Title II — Maximizing Delivery: Care, Quality of Life, Survivorship, and Caregiver Support

H.R. 820 · 115th Congress · Feb 2, 2017 · Lineage

II Maximizing Delivery: Care, Quality of Life, Survivorship, and Caregiver Support

A Childhood Cancer Survivors’ Quality of Life Act

Sec. 201 Cancer survivorship programs

(a)

Cancer survivorship programs— The Public Health Service Act is amended by inserting after section 399N of such Act (42 U.S.C. 280g–2) the following:

“399N–1. Pilot programs to explore model systems of care for pediatric cancer survivors

“(a) In general—Not later than 1 year after the date of enactment of the Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2017, the Secretary may make awards to eligible entities to establish pilot programs to develop, study, or evaluate model systems for monitoring and caring for childhood cancer survivors throughout their lifespan, including evaluation of shared care and medical home and clinic based models for transition to adult care.

“(b) Eligible entities—In this section, the term eligible entity means—

“(1) a medical school;

“(2) a children’s hospital;

“(3) a cancer center;

“(4) a community-based medical facility; or

“(5) any other entity with significant experience and expertise in treating survivors of childhood cancers.

“(c) Use of funds—The Secretary may make an award under this section to an eligible entity only if the entity agrees—

“(1) to use the award to establish a pilot program to develop, study, or evaluate one or more model systems for monitoring and caring for cancer survivors; and

“(2) in developing, studying, and evaluating such systems, to give special emphasis to—

“(A) design of protocols for different models of follow-up care, monitoring, and other survivorship programs (including peer support and mentoring programs);

“(B) development of various models for providing multidisciplinary care;

“(C) dissemination of information and the provision of training to health care providers about how to provide linguistically and culturally competent follow-up care and monitoring to cancer survivors and their families;

“(D) development of psychosocial interventions and support programs to improve the quality of life of cancer survivors and their families;

“(E) design of systems for the effective transfer of treatment information and care summaries from cancer care providers to other health care providers (including risk factors and a plan for recommended follow-up care);

“(F) dissemination of the information and programs described in subparagraphs (A) through (E) to other health care providers (including primary care physicians and internists) and to cancer survivors and their families, where appropriate; and

“(G) development of initiatives that promote the coordination and effective transition of care between cancer care providers, primary care physicians, and mental health professionals.

“399N–2. Workforce development collaborative on medical and psychosocial care for childhood cancer survivors

“(a) In general—The Secretary shall, not later than 1 year after the date of enactment of the Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2017, convene a Workforce Development Collaborative on Medical and Psychosocial Care for Pediatric Cancer Survivors (referred to in this section as the Collaborative). The Collaborative shall be a cross-specialty, multidisciplinary group composed of educators, consumer and family advocates, and providers of psychosocial and biomedical health services.

“(b) Goals and reports—The Collaborative shall submit to the Secretary a report establishing a plan to meet the following objectives for medical and psychosocial care workforce development:

“(1) Identifying, refining, and broadly disseminating to health care educators information about workforce competencies, models, and curricula relevant to providing medical and psychosocial services to persons surviving pediatric cancers.

“(2) Adapting curricula for continuing education of the existing workforce using efficient workplace-based learning approaches.

“(3) Developing the skills of faculty and other trainers in teaching psychosocial health care using evidence-based teaching strategies.

“(4) Strengthening the emphasis on psychosocial health care in educational accreditation standards and professional licensing and certification exams by recommending revisions to the relevant oversight organizations.

“(5) Evaluating the effectiveness of patient navigators in pediatric cancer survivorship care.

“(6) Evaluating the effectiveness of peer support programs in the psychosocial care of pediatric cancer patients and survivors.”

(b)

Technical amendment—

(1)

In general— Section 3 of the Hematological Cancer Research Investment and Education Act of 2002 (Public Law 107–172; 116 Stat. 541) is amended by striking “section 419C” and inserting “section 417C”.

(2)

Effective date— The amendment made by paragraph (1) shall take effect as if included in section 3 of the Hematological Cancer Research Investment and Education Act of 2002 (Public Law 107–172; 116 Stat. 541).

Sec. 202 Grants to improve care for pediatric cancer survivors

(a)

In general— Section 417E of the Public Health Service Act (42 U.S.C. 285a–11), as amended by section 101, is further amended—

(1)

in the section heading, by striking “research and awareness” and inserting “research, awareness, and survivorship”; and

(2)

by striking subsection (b) and inserting the following:

“(b) Improving care for pediatric cancer survivors

“(1) Research on causes of health disparities in pediatric cancer survivorship

“(A) Research awards—The Director of NIH, in coordination with ongoing research activities, may conduct or support pediatric cancer survivorship research including in any of the following areas:

“(i) Needs and outcomes of pediatric cancer survivors within minority or other medically underserved populations.

“(ii) Health disparities in pediatric cancer survivorship outcomes within minority or other medically underserved populations.

“(iii) Barriers that pediatric cancer survivors within minority or other medically underserved populations face in receiving follow-up care.

“(iv) Familial, socioeconomic, and other environmental factors and the impact of such factors on treatment outcomes and survivorship.

“(B) Balanced approach—In conducting or supporting research under subparagraph (A)(i) on pediatric cancer survivors within minority or other medically underserved populations, the Director of NIH shall ensure that such research addresses both the physical and the psychological needs of such survivors, as appropriate.

“(2) Research on late effects and follow-up care for pediatric cancer survivors—The Director of NIH, in coordination with ongoing research activities, may conduct or support research on follow-up care for pediatric cancer survivors, including in any of the following areas:

“(A) The development of indicators used for long-term patient tracking and analysis of the late effects of cancer treatment for pediatric cancer survivors.

“(B) The identification of risk factors associated with the late effects of cancer treatment.

“(C) The identification of predictors of adverse neurocognitive and psychosocial outcomes.

“(D) The identification of the molecular underpinnings of long-term complications.

“(E) The development of risk prediction models to identify those at highest risk of long-term complications.

“(F) Initiatives to protect cancer survivors from the late effects of cancer treatment, by developing targeted interventions to reduce the burden of morbidity borne by cancer survivors.

“(G) Transitions in care for pediatric cancer survivors.

“(H) Training of professionals to provide linguistically and culturally competent follow-up care to pediatric cancer survivors.

“(I) Different models of follow-up care.

“(J) Examining the cost-effectiveness of the different models of follow-up care.”

Sec. 203 Comprehensive long-term follow-up services for pediatric cancer survivors

Part B of title III of the Public Health Service Act (42 U.S.C. 243 et seq.) is amended by inserting after section 317T the following:

“317U. Standards for comprehensive long-term care for pediatric cancer survivors through the lifespan

“The Secretary may establish a task force to develop and test standards, outcomes, and metrics for high-quality childhood cancer survivorship care in consultation with a full spectrum of representation of experts in late effects of disease and treatment of childhood cancers, including—

“(1) oncologists who treat children and adolescents;

“(2) oncologists who treat adults;

“(3) primary care providers engaged in survivorship care;

“(4) survivors of childhood cancer;

“(5) parents of children who have been diagnosed with and treated for cancer and parents of long-term survivors;

“(6) professionals who are engaged in the development of clinical practice guidelines;

“(7) nurses and social workers;

“(8) mental health professionals;

“(9) allied health professionals, including physical therapists and occupational therapists;

“(10) experts in health care quality measurement and improvement; and

“(11) others, as the Secretary determines appropriate.”

Sec. 204 Survivorship demonstration project

(a)

In general— Not later than 1 year after the date of the enactment of this Act, the Secretary of Health and Human Services (referred to in this section as the “Secretary”) may carry out a demonstration project over a 3-year period, designed to improve the quality and efficiency of care provided to childhood cancer survivors throughout their lifespan, through improved care coordination as survivors transitions to adult care.

(b)

Selection of demonstration sites—

(1)

Maximum number of sites— The maximum number of sites at which the demonstration project under subsection (a) is carried out may not exceed 10.

(2)

Diversity of sites— In selecting entities to participate in the demonstration project, the Secretary may, to the extent practicable, include in such selection—

(A)

small-, medium-, and large-sized sites; and

(B)

sites located in different geographic areas.

(c)

Activities under demonstration project— The activities conducted under the demonstration project under subsection (a) may, in addition to any other activity specified by the Secretary, include activities that seek to develop different models of care coordination, including transitions of care, follow-up care, monitoring, and other survivorship related programs that utilize a multidisciplinary, team based approach to care, including any of the following activities:

(1)

Coordination of care and transitions of care between cancer care providers, primary care physicians, mental health professionals and any other relevant providers.

(2)

Dissemination of information to, and training of, health care providers about linguistically and culturally competent follow-up care specific to cancer survivors.

(3)

Development of monitoring programs for cancer survivors and their families.

(4)

Incorporation of peer support and mentoring programs to improve the quality of life of cancer survivors.

(5)

Designing systems and models for the effective transfer of treatment information and care summaries from cancer care providers to other health care providers (including risk factors and a care plan).

(6)

Evaluation of functional status and incorporation of specific functional needs into the care planning process.

(7)

Dissemination of the information on activities and programs conducted under this section to other health care providers (including primary care physicians) and to cancer survivors and their families, where appropriate.

(8)

Other items determined by the Secretary.

(d)

Measures— The Secretary may use the following measures to assess the performance of each site:

(1)

Patient care and patient/family satisfaction measures.

(2)

Resource utilization measures.

(3)

Adult survivorship measures, as appropriate.

(e)

GAO Report— The Comptroller General of the United States shall submit a report to Congress evaluating the success of the demonstration project. Such report shall include an assessment of the impact of the project upon the quality and cost-efficiency of services furnished to individuals under this title, including an assessment of the satisfaction of such individuals with respect to such services that were furnished under such project. Such report shall include recommendations regarding the possible expansion of the demonstration project.

B Coverage and Payment of High Quality Care

Sec. 211 Report by the Comptroller General

(a)

In general— The Comptroller General of the United States shall conduct a review and submit recommendations to Congress on existing barriers to obtaining and paying for adequate medical care for survivors of childhood cancer.

(b)

Considerations— In carrying out the review and formulating recommendations under subsection (a), the Comptroller General shall—

(1)

identify existing barriers to the availability of complete and coordinated survivorship care for survivors of childhood cancer and to the availability of expert pediatric palliative care, including consideration of—

(A)

understanding and education among patients, health care providers, regulators, and third-party payors;

(B)

adequacy of payment codes to cover necessary survivorship services;

(C)

access to necessary medical and other services for such survivors, including the services described in subsection (c); and

(D)

lack of pediatric palliative care across all stages of illness and hospice services for patients approaching the end of life; and

(2)

make recommendations to provide improved access and payment plans for childhood cancer survivorship programs and palliative care, including psychosocial services and coverage of such services.

(c)

Services described— The services described in this subsection are the following:

(1)

Coordinated multidisciplinary long-term follow-up care with access to appropriate pediatric subspecialists and adult subspecialists with specific expertise in survivorship, including subspecialists with expertise in oncology, radiation oncology, surgery, cardiology, psychiatry or psychology, endocrinology, pulmonology, nephrology, dermatology, gynecology, and urology.

(2)

Appropriate organ function testing (particularly screening for potential problems at much younger ages than usually indicated in the general population) and treatment, including—

(A)

neuropsychological testing and mental health services;

(B)

fertility testing and treatment;

(C)

evaluation and treatment for endocrine disorders including growth hormone and testosterone replacement;

(D)

diagnostic imaging to screen for late effects of treatment (including subsequent cancers), such as mammograms and magnetic resonance imaging testing to screen for possible breast cancer;

(E)

screening for cardiac problems, such as echocardiograms;

(F)

screening for osteoporosis with bone densitometry, including duel x-ray absorptiometry and monitoring 25-hydroxyvitamin D levels;

(G)

dental coverage and necessary dental implants;

(H)

hearing aids and other prosthetic devices; and

(I)

screening for lung problems, such as pulmonary function testing.