often arising months and years after active cancer treatment ends.
Cancer survivors have unique needs and must manage short- and long-term effects of their treatment, as well as regular screenings for cancer recurrence or new cancers.
Cancer survivors of racial and ethnic diversity have disproportionately lower health-related, quality-of-life scores compared to non-Hispanic White cancer survivors.
Cancer survivors living in rural areas have less access to services and have poorer outcomes than survivors in metropolitan areas.
Children, adolescent, and young adult cancer survivors are particularly susceptible to long-term consequences from treatment, and up to 80 percent have a severe, disabling, life-threatening, or fatal health condition by the age of 50. Best practices in this area would improve treatment, quality of life, and long-term health outcomes.
Clinical trials have shown that cancer survivorship programs help cancer survivors meet or exceed the recommended amount of physical activity, significantly increasing their cardiovascular health and overall quality of life and decreasing their cancer-related fatigue.
Survivorship care refers to the medical or psychosocial care of an individual who has completed their primary treatment for cancer, or of an individual who is undergoing maintenance or intermittent medical treatment or maintenance psychosocial care for cancer, or of an individual living with metastatic disease under continuous medical or psychosocial treatment.
Despite the National Cancer Institute and other professional organizations’ definition of a cancer survivor beginning on the day of a cancer diagnosis, there is little agreement among clinicians, researchers, and insurance companies on what services are included in “survivorship care” and the point at which “survivorship care” begins.
Cancer survivors, their families, their caregivers, and their providers face many difficulties understanding and coordinating the transition from specialty to primary care, and for this reason communication and treatment are often fragmented and inconsistent.
To avoid additional health-related or financial hardships to cancer survivors and their families, comprehensive and forward-thinking cancer survivorship studies and programs across Federal agencies are required to engage in a coordinated effort to improve health outcomes and quality of life of survivors.
Sec. 3 Definitions
In this Act:
Cancer survivor— The term cancer survivor means anyone who remains alive from the time of a cancer diagnosis.
Caregiver— The term caregiver means a family member, friend, or other person who cares for an older person or adult with a chronic or disabling condition, including cancer.
Patient experience data— The term patient experience data means patient experiences, perspectives, needs, and priorities related to—
the symptoms of the patient’s conditions and the natural history of such conditions;
the impact of the conditions on the patient’s functioning and quality of life;
the patient’s experience with treatments;
input on which outcomes are important to the patient;
patient preferences for outcomes and treatments; and
the relative importance of any issues as defined by patients.
Psychosocial effects— The term psychosocial effects—
means the psychological, behavioral, emotional, and social effects of a disease, such as cancer, and its treatment; and
in the case of such effects of cancer, includes changes in how a patient thinks, their feelings, moods, beliefs, ways of coping, and relationships with family, friends, and coworkers.
Psychosocial care— The term psychosocial care means psychological and social services and interventions that enable survivors, patients, their families, and health care providers to optimize health care and to manage the psychological, behavioral, physical, emotional, and social aspects of illness and its consequences so as to promote better health and well-being.
Secretary— Except as otherwise specified, the term Secretary means the Secretary of Health and Human Services.
Survivorship— The term survivorship means the period from the time of cancer diagnosis until the end of life, including any portions of such period during which interventions are necessary to address—
the physical, mental, emotional, social, and financial effects of cancer that begin at diagnosis and continue through treatment and beyond; and
issues related to follow-up care (including regular health and wellness checkups), late and long-term effects of treatment, screening for cancer recurrence and new cancers, and quality of life.
Survivorship care plan— The term survivorship care plan—
means an individualized care plan for patients who have been treated for cancer; and
includes a treatment summary and any follow-up care guidelines in such plan that—
are for monitoring and maintaining the patient’s medical and psychosocial health and well-being; and
are meant to be a transition and communication tool for the survivor, their family, their caregiver, and all their health care providers.
Survivorship navigation— The term survivorship navigation means a service that—
helps patients overcome health care system and social determinants of health barriers; and
provides patients with timely access to high-quality medical, physical, and psychosocial care from their cancer diagnosis through all phases of their cancer experience.
Treatment summary— The term treatment summary means a detailed summary of a patient’s disease, the types of treatment the patient received, members of the patient’s care team, and any side effects or other problems, including psychosocial effects, caused by treatment.
Sec. 4 Coverage of cancer care planning and coordination services
in subsection (s)(2)—
by striking “and” at the end of subparagraph (GG);
by adding “and” at the end of subparagraph (HH); and
by adding at the end the following new subparagraph:
“(II) cancer care planning and coordination services (as defined in subsection (lll))”
by adding at the end the following new subsection:
“(lll) Cancer Care Planning and Coordination Services
“(1) The term cancer care planning and coordination services means, with respect to an individual who is diagnosed with cancer, the development of a treatment plan by a physician, physician assistant, or nurse practitioner that—
“(A) includes each component of the Institute of Medicine Care Management Plan (as described in the article entitled “Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis” published by the Institute of Medicine);
“(B) is furnished in written form or electronically, at the visit of such individual with such physician, physician assistant, or nurse practitioner, or as soon after the date of the visit as practicable; and
“(C) is furnished, to the greatest extent practicable, in a form that appropriate takes into account cultural and linguistic needs of the individual in order to make the plan accessible to the individual.
“(2) The Secretary shall establish frequencies at which services described in paragraph (1) may be furnished, provided that such services may be furnished with respect to an individual—
“(A) at the time such individual is diagnosed with cancer for purposes of planning treatment;
“(B) if there is a change in the condition of such individual or such individual’s treatment preferences;
“(C) at the end of active treatment and beginning of survivorship care; and
“(D) if there is a recurrence of such cancer.”
Payment under physician fee schedule—
In general— Section 1848(j)(3) of the Social Security Act (42 U.S.C. 1395w–4(j)(3)) is amended by inserting “(2)(II),” after “health risk assessment),”.
Initial rates— Unless the Secretary otherwise provides, the payment rate specified under the physician fee schedule under the amendment made by paragraph (1) for cancer care planning and coordination services shall be the same payment rate as provided for transitional care management services (as defined in CPT code 99496).
Effective date— The amendments made by this section shall apply to services furnished on or after the first day of the first calendar year that begins after the date of the enactment of this Act.
Sec. 5 Survivorship transition tools
In general— The head of the Office of the National Coordinator for Health Information Technology, in collaboration with Director of the Agency for Healthcare Research and Quality, shall—
evaluate existing models for survivorship care plans, as they relate to both adults and children, through engagement with professional societies, payors, patient advocacy organizations, community-based organizations, electronic health record vendors, and other stakeholders;
evaluate other existing tools for developing survivorship care plans, such as—
survivorship guidelines of the National Comprehensive Cancer Network and the American Society of Clinical Oncology; or
tools such as Passport for Care;
collaborate with the Office for Civil Rights of the Department of Health and Human Services to evaluate the privacy and security implications of—
consolidating treatment history and survivorship guidelines into a personalized survivorship care plan, as described in paragraph (4); and
patient use of computer or mobile phone-based application programs described in paragraph (4)(B); and
taking into consideration the results of evaluation under paragraphs (1) and (2)—
not later than 12 months after the date of enactment of this Act, publish information resources for cancer patients and providers on strategies for consolidating treatment history and survivorship guidelines into a personalized survivorship care plan to guide survivorship monitoring and follow-up care; and
include in such information resources recommendations about possible patient use of application programs (“apps”) to develop personalized survivorship care plans.
Definition— In this section, the term electronic health record means an electronic record of health-related information on an individual that is created, gathered, managed, and consulted by authorized health care clinicians and staff.
Sec. 6 Alternative payment model
Not later than 18 months after the date of the enactment of this Act, the Secretary shall submit to Congress a report containing a description of an alternative payment model for payment under title XVIII and title XIX of the Social Security Act (42 U.S.C. 1395 et seq., 1396 et seq.) for items and services relating to cancer survivorship care. The report shall include the following:
A description of what event would trigger an individual’s entry into such a model (such as the end of the individual’s active cancer treatment, the beginning of the individual’s need for supportive care during active treatment, or another event).
The length of the individual’s participation under such model, including a description of any ability to extend such participation.
In the case that such model is based on an episode of care, the appropriate length of the survivorship episode of care and whether additional episodes may be triggered, if necessary.
Strategies to ensure that any episode of care under such a model begins with the development and dissemination of a survivorship care plan for the transition from active cancer treatment to follow-up care to the individual and all relevant health care providers.
A description of any bundled payment packages that will be used under such model.
A specification of any follow up or new screening under such model for unmet needs of individuals participating in such model.
How consistent, shared decision making will be promoted under such model so that individuals are given the knowledge needed for self-management between episodes of care.
A specification of which types of health care providers may furnish items and services under such model, including genetic counselors and mental health professionals.
Strategies for applying evidence-based risk stratification principles to direct survivors to personalized care pathways that match the level of care needed to the relative risks and needs of the survivor.
Strategies for coordination of care between such providers, such as between specialists and primary care providers, and how principal responsibility will be assigned for an episode of care.
Strategies for addressing social determinants of health through such model.
A description of how such model will promote—
prevention, early detection surveillance, and treatment for individuals continuing to receive systemic therapy after the end of active cancer treatment;
such individuals’ understanding of, and access to, treatment;
survivorship research; and
the continuing health of cancer survivors.
An analysis of how different forms and stages of cancer may require the development of different survivorship plans and alternative payment models based on varying episodes of care.
A plan for testing any alternative payment model described in the report, including the timing of such testing, an analysis of the impact of such testing, any barriers to implementing such testing, and any other recommendations determined appropriate by the Secretary.
Sec. 7 Survivorship navigation
Review of programs and navigation study—
In general— Not later than 18 months after the date of enactment of this Act, the Secretary shall—
complete a review of previous and current cancer survivorship navigation programs, including any applicable standards of care such as those of the Professional Oncology Navigation Task Force, and the Academy of Oncology Nurse & Patient Navigators, the Oncology Nursing Society; and
submit a report to the Congress on the results of such review.
Considerations— In carrying out subsection (a), the Secretary shall take into consideration each of the following:
How cancer survivorship navigation program services might be provided from diagnosis across the continuum of care through survivorship, taking into consideration—
the type of navigation services that are most effective for survivors at the time of diagnosis; and
the type of navigation services that are most useful for survivors who are managing the late and long-term effects of cancer and cancer treatment.
How navigation services might evolve over the continuum of care and how to encourage a dynamic navigation system.
Training needs for navigators.
Comparison and delineation of navigation services provided by lay and professional navigators.
Evaluation of optimal strategies for offering survivors navigation services and encouraging their utilization of such services.
Defining—
the continuum of care during which services are provided; and
the nature of services for a long-term survivor.
The location of navigation services (such as whether such services should be provided as part of oncology practices or outside of oncology practices).
Federal financing for navigation services (such as whether to finance such services through a grant program funded through annual discretionary appropriations).
Alternative delivery and payment models for cancer survivorship navigation services, including consideration of—
an episode-of-care model for providing cancer survivorship navigation services, or a patient-focused navigation benefit that survivors could utilize in different settings, with the navigation services meeting standards set by the Secretary; and
services funded through the Medicare and Medicaid programs.
Resources and the role of patient advocacy organizations and peer support networks in cancer survivorship navigation services.
Demonstration program for navigation services for cancer survivors—
In general— The Secretary shall carry out a demonstration program consisting of awarding grants to eligible entities to provide navigation services to cancer survivors.
Timing— The Secretary shall initiate the demonstration program under this subsection not later than 12 months after completing the review as required under subsection (a)(1)(A).
Eligible entities— To be eligible to receive a grant under this subsection, an entity shall—
have staff and expertise to provide navigation services; and
be—
a community-based organization;
a patient-centered education and service organization;
a nonprofit patient or cancer advocacy organization;
a community cancer provider;
a cancer center;
a hospital;
a community health center; or
another type of entity as the Secretary determines appropriate.
Use of funds— A recipient of a grant under this section shall use the grant to provide navigation services to cancer survivors, including by—
offering navigation services from diagnosis through the continuum of care, including long-term survivorship, or offering navigation services from the end of active treatment with an emphasis on facilitating the transition from active treatment to long-term survivorship care and throughout survivorship;
in a timely manner, assisting cancer survivors to navigate cancer treatment and follow-up services, such as screenings, risk assessment, mitigation, health promotion activities, providing health information and education, coaching, and support;
addressing cancer care disparities in the design and delivery of services;
ensuring coordination with the survivor’s health care providers;
following evidence-based survivorship care guidelines in the design and delivery of survivorship services;
ensuring the delivery of culturally appropriate services and materials; and
assisting cancer survivors to meet and overcome barriers to treatment and follow-up services, such as any such barriers relating to food insecurity, housing, transportation, labor, access to broadband connectivity, the availability of telehealth, or child care, with emphasis placed on high-risk populations.
Sec. 8 Survivorship care demonstration program
In general— The Secretary shall carry out a demonstration program for a period of 5 years consisting of awarding grants to improve the quality of cancer survivorship care.
Timing— The Secretary shall initiate the demonstration program under this section not later than 1 year after the date of enactment of this Act.
Demonstration sites— The Secretary shall ensure that grants are awarded under this section to improve the quality of cancer survivorship care at a wide diversity of sites, including—
in urban, suburban, rural, and Tribal areas; and
cancer care sites including cancer centers, academic health centers, Federally qualified health centers, rural health clinics, physician offices, Tribal organizations, community-based health care providers, and health care providers serving medically underserved areas.
Areas of focus under the demonstration program— The demonstration program under this section shall be designed to ensure the development of a variety of models for survivorship care that will permit evaluation of a variety of care strategies, including—
utilization of navigators to assist survivors in obtaining survivorship care;
employment of risk-stratification to better determine the nature and intensity of services that survivors require;
transitions of care from cancer care providers to primary care providers, through transition-of-care models that involve collaboration between cancer care specialists and primary care providers;
the training needs of primary care providers to be better equipped to work with survivors in primary care settings;
utilization of survivorship care plans to facilitate coordination of survivorship care;
experimentation with providing cancer survivorship care at home;
use of information technology to plan and coordinate care to improve the consistent identification, collection, and measurement of all forms of patient experience data, including patient-reported outcomes of patient-reported symptoms and quality-of-life measures; and
expansion of existing successful models of survivorship care.
Evaluation of demonstration program— The Secretary shall—
develop a plan for evaluating the projects that are conducted as part of the demonstration program under this section; and
not later than 18 months after the end of the 5-year demonstration program, complete such evaluation and submit a report to the Congress on the results of such evaluation.
Sec. 9 Cancer survivor workforce assistance grants
In general— The Secretary of Labor, in consultation with the Secretary of Health and Human Services, shall carry out a program to award grants to nonprofit organizations and other entities to provide education and targeted assistance—
to eligible cancer survivors facing barriers to employment, including those who remain in the workforce during treatment, those who reduce working hours while in treatment, and those who reenter the workforce after a treatment-related departure; and
to the families and caregivers of such eligible cancer survivors.
Program components— The program under this section shall include the following:
Assistance, career and training services, and supportive services for eligible cancer survivors who stay in the workforce during treatment, and for their families and caregivers, including—
transportation assistance;
childcare assistance;
nutritional assistance;
physical activity assistance;
psychosocial assistance;
financial assistance during a period of medical leave; and
other similar assistance.
Assistance and education for eligible cancer survivors who leave the workforce during treatment, and for their families and caregivers, including—
financial assistance during a period of medical leave;
assistance with premiums for continuation coverage provided pursuant to part 6 of subtitle B of title I of the Employee Retirement Income Security Act of 1974 (29 U.S.C. 1161 et seq.), title XXII of the Public Health Service Act (42 U.S.C. 300bb–1 et seq.), or section 4980B of the Internal Revenue Code of 1986 (26 U.S.C. 4980B); and
career and training services, including upskilling and reskilling, for eligible cancer survivors who are not able to return to work after treatment.
Assistance, career and training services, and supportive services for eligible cancer survivors who are unable to work after a cancer diagnosis, and their families and caregivers, including—
assistance in applying for—
supplemental security income benefits under title XVI of the Social Security Act (42 U.S.C. 1381 et seq.);
disability insurance benefits under section 223 of the Social Security Act (42 U.S.C. 423);
benefits under a State plan, or waiver of such plan, under title XIX of the Social Security Act (42 U.S.C. 1396 et seq.);
with respect to minimizing delays in eligibility before a cancer survivor becomes eligible for Medicare coverage, benefits under the Medicare program under title XVIII of the Social Security Act (42 U.S.C. 1801 et seq.), including with respect to enrolling in plans under part C or D of such title and supplemental plans under section 1882 of such title;
State and private sector assistance programs for such cancer survivors; and
career and training services available under title I, II, or IV of the Workforce Innovation and Opportunity Act (29 U.S.C. 3101 et seq.); and
information on the eligibility of a cancer survivor, and their families and caregivers, for benefits or services described in any of clauses (i) through (vi) of subparagraph (A).
Evidence-Based resources— In carrying out this section, the Secretary of Labor, in consultation with the Secretary of Health and Human Services, shall use evidence-based resources, including—
nationally recognized evidence-based guidelines; and
other resources as determined by the Secretary.
Definitions— In this section:
The term eligible cancer survivor means a cancer survivor (as defined in section 3) who—
remains in the workforce during cancer treatment;
reduces working hours during cancer treatment;
reenters the workforce after a cancer treatment-related departure; or
leaves the workforce as the result of a cancer diagnosis or related complications.
The term supportive services has the meaning given such term in section 3 of the Workforce Innovation and Opportunity Act (29 U.S.C. 3102).
Sec. 10 Comprehensive cancer survivorship program
In general— The Secretary shall carry out a comprehensive cancer survivorship program that includes—
a cancer survivorship resource center in accordance with subsection (b) to provide evidence-based resources to cancer survivors, their families, and their caregivers;
a health care professional resource center in accordance with subsection (c) to assist and educate health care professionals in the delivery of high-quality survivorship care;
an educational campaign in accordance with subsection (d) to provide health care professionals with resources to improve cancer survivorship care; and
a program of supportive care services in accordance with subsection (e) to improve the quality of life and long-term survivorship of cancer survivors.
Cancer survivorship resource center—
Establishment— The Secretary shall establish and operate a survivorship resource center (in this subsection referred to as the “Center”) that serves as a comprehensive source of information and resources related to survivorship.
Timing— Not later than 2 years after the date of enactment of this Act, the Secretary shall establish and begin operation of the Center.
Consultation— In establishing and operating the Center, the Secretary shall consult with cancer survivors, patient organizations, health professionals, researchers, health education organizations, oncology professional societies and other medical societies, community-based organizations, and science education organizations regarding—
the information and resources that would assist cancer survivors in managing the survivorship experience and obtaining high-quality care across the continuum of care;
gaps in such information and resources that need to be addressed to respond to the needs of cancer survivors; and
optimal strategies for ensuring that cancer survivors have access to the Center, including strategies that provide virtual options, online resources, and marketing.
Use of available evidence-based resources— In establishing and operating the Center, the Secretary shall, with permission and attribution, rely on and utilize the evidence-based materials and resources developed, collected, and distributed by cancer organizations.
Health care professional resource center—
In general— The Secretary shall establish and operate a health care professional resource center (in this subsection referred to as the “Center”) that serves as a comprehensive source of information and resources to assist health care professionals in the delivery of high-quality survivorship care.
Reference cancer survivorship guidelines— In establishing and operating the Center, the Secretary shall reference cancer survivorship guidelines developed by cancer care professional societies, patient organizations, research foundations, and other health care professional societies in the development of materials related to survivorship care.
Support partnerships between cancer specialty societies and primary care provider organizations— In establishing and operating the Center, the Secretary shall facilitate collaboration between cancer care specialty societies and primary care provider organizations in the development of standards for survivorship care, including standards for coordination of care and transitions of care from active treatment to long-term survivorship care.
Campaign To educate survivors and health care professionals in survivorship care—
In general— The Secretary acting through the Director of the Centers for Disease Control and Prevention (in this subsection referred to as the “Secretary”) shall—
expand educational programs and services to—
health care professionals; and
cancer survivors, their families, and caregivers; and
enhance the continuing medical education resources on cancer survivorship that are available to health care professionals.
Expand collaboration with Comprehensive Cancer Control National Partnership and other organizations for survivorship education and support—
In general— The Secretary shall expand collaborations with organizations that are part of the Comprehensive Cancer Control National Partnership and other organizations to focus on increasing education and awareness related to cancer survivorship through materials, resources, and other methods as necessary.
Collaborate with the organizations in the National Partnership and other organizations— The Secretary shall collaborate with the organizations that are part of the Comprehensive Cancer Control National Partnership and other organizations to inform cancer survivors of survivorship monitoring and follow-up standards, availability of survivorship care services, and how to access these services.
Reference the survivorship standards of care developed and published by cancer organizations— In collaboration with the organizations that are part of the Comprehensive Cancer Control National Partnership, the Secretary shall—
develop and implement a plan to distribute survivorship educational materials to ensure that such materials are accessible to all cancer survivors, their families and caregivers, and health care professionals; and
reference in such plan the survivorship standards of care developed and published by such organizations.
Continuing medical education—
In general— The Secretary shall carry out a program to support the development of continuing medical education programs for survivorship care that utilize and rely on the guidelines for survivorship care developed and published by national organizations.
Timing— Not later than 12 months after the date of enactment of this Act, the Secretary shall initiate the program required by subparagraph (A).
Grants for development of curriculum for survivorship continuing medical education—
In general— The Secretary shall award grants to eligible entities for development of diverse, equitable, and culturally appropriate curricula for survivorship care curriculum for medical care.
Eligible entities— In this subparagraph, the term eligible entity includes a medical professional society, a patient organization, an academic institution, a cancer center, and any other entity with experience in continuing medical education for cancer professionals.
Scope of curriculum— To receive a grant under this section, an applicant shall demonstrate its ability to develop survivorship care curriculum for medical care, taking into consideration services from the legal, social work, public health, behavioral sciences, genetic, epidemiology, and nursing fields.
Public awareness campaign— The Secretary, at an appropriate time after the availability of patient survivorship materials, professional survivorship materials, and continuing medical education programs under this subsection, shall initiate a linguistically and cultural appropriate public awareness campaign that targets the organization's catchment area to ensure that cancer survivors, their families and caregivers, health care professionals, and the public are aware of the scope of survivorship educational and informational resources available from the Centers for Disease Control and Prevention.
Cancer survivorship quality-of-Life program—
In general— The Secretary acting through the Director of the Centers for Disease Control and Prevention (in this subsection referred to as the “Secretary”) shall carry out a program of awarding grants to eligible entities to provide services to cancer survivors to enhance their quality of life and improve their long-term survival rates. Not later than 18 months after the date of enactment of this Act, the Secretary shall commence operating such program.
Eligible entity defined— In this subsection, the term eligible entity includes an entity that is—
a State comprehensive cancer program;
a National Cancer Institute-designated cancer center or centers; or
a community-based organization, including a patient advocacy organization, that—
has the capacity to reach cancer survivors through local, State, or national organizations; and
is focused on cancer survivors and strategies for meeting their needs related to their health and well-being.
Use of funds— A grant received under this subsection shall be used to provide services to cancer survivors to enhance their quality of life and improve their long-term survival rates, such as by assisting survivors to—
engage in moderate physical activity and other health-promoting activities, including ceasing tobacco use and increasing consumption of healthy foods;
increase access to support services to mitigate anxiety, depression, and uncertainty;
utilize community support services to fully implement survivorship care plans;
access nutrition education and counseling; and
adhere to a schedule for, and access, screening for recurrence of cancer or the occurrence of other primary cancers.
Standards for application from eligible entities— To seek a grant under this subsection, an eligible entity shall submit an application, at such time as may be required by the Secretary, that includes—
an explanation of how the entity will—
provide cancer survivors access to cancer patient navigator services;
overcome barriers to care for communities of color and multilingual communities;
provide culturally competent care; and
work with and support caregivers of cancer survivors;
a description of how the entity receives referrals of cancer survivors from health care professionals, including health care professionals serving historically disadvantaged and underserved communities;
documentation of the curriculum that will be used for providers in the program, including mechanisms to update the staff on curriculum changes; and
an agreement to provide the Secretary semiannual reports on—
the number of participants served;
quality-of-life measures for participants; and
plans for fostering communication between oncology and non-oncology providers serving participants.
Responsibilities of the Secretary— The Secretary shall—
conduct outreach to inform health care professionals of the availability of programs and activities funded under this subsection;
analyze the data submitted by grantees under this subsection to determine the number of cancer survivors served and the impact of the program under this subsection on their quality of life; and
share best practices among all grantees under this subsection.
Sec. 11 Adult cancer survivorship study
In general— Not later than 18 months after the date of enactment of this Act, the Secretary shall complete a landscape analysis that—
assesses the potential benefits of an adult version of the Childhood Cancer Survivor Study;
assesses the financial costs and other burdens associated with an adult cancer survivor study;
identifies sources of data on adult cancer survivors;
identifies gaps in data on adult cancer survivors, compared to data collected in the Childhood Cancer Survivor Study; and
identifies strategies to publish data on adult cancer survivors derived from research that is conducted or supported by the National Cancer Institute, in a manner that is accessible to cancer survivors, health care professionals, researchers, and the public.
Report— Not later than 6 months after the date of completion of the feasibility analysis under subsection (a), the Secretary shall submit to the Congress a report on the results of such feasibility analysis.
Sec. 12 Survivorship progress report
In general— Not later than 6 months after the date of enactment of this Act, the Secretary shall enter into an agreement with the Government Accountability Office to conduct a study of the progress made in cancer survivorship over the period beginning on the date of enactment of the National Cancer Act of 1971 (Public Law 92–216).
Scope of the study— The study under subsection (a) shall investigate developments over the period described in subsection (a) in—
the nature and quality of survivorship care;
transitions from active treatment to survivorship care;
the quality of life of cancer survivors;
outcomes for cancer survivors;
disparities in access to care and survivorship outcomes;
the health care systems for providing survivorship care;
the contribution of community-based services to the survivorship care system; and
payment for survivorship care by public and private third-party payors.
Role of Office of Cancer Survivorship— The study under subsection (a) shall—
consider the contribution of the Office of Cancer Survivorship to the evolution of cancer survivorship care over the last 25 years; and
assess the impact of the mission of the Office and the resources provided to the Office on its leadership in cancer survivorship care.
Public meeting— In conducting the study under subsection (a), the Comptroller General of the United States shall hold a public meeting with a broad cross section of stakeholders to inform the study’s findings and conclusions. Such stakeholders shall include—
cancer survivors;
patient organizations representing cancer survivors;
oncologists involved in survivorship care and the professional societies representing them;
primary care providers involved in survivorship care and the professional societies representing them;
other health professionals providing survivorship care and the professional societies representing them;
community-based organizations involved in survivorship care;
representatives of the National Cancer Institute;
third-party payors;
researchers engaged in survivorship research;
epidemiologists with knowledge of trends in cancer survivorship; and
such other stakeholders as the Comptroller General deems important to participate in the public meeting.
Report— The Comptroller General of the United States shall—
release a report on the results of the study under subsection (a); and
in addition to the public meeting convened under subsection (d)—
convene another public meeting to be held on the day of the release of the report; and
include in such meeting all categories of stakeholders listed in subsection (d).
Sec. 13 Promoting State innovations to ease transitions to the primary care setting for children with cancer
Stakeholder group development of best practices; State Medicaid and CHIP program innovation—
Stakeholder group best practices— Not later than 12 months after the date of the enactment of this Act, the Secretary of Health and Human Services (in this section referred to as the “Secretary”) shall convene a stakeholder group of representatives of childhood cancer advocacy organizations, Medicaid and CHIP beneficiaries, providers with childhood cancer expertise, the National Association of Medicaid Directors, and other relevant representatives to develop best practices (and submit to the Secretary and Congress a report on such best practices) for States to ease the transition from active oncological care to primary care of children or adolescents with cancer, including best practices for ensuring development of and delivery of survivorship care plans to patients, families, and primary care providers and best practices for such transitions occurring under the State Medicaid plan under title XIX of the Social Security Act (42 U.S.C. 1396 et seq.) or State child health plan under title XXI of such Act (42 U.S.C. 1397aa et seq.), as applicable. Such best practices shall include practices to ensure that—
cancer care providers transfer diagnosis and treatment information to patient primary care providers;
cancer care providers develop an individualized survivorship care plan of potential late effects;
cancer care providers deliver the plan to the patient and family members through an in-person visit;
cancer care providers deliver the plan to the primary care provider through electronic health records or other means; and
relevant health entities develop systems that promote the coordination and effective transition of care between cancer care providers, primary care physicians, and other health care professionals.
State Medicaid and CHIP program innovation— The Secretary shall work with States on innovative strategies, based on the best practices developed under on the best practices identified under the process described in subsection (a)(1), to ease the transition from active oncological care to primary care of child or adolescent with cancer ensuring development of and delivery of survivorship care plans to patients, families, and primary care providers and transition coverage under the State Medicaid plan under title XIX of the Social Security Act (42 U.S.C. 1396 et seq.) or State child health plan under title XXI of such Act (42 U.S.C. 1397aa et seq.), as applicable.
Guidance on innovative service delivery systems demonstration project opportunities— Not later than 1 year after the date the stakeholder group is convened under subsection (a), the Secretary, acting through the Administrator of the Centers for Medicare & Medicaid Services, shall issue guidance to State health officials, based on best practices developed under subsection (a)(1), regarding opportunities to design demonstration projects under the Social Security Act to improve care transitions for children and adolescents with cancer who transition from oncological care to primary care and who are otherwise eligible to receive medical assistance under title XIX of such Act (42 U.S.C. 1396 et seq.) or title XXI of such Act (42 U.S.C. 1397aa et seq.).
Nonapplication of Federal Advisory Committee Act— The Federal Advisory Committee Act shall not apply to the stakeholder group convened under paragraph (1).
Sec. 14 Childhood cancer demonstration model and standard of care
Section 1115A(b)(2) of the Social Security Act (42 U.S.C. 1315a(b)(2)) is amended—
in subparagraph (A), by striking the period at the end and inserting “, and shall include the model described in clause (xxviii) of such subparagraph.”; and
in subparagraph (B), by adding at the end the following new clause:
“(xxviii) A local service delivery and State payment model for individuals up to age 21 enrolled under a State plan (or waiver of such plan) under title XIX or a State child health plan (or waiver of such plan) under title XXI of such Act (42 U.S.C. 1397aa et seq.) who have been diagnosed with cancer and who are in the survivorship phase of their treatment. Such model shall—
“(I) provide for the creation of a survivorship plan, that can be integrated into an electronic health record, for such individuals and disseminate the plan to such individuals, families of such individuals, and the health providers of such individuals;
“(II) offer States and local providers technical assistance to develop and implement different survivorship care planning services;
“(III) develop a standard of care based on the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers to manage the transition of such individuals from active treatment to general care with the informed knowledge of such individuals; and
“(IV) provide incentives to health care providers for treating such individuals through such model that includes at least two survivorship care planning visits.”
Sec. 15 Medicaid coverage of fertility preservation services for cancer patients
Medicaid—
in paragraph (30), by striking “and” at the end;
by redesignating paragraph (31) as paragraph (32); and
by inserting after paragraph (30) the following new paragraph:
“(31) standard fertility preservation services (as specified by the Secretary consistent with established medical practices and professional guidelines published by the American Society for Reproductive Medicine, the American Society of Clinical Oncology, or other professional medical organizations specified by the Secretary) for individuals diagnosed with cancer who—
“(A) are undergoing treatment for such cancer where such treatment may lead to iatrogenic infertility;
“(B) previously underwent such treatment and may be at risk of such infertility due to such treatment; or
“(C) are preparing to undergo such treatment where such treatment may lead to such infertility.”
Mandatory benefit— Section 1902(a)(10)(A) of the Social Security Act (42 U.S.C. 1396a(a)(10)(A)) is amended by striking “and (30)” and inserting “(30), and (31)”.
CHIP—
In general— Section 2103(c) of the Social Security Act (42 U.S.C. 1397cc(c)) is amended by adding at the end the following new paragraph:
“(12) Required coverage of fertility preservation services for cancer patients—Regardless of the type of coverage elected by a State under subsection (a), the child health assistance provided for a targeted low-income child, and, in the case of a State that elects to provide pregnancy-related assistance pursuant to section 2112, the pregnancy-related assistance provided for a targeted low-income pregnant woman (as such terms are defined for purposes of such section), shall include coverage of standard fertility preservation services (as described in section 1905(a)(31)) for individuals described in such section.”
Conforming amendment—
In general— Section 2103(c) of the Social Security Act (42 U.S.C. 1397cc(c)) is amended by redesignating the paragraph (12) added by section 11405(b)(1) of Public Law 117–169 as paragraph (13).
Effective date— The amendment made by subparagraph (A) shall take effect on October 1, 2023.
Effective date— The amendments made by this section (other than the amendment made by subsection (b)(2)) shall apply with respect to medical assistance, child health assistance, and pregnancy-related assistance furnished on or after the date that is 18 months after the date of the enactment of this Act.