[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[H.R. 918 Introduced in House (IH)]







108th CONGRESS
  1st Session
                                H. R. 918

  To authorize the Health Resources and Services Administration, the 
National Cancer Institute, and the Indian Health Service 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 HOUSE OF REPRESENTATIVES

                           February 26, 2003

 Mr. Menendez (for himself, Ms. Pryce of Ohio, Mr. Green of Texas, Ms. 
 Ros-Lehtinen, Mr. Thompson of Mississippi, Mr. Lincoln Diaz-Balart of 
 Florida, Mr. Rodriguez, Mrs. Wilson of New Mexico, Mrs. Christensen, 
  Mr. Quinn, Mr. Serrano, Mr. McCotter, Mr. Pallone, Mr. Pearce, Mr. 
 Udall of New Mexico, and Mr. Mario Diaz-Balart of Florida) introduced 
 the following bill; which was referred to the Committee on Energy and 
Commerce and in addition to the Committee on Resources, for a period to 
      be subsequently determined by the Speaker, in each case for 
consideration of such provisions as fall within the jurisdiction of the 
                          committee concerned

_______________________________________________________________________

                                 A BILL


 
  To authorize the Health Resources and Services Administration, the 
National Cancer Institute, and the Indian Health Service 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.

    The Congress finds as follows:
            (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 percent 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. 330I. 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, tribal organizations, clinics serving Asian 
        Americans and Pacific Islanders and Alaskan Natives, and rural 
        health clinics and qualified nonprofit entities that partner 
        with one or more centers providing health care to provide 
        navigation services, which demonstrate the ability to perform 
all of the functions outlined 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 issues and other barriers to 
                        care and providing information about clinical 
                        trials;
                    ``(D) require training for patient navigators 
                employed through such model programs to ensure the 
                ability of navigators to perform all of the duties 
                required in this subsection and in subsection (b), 
                including training to ensure that 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.--In order to allow for 
        effective program evaluation, the grantee shall collect 
        specific patient data recording services provided to each 
        patient served by the program and shall establish and implement 
        procedures and protocols, consistent with applicable Federal 
        and State laws (including 45 C.F.R. 160 and 164) to ensure the 
        confidentiality of all information shared by a participant in 
        the program, or their personal representative and their health 
        care providers, group health plans, or health insurance 
        insurers with the program. The program may, consistent with 
        applicable Federal and State confidentiality laws, collect, use 
        or disclose aggregate information that is not individually 
        identifiable (as defined in 45 C.F.R. 160 and 164). With this 
        data, the grantee shall submit an annual report to the 
        Secretary that summarizes and analyzes these data, provides 
        information on needs for navigation services, types of access 
        difficulties resolved, sources of repeated resolution and 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, tribal organizations, clinics serving Asian 
        Americans and Pacific Islanders and Alaskan Natives, and rural 
        health clinics and qualified nonprofit entities that partner 
        with one or more centers providing health care to provide 
        navigation services, which demonstrate the ability to perform 
        all of the functions outlined in this subsection and 
        subsections (a) 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 issues and other barriers 
                to care and providing information about clinical 
                trials;
                    ``(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) 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 and/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 navigators to perform all of the 
                duties required in this subsection and in subsection 
                (a), including training to ensure that 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.--In order to allow for 
        effective patient navigator program evaluation, the grantee 
        shall collect specific patient data recording navigation 
        services provided to each patient served by the program and 
        shall establish and implement procedures and protocols, 
        consistent with applicable Federal and State laws (including 45 
        C.F.R. 160 and 164) to ensure the confidentiality of all 
        information shared by a participant in the program, or their 
        personal representative and their health care providers, group 
        health plans, or health insurance insurers with the program. 
        The patient navigator program may, consistent with applicable 
        Federal and State confidentiality laws, collect, use or 
        disclose aggregate information that is not individually 
        identifiable (as defined in 45 C.F.R. 160 and 164). With this 
        data, the grantee shall submit an annual report to the 
        Secretary that summarizes and analyzes these data, provides 
        information on needs for navigation services, types of access 
        difficulties resolved, sources of repeated resolution and 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 care is 
        provided free of charge, including the case of services 
        provided through programs of the Indian Health Service.
    ``(d) Model.--Not later than five 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 
                including providing 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.''.

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 
section:

``SEC. 417D. 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 issues and other barriers to 
                        care and providing information about clinical 
                        trials;
                    ``(D) require training for patient navigators 
                employed through such model programs to ensure the 
                ability of navigators to perform all of the duties 
                required in this subsection and in subsection (b), 
                including training to ensure that 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, Indian Health Service Clinics, tribal 
        governments, urban Indian organizations, tribal organizations, 
        a hospital, a qualified nonprofit entity that partners with one 
        or more centers providing health care to provide navigation 
        services, which demonstrates the ability to perform all of the 
        functions outlined in this subsection and subsections (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.
            ``(3) Data collection and report.--In order to allow for 
        effective program evaluation, the grantee shall collect 
        specific patient data recording services provided to each 
        patient served by the program and shall establish and implement 
        procedures and protocols, consistent with applicable Federal 
        and State laws (including 45 C.F.R. 160 and 164) to ensure the 
        confidentiality of all information shared by a participant in 
        the program, or their personal representative and their health 
        care providers, group health plans, or health insurance 
        insurers with the program. The program may, consistent with 
        applicable Federal and State confidentiality laws, collect, use 
        or disclose aggregate information that is not individually 
        identifiable (as defined in 45 CFR 160 and 164). With this 
        data, the grantee shall submit an annual report to the 
        Secretary that summarizes and analyzes these data, provides 
        information on needs for navigation services, types of access 
        difficulties resolved, sources of repeated resolution and 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 issues and other barriers 
                to care and providing information about clinical 
                trials;
                    ``(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) 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 and/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 navigators to perform all of the 
                duties required in this subsection and in subsection 
                (a), including training to ensure that 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.--In order to allow for 
        effective patient navigator program evaluation, the grantee 
        shall collect specific patient data recording navigation 
        services provided to each patient served by the program and 
        shall establish and implement procedures and protocols, 
        consistent with applicable Federal and State laws (including 45 
        C.F.R. 160 and 164) to ensure the confidentiality of all 
        information shared by a participant in the program, or their 
        personal representative and their health care providers, group 
        health plans, or health insurance insurers with the program. 
        The patient navigator program may, consistent with applicable 
        Federal and State confidentiality laws, collect, use or 
        disclose aggregate information that is not individually 
        identifiable (as defined in 45 C.F.R. 160 and 164). With this 
        data, the grantee shall submit an annual report to the 
        Secretary that summarizes and analyzes these data, provides 
        information on needs for navigation services, types of access 
        difficulties resolved, sources of repeated resolution and 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 care is 
        provided free of charge, including the case of services 
        provided through programs of the Indian Health Service.
    ``(d) Model.--Not later than five 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 providing 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.

    (a) Model Community Cancer and Chronic Disease Care and 
Prevention.--
            (1) In general.--The Director of the Indian Health Service 
        may make grants to Indian Health Service Centers, tribal 
        governments, urban Indian organizations, tribal organizations, 
        and qualified nonprofit entities demonstrating the ability to 
        perform all of the functions outlined in this subsection and 
        subsections (b) and (c) that partner with providers or centers 
        providing health care serving Native American populations to 
        provide navigation services, 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 issues and other barriers to 
                        care and providing information about clinical 
                        trials;
                    (D) require training for patient navigators 
                employed through such model programs to ensure the 
                ability of navigators to perform all of the duties 
                required in this subsection and in subsection (b), 
                including training to ensure that 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.--In order to allow for 
        effective program evaluation, the grantee shall collect 
        specific patient data recording services provided to each 
        patient served by the program and shall establish and implement 
        procedures and protocols, consistent with applicable Federal 
        and State laws (including 45 C.F.R. 160 and 164) to ensure the 
        confidentiality of all information shared by a participant in 
        the program, or their personal representative and their health 
        care providers, group health plans, or health insurance 
        insurers with the program. The program may, consistent with 
        applicable Federal and State confidentiality laws, collect, use 
        or disclose aggregate information that is not individually 
        identifiable (as defined in 45 C.F.R. 160 and 164). With this 
        data, the grantee shall submit an annual report to the 
        Secretary that summarizes and analyzes these data, provides 
        information on needs for navigation services, types of access 
        difficulties resolved, sources of repeated resolution and 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 
                Director of the Indian Health Service, 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 Director 
        of the Indian Health Service, may make grants to Indian Health 
        Service Centers, tribal governments, urban Indian 
        organizations, tribal organizations, and qualified nonprofit 
        entities demonstrating the ability to perform all of the 
        functions outlined in this subsection and subsections (a) and 
        (c) that partner with providers or centers providing health 
        care serving Native American populations to provide navigation 
        services, for the development and operation of model programs 
        to pay the costs of such organizations in--
                    (A) assigning patient navigators, in accordance 
                with applicable criteria of the Secretary, for 
                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 issues and other barriers to 
                care and providing information about clinical trials;
                    (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) 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 
                        and/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 navigators to perform all of the 
                duties required in this subsection and in subsection 
                (a), including training to ensure that 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.--In order to allow for 
        effective patient navigator program evaluation, the grantee 
        shall collect specific patient data recording navigation 
        services provided to each patient served by the program and 
        shall establish and implement procedures and protocols, 
        consistent with applicable Federal and State laws (including 45 
        C.F.R. 160 and 164) to ensure the confidentiality of all 
        information shared by a participant in the program, or their 
        personal representative and their health care providers, group 
        health plans, or health insurance insurers with the program. 
        The patient navigator program may, consistent with applicable 
        Federal and State confidentiality laws, collect, use or 
        disclose aggregate information that is not individually 
        identifiable (as defined in 45 C.F.R. 160 and 164). With this 
        data, the grantee shall submit an annual report to the 
        Secretary that summarizes and analyzes these data, provides 
        information on needs for navigation services, types of access 
        difficulties resolved, sources of repeated resolution and 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 
                Director of the Indian Health Service, 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, such as with 
        the Indian Health Service, where care is provided free of 
        charge.
    (d) Model.--Not later than five 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, 
                including providing 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 13 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>