[Congressional Record Volume 149, Number 31 (Wednesday, February 26, 2003)]
[Senate]
[Pages S2843-S2848]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mrs. HUTCHISON (for herself, Mr. Bingaman, Mr. Cochran, and 
        Mrs. Feinstein):
  S. 453. 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; to the Committee on 
Health, Education, Labor, and Pensions.
  Mrs. HUTCHISON. Mr. President, I am pleased to introduce legislation 
today that will reduce barriers to health care for millions of patients 
across the country, particularly those from medically underserved and 
minority communities. The Patient Navigator, Outreach, and Chronic 
Disease Prevention Act will create programs which direct individuals to 
affordable and accessible prevention, detection and treatment services 
for cancer and other chronic diseases. The bill will also establish 
patient navigator programs to assist patients make their way through 
the often complex health care system.
  This year alone, more than 80,000 Texans will be diagnosed with 
cancer and nearly 35,000 Texans will die of the disease. Cancer is the 
most expensive illness in the United States. It cost Texas $13.9 
billion in one year due to medical costs and loss of productivity in 
1998.
  Despite the tremendous progress that has been made in cancer and 
chronic disease prevention, detection, and treatment, not all Americans 
are benefitting. Cancer survival rates of those living in poverty are 
ten to fifteen percent lower than other Americans, and African American 
men have the lowest rate of cancer survival. Cancer and chronic disease 
continue to disproportionately impact minorities and medically 
underserved communities. The consequences of inadequate access to these 
services mean that diseases like cancer are often diagnosed at later 
stages when the illness is more advanced and options for treatment are 
decreased.
  In my home State of Texas, ensuring access to health care is a 
profound challenge, particularly along the Texas-Mexico border. The 
problem is in part due to lack of insurance coverage, as forty-nine 
percent of the Texas Hispanic population does not have health 
insurance, but it is also attributable to an uneven distribution of 
health professionals and hospitals, inadequate transportation, and a 
shortage of bilingual health information and providers.
  The legislation I am introducing today will eliminate barriers by 
cutting through red tape and increasing access to affordable prevention 
and care for people from all walks of life.
  The bill accomplishes its goals by reaching patients in the 
communities in which they live--through community health centers, rural 
health clinics, community hospitals, cancer centers, tribal and urban 
Indian organizations, among others, and by ensuring that there is a 
doctor or nurse, who, while speaking in a language people can 
understand, will provide patients with prevention screenings and 
follow-up treatment.
  Patients will be provided with a trained patient navigator from their 
own community, who can help with scheduling and keeping appointments 
and referrals for prevention and treatment. They can also ensure 
doctor's instructions are followed and funds to pay for treatment or 
arranging transportation to a specialist are obtained. They may also 
provide a service as simple as helping out with the paperwork.
  This legislation is modeled after successful programs such as the 
Harlem Navigator Program at Harlem Hospital in New York City operated 
by Dr. Harold Freeman, and the local Washington, D.C. Hospital Cancer 
Preventorium directed by Dr. Elmer Huerta. Through implementation of 
the Harlem patient navigator program, diagnosis of breast cancer at an 
early stage has improved. In 1989, only 1 out of 20 breast cancer 
diagnoses were made at an early stage. Now, through the navigator 
program, 4 out of every 10 diagnoses are identified early. Furthermore, 
the program has reduced the time between diagnosis and treatment to ten 
days.
  I look forward to working with my colleagues to pass the critically 
important Patient Navigator, Outreach and Chronic Disease Prevention 
Act.

[[Page S2844]]

  I ask unanimous consent that the text of the bill be printed in the 
Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                 S. 453

       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 date 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;

[[Page S2845]]

       ``(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 date 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

[[Page S2846]]

     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 date 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 date 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

[[Page S2847]]

     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 date 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; 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

[[Page S2848]]

       ``(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 date 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.''.
                                 ______