[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[S. 453 Introduced in Senate (IS)]







108th CONGRESS
  1st Session
                                 S. 453

 To authorize the Health Resources and Services Administration and the 
National Cancer Institute to make grants for model programs to provide 
   to individuals of health disparity populations prevention, early 
   detection, treatment, and appropriate follow-up care services for 
   cancer and chronic diseases, and to make grants regarding patient 
  navigators to assist individuals of health disparity populations in 
                        receiving such services.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           February 26, 2003

   Mrs. Hutchison (for herself, Mr. Bingaman, Mr. Cochran, and Mrs. 
  Feinstein) introduced the following bill; which was read twice and 
  referred to the Committee on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
 To authorize the Health Resources and Services Administration and the 
National Cancer Institute to make grants for model programs to provide 
   to individuals of health disparity populations prevention, early 
   detection, treatment, and appropriate follow-up care services for 
   cancer and chronic diseases, and to make grants regarding patient 
  navigators to assist individuals of health disparity populations in 
                        receiving such services.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Patient Navigator, Outreach, and 
Chronic Disease Prevention Act of 2003''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Despite notable progress in the overall health of the 
        Nation, there are continuing disparities in the burden of 
        illness and death experienced by African Americans, Latinos and 
        Hispanics, Native Americans, Alaska Natives, Asian and Pacific 
        Islanders and the poor, compared to the United States 
        population as a whole.
            (2) Many racial and ethnic minority groups suffer 
        disproportionately from cancer. Mortality and morbidity rates 
        remain the most important measures of the overall progress 
        against cancer. Decreasing rates of death from cancer reflect 
        improvements in both prevention and treatment. Among all ethnic 
        groups in the United States, African American males have the 
        highest overall rate of mortality from cancer. Some specific 
        forms of cancer affect other ethnic minority communities at 
        rates up to several times higher than the national averages 
        (such as stomach and liver cancers among Asian American 
        populations, colon and rectal cancer among Alaska natives, and 
        cervical cancer among Hispanic and Vietnamese-American women).
            (3) Regions characterized by high rates of poverty also 
        have high mortality for some forms of cancer. For example, in 
        Appalachian Kentucky the incidence of lung cancer among white 
        males was 127 per 100,000 in 1992, a rate higher than that for 
        any ethnic minority group in the United States during the same 
        period.
            (4) Major disparities for other chronic diseases exist 
        among population groups, with a disproportionate burden of 
        death and disability from cardiovascular disease in racial and 
        ethnic minority and low-income populations. Compared with rates 
        for the general population, coronary heart disease mortality 
        was 40 percent lower for Asian Americans but 40 percent higher 
        for African-Americans.
            (5) Minority populations are disproportionately impacted by 
        diabetes and other chronic diseases. Hispanics are twice as 
        likely to have diabetes as non-Hispanic whites; diabetes is the 
        fourth leading cause of death among Hispanic women and elderly. 
        African Americans are 1.7 times as likely to have diabetes as 
        the general population. More than 15% of the combined 
        populations of Native Americans and Alaska Natives have 
        diabetes.
            (6) Culturally competent approaches to chronic disease care 
        are needed to encourage increased participation of racial and 
        ethnic minorities and the medically underserved in chronic 
        disease prevention, early detection and treatment programs.

SEC. 3. HRSA GRANTS FOR MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE 
              AND PREVENTION; HRSA GRANTS FOR PATIENT NAVIGATORS.

    Subpart I of part D of title III of the Public Health Service Act 
(42 U.S.C. 254b et seq.) is amended by adding at the end the following:

``SEC. 330L. MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND 
              PREVENTION; PATIENT NAVIGATORS.

    ``(a) Model Community Cancer and Chronic Disease Care and 
Prevention.--
            ``(1) In general.--The Secretary, acting through the 
        Administrator of the Health Resources and Services 
        Administration, may make grants to public and nonprofit private 
        health centers (including health centers under section 330, 
        Indian Health Service Centers, tribal governments, urban Indian 
        organizations, clinics serving Asian Americans and Pacific 
        Islanders and Alaskan Natives, rural health clinics, and 
        qualified nonprofit entities that enter into partnerships with 
        public and nonprofit private health centers to provide 
        navigation services, which demonstrate the ability to perform 
        all the functions described in this subsection and subsections 
        (b), and (c)) for the development and operation of model 
        programs that--
                    ``(A) provide to individuals of health disparity 
                populations prevention, early detection, treatment, and 
                appropriate follow-up care services for cancer and 
                chronic diseases;
                    ``(B) ensure that the health services are provided 
                to such individuals in a culturally competent manner;
                    ``(C) assign patient navigators, in accordance with 
                applicable criteria of the Secretary, for managing the 
                care of individuals of health disparity populations 
                to--
                            ``(i) accomplish, to the extent possible, 
                        the follow-up and diagnosis of an abnormal 
                        finding and the treatment and appropriate 
                        follow-up care of cancer or other chronic 
                        disease; and
                            ``(ii) facilitate access to appropriate 
                        health care services within the health care 
                        system to ensure optimal patient utilization of 
                        such services, including aid in coordinating 
                        and scheduling appointments and referrals, 
community outreach, assistance with transportation arrangements, and 
assistance with insurance issuers and other barriers to care;
                    ``(D) require training for patient navigators 
                employed through model programs under this paragraph to 
                ensure the ability of such navigators to perform all of 
                the duties required under this subsection and in 
                subsection (b), including training to ensure that such 
                navigators are informed about health insurance systems 
                and are able to aid patients in resolving access 
                issues; and
                    ``(E) ensure that consumers have direct access to 
                patient navigators during regularly scheduled hours of 
                business operation.
            ``(2) Outreach services.--A condition for the receipt of a 
        grant under paragraph (1) is that the applicant involved agree 
        to provide ongoing outreach activities while receiving the 
        grant, in a manner that is culturally competent for the health 
        disparity population served by the program, to inform the 
        public, and the specific community that the program is serving, 
        of the services of the model program under the grant. Such 
        activities shall include facilitating access to appropriate 
        health care services and patient navigators within the health 
        care system to ensure optimal patient utilization of these 
        services.
            ``(3) Data collection and report.--
                    ``(A) In general.--To provide for effective program 
                evaluation, a grant recipient under this subsection 
                shall collect specific patient data with respect to 
                services provided to each patient served through the 
                program and shall establish and implement procedures 
                and protocols, consistent with applicable Federal and 
                State laws (including sections 160 and 164 of title 45, 
                Code of Federal Regulations) to ensure the 
                confidentiality of all information shared by a patient 
                in the program (or their personal representative) and 
                their health care providers, group health plans, or 
                health insurance insurers.
                    ``(B) Use of data.--A grant recipient under this 
                subsection may, consistent with applicable Federal and 
                State confidentiality laws, collect, use, or disclose 
                aggregate information that is not individually 
                identifiable (as such term is defined for purposes of 
                sections 160 and 164 of title 45 Code of Federal 
                Regulations).
                    ``(C) Report.--Using data collected under this 
                paragraph, a grantee shall prepare and submit to the 
                Secretary an annual report that summarizes and analyzes 
                such data and provides information on the need for 
                navigation services, the types of access difficulties 
                resolved, the sources of repeated resolutions, and the 
                flaws in the system of access, including insurance 
                barriers.
            ``(4) Application for grant.--A grant may be made under 
        paragraph (1) only if an application for the grant is submitted 
        to the Secretary and the application is in such form, is made 
        in such manner, and contains such agreements, assurances, and 
        information as the Secretary determines to be necessary to 
        carry out this section.
            ``(5) Evaluations.--
                    ``(A) In general.--The Secretary, acting through 
                the Administrator of the Health Resources and Services 
                Administration, shall, directly or through grants or 
                contracts, provide for evaluations to determine which 
                outreach activities under paragraph (2) were most 
                effective in informing the public, and the specific 
                community that the program is serving, of the model 
                program services and to determine the extent to which 
                such programs were effective in providing culturally 
                competent services to the health disparity population 
                served by the programs.
                    ``(B) Dissemination of findings.--The Secretary 
                shall as appropriate disseminate to public and private 
                entities the findings made in evaluations under 
                subparagraph (A).
            ``(6) Coordination with other programs.--The Secretary 
        shall coordinate the program under this subsection with the 
        program under subsection (b), with the program under section 
        417D, and to the extent practicable, with programs for 
        prevention centers that are carried out by the Director of the 
        Centers for Disease Control and Prevention.
    ``(b) Program for Patient Navigators.--
            ``(1) In general.--The Secretary, acting through the 
        Administrator of the Health Resources and Services 
        Administration, may make grants to public and nonprofit private 
        health centers (including health centers under section 330, 
        Indian Health Service Centers, tribal governments, urban Indian 
        organizations, clinics serving Asian Americans and Pacific 
        Islanders and Alaskan Natives, rural health clinics, and 
        qualified nonprofit entities that enter into partnerships with 
        public and nonprofit private health centers to provide 
        navigation services, which demonstrate the ability to perform 
        all the functions described in subsections (a), (b), and (c)) 
        for the development and operation of programs to pay the costs 
        of such health centers in--
                    ``(A) assigning patient navigators, in accordance 
                with applicable criteria of the Secretary, for managing 
                the care of individuals of health disparity populations 
                for the duration of receiving health services from the 
                health centers, including aid in coordinating and 
                scheduling appointments and referrals, community 
                outreach, assistance with transportation arrangements, 
                and assistance with insurance issuers and other 
                barriers to care;
                    ``(B) ensuring that the services provided by the 
                patient navigators to such individuals include case 
                management and psychosocial assessment and care or 
                information and referral to such services;
                    ``(C) ensuring that the patient navigators with 
                direct knowledge of the communities they serve provide 
                services to such individuals in a culturally competent 
                manner;
                    ``(D) developing model practices for patient 
                navigators, including with respect to--
                            ``(i) coordination of health services, 
                        including psychosocial assessment and care;
                            ``(ii) appropriate follow-up care, 
                        including psychosocial assessment and care;
                            ``(iii) determining coverage under health 
                        insurance and health plans for all services;
                            ``(iv) ensuring the initiation, 
                        continuation, or sustained access to care 
                        prescribed by the patients' health care 
                        providers; and
                            ``(v) aiding patients with health insurance 
                        coverage issues;
                    ``(E) requiring training for patient navigators to 
                ensure the ability of such navigators to perform all of 
                the duties required under this subsection and in 
                subsection (a), including training to ensure that such 
                navigators are informed about health insurance systems 
                and are able to aid patients in resolving access 
                issues; and
                    ``(F) ensuring that consumers have direct access to 
                patient navigators during regularly scheduled hours of 
                business operation.
            ``(2) Outreach services.--A condition for the receipt of a 
        grant under paragraph (1) is that the applicant involved agree 
        to provide ongoing outreach activities while receiving the 
        grant, in a manner that is culturally competent for the health 
        disparity population served by the program, to inform the 
        public, and the specific community that the patient navigator 
        is serving, of the services of the model program under the 
        grant.
            ``(3) Data collection and report.--
                    ``(A) In general.--To provide for effective patient 
                navigator program evaluation, a grant recipient under 
                this subsection shall collect specific patient data 
                with respect to navigation services provided to each 
                patient served through the program and shall establish 
                and implement procedures and protocols, consistent with 
                applicable Federal and State laws (including sections 
                160 and 164 of title 45, Code of Federal Regulations) 
                to ensure the confidentiality of all information shared 
                by a patient in the program (or their personal 
                representative) and their health care providers, group 
                health plans, or health insurance insurers.
                    ``(B) Use of data.--A grant recipient under this 
                subsection may, consistent with applicable Federal and 
                State confidentiality laws, collect, use, or disclose 
                aggregate information that is not individually 
                identifiable (as such term is defined for purposes of 
                sections 160 and 164 of title 45 Code of Federal 
                Regulations).
                    ``(C) Report.--Using data collected under this 
                paragraph, a grantee shall prepare and submit to the 
                Secretary an annual report that summarizes and analyzes 
                such data and provides information on the need for 
                navigation services, the types of access difficulties 
                resolved, the sources of repeated resolutions, and the 
                flaws in the system of access, including insurance 
                barriers.
            ``(4) Application for grant.--A grant may be made under 
        paragraph (1) only if an application for the grant is submitted 
        to the Secretary and the application is in such form, is made 
        in such manner, and contains such agreements, assurances, and 
        information as the Secretary determines to be necessary to 
        carry out this section.
            ``(5) Evaluations.--
                    ``(A) In general.--The Secretary, acting through 
                the Administrator of the Health Resources and Services 
                Administration, shall, directly or through grants or 
                contracts, provide for evaluations to determine the 
                effects of the services of patient navigators on the 
                individuals of health disparity populations for whom 
                the services were provided, taking into account the 
                matters referred to in paragraph (1)(C).
                    ``(B) Dissemination of findings.--The Secretary 
                shall as appropriate disseminate to public and private 
entities the findings made in evaluations under subparagraph (A).
            ``(6) Coordination with other programs.--The Secretary 
        shall coordinate the program under this subsection with the 
        program under subsection (a) and with the program under section 
        417D.
    ``(c) Requirements Regarding Fees.--
            ``(1) In general.--A condition for the receipt of a grant 
        under subsection (a)(1) or (b)(1) is that the program for which 
        the grant is made have in effect--
                    ``(A) a schedule of fees or payments for the 
                provision of its health care services related to the 
                prevention and treatment of disease that is consistent 
                with locally prevailing rates or charges and is 
                designed to cover its reasonable costs of operation; 
                and
                    ``(B) a corresponding schedule of discounts to be 
                applied to the payment of such fees or payments, which 
                discounts are adjusted on the basis of the ability of 
                the patient to pay.
            ``(2) Rule of construction.--Nothing in this section shall 
        be construed to require payment for navigation services or to 
        require payment for health care services in cases where the 
        care is provided free of charge, including the case of services 
        provided through programs of the Indian Health Service.
    ``(d) Model.--Not later than three years after the date of the 
enactment of this section, the Secretary shall develop a peer-reviewed 
model of systems for the services provided by this section. The 
Secretary shall update such model as may be necessary to ensure that 
the best practices are being utilized.
    ``(e) Duration of Grant.--The period during which payments are made 
to an entity from a grant under subsection (a)(1) or (b)(1) may not 
exceed five years. The provision of such payments are subject to annual 
approval by the Secretary of the payments and subject to the 
availability of appropriations for the fiscal year involved to make the 
payments. This subsection may not be construed as establishing a 
limitation on the number of grants under such subsection that may be 
made to an entity.
    ``(f) Definitions.--For purposes of this section:
            ``(1) The term `culturally competent', with respect to 
        providing health-related services, means services that, in 
        accordance with standards and measures of the Secretary, are 
        designed to effectively and efficiently respond to the cultural 
        and linguistic needs of patients.
            ``(2) The term `appropriate follow-up care' includes 
        palliative and end-of-life care.
            ``(3) The term `health disparity population' means a 
        population where there exists a significant disparity in the 
        overall rate of disease incidence, morbidity, mortality, or 
        survival rates in the population as compared to the health 
        status of the general population. Such term includes--
                    ``(A) racial and ethnic minority groups as defined 
                in section 1707; and
                    ``(B) medically underserved groups, such as rural 
                and low-income individuals and individuals with low 
                levels of literacy.
            ``(4)(A) The term `patient navigator' means an individual 
        whose functions include--
                    ``(i) assisting and guiding patients with a symptom 
                or an abnormal finding or diagnosis of cancer or other 
                chronic disease within the health care system to 
                accomplish the follow-up and diagnosis of an abnormal 
                finding as well as the treatment and appropriate 
                follow-up care of cancer or other chronic disease; and
                    ``(ii) identifying, anticipating, and helping 
                patients overcome barriers within the health care 
                system to ensure prompt diagnostic and treatment 
                resolution of an abnormal finding of cancer or other 
                chronic disease.
            ``(B) Such term includes representatives of the target 
        health disparity population, such as nurses, social workers, 
        cancer survivors, and patient advocates.
    ``(g) Authorization of Appropriations.--
            ``(1) In general.--
                    ``(A) Model programs.--For the purpose of carrying 
                out subsection (a) (other than the purpose described in 
                paragraph (2)(A)), there are authorized to be 
                appropriated such sums as may be necessary for each of 
                the fiscal years 2004 through 2008.
                    ``(B) Patient navigators.--For the purpose of 
                carrying out subsection (b) (other than the purpose 
                described in paragraph (2)(B)), there are authorized to 
                be appropriated such sums as may be necessary for each 
                of the fiscal years 2004 through 2008.
                    ``(C) Bureau of primary health care.--Amounts 
                appropriated under subparagraph (A) or (B) shall be 
                administered through the Bureau of Primary Health Care.
            ``(2) Programs in rural areas.--
                    ``(A) Model programs.--For the purpose of carrying 
                out subsection (a) by making grants under such 
                subsection for model programs in rural areas, there are 
                authorized to be appropriated such sums as may be 
                necessary for each of the fiscal years 2004 through 
                2008.
                    ``(B) Patient navigators.--For the purpose of 
                carrying out subsection (b) by making grants under such 
                subsection for programs in rural areas, there are 
                authorized to be appropriated such sums as may be 
                necessary for each of the fiscal years 2004 through 
                2008.
                    ``(C) Office of rural health policy.--Amounts 
                appropriated under subparagraph (A) or (B) shall be 
                administered through the Office of Rural Health Policy.
            ``(3) Relation to other authorizations.--Authorizations of 
        appropriations under paragraphs (1) and (2) are in addition to 
        other authorizations of appropriations that are available for 
        the purposes described in such paragraphs.''.

SEC. 4. NCI GRANTS FOR MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE 
              AND PREVENTION; NCI GRANTS FOR PATIENT NAVIGATORS.

    Subpart 1 of part C of title IV of the Public Health Service Act 
(42 U.S.C. 285 et seq.) is amended by adding at the end following:

``SEC. 417E. MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND 
              PREVENTION; PATIENT NAVIGATORS.

    ``(a) Model Community Cancer and Chronic Disease Care and 
Prevention.--
            ``(1) In general.--The Director of the Institute may make 
        grants to eligible entities for the development and operation 
        of model programs that--
                    ``(A) provide to individuals of health disparity 
                populations prevention, early detection, treatment, and 
                appropriate follow-up care services for cancer and 
                chronic diseases;
                    ``(B) ensure that the health services are provided 
                to such individuals in a culturally competent manner;
                    ``(C) assign patient navigators, in accordance with 
                applicable criteria of the Secretary, for managing the 
                care of individuals of health disparity populations 
                to--
                            ``(i) accomplish, to the extent possible, 
                        the follow-up and diagnosis of an abnormal 
                        finding and the treatment and appropriate 
                        follow-up care of cancer or other chronic 
                        disease; and
                            ``(ii) facilitate access to appropriate 
                        health care services within the health 
care system to ensure optimal patient utilization of such services, 
including aid in coordinating and scheduling appointments and 
referrals, community outreach, assistance with transportation 
arrangements, and assistance with insurance issuers and other barriers 
to care;
                    ``(D) require training for patient navigators 
                employed through model programs under this paragraph to 
                ensure the ability of such navigators to perform all of 
                the duties required under this subsection and in 
                subsection (b), including training to ensure that such 
                navigators are informed about health insurance systems 
                and are able to aid patients in resolving access 
                issues; and
                    ``(E) ensure that consumers have direct access to 
                patient navigators during regularly scheduled hours of 
                business operation.
            ``(2) Eligible entities.--For purposes of this section, an 
        eligible entity is a designated cancer center of the Institute, 
        an academic institution, an Indian Health Services Clinic, a 
        tribal government, an urban Indian organization, a hospital, a 
        qualified nonprofit entity that enters into a partnership with 
        public and nonprofit private health centers to provide 
        navigation services and which demonstrates the ability to 
        perform all the functions described in subsections (a), (b), 
        and (c), or any other public or private entity determined to be 
        appropriate by the Director of the Institute that provides 
        services described in paragraph (1)(A) for cancer and chronic 
        diseases, a nonprofit organization, or any other public or 
        private entity determined to be appropriate by the Director of 
        the Institute, that provides services described in paragraph 
        (1)(A) for cancer or chronic diseases.
            ``(3) Data collection and report.--
                    ``(A) In general.--To provide for effective program 
                evaluation, a grant recipient under this subsection 
                shall collect specific patient data with respect to 
                services provided to each patient served through the 
                program and shall establish and implement procedures 
                and protocols, consistent with applicable Federal and 
                State laws (including sections 160 and 164 of title 45, 
                Code of Federal Regulations) to ensure the 
                confidentiality of all information shared by a patient 
                in the program (or their personal representative) and 
                their health care providers, group health plans, or 
                health insurance insurers.
                    ``(B) Use of data.--A grant recipient under this 
                subsection may, consistent with applicable Federal and 
                State confidentiality laws, collect, use, or disclose 
                aggregate information that is not individually 
                identifiable (as such term is defined for purposes of 
                sections 160 and 164 of title 45 Code of Federal 
                Regulations).
                    ``(C) Report.--Using data collected under this 
                paragraph, a grantee shall prepare and submit to the 
                Secretary an annual report that summarizes and analyzes 
                such data and provides information on the need for 
                navigation services, the types of access difficulties 
                resolved, the sources of repeated resolutions, and the 
                flaws in the system of access, including insurance 
                barriers.
            ``(4) Outreach services.--A condition for the receipt of a 
        grant under paragraph (1) is that the applicant involved agree 
        to provide ongoing outreach activities while receiving the 
        grant, in a manner that is culturally competent for the health 
        disparity population served by the program, to inform the 
        public, and the specific community that the program is serving, 
        of the services of the model program under the grant. Such 
        activities shall include facilitating access to appropriate 
        health care services and patient navigators within the health 
        care system to ensure optimal patient utilization of these 
        services.
            ``(5) Application for grant.--A grant may be made under 
        paragraph (1) only if an application for the grant is submitted 
        to the Director of the Institute and the application is in such 
        form, is made in such manner, and contains such agreements, 
        assurances, and information as the Director determines to be 
        necessary to carry out this section.
            ``(6) Evaluations.--
                    ``(A) In general.--The Director of the Institute, 
                directly or through grants or contracts, shall provide 
                for evaluations to determine which outreach activities 
                under paragraph (3) were most effective in informing 
                the public, and the specific community that the program 
                is serving, of the model program services and to 
                determine the extent to which such programs were 
                effective in providing culturally competent services to 
the health disparity population served by the programs.
                    ``(B) Dissemination of findings.--The Director of 
                the Institute shall as appropriate disseminate to 
                public and private entities the findings made in 
                evaluations under subparagraph (A).
            ``(7) Coordination with other programs.--The Secretary 
        shall coordinate the program under this subsection with the 
        program under subsection (b), with the program under section 
        330I, and to the extent practicable, with programs for 
        prevention centers that are carried out by the Director of the 
        Centers for Disease Control and Prevention.
    ``(b) Program for Patient Navigators.--
            ``(1) In general.--The Director of the Institute may make 
        grants to eligible entities for the development and operation 
        of programs to pay the costs of such entities in--
                    ``(A) assigning patient navigators, in accordance 
                with applicable criteria of the Secretary, for managing 
                the care of individuals of health disparity populations 
                for the duration of receiving health services from the 
                health centers, including aid in coordinating and 
                scheduling appointments and referrals, community 
                outreach, assistance with transportation arrangements, 
                and assistance with insurance issuers and other 
                barriers to care;
                    ``(B) ensuring that the services provided by the 
                patient navigators to such individuals include case 
                management and psychosocial assessment and care or 
                information and referral to such services;
                    ``(C) ensuring that patient navigators with direct 
                knowledge of the communities they serve provide 
                services to such individuals in a culturally competent 
                manner;
                    ``(D) developing model practices for patient 
                navigators, including with respect to--
                            ``(i) coordination of health services, 
                        including psychosocial assessment and care;
                            ``(ii) follow-up services, including 
                        psychosocial assessment and care; and
                            ``(iii) determining coverage under health 
                        insurance and health plans for all services;
                            ``(iv) ensuring the initiation, 
                        continuation, or sustained access to care 
                        prescribed by the patients' health care 
                        providers; and
                            ``(v) aiding patients with health insurance 
                        coverage issues;
                    ``(E) requiring training for patient navigators to 
                ensure the ability of such navigators to perform all of 
                the duties required under this subsection and in 
                subsection (a), including training to ensure that such 
                navigators are informed about health insurance systems 
                and are able to aid patients in resolving access 
                issues; and
                    ``(F) ensuring that consumers have direct access to 
                patient navigators during regularly scheduled hours of 
                business operation.
            ``(2) Outreach services.--A condition for the receipt of a 
        grant under paragraph (1) is that the applicant involved agree 
        to provide ongoing outreach activities while receiving the 
        grant, in a manner that is culturally competent for the health 
        disparity population served by the program, to inform the 
        public, and the specific community that the patient navigator 
        is serving, of the services of the model program under the 
        grant.
            ``(3) Data collection and report.--
                    ``(A) In general.--To provide for effective patient 
                navigator program evaluation, a grant recipient under 
                this subsection shall collect specific patient data 
                with respect to navigation services provided to each 
                patient served through the program and shall establish 
                and implement procedures and protocols, consistent with 
                applicable Federal and State laws (including sections 
                160 and 164 of title 45, Code of Federal Regulations) 
                to ensure the confidentiality of all information shared 
                by a patient in the program (or their personal 
                representative) and their health care providers, group 
                health plans, or health insurance insurers.
                    ``(B) Use of data.--A grant recipient under this 
                subsection may, consistent with applicable Federal and 
                State confidentiality laws, collect, use, or disclose 
                aggregate information that is not individually 
                identifiable (as such term is defined for purposes of 
                sections 160 and 164 of title 45 Code of Federal 
                Regulations).
                    ``(C) Report.--Using data collected under this 
                paragraph, a grantee shall prepare and submit to the 
                Secretary an annual report that summarizes and analyzes 
                such data and provides information on the need for 
                navigation services, the types of access difficulties 
                resolved, the sources of repeated resolutions, and the 
                flaws in the system of access, including insurance 
                barriers.
            ``(4) Application for grant.--A grant may be made under 
        paragraph (1) only if an application for the grant is submitted 
        to the Director of the Institute and the application is in such 
        form, is made in such manner, and contains such agreements, 
        assurances, and information as the Director determines to be 
        necessary to carry out this section.
            ``(5) Evaluations.--
                    ``(A) In general.--The Director of the Institute, 
                directly or through grants or contracts, shall provide 
                for evaluations to determine the effects of the 
                services of patient navigators on the health disparity 
                population for whom the services were provided, taking 
                into account the matters referred to in paragraph 
                (1)(C).
                    ``(B) Dissemination of findings.--The Director of 
                the Institute shall as appropriate disseminate to 
                public and private entities the findings made in 
evaluations under subparagraph (A).
            ``(6) Coordination with other programs.--The Secretary 
        shall coordinate the program under this subsection with the 
        program under subsection (a) and with the program under section 
        330I.
    ``(c) Requirements Regarding Fees.--
            ``(1) In general.--A condition for the receipt of a grant 
        under subsection (a)(1) or (b)(1) is that the program for which 
        the grant is made have in effect--
                    ``(A) a schedule of fees or payments for the 
                provision of its health care services related to the 
                prevention and treatment of disease that is consistent 
                with locally prevailing rates or charges and is 
                designed to cover its reasonable costs of operation; 
                and
                    ``(B) a corresponding schedule of discounts to be 
                applied to the payment of such fees or payments, which 
                discounts are adjusted on the basis of the ability of 
                the patient to pay.
            ``(2) Rule of construction.--Nothing in this section shall 
        be construed to require payment for navigation services or to 
        require payment for health care services in cases where the 
        care is provided free of charge, including the case of services 
        provided through programs of the Indian Health Service.
    ``(d) Model.--Not later than three years after the date of the 
enactment of this section, the Director of the Institute shall develop 
a peer-reviewed model of systems for the services provided by this 
section. The Director shall update such model as may be necessary to 
ensure that the best practices are being utilized.
    ``(e) Duration of Grant.--The period during which payments are made 
to an entity from a grant under subsection (a)(1) or (b)(1) may not 
exceed five years. The provision of such payments are subject to annual 
approval by the Director of the Institute of the payments and subject 
to the availability of appropriations for the fiscal year involved to 
make the payments. This subsection may not be construed as establishing 
a limitation on the number of grants under such subsection that may be 
made to an entity.
    ``(f) Definitions.--For purposes of this section:
            ``(1) The term `culturally competent', with respect to 
        providing health-related services, means services that, in 
        accordance with standards and measures of the Secretary, are 
        designed to effectively and efficiently respond to the cultural 
        and linguistic needs of patients.
            ``(2) The term `appropriate follow-up care' includes 
        palliative and end-of-life care.
            ``(3) The term `health disparity population' means a 
        population where there exists a significant disparity in the 
        overall rate of disease incidence, morbidity, mortality, or 
        survival rates in the population as compared to the health 
        status of the general population. Such term includes--
                    ``(A) racial and ethnic minority groups as defined 
                in section 1707; and
                    ``(B) medically underserved groups, such as rural 
                and low-income individuals and individuals with low 
                levels of literacy.
            ``(4)(A) The term `patient navigator' means an individual 
        whose functions include--
                    ``(i) assisting and guiding patients with a symptom 
                or an abnormal finding or diagnosis of cancer or other 
                chronic disease within the health care system to 
                accomplish the follow-up and diagnosis of an abnormal 
                finding as well as the treatment and appropriate 
                follow-up care of cancer or other chronic disease, 
                including information about clinical trials; and
                    ``(ii) identifying, anticipating, and helping 
                patients overcome barriers within the health care 
                system to ensure prompt diagnostic and treatment 
                resolution of an abnormal finding of cancer or other 
                chronic disease.
            ``(B) Such term includes representatives of the target 
        health disparity population, such as nurses, social workers, 
        cancer survivors, and patient advocates.
    ``(g) Authorization of Appropriations.--
            ``(1) Model programs.--For the purpose of carrying out 
        subsection (a), there are authorized to be appropriated such 
        sums as may be necessary for each of the fiscal years 2004 
        through 2008.
            ``(2) Patient navigators.--For the purpose of carrying out 
        subsection (b), there are authorized to be appropriated such 
        sums as may be necessary for each of the fiscal years 2004 
        through 2008.
            ``(3) Relation to other authorizations.--Authorizations of 
        appropriations under paragraphs (1) and (2) are in addition to 
        other authorizations of appropriations that are available for 
        the purposes described in such paragraphs.''.

SEC. 5. IHS GRANTS FOR MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE 
              AND PREVENTION; IHS GRANTS FOR PATIENT NAVIGATORS.

    Title II of the Indian Health Care Improvement Act (25 U.S.C. 162 
et seq.) is amended by adding at the end the following:

``SEC. 226. MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND 
              PREVENTION; PATIENT NAVIGATORS.

    ``(a) Model Community Cancer and Chronic Disease Care and 
Prevention.--
            ``(1) In general.--The Director of the Service may make 
        grants to Indian Health Service Centers, tribal governments, 
        urban Indian organizations, tribal organizations, and qualified 
        nonprofit entities that enter into partnerships with public and 
        nonprofit private health centers serving Native American 
        populations to provide navigation services and that demonstrate 
        the ability to perform all the functions described in this 
        subsection and subsections (b) and (c), for the development and 
        operation of model programs that--
                    ``(A) provide to individuals of health disparity 
                populations prevention, early detection, treatment, and 
                appropriate follow-up care services for cancer and 
                chronic diseases;
                    ``(B) ensure that the health services are provided 
                to such individuals in a culturally competent manner;
                    ``(C) assign patient navigators, in accordance with 
                applicable criteria of the Secretary, for managing the 
                care of individuals of health disparity populations 
                to--
                            ``(i) accomplish, to the extent possible, 
                        the follow-up and diagnosis of an abnormal 
                        finding and the treatment and appropriate 
                        follow-up care of cancer or other chronic 
                        disease; and
                            ``(ii) facilitate access to appropriate 
                        health care services within the health care 
                        system to ensure optimal patient utilization of 
                        such services, including aid in coordinating 
                        and scheduling appointments and referrals, 
                        community outreach, assistance with 
                        transportation arrangements, and assistance 
                        with insurance issuers and other barriers to 
                        care;
                    ``(D) require training for patient navigators 
                employed through model programs under this paragraph to 
                ensure the ability of such navigators to perform all of 
                the duties required under this subsection and in 
                subsection (b), including training to ensure that such 
                navigators are informed about health insurance systems 
                and are able to aid patients in resolving access 
                issues; and
                    ``(E) ensure that consumers have direct access to 
                patient navigators during regularly scheduled hours of 
                business operation.
            ``(2) Outreach services.--A condition for the receipt of a 
        grant under paragraph (1) is that the applicant involved agree 
        to provide ongoing outreach activities while receiving the 
        grant, in a manner that is culturally competent for the health 
        disparity population served by the program, to inform the 
        public, and the specific community that the program is serving, 
        of the services of the model program under the grant. Such 
        activities shall include facilitating access to appropriate 
        health care services and patient navigators within the health 
        care system to ensure optimal patient utilization of these 
        services.
            ``(3) Data collection and report.--
                    ``(A) In general.--To provide for effective program 
                evaluation, a grant recipient under this subsection 
                shall collect specific patient data with respect to 
                services provided to each patient served through the 
                program and shall establish and implement procedures 
                and protocols, consistent with applicable Federal and 
                State laws (including sections 160 and 164 of title 45, 
                Code of Federal Regulations) to ensure the 
                confidentiality of all information shared by a patient 
                in the program (or their personal representative) and 
                their health care providers, group health plans, or 
                health insurance insurers.
                    ``(B) Use of data.--A grant recipient under this 
                subsection may, consistent with applicable Federal and 
                State confidentiality laws, collect, use, or disclose 
                aggregate information that is not individually 
                identifiable (as such term is defined for purposes of 
                sections 160 and 164 of title 45 Code of Federal 
                Regulations).
                    ``(C) Report.--Using data collected under this 
                paragraph, a grantee shall prepare and submit to the 
                Secretary an annual report that summarizes and analyzes 
                such data and provides information on the need for 
                navigation services, the types of access difficulties 
                resolved, the sources of repeated resolutions, and the 
                flaws in the system of access, including insurance 
                barriers.
            ``(4) Application for grant.--A grant may be made under 
        paragraph (1) only if an application for the grant is submitted 
        to the Director of the Service and the application is in such 
        form, is made in such manner, and contains such agreements, 
        assurances, and information as the Director determines to be 
        necessary to carry out this section.
            ``(5) Evaluations.--
                    ``(A) In general.--The Director of the Service, 
                directly or through grants or contracts, shall provide 
                for evaluations to determine which outreach activities 
                under paragraph (2) were most effective in informing 
                the public, and the specific community that the program 
                is serving, of the model program services and to 
                determine the extent to which such programs were 
                effective in providing culturally competent services to 
                the health disparity population served by the programs.
                    ``(B) Dissemination of findings.--The Director of 
                the Service shall as appropriate disseminate to public 
                and private entities the findings made in evaluations 
                under subparagraph (A).
            ``(6) Coordination with other programs.--The Director of 
        the Service shall coordinate the program under this subsection 
        with the program under subsection (b), with the program under 
        section 417D of the Public Health Service Act, and to the 
        extent practicable, with programs for prevention centers that 
        are carried out by the Director of the Centers for Disease 
        Control and Prevention.
    ``(b) Program for Patient Navigators.--
            ``(1) In general.--The Director of the Service may make 
        grants to Indian Health Service Centers, tribal governments, 
        urban Indian organizations, tribal organizations, and qualified 
        nonprofit entities that enter into partnerships with public and 
        nonprofit private health centers serving Native American 
        populations to provide navigation services, and that 
        demonstrate the ability to perform all the functions described 
        in this subsection and subsections (b) and (c), for the 
        development and operation of model programs to pay the costs of 
        such entities in--
                    ``(A) assigning patient navigators, in accordance 
                with applicable criteria of the Secretary, for managing 
                the care of individuals of health disparity populations 
                for the duration of receiving health services from the 
                health centers, including aid in coordinating and 
                scheduling appointments and referrals, community 
                outreach, assistance with transportation arrangements, 
                and assistance with insurance issuers and other 
                barriers to care;
                    ``(B) ensuring that the services provided by the 
                patient navigators to such individuals include case 
                management and psychosocial assessment and care or 
                information and referral to such services;
                    ``(C) ensuring that patient navigators with direct 
                knowledge of the communities they serve provide 
                services to such individuals in a culturally competent 
                manner;
                    ``(D) developing model practices for patient 
                navigators, including with respect to--
                            ``(i) coordination of health services, 
                        including psychosocial assessment and care;
                            ``(ii) follow-up services, including 
                        psychosocial assessment and care;
                            ``(iii) determining coverage under health 
                        insurance and health plans for all services;
                            ``(iv) ensuring the initiation, 
                        continuation, or sustained access to care 
                        prescribed by the patients' health care 
                        providers; and
                            ``(v) aiding patients with health insurance 
                        coverage issues;
                    ``(E) requiring training for patient navigators to 
                ensure the ability of such navigators to perform all of 
                the duties required under this subsection and in 
                subsection (a), including training to ensure that such 
                navigators are informed about health insurance systems 
                and are able to aid patients in resolving access 
                issues; and
                    ``(F) ensuring that consumers have direct access to 
                patient navigators during regularly scheduled hours of 
                business operation.
            ``(2) Outreach services.--A condition for the receipt of a 
        grant under paragraph (1) is that the applicant involved agree 
        to provide ongoing outreach activities while receiving the 
        grant, in a manner that is culturally competent for the health 
        disparity population served by the program, to inform the 
        public, and the specific community that the patient navigator 
        is serving, of the services of the model program under the 
        grant.
            ``(3) Data collection and report.--
                    ``(A) In general.--To provide for effective patient 
                navigator program evaluation, a grant recipient under 
                this subsection shall collect specific patient data 
                with respect to navigation services provided to each 
                patient served through the program and shall establish 
                and implement procedures and protocols, consistent with 
                applicable Federal and State laws (including sections 
                160 and 164 of title 45, Code of Federal Regulations) 
                to ensure the confidentiality of all information shared 
                by a patient in the program (or their personal 
                representative) and their health care providers, group 
                health plans, or health insurance insurers.
                    ``(B) Use of data.--A grant recipient under this 
                subsection may, consistent with applicable Federal and 
                State confidentiality laws, collect, use, or disclose 
                aggregate information that is not individually 
                identifiable (as such term is defined for purposes of 
                sections 160 and 164 of title 45 Code of Federal 
                Regulations).
                    ``(C) Report.--Using data collected under this 
                paragraph, a grantee shall prepare and submit to the 
                Director of the Service an annual report that 
                summarizes and analyzes such data and provides 
                information on the need for navigation services, the 
                types of access difficulties resolved, the sources of 
                repeated resolutions, and the flaws in the system of 
                access, including insurance barriers.
            ``(4) Application for grant.--A grant may be made under 
        paragraph (1) only if an application for the grant is submitted 
        to the Director of the Service and the application is in such 
        form, is made in such manner, and contains such agreements, 
        assurances, and information as the Director determines to be 
        necessary to carry out this section.
            ``(5) Evaluations.--
                    ``(A) In general.--The Director of the Service, 
                directly or through grants or contracts, shall provide 
                for evaluations to determine the effects of the 
                services of patient navigators on the health disparity 
                population for whom the services were provided, taking 
                into account the matters referred to in paragraph 
                (1)(C).
                    ``(B) Dissemination of findings.--The Director of 
                the Service shall as appropriate disseminate to public 
                and private entities the findings made in evaluations 
                under subparagraph (A).
            ``(6) Coordination with other programs.--The Director of 
        the Service shall coordinate the program under this subsection 
        with the program under subsection (a) and with the program 
        under section 417D of the Public Health Service Act.
    ``(c) Requirements Regarding Fees.--
            ``(1) In general.--A condition for the receipt of a grant 
        under subsection (a)(1) or (b)(1) is that the program for which 
        the grant is made have in effect--
                    ``(A) a schedule of fees or payments for the 
                provision of its health care services related to the 
                prevention and treatment of disease that is consistent 
                with locally prevailing rates or charges and is 
                designed to cover its reasonable costs of operation; 
                and
                    ``(B) a corresponding schedule of discounts to be 
                applied to the payment of such fees or payments, which 
                discounts are adjusted on the basis of the ability of 
                the patient to pay.
            ``(2) Rule of construction.--Nothing in this section shall 
        be construed to require payment for navigation services or to 
        require payment for health care services in cases where the 
        care is provided free of charge, including the case of services 
        provided through programs of the Indian Health Service.
    ``(d) Model.--Not later than three years after the date of the 
enactment of this section, the Director of the Service shall develop a 
peer-reviewed model of systems for the services provided by this 
section. The Director shall update such model as may be necessary to 
ensure that the best practices are being utilized.
    ``(e) Duration of Grant.--The period during which payments are made 
to an entity from a grant under subsection (a)(1) or (b)(1) may not 
exceed five years. The provision of such payments are subject to annual 
approval by the Director of the Service of the payments and subject to 
the availability of appropriations for the fiscal year involved to make 
the payments. This subsection may not be construed as establishing a 
limitation on the number of grants under such subsection that may be 
made to an entity.
    ``(f) Definitions.--For purposes of this section:
            ``(1) The term `culturally competent', with respect to 
        providing health-related services, means services that, in 
        accordance with standards and measures of the Secretary, are 
        designed to effectively and efficiently respond to the cultural 
        and linguistic needs of patients.
            ``(2) The term `appropriate follow-up care' includes 
        palliative and end-of-life care.
            ``(3) The term `health disparity population' means a 
        population where there exists a significant disparity in the 
        overall rate of disease incidence, morbidity, mortality, or 
        survival rates in the population as compared to the health 
        status of the general population. Such term includes--
                    ``(A) racial and ethnic minority groups as defined 
                in section 1707 of the Public Health Service Act; and
                    ``(B) medically underserved groups, such as rural 
                and low-income individuals and individuals with low 
                levels of literacy.
            ``(4)(A) The term `patient navigator' means an individual 
        whose functions include--
                    ``(i) assisting and guiding patients with a symptom 
                or an abnormal finding or diagnosis of cancer or other 
                chronic disease within the health care system to 
                accomplish the follow-up and diagnosis of an abnormal 
                finding as well as the treatment and appropriate 
                follow-up care of cancer or other chronic disease, 
                including information about clinical trials; and
                    ``(ii) identifying, anticipating, and helping 
                patients overcome barriers within the health care 
                system to ensure prompt diagnostic and treatment 
                resolution of an abnormal finding of cancer or other 
                chronic disease.
            ``(B) Such term includes representatives of the target 
        health disparity population, such as nurses, social workers, 
        cancer survivors, and patient advocates.
    ``(g) Authorization of Appropriations.--
            ``(1) In general.--
                    ``(A) Model programs.--For the purpose of carrying 
                out subsection (a) (other than the purpose described in 
                paragraph (2)(A)), there are authorized to be 
                appropriated such sums as may be necessary for each of 
                the fiscal years 2004 through 2008.
                    ``(B) Patient navigators.--For the purpose of 
                carrying out subsection (b) (other than the purpose 
                described in paragraph (2)(B)), there are authorized to 
                be appropriated such sums as may be necessary for each 
                of the fiscal years 2004 through 2008.
                    ``(C) Bureau of primary health care.--Amounts 
                appropriated under subparagraph (A) or (B) shall be 
                administered through the Bureau of Primary Health Care.
            ``(2) Programs in rural areas.--
                    ``(A) Model programs.--For the purpose of carrying 
                out subsection (a) by making grants under such 
                subsection for model programs in rural areas, there are 
                authorized to be appropriated such sums as may be 
                necessary for each of the fiscal years 2004 through 
                2008.
                    ``(B) Patient navigators.--For the purpose of 
                carrying out subsection (b) by making grants under such 
                subsection for programs in rural areas, there are 
                authorized to be appropriated such sums as may be 
                necessary for each of the fiscal years 2004 through 
                2008.
                    ``(C) Office of rural health policy.--Amounts 
                appropriated under subparagraph (A) or (B) shall be 
                administered through the Office of Rural Health Policy.
            ``(3) Relation to other authorizations.--Authorizations of 
        appropriations under paragraphs (1) and (2) are in addition to 
        other authorizations of appropriations that are available for 
        the purposes described in such paragraphs.''.
                                 <all>