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OCR for page 528
The Rationing of Healthcare and
Health Disparity for the American
Indians/Alaska Natives
fennie R. foe, Ph.D., M.P.H.7
Native American Research and Training Center
University of Arizona
At a recent meeting held to examine health disparities for American
Indians and Alaska Natives, Dr. Nathan Stinson, the deputy assistant
secretary for Minority Health, recalled how proud he was of himself when
as a resident he was able to see eight patients in a day. But when he joined
the federal Indian Health Service (IHS), he found it daunting that he could
only see, in one day, 75 of 100 Navajo patients. Dr. Stinson lamented:
I didn't allow people to have more than one problem . . . and when I walked away,
I didn't feel I'd done a very good job; I didn't give the best care I could, I didn't
speak the language, I didn't have the best facilities, and I turned away people
(Albuquerque journal, 20014.
The History of Health Disparities Among
American Indians/Alaska Natives
Health disparity has long haunted the lives of American Indians and
Alaska Natives, beginning with the European contact and continuing
over the next four centuries as tribe after tribe was either completely
decimated or severely depopulated by waves of communicable diseases
and by warfare. Although the types and severity of these health dispari-
ties have changed over time, some diseases continued to have an impact
on the surviving tribes after they were removed and resettled on federal
reservations.
~ The author would like to acknowledge the assistance of Jacquetta Swift, M.A., and Rob-
ert S. Young, Ph.D.
528
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
529
Today there are slightly over two million self-identified American In-
dians and Alaska Natives in the United States. While a majority live in the
western states, only 38 percent continue to reside on federal trust lands;
the rest now reside predominantly in off-reservation or urban communi-
ties. Substantial numbers among the latter are descendants of families that
were first relocated to the cities by the federal government in the 1950s
with promises of a better life and greater economic opportunities. While
most American Indians and Alaska Natives who moved to the cities
traded one form of poverty for another, most agree that poor economic
conditions on many reservations keep them in the cities.
Evidence-based documentation on the extent or types of health dis-
parities for all 500+ tribes and villages nationwide remains elusive, as is
information on the quality of healthcare provided to this population. Gen-
eral information, however, is available about some factors that contribute
to health disparities for American Indians and Alaska Natives, and this
information includes a number of geographic, cultural, education, and
financial barriers to adequate healthcare. Some information, for example,
indicates that a majority of American Indians/Alaska Natives have fewer
years of education and are three times more likely to live in poverty and
be uninsured than the U.S. general population (The Henry I. Kaiser Family
Foundation, 1997~.
The lack of health coverage was also underscored by researchers ex-
amining medical care expenditures. They found that only one in three
American Indians/Alaska Natives interviewed had private health insur-
ance, compared with 80 percent of whites, 52 percent of African Ameri-
cans, and 50 percent of Hispanics (Braden and Beauregard, 1993~. Many
of those uninsured reported that they depended solely on IHS for their
healthcare.
Unlike other minority populations in the United States, the federal
government has historically had a central role in healthcare delivery for
American Indians/Alaska Natives. Currently, IHS reports a service popu-
lation of approximately 1.51 million (IHS, 1998, 1999a). The users of IHS
services comprise a population that is young, with a median age of 24.2
compared with 32.9 years for the U.S., all races. Despite the young popu-
lation, the mortality picture for American Indians/Alaska Natives often
indicates diseases experienced by an older population. For instance, the
two leading causes of death for American Indian/Alaska Native women
are diseases of the heart and cancer; the two leading causes of death for
men are diseases of the heart and accidents (IHS, 1998, 1999a).
Health disparities for American Indians/Alaska Natives are also re-
flected in an array of other mortality and morbidity statistics. For example,
the most recent data (1994-1996) indicate the following causes of age-
adjusted death rates for American Indians/Alaska Natives that are greater
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530
UNEQUAL TREATMENT
than for the U.S., all races: 1) alcoholism 627 percent; 2) tuberculosis-
533 percent; 3) diabetes mellitus 249 percent; 4) accidents 204 percent;
5) suicide 72 percent; 6) pneumonia and influenza 71 percent; and 7)
homicide 63 percent (IHS, 1998, l999b:6~. While cancer incidences are
lower among American Indians/Alaska Natives, five-year survival rates
are significantly lower, in part because of stage at diagnosis and problems
with access to follow-up care.
In 2000, Dr. Michael Trujillo, the director of the IHS, attributed health
disparities for American Indians/Alaska Natives to a number of underly-
ing causes, including social and cultural disruption of tribal societies, poor
education, longstanding poverty, lack of political presence, limited access
to health services, and a widening gap in healthcare spending (Trujillo,
2000~. The spending gap for healthcare is especially telling when the IHS
per capita spending for healthcare is compared with other federal pro-
grams. The IHS2 annual per capita healthcare spending at $1,430 is less
than one-half that for the general U.S. population ($3,766~. This IHS per
capita spending is also substantially lower than that for Medicare ($3,369~;
Bureau of Prisons ($3,489~; and Veterans' Administration ($5,458) (FCNL,
2000~. Moreover, when the per capita figures are adjusted for rates of in-
flation, the per capita spending for Indian health in real dollars is lower
than it was in 1977 (FCNL, 2000~.
The role of the federal government in the healthcare of American In-
dians and Alaska Natives is rooted in history, in federal statutes, and in
various treaties negotiated with tribes prior to 1871 (AILTP, 1988~. Trea-
ties between the U.S. government and the tribes, for example, often in-
cluded modest provisions for a hospital, a physician, medical supplies,
and furnished housing for the physician. Other than allocation of funds to
fulfill specific treaty obligations with select tribes, Congress did not ap-
propriate funds for a health program for all American Indians and Alaska
Natives until 1832. It was then that monies were allocated for a smallpox
vaccination program for tribes deemed friendly to the United States and/
or for individuals who, if they contracted smallpox, would pose a health
threat to non-Indians in or near various military outposts (Stern and Stern,
1945~. Other similar one-time congressional appropriations for specific
health problems dot the history of Indian/federal relationship, but con-
cern over poor health conditions was not a major issue for staff employed
in the Office of Indian Affairs in the U.S. Department of War, an agency
preoccupied with other priorities.
In 1849, the Office of Indian Affairs was transferred from the War
Department to the newly established Department of Interior, where peri-
2The Level-of-Need Funding for THS is estimated at $15 billion. The fiscal year 2000 fund-
ing level for THS was approximately $2.4 billion (FCNE, 2000:2~.
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
531
odic reports by the staff mentioned unhealthy conditions on many reser-
vations, but these problems were not addressed, due to lack of authoriza-
tion and funding. The harsh living conditions on Indian Reservations,
however, continued to exacerbate the declining health status of the popu-
lation, fueled directly and indirectly by inadequate nutrition, unsanitary
conditions, substandard housing, and lack of healthcare. When these dev-
astating health conditions could no longer be ignored, the Secretary of
Interior commissioned a study to determine the status of tribes across the
country. The Meriam Report, published in 1928, documented the extreme
poverty and hardships faced by tribes and issued a number of recommen-
dations (Meriam,1928~. Unfortunately, the efforts initiated to correct some
of these problems were abruptly halted at the onset of WWII and were
never aggressively resumed.
The health conditions on most reservations therefore remained de-
plorable and periodically rekindled concerns of advocates who lobbied
for federal action (Trennert, 1998~. In 1954, Congress reacted by transfer-
ring the health responsibility from the Bureau of Indian Affairs (BIA) in
the Department of Interior to the U.S. Public Health Service (PHS), an
agency within what was then called the Department of Health, Education,
and Welfare.3 The transfer resulted in additional resources for IHS and
provided an opportunity for many subsequent IHS providers to enlist in
the PHS Commission Corp with all its military privileges and rank.
For American Indians and Alaska Natives, the War on Poverty in the
1960s served as the key staging ground for their quest for self-determina-
tion and self-governance. With direct funding from the Office of Economic
Opportunity (OEO), some tribes were able to initiate community-con-
trolled health and education programs, although most were on a small
scale. The success helped mobilize tribal communities across the country
to advocate for more local control and for a more active role in the federal
programs serving their communities. The mobilization helped build a
political voice in the Indian health arena, including fostering a number of
national organizations that focused primarily on health, such as the Na-
tional Indian Health Board. The chair of this national organization, Sally
Smith, an Alaska Native, recently reminded members of the Senate In-
dian Affairs Committee that:
For American Indian and Alaska Native people, the federal responsibility to
provide health services represents a "pre-paid" entitlement, paidfor by the ces-
sion of over 400 million acres of land to the United States. In many of the treaties
which were negotiated between Tribes and the U.S. government, specific provi-
sionsfor basic healthcare, such as the services of a physician and the construc-
tion and maintenance of hospitals and schools were included (FCNL, 20004.
3 Now known as Department of Health and Human Services (DHHS).
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532
UNEQUAL TREATMENT
In contrast to the conviction shared by many tribal leaders, the federal
government has maintained that federal support for health services for
American Indians/Alaska Natives is not an entitlement but is voluntary
(or discretionary). The government argues that health service is not man-
dated under the federal government's trust responsibility to the tribes and
that funds appropriated for Indian health are public monies and not treaty
or tribal money (OTA, 1986~. The federal government, however, also ac-
knowledges that the courts have relied on trust responsibility to construe
treaties or statutes in favor of tribes and that the Supreme Court has ruled
that special programs for American Indians and Alaska Natives are not
racial in nature, but are based on a unique political relationship between
Indian tribes and the federal government (OTA, 1986~.
Although the health services are not considered racially based, there
are strict eligibility requirements for those who access the Indian Health
Service. The general definition of who is eligible includes a number of
criteria, not least of which is the requirement that the individual be of
Indian descent, be regarded as a tribal member by his or her tribe, has
some legal evidence of tribal enrollment or a Certificate of Indian Blood,
resides on or near his or her federal reservation, and/or meets other local
requirements (OTA, 1986~. Generally, those who meet these eligibility re-
quirements are not subjected to an economic means test in order to re-
ceive service, although most American Indians/Alaska Natives served by
the federal IHS or tribal health programs are three times more likely to
live in poverty than other Americans (The Henry I. Kaiser Family Foun-
dation, 1997~.
Because federal funding for Indian healthcare has historically been
discretionary, improvement in healthcare resources for American Indi-
ans/Alaska Natives has continued to be piecemeal and void of consistent
longrange planning. Even when Congress passed the Snyder Act in 1921
(the first legislation to recognize a need to provide some ongoing federal
healthcare resource), the language remained broad and vague for the
"relief of distress and conservation of health and for the employment of
physicians" (OTA, 1986~. The Act did not encourage long-term planning,
nor did it provide resources based on need, but it did establish an annual
discretionary appropriation. The appropriation, which has fluctuated an-
nually since the 1920s, has also produced a rationed healthcare system
that continues today.
In an attempt to understand the piecemeal approach, one former BIA
employee posited that the vague federal commitments were most likely
influenced by the prevailing attitude of the 19th century that American
Indians and Alaska Natives would eventually vanish or disappear into
the American mainstream as they became "civilized" and assimilated. Ei-
ther outcome promised to help relieve the federal government of its trust
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
533
responsibility and/or its involvement in the "Indian" business (McNickle,
1973~.
The circumstances of dire health and poverty faced by most tribal
communities, however, overshadowed any large-scale motivation for as-
similation. Infectious diseases and poor sanitation continued to plague
the communities, although a number of these diseases and health condi-
tions such as tuberculosis and trachoma were targets of special govern-
mental interventions at various times. The special interventions, however,
left other dismal health conditions unchecked (Trennert, 1998~. For ex-
ample, the maternal mortality rate for American Indians/Alaska Natives
hovered near 82.6/100,000 live births between 1955 and 1982, a rate that
was nearly three times that for other women in the United States. This
rate declined significantly by 1991, but still remained higher than the U.S.
all races rate (The Henry I. Kaiser Family Foundation, 1997:5~.
Few would question the fact that mortality and morbidity statistics
declined after the transfer of the IHS to the US Public Health Service.
This has been credited to aggressive public health programs that pro-
moted immunizations and improved sanitation, as well as to other de-
velopments such as the introduction and use of antibiotics and the in-
creased health resources and manpower brought about by improved
funding (Rhoades et al., 1987~. An 82 percent decrease in infant and ma-
ternal mortality by the 1980s has been used to underscore these two im-
provements (Rhoades et al., 1987~. Other observers of Indian health sta-
tus, however, attributed the improvements to a national trend (Kunitz,
1983; Kunitz, 1996~.
Following the Snyder Act, the next major legislative milestone aimed
at addressing health disparities for American Indians and Alaska Natives
was vested in the passage of the Indian Health Improvement Act in 1976 (re-
authorized and amended since its passage). The intent of the statute was
clear on two points:
a) Federal health services to maintain and improve the health of Indi-
ans are consonant with and required by the federal government's histori-
cal and unique legal relationship with, and resulting responsibility to, the
American Indian people, and
b) A major national goal of the United States is to provide the quan-
tity and quality of health services which would permit the health status of
Indians to be raised to the highest possible level and to encourage the
maximum participation of Indians in the planning and management of
those services (Bergman et al., 1999:591~.
This legislative action provided much needed funding by: 1) improv-
ing health services; 2) improving the health infrastructure; 3) providing
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534
UNEQUAL TREATMENT
scholarships to train more American Indian/Alaska Native healthcare
providers; 4) allowing for Medicare and Medicaid reimbursements to IHS
or to tribal health programs; and 5) formally recognizing the healthcare
needs of tribal members living in off-reservation or urban areas (OTA,
1986~.
The Act also called for maximum participation of Indians in the plan-
ning and management of healthcare services, reinforcing an earlier stat-
ute: the Indian Self-Determination and Education and Assistance Act of 1975.
The Indian Self-Determination Act and its subsequent amendments have
allowed tribes to take over all or partial management of Indian programs
operated by the federal government under two alternatives contracting
or compacting. Under the former, tribes can negotiate to take over and
manage existing programs without making substantial programmatic
changes. Compacting, however, gives tribes more flexibility in re-priori-
tizing or changing the program to meet what they perceive to be the most
urgent healthcare needs in their communities.
Changes in the Healthcare Arena
The passage and the results of these two pieces of legislation have
substantially decreased the role of IHS as more and more tribes assumed
the management and delivery of direct healthcare. At the present time,
the tribes manage 13 hospitals, 158 outpatient health centers, 158 village
clinics in Alaska, 76 health stations, and five school health programs
(http://info.ihs.gov). According to the National Indian Health Board, the
redistribution of healthcare management has been primarily in compact-
ing. The Board reported in 1999 the following percentages under the three
types of healthcare management: 45% compact, 30% under contract, and
25% IHS. In addition, the Board predicted that these percentages in the
next six years would further decrease the role of IHS, and they predicted
the following breakdown by percentage: 56% compact, 38% contract, and
6% IHS (NIHB Reporter, 1999~.
Currently, IHS continues to operate approximately 36 hospitals, 63
health centers, 44 health stations, and five school health programs nation-
wide (http: / /info.ihs.gov). With the exception of three large hospitals (the
Alaska Native Medical Center4 in Anchorage, Alaska; the Gallup Indian
Medical Center in Gallup, New Mexico; and the Phoenix Indian Medical
Center in Phoenix, Arizona), other hospitals throughout the country have
4 The Alaska Native Tribal Health Consortium assumed management of the Alaska Na-
tive Medical Center in 1999. The 150-bed hospital serves as the key hospital for the statewide
network of 15 rural native health facilities serving over 200 tribes.
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
535
less than 50 beds and most do not provide surgical or obstetric services.
Other services offered by IHS, albeit on a decreasing scale include public
nursing, a public health sanitation program, environmental health, dental
and optometry services, etc.
Although the passage of the Indian Healthcare Improvement Act permit-
ted some federal support for urban-based Indian health programs, most
of these clinics were previously created as not-for-profit storefront urban
clinics. The clinics survived on donated medical equipment, supplies, and
volunteers until eventually some became more firmly established and
managed to secure funding from a variety of sources (Grossman et al.,
1994~. One funding resource was made possible by the passage of the In-
dian Healthcare Improvement Act. Today, approximately 36 urban Indian
health programs in over 40 locations nationwide are now partially sup-
ported by IHS (IHS, 1998, 1999a). The types of healthcare services pro-
vided by the urban clinics differ from location to location. Some offer only
referral services, while others operate comprehensive outpatient clinics
that may include dental care, mental health services, substance abuse
treatment programs, etc. (Namias, 2000; OTA, 1986~. The current users of
these urban clinics continue to be families or individuals who are on public
assistance or who are either unemployed or are employed in low wage
jobs that do not include health benefits.
Currently, as increasing numbers of American Indian/Alaska Native
health programs come under the management of tribes or native organi-
zations, there is some fear that the decentralization of IHS will eventually
benefit only those tribal communities or organizations able to garner ad-
ditional resources needed to augment the dwindling federal health dol-
lars. One Indian physician noted "that unless there is continuing congres-
sional and political support, the realization of self-determination by tribes
may make it easy for the federal government to terminate its federal re-
sponsibility" (Bergman et al., 1999:601~.
Whether they live in urban or rural communities, healthcare ser-
vices for American Indians and Alaska Natives eligible for Medicare
or Medicaid are another new problem for IHS and for other health pro-
grams intended to serve Indians. In a number of places, IHS, tribal,
and urban programs find themselves in competition with Managed
Care Organizations (MCOs) for American Indian/Alaska Native ben-
eficiaries. While space does not permit lengthy discussion about the
challenges MCOs pose for Indian health programs, it is worth noting
that the growing competition may force changes in the future, such as
capitated fees or other payment arrangements (The Henry J. Kaiser
Family Foundation, 1997:13~.
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UNEQUAL TREATMENT
Healthcare Dollars
Over the decades, the existing healthcare system, whether managed
by IHS, tribes, or urban programs, has had to broaden its base of financial
support in order to respond to the needs of the growing population of
American Indians and Alaska Natives. Financing and paying for patient
care by private or non-IHS or non-tribal facilities or providers is partially
possible with funds allocated under Contract Health Service (CHS).5 De-
spite periodic increased funding, however, CHS dollars are generally de-
pleted by IHS and tribal providers before the end of the fiscal year (The
Henry I. Kaiser Family Foundation, 1997~. Although they provide service
to American Indians/Alaska Natives, most urban programs do not receive
CHS funding.
All three types of providers (IHS, tribal, and urban), however, are
able to tap Medicaid and Medicare. In 2000, Congress enacted a bill allow-
ing these entities to bill directly for services provided to Medicaid and
Medicare beneficiaries after a few demonstration sites documented that it
improved cost recovery and lessened the bureaucracy. In the 1990s, IHS,
tribal, and urban-based programs also won the right to be included with
other Federally Qualified Health Centers, a designation that enabled them
to bill Medicare and Medicaid for actual and not fixed fees (The Henry I.
Kaiser Family Foundation, 1997~.
Access to Medicaid remains a problem for tribal members at many
other places, including the cities. As part of her testimony before the Sen-
ate Select Committee, Barbara Namias, the president of the National
Council of Urban Indian Health, recently recounted the barriers in access-
ing Medicaid faced by people who live in the city. Some of these barriers
include applicants' inability to understand the Medicaid application pro-
cess, lack of required documents such as a driver's license (especially if
the person does not own a vehicle), and/or being denied Medicaid be-
cause the applicant is unable to verify a current address (Namias, 2000:19~.
She noted that many of these applicants remain highly mobile, frequently
in search of affordable housing. Namias also informed the Committee that
securing Medicaid coverage in urban communities does not guarantee
access to medical service, as many providers refuse to accept Medicaid
patients.
The underutilization of Medicaid by American Indians and Alaska
Natives has been documented elsewhere. For example, although not all
states collect or report Medicaid participants by race, statistics from a 1995
report by the Health Care Financing Administration (HCFA) found that
5In Fiscal Year 1997, $133.4 million was allocated for CHS, with 18% of that earmarked for
tribes who contract or compact their healthcare (Schneider and Martinez, 1997:3~.
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
537
American Indians/Alaska Natives were least likely of all racial groups to
access Medicaid only 65% of eligible Indians have Medicaid coverage
compared with 82% for African Americans, 83% for Asians and Pacific
Islanders, and 91% for Hispanics (HCFA, 1995~.
The participation of American Indians/Alaska Natives in Medicare
also has its share of problems. The National Indian Council on Aging
(NICOA) reported that out of 112,588 American Indians/Alaska Native
Medicare beneficiaries in a study they conducted by linking and match-
ing IHS identifiers with Medicare recipients, 85% were racially mis-
classified (NICOA, nd:4~.
The Tribal/Consumer Perspective
Although cautious and concerned about both the possible impacts of
MCOs and the threats to self-governance, most tribal health leaders,
American Indian/Alaska Native health professionals, and the leadership
of the urban and village-based health programs are not pessimistic. A
study reported by the National Indian Health Board in 1999 found that a
majority of the 210 tribes and health organizations they surveyed support
local control of health services and self-determination. In addition, many
articulated a number of health improvements they had been able to ac-
complish under self-governance, including the fact they were able to re-
spond to local needs and to find various resources to expand their health
services to meet those needs (NIHB Reporter, 1999~. Others interpreted
this model of health delivery as essential to improving quality of health
services, in that they are able to re-focus on disease prevention and/or
provide culturally relevant options, such as the inclusion of traditional
tribal healing resources.
Those surveyed also expressed a need for more research on the effects
of tribal health management on Indian health, while others wanted more
political action to ensure future protection of tribal sovereignty (NIHB
Reporter, 1999~. Dwindling funding resources or insufficient funding
were also common problems shared by many of those who participated
in the NIHB survey. Some of the consequences of insufficient funding
included problems such as the inability of the programs to offer competi-
tive salaries and benefits to health professionals (The Henry I. Kaiser Fam-
ily Foundation, 1997; NIHB Reporter, 1999~.
The increased local control also appears to satisfy many consumers of
these health services, although there are few published reports about con-
sumer satisfaction with Indian healthcare other than those available from
focus groups or other anecdotal sources. One preliminary study con-
ducted in the early 1970s found that people with more schooling tended
to express greater satisfaction with the healthcare they received at IHS
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UNEQUAL TREATMENT
facilities than those with less schooling. The latter often experienced more
dissatisfaction, some of it due to language differences, high provider turn-
over, and cultural insensitivity. Some consumers attributed cultural in-
sensitivity to the lack of adequate ongoing or systematic orientation for
the ever-changing cadre of providers (Kekahbah and Wood, 1972~.
In a recent focus group conducted in Albuquerque, New Mexico,
American Indian consumers echoed some of the same issues raised by
consumers in the 1970s, but a number of these participants also voiced a
greater appreciation for the cultural understanding and non-discrimina-
tory healthcare provided them by IHS or tribal health programs. There
was even a strong vote of confidence for IHS providers when one partici-
pant remarked: "I'm happy with IHS. I've got Medicaid for my children.
I'm happy with the doctors that my children see there. The only one that
gives me a hard time is that receptionist" (Grady and Edgar, 2001~. The
Albuquerque group directed much of its dissatisfaction and concern over
cultural insensitivity and discriminatory behavior at healthcare providers
from the private sector rather than at IHS or tribal providers. When dis-
cussing the lack of understanding of traditional tribal healing by provid-
ers outside IHS and/or tribal health programs, one participant added that
she would like these providers to also "understand how traditional medi-
cine can lead to healing [for] the [Indian] patient" (Grady and Edgar,
2001~.
While most IHS providers understand and/or are aware of the tradi-
tional tribal healing practices, most providers in the private sector are less
likely to know about these practices or their value for Indian patients fac-
ing serious health problems. IHS facilities and its leadership in many
communities have always allowed patients and their families either time
or a place (in the clinical setting) to consult with tribal healers or practitio-
ners. The services provided by most of these tribal healers or practitioners
are seen as complementing modern medicine and provides a source of
spiritual help for many patients.
The role of traditional tribal healers is more widely accepted and uti-
lized now, especially as tribal health programs attempt to address health
problems such as diabetes and other conditions that cannot easily be
remedied by modern medicine doe, 1994~. The role of traditional tribal
healing is especially important in health promotion because the concept
of health for most tribes is wellness centered, enforced by social rules of
behavior and taboos intended to help prevent illness or misfortune. Use
of traditional tribal healing and its practitioners, however, was not always
accepted by non-Indian healthcare providers. In fact, some healing prac-
tices were outlawed by the federal government in the late-nineteenth
century at the urging of missionaries who deemed such practices as
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
want to pay because they think Medicaid should pay. Medicaid don't want to
pay because they think PHS [IHS] should pay. Like I said, in the meantime my
little girl has to wait until they make up their mind, and this takes months and
months (Grady and Edgar, 2001:185J.
541
This mother added that she has no choice but to wait, because she has
no other alternative. Both consumers and providers express frustration
over their rationing of medical care. One IHS health program administra-
tor noted: "We are rationing healthcare, and depending on what medical
services are needed, some individuals might not be able to receive the
type of care needed directly in our facilities" (JY 8/31/01~.
Another provider stated that unlike other large federal health pro-
grams, healthcare rationing is necessary because the federal Indian health
appropriation is not based on need. He said that other major federal health
providers of entitlement programs have more budget flexibility and pur-
chasing power. IHS, he notes, does not have similar legislative authority
or other provisions that would give the agency the purchasing power to
negotiate a reasonable price for pharmacy products and to establish set
rates with the private sector for medical services purchased for Indian
patients.
It is not surprising that concerns about limited resources and the ra-
tioning of healthcare loom large. A number of the respondents spoke to
the fact that the IHS funding level is only at 60 percent, a continuing situ-
ation that has forced the agency to limit or dispense with a number of
valuable public health programs in order to sustain primary medical care
services. The 60 percent funding level has also been affected by the in-
creasing number of contracts or compacts that IHS has had to fund. Ac-
cording to some providers, this diminishing role of IHS has had a nega-
tive impact on staff morale and increased the uncertainty about future
employment among the remaining cadre of IHS providers and its other
federal employees.
Most providers also could not talk about rationing healthcare without
referencing the severely underfunded Contract Health Service. While
some reported that they are able to "stretch" their CHS allocation by uti-
lizing the Catastrophic Health Emergency Funds (CHEF),6 this option
does not prevent most of them from exhausting both resources before the
end of each fiscal year. The situation is more urgent, according to provid-
ers and program administrators from Oklahoma, where CHS is the sole
source for 11 of the 35 tribes that do not have clinics and therefore must
rely on CHS dollars to pay for primary and emergency healthcare.
tin Fiscal Year 1997, Congress authorized $12 million for CHEF to supplement CHS.
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542
UNEQUAL TREATMENT
Elsewhere, the CHS dollars are reserved primarily for life-threatening
emergencies that might involve automobile accidents or other major acci-
dents or situations that may result in permanent disability or loss of a
limb. Decisions as to who will receive CHS coverage are handled in a
number of ways, depending on the location. Sometimes the decision is
made administratively, but in other places, a committee of providers
might meet weekly to make these decisions. One IHS health administra-
tor who has responsibility for the CHS program in one IHS area in the
Southwest commented that "one or two major automobile accidents can
wipe out a CHS budget in one month," and added: "CHS is expensive,
and rationing care does not save the agency dollars" (lY 6/22/01~.
Along similar lines, IHS providers in Oklahoma noted that, "Once
CHEF is depleted, the local facility often has to decide if it can absorb a
medical bill for $300,000" (9/4/01~. In some cases, a critical diagnostic
procedure such as an MRI is denied when CHS dollars are low, and the
procedure may be delayed for as long as six months.
According to one of the interviewees, the cost-cutting efforts have also
resulted in the purchase of cheaper treatment alternatives. He notes:
"Some Indian patients with cancer do not get aggressive treatment be-
cause it may be too expensive, but have to settle for less aggressive treat-
ments that may be less likely to be successful" (NC 6/12/01~.
Besides CHEF, tribes who have other resources also report other ways
they try to supplement their CHS dollars. Tribes with gaming or other
business enterprises, for example, encourage their employees to take ad-
vantage of a tribal benefit package that includes health insurance. One
physician who works with some of these tribes, however, reports that the
need for CHS often exceeds these and other financial supplements.
Some tribally managed health programs also report that they are
forced to "stretch" their CHS dollars by limiting eligibility to individuals
who are members of their immediate tribe. Non-tribal members in these
communities have to seek other resources, including care from an urban-
based Indian health program. While the influx of reservation patients to
urban programs has yet to be overwhelming, one urban Indian health
program administrator stated: ". . . they [reservation patients] come with-
out insurance, without Medicaid, or any other resources. We try to help
them get enrolled in Medicaid, but it can be costly for our programs too"
(RF 8/28/01~.
Access to CHS even during times of emergencies is not without prob-
lems for the patients. For example, Indian patients who utilize a non-tribal
or a non-IHS facility during a medical emergency have only 48 hours to
notify their respective IHS facility and/or appropriate tribal health ad-
ministrator to be considered for coverage under the CHS program. Those
who fail to notify the appropriate facility are told they are personally re-
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
543
sponsible for any medical bills associated with the emergency care. More-
over, it is not unusual for many of these non-IHS or non-tribal facilities to
also deny services to Indian patients unless they receive prior authoriza-
tion. Staff at one tribal program reported:
A tribal member was referred from one of our tribal clinics to a non-Indian
facility for diagnostic testing. He was kept waiting for hours when the referral
facility demanded visible, not verbal, verification of coverage. When the referral
facilityfinally got a copy of the written authorization, instead of examining the
patient, the patient was told to schedule an appointment for another time
(HN 9/3/014.
Rationing healthcare and the restriction of CHS resources also affects
non-tribal members, including those married into the tribe. For example,
as one provider notes, if an Alaska Native woman is married to a member
of a tribe in Southwest, the woman is eligible to receive basic health ser-
vices at the local tribal or IHS facility. However, should she need care
aside from pregnancy-related care provided by a non-tribal or non-IHS
provider, "she has to seek CHS coverage from her respective health facil-
ity in Alaska, a situation that requires her to travel back to her home com-
munity to be considered for CHS coverage" (NC 6/12/01~.
In addition to rationing care, other factors also hamper the delivery of
quality healthcare in many communities. A number of the interviewees
reported that increasing numbers of tribal and IHS health programs have
difficulty attracting and keeping good providers. One tribal leader indi-
cated that her community would like to hire an American Indian physi-
cian, but that they have not been able to recruit one. "There are too few of
them," she adds (JY 6/24/01~.
In other areas of the country, access to health facilities remains a key
problem. One provider remarked: "Sixty percent of the Indian people in
our geographic area live [far] away from Indian Health Service and tribal
health program sites.... Transportation is a barrier and if people cannot
access our services, we cannot count them as a part of our user popula-
tion.... Our funding is based on user population" (KA 9/7/01~.
Has Compacting/Contracting Improved Quality of Care?
While some of the problems delineated in the previous section re-
main endemic, some interviewees saw quality healthcare improvement
as tribes have assumed local control of health programs by contracting or
compacting. For example, one IHS provider noted:
My sense is that on balance, contracting and compacting has improved health-
care services. In Alaska, where healthcare has been compacted for the last 4-5
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544
UNEQUAL TREATMENT
years, there are improvements in clinical care. If you walk into the Alaska Na-
tive Medical Center today, you get treated today, whereas under the old system,
sometimes it was a couple of weeks before you could get an appointment (NC
6/12/011.
A director of one of the tribal health programs also reported positive
trends under compacting. She noted that they have been able to build two
new clinics and to increase the range of services offered by the tribal com-
munities. Other tribal health program administrators also report that re-
cent policy changes that allowed for indirect costs have strengthened their
local health program infrastructures.
Another tribal health provider who agrees that quality of care has
improved added that compacting has also helped improve continuity of
care. This individual thought that tribally managed health facilities are
more responsive to local needs. These non-federal facilities, he added, are
also free to keep or let go of employees who are not delivering quality
care. Another provider cautioned that not all tribally managed programs
have been progressive. He thought that how well a tribe managed its
health programs was dependent on the stability of its political or other
infrastructure such as its board of directors. He lamented that in some
communities, after each new election, the health program focus may sud-
denly take a new direction, a direction that may not necessarily result in
positive outcomes.
Another note of caution was voiced by one tribal leader whose com-
munity was studying whether it will contract with IHS. She remarked:
I am a [tribal] council member and don't know how I will vote [on contracting]
until I have more information. We have recently contracted and took over some
of the BIA functions, and it's workingfine. But it is one thing to run out money
to buy sallfor the road and another thing to ration healthcare because there is no
money (IR 6/12/014.
This council member concluded by saying that until she gets further
assurances, she is still skeptical about the federal push to encourage tribes
to take over management of the federal program. She said she feared that
self-determination could be the beginning of terminations or the end of
federal obligations.
Most interviewees agreed that the quality of healthcare is improving
under local control, but most also noted that financial shortfalls plague all
of these programs, forcing them to ration care. Most also agree that the
quality of care received or not received by tribal members is influenced by
7Termination of the federal government's trusteeship.
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
545
racial discrimination or the lack of cultural sensitivity, especially by
providers or employees in the private sector. The next section highlights
some of these observations made by interviewees during the telephone
. .
Interviews.
Does Discrimination Affect Quality of Care for Tribal Members?
The responses to this question were varied, and the examples offered
tended to be anecdotal. For example, one tribal leader said it was her ex-
perience that when she and other tribal leaders lobby for increasing
healthcare dollars for Indian health, some legislators fear that if they sup-
port these efforts, their other constituents will think that Indians are get-
ting something for nothing or that Indians will have a special advantage
over other Americans.
An urban health program director said that discrimination was a ma-
jor problem in his state but is not being addressed, even by state leaders.
He reported that there have been efforts by tribal leaders and others to
have the state legislature examine discriminatory practices such as police
profiling, but to no avail.
Other observations offered by the interviewees tended to reflect expe-
riences or examples that have happened at the local level:
[Tribal leader]: Discrimination is a problem on two levels—one is that a lot of
our people don't have private insurance, except Medicare and Medicaid. Some-
times there are different attitudes by university or private hospital staff towards
these individuals because they have limited English-speaking skills or are timid.
When clerical staffat these facilities do not get our people to answer fast, they
can get nasty, rude, or become patronizing (MB 8/20/014.
[IHS Health Administrator]: There are some biases, stigmatization, and stereo-
typing that goes on, especially in the private sector. There is always an assump-
tion made [by non-Indian providers] that any illness presented by an Indian
patient is alcohol-related or otherforms of substance abuse. Sometimes the ste-
reotyping is further complicated by the fact that some Indian patients lack so-
phistication in dealing with majority culture (lY 6/12/014.
[Tribal leader/consumer]: Private hospitals tend to place Indian patients in char-
ity rooms or cubicles in hospitals, rarely in a room with a window, with a private
bath or nice surroundings. I have accused the hospital of placing our tribal mem-
bers in these 'Indian beds,' but they denied it. I know because my husband was
hospitalized a number of times at this hospital, and he was always placed in one
of these 'Indian beds' (IR 6/24/011.
[Tribal health staff: Providers in the private sector sarcastically refer to our
tribal health insurance program as 'casino insurance' and willfrequently deny
service to those on Medicaid or Medicare because they do not have 'casino
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546
UNEQUAL TREATMENT
insurance' .... Whether an Indian patient gets health service in the private
sector is often dependent on stereotypical views held by these providers
(HN 9/3/011.
One of the staff members on the conference call went on to indicate
that the ability to pay or the possession of a bonafide authorization does
not always translate into quality care for Indian patients. Another tribal
health program staff member elaborated:
Even [our] tribal members with insurance do not receive quality care in the
private sector because of cultural insensitivity and racism. If you look like an
Indian, some facilities will not make youieel welcomed (HN 9/3/01 J.
A majority of those interviewed indicated or provided examples per-
haps indicating that Indian patients are more likely to experience discrimi-
nation by providers or employees working in non-IHS or non-tribal health
facilities. Comments by a number of the interviewees, however, did not
distinguish between outright racial discrimination and situations where
providers might refuse to treat all patients with Medicaid or Medicare
insurance. One tribal leader, for example, defined a situation as discrimi-
natory when a fellow tribal member referred for knee surgery was re-
fused by a specialist because the tribal member was on Medicaid.
Other examples were more specific and linked to racial discrimina-
tion. For example, one provider in Oklahoma reported that compared to
non-Indian clients, Indian clients placed in a nearby psychiatric facility
under Emergency Detention Order either did not receive immediate
evaluation or were not immediately transferred to an appropriate treat-
ment facility. He reports that Indian clients are kept much longer in the
locked facility before they are evaluated or are referred to other treatment
facilities.
Other examples also give glimpses of discriminatory action, at least
from the view of the Indian patients. One longtime urban health program
administrator reported that a considerable number of Indian patients they
refer out to the private sector for specialty care or x-rays may not receive
the service because the patients either do not feel welcomed or are treated
with disrespect. He concluded that some patients are "told directly they
cannot be served, while others are kept waiting for so lone that they net
uncomfortable and just leave" (RF 8/28/01~.
Another IHS provider cited the results of a study that indicated a form
of discrimination in providing treatment. The study examined the kinds
of breast cancer treatments received by Indian women in one region of the
Southwest. The study team found that compared with non-Indian women,
Indian women are more likely to undergo a radical mastectomy rather
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
547
than breast conserving therapy, even for early stage cancer. As a clinician
himself, he speculated that the surgeons might opt for mastectomy be-
cause of a stereotypical view of Indians that Indian women, who often
live miles away from the treatment facilities, may be lost to follow-up
because they likely will not return for the series of radiation or chemo-
therapy treatments. The interviewee continued:
I don't think it's malicious or negative stereotyping, except in the sense that the
surgeons don't quite trust the Indian patient to be as compulsive about follow-
up as their non-Indian patients. They [surgeons] may be doing a disservice to a
number of Indian patients who would be perfectly good at finding their way for
follow-up (NC 6/12/011.
Lack of cultural sensitivity or stereotyping has also been presented as
another form of discrimination or as contributing factors to discrimina-
tion. One provider, for example, notes such insensitivity has led to label-
ing Indian patients as "difficult," especially when an Indian patient may
want to withhold making an important health decision until they've con-
sulted with family or kin. In contrast, noted the interviewee, "decision-
making about the treatment process by healthcare providers tended to be
unilateral rather than bilateral." He also noted that most non-Indian pa-
tients tend to have more knowledge about their health problems than ex-
pected and may, in many instances, already have decided on an expected
course of treatment.
A few of the respondents also mentioned that some Indian patients
also want extra time to consult or to seek the services of their traditional
tribal healers before consenting to a major treatment plan. The services
of a traditional tribal healer, for example, may be sought by the patient
and the patient's family to help ensure a successful outcome of the treat-
ment being proposed by physicians or specialists. Such requests are
familiar and frequently honored by providers in IHS or tribal or urban
based health programs, but are not familiar to providers in the private
sector. Providers and administrators of the urban programs, however,
find it difficult to provide patients in the cities with access to traditional
tribal healers due to distance and differing intertribal needs for this
service.
Some of those interviewed also described ways they have attempted
to address discrimination. One IHS director of a consortium of tribal
health programs in the eastern United States reported that they constantly
try to educate agencies or entities that deny services to Indian patients to
teach them that as citizens of their respective states, Indians are eligible
for state, county, or local health resources. He admitted, however, that the
educational efforts are difficult because his organization has to work with
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548
UNEQUAL TREATMENT
14 different eastern states and across four different federal regions (MT 8/
31/01~.
Other tribal health program administrators said they attempt to
lessen the blow of discriminatory practices by having Community
Health Representatives (paraprofessionals) escort patients to non-tribal
or non-IHS facilities. The escorts are asked to help with translation or to
serve as patient advocates. In another region of the country, communi-
ties were able to vote in a tribal member to the local non-Indian hospital
board, and once on the hospital board, the representative (despite strong
objection by fellow board members) was able to convince the hospital to
hire tribal persons to help coordinate care for Indian patients referred to
that hospital.
What Is Being Done to Address Health Disparity?
The bottom line about health services for American Indians/Alaska
Natives, according to one provider, is that most of the health programs do
not have adequate funding or resources to reduce health disparities. One
noted exception mentioned by a number of individuals interviewed has
been the recent special congressional five-year diabetes prevention initia-
tive that has funded a number of communities to initiate diabetes preven-
tion programs.
IHS providers also recount a few longstanding efforts to address
health disparities, such as their ongoing aggressive immunization pro-
grams, efforts to improve sanitation and water supply for tribal commu-
nities, improvement in standards of care for clinical patients through chart
audits, and increased screening for a number of preventable mortalities,
such as diabetes, cancer, heart disease, etc.
Tribally managed programs that are able to tap into other resources
also mentioned a number of programs that they have initiated, such as
wellness programs, adolescent treatment programs, substance abuse treat-
ment, integration of traditional tribal healing practices, and disease pre-
vention programs.
In general, most agreed that closing the gap on health disparities for
this population would require a national and federal recommitment, es-
pecially in the form of increased federal funding that would allow pa-
tients to have access to specialty care. There was also consensus that there
should be renewed interest and resources for disease prevention, devel-
opment of culturally relevant interventions (such as inclusion of tradi-
tional tribal health resources), more resources to conduct meaningful
health research, and diversifying avenues that will allow more American
Indians/Alaska Natives to enter health professions.
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RATIONING OF HEALTHCARE AND HEALTH DISPARITY
Summary
549
Unlike other racial or ethnic minority groups, the federal government
(through IHS) is responsible for delivery of health services to federally
recognized American Indians and Alaska Natives through IHS, tribal, and
urban-based Indian programs. For several decades, the goal of the federal
government has been to raise the health of this population to the highest
level in order to lessen the gap of health disparities. The road taken by
tribes and the IHS to accomplish this goal continues to be fraught with
difficulties and detours.
The difficulties in closing the gap of health disparities continues to be
underscored by a number of indicators, including mortality statistics for
specific diseases that significantly exceed those in the majority culture.
Numerous factors have been identified as contributing to these dispari-
ties, including, but not limited to, poverty, access to healthcare, years of
neglect, diminishing resources for disease prevention, longstanding so-
cial and cultural disruptions, and a widening gap in healthcare spending
that forces rationing of healthcare. The gap in healthcare spending is es-
pecially significant when the annual per capita spending for Indian health
is less than half that per capita for the nation $1,430 compared to $3,766,
respectively.
The inadequate funding of CHS and CHEF contributes to the most
severe form of healthcare rationing. This funding gap results in delaying
treatment or diagnosis, compelling patients to accept cheaper and less
effective treatment interventions, to go without treatment, and/or to be
denied services. Moreover, some patients are unable to receive timely care
due to jurisdictional and bureaucratic disputes over which agency is the
first party payer.
Racial discrimination and stereotyping of Indian patients, especially
by providers in the private sector, is commonplace. Its consequences have
left patients without care, with inadequate care, or in some instances, with
inappropriate care, such as radical mastectomy for early stage cancers.
Lack of adequate funding ripples into all aspects of the healthcare
delivery systems, which has affected the ability of the Indian health pro-
grams to recruit and hire staff, to commit to long-range health planning,
to target resources for prevention and research, and to ensure culturally
appropriate healthcare. Tribal and urban-based Indian health programs
have developed strategies to off-set the ever growing financial hardships,
but they, along with IHS, are now facing other new challenges, such as
managed care.
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550
UNEQUAL TREATMENT
REFERENCES
Albuquerque Journal. (2001~. Persistent Disparities Put Patients at Risk. Albuquerque, NM.
August 20.
American Indian Lawyer Training Program (AILTP). (1988~. Indian Tribes as Sovereign Gov-
ernments. Oakland, CA: American Indian Lawyer Training Program.
Bergman, Abraham B., Grossman, David C., Erdrich, Angela M., Todd, John G. and Ralph
Forquera. (1999~. A Political History of the Indian Health Service. The Milbank Quar-
terly. 77~4~:571-604.
Braden JJ and K Beauregard. (1993~. Health Status and Access to Care of Rural and Urban Popu-
lations: National Medical Expenditure Survey Research Findings 18. Rockville, MD: Agency
for Health Care Policy Research.
FCNL Indian Report. (2000~. Washington, DC: Friends Committee on National Legislation.
I-65. Spring.
Grady, Meredith and Tim Edgar. (2001~. Racial Disparities in Health Care: Highlights from Fo-
cus Group Findings. Washington, DC: Westat. June.
Grossman, David C., Krieger, James W., Sugarman, Jonathan R. and Ralph Forquera. (1994~.
Health Status of Urban American Indians and Alaska Natives. JAMA. 271~11~845-850.
Health Care Financing Administration (HCFA). (1995~. 1995 Data Compendium. U.S. DHHS.
HCFA. Medicaid Bureau. Publication Number 03364. March.
Indian Health Service (IHS). (1998, 1999a). Trends in Indian Health. Rockville, MD: U.S.
DHHS. Indian Health Service.
Indian Health Service (IHS). (1998, l999b). Regional Differences in Indian Health. Rockville,
MD: U.S. DHHS: Indian Health Service. http://info.ihs.gov. Year 2001 profile. Feb. 8,
2001.
Joe, Jennie R. (1994~. Health. In The Native North American Almanac. Duane Champage, ed.
Detroit, MI: Gale Research Inc.
The Henry J. Kaiser Family Foundation. (1997~. The Implications of Changes in the Health Care
Environment for Native American Health Care. Washington, DC: The Henry J. Kaiser Fam-
ily Foundation. August.
Kekahbah, Janice and Rosemary Wood. (1972~. A Study of the Patterns of Relating Between the
Delivers of Health Care Services and The Consumers of Health Care Services in Indian Com-
munity. Unpublished report prepared for Indian Health Service.
Kunitz, Stephen J. (1983~. Disease Change and the Role of Medicine: The Navajo Experience. Ber-
keley: University of California Press.
Kunitz, Stephen J. (1996~. The History and Politics of US Health Care Policy for American
Indians and Alaska Natives. American Journal of Public Health. 86:1464-1473.
McNickle, D'Arcy. (1973~. Native American Tribalism: Indian Survivals and Renewals. New York:
Oxford University Press.
Meriam, Lewis. (1928~. The Problem of Indian Administration; A Report of a Survey Made at the
Request of the Honorable Hubert Work, Secretary of Interior. Baltimore, MD: Johns Hopkins
Press (published for the Brookings Institution). February 21.
Namias, Barbara. (2000~. The Urban Indian Health Care Story: The Needfor Services. Testimony
of Barbara Namias, President of the National Council of Urban Indian Health Before
the Senate Committee on Indian Affairs. Washington, DC: July 26.
NICOA Monograph Series. (nd). Indians No More: Inconsistent Classification of American Indi-
ans/Alaska Natives in Medicare. Albuquerque, NM: National Indian Council on Aging
(NICOA).
National Indian Health Board Reporter. (1999~. Tribes Believe Health Improves with Tribal
Control, NIHB Study Show. Denver, CO: The National Indian Health Board. 8~2~.
Spring/Summer.
OCR for page 551
RATIONING OF HEALTHCARE AND HEALTH DISPARITY
551
Office of Technology Assessment (OTA). (1986). Indian Health Care. Washington, DC: U.S.
Government Printing Office. OTA-H-290. April.
Rhoades, Everett R., D'Angelo, Anthony J. and WE Hurlburt. (1987~. The Indian Health
Service Record of Achievement. Public Health Reports. 102:356-360.
Schneider, Andy and JoAnn Martinez. (1997~. Native Americans and Medicaid: Coverage and
Financing Issues. Kaiser Family Foundation Policy Brief. Washington, DC: The Henry J.
Kaiser Family Foundation. December.
Stern, E. Wagner and Allen F. Stern. (1945~. The Effects of Smallpox on the Destiny of
Amerindians. Boston, MA: Bruce Humphries, Inc.
Trennert, Robert A. (1998~. White Man's Medicine: Government Doctors and the Navajo, 1861-
1955. Albuquerque: University of New Mexico Press.
Trujillo, Michael H. (2000~. IHS: One Prescription for Eliminating Health Disparity Legislation.
Unpublished Manuscript. Rockville, MD: US Indian Health Service.
Representative terms from entire chapter:
health programs
