I 111th CONGRESS 2d Session H. R. 5560 IN THE HOUSE OF REPRESENTATIVES June 17, 2010 Mr. Moore of Kansas (for himself, Ms. Berkley, Mr. Berman, Mr. Cao, Mr. Clay, Mr. Cleaver, Mr. Conyers, Mr. Lincoln Diaz-Balart of Florida, Ms. Edwards of Maryland, Mr. Ellison, Mr. Frank of Massachusetts, Ms. Kilroy, Mr. LoBiondo, Mrs. McCarthy of New York, Mr. Markey of Massachusetts, Mr. Meeks of New York, Ms. Moore of Wisconsin, Ms. Richardson, Ms. Schakowsky, Mr. Spratt, and Ms. Waters) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To amend the Public Health Service Act to improve quality of cancer care and quality of life for patients and survivors by coordinating development and distribution of information about relieving pain, symptoms, side effects, and stress; increasing awareness of treatment and post-treatment health risks for survivors; enhancing research into symptom management and survivorship; increasing health care professional education and training; reducing health disparities in cancer treatment, symptom management, and survivorship care; and expanding and enhancing cancer registries; and for other purposes.
1.
Short title
This Act may be cited as the Quality Cancer Care for Life Act of 2010.
2.
Improving quality of cancer care and quality of life for patients and survivors
Title III of the Public Health Service Act (42 U.S.C. 243 et seq.) is amended by adding at the end the following:
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Information, support, and outcomes monitoring to improve quality care and quality of life for cancer patients and survivors
(a)
In general
The Secretary, acting through the Director of the Centers for Disease Control and Prevention (in this section referred to as the Director), shall improve the quality of cancer care and quality of life for cancer patients and survivors by expanding cancer control programs of the Centers for Disease Control and Prevention, including the National Comprehensive Cancer Control Program and the National Program of Cancer Registries. (b)
Coordination of federal cancer care and survivorship
(1)
In general
The Secretary shall direct the coordination of appropriate agencies described in paragraph (2) for the following purposes: (A)To develop information and support to States to— (i)incorporate evidence-based, best practice strategies into Comprehensive Cancer Control Program activities and services of such States; and (ii)improve systems of care and care delivery by including promotion of care supporting quality of life for cancer patients, survivors, and the family caregivers of such patients and survivors. (B)To develop service delivery efforts with special emphasis on addressing the particular needs of childhood and adolescent cancer patients and survivors, as well as patients and survivors in low-income, racial, or ethnic minority groups, and other medically underserved populations. (C)To improve the National Program of Cancer Registries and other existing surveillance systems for tracking cancer patients and survivors and assessing their health status and risk for other chronic and disabling conditions. (2)
Appropriate agencies
Appropriate agencies described in this paragraph include the Office of Cancer Survivorship at the National Cancer Institute, the National Institute of Nursing Research, and such other appropriate agencies as determined by the Secretary. (c)
Improving State and local programs To address cancer care and survivorship
In conducting or supporting State and local comprehensive cancer control programs through the Centers for Disease Control and Prevention, the Secretary shall provide funding and support to States, localities, and territories to expand and enhance such programs for the following purposes: (1)To include emphasis on quality cancer care and survivorship, and provide information and support for quality care initiatives for all cancer patient and survivor populations including women, children, adolescent, minority, and other medically underserved populations. (2)To develop and strengthen community outreach and education programs, resources, interventions, and campaigns; strengthen community information delivery systems to inform patients, survivors, and family members about quality of life support and services available to relieve pain, symptoms and stress; increase awareness of treatment and post-treatment health risks and challenges; and provide follow-up care important for survivors. Such programs may— (A)create and disseminate easily accessible, culturally appropriate communication materials and resources tailored to specific audiences; (B)inform patients, survivors, and family caregivers about particular symptoms, side effects, and late effects often associated with specific types of cancer or treatments and the importance of addressing them as essential elements of quality health care across the life course, including information on pain, nausea, fatigue, or other physical symptoms; worry, stress, or other psychological or emotional symptoms; lymphedema; cancer-related oral health issues and oral care; sexual dysfunction; fertility concerns and fertility preservation options; specific side effects or late effects that may affect overall health and well being; survivorship follow up care; and any other health-related conditions that are known to be experienced as a result of cancer by patients, survivors, and their family caregivers across the life course; (C)provide resource and referral information about other specific issues faced by cancer patients, survivors, and their families, including financial concerns, employment rights, medical leave, insurance coverage, anticipating and managing late effects of treatment and recurrent disease, advance care planning (including advance directives, living wills, and durable powers of attorney), and other care planning involved in health and medical decision-making; and (D)assist patients, survivors, and family caregivers with information about how to communicate effectively with health professionals about physical and psychological symptoms, and limitations or barriers to normal daily function that may be caused by treatment of cancer. (3)To include special emphasis on addressing the particular needs of children and adolescent cancer patients and survivors, as well as patients and survivors in low-income, racial, or ethnic minority groups, and other medically underserved populations. (d)
Cancer care and survivorship demonstration grants
(1)
In general
The Director shall award competitive grants to States, localities, and not-for-profit organizations for the purposes of developing, implementing, and evaluating cancer case management and coordination programs to enhance the quality of cancer care and quality of life for patients and survivors and to improve cancer outcomes. Specific emphasis shall be on addressing relief of symptoms, pain, side effects, and stress; increasing patient awareness of treatment and post-treatment health risks; and survivor care. (2)
Application
A State, locality, or not-for-profit organization seeking a grant under this subsection shall submit to the Director an application (at such time, in such manner, and containing such information as the Director may require), including assurances that the State, locality, or entity will— (A)serve medically underserved populations through specific outreach activities and coordinate culturally competent and appropriate care in accordance with existing, relevant departmental guidelines; and (B)evaluate and disseminate to the public annually detailed information about program activities. (3)
Use of funds
A State, locality, or not-for-profit entity shall use grant amounts awarded under this subsection to carry out programs that create partnerships with community organizations, including health care providers, cancer centers, hospitals, community health centers, palliative care programs, psychosocial care programs, hospice programs, home care, nonprofit organizations, health plans to facilitate access to integrated care services that support quality of life needs for patients, survivors, and family caregivers. Such activities shall include— (A)patient navigation and referrals, including assistance to patients and survivors in finding support groups; (B)interventions for patients, survivors, and caregivers; pain management; palliative care; psychosocial care; hospice; or other end of life care programs; (C)general advocacy on behalf of patients, survivors, and families; and (D)an evaluation to identify best practices to improve the coordination of cancer and survivorship care services and activities. (4)
Evaluation and reporting
The Director shall evaluate activities funded under this subsection and shall submit to Congress (and disseminate to the public) reports related to such evaluation, including findings, outcomes, and other program information. The first report shall be submitted not later than January 1, 2013, with updates provided every three years thereafter. (e)
Health care professional education and training demonstration grants
(1)
In general
The Director shall award competitive grants to not-for-profit entities or qualified individuals for the purpose of training individuals to undertake the quality of life needs of cancer patients, survivors, and family caregivers. (2)
Application
A not-for-profit entity or qualified individual seeking a grant under this subsection shall submit an application to the Director at such time, and in such manner, and containing such information as the Director may require, including assurances that the entity or individual will— (A)improve health professional communication skills in caring for patients and survivors to more effectively assess and address their quality of life or survivorship concerns; (B)assess and relieve pain, symptoms, side effects, and stress associated with cancer and its treatment; (C)promote care planning to align treatment with patient and family goals; (D)anticipate and communicate about cancer treatment and post-treatment health risks and follow-up care; (E)provide palliative, psychosocial, or other care to support quality of life integrated as part of disease-directed treatment to improve quality of cancer care; (F)promote use of survivorship care planning; (G)improve cultural sensitivity, communication, and patient care for minority and medically underserved populations, including addressing the particular needs of children, adolescents, and their families; racial and ethnic groups, and other medically underserved cancer patient and survivor populations; and (H)collect and analyze data related to the effectiveness of education and training efforts. (3)
Use of funds
An eligible entity shall use grant amounts awarded under this subsection to train and develop individuals with skills needed to assist the quality of life needs of cancer patients, survivors, and family caregivers by addressing symptoms, pain, side effects, stress, treatment, and post-treatment health risks and train individuals to assist in arranging follow-up care across the life course. (4)
Evaluation
The Secretary shall develop and implement a plan for evaluating the effects of professional training programs funded through this subsection. (5)
Definition
For purposes of this subsection, the term qualified individual means a physician, nurse, social worker, chaplain, psychologist, or other individual who is involved in providing palliative care and symptom management services to cancer patients. (f)
Quality of life advisory committee
(1)
Establishment
Not later than 90 days after the date of the enactment of this section, the Secretary shall establish a Quality of Life Advisory Committee (in this subsection referred to as the advisory committee) to advise, coordinate, and assist the Centers for Disease Control and Prevention in creating and conducting the cancer quality of life and survivorship activities, program enhancements, and training initiatives specified in subsections (a) through (e). (2)
Membership
The Secretary shall appoint to the advisory committee such members as the Secretary considers necessary, and shall include individuals and representatives of public and private organizations with expertise in cancer treatment and care; pain, symptom, and stress management; and cancer survivorship. (3)
Duties
The advisory committee shall meet at least once a year and shall— (A)consider and summarize recent advances achieved in cancer symptom management and survivorship research relevant to the goals of this section and identify gaps in basic, clinical, behavioral, or other research required to achieve further improvements in care to support quality of life and survivorship; and (B)annually submit to the Secretary a report on the findings described in subparagraph (A) with recommendations about additional research needed to improve care for cancer patients, survivors, and families that will support quality of life and survivorship. (g)
Authorization of appropriations
To carry out this section, there is authorized to be appropriated such sums as are necessary.
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3.
Enhancing research in support of quality of life, and cancer survivorship
Part B of title IV of the Public Health Service Act (42 U.S.C. 284 et seq.) is amended by adding at the end the following:
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Quality cancer care and cancer survivorship research
(a)
In general
The Director of the National Institutes of Health shall, in coordination with recommendations of the Quality of Life Advisory Committee established under section 317U(f), undertake additional cancer quality of life and survivorship research that addresses pain, symptom management, side effects and late effects, and psychosocial factors to improve cancer clinical communication and care planning, treatment and post-treatment, and follow-up care across the life course. (b)
Authorized research
Research supported under this section may include at least the following: (1)Examination of evidence-based practices relating to cancer care, survivorship, and follow-up care including comparing community-based public health interventions. (2)Analysis of the translation of cancer interventions from academic settings to real world settings. (3)Lifestyle, behavioral, and other research on the impact of cancer treatment and survivorship. (4)Formative research to assist with the development of educational messages and information, for dissemination to targeted populations such as children, adolescents, racial and ethnic minority groups, and other medically underserved groups, on the residual effects of cancer treatment. (5)Health disparities in cancer survivorship outcomes within minority or other medically underserved populations. (6)Intervention research to prevent or treat the post-treatment effects of cancer treatment. (7)Identification of the unique needs of patients who are diagnosed with rare or deadly cancers or cancers that have not been well studied. (8)Development of a consistent, standardized model of service delivery for cancer-related follow-up care across cancer centers and community oncology practices. (9)Development, testing, and communication of messages for patients, survivors, and health professionals that will improve understanding, demand for, and delivery of care to relieve pain, symptoms, stress, and other quality of life factors associated with serious illnesses such as cancer. (c)
Funding
Such funds as necessary to accomplish the requirements of subsection (a) shall be available from funds reserved under section 402A(c)(1) for the Common Fund or otherwise available for such initiatives.
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