108th CONGRESS
1st Session
S. 453
To authorize the Health Resources and Services Administration and
the National Cancer Institute to make grants for model programs to provide
to individuals of health disparity populations prevention, early detection,
treatment, and appropriate follow-up care services for cancer and chronic
diseases, and to make grants regarding patient navigators to assist individuals
of health disparity populations in receiving such services.
IN THE SENATE OF THE UNITED STATES
February 26, 2003
Mrs. HUTCHISON (for herself, Mr. BINGAMAN, Mr. Cochran, and Mrs. Feinstein)
introduced the following bill; which was read twice and referred to the Committee
on Health, Education, Labor, and Pensions
A BILL
To authorize the Health Resources and Services Administration and
the National Cancer Institute to make grants for model programs to provide
to individuals of health disparity populations prevention, early detection,
treatment, and appropriate follow-up care services for cancer and chronic
diseases, and to make grants regarding patient navigators to assist individuals
of health disparity populations in receiving such services.
Be it enacted by the Senate and House of Representatives of the United
States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the `Patient Navigator, Outreach, and Chronic Disease
Prevention Act of 2003'.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Despite notable progress in the overall health of the Nation, there
are continuing disparities in the burden of illness and death experienced
by African Americans, Latinos and Hispanics, Native Americans, Alaska Natives,
Asian and Pacific Islanders and the poor, compared to the United States
population as a whole.
(2) Many racial and ethnic minority groups suffer disproportionately from
cancer. Mortality and morbidity rates remain the most important measures
of the overall progress against cancer. Decreasing rates of death from cancer
reflect improvements in both prevention and treatment. Among all ethnic
groups in the United States, African American males have the highest overall
rate of mortality from cancer. Some specific forms of cancer affect other
ethnic minority communities at rates up to several times higher than the
national averages (such as stomach and liver cancers among Asian American
populations, colon and rectal cancer among Alaska natives, and cervical
cancer among Hispanic and Vietnamese-American women).
(3) Regions characterized by high rates of poverty also have high mortality
for some forms of cancer. For example, in Appalachian Kentucky the incidence
of lung cancer among white males was 127 per 100,000 in 1992, a rate higher
than that for any ethnic minority group in the United States during the
same period.
(4) Major disparities for other chronic diseases exist among population
groups, with a disproportionate burden of death and disability from cardiovascular
disease in racial and ethnic minority and low-income populations. Compared
with rates for the general population, coronary heart disease mortality
was 40 percent lower for Asian Americans but 40 percent higher for African-Americans.
(5) Minority populations are disproportionately impacted by diabetes and
other chronic diseases. Hispanics are twice as likely to have diabetes as
non-Hispanic whites; diabetes is the fourth leading cause of death among
Hispanic women and elderly. African Americans are 1.7 times as likely to
have diabetes as the general population. More than 15% of the combined populations
of Native Americans and Alaska Natives have diabetes.
(6) Culturally competent approaches to chronic disease care are needed to
encourage increased participation of racial and ethnic minorities and the
medically underserved in chronic disease prevention, early detection and
treatment programs.
SEC. 3. HRSA GRANTS FOR MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE
AND PREVENTION; HRSA GRANTS FOR PATIENT NAVIGATORS.
Subpart I of part D of title III of the Public Health Service Act (42 U.S.C.
254b et seq.) is amended by adding at the end the following:
`SEC. 330L. MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION;
PATIENT NAVIGATORS.
`(a) MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION-
`(1) IN GENERAL- The Secretary, acting through the Administrator of the
Health Resources and Services Administration, may make grants to public
and nonprofit private health centers (including health centers under section
330, Indian Health Service Centers, tribal governments, urban Indian organizations,
clinics serving Asian Americans and Pacific Islanders and Alaskan Natives,
rural health clinics, and qualified nonprofit entities that enter into partnerships
with public and nonprofit private health centers to provide navigation services,
which demonstrate the ability to perform all the functions described in
this subsection and subsections (b), and (c)) for the development and operation
of model programs that--
`(A) provide to individuals of health disparity populations prevention,
early detection, treatment, and appropriate follow-up care services for
cancer and chronic diseases;
`(B) ensure that the health services are provided to such individuals
in a culturally competent manner;
`(C) assign patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations to--
`(i) accomplish, to the extent possible, the follow-up and diagnosis
of an abnormal finding and the treatment and appropriate follow-up care
of cancer or other chronic disease; and
`(ii) facilitate access to appropriate health care services within the
health care system to ensure optimal patient utilization of such services,
including aid in coordinating and scheduling appointments
and referrals, community outreach, assistance with transportation arrangements,
and assistance with insurance issuers and other barriers to care;
`(D) require training for patient navigators employed through model programs
under this paragraph to ensure the ability of such navigators to perform
all of the duties required under this subsection and in subsection (b),
including training to ensure that such navigators are informed about health
insurance systems and are able to aid patients in resolving access issues;
and
`(E) ensure that consumers have direct access to patient navigators during
regularly scheduled hours of business operation.
`(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public,
and the specific community that the program is serving, of the services
of the model program under the grant. Such activities shall include facilitating
access to appropriate health care services and patient navigators within
the health care system to ensure optimal patient utilization of these services.
`(3) DATA COLLECTION AND REPORT-
`(A) IN GENERAL- To provide for effective program evaluation, a grant
recipient under this subsection shall collect specific patient data with
respect to services provided to each patient served through the program
and shall establish and implement procedures and protocols, consistent
with applicable Federal and State laws (including sections 160 and 164
of title 45, Code of Federal Regulations) to ensure the confidentiality
of all information shared by a patient in the program (or their personal
representative) and their health care providers, group health plans, or
health insurance insurers.
`(B) USE OF DATA- A grant recipient under this subsection may, consistent
with applicable Federal and State confidentiality laws, collect, use,
or disclose aggregate information that is not individually identifiable
(as such term is defined for purposes of sections 160 and 164 of title
45 Code of Federal Regulations).
`(C) REPORT- Using data collected under this paragraph, a grantee shall
prepare and submit to the Secretary an annual report that summarizes and
analyzes such data and provides information on the need for navigation
services, the types of access difficulties resolved, the sources of repeated
resolutions, and the flaws in the system of access, including insurance
barriers.
`(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Secretary and the application
is in such form, is made in such manner, and contains such agreements, assurances,
and information as the Secretary determines to be necessary to carry out
this section.
`(A) IN GENERAL- The Secretary, acting through the Administrator of the
Health Resources and Services Administration, shall, directly or through
grants or contracts, provide for evaluations to determine which outreach
activities under paragraph (2) were most effective in informing the public,
and the specific community that the program is serving, of the model program
services and to determine the extent to which such programs were effective
in providing culturally competent services to the health disparity population
served by the programs.
`(B) DISSEMINATION OF FINDINGS- The Secretary shall as appropriate disseminate
to public and private entities the findings made in evaluations under
subparagraph (A).
`(6) COORDINATION WITH OTHER PROGRAMS- The Secretary shall coordinate the
program under this subsection with the program under subsection (b), with
the program under section 417D, and to the extent practicable, with programs
for prevention centers that are carried out by the Director of the Centers
for Disease Control and Prevention.
`(b) PROGRAM FOR PATIENT NAVIGATORS-
`(1) IN GENERAL- The Secretary, acting through the Administrator of the
Health Resources and Services Administration, may make grants to public
and nonprofit private health centers (including health centers under section
330, Indian Health Service Centers, tribal governments, urban Indian organizations,
clinics serving Asian Americans and Pacific Islanders and Alaskan Natives,
rural health clinics, and qualified nonprofit entities that enter into partnerships
with public and nonprofit private health centers to provide navigation services,
which demonstrate the ability to perform all the functions described in
subsections (a), (b), and (c)) for the development and operation of programs
to pay the costs of such health centers in--
`(A) assigning patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations for the duration of receiving health services from the health
centers, including aid in coordinating and scheduling appointments and
referrals, community outreach, assistance with transportation arrangements,
and assistance with insurance issuers and other barriers to care;
`(B) ensuring that the services provided by the patient navigators to
such individuals include case management and psychosocial assessment and
care or information and referral to such services;
`(C) ensuring that the patient navigators with direct knowledge of the
communities they serve provide services to such individuals in a culturally
competent manner;
`(D) developing model practices for patient navigators, including with
respect to--
`(i) coordination of health services, including psychosocial assessment
and care;
`(ii) appropriate follow-up care, including psychosocial assessment
and care;
`(iii) determining coverage under health insurance and health plans
for all services;
`(iv) ensuring the initiation, continuation, or sustained access to
care prescribed by the patients' health care providers; and
`(v) aiding patients with health insurance coverage issues;
`(E) requiring training for patient navigators to ensure the ability of
such navigators to perform all of the duties required under this subsection
and in subsection (a), including training to ensure that such navigators
are informed about health insurance systems and are able to aid patients
in resolving access issues; and
`(F) ensuring that consumers have direct access to patient navigators
during regularly scheduled hours of business operation.
`(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public,
and the specific community that the patient navigator is serving, of the
services of the model program under the grant.
`(3) DATA COLLECTION AND REPORT-
`(A) IN GENERAL- To provide for effective patient navigator program evaluation,
a grant recipient under this subsection shall collect specific patient
data with respect to navigation services provided to each patient served
through the program and shall establish and implement procedures and protocols,
consistent with applicable Federal and State laws (including sections
160 and 164 of title 45, Code of Federal Regulations) to ensure the confidentiality
of all information shared by a patient in the program (or their personal
representative) and their health care providers, group health plans, or
health insurance insurers.
`(B) USE OF DATA- A grant recipient under this subsection may, consistent
with applicable Federal and State confidentiality laws, collect, use,
or disclose aggregate information that is not individually identifiable
(as such term is defined for purposes of sections 160 and 164 of title
45 Code of Federal Regulations).
`(C) REPORT- Using data collected under this paragraph, a grantee shall
prepare and submit to the Secretary an annual report that summarizes and
analyzes such data and provides information on the need for navigation
services, the types of access difficulties resolved, the sources of repeated
resolutions, and the flaws in the system of access, including insurance
barriers.
`(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Secretary and the application
is in such form, is made in such manner, and contains such agreements, assurances,
and information as the Secretary determines to be necessary to carry out
this section.
`(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-
`(A) MODEL PROGRAMS- For the purpose of carrying out subsection (a) (other
than the purpose described in paragraph (2)(A)), there are authorized
to be appropriated such sums as may be necessary for each of the fiscal
years 2004 through 2008.
`(B) PATIENT NAVIGATORS- For the purpose of carrying out subsection (b)
(other than the purpose described in paragraph (2)(B)), there are authorized
to be appropriated such sums as may be necessary for each of the fiscal
years 2004 through 2008.
`(C) BUREAU OF PRIMARY HEALTH CARE- Amounts appropriated under subparagraph
(A) or (B) shall be administered through the Bureau of Primary Health
Care.
`(2) PROGRAMS IN RURAL AREAS-
`(A) MODEL PROGRAMS- For the purpose of carrying out subsection (a) by
making grants under such subsection for model programs in rural areas,
there are authorized to be appropriated such sums as may be necessary
for each of the fiscal years 2004 through 2008.
`(B) PATIENT NAVIGATORS- For the purpose of carrying out subsection (b)
by making grants under such subsection for programs in rural areas, there
are authorized to be appropriated such sums as may be necessary for each
of the fiscal years 2004 through 2008.
`(C) OFFICE OF RURAL HEALTH POLICY- Amounts appropriated under subparagraph
(A) or (B) shall be administered through the Office of Rural Health Policy.
`(3) RELATION TO OTHER AUTHORIZATIONS- Authorizations of appropriations
under paragraphs (1) and (2) are in addition to other authorizations of
appropriations that are available for the purposes described in such paragraphs.'.
SEC. 4. NCI GRANTS FOR MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND
PREVENTION; NCI GRANTS FOR PATIENT NAVIGATORS.
Subpart 1 of part C of title IV of the Public Health Service Act (42 U.S.C.
285 et seq.) is amended by adding at the end following:
`SEC. 417E. MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION;
PATIENT NAVIGATORS.
`(a) MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION-
`(1) IN GENERAL- The Director of the Institute may make grants to eligible
entities for the development and operation of model programs that--
`(A) provide to individuals of health disparity populations prevention,
early detection, treatment, and appropriate follow-up care services for
cancer and chronic diseases;
`(B) ensure that the health services are provided to such individuals
in a culturally competent manner;
`(C) assign patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations to--
`(i) accomplish, to the extent possible, the follow-up and diagnosis
of an abnormal finding and the treatment and appropriate follow-up care
of cancer or other chronic disease; and
`(ii) facilitate access to appropriate health care services within the
health care
system to ensure optimal patient utilization of such services, including
aid in coordinating and scheduling appointments and referrals, community outreach,
assistance with transportation arrangements, and assistance with insurance
issuers and other barriers to care;
`(D) require training for patient navigators employed through model programs
under this paragraph to ensure the ability of such navigators to perform
all of the duties required under this subsection and in subsection (b),
including training to ensure that such navigators are informed about health
insurance systems and are able to aid patients in resolving access issues;
and
`(E) ensure that consumers have direct access to patient navigators during
regularly scheduled hours of business operation.
`(2) ELIGIBLE ENTITIES- For purposes of this section, an eligible entity
is a designated cancer center of the Institute, an academic institution,
an Indian Health Services Clinic, a tribal government, an urban Indian organization,
a hospital, a qualified nonprofit entity that enters into a partnership
with public and nonprofit private health centers to provide navigation services
and which demonstrates the ability to perform all the functions described
in subsections (a), (b), and (c), or any other public or private entity
determined to be appropriate by the Director of the Institute that provides
services described in paragraph (1)(A) for cancer and chronic diseases,
a nonprofit organization, or any other public or private entity determined
to be appropriate by the Director of the Institute, that provides services
described in paragraph (1)(A) for cancer or chronic diseases.
`(3) DATA COLLECTION AND REPORT-
`(A) IN GENERAL- To provide for effective program evaluation, a grant
recipient under this subsection shall collect specific patient data with
respect to services provided to each patient served through the program
and shall establish and implement procedures and protocols, consistent
with applicable Federal and State laws (including sections 160 and 164
of title 45, Code of Federal Regulations) to ensure the confidentiality
of all information shared by a patient in the program (or their personal
representative) and their health care providers, group health plans, or
health insurance insurers.
`(B) USE OF DATA- A grant recipient under this subsection may, consistent
with applicable Federal and State confidentiality laws, collect, use,
or disclose aggregate information that is not individually identifiable
(as such term is defined for purposes of sections 160 and 164 of title
45 Code of Federal Regulations).
`(C) REPORT- Using data collected under this paragraph, a grantee shall
prepare and submit to the Secretary an annual report that summarizes and
analyzes such data and provides information on the need for navigation
services, the types of access difficulties resolved, the sources of repeated
resolutions, and the flaws in the system of access, including insurance
barriers.
`(4) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public,
and the specific community that the program is serving, of the services
of the model program under the grant. Such activities shall include facilitating
access to appropriate health care services and patient navigators within
the health care system to ensure optimal patient utilization of these services.
`(5) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Director of the Institute
and the application is in such form, is made in such manner, and contains
such agreements, assurances, and information as the Director determines
to be necessary to carry out this section.
`(A) IN GENERAL- The Director of the Institute, directly or through grants
or contracts, shall provide for evaluations to determine which outreach
activities under paragraph (3) were most effective in informing the public,
and the specific community that the program is serving, of the model program
services and to determine the extent to which such programs were effective
in providing culturally competent
services to the health disparity population served by the programs.
`(B) DISSEMINATION OF FINDINGS- The Director of the Institute shall as
appropriate disseminate to public and private entities the findings made
in evaluations under subparagraph (A).
`(7) COORDINATION WITH OTHER PROGRAMS- The Secretary shall coordinate the
program under this subsection with the program under subsection (b), with
the program under section 330I, and to the extent practicable, with programs
for prevention centers that are carried out by the Director of the Centers
for Disease Control and Prevention.
`(b) PROGRAM FOR PATIENT NAVIGATORS-
`(1) IN GENERAL- The Director of the Institute may make grants to eligible
entities for the development and operation of programs to pay the costs
of such entities in--
`(A) assigning patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations for the duration of receiving health services from the health
centers, including aid in coordinating and scheduling appointments and
referrals, community outreach, assistance with transportation arrangements,
and assistance with insurance issuers and other barriers to care;
`(B) ensuring that the services provided by the patient navigators to
such individuals include case management and psychosocial assessment and
care or information and referral to such services;
`(C) ensuring that patient navigators with direct knowledge of the communities
they serve provide services to such individuals in a culturally competent
manner;
`(D) developing model practices for patient navigators, including with
respect to--
`(i) coordination of health services, including psychosocial assessment
and care;
`(ii) follow-up services, including psychosocial assessment and care;
and
`(iii) determining coverage under health insurance and health plans
for all services;
`(iv) ensuring the initiation, continuation, or sustained access to
care prescribed by the patients' health care providers; and
`(v) aiding patients with health insurance coverage issues;
`(E) requiring training for patient navigators to ensure the ability of
such navigators to perform all of the duties required under this subsection
and in subsection (a), including training to ensure that such navigators
are informed about health insurance systems and are able to aid patients
in resolving access issues; and
`(F) ensuring that consumers have direct access to patient navigators
during regularly scheduled hours of business operation.
`(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public,
and the specific community that the patient navigator is serving, of the
services of the model program under the grant.
`(3) DATA COLLECTION AND REPORT-
`(A) IN GENERAL- To provide for effective patient navigator program evaluation,
a grant recipient under this subsection shall collect specific patient
data with respect to navigation services provided to each patient served
through the program and shall establish and implement procedures and protocols,
consistent with applicable Federal and State laws (including sections
160 and 164 of title 45, Code of Federal Regulations) to ensure the confidentiality
of all information shared by a patient in the program (or their personal
representative) and their health care providers, group health plans, or
health insurance insurers.
`(B) USE OF DATA- A grant recipient under this subsection may, consistent
with applicable Federal and State confidentiality laws, collect, use,
or disclose aggregate information that is not individually identifiable
(as such term is defined for purposes of sections 160 and 164 of title
45 Code of Federal Regulations).
`(C) REPORT- Using data collected under this paragraph, a grantee shall
prepare and submit to the Secretary an annual report that summarizes and
analyzes such data and provides information on the need for navigation
services, the types of access difficulties resolved, the sources of repeated
resolutions, and the flaws in the system of access, including insurance
barriers.
`(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Director of the Institute
and the application is in such form, is made in such manner, and contains
such agreements, assurances, and information as the Director determines
to be necessary to carry out this section.
`(A) IN GENERAL- The Director of the Institute, directly or through grants
or contracts, shall provide for evaluations to determine the effects of
the services of patient navigators on the health disparity population
for whom the services were provided, taking into account the matters referred
to in paragraph (1)(C).
`(B) DISSEMINATION OF FINDINGS- The Director of the Institute shall as
appropriate disseminate to public and private entities the
findings made in evaluations under subparagraph (A).
`(6) COORDINATION WITH OTHER PROGRAMS- The Secretary shall coordinate the
program under this subsection with the program under subsection (a) and
with the program under section 330I.
`(c) REQUIREMENTS REGARDING FEES-
`(1) IN GENERAL- A condition for the receipt of a grant under subsection
(a)(1) or (b)(1) is that the program for which the grant is made have in
effect--
`(A) a schedule of fees or payments for the provision of its health care
services related to the prevention and treatment of disease that is consistent
with locally prevailing rates or charges and is designed to cover its
reasonable costs of operation; and
`(B) a corresponding schedule of discounts to be applied to the payment
of such fees or payments, which discounts are adjusted on the basis of
the ability of the patient to pay.
`(2) RULE OF CONSTRUCTION- Nothing in this section shall be construed to
require payment for navigation services or to require payment for health
care services in cases where the care is provided free of charge, including
the case of services provided through programs of the Indian Health Service.
`(d) MODEL- Not later than three years after the date of the enactment of
this section, the Director of the Institute shall develop a peer-reviewed
model of systems for the services provided by this section. The Director shall
update such model as may be necessary to ensure that the best practices are
being utilized.
`(e) DURATION OF GRANT- The period during which payments are made to an entity
from a grant under subsection (a)(1) or (b)(1) may not exceed five years.
The provision of such payments are subject to annual approval by the Director
of the Institute of the payments and subject to the availability of appropriations
for the fiscal year involved to make the payments. This subsection may not
be construed as establishing a limitation on the number of grants under such
subsection that may be made to an entity.
`(f) DEFINITIONS- For purposes of this section:
`(1) The term `culturally competent', with respect to providing health-related
services, means services that, in accordance with standards and measures
of the Secretary, are designed to effectively and efficiently respond to
the cultural and linguistic needs of patients.
`(2) The term `appropriate follow-up care' includes palliative and end-of-life
care.
`(3) The term `health disparity population' means a population where there
exists a significant disparity in the overall rate of disease incidence,
morbidity, mortality, or survival rates in the population as compared to
the health status of the general population. Such term includes--
`(A) racial and ethnic minority groups as defined in section 1707; and
`(B) medically underserved groups, such as rural and low-income individuals
and individuals with low levels of literacy.
`(4)(A) The term `patient navigator' means an individual whose functions
include--
`(i) assisting and guiding patients with a symptom or an abnormal finding
or diagnosis of cancer or other chronic disease within the health care
system to accomplish the follow-up and diagnosis of an abnormal finding
as well as the treatment and appropriate follow-up care of cancer or other
chronic disease, including information about clinical trials; and
`(ii) identifying, anticipating, and helping patients overcome barriers
within the health care system to ensure prompt diagnostic and treatment
resolution of an abnormal finding of cancer or other chronic disease.
`(B) Such term includes representatives of the target health disparity population,
such as nurses, social workers, cancer survivors, and patient advocates.
`(g) AUTHORIZATION OF APPROPRIATIONS-
`(1) MODEL PROGRAMS- For the purpose of carrying out subsection (a), there
are authorized to be appropriated such sums as may be necessary for each
of the fiscal years 2004 through 2008.
`(2) PATIENT NAVIGATORS- For the purpose of carrying out subsection (b),
there are authorized to be appropriated such sums as may be necessary for
each of the fiscal years 2004 through 2008.
`(3) RELATION TO OTHER AUTHORIZATIONS- Authorizations of appropriations
under paragraphs (1) and (2) are in addition to other authorizations of
appropriations that are available for the purposes described in such paragraphs.'.
SEC. 5. IHS GRANTS FOR MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND
PREVENTION; IHS GRANTS FOR PATIENT NAVIGATORS.
Title II of the Indian Health Care Improvement Act (25 U.S.C. 162 et seq.)
is amended by adding at the end the following:
`SEC. 226. MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION;
PATIENT NAVIGATORS.
`(a) MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION-
`(1) IN GENERAL- The Director of the Service may make grants to Indian Health
Service Centers, tribal governments, urban Indian organizations, tribal
organizations, and qualified nonprofit entities that enter into partnerships
with public and nonprofit private health centers serving Native American
populations to provide navigation services and that demonstrate the ability
to perform all the functions described in this subsection and subsections
(b) and (c), for the development and operation of model programs that--
`(A) provide to individuals of health disparity populations prevention,
early detection, treatment, and appropriate follow-up care services for
cancer and chronic diseases;
`(B) ensure that the health services are provided to such individuals
in a culturally competent manner;
`(C) assign patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations to--
`(i) accomplish, to the extent possible, the follow-up and diagnosis
of an abnormal finding and the treatment and appropriate follow-up care
of cancer or other chronic disease; and
`(ii) facilitate access to appropriate health care services within the
health care system to ensure optimal patient utilization of such services,
including aid in coordinating and scheduling appointments and referrals,
community outreach, assistance with transportation arrangements, and
assistance with insurance issuers and other barriers to care;
`(D) require training for patient navigators employed through model programs
under this paragraph to ensure the ability of such navigators to perform
all of the duties required under this subsection and in subsection (b),
including training to ensure that such navigators are informed about health
insurance systems and are able to aid patients in resolving access issues;
and
`(E) ensure that consumers have direct access to patient navigators during
regularly scheduled hours of business operation.
`(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public,
and the specific community that the program is serving, of the services
of the model program under the grant. Such activities shall include facilitating
access to appropriate health care services and patient navigators within
the health care system to ensure optimal patient utilization of these services.
`(3) DATA COLLECTION AND REPORT-
`(A) IN GENERAL- To provide for effective program evaluation, a grant
recipient under this subsection shall collect specific patient data with
respect to services provided to each patient served through the program
and shall establish and implement procedures and protocols, consistent
with applicable Federal and State laws (including sections 160 and 164
of title 45, Code of Federal Regulations) to ensure the confidentiality
of all information shared by a patient in the program (or their personal
representative) and their health care providers, group health plans, or
health insurance insurers.
`(B) USE OF DATA- A grant recipient under this subsection may, consistent
with applicable Federal and State confidentiality laws, collect, use,
or disclose aggregate information that is not individually identifiable
(as such term is defined for purposes of sections 160 and 164 of title
45 Code of Federal Regulations).
`(C) REPORT- Using data collected under this paragraph, a grantee shall
prepare and submit to the Secretary an annual report that summarizes and
analyzes such data and provides information on the need for navigation
services, the types of access difficulties resolved, the sources of repeated
resolutions, and the flaws in the system of access, including insurance
barriers.
`(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Director of the Service
and the application is in such form, is made in such manner, and contains
such agreements, assurances, and information as the Director determines
to be necessary to carry out this section.
`(A) IN GENERAL- The Director of the Service, directly or through grants
or contracts, shall provide for evaluations to determine which outreach
activities under paragraph (2) were most effective in informing the public,
and the specific community that the program is serving, of the model program
services and to determine the extent to which such programs were effective
in providing culturally competent services to the
health disparity population served by the programs.
`(B) DISSEMINATION OF FINDINGS- The Director of the Service shall as appropriate
disseminate to public and private entities the findings made in evaluations
under subparagraph (A).
`(6) COORDINATION WITH OTHER PROGRAMS- The Director of the Service shall
coordinate the program under this subsection with the program under subsection
(b), with the program under section 417D of the Public Health Service Act,
and to the extent practicable, with programs for prevention centers that
are carried out by the Director of the Centers for Disease Control and Prevention.
`(b) PROGRAM FOR PATIENT NAVIGATORS-
`(1) IN GENERAL- The Director of the Service may make grants to Indian Health
Service Centers, tribal governments, urban Indian organizations, tribal
organizations, and qualified nonprofit entities that enter into partnerships
with public and nonprofit private health centers serving Native American
populations to provide navigation services, and that demonstrate the ability
to perform all the functions described in this subsection and subsections
(b) and (c), for the development and operation of model programs to pay
the costs of such entities in--
`(A) assigning patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations for the duration of receiving health services from the health
centers, including aid in coordinating and scheduling appointments and
referrals, community outreach, assistance with transportation arrangements,
and assistance with insurance issuers and other barriers to care;
`(B) ensuring that the services provided by the patient navigators to
such individuals include case management and psychosocial assessment and
care or information and referral to such services;
`(C) ensuring that patient navigators with direct knowledge of the communities
they serve provide services to such individuals in a culturally competent
manner;
`(D) developing model practices for patient navigators, including with
respect to--
`(i) coordination of health services, including psychosocial assessment
and care;
`(ii) follow-up services, including psychosocial assessment and care;
`(iii) determining coverage under health insurance and health plans
for all services;
`(iv) ensuring the initiation, continuation, or sustained access to
care prescribed by the patients' health care providers; and
`(v) aiding patients with health insurance coverage issues;
`(E) requiring training for patient navigators to ensure the ability of
such navigators to perform all of the duties required under this subsection
and in subsection (a), including training to ensure that such navigators
are informed about health insurance systems and are able to aid patients
in resolving access issues; and
`(F) ensuring that consumers have direct access to patient navigators
during regularly scheduled hours of business operation.
`(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public,
and the specific community that the patient navigator is serving, of the
services of the model program under the grant.
`(3) DATA COLLECTION AND REPORT-
`(A) IN GENERAL- To provide for effective patient navigator program evaluation,
a grant recipient under this subsection shall collect specific patient
data with respect to navigation services provided to each patient served
through the program and shall establish and implement procedures and protocols,
consistent with applicable Federal and State laws (including sections
160 and 164 of title 45, Code of Federal Regulations) to ensure the confidentiality
of all information shared by a patient in the program (or their personal
representative) and their health care providers, group health plans, or
health insurance insurers.
`(B) USE OF DATA- A grant recipient under this subsection may, consistent
with applicable Federal and State confidentiality laws, collect, use,
or disclose aggregate information that is not individually identifiable
(as such term is defined for purposes of sections 160 and 164 of title
45 Code of Federal Regulations).
`(C) REPORT- Using data collected under this paragraph, a grantee shall
prepare and submit to the Director of the Service an annual report that
summarizes and analyzes such data and provides information on the need
for navigation services, the types of access difficulties resolved, the
sources of repeated resolutions, and the flaws in the system of access,
including insurance barriers.
`(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Director of the Service
and the application is in such form, is made in such manner, and contains
such agreements, assurances, and information as the Director determines
to be necessary to carry out this section.
`(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-
`(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.'.
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