10-5-04
Passed House by Voice Vote
108th CONGRESS
1st Session
H. R. 918
To authorize the Health Resources and Services Administration, the
National Cancer Institute, and the Indian Health Service to make grants for
model programs to provide to individuals of health disparity populations prevention,
early detection, treatment, and appropriate follow-up care services for cancer
and chronic diseases, and to make grants regarding patient navigators to assist
individuals of health disparity populations in receiving such services.
IN THE HOUSE OF REPRESENTATIVES
February 26, 2003
Mr. MENENDEZ (for himself, Ms. PRYCE of Ohio, Mr. GREEN of Texas, Ms. ROS-LEHTINEN,
Mr. THOMPSON of Mississippi, Mr. LINCOLN DIAZ-BALART of Florida, Mr. RODRIGUEZ,
Mrs. WILSON of New Mexico, Mrs. CHRISTENSEN, Mr. QUINN, Mr. SERRANO, Mr. MCCOTTER,
Mr. PALLONE, Mr. PEARCE, Mr. UDALL of New Mexico, and Mr. MARIO DIAZ-BALART
of Florida) introduced the following bill; which was referred to the Committee
on Energy and Commerce and in addition to the Committee on Resources, for
a period to be subsequently determined by the Speaker, in each case for consideration
of such provisions as fall within the jurisdiction of the committee concerned
A BILL
To authorize the Health Resources and Services Administration, the
National Cancer Institute, and the Indian Health Service to make grants for
model programs to provide to individuals of health disparity populations prevention,
early detection, treatment, and appropriate follow-up care services for cancer
and chronic diseases, and to make grants regarding patient navigators to assist
individuals of health disparity populations in receiving such services.
Be it enacted by the Senate and House of Representatives of the United
States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the `Patient Navigator, Outreach, and Chronic Disease
Prevention Act of 2003'.
SEC. 2. FINDINGS.
The Congress finds as follows:
(1) Despite notable progress in the overall health of the Nation, there
are continuing disparities in the burden of illness and death experienced
by African Americans, Latinos and Hispanics, Native Americans, Alaska Natives,
Asian and Pacific Islanders and the poor, compared to the United States
population as a whole.
(2) Many racial and ethnic minority groups suffer disproportionately from
cancer. Mortality and morbidity rates remain the most important measures
of the overall progress against cancer. Decreasing rates of death from cancer
reflect improvements in both prevention and treatment. Among all ethnic
groups in the United States, African American males have the highest overall
rate of mortality from cancer. Some specific forms of cancer affect other
ethnic minority communities at rates up to several times higher than the
national averages (such as stomach and liver cancers among Asian American
populations, colon and rectal cancer among Alaska natives, and cervical
cancer among Hispanic and Vietnamese-American women).
(3) Regions characterized by high rates of poverty also have high mortality
for some forms of cancer. For example, in Appalachian Kentucky the incidence
of lung cancer among white males was 127 per 100,000 in 1992, a rate higher
than that for any ethnic minority group in the United States during the
same period.
(4) Major disparities for other chronic diseases exist among population
groups, with a disproportionate burden of death and disability from cardiovascular
disease in racial and ethnic minority and low-income populations. Compared
with rates for the general population, coronary heart disease mortality
was 40 percent lower for Asian Americans but 40 percent higher for African-Americans.
(5) Minority populations are disproportionately impacted by diabetes and
other chronic diseases. Hispanics are twice as likely to have diabetes as
non-Hispanic whites; diabetes is the fourth leading cause of death among
Hispanic women and elderly. African Americans are 1.7 times as likely to
have diabetes as the general population. More than 15 percent of the combined
populations of Native Americans and Alaska Natives have diabetes.
(6) Culturally competent approaches to chronic disease care are needed to
encourage increased participation of racial and ethnic minorities and the
medically underserved in chronic disease prevention, early detection and
treatment programs.
SEC. 3. HRSA GRANTS FOR MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE
AND PREVENTION; HRSA GRANTS FOR PATIENT NAVIGATORS.
Subpart I of part D of title III of the Public Health Service Act (42 U.S.C.
254b et seq.) is amended by adding at the end the following:
`SEC. 330I. MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION;
PATIENT NAVIGATORS.
`(a) MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION-
`(1) IN GENERAL- The Secretary, acting through the Administrator of the
Health Resources and Services Administration, may make grants to public
and nonprofit private health centers (including health centers under section
330, Indian Health Service Centers, tribal governments, urban Indian organizations,
tribal organizations, clinics serving Asian Americans and Pacific Islanders
and Alaskan Natives, and rural health clinics and qualified nonprofit entities
that partner with one or more centers providing health care to provide navigation
services,
which demonstrate the ability to perform all of the functions outlined in
this subsection and subsections (b) and (c)) for the development and operation
of model programs that--
`(A) provide to individuals of health disparity populations prevention,
early detection, treatment, and appropriate follow-up care services for
cancer and chronic diseases;
`(B) ensure that the health services are provided to such individuals
in a culturally competent manner;
`(C) assign patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations to--
`(i) accomplish, to the extent possible, the follow-up and diagnosis
of an abnormal finding and the treatment and appropriate follow-up care
of cancer or other chronic disease; and
`(ii) facilitate access to appropriate health care services within the
health care system to ensure optimal patient utilization of such services,
including aid in coordinating and scheduling appointments and referrals,
community outreach, assistance with transportation arrangements, and
assistance with insurance issues and other barriers to care and providing
information about clinical trials;
`(D) require training for patient navigators employed through such model
programs to ensure the ability of navigators to perform all of the duties
required in this subsection and in subsection (b), including training
to ensure that navigators are informed about health insurance systems
and are able to aid patients in resolving access issues; and
`(E) ensure that consumers have direct access to patient navigators during
regularly scheduled hours of business operation.
`(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public
and the specific community that the program is serving of the services of
the model program under the grant. Such activities shall include facilitating
access to appropriate health care services and patient navigators within
the health care system to ensure optimal patient utilization of these services.
`(3) DATA COLLECTION AND REPORT- In order to allow for effective program
evaluation, the grantee shall collect specific patient data recording services
provided to each patient served by the program and shall establish and implement
procedures and protocols, consistent with applicable Federal and State laws
(including 45 C.F.R. 160 and 164) to ensure the confidentiality of all information
shared by a participant in the program, or their personal representative
and their health care providers, group health plans, or health insurance
insurers with the program. The program may, consistent with applicable Federal
and State confidentiality laws, collect, use or disclose aggregate information
that is not individually identifiable (as defined in 45 C.F.R. 160 and 164).
With this data, the grantee shall submit an annual report to the Secretary
that summarizes and analyzes these data, provides information on needs for
navigation services, types of access difficulties resolved, sources of repeated
resolution and flaws in the system of access, including insurance barriers.
`(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Secretary and the application
is in such form, is made in such manner, and contains such agreements, assurances,
and information as the Secretary determines to be necessary to carry out
this section.
`(A) IN GENERAL- The Secretary, acting through the Administrator of the
Health Resources and Services Administration, shall, directly or through
grants or contracts, provide for evaluations to determine which outreach
activities under paragraph (2) were most effective in informing the public
and the specific community that the program is serving of the model program
services and to determine the extent to which such programs were effective
in providing culturally competent services to the health disparity population
served by the programs.
`(B) DISSEMINATION OF FINDINGS- The Secretary shall as appropriate disseminate
to public and private entities the findings made in evaluations under
subparagraph (A).
`(6) COORDINATION WITH OTHER PROGRAMS- The Secretary shall coordinate the
program under this subsection with the program under subsection (b), with
the program under section 417D, and to the extent practicable, with programs
for prevention centers that are carried out by the Director of the Centers
for Disease Control and Prevention.
`(b) PROGRAM FOR PATIENT NAVIGATORS-
`(1) IN GENERAL- The Secretary, acting through the Administrator of the
Health Resources and Services Administration, may make grants to public
and nonprofit private health centers (including health centers under section
330, Indian Health Service Centers, tribal governments, urban Indian organizations,
tribal organizations, clinics serving Asian Americans and Pacific Islanders
and Alaskan Natives, and rural health clinics and qualified nonprofit entities
that partner with one or more centers providing health care to provide navigation
services, which demonstrate the ability to perform all of the functions
outlined in this subsection and subsections (a) and (c)) for the development
and operation of programs to pay the costs of such health centers in--
`(A) assigning patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations for the duration of receiving health services from the health
centers, including aid in coordinating and scheduling appointments and
referrals, community outreach, assistance with transportation arrangements,
and assistance with insurance issues and other barriers to care and providing
information about clinical trials;
`(B) ensuring that the services provided by the patient navigators to
such individuals include case management and psychosocial assessment and
care or information and referral to such services;
`(C) ensuring that patient navigators with direct knowledge of the communities
they serve provide services to such individuals in a culturally competent
manner;
`(D) developing model practices for patient navigators, including with
respect to--
`(i) coordination of health services, including psychosocial assessment
and care;
`(ii) appropriate follow-up care, including psychosocial assessment
and care;
`(iii) determining coverage under health insurance and health plans
for all services;
`(iv) ensuring the initiation, continuation and/or sustained access
to care prescribed by the patients' health care providers; and
`(v) aiding patients with health insurance coverage issues;
`(E) requiring training for patient navigators to ensure the ability of
navigators to perform all of the duties required in this subsection and
in subsection (a), including training to ensure that navigators are informed
about health insurance systems and are able to aid patients in resolving
access issues; and
`(F) ensuring that consumers have direct access to patient navigators
during regularly scheduled hours of business operation.
`(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public
and the specific community that the patient navigator is serving of the
services of the model program under the grant.
`(3) DATA COLLECTION AND REPORT- In order to allow for effective patient
navigator program evaluation, the grantee shall collect specific patient
data recording navigation services provided to each patient served by the
program and shall establish and implement procedures and protocols, consistent
with applicable Federal and State laws (including 45 C.F.R. 160 and 164)
to ensure the confidentiality of all information shared by a participant
in the program, or their personal representative and their health care providers,
group health plans, or health insurance insurers with the program. The patient
navigator program may, consistent with applicable Federal and State confidentiality
laws, collect, use or disclose aggregate information that is not individually
identifiable (as defined in 45 C.F.R. 160 and 164). With this data, the
grantee shall submit an annual report to the Secretary that summarizes and
analyzes these data, provides information on needs for navigation services,
types of access difficulties resolved, sources of repeated resolution and
flaws in the system of access, including insurance barriers.
`(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Secretary and the application
is in such form, is made in such manner, and contains such agreements, assurances,
and information as the Secretary determines to be necessary to carry out
this section.
`(A) IN GENERAL- The Secretary, acting through the Administrator of the
Health Resources and Services Administration, shall, directly or through
grants or contracts, provide for evaluations to determine the effects
of the services of patient navigators on the individuals of health disparity
populations for whom the services were provided, taking into account the
matters referred to in paragraph (1)(C).
`(B) DISSEMINATION OF FINDINGS- The Secretary shall as appropriate disseminate
to public and private entities the findings made in evaluations under
subparagraph (A).
`(6) COORDINATION WITH OTHER PROGRAMS- The Secretary shall coordinate the
program under this subsection with the program under subsection (a) and
with the program under section 417D.
`(c) REQUIREMENTS REGARDING FEES-
`(1) IN GENERAL- A condition for the receipt of a grant under subsection
(a)(1) or (b)(1) is that the program for which the grant is made have in
effect--
`(A) a schedule of fees or payments for the provision of its health care
services related to the prevention and treatment of disease that is consistent
with locally prevailing rates or charges and is designed to cover its
reasonable costs of operation; and
`(B) a corresponding schedule of discounts to be applied to the payment
of such fees or payments, which discounts are adjusted on the basis of
the ability of the patient to pay.
`(2) RULE OF CONSTRUCTION- Nothing in this section shall be construed to
require payment for navigation services or to require payment for health
care services in cases where care is provided free of charge, including
the case of services provided through programs of the Indian Health Service.
`(d) MODEL- Not later than five years after the date of the enactment of this
section, the Secretary shall develop a peer-reviewed model of systems for
the services provided by this section. The Secretary shall update such model
as may be necessary to ensure that the best practices are being utilized.
`(e) DURATION OF GRANT- The period during which payments are made to an entity
from a grant under subsection (a)(1) or (b)(1) may not exceed five years.
The provision of such payments are subject to annual approval by the Secretary
of the payments and subject to the availability of appropriations for the
fiscal year involved to make the payments. This subsection may not be construed
as establishing a limitation on the number of grants under such subsection
that may be made to an entity.
`(f) DEFINITIONS- For purposes of this section:
`(1) The term `culturally competent', with respect to providing health-related
services, means services that, in accordance with standards and measures
of the Secretary, are designed to effectively and efficiently respond to
the cultural and linguistic needs of patients.
`(2) The term `appropriate follow-up care' includes palliative and end-of-life
care.
`(3) The term `health disparity population' means a population where there
exists a significant disparity in the overall rate of disease incidence,
morbidity, mortality, or survival rates in the population as compared to
the health status of the general population. Such term includes--
`(A) racial and ethnic minority groups as defined in section 1707; and
`(B) medically underserved groups, such as rural and low-income individuals
and individuals with low levels of literacy.
`(4)(A) The term `patient navigator' means an individual whose functions
include--
`(i) assisting and guiding patients with a symptom or an abnormal finding
or diagnosis of cancer or other chronic disease within the health care
system to accomplish the follow-up and diagnosis of an abnormal finding
as well as the treatment and appropriate follow-up care of cancer or other
chronic disease including providing information about clinical trials;
and
`(ii) identifying, anticipating, and helping patients overcome barriers
within the health care system to ensure prompt diagnostic and treatment
resolution of an abnormal finding of cancer or other chronic disease.
`(B) Such term includes representatives of the target health disparity population,
such as nurses, social workers, cancer survivors, and patient advocates.
`(g) AUTHORIZATION OF APPROPRIATIONS-
`(A) MODEL PROGRAMS- For the purpose of carrying out subsection (a) (other
than the purpose described in paragraph (2)(A)), there are authorized
to be appropriated such sums as may be necessary for each of the fiscal
years 2004 through 2008.
`(B) PATIENT NAVIGATORS- For the purpose of carrying out subsection (b)
(other than the purpose described in paragraph (2)(B)), there are authorized
to be appropriated such sums as may be necessary for each of the fiscal
years 2004 through 2008.
`(C) BUREAU OF PRIMARY HEALTH CARE- Amounts appropriated under subparagraph
(A) or (B) shall be administered through the Bureau of Primary Health
Care.
`(2) PROGRAMS IN RURAL AREAS-
`(A) MODEL PROGRAMS- For the purpose of carrying out subsection (a) by
making grants under such subsection for model programs in rural areas,
there are authorized to be appropriated such sums as may be necessary
for each of the fiscal years 2004 through 2008.
`(B) PATIENT NAVIGATORS- For the purpose of carrying out subsection (b)
by making grants under such subsection for programs in rural areas, there
are authorized to be appropriated such sums as may be necessary for each
of the fiscal years 2004 through 2008.
`(C) OFFICE OF RURAL HEALTH POLICY- Amounts appropriated under subparagraph
(A) or (B) shall be administered through the Office of Rural Health Policy.
`(3) RELATION TO OTHER AUTHORIZATIONS- Authorizations of appropriations
under paragraphs (1) and (2) are in addition to other authorizations of
appropriations that are available for the purposes described in such paragraphs.'.
SEC. 4. NCI GRANTS FOR MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND
PREVENTION; NCI GRANTS FOR PATIENT NAVIGATORS.
Subpart 1 of part C of title IV of the Public Health Service Act (42 U.S.C.
285 et seq.) is amended by adding at the end following section:
`SEC. 417D. MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION;
PATIENT NAVIGATORS.
`(a) MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION-
`(1) IN GENERAL- The Director of the Institute may make grants to eligible
entities for the development and operation of model programs that--
`(A) provide to individuals of health disparity populations prevention,
early detection, treatment, and appropriate follow-up care services for
cancer and chronic diseases;
`(B) ensure that the health services are provided to such individuals
in a culturally competent manner;
`(C) assign patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations to--
`(i) accomplish, to the extent possible, the follow-up and diagnosis
of an abnormal finding and the treatment and appropriate follow-up care
of cancer or other chronic disease; and
`(ii) facilitate access to appropriate health care services within the
health care system to ensure optimal patient utilization of such services,
including aid in coordinating and scheduling appointments and referrals,
community outreach, assistance with transportation arrangements, and
assistance with insurance issues and other barriers to care and providing
information about clinical trials;
`(D) require training for patient navigators employed through such model
programs to ensure the ability of navigators to perform all of the duties
required in this subsection and in subsection (b), including training
to ensure that navigators are informed about health insurance systems
and are able to aid patients in resolving access issues; and
`(E) ensure that consumers have direct access to patient navigators during
regularly scheduled hours of business operation.
`(2) ELIGIBLE ENTITIES- For purposes of this section, an eligible entity
is a designated cancer center of the Institute, an academic institution,
Indian Health Service Clinics, tribal governments, urban Indian organizations,
tribal organizations, a hospital, a qualified nonprofit entity that partners
with one or more centers providing health care to provide navigation services,
which demonstrates the ability to perform all of the functions outlined
in this subsection and subsections (b) and (c), or any other public or private
entity determined to be appropriate by the Director of the Institute, that
provides services described in paragraph (1)(A) for cancer and chronic diseases.
`(3) DATA COLLECTION AND REPORT- In order to allow for effective program
evaluation, the grantee shall collect specific patient data recording services
provided to each patient served by the program and shall establish and implement
procedures and protocols, consistent with applicable Federal and State laws
(including 45 C.F.R. 160 and 164) to ensure the confidentiality of all information
shared by a participant in the program, or their personal representative
and their health care providers, group health plans, or health insurance
insurers with the program. The program may, consistent with applicable Federal
and State confidentiality laws, collect, use or disclose aggregate information
that is not individually identifiable (as defined in 45 CFR 160 and 164).
With this data, the grantee shall submit an annual report to the Secretary
that summarizes and analyzes these data, provides information on needs for
navigation services, types of access difficulties resolved, sources of repeated
resolution and flaws in the system of access, including insurance barriers.
`(4) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public
and the specific community that the program is serving of the services of
the model program under the grant. Such activities shall include facilitating
access to appropriate health care services and patient navigators within
the health care system to ensure optimal patient utilization of these services.
`(5) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Director of the Institute
and the application is in such form, is made in such manner, and contains
such agreements, assurances, and information as the Director determines
to be necessary to carry out this section.
`(A) IN GENERAL- The Director of the Institute, directly or through grants
or contracts, shall provide for evaluations to determine which outreach
activities under paragraph (3) were most effective in informing the public
and the specific community that the program is serving of the model program
services and to determine the extent to which such programs were effective
in providing culturally competent services to the health disparity population
served by the programs.
`(B) DISSEMINATION OF FINDINGS- The Director of the Institute shall as
appropriate disseminate to public and private entities the findings made
in evaluations under subparagraph (A).
`(7) COORDINATION WITH OTHER PROGRAMS- The Secretary shall coordinate the
program under this subsection with the program under
subsection (b), with the program under section 330I, and to the extent practicable,
with programs for prevention centers that are carried out by the Director
of the Centers for Disease Control and Prevention.
`(b) PROGRAM FOR PATIENT NAVIGATORS-
`(1) IN GENERAL- The Director of the Institute may make grants to eligible
entities for the development and operation of programs to pay the costs
of such entities in--
`(A) assigning patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations for the duration of receiving health services from the health
centers, including aid in coordinating and scheduling appointments and
referrals, community outreach, assistance with transportation arrangements,
and assistance with insurance issues and other barriers to care and providing
information about clinical trials;
`(B) ensuring that the services provided by the patient navigators to
such individuals include case management and psychosocial assessment and
care or information and referral to such services;
`(C) ensuring that the patient navigators with direct knowledge of the
communities they serve provide services to such individuals in a culturally
competent manner;
`(D) developing model practices for patient navigators, including with
respect to--
`(i) coordination of health services, including psychosocial assessment
and care;
`(ii) follow-up services, including psychosocial assessment and care;
`(iii) determining coverage under health insurance and health plans
for all services;
`(iv) ensuring the initiation, continuation and/or sustained access
to care prescribed by the patients' health care providers; and
`(v) aiding patients with health insurance coverage issues;
`(E) requiring training for patient navigators to ensure the ability of
navigators to perform all of the duties required in this subsection and
in subsection (a), including training to ensure that navigators are informed
about health insurance systems and are able to aid patients in resolving
access issues; and
`(F) ensuring that consumers have direct access to patient navigators
during regularly scheduled hours of business operation.
`(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public
and the specific community that the patient navigator is serving of the
services of the model program under the grant.
`(3) DATA COLLECTION AND REPORT- In order to allow for effective patient
navigator program evaluation, the grantee shall collect specific patient
data recording navigation services provided to each patient served by the
program and shall establish and implement procedures and protocols, consistent
with applicable Federal and State laws (including 45 C.F.R. 160 and 164)
to ensure the confidentiality of all information shared by a participant
in the program, or their personal representative and their health care providers,
group health plans, or health insurance insurers with the program. The patient
navigator program may, consistent with applicable Federal and State confidentiality
laws, collect, use or disclose aggregate information that is not individually
identifiable (as defined in 45 C.F.R. 160 and 164). With this data, the
grantee shall submit an annual report to the Secretary that summarizes and
analyzes these data, provides information on needs for navigation services,
types of access difficulties resolved, sources of repeated resolution and
flaws in the system of access, including insurance barriers.
`(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Director of the Institute
and the application is in such form, is made in such manner, and contains
such agreements, assurances, and information as the Director determines
to be necessary to carry out this section.
`(A) IN GENERAL- The Director of the Institute, directly or through grants
or contracts, shall provide for evaluations to determine the effects of
the services of patient navigators on the health disparity population
for whom the services were provided, taking into account the matters referred
to in paragraph (1)(C).
`(B) DISSEMINATION OF FINDINGS- The Director of the Institute shall as
appropriate disseminate to public and private entities the findings made
in evaluations under subparagraph (A).
`(6) COORDINATION WITH OTHER PROGRAMS- The Secretary shall coordinate the
program under this subsection with the program under subsection (a) and
with the program under section 330I.
`(c) REQUIREMENTS REGARDING FEES-
`(1) IN GENERAL- A condition for the receipt of a grant under subsection
(a)(1) or (b)(1) is that the program for which the grant is made have in
effect--
`(A) a schedule of fees or payments for the provision of its health care
services related to the prevention and treatment of disease that is consistent
with locally prevailing rates or charges and is designed to cover its
reasonable costs of operation; and
`(B) a corresponding schedule of discounts to be applied to the payment
of such fees or payments, which discounts are adjusted on the basis of
the ability of the patient to pay.
`(2) RULE OF CONSTRUCTION- Nothing in this section shall be construed to
require payment for navigation services or to require payment for health
care services in cases where care is provided free of charge, including
the case of services provided through programs of the Indian Health Service.
`(d) MODEL- Not later than five years after the date of the enactment of this
section, the Director of the Institute shall develop a peer-reviewed model
of systems for the services provided by this section. The Director shall update
such model as may be necessary to ensure that the best practices are being
utilized.
`(e) DURATION OF GRANT- The period during which payments are made to an entity
from a grant under subsection (a)(1) or (b)(1) may not exceed five years.
The provision of such payments are subject to annual approval by the Director
of the Institute of the payments and subject to the availability of appropriations
for the fiscal year involved to make the payments. This subsection may not
be construed as establishing a limitation on the number of grants under such
subsection that may be made to an entity.
`(f) DEFINITIONS- For purposes of this section:
`(1) The term `culturally competent', with respect to providing health-related
services, means services that, in accordance with standards and measures
of the Secretary, are designed to effectively and efficiently respond to
the cultural and linguistic needs of patients.
`(2) the term `appropriate follow-up care' includes palliative and end-of-life
care.
`(3) the term `health disparity population' means a population where there
exists a significant disparity in the overall rate of disease incidence,
morbidity, mortality, or survival rates in the population as compared to
the health status of the general population. Such term includes--
`(A) racial and ethnic minority groups as defined in section 1707; and
`(B) medically underserved groups, such as rural and low-income individuals
and individuals with low levels of literacy.
`(4)(A) the term `patient navigator' means an individual whose functions
include--
`(i) assisting and guiding patients with a symptom or an abnormal finding
or diagnosis of cancer or other chronic disease within the health care
system to accomplish the follow-up and diagnosis of an abnormal finding
as well as the treatment and appropriate follow-up care of cancer or other
chronic disease, including providing information about clinical trials;
and
`(ii) identifying, anticipating, and helping patients overcome barriers
within the health care system to ensure prompt diagnostic and treatment
resolution of an abnormal finding of cancer or other chronic disease.
`(B) Such term includes representatives of the target health disparity population,
such as nurses, social workers, cancer survivors, and patient advocates.
`(g) AUTHORIZATION OF APPROPRIATIONS-
`(1) MODEL PROGRAMS- For the purpose of carrying out subsection (a), there
are authorized to be appropriated such sums as may be necessary for each
of the fiscal years 2004 through 2008.
`(2) PATIENT NAVIGATORS- For the purpose of carrying out subsection (b),
there are authorized to be appropriated such sums as may be necessary for
each of the fiscal years 2004 through 2008.
`(3) RELATION TO OTHER AUTHORIZATIONS- Authorizations of appropriations
under paragraphs (1) and (2) are in addition to other authorizations of
appropriations that are available for the purposes described in such paragraphs.'.
SEC. 5. IHS GRANTS FOR MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND
PREVENTION; IHS GRANTS FOR PATIENT NAVIGATORS.
(a) MODEL COMMUNITY CANCER AND CHRONIC DISEASE CARE AND PREVENTION-
(1) IN GENERAL- The Director of the Indian Health Service may make grants
to Indian Health Service Centers, tribal governments, urban Indian organizations,
tribal organizations, and qualified nonprofit entities demonstrating the
ability to perform all of the functions outlined in this subsection and
subsections (b) and (c) that partner with providers or centers providing
health care serving Native American populations to provide navigation services,
for the development and operation of model programs that--
(A) provide to individuals of health disparity populations prevention,
early detection,
treatment, and appropriate follow-up care services for cancer and chronic
diseases;
(B) ensure that the health services are provided to such individuals in
a culturally competent manner;
(C) assign patient navigators, in accordance with applicable criteria
of the Secretary, for managing the care of individuals of health disparity
populations to--
(i) accomplish, to the extent possible, the follow-up and diagnosis
of an abnormal finding and the treatment and appropriate follow-up care
of cancer or other chronic disease; and
(ii) facilitate access to appropriate health care services within the
health care system to ensure optimal patient utilization of such services,
including aid in coordinating and scheduling appointments and referrals,
community outreach, assistance with transportation arrangements, and
assistance with insurance issues and other barriers to care and providing
information about clinical trials;
(D) require training for patient navigators employed through such model
programs to ensure the ability of navigators to perform all of the duties
required in this subsection and in subsection (b), including training
to ensure that navigators are informed about health insurance systems
and are able to aid patients in resolving access issues; and
(E) ensure that consumers have direct access to patient navigators during
regularly scheduled hours of business operation.
(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public
and the specific community that the program is serving of the services of
the model program under the grant. Such activities shall include facilitating
access to appropriate health care services and patient navigators within
the health care system to ensure optimal patient utilization of these services.
(3) DATA COLLECTION AND REPORT- In order to allow for effective program
evaluation, the grantee shall collect specific patient data recording services
provided to each patient served by the program and shall establish and implement
procedures and protocols, consistent with applicable Federal and State laws
(including 45 C.F.R. 160 and 164) to ensure the confidentiality of all information
shared by a participant in the program, or their personal representative
and their health care providers, group health plans, or health insurance
insurers with the program. The program may, consistent with applicable Federal
and State confidentiality laws, collect, use or disclose aggregate information
that is not individually identifiable (as defined in 45 C.F.R. 160 and 164).
With this data, the grantee shall submit an annual report to the Secretary
that summarizes and analyzes these data, provides information on needs for
navigation services, types of access difficulties resolved, sources of repeated
resolution and flaws in the system of access, including insurance barriers.
(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Secretary and the application
is in such form, is made in such manner, and contains such agreements, assurances,
and information as the Secretary determines to be necessary to carry out
this section.
(A) IN GENERAL- The Secretary, acting through the Director of the Indian
Health Service, shall, directly or through grants or contracts, provide
for evaluations to determine which outreach activities under paragraph
(2) were most effective in informing the public and the specific community
that the program is serving of the model program services and to determine
the extent to which such programs were effective in providing culturally
competent services to the health disparity population served by the programs.
(B) DISSEMINATION OF FINDINGS- The Secretary shall as appropriate disseminate
to public and private entities the findings made in evaluations under
subparagraph (A).
(6) COORDINATION WITH OTHER PROGRAMS- The Secretary shall coordinate the
program under this subsection with the program under subsection (b), with
the program under section 417D, and to the extent practicable, with programs
for prevention centers that are carried out by the Director of the Centers
for Disease Control and Prevention.
(b) PROGRAM FOR PATIENT NAVIGATORS-
(1) IN GENERAL- The Secretary, acting through the Director of the Indian
Health Service, may make grants to Indian Health Service Centers, tribal
governments, urban Indian organizations, tribal organizations, and qualified
nonprofit entities demonstrating the ability to perform all of the functions
outlined in this subsection and subsections (a) and (c) that partner with
providers or centers providing health care serving Native American populations
to provide navigation services, for the development and operation of model
programs to pay the costs of such organizations in--
(A) assigning patient navigators, in accordance with applicable criteria
of the Secretary, for individuals of health disparity populations for
the duration of receiving health services from the health centers, including
aid in coordinating and scheduling appointments and referrals, community
outreach, assistance with transportation arrangements, and assistance
with insurance issues and other barriers to care and providing information
about clinical trials;
(B) ensuring that the services provided by the patient navigators to such
individuals include case management and psychosocial assessment and care
or information and referral to such services;
(C) ensuring that patient navigators with direct knowledge of the communities
they serve provide services to such individuals in a culturally competent
manner;
(D) developing model practices for patient navigators, including with
respect to--
(i) coordination of health services, including psychosocial assessment
and care;
(ii) appropriate follow-up care, including psychosocial assessment and
care;
(iii) determining coverage under health insurance and health plans for
all services;
(iv) ensuring the initiation, continuation and/or sustained access to
care prescribed by the patients' health care providers; and
(v) aiding patients with health insurance coverage issues;
(E) requiring training for patient navigators to ensure the ability of
navigators to perform all of the duties required in this subsection and
in subsection (a), including training to ensure that navigators are informed
about health insurance systems and are able to aid patients in resolving
access issues; and
(F) ensuring that consumers have direct access to patient navigators during
regularly scheduled hours of business operation.
(2) OUTREACH SERVICES- A condition for the receipt of a grant under paragraph
(1) is that the applicant involved agree to provide ongoing outreach activities
while receiving the grant, in a manner that is culturally competent for
the health disparity population served by the program, to inform the public
and the specific community that the patient navigator is serving of the
services of the model program under the grant.
(3) DATA COLLECTION AND REPORT- In order to allow for effective patient
navigator program evaluation, the grantee shall collect specific patient
data recording navigation services provided to each patient served by the
program and shall establish and implement procedures and protocols, consistent
with applicable Federal and State laws (including 45 C.F.R. 160 and 164)
to ensure the confidentiality of all information shared by a participant
in the program, or their personal representative and their health care providers,
group health plans, or health insurance insurers with the program. The patient
navigator program may, consistent with applicable Federal and State confidentiality
laws, collect, use or disclose aggregate information that is not individually
identifiable (as defined in 45 C.F.R. 160 and 164). With this data, the
grantee shall submit an annual report to the Secretary that summarizes and
analyzes these data, provides information on needs for navigation services,
types of access difficulties resolved, sources of repeated resolution and
flaws in the system of access, including insurance barriers.
(4) APPLICATION FOR GRANT- A grant may be made under paragraph (1) only
if an application for the grant is submitted to the Secretary and the application
is in such form, is made in such manner, and contains such agreements, assurances,
and information as the Secretary determines to be necessary to carry out
this section.
(A) IN GENERAL- The Secretary, acting through the Director of the Indian
Health Service, shall, directly or through grants or contracts, provide
for evaluations to determine the effects of the services of patient navigators
on the individuals of health disparity populations for whom the services
were provided, taking into account the matters referred to in paragraph
(1)(C).
(B) DISSEMINATION OF FINDINGS- The Secretary shall as appropriate disseminate
to public and private entities the findings made in evaluations under
subparagraph (A).
(6) COORDINATION WITH OTHER PROGRAMS- The Secretary shall coordinate the
program under this subsection with the program under subsection (a) and
with the program under section 417D.
(c) REQUIREMENTS REGARDING FEES-
(1) IN GENERAL- A condition for the receipt of a grant under subsection
(a)(1) or (b)(1) is that the program for which the grant is made have in
effect--
(A) a schedule of fees or payments for the provision of its health care
services related to the prevention and treatment of disease that is consistent
with locally prevailing rates or charges and is designed to cover its
reasonable costs of operation; and
(B) a corresponding schedule of discounts to be applied to the payment
of such fees or
payments, which discounts are adjusted on the basis of the ability of the
patient to pay.
(2) RULE OF CONSTRUCTION- Nothing in this section shall be construed to
require payment for navigation services or to require payment for health
care services in cases, such as with the Indian Health Service, where care
is provided free of charge.
(d) MODEL- Not later than five years after the date of the enactment of this
section, the Secretary shall develop a peer-reviewed model of systems for
the services provided by this section. The Secretary shall update such model
as may be necessary to ensure that the best practices are being utilized.
(e) DURATION OF GRANT- The period during which payments are made to an entity
from a grant under subsection (a)(1) or (b)(1) may not exceed five years.
The provision of such payments are subject to annual approval by the Secretary
of the payments and subject to the availability of appropriations for the
fiscal year involved to make the payments. This subsection may not be construed
as establishing a limitation on the number of grants under such subsection
that may be made to an entity.
(f) DEFINITIONS- For purposes of this section:
(1) The term `culturally competent', with respect to providing health-related
services, means services that, in accordance with standards and measures
of the Secretary, are designed to effectively and efficiently respond to
the cultural and linguistic needs of patients.
(2) The term `appropriate follow-up care' includes palliative and end-of-life
care.
(3) The term `health disparity population' means a population where there
exists a significant disparity in the overall rate of disease incidence,
morbidity, mortality, or survival rates in the population as compared to
the health status of the general population. Such term includes--
(A) racial and ethnic minority groups as defined in section 1707; and
(B) medically underserved groups, such as rural and low-income individuals
and individuals with low levels of literacy.
(4)(A) The term `patient navigator' means an individual whose functions
include--
(i) assisting and guiding patients with a symptom or an abnormal finding
or diagnosis of cancer or other chronic disease within the health care
system to accomplish the follow-up and diagnosis of an abnormal finding
as well as the treatment and appropriate follow-up care of cancer or other
chronic disease, including providing information about clinical trials;
and
(ii) identifying, anticipating, and helping patients overcome barriers
within the health care system to ensure prompt diagnostic and treatment
resolution of an abnormal finding of cancer or other chronic disease.
(B) Such term includes representatives of the target health disparity population,
such as nurses, social workers, cancer survivors, and patient advocates.
(g) AUTHORIZATION OF APPROPRIATIONS-
(A) MODEL PROGRAMS- For the purpose of carrying out subsection (a) (other
than the purpose described in paragraph (2)(A)), there are authorized
to be appropriated such sums as may be necessary for each of the fiscal
years 2004 through 2008.
(B) PATIENT NAVIGATORS- For the purpose of carrying out subsection (b)
(other than the purpose described in paragraph (2)(B)), there are authorized
to be appropriated such sums as may be necessary for each of the fiscal
years 2004 through 2008.
(C) BUREAU OF PRIMARY HEALTH 13 CARE- Amounts appropriated under subparagraph
(A) or (B) shall be administered through the Bureau of Primary Health
Care.
(2) PROGRAMS IN RURAL AREAS-
(A) MODEL PROGRAMS- For the purpose of carrying out subsection (a) by
making grants under such subsection for model programs in rural areas,
there are authorized to be appropriated such sums as may be necessary
for each of the fiscal years 2004 through 2008.
(B) PATIENT NAVIGATORS- For the purpose of carrying out subsection (b)
by making grants under such subsection for programs in rural areas, there
are authorized to be appropriated such sums as may be necessary for each
of the fiscal years 2004 through 2008.
(C) OFFICE OF RURAL HEALTH POLICY- Amounts appropriated under subparagraph
(A) or (B) shall be administered through the Office of Rural Health Policy.
(3) RELATION TO OTHER AUTHORIZATIONS- Authorizations of appropriations under
paragraphs (1) and (2) are in addition to other authorizations of appropriations
that are available for the purposes described in such paragraphs.
END
