Health Care Gap
Health Care Gap
In the preamble to the constitution of the World Health Organization (WHO) health is defined as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” While this definition has not been amended since 1948, this concept of a “complete state of health” is rarely held by those responsible for delivering medical or public health programs. Rather, utilitarian measures that bring the “greatest good to the greatest number of people” are often adopted, based on the premise that the resources needed to deliver a state of complete health to all persons are not available. Under this model, those most vulnerable to disease and those most needing preventive and curative services are the ones excluded from good health and health care.
Race is an oft-stated correlate of disease. Although some diseases are indeed more common to a particular ethnic group, such as sickle-cell anemia among those of African decent, much of the correlation between race and disease is associated more with social than biological determinants. Racism creates an environment in which the conditions that promote disease and the barriers to health are greatest in communities of color. Mortality statistics in the United States represent a concrete example of the effect of racism on health. In 2002 the life expectancy at birth of a white girl was 80.3 years, while that of an African-American boy was 68.8 years. (National Center for Health Statistics 2004). These differential mortality statistics are due not to racial predilection of disease but rather to differential access to prevention, diagnosis, and treatment of disease, as well as to the impact of racism and oppression on health. The correlation between economic and social marginalization and disease is clearly linked in the Universal Declaration of Human Rights, which mentions health only in the following terms:
Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
Recognizing that the disparities in attaining a “complete state of health” are due to social and economic conditions rather than biological determinants, the focus here will be on three aspects of health disparities that are the consequences of racism: (1) the structural factors that result in an increased risk of disease among communities of color, (2) the racial disparities in access to quality health care, and (3) the psychological impact of racism on individual and community health.
One step in achieving the complete state of health described by the WHO is the maintenance of good health and the absence of disease. Health maintenance can be viewed as two interrelated entities: the promotion of health through the behaviors that are known to maintain health (such as a balanced diet, sufficient sleep, and regular exercise) and the prevention of disease—specifically, the mitigation of risk (avoiding drugs, wearing a condom, etc.). Both health promotion and disease prevention are often presented as “lifestyle choices” that are within the control of the individual. Yet among the consequences of racism are unequal access to housing, employment, education, and even quality food and water (Williams 1999). The lack of these basic necessities constrains the choices available to populations marginalized by racism. The systematic exclusion of a group from the resources needed to develop their full human potential has been called “structural violence” (Galtung 1969). The concept of structural violence is useful in understanding the barriers that prevent health maintenance and risk mitigation in a racist society. Because infectious diseases are among the most “preventable” illnesses, and because communities of color bear a disproportion risk of transmissible disease, health promotion and disease prevention will be explored through the examples of tuberculosis (TB) and the human immunodeficiency virus (HIV).
TB is one of the most cogent examples of relationship between poor living conditions and the spread of disease among the poor, particularly African Americans. While the treatment of TB is highly effective, it was not the advent of anti-tuberculosis treatment but the improvement of living conditions that heralded the decline of TB in the United States. The rate of active TB plummeted in New York City in the late 1940s due to the post–World War II economic boom and the migration of people from urban tenements to single-family homes in the suburbs. Thus, the best way to prevent TB is to live in a less crowded environment. However, conditions of urban poverty—particularly overcrowding, poor housing, and inadequate nutrition—continue to propagate the spread of TB worldwide and are largely drawn along socioeconomic lines. The striking reappearance of TB in the United States in the 1990s has been discussed extensively in the medical literature, especially its association with HIV. Yet the underlying causes of the epidemic were structural factors rather than biological susceptibility. The overcrowding in U.S. prisons that has occurred since the 1980s as a result of the “war on drugs” has significantly impacted African Americans, who make up only 12 percent of the U.S. population but constitute more than 40 percent of those incarcerated in state and federal prisons (Human Rights Watch 2001). Additionally, the 1980s saw increased rates of homelessness due to decreased government spending on public housing. The main risk factors for TB in the 1990s outbreak were a history of homelessness and incarceration, and African-American men were disproportionately affected (Brudney and Dobkin 1991).
Some scholars trace the upsurge in TB back even earlier, to policies designed to address what was called “social pathology” in urban neighborhoods (Wallace 2001). An advisor to Mayor John Lindsey of New York developed a policy of “Planned Shrinkage” of poor African-American communities. This policy involved the withdrawal of essential services (particularly fire brigades) to encourage residents to relocate out of certain areas. As fires burned in 1975 and 1976, residents did indeed relocate, often living with several other families in one apartment or becoming homeless, as a consequence of the planned shrinkage of poor communities. Not surprisingly, the beginning of the rise of TB in New York City began in the late 1970s. While an airborne disease would seemingly be as ubiquitous as the air people breathe, the air in corridors created by structural violence considerably increases risk of TB. In the early twenty-first century, TB continues to spread along lines of racial segregation.
Like airborne diseases, sexually transmitted diseases are ubiquitous, though their distribution follows society’s racial and economic fault lines. AIDS is arguably the worst epidemic disease of the early 2000s, and it has a strikingly unequal distribution among populations, both worldwide and locally. While prevention programs are often focused on increasing knowledge and resultant behavior change; it is likely that internalized racism and low self-esteem decreases the ability of individuals to act on such knowledge. Moreover, the economic situation of the most marginalized communities may result in the exchange of sex for money, housing, security, or drugs. These situations are worsened not only by racism but by gender inequality. Lastly, the epidemic of incarceration of African-Americans foments the AIDS epidemic by increasing exposure to sexual violence and drug use and by worsening the level of poverty faced by many prisoners upon release.
The AIDS epidemic in the United States now disproportionately affects African Americans. In 2002 the Centers for Disease Control (CDC) reported that 39 percent of all AIDS cases and 54 percent of new cases of HIV infection were among African Americans. Nearly one third of all HIV infections in African-American men are due to intravenous drug use (as compared to 9 percent in white men). Yet white adolescents have been shown to start using drugs at earlier ages than their African-American counterparts. If initial use and experimentation with drugs is less common among African Americans, what would cause the high rate of HIV transmission from drug use among this population? Again, incarceration appears to be a significant risk, with both African-American men and women being incarcerated at rates upward of five times that of whites. Moreover, much of the increase in incarceration has not been for violent crime but for possession of drugs. In a 1999 report by Marc Mauer and the Sentencing Project, the disproportionate punishment meted out against African Americans in the “war on drugs” is clearly depicted: “State prison inmates sentenced for drug offenses increased 306% between 1985 and 1995, the number of African American state prison inmates sentenced for drug offenses increased 707% in the same time period.”
Once in prison, HIV risk increases significantly, due to both the high prevalence of rape and the flow of illicit drugs into prison. Additionally, life after incarceration is characterized by a tightening noose of structural violence, including joblessness, homelessness, and poverty—factors that lead to drug use, the selling of drugs, and an increase in the commoditization of sex as a means for survival.
Neither HIV nor TB has a specific racial predilection, but they are both examples of the risk for ill health that is promulgated by institutionalized racism and a lack of social and economic rights. Such structures make the maintenance of health subjugated to the daily want of basic necessities. Much of public health is focused on health promotion and disease prevention, yet such programs never identify the mitigation of racism and its social consequences as a preventive strategy.
The social and economic consequences of racism put a disproportionate burden of disease on populations of color. Yet this larger burden of disease has not led to an increased provision of diagnosis or treatment of illness. Instead, the same structural barriers that cause ill health also prevent equal access to high-quality health care. Among the most salient examples of the poor state of health care for African Americans in the United States is the gross disparity in infant mortality. Table 1 demonstrates the nearly three-fold difference in infant death rate between infants born to African-American mothers and those born to Asian, Hispanic, or non-Hispanic white mothers. The causes of the striking inequities in health outcomes of both adults and children of color are multidimensional and complex. However, several key factors result in poor health outcomes and higher mortality rates for people of color.
The United States has the largest percentage of people without health insurance of any developed nation. In 2004 more than 45 million people in the United States were without health insurance. Of the uninsured, 11.3 percent were white, 19.7 percent were black, and 32 percent were Hispanic. Lack of health insurance coverage has significant effects on health-seeking behaviors and health outcomes. For example, people without health insurance do not access screening services such as mammography for breast cancer, and they thus often delay seeking treatment until their disease is at an advanced state (Ayanian et al. 1993).
|Difference Between Infant Mortality Rates by Race or Hispanic Origin of the Mother: United States, 2000|
|Race and Hispanic origin of mother||Number of infant deaths||Number of live births||Infant Mortality rate (deaths per 1000)|
|SOURCE: Adapted from National Vital Statistics Report, Vol. No. 12, August 28, 2002.|
|Asian or Pacific||977||200,544||4.9|
Yet the difference in mortality is not only due to a lack of insurance and the late detection of disease. Even when these factors are controlled for, African-American women suffer a significantly higher mortality rate from breast cancer than white women (Joslyn et al. 2000). This difference in outcomes along racial lines has been documented in numerous other diseases as well, including heart disease, lung cancer, and colorectal cancer, which are the major killers of Americans. These studies postulate a variety of reasons for higher mortality rates among African Americans, including a lower rate of subspecialty referrals and less aggressive use of medical or surgical therapies. Poor health outcomes—even among people of color who have “access” to the health-care system, as measured by comparable insurance coverage and income— prompted the Institute of Medicine to commission a study in 2003 to examine the causes of this disparate outcomes. This study found:
Stereotyping, biases, and uncertainty on the part of healthcare providers can all contribute to unequal treatment. The conditions in which many clinical encounters take place—characterized by high time pressure, cognitive complexity, and pressures for cost containment—may enhance the likelihood that these processes will result in care poorly matched to minority patients’ needs. Minorities may experience a range of other barriers … including barriers of language, geography, and cultural familiarity. (Smedley et al. 2003)
Both access to and quality of health care is affected by racist structures within health insurance and the medical system itself. These factors contribute to a significantly higher mortality rate throughout the spectrum of life in communities of color, and a systematic change in the health system is needed to address this problem.
While racism affects physical health in overt ways, such as promoting health risks and restricting access to and quality of care, the psychological and social results of racism also affect physical and mental health, and these factors may be even more insidious and deadly than the others. One definition of health that is pertinent to racism’s impact is the concept of health as freedom or autonomy. The notion of “complete health” requires control of one’s destiny, even in the face of a physical condition termed a “disease.” A diabetic, for example, who has managed to bring her blood sugar into the normal range long-term may be considered healthy, while a Palestinian in exile from his homeland may find himself in terrible health even when there is no evident diagnosable disease. As Alastair Cambell writes, in Health as Liberation (1995), “Provided that I can follow at least some of my basic aspirations in life, I will regard myself as retaining my health, whatever the threats to my bodily or mental well-being. Without such physical and mental freedom, functional ability loses its point” (p.11).
Racism negates or diminishes the autonomy of individuals to participate in society, and this lack of connectedness affects social health. The restriction of employment and educational opportunities; the engineering of challenges to the right to vote; and the relegating of groups into neighborhoods with substandard quality of food and environmental, security, and transportation conditions are all factors that affect the social health of marginalized communities.
Racism is normalized and institutionalized by legal policies such as racial profiling, which can add hours to the transit plans of people of color. For many being stopped by the police while walking or driving and being subjected to body searches when flying or entering a building can become part of the daily routine. At its worst, racial profiling involves lethal forms of police and gang brutality against people of color. Such policies are painful reminders to oppressed groups that society accepts that some persons should be treated differently due to a perceived physical distinction associated with potential communal danger. For whites who witness profiling, the process legitimizes latent racism, while if one of the persons profiled concurs that the process is necessary he or she may internalize the racism into his or her own psyche and persona. Camera Jones defines internalized racism as “acceptance by members of the stigmatized races of negative messages about their own abilities and intrinsic worth” (Jones 2000, p. 1213).
The psychological damage from the internalization of racism includes poor self-esteem and may result in depression and other mental illnesses as well as substance abuse. People from racial minorities may internalize racism by affiliating with entities that promote the status quo such as denouncing affirmative action and promoting racial profiling or by practicing self-marginalization such as making the decision not vote. Usually, such decisions are evidence-based. For example, when racism is widely accepted as a societal norm (such areas can still be found within the United States), such decisions are made to prevent consequences that might immediately endanger the physical or mental health of an individual or community. As Stephen Biko said of the South African apartheid government that eventually killed him, “the greatest weapon in the hands of the oppressor is the mind of the oppressed.” Like the many other health effects of racism, marginalization afflicts the health of the entire community, not just the stigmatized.
As long as racist social structures continue, the health of those marginalized and stigmatized by these structures will be seriously and often lethally affected. Complete health must be viewed as a societal challenge, not just a medical one. The root causes of many diseases lie in the architecture of structural violence, which must be considered one of the main enemies of health promotion and disease prevention. Furthermore, improved access to and provision of high quality and equitable health care for individuals from minority groups must be the top priority for a medical system that is failing the most vulnerable. Lastly, the demonstrable nature of racism and its deleterious effect on individual and community health suggests that racism itself should be defined as a diagnosable disease, with its own category in medical literature, education, research, and policy. Based on the grim statistics that the disease of racism brings to society, major institutions, such as the National Institutes of Health, should support formal research on codifying racism’s symptoms, signs, and sequelae. Such research should inform the investments needed to address and remediate the unacceptable human cost that racism incurs on individuals and society.
SEE ALSO Brazilian Racial Formations; Canadian Racial Formations; Caribbean Racial Formations; Cuban Racial Formations; Diseases, Racial; Haitian Racial Formations; Health Disparities between Indians and Non-Indians; Infant Mortality and Birth Weight; Medical Experimentation; Medical Racism; Mental Health and Racism; Social Problems; South African Racial Formations; United Kingdom Racial Formations.
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Joia S. Mukherjee