In all 12 Indian Health Service Areas, diabetes is reported as one of the top The prevalence of diabetes in adults worldwide was estimated to be 4% in 1995 …


New York Times Interview

To: Liz Neporent, Contributing Editor

Topic: Native Americans and Diabetes

Mariana L Ferreira, PhD

University of Tennessee
Sept 11, 2000

1 What statistics can you provide me related to Native Americans and
Diabetes?

By comparing incidence and prevalence rates for diabetes, diabetes-related
complications and risk factors for diabetes, there is a disparity between
Native American communities and the population of the United States as a
whole
National estimates show that on average, the age-adjusted prevalence of
type 2 diabetes which accounts for 90-95 of all cases is 28 times
higher among American Indians than non-Hispanic whites

In 1996, 9 of American Indians/Alaskan Natives aged 20 years or older had
diagnosed diabetes In all 12 Indian Health Service Areas, diabetes is
reported as one of the top major health problems In some tribes, notably
the Pima Indians of Arizona, half the adults have diabetes, and the
official rate of diabetes among Navajo Indians aged 45 or over is 40
The
actual prevalence of the disease may be one-third to one-half higher in
many communities because of undiagnosed cases, as estimated by the American
Diabetes Association

The disease is also increasing in prevalence among all American Indian and
Alaska Native populations IHS studies show that between 1991-97, the
prevalence of diabetes increased in all major regions served by the agency
The in prevalence ranged from 17 among tribes in the Northern Plains to
80 in Alaska Two tribes in the Nashville Area, the Choctaw and Cherokee,
had a 30 increase in diabetes prevalence in those 6 years Earlier, in
1989, a survey among the Mississippi Choctaw showed that more than one-
third of the 638 adults from ages 45 to 64 years had diabetes, and there
were almost as many cases in the younger age group from ages 15 to 44
years IHS National Diabetes Program - Special Diabetes Program for
Indians Interim Report to Congress, Jan 2000

Type 2 diabetes is now a worldwide epidemic In the United States alone,
the share of the population diagnosed with diabetes jumped 33 nationally,
to 65, between 1990 and 1998 CDC Report, Sept 2000 The prevalence of
diabetes in adults worldwide was estimated to
be 4 in 1995 and to rise to
54 by the year 2025 A recent Diabetes Care 1998 study shows that the
number of adults with diabetes in the world will rise from 135 million in
1995 to 300 million in the year 2025 The major part of this numerical
increase will occur in developing countries There will be a 42 increase,
from 51 to 72 million, in the developed countries and a 170 increase, from
84 to 228 million, in the developing countries Thus, by the year 2025,
more than 75 of people with diabetes will reside in developing countries,
as compared with 62 in 1995 The countries with the largest number of
people with diabetes are, and will be in the year 2025, India, China, and
the US

The distribution of diabetes is of utmost importance when we try to
elucidate the causes of the epidemic Recent studies 1980s and 1990s
reveal that diabetes is most prevalent among migrating, traumatized and
socioeconomically disadvantaged populations in Australia, Brazil, Canada,
Ethiopia, India, Japan, New Guinea and Tanzania, among other countries In
the United States, a disparity also exists when we compare prevalence rates
for African-Americans and for Hispanics, and the population of the United
States as
a whole Among Mexican farmworkers in the southern US working
in a debt-peonage system and living below the poverty line, the prevalence
of type 2 diabetes is also 2 to 3 times higher than national average
currently at 65

2 Do you have an opinion on why they are at such high risk?

Yes, I do My own research among Native Americans in Northern California
1992 to date, current exploratory research among the Eastern Band of
Cherokees in North Carolina 2000, and among Brazilian Indians in the
Amazon, and in central and southern Brazil 1988 to date, has shown that
trauma-especially perceived trauma and traumatic memory-plays a
fundamental role in structuring risk for type 2 diabetes in indigenous
peoples

Among the 3000 Yurok Indians of northern California, for instance, there is
a strong, positive association 628, adjusted for age, between
individuals who have experienced trauma, and individuals who have been
diagnosed with type 2 diabetes This correlation is highly significant in
lieu of the sample size n544, randomly selected among 1700 individuals
of 16 Yurok extended families currently living on, or on the outskirts of,
the Yurok Indian Reservation The results of a logistic
regression analysis
applied to the same database reveal that when an individual is traumatized,
he/she has a much higher risk of having diabetes Interestingly enough,
trauma is also positively correlated with alcohol abuse 274 p0001 and
drug abuse 191 p0001, disorders that are frequently found among
families where diabetes is most prevalent[1]

Traumatic memory among the Yuroks gravitates around 1 severe depopulation
–more than 90 of Native Californians died between 1850 and 1920, and
memories of massacres, decapitation, public hangings and forced labor are
still vivid today; 2 high unemployment and arrest rates, attributed by
the Yuroks to racism and discrimination against Indian people; 3 high
incidence of premature death-especially the early loss of a loved one,[2]
4 extensive use of off-reservation boarding schools, which were fashioned
after prison models in the US, and where approximately 80 of the Yurok
population were confined between 1890 and 1940; and 5 violence
experienced in foster care, where Yurok children were sent because their
mothers were considered unfit to raise them in the 1950s, 60s and 70s
Yurok men and women associate the onset of diabetes to one or more
of these
traumatic events[3]

Physiologically speaking, the relationship between traumatic experience or
stress, and elevated blood sugars-an important symptom of diabetes-has
been established for over 100 years Increased pituitary-adrenal and
autonomic responses to stress have been linked to the onset of diabetes
mellitus since the French physiologist Claude Bernard first showed, in
1877, that diabetes originates in the nervous system The subjective
aspects of emotions-sensations and feelings-intensify the activity of the
autonomic nervous system ANS, which produces alterations in cardiac
frequency, blood pressure and concentration of blood sugars This
information can be found in any textbook on neurology Recent studies
1980s and 90s on fight or flight reactions also reveal how traumatic
events can result in a marked and eventually sustained hyperglycaemia

Social and behavioral scientists have also been very active in
demonstrating how emotions involve widespread activations of thought
materials-variously called appraisals, cognitions, or judgements
Such materials or knowledges, whether conscious or semi-conscious, have
been shown to arouse the ANS or endocrine system, in the
context of war,
confinement in boarding schools, mental homes and state prisons, and
sorcery accusations that provoke grief, fear, anger, anxiety and
depression

In southern Brazil, too, trauma structures risk for type 2 diabetes in
indigenous communities My post-doctoral U of São Paulo 1997-99 research
on the social causes of degenerative diseases among the Terena, Guarani
Nhandeva and Kaingang of the state of São Paulo shows a strong, positive
correlation 582 between individuals who have experienced trauma, and
individuals diagnosed with type 2 diabetes In this particular context,
traumatic experiences are similar to those experienced by the Yuroks and
other Native Americans in the US: 95 depopulation in the last 100 years,
relocation to reservations, forced labor, discrimination, violence, poverty
and premature death Ferreira 1998, 1999, 2000, in print Interestingly
enough, Indian policies in Brazil were, to a large extent, modeled after US
policies; eg, the reservation system It should also be noted that in
Brazil and other tropical countries such as India and Nigeria, diabetes
does not always correlate positively with obesity and sedentary lifestyle,
and therefore the
disorder has been called lean diabetes or tropical
diabetes

3 Do you think there are any factors that could be changed to help the
problem?

Yes I propose a radical shift in the definition of diabetes, elevating the
centrality of affection and the political dimension of emotional including
traumatic expression as core analytic concepts and methodological tools
Physiologically speaking, this means directing our attention to the role
played by the autonomic nervous system– especially the sympathetic nervous
system-in triggering the onset of type 2 diabetes Prevention and treatment
strategies will consequently be geared towards promoting social and
emotional well-being, which encompass reducing hostility and depression,
and a reduction in the occurrence of stressful situations

Historians of science and critical medical anthropologists have pointed out
that the limited and reified scope of biological studies of degenerative
diseases has thwarted a more comprehensive approach to the nature of such
complex ailments, particularly of diabetes Canguilhem 1988, 1991; Ferreira
1996; Foucault 1995; Taussig 1991 The current biomedical approach to
diabetes is limited because it consists
simply in the use of existing
theories the positive correlation between diabetes and obesity, family
history of the disease, and amount of Indian ancestry, for example[4] to
predict factual information of intrinsic value The restricted vision of
the research on diabetes is born from confidence in a specific
medicalized paradigm, which prevents researchers from 1 placing the
data in a new system of relations with one another, 2 devising original
frameworks which can 3 direct them to novelties, such as the centrality
of affection and the political dimension of emotional expression

To a great extent, the medical community and the diabetes industry
encourage its members and the general public to recognize obesity, family
history of the disease, and amount of Indian ancestry as risk factors for
type 2 diabetes These are the problems the literature on diabetes admits
as scientific Other problems or variables, such as environmental, cultural
and emotional factors, are often rejected as metaphysical, or else, when
cited, considered too complex or sometimes just too problematic to be
worth the time

The use of a dated, and quite restrictive concept of culture can explain
why emotions and
traumatic memory cannot be stated in terms of the
conceptual and instrumental tools supplied by the clinical diabetes
paradigm Although several definitions of culture have been advanced in
anthropologys 150 years of existence as a discipline, the classic
conception of culture as a set of values and norms that determines
behavior, advanced by anthropologist Franz Boas during the turn of the
twentieth century, is used consistently throughout the medical literature
on type 2 diabetes that claims to take cultural factors into
consideration[5] The adoption of the classic notion has profound
implications in the knowledge that is produced about type 2 diabetes
Coupled with the accepted biomedical data about the disease, which
gravitates around diet, sedentary lifestyle and genetics, cultural norms
and values are reduced to nutritional and exercise behaviors, which are
ultimately connected to individuals genotypes Such a narrow and dated
conception of culture has prevented researchers from grasping the broader
and deeper conceptions of self, identity and the body which are at stake in
determining the social and existential causes of degenerative diseases

If, in turn, we adopt a modern
concept of culture, emotional experience
becomes variably important in structuring risk for diabetes Electing
knowledge as the major modality of culture rather than norms and values
promotes an understanding of how distinct peoples experience the world and
act upon it, including their feelings and thoughts about health and
illness The adoption of a modern concept of culture can help indigenous
peoples devise analytic models with explanatory and predictive power, for
understanding what are the factors that play a role in rendering indigenous
peoples vulnerable to type 2 diabetes This will hopefully allow native
populations to provide for the social well-being of their communities and
thus regain control of their health situation

4 Does diabetes have a particular psychological and economic impact on
Native Americans?

The economic impact on Native Americans is, of course, enormous Because
diabetes is an insidious, long-term degenerative disease with major
debilitating health consequences, such as blindness, renal malfunction, low-
extremity amputations, heart disease, and sexual impotence, it qualifies as
one of the most costly health problems in America Health care and other
costs
directly related to diabetes treatment in the US, as well as the
costs of low productivity, run 98 billion annually Source: ADA 2000
Although the Balanced Budget Act of 1997, signed by President Clinton on
Aug 5, 1997, made available 150 million of new funding to the Indian
Health Service through Grants for Special Diabetes Program for Indians, the
tribes contend that the money is not enough because it can only cover
treatment and very limited treatment, according to tribal leaders, such
as Joyce Dugan, former Chief of the Eastern Band of Cherokees

The psychological impact of the diabetes epidemic on Native American
communities is also tremendous The apparently simple and innocuous
statement that Indian heritage is a risk factor for diabetes is
emotionally charged because it touches deeply upon issues of self-
knowledge, body-imagery and social identity As a Yurok outreach worker at
United Indian Health Services in California recently put it, To say I am
Native American means I am or will be diabetic A recent statistical
analysis of the Yurok database Ferreira 2000, however, reveals that there
is a weak, negative correlation -223 between diabetes and quantum of
Indian blood[6]
This finding demonstrates, among other things, that the
concept of Indian heritage cannot be used as a general risk factor for
Native Americans Yurok tribal leaders in northern California feel that
blaming Indian blood is a pretext for discrimination, because the whole
notion of Indian heritage is not explicitly defined They repudiate this
novel and genetically based form of colonial control, which mimics the
tight scrutiny carried out in boarding schools, reservations, high-tech
prisons and mental homes they were, and still have been, confined to

In fact, few medical studies actually correlate individual genetic
admixture with the occurrence of diabetes, when stating that Indian blood
quantum structures risk for diabetes Most studies take Indian heritage
for granted, and use it as a major variable to establish genetic causative
links for the diabetes epidemic The problem here is, of course, one of
social identity, because it is closely related to the question Who is an
Indian?-which appears as the most frequently asked question in the Bureau
of Indian Affairs website While there are nations, such as the Pima of
the Gila River Indian Community, which require a minimum of
Indian
blood for tribal membership, in other groups, such as the Cherokee Tribe
of Oklahoma, there are members who are 1/2048 Cherokee Genetically
speaking, Indian heritage has different meanings for enrolled members of
the Pima and Cherokee tribes

It should also be noted that while genetic testing for other degenerative
ailments that are most prevalent among Caucasian populations, such as
Alzheimer and Huntington Disease HD, are carefully divulged, the medical
community has no reservations about advertising Indian heritage, however
loosely defined, as a risk factor for diabetes There is concern that
genetic testing, in the case of Alzheimer and HD, can produce genetic
social outcastes because issues involving health insurance, life insurance
policies, employee discrimination and negative social stigma are at stake

5 What is your opinion of the thrifty gene theory?

The thrifty gene theory Neel 1962, 1982 is, in reality, a hypothesis
that never did become a theory, because it failed to show the mechanisms
through which a hypothetical thrifty gene, which protected the body against
starvation in times of great seasonal fluctuation, became maladaptive with
modern patterns of food
consumption and the ability to store fat, leading
to diabetes

I have discussed extensively the negative effects of the thrifty gene
and other genetic theories on the prevention, diagnosis and treatment of
type 2 diabetes and other degenerative diseases among indigenous peoples in
northern California My research has shown the ways in which social
relationships have become increasingly forged around biological
identities, since Native Americans today tend to structure their personal
interactions taking blood quantum and genetic makeup into consideration
Couples consider fractions of Indianess in their marital decisions and
adoptions–a high degree of Indian blood, for instance, puts them at higher
risk for, say, diabetes, while a low degree might not make them eligible
for health care and other federal benefits Teenagers sometimes end up
using bio-identities as excuses for Indian failures, and on occasion deny
their indigenous ancestry and mobilize against each other after relentless
media and academic representations of the genetically flawed Indian
people Adults tell one another to watch out for sugar, fat, alcohol and
drugs, because your blood tells on you: the doctor can tell
right away
what youve been up to This attitude leads to another important impact of
genetic paradigms on individuals self-knowledge: Patients and their
families reason that if diabetes is genetic or in their blood, there
is nothing that can be done about it Why undergo a strict diet, vigorous
exercises, and frequent blood screening if the disorder is a hereditary
ailment? These findings have made health professionals at United Indian
Health Services in northern California stop blaming the thrifty gene as a
risk factor for diabetes

Considerable efforts in trying to find a genetic cause for type 2 diabetes
have remained unsuccessful Although recent data American Journal of Human
Genetics 2000 collected among the Pima Indians of the Gila River Indian
Community in Arizona who reportedly have the highest incidence rate of
type 2 diabetes in the world suggest strong genetic components in type 2
diabetes, the nature of such genetic components have not been determined
In this respect, and under its mandate to eliminate health disparities,
HEALTHY PEOPLE 2010, a national health promotion and disease prevention
initiative of the Department of Health, makes the following statement about
Race
and Ethnicity:

Current information about the biologic and genetic characteristics of
African Americans, Hispanics, American Indians, Alaska Natives,
Asians, Native Hawaiians, and Pacific Islanders does not explain the
health disparities experienced by these groups compared with the
white, non-Hispanic population in the United States These disparities
are believed to be the result of the complex interaction among genetic
variations, environmental factors, and specific health behaviors US
DHHS 2000: 12-13; my emphasis

6 Is there any statement you would like to make about this topic,
especially any social commentary as to why this situation exists?

A radical redefinition of what diabetes mellitus actually is, and what the
disorder represents for modern Native Americans are crucial questions that
need to be urgently addressed if we are to halt the perverse outcomes of
such a devastating epidemic Narrow biomedical models have not been able to
explain the diabetes problem nor provide solutions Moreover, favoring
biologic and genetic characteristics when explaining why diabetes is so
prevalent among certain peoples has had the effect of
making the intense
suffering experienced by Native Americans seem more distant and therefore
less affective, because it is imputed to otherness Programs need to be
built on scientifically grounded theories and models, rather than on
speculations about putative genetic or biologic features that indigenous
peoples share in the US–and all over the world, for that matter
Furthermore, the explanatory and predictive power of any analytic model
needs to be grounded in the ethics of social justice

In order to elucidate the links among domination, demoralization and
disordered emotional experience, which afflict Native American communities
in the US, I propose that we 1 reconsider the diabetic experience
within a broader semantic domain that extends well beyond the narrowly
defined biologic and genetic condition into the realms of social relations,
history and American Indian identity, which can lead us to 2 consider
type 2 diabetes as a reaction of the organism to adverse life conditions,
rather than a morbid or pathological phenomenon superimposed on the
organism[7] In this respect, and if we consider emotional experience-
especially traumatic memory-as variably important for
structuring risk for
type 2 diabetes, I strongly believe that it will take emotional liberty,
among other things, to free Native Americans from the deleterious effects
of the diabetes epidemic As defined by anthropologist W Reddy Cultural
Anthropology 2000, emotional liberty is the freedom to change goals in
response to bewildering, ambivalent situations, and to undergo conversion
experiences and life-course changes involving numerous contrasting
incommensurable factors What emotional liberty means for Native American
communities and individuals at risk for diabetes, however, will depend on
what each and every one of them define as social and emotional well-being
———————–
[1] The qualitative information on which these numbers are based are part
of my doctoral dissertation Sweet Tears and Bitter Pills The Politics of
Health among the Yuroks of Northern California , UC Berkeley-UC San
Francisco 1996, recently submitted to the U of Oklahoma Press, and
published in Culture, Medicine and Psychiatry-Journal of the Harvard
School of Social Medicine, and in Revista de Antropologia-Journal of the
Dept of Anthropology of the U of Sao Paulo The statistical analyses are
being
submitted to Human Genetics and Diabetes Educator
[2] Between 1950 and 1969, Yurok life expectancy was at its lowest-364
years It rose to 432 between 1970 and 1989, and reached 556 years in
1996, mostly because of the health services provided by the tribally owned
and operated United Indian Health Services in northern CA
[3] Recent studies have demonstrated that early adverse experiences play a
preeminent role in the development of neurological disorders in adult life,
thereby contributing to vulnerability to psychopathological conditions
Heim et al 2000; Nemeroff 1999, Stein et al 1996, Mullen et al 1996
Women with a history of childhood sexual or physical abuse, for instance,
exhibit more symptoms of depression and anxiety, and more frequently
attempt suicide than women without a history of childhood abuse Heim et
al 2000 Childhood abuse also predisposes to the development of anxiety
disorders in adulthood, including panic disorder and generalized anxiety
disorder Portegijs et al 1996; Stein et al 1996 Early parental loss,
whether due to parental separation or premature death has also been found
to increase the risk for major depression in case control and
epidemiological studies
Agid et al 1999; Furukawa et al 1999; Mullen et
al 1996; Oakley-Browne et al 1995; Roy 1985 In all these studies,
nervous system hyperreactivity appears as a persistent consequence of
childhood abuse that may contribute to the predisposition for adulthood
psychopathological conditions

[4] See, for example, The Strong Heart Study Lee et al 1995
[5] See, for example, Smide et al 1999, Hunt et al 1998, Lee et al 1995
[6] The data were analyzed by means of a Logistic Regression, which in this
case was used to predict the probability of an individual of a given blood
quantum level 0-10 having diabetes
[7] This is what the French physiologist Claude Bernard proposed more than
100 years ago, when he went against theories of his day and argued that the
symptoms of diabetes excessive urination, thirst and sugar in both the
blood and the urine, save for their intensity, are known to the normal,
physiological state

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