URBAN INDIAN HEALTH COMMISSION - INVISIBLE TRIBES: URBAN INDIANS AND THEIR HEALTH IN A CHANGING WORLD
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Urban Indian Health Commision 1
Urban Indian Invisible Tribes: Urban Indians and
Health Commission Their Health in a Changing World
A Report Issued by the Urban Indian Health Commission
With Support from the Robert Wood Johnson Foundation
Acknowledgments
This report was produced by the Urban Indian The Commission would like to thank the Robert
Health Commission, a select group of leaders Wood Johnson Foundation for the opportunity to
convened by the Robert Wood Johnson Foundation produce this report and the Foundation’s strategic
and the Seattle Indian Health Board’s Urban Indian guidance along the way.
Health Institute to examine health care issues
The Commission would also like to thank the
facing urban American Indians and Alaska Natives.
many urban Indian health organizations, staff
and community members who generously shared
Commissioners
AN HEALTH CO their stories, knowledge and experiences with the
I
•M
ichael Bird, M.P.H., M.S.W.
M
Commission and who provide daily inspiration for
ND
(Santa Domingo/San Juan Pueblo) the urban American Indian and Alaska
•L
inda Burhansstipanov, Dr.P.H., M.S.P.H., Native community.
MI
C.H.E.S. (Cherokee Nation of Oklahoma)
I
Much gratitude is also expressed to Kelly Moore,
AN
• Jarrett Clinton, M.D., M.P.H.
SSI
Charlton Wilson, Donnie Lee, Dawn Giberson
• J effrey A. Henderson, M.D., M.P.H. and Sara Rosenbaum for their content expertise,
URB
(Cheyenne River Sioux)
ON
review and guidance for the Urban Indian Health
• Jennie R. Joe, Ph.D., M.P.H., M.A. (Navajo) Commission report.
• Theresa Maresca, M.D. (Mohawk) Finally, the development of the Urban Indian
• Clifford E. Trafzer, Ph.D. (Wyandot) Health Commission report was the result of many
•M
ichael H. Trujillo, M.D., M.S., M.P.H. joint efforts. The Commission would like to thank
(Laguna Pueblo) Charlene Worley for her invaluable contribution to
• Eve Slater, M.D. the depression section of the report, Tom Byers and
Rhonda Peterson of Cedar River Group for their
• Martin Waukazoo (Rosebud Sioux)
technical writing contributions to the diabetes and
•C
harles B. Wilson, M.D., M.S.H.A., Sc.D.
cardiovascular disease sections of the report, and
(Cherokee)
Tom Mirga for his technical writing and editorial
Senior Advisors expertise. The Commission would also like to thank
Janet Goss, Paul Quirk, Jessica Sapalio and Melanie
• Philip R. Lee, M.D., M.S. Mayhew of GMMB for their ongoing editorial and
• Andy Schneider, J.D. publication assistance, and Roger Fernandes for his
assistance with the Commission logo.
Robert Wood Johnson Foundation Advisors
N HEALTH CO
This logo was designed by Roger
DIA
• Debra Joy Pérez, Ph.D.
MM
URBAN IN
Fernandez for the Urban Indian Health
ISSION
•M
ichael W. Painter, J.D., M.D. Commission. The front structure is a
(Cherokee Nation of Oklahoma) Northwest Coast plank house and it symbolizes
Urban Indian Health Institute Staff the home, which is what the Urban Indian Health
Organizations are to many urban Indians. The
•R
alph Forquera, M.P.H. (Juaneño Band of buildings and the teepee in the background remind
Mission Indians, Acjachmen Nation) us of the changing landscape urban Indians face in
• Maile Taualii, M.P.H. (Native Hawaiian) today’s world.
• J essica Folkman, M.P.H. (Cherokee Nation
of Oklahoma)
T he term “tribe” is often associated with American Indians today. We chose to use the term tribe in the title of this report not to
imply that urban Indians are a tribe, but that Indians living in cities are forming communities to help them maintain their native
customs and cultures. The pan-Indian nature of urban Indian communities speaks strongly to the vitality of American Indian tribal
communities today, and the desires on the part of Indian people everywhere to assure that their cultures are preserved.
Table of Contents Executive Summary 1 I. A Population in Crisis 5 II. Urban Indian Access to Health Care 7 III. Challenges in Data Collection 10 IV. Depression Among Urban Indians 11 V. Type 2 Diabetes Among Urban Indians 15 VI. Cardiovascular Disease Among Urban Indians 18 VII. Models of Success 21 VIII. Conclusion 23 Appendix A: A History of Broken Promises 24 Appendix B: Acronym List 28 Appendix C: Tables 29 Appendix D: Commission Information 34 Works Cited 39
Executive Summary 1
EXECUTIVE SUMMARY
During the last 30 years, more than 1 million qualify for federal Indian health aid provided by the
American Indians and Alaska Natives have moved to IHS or tribally run hospitals and clinics. Legislation
metropolitan areas. These original inhabitants of the enacted and treaties signed during the last century
United States have left reservations and other areas, guaranteed health care for American Indians and
some by choice and some by force. This change in Alaska Natives, but for the most part, recent policies
lifestyle has left many in dire circumstances and have stripped many of them of their rights to health
poor health. To many in the United States, this care when they move to cities. Today’s urban Indians
population is invisible, leaving an important problem are mostly the products of failed federal government
unnoticed: the health of nearly 67 percent of the policies that facilitated the urbanization of Indians,
nation’s 4.1 million self-identified American Indians and the lack of sufficient aid to assure success with
and Alaska Natives. this transition has placed them at greater health
risk. Competition for scarce resources further limits
This report focuses on and highlights this segment
financial help to address the health problems faced
of our nation’s population that many do not
by urban Indians.
understand very well. Aside from the valiant,
heroic efforts of our nation’s urban Indian health Decades ago, tribes exchanged their land and its
care programs, American health care and America’s vast resources for federal promises of a better life
leaders largely ignore these people. We know and better health, but the government has not
from the RAND national report card on quality delivered on its promises. As a result, the health of
that overall the quality of American health care urban Indians has suffered, especially compared to
remains mediocre for everyone. However, we also other Americans’ health.
know that racial and ethnic minorities, including
Today, there is no national, uniform policy regarding
American Indians and Alaska Natives, are at an
urban Indian health, and current federal executive
even greater risk of receiving mediocre or even
policy aims to eliminate funding for urban Indian
poor quality care. Other than the few urban Indian
health within the Indian Health Service.
health care programs sprinkled across the country,
large-scale efforts to reduce these disparities in
care often overlook the urban Indian population.
The current urban Indian programs cannot do this
The Findings
job alone. So, although the federal government and Urban Indians face several challenges when trying to
various organizations have attempted to address access quality health care. According to one study,
this problem, there remains much to be done—and they face time constraints, transportation issues,
urgently—as urban Indians struggle to get the health distrust of government programs and the cost of
care they deserve. traveling to receive government-provided health
care. (Kaiser Family Foundation, 2004) Additionally,
many of those seeking treatment at urban clinics are
Background poor and uninsured, and Medicaid covers only part
of their care.
Today, nearly seven out of every 10 American
Indians and Alaska Natives—2.8 million—live in A large proportion of urban Indians is living in or
or near cities, and that number is growing. Some near poverty and thus faces multiple barriers to
urban Indians are members of the 562 federally obtaining care. Half of all non-elderly American
recognized tribes and are thus entitled to certain Indians and Alaska Natives are poor or near-poor,
federal health care benefits, with the bulk of these with family incomes below 200 percent of the
services provided only on reservations, making federal poverty level. More than 25 percent of
access difficult for those in cities. Others are American Indians and Alaska Natives are eligible
members of the 109 tribes that the government for Medicaid, yet only 17 percent report that
“terminated” in the 1950s. Without this federally they are covered by it or another public program.
recognized status, members of these tribes do not American Indians and Alaska Natives do not apply2 Invisible Tribes: Urban Indians and Their Health in a Changing World
for Medicaid for a variety of reasons, many of these diseases are also shared—at above-average
which could be addressed and resolved through rates—by other diseases and afflictions suffered by
greater awareness and an increased focus on this American Indians and Alaska Natives.
population’s needs.
Urban Indians are much more likely to seek health
care from urban Indian health organizations (UIHOs)
Depression
than from non-Indian clinics. However, with only Researchers have collected little data on depression
1 percent of the Indian health budget allocated among urban Indians, although some studies have
to urban programs and with this 1 percent under indicated that up to 30 percent of all American
threat of elimination, these Indian-operated clinics Indian and Alaska Native adults suffer from
must struggle to obtain and maintain the funding, depression (SAMSHA, 1999) and there is a strong
resources and infrastructure needed to serve the reason to believe the proportion may be even
growing urban Indian population. The vast majority greater among those living in cities. Few urban
of American Indians and Alaska Natives living in Indian health organizations have sufficient funding
cities are ineligible for or unable to utilize health to create useful and sustainable mental health
services offered through the Indian Health Service programs. Few can afford to employ a mental health
or tribes, so the urban Indian health organizations professional or manage the cost of additional space
are a key lifeline for this group. to treat patients in private. Many of their clients lack
health insurance, and those who are insured might
An additional challenge in addressing the needs of
have policies imposing strict limits on mental
this population is the lack of data. Although federal,
health coverage.
state and local public health institutions collect
some urban Indian public health data, these data National aggregate data, however, can offer an idea
are rarely disaggregated, separately analyzed or of the magnitude and distribution of depression
reported. Existing data are replete with problems, among urban Indians. The data show that at the
including racial misclassification on official national level, American Indians and Alaska Natives
documents, inattentiveness on the part of public suffer disproportionately from depression and
officials to collect data on urban Indians, small cell substance abuse and, with the exception of private
size in official studies that limits the use of officially psychiatric hospitals, are overly represented in
collected data, inadequate numbers to allow for in-patient care relative to Caucasians. (OMH Web
scientifically sound analysis, and a general lack of site, 2007) More than one-third of Indian Health
standardization and attention to data collection on Services patient-care contacts in 2006 were related
urban Indians as a whole. Since many decisions to mental health, alcoholism or substance abuse.
about public support are based on data, those with
In treating these patients, it is important for health
little or no data can easily be overlooked.
care professionals to understand this population’s
Although public and private health institutions culture and history. With few American Indian or
continue to struggle to collect data on the health Alaska Native health professionals, and with many
care of American Indians and Alaska Natives, primary caregivers lacking sufficient mental health
profiles of specific diseases that plague this training, urban Indians are not, in most cases,
population have emerged. Depression, diabetes and receiving adequate mental health care. To effectively
cardiovascular disease deserve special attention due treat urban Indians, health care professionals must
to their alarming presence and frequent coexistence understand, accept and work with urban Indians’
in this population. unique cultural and historical perspectives.
These three diseases are closely linked as risk
factors and co-morbidities in the American Indian
and Alaska Native population. It is common for
Diabetes
an urban Indian to suffer from more than one of Compared to the general U.S. population, American
these diseases, which interact with, amplify and Indians and Alaska Natives have a higher prevalence
perpetuate one another. Many of the underlying of diabetes, a greater mortality rate from diabetes
causes, markers and barriers to treatment of and an earlier age of diabetes onset.Executive Summary 3
An estimated 15 percent of American Indians and and older than cancer, diabetes and unintentional
Alaska Natives age 20 years or older who receive injuries—their second, third and fourth leading
care from the Indian Health Service have type 2 causes of death—combined. (IHS, Trends in Indian
diabetes. (CDC, 2005) This prevalence exceeds Health, 2000-2001) Diabetes raises the risk of
that of the nation as a whole (9.6 percent), as well stroke. The American Indian and Alaska Native
as that of many other racial groups. A study of two stroke-related death rate due to diabetes is more
urban Indian health clinics found that diabetes was than triple that of the general population. (Galloway,
among the top five reasons for health care visits. 2002) Perhaps even more troubling, obesity, physical
(Taylor, 1988) Diabetes kills roughly four times as inactivity and high blood pressure—all risk factors for
many American Indians and Alaska Natives as it cardiovascular disease—are growing problems among
does members of the U.S. population at large. (IHS, American Indian and Alaska Native youth.
2000) In general, people are more likely to develop
Studies show that contrary to trends among
type 2 diabetes and die from its complications as
other U.S. racial and ethnic groups, cardiovascular
they grow older (CDC, 2005), a pattern that is even
disease rates continued to rise among American
more pronounced among American Indians and
Indians. (Howard et al., 1999) Up to 25 percent
Alaska Natives. (IHS, 2000)
of American Indian men ages 45 to 74 have signs
Between 1990 and 1999, diabetes was the fifth of heart disease. (Ali et al., 2001) New cases
leading cause of death for American Indians and of coronary heart disease (chest pain and/or
Alaska Natives living in counties served by urban heart attack) among American Indians are nearly
Indian health organizations. Among this population, twice that of the general population. (Howard, et
the diabetes death rate was 32 per 100,000 and al., 1999)
significantly higher than that of the general urban
Studies show that coronary heart disease, high blood
population. In addition, between 1990 and 1999
pressure and stroke are disproportionately prevalent
diabetes-related mortality increased at a faster rate
among American Indians and Alaska Natives.
among American Indians and Alaska Natives than
(AHA Statistics Committee and Stroke Statistics
among the general urban population. (Urban Indian
Subcommittee, 2007) They have substantially higher
Health Institute, 2004)
rates of coronary heart disease than whites and many
A special initiative was started in 1999 to other racial and ethnic groups. (Galloway, 2005)
address diabetes among American Indians.
Heart disease, like diabetes, is an expensive and
Through improvements in education, prevention
time-consuming condition to treat. Often, heart
and treatment, the initiative has not only raised
disease accompanies diabetes, making treatment
awareness, but it has likely prevented deaths and
even more complicated and expensive. For urban
disabilities among patients. Urban Indian health
Indians, access to both diagnostic tests and
organizations are a part of this initiative and
specialized cardiac care cannot be assured due to
have been successful in reaching urban Indians.
poverty, lack of insurance and the limitations of urban
Preliminary data for the period 2000 to 2005 show
Indian health organization services. The current
significant improvements in most urban areas. This
UIHO network is an incomplete system offering only
initiative proves the value of targeted interventions
preventative and primary health care, which limits
and the ability of community-based organizations
the ability of urban Indians to receive adequate and
to better serve hard-to-reach populations like urban
timely treatment of cardiovascular problems.
American Indians and Alaska Natives. But with
many urban Indians already afflicted with diabetes,
more steps must be taken.
Conclusions and Recommendations
These findings illustrate the depths of the urban
Cardiovascular Disease Indian health crisis. Decades of neglect have placed
urban Indians at greater risk of unnecessary death
Cardiovascular disease is the leading cause of death
and disability. Although the United States continues
among American Indians and Alaska Natives. It kills
to work to address racial and ethnic disparities in
more American Indians and Alaska Natives age 45
health care, American Indians and Alaska Natives4 Invisible Tribes: Urban Indians and Their Health in a Changing World
living in this country’s cities have been mostly Indians and Alaska Natives, stratifies those
invisible in these strategies. Special attention must measures by American Indian and Alaska Native
be paid to make sure they are included in future race and ethnicity, and reports those stratified
initiatives. Without informed dialogue and targeted measures publicly; engage municipal, local,
action, the health of urban Indians will continue state and federal health officials to ensure that
to decline. To that end, the Urban Indian Health data on the urban Indian population are indeed
Commission offers the following recommendations. available; examine new approaches to small
population research that would meet scientific
•D
emographics: Although federal Indian
rigor and the needs of urban American Indians
policy favors resources for Indian tribes and
and Alaska Native people; support increased
those living on Indian reservations, shifts in
research activity by and for the urban American
populations and findings from health disparities
Indian and Alaska Native people; and consider
research confirm that public and private sector
the development of urban American Indian and
efforts to improve health care quality and
Alaska Native Centers of Excellence.
reduce disparities must assist and recognize
Indians living cities. •C
ulturally Competent Quality Care: Expand
the number of Native health professionals by
•B
est Practices to Improve the Quality
working with local colleges, universities and
of Care and Reduce Disparities: Build
trade institutions to support Native students;
upon and implement interventions for
encourage UIHOs to serve as training sites
improving urban Indian health care; expand
and facilitate collaborative relationships to
the information technology capacity of Urban
support this educational role; and support the
Indian Health Organizations (UIHOs) and
integration of traditional medicine in health
others who provide care for urban American
care delivery.
Indians to help improve clinical performance
and serve as a platform for data collection; •A
ccess to Quality Care and Health Services:
establish and support initiatives like the Provide technical assistance in building
Special Diabetes Program for Indians for partnerships with local health providers for
other conditions, such as cardiovascular greater health service access; improve access
disease, depression and other major health to public and private health insurance to
problems; help clinical systems employ tools assure proper uses of health care when needed;
like the Chronic Care Model, where applicable; educate health officials and policy-makers
and implement culturally specific best practice about the effects of eligibility requirements
prevention interventions, such as the use on insurance enrollment; and help reduce
of traditional healers, talking circles and misunderstandings and perceived barriers for
community events, where applicable. urban Indians.
•D
ata for Performance Measurement, Public •P
olicy and Funding: Support the Urban Indian
Reporting, Quality Improvement and Research: Health Program through the Indian Health
Ensure that urban American Indians and Alaska Service; include urban American Indians and
Natives are included in all data collection Alaska Natives in national programs dealing with
efforts to improve health care quality such as health disparities and minority health initiatives;
regional quality improvement collaboratives, and encourage efforts to enhance public and
regional and national private health plan private partnerships that can help urban Indians
initiatives and others so that this work measures build health access and service capacity.
the quality of care provided to urban AmericanA Population in Crisis 5
I. A Population in Crisis
Many Americans assume that nearly all American liver disease and cirrhosis, diabetes, and accidents.
Indians and Alaska Natives live on vast rural The findings of this study were later republished
reservations, where federal programs see to all their in 2006 in a peer-reviewed article in the American
health care and basic needs. This could not be Journal of Public Health. (Findings from this study
further from the truth. are presented in Appendix A, Tables 1 through 3.)
(Castor et al. 2006)
Today, nearly seven out of 10 American Indians and
Alaska Natives live in or near cities, and that number American Indians and Alaska Natives living in
is growing. According to the U.S. Census Bureau, cities face poverty, unemployment, disability and
more than 1 million American Indians and Alaska inadequate education at rates far above those of
Natives have moved to metropolitan areas during other Americans. These and other risk factors have
the past three decades. They now constitute roughly contributed to a health crisis in this population
67 percent of the nation’s 4.1 million self-identified despite an ongoing effort to eliminate health care
American Indians and Alaska Natives. disparities across all races and ethnicities.
Many live in extreme poverty, poor health and Consider these facts:
cultural isolation. Many live far from federally
•T
he infant mortality rate among urban American
mandated reservation-based health services, which
Indians and Alaska Natives is 33 percent higher
are ill-equipped to increase the number of patients
than that of the general population.
they treat. In one sense, these 2.8 million urban
Indians are America’s largest and most vulnerable •T
heir death rate due to accidents is 38 percent
tribe. Yet to many in their government and to many higher.
of their Indian and non-Indian fellow citizens, urban
•T
heir death rate due to diabetes is 54 percent
Indians are invisible.
higher.
Reliable health statistics on urban Indians are scarce
•T
heir death rate due to chronic liver disease and
because this demographic has been studied so little
cirrhosis is 126 percent higher.
and its members are often misclassified on vital
records as belonging to other races or ethnicities. •T
heir rate of alcohol-related deaths is 178
But what we do know about urban Indians’ health is percent higher.
enough to warrant immediate action.
•S
ome studies indicate that up to 30 percent of
The United States has a unique relationship with all American Indian and Alaska Native adults
American Indians that places responsibility for their suffer from depression, and there is strong
care on the government and the American people. reason to believe the proportion is even greater
Simply stated, tribes exchanged their land and its among those living in cities.
vast resources for federal promises of a better life
•C
ardiovascular disease (CVD) was virtually
and better health. Those promises are the main
unheard of among American Indians and Alaska
reason why we all live on what was once Indian land.
Natives as recently as 40 years ago. Now it is
Yet, these promises have not been fully kept. their leading cause of death.
In 2004, the first comprehensive national study on •D
iabetes can double to quadruple an
urban Indian health revealed a community in crisis. American Indian or Alaska Native adult’s risk
The study found that Urban Indians had multiple of developing CVD.
health risks, and when compared to the general
Urban Indians have less access to health care than
population, urban Indians were found to have higher
other Americans. Often, their living conditions are
death rates due to alcohol-related causes, chronic
literally sickening. Persistent bias against them and6 Invisible Tribes: Urban Indians and Their Health in a Changing World
their mistrust of government keep many from getting The Commission is comprised of 11 members and
the health care they need. Large-scale efforts to two advisors from the fields of education, public
reduce racial and ethnic disparities in health care policy, Indian affairs, medicine, research, business,
largely overlook them, concentrating instead on far industry, government, and the community and
larger underserved communities. nonprofit sectors.
Meanwhile, political disagreements over national This report focuses on the challenges to improving
Indian policy have deprived urban and rural urban Indian health and offers a detailed
Indians alike of the funds they need to improve examination of urban Indian health today based
their health. The resulting lack of progress has led on the best data available, with a special focus on
some in Washington to undervalue urban Indian three large, growing and often intertwined diseases:
health programs and regard them as ones that do depression, diabetes and cardiovascular disease.
not deserve further funding. Taxpayer dollars, they The depression section sets the stage by exploring
say, would be better spent on health programs that recurrent themes, such as the woeful state of urban
benefit all Americans. Indian health data, the frequent disconnect between
native and Western philosophies of wellness and
To draw the country’s attention to the unique
healing, the lack of cultural competency in the
needs of urban Indians, the Robert Wood Johnson
medical workforce, and, perhaps most pointedly, the
Foundation funded the creation of the Urban
insidious effects that racial discrimination has had
Indian Health Commission. Through this report, the
on Indians for generations. The report concludes
Commission seeks to raise the visibility of the plight
with accounts of model programs that are making
of urban Indians. The Commission hopes to identify
high-quality health care more accessible to the
and promote practices that can elevate urban
growing number of American Indians and Alaska
Indians to health care parity with national averages.
Natives living in cities.Urban Indian Access to Health Care 7
II. Urban Indian Access to Health Care
Under Title V of IHCIA, the Indian Health With federal funding inadequate and uncertain,
Service contracts with private Indian-controlled urban Indian health organizations have begun
nonprofit corporations to run urban Indian health turning to philanthropies and other non-federal
organizations (UIHOs). Today, there are 34 urban funding sources. For example, the N.A.T.I.V.E.
Indian health organizations. In fiscal year 2006, Project in Spokane, Wash., recently raised $3.9
Congress spent $32.7 million on the program, or million from state, community and charitable
about 1 percent of IHS’s $3 billion annual budget. sources to expand its facilities. Such victories
The 34 organizations served roughly 100,000 are rare, however.
Indian people in 2005.
Even when urban Indian health organizations
Many urban Indian health organizations are manage to secure grants, they often come with
the glue that holds their communities together. strings attached. For example, grantmakers might
Indians have a well-founded distrust of government insist on research-based treatments or a strict focus
programs and are far more likely to seek health on patient outcomes. Reliance on evidence-based
care from Indian-operated clinics than from others. treatments is virtually impossible for an urban
These organizations are more sensitive to Indian Indian population that has rarely been the subject of
cultural needs and have a better understanding a randomized trial. Grant conditions such as these
of historic discrimination experiences that can are well-meaning and might make sense for other
thwart appropriate health care. Urban Indian health populations, but in the urban Indian context, they
organizations also create opportunities for urban erect barriers to funding and the care it finances. In
Indians to practice their traditions and explore their addition, non-IHS-recognized urban Indian programs
cultures, which benefit their health profoundly. may provide the services due to the dysfunction that
These organizations also help clients obtain and fluctuating federal funding has caused to the urban
keep government-sponsored health coverage; guide Indian program.
them through social service bureaucracies; and
Inadequate funding is hardly the only barrier to
connect them to jobs, educational opportunities
improving health care for urban Indians.
and support services.
For example, surveys and anecdotes reveal that
However, today many U.S. cities with sizeable
urban Indians are a very itinerant population. Many
American Indian and Alaska Native populations lack
migrate between reservations and cities, within and
access to an urban Indian health organization. Many
among cities, and even among states. Urban Indian
urban Indians live long distances from reservation-
health organization staff members say it is common
based IHS or tribal health services. California, for
example, has more American Indians and Alaska
Natives than any other state, and just 10 percent
have access to IHS clinical services. (Seals et al.,
2006) There, as in other states, urban Indians who
must move to reservations for health care might
have to wait months to reestablish residency, and
then might spend even more time on a waiting list
before getting treatment. Many become sicker and
some even die before reaching the top of the list.
Even among the urban Indian health organizations,
not all are able to provide the full spectrum of
health services needed by urban Indians. In
addition, none are connected to a hospital and few
are connected to specialty care services, both of
which are needed by the urban Indian community. Grand opening of the new facility of the N.A.T.I.V.E. Project in Spokane, Wash.8 Invisible Tribes: Urban Indians and Their Health in a Changing World
for a client’s record to show multiple addresses in Even Indians living on reservations find it
a given year. Officials at the North American Indian increasingly difficult to obtain proper health care.
Center of Boston report that they have “regular” As a discretionary domestic program, IHS must
clients from as far compete for federal dollars with a multitude of
away as Arizona, other programs and interests. Just under half of all
California and New uninsured American Indians and Alaska Natives
Mexico. Half of the identify IHS as a source of coverage and care.
service recipients IHS is not now, nor has it ever been, health
during the early insurance, and yet urban Indians are told that they
stages of Denver’s should identify IHS as insurance on health care
Native American applications. Many cannot access it because of time
Cancer Research and the cost of traveling to receive it. As a result,
Native Sister many forego health care. (Kaiser Family Foundation
Initiative moved to (KFF), 2004)
new homes every
Financial pressures are also forcing tribal leaders
18 months.
to make tough decisions about limiting access
This high degree to tribally managed health care. Their priority is
of movement to provide care for local tribal members living on
South Dakota Urban Indian Health Center staff in obviously makes reservations. Therefore, those living in urban areas
front of the Aberdeen Area Indian Health Service it challenging to are often restricted from accessing tribally managed
tele-digital mammography van. The van provides treat urban Indians care, and are mainly channeled to the already
an opportunity for women to receive their annual
mammograms and bone density testing on-site. with chronic overstretched urban Indian health organization
conditions. Several system. Many of those seeking treatment at urban
urban Indian health organizations have developed clinics are likely to be poor and uninsured, and, as
innovative solutions to the problem. The South explained below, Medicaid covers only part of the
Dakota Urban Indian Health Center, for example, cost of their care.
created a network of clinics in Pierre, Sioux Falls
and Aberdeen, S.D., to better serve clients who
move frequently. New York City’s American Indian Private Insurance
Community House opened HIV/AIDS satellite
As a result, private health insurance and federal
programs in Buffalo, Syracuse and Hogansburg,
health care entitlements have become vital to
N.Y., to better serve its clients.
the urban American Indian and Alaska Native
In addition to urban Indian health organizations, population. But 35 percent of all American Indians
there are several entities that affect urban Indians’ and Alaska Natives and 48 percent of those with low
access to care. Each faces its own set of challenges. incomes are uninsured, largely reflecting their low
rates of job-based health coverage. (KFF, 2004)
Indian Health Service
The Indian Health Service is an agency of the
Medicaid and Medicare
U.S. Department of Health and Human Services Many urban Indians living in or near poverty face
through which health services are provided to some multiple barriers to obtaining care under Medicaid,
American Indians and Alaska Natives. (Indian which is jointly funded by the federal and state
Health Service Web site, 2006) Many urban Indians governments and managed by the states.
are ineligible for care at IHS and tribal facilities on
Half of all nonelderly American Indians and Alaska
reservations, and for all practical purposes that care
Natives are poor or near-poor, with family incomes
is unavailable to many who are eligible. Additionally,
below 200 percent of the federal poverty level. More
the urban Indian health organization network’s
than 25 percent of American Indians and Alaska
limited capacity reduces its reach.Urban Indian Access to Health Care 9
Natives are eligible for Medicaid, but only such, their “prospective payment” reimbursements
17 percent report that they are covered by it or for services are based on predetermined, fixed
other public programs. amounts. Under a complex set of rules, those
repayments currently run at between 85 percent and
Some American Indians and Alaska Natives do not
90 percent of actual costs. The 15 other non-FQHC
apply for Medicaid because they do not understand
organizations are reimbursed under even less
the enrollment process. Many are incorrectly told
generous fee-for-service systems that vary by state.
that they are not eligible for Medicaid due to
Many states believe that Indian health is a federal
misunderstandings of eligibility rules. Others do
responsibility and do not include urban Indian
not apply because of transportation difficulties or
health organizations in their provider networks. This
literacy and language barriers. For example, many
misunderstanding often limits urban Indian health
cite concerns that their property will be seized or
organizations’ reimbursement for covered services.
their assets confiscated. Some do not apply because
In addition, as states consider adding premiums
past injustices against Indians make them fear or
and cost-sharing arrangements to their Medicaid
distrust the government. (Langwell et al., 2003)
programs, urban Indian health organizations will be
Many other urban Indians in poverty are childless
subject to these requirements.
adults and do not qualify for Medicaid. In most
states, adults between 21 and 65 who are not
disabled or pregnant or do not have a dependent
child are ineligible. (Centers for Medicare and
Medicaid Services Web site)
On the positive side, Medicare, federally funded
health care for the elderly and disabled, has
benefited older urban Indians enormously.
In 1997, Congress created the State Children’s
Health Insurance Program (SCHIP) to provide
subsidized health insurance for children from
families with incomes too high to qualify for
Medicaid but too low to afford private health
Urban Indian youth celebrating their physical fitness climbing
insurance. Insurance premiums and co-payments activities in Oakland, Calif.
were waived for American Indian and Alaska Native
children in 2000. This move was partially intended
Community Health Centers
to help urban Indian families, as many take their
children to non-Indian health care providers. Some poor and near-poor urban Indians in cities
However, many of these families and many providers without urban Indian health organizations rely on
are not aware that the waiver exists. (Satter, 2002) community health centers for care. However, these
centers are under increasing strain as growing
IHS and tribal health facilities receive 100 percent numbers of middle-class Americans who have lost
federal reimbursement for Medicaid and Medicare their employer-sponsored insurance turn to them
services provided to qualified American Indians and for help. In addition, these centers do not always
Alaska Natives. Urban Indian health organizations, provide culturally appropriate services for urban
in contrast, receive only partial reimbursement. Indians. These same concerns apply to urban
Nineteen of the 34 UIHOs have been designated Indians’ use of hospital emergency rooms for
Federally Qualified Health Centers (FQHCs) and, as primary care services.10 Invisible Tribes: Urban Indians and Their Health in a Changing World
III. Challenges in Data Collection
Data increasingly drive public health spending Generally, there is a paucity of information on urban
decisions. If data on a community is not counted, Indian health. PubMed, the U.S. National Library
its health needs go unrecognized and health care of Medicine’s comprehensive Web-based health
dollars go elsewhere. archive, indexes about 2,300 scientific articles with
either “American Indian(s)” or “Alaska Native(s)” in
There is no formal public health surveillance system
their titles. Adding the word “urban” to the search
for urban Indians. Federal, state and local public
drops the number to just 63.
health institutions might collect such data, but they
are rarely disaggregated or separately analyzed. There is strong reason to believe that the few
Many standard federal health surveys cannot report studies that do exist grossly underestimate the
accurately on urban Indians, in part because they true extent of the problem. Urban Indians are
lack adequate racial designations. In an effort to frequently misclassified on vital records used to
address some of these gaps, the Urban Indian determine health statistics. Many have mixed racial
Health Institute was created as a division of the backgrounds and European or Hispanic surnames.
Seattle Indian Health Board to unify data from Fear of discrimination causes others to misstate
the urban Indian health organizations and use their heritage on official documents.
the data to address urban American Indian and
The quality of a health surveillance system depends
Alaska Native health needs and clarify health
on the quality of its data. If data are not accessible,
disparities. (Taualii et al., 2006) The majority of
they might as well not exist. And unfortunately,
current urban American Indian and Alaska Native
health statistics on urban Indians are generally of
health data available is the work of the Urban
poor quality and largely inaccessible. The situation
Indian Health Institute.
perpetuates their invisibility to the nation.
The nature of urban Indian communities also makes
Examination of data sources has found that only
it difficult to quantify their health conditions.
six out of 15 major federal health data sets can
Their numbers are small, making it hard to
provide acceptable levels of accuracy on American
create sufficiently large statistical samples. Also,
Indians and Alaska Natives. Two can be used for
unlike other urban minority groups, urban Indian
simple distributions only and the remaining seven
communities tend to be widely dispersed across
are unusable because their samples are too small.
metropolitan areas. They frequently encompass
(Appendix A, Table 5) (Unpublished UIHI analysis
many tribes and widely varying levels of experience
using data from Waksberg 2000)
with urban life. The lack of historic records makes it
difficult to trace their health patterns over time.
Simply obtaining existing data on urban Indians is
another major challenge. Privacy rules, for example,
may prevent access to data when sample sizes and
response rates are too low for general and stratum-
specific analysis.Depression Among Urban Indians 11
IV. Depression Among Urban Indians
Depression, diabetes and cardiovascular disease American Indians’ struggle with diabetes
are far from the only diseases or health conditions and cardiovascular disease, as well as other
that afflict American Indians and Alaska Natives health conditions.
in disproportionate numbers. However, these
Mental health is a national priority, as evidenced
conditions deserve heightened attention due to their
by its inclusion as a focus area of Healthy People
alarming prevalence and frequent coexistence in
2010. (Healthy People 2010 Web site) Health
this population. Moreover, some of the underlying
professionals also acknowledge that mental health
causes and markers of these three diseases are
and depression, specifically, are endemic problems
shared by other diseases and afflictions suffered
in Indian country.
by American Indians and Alaska Natives at above-
average rates. Many of their barriers to treatment are Nonetheless, depression among urban Indians has
also common to other conditions. received scant attention from researchers. Little is
known about its rates and characteristics, and there
It is common for an urban Indian to suffer from
is no uniform protocol to examine the issue. No
more than one of these diseases, which interact
aggregate data exist, and there is no plan to gather
with, amplify and perpetuate one another. For
such data. The federal government has done little to
example, research shows that the lifetime risk of
depression is doubled if a person develops diabetes.
G
(Anderson, 2001) Likewise, a study of Northern ordon S.* is a 60-year-old Blackfoot
Plains American Indians has found that those
from Montana. He was taken from
with major depression are more likely than those
his family at a young age and treated cruelly
without it to report having cardiovascular disease.
(Sawchuck, 2005) Similarly, type 2 diabetes
in boarding schools. Gordon now faces
is a strong risk factor for the development of mental health issues and was diagnosed
cardiovascular disease among American Indians and with diabetes. In addition, he struggles
Alaska Natives age 20 and older. (Galloway, 2005) with alcoholism, which has complicated
Diabetes and cardiovascular disease, both formerly his disease management. Before receiving
rare, are now among the leading causes of death for treatment at the urban Indian health clinic,
American Indians and Alaska Natives. when he drank heavily, he would stop taking
Indeed, it is useful to view the triad of depression, his insulin. Understanding the complex
diabetes and cardiovascular disease among urban nature of Gordon’s health issues, providers
Indians as a single scourge. An urban Indian might at the clinic were able to devise a treatment
respond to depression, for example, by engaging in plan that took into consideration Gordon’s
unhealthy behavior such as poor diet, smoking and multifaceted needs. Even though Gordon has
alcohol abuse. Those factors, in turn, can contribute engaged in heavy drinking since completion of
to the onset of diabetes, heart disease or both, treatment, he takes his insulin daily and has
causing even worse depression, more unhealthy not experienced any critical lows. Thanks to
behavior and premature death.
the care and counseling that he received, he
understands the importance of managing his
diabetes and is aware that every percentage
Depression Among Urban Indians
point that he reduces his A1c lowers his risk
The following discussion of urban Indians’ struggle of complications by 35 percent. His last A1c
with depression serves as an example of how in November was 7.9, down from 9.7 in June.
culture, discrimination, health workforce preparation
and health data collection affect the state of
urban Indian health. These issues similarly affect * Names have been changed to protect patient privacy.12 Invisible Tribes: Urban Indians and Their Health in a Changing World
acknowledge the subject and the dearth of research Historical Trauma
makes it challenging to describe its extent.
“We still have sorrows that are passed to us from
Some small studies, however, indicate that up to early generations, those to handle besides our own,
30 percent of all American Indian and Alaska Native
and cruelties lodged where we cannot forget.
adults suffer from depression (Substance Abuse and
We have the need to forget. I don’t know if we
Mental Health Services Administration (SAMHSA)
stopped the fever of forgetting yet. We are always
Web site), and there is strong reason to believe the
proportion might be even greater among those living walking on oblivion’s edge.”
in cities. —Louise Erdrich, The Painted Drum
Many American Indians and Alaska Natives suffer Mental health researchers have recently advanced
“historical trauma” (Brave Heart, 2004), an a theory of “historical trauma.” It suggests that
emotional reliving of wrongs against one’s people genocide, mass expulsion, forced assimilation and
that is described in greater detail below. Both other cruelties against groups shatter the lives and
conditions frequently manifest themselves as health not only of direct victims but those of their
depression. Whatever its source, depression puts descendants. Much of the pioneering work in this
people at increased risk for suicide (Lynch & Clarke, field focuses on American Indians.
2006), substance abuse (Dapice, 2006; Rao,
Historical trauma combines with poverty and
2006), and a host of other health problems.
ongoing discrimination to produce profound
As previously described, nearly half of all urban feelings of sadness, anxiety, depression, anger and
Indians live in extreme poverty. Researchers have estrangement. In American Indians it generates
recently discovered that poverty can “get under fear and mistrust of whites. (Whitbeck et al, 2004)
the skin” and make one sick. (Taylor, 1997) There is a sense of re-experiencing past wrongs,
They have linked it to biologic pathways that grief over lost languages and traditions and reduced
produce excess cortisol, inflammation, oxidative self-esteem. Loss of access to sacred sites for
stress and gene methylation, which are associated therapeutic spiritual renewal and traditional food
with increased risk of coronary heart disease, gathering is particularly traumatic. (Wilson, 2003)
diabetes, some cancers and other chronic diseases. Individuals pay less attention to their health and
(Seeman, 1997) well being (Vernon, 2001) and act out through
substance use and violence. (Brave Heart &
Few urban Indian health programs have sufficient
DeBruyn, 1998)
funding to create useful and sustainable mental
health programs. Few can afford to employ a mental
health professional or manage the cost of additional
space to treat patients in private. Many of their
The Challenges of Urban Indian
clients lack health insurance, and those who are Depression Data
insured might have policies imposing strict limits It is almost impossible to obtain an accurate picture
on mental health coverage. There is no specific of depression among urban Indians. Urban Indian
allocation for mental health in the miniscule federal health programs collect limited information on the
urban Indian health budget. extent of emotional ill health in their communities
and have a difficult time separating out patients’
Significant sums, however, are being spent on
coexisting mental health conditions. National data
social problems such as violence, alcoholism and
on the prevalence and characteristics of urban
substance abuse that are frequently linked to
Indian mental health typically come from federal
depression. The misguided assumption appears
data sets that combine information collected
to be that if bad behavior is stopped, the related
from vastly different reservation, rural and urban
mental health issue will somehow take care of itself.
populations. Sample sizes are frequently small,
Resources should also be spent on treating this
many Native people do not seek help for depression,
debilitating disease.Depression Among Urban Indians 13
and the condition is often studied in tandem with competency is clearly vital to delivering high-quality
substance abuse or violence. care in these communities. The medical profession,
however, has no cultural competency mandates,
National aggregate data, however, can offer an idea
only guidelines (National Office of Minority Health,
of the magnitude and distribution of depression
2001), and many non-Native medical trainees feel
among urban Indians. The data show that at
unprepared to treat such patients.
the national level American Indians and Alaska
Natives suffer disproportionately from depression There are few American Indian or Alaska Native
and substance abuse and, with the exception of health professionals overall, and even fewer mental
private psychiatric hospitals, are overly represented health specialists. In 1996, there were just 29
in in-patient care relative to whites. (Centers for psychiatrists of Native American heritage in the
Disease Control and Prevention (CDC), Office entire United States. The ratio of Native American
of Minority Health (OMH) Web site) More than mental health professionals to Native Americans is
one-third of IHS patient-care contacts in 2006 were about 10 per 10,000; the ratio for whites is nearly
related to mental health, alcoholism and substance double, at about 17 per 10,000. (SAMSHA Web
abuse. As previously noted, some small studies site) From 2002 to 2006, less than 1 percent of the
indicate that up to 30 percent of adult American country’s medical students were American Indian
Indians and Alaska Natives suffer from depression. or Alaska Native (Association of American Medical
(SAMSHA Web site) Colleges, 2006), and federal funds to recruit more
into the field have been targeted for elimination.
The Healthy People 2010 Midcourse Review has
Staff turnover in urban Indian health clinics appears
17 mental health objectives. Only one objective—
to be high, making it very hard to establish trust
for suicide—includes data for American Indians
with people seeking mental health care.
and Alaska Natives, and their rate is higher than
that of most other groups. Without more data, this Family physicians provide the bulk of mental
population and the challenges it faces will continue health care in America (Subramanian 2003), but
to go largely unnoticed. many lack adequate training in the screening and
diagnosis of depression. (Bell, 2005) In addition,
25 percent of resident trainees in primary care feel
Culturally Competent Care unprepared to care for people with beliefs at odds
with Western medicine, who mistrust the medical
“The last patient of the day is a tribal leader.
system or who use alternative medicine. (Weissman,
Her daughter just committed suicide that morning, 2005) Only one of the country’s 34 urban Indian
left two little kids behind and her husband. . . . health organizations sponsors a postgraduate
She couldn’t say a word. There was no point in residency training program for family physicians
interviewing her. I just held her in my arms serving American Indians or Alaska Natives.
and sang her one of my traditional songs, and
It would be extremely difficult for a non-Native
prayed hard. . . . No, they don’t teach that in
mental health professional to treat urban Indians
medical school.” effectively without understanding, accepting and
—A Native family physician working with their unique cultures. For example, it
is important for health professionals treating this
The past two generations have witnessed a
population to understand that inter-tribal cultural
renaissance of traditional American Indian and
events give urban Indians a sense of belonging
Alaska Native culture on reservations and in cities,
and healing and make them feel good about their
with salutatory effects on Native mental health.
identity, values, ceremonies and beliefs. Likewise,
At the same time, urban Indians have developed a
they should know that coming-of-age ceremonies
distinct pan-Native culture of their own. Whether
enhance urban Indian teens’ knowledge of and pride
urban or rural, Native culture is probably unfamiliar
in their culture, which in turn promotes healthy
to most non-Native health professionals. Cultural
living. (Kulis et al, 2002)14 Invisible Tribes: Urban Indians and Their Health in a Changing World
Mental health professionals emotional and spiritual. Some believe health has a
also need to understand the social component as well.
high esteem Native people
All components must be balanced for total body
have for their elders and
wellness. If one component has been neglected or
their roles as counselors
is “ill,” it is impossible to achieve overall health.
and teachers. (Mala
For example, a person who does not maintain a
personal communication,
respectful and active spiritual relationship with
2007; Marbella, 1998)
the Creator cannot attain wellness. Mental health
Those engaged in family
is thought of in a similar manner. Ignorance of
counseling, in particular,
tradition, inability to practice tradition, and the
must understand that the
often impossible challenge of balancing mainstream
entire community and an
and Native values leads to “dis-ease.” Many urban
individual’s extended clan
Indians choose to combine both Native and Western
are considered parts of that
approaches to healing.
Urban Indian youth exemplify the person’s family and should
merging of cultures.
have roles in their care.
Holistic Approach to Life and Health
“One day I was at sweat lodge and after every
sweat we had the feast, and I was finally familiar
enough with these people that I put my guard down
and started letting out some of that pain. I actually
started crying a couple of times in [the] sweat lodge
simply because I was so hot, so miserable. And yet
when I got out of that, I felt refreshed. . . . I was
going through depression workshops and all of a
sudden I didn’t feel depressed no more.”
—Tobias Martinez, Mescalero Apache,
Native American Cancer Research
Finally, and perhaps most importantly, mental health
professionals need to understand, respect and work
within the bounds of the Native philosophies of life
and health.
Native people have a holistic philosophy of life that
emphasizes and reveres the connections between
all animate and inanimate things. They also have
a holistic view of health. Many tribes believe that Totem pole at the Native American Rehabilitation Association of
health has four basic components: physical, mental, the Northwest in Portland, Ore.Type 2 Diabetes Among Urban Indians 15
V. Type 2 Diabetes Among Urban Indians
The alarmingly high prevalence of diabetes among An estimated 15 percent of American Indians and
American Indians and Alaska Natives correlates to Alaska Natives age 20 years or older who receive
federal policies that made them a predominantly care from the Indian Health Service have type 2
urban people. In the past they hunted, fished, and diabetes. (CDC, National Diabetes fact sheet, 2005)
grew their own traditional, healthy foods. Some This prevalence exceeds that of the national average
researchers believe that centuries of feast-and- (9.6 percent) as well as that of many other racial
famine cycles geared their bodies to store fat during groups. A study of two urban Indian health clinics
times of plenty. Now, genetics have combined with found that diabetes was among the top five reasons
sedentary urban life and a steady but unhealthy diet for health care visits. (Taylor, 1988)
to create disease where none existed before.
Urban-specific data suggest that American Indians
As previously noted, studies have linked depression and Alaska Natives also tend to develop diabetes
with diabetes and diabetes, in turn, with at an earlier age than whites and other race
cardiovascular disease, as examined more fully populations. (CDC, BRFSS data, 1998-2003) Once
below. An estimated 10 percent to 30 percent considered an adult onset disease, type 2 diabetes
of people of all races with diabetes also have now afflicts a larger share of American Indian and
depression, raising their risk of complications,
disability, hospitalization; added health care
R
expense; and a worse quality of life. (Anderson ichard T.* is a 71 year old man who
et al., 2001) moved to New York City when he
Diabetes is chronic and for many people fatal. was 18 years old with his grandfather. He
The body either does not produce insulin (type 1 smiles proudly when he talks of what a
diabetes) or initially fails to use it properly and then hard worker his grandfather was as an iron
gradually ceases its production (type 2 diabetes). worker in the city. He fell in love with the
There are two other types of the disease: gestational city, yet felt a loss for his home and family
diabetes (glucose intolerance during pregnancy) and
on the reservation. In 1995, Richard was
pre-diabetes (excessive blood glucose levels). While
diagnosed with diabetes and has since
all forms of diabetes exist in American Indians and
made great improvements in managing
Alaska Natives, this report focuses on type 2.
his illness. He is a regular member of the
Type 2 diabetes, which is believed to be caused by diabetes support group. Although he faces
an interplay of genetic and environmental factors, many additional health challenges, such
was once virtually unknown among American
as a hip replacement, Richard is dedicated
Indians and Alaska Natives. It now afflicts a higher
to controlling his diabetes and has made a
percentage of American Indian and Alaska Native
special effort to implement the lessons he
adults than adults in nearly all other racial or
ethnic groups in the United States (CDC, National has learned regarding food choices, home
Diabetes fact sheet, 2005) and is the fourth leading testing of blood sugars, and creative ways of
cause of their death. (IHS, Trends in Indian Health increasing his activity level. Thanks to the
2000-2001) American Indians and Alaska Natives care and support that he received, Richard
are more than twice as likely as whites to have the reports feeling much better and is able to
disease (CDC, National Diabetes fact sheet, 2005) spend quality time with his kids, grandkids,
and have a death rate from diabetes nearly four and wife.
times that of the general population. (IHS, Trends in
Indian Health, 2000-2001)
* Names have been changed to protect patient privacy.You can also read
