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The Role Of The Federal Government In Eliminating Health Disparities
Minorities live sicker and die sooner from too many acute and chronic illnesses. To eliminate racial and ethnic disparities in health, Congress and the Bush administration must address the serious challenge of increasing minorities’ access to health care and improving the quality of care they receive. We clearly need to expand Medicaid and the State Children’s Health Insurance Program (SCHIP), but we must also develop and train culturally competent providers, increase the diversity of the health care workforce, collect better race/ethnicity health data, and make a greater investment in public health.
It boggles the mind that for a generation the United States, with all its wealth and leadership, has been the only industrialized country in the world that does not guarantee health care to all of its citizens. When it comes to good health and good health care, far too many Americans have been left out and left behind. Forty-five million Americans are uninsured, and each one of these uninsured people is a tragedy waiting to happen.1 Even among those with access, the gap between what we should do in health care and what we actually do for many patients is so wide that the Institute of Medicine (IOM) has called it a "quality chasm."2 In health care, as in so many areas, minorities are disproportionately harmed. They live sicker and die sooner from a wide variety of acute and chronic conditions. African Americans are more likely than any other racial and ethnic group to develop cancer, and 30 percent more likely than whites to die from it.3 Hispanics living in the United States are 50 percent more likely than whites to suffer from diabetes, and the incidence of diabetes among Native Americans is more than twice that for whites.4 Although Asian Americans and Pacific Islanders represent only 4 percent of the U.S. population, they suffer more than half of the nation’s chronic hepatitis B infections and half of the deaths from it.5 Many factors contribute to these unacceptable disparities, including toxic environments, low levels of education, unsafe working conditions, and unemployment. However, lack of access and low-quality care are two major causes of these disparities. Levels of health insurance coverage are lower among minority populations. Of the forty-five million uninsured Americans, minority Americans account for half. Approximately 18 percent of Asians and Pacific Islanders, 20 percent of African Americans, and 32 percent of Hispanics are without health insurance coverage at any given point in time, compared with the national average of 16 percent and the average for whites of 15 percent.6 Even when minorities have health insurance, they are still less likely than whites to receive adequate health care. Minority patients are much less likely than whites to receive diagnostic and therapeutic interventions for heart disease, kidney transplants to treat end-stage renal disease, mental health services, appropriate pain management, and recommended medications for asthma and HIV/AIDS.7 More than 600 articles published during the past three decades have documented racial or ethnic variations in health care.8 Importantly, the studies also demonstrate that when minorities do receive the appropriate standard of care, disparities in health outcomes are eliminated.9 How we respond to the minority health crisis is a basic measure of the depth of the nation’s actual commitment to the ideals of liberty and justice for all.
In the mid-1940s Gunnar Myrdal’s An American Dilemma: The Negro Problem and Modern Democracy (New York: Harper, 1944) documented the lasting effects of slavery and continuing racism on the social and economic conditions, family structure and lifestyle, and political awareness of African Americans. However, the issue of health disparities did not seriously capture national attention until 1985, when Margaret Heckler, secretary of health and human services, released the Report of the Secretary’s Task Force on Black and Minority Health, which detailed the many stark differences in health between blacks and whites. The report sparked considerable attention, energy, and eventually resources. Efforts intensified in the 1990s, and under President Bill Clinton’s leadership, several federal initiatives to address the disparities were launched, including Healthy People 2010, Health Disparity Collaboratives, Racial and Ethnic Approaches to Community Health (REACH), and Excellence Centers to Eliminate Ethnic/Racial Disparities (EXCEED).10 Congress advanced the minority health agenda as well. In 2000 the Minority Health and Health Disparities Research and Education Act (P.L. 106–525) created the National Center for Minority Health and Health Disparities at the National Institutes of Health (NIH), mandated the Agency for Healthcare Research and Quality (AHRQ) to conduct research on minority health and health disparities, and directed the National Academy of Sciences to examine and report on the minority data collection practices of the Department of Health and Human Services (HHS). These federal efforts have been accompanied by similar activities in the private sector and on the state and local levels. These efforts have increased awareness of the problem and produced greater understanding of the causes of disparities and possible ways to intervene. Progress has been made in some areas. Preventive services such as Pap smears and mammograms are more widely available for black women. Overall, however, little headway has been made in improving outcomes for at-risk populations, and for some conditions, the problem has become even more serious. Since the mid-1990s, the percentage of Hispanics, American Indians, and Alaska Natives living with diabetes has soared by nearly a third.11 The number of African American children suffering from asthma has increased nearly 45 percent during the past two decades.12 Rates of obesity have increased for all Americans, but African American women have been affected the most, with a 25 percent higher rate.13 Most members of Congress would agree that the progress is far from adequate. Fortunately, more and more members on both sides of the aisle are increasingly concerned by the severity of the minority health crisis and understand the need to address it more effectively, through a federal action plan that increases minorities’ access to health care and improves the quality of care they receive.
A number of studies indicate that health insurance coverage would dramatically reduce racial and ethnic disparities in health care and improve minority health. The Commonwealth Fund has found that uninsured African Americans are more than twice as likely as those with insurance not to have a regular doctor. Hispanics with diabetes are 25 percent more likely to report eye exams and foot exams within the past year if they have health coverage.14 The federal government should take steps to expand health insurance coverage for all Americans, but with emphasis on programs and policies that produce coverage for minority Americans. Health insurance for all is still my overarching goal, so that the basic right to health care can become a reality for all citizens. In the short run, there are practical steps we can and should take to expand coverage. Unfortunately, the Bush administration’s proposals, including tax credits, health savings accounts, and association health plans, will do little to reduce the number of uninsured Americans.15 The most effective way to benefit minorities is through the expansion of Medicaid and the State Children’s Health Insurance Program (SCHIP), which have a proven track record of serving low-income and minority Americans. Sen. Olympia Snowe (R-ME) and I have proposed legislation to broaden SCHIP eligibility to include parents and pregnant women and give the states the option of covering legal immigrants and children up to age twenty. In addition, a number of senators from both parties supported a bill to eliminate the five-year waiting period for legal immigrants to participate in Medicaid and SCHIP. These and similar proposals will expand the number of insured people and will have a disproportionate positive effect on minorities.
To be successful, the federal action plan must also address the need for providers to be culturally competent, increase the number of minority providers, promote race/ethnicity data collection and reporting, and make a sizable investment in public health. Cultural competence has been defined as "the level of knowledge based skills required to provide effective clinical care to patients from a particular ethnic or racial group."16 Although this area of research is still young, findings already suggest that cultural competence improves health care for minority patients.17 Culturally competent providers know about cultural and behavioral aspects of health care in minority populations and have the necessary skills to obtain and use this information clinically in ways that benefit patients. The HHS Office of Minority Health took a major step in 2000 through its development of national standards on Culturally and Linguistically Appropriate Services (CLAS), which serve as a guide to all providers. HHS should partner with organizations of health professionals to ensure that they are trained and evaluated on their ability to care for diverse populations, and such ability should be required for licensure and accreditation. However, provider efforts are only part of the solution. Patient navigator and community health worker programs are two ways to enable minority patients to move through the health care system effectively and be actively involved in decisions on their health care.18 Language access for patients is another component of cultural competence that deserves greater federal attention. More than forty-six million people—17 percent of the U.S. population—speak a language other than English at home. The vast majority of non-English speakers are Spanish-speaking, although more than 300 other languages are spoken. Numerous studies show that effective language services improve outcomes for patients with limited English proficiency by increasing satisfaction levels, use of health services, and compliance with recommended medical advice.19 The Office of Management and Budget (OMB) estimates that language translation services would add only 0.5 percent to the cost of the average health care visit.20 The federal government should greatly increase reimbursement for language services in all federal health programs. Low health literacy is another health issue that disproportionately affects minority populations. Patients with low health literacy—the ability to read, understand, and act on health information—have great difficulty dealing with the health care system and understanding and following the recommendations of their providers. They are 50 percent more likely to require hospitalization and have poorer health outcomes.21 We need to give greater priority to finding ways to adapt health materials and interventions specifically for patients with low health literacy.
Although the racial and ethnic diversity of the United States continues to grow, the diversity of health professionals has remained essentially unchanged. African Americans, Hispanics, and American Indians now account for 6 percent of the nation’s doctors and 7 percent of nurses and dentists, despite constituting almost one-third of the U.S. population.22 The lack of a diverse workforce has a number of implications for health care. Minority health professionals are much more likely to care for minority patients, including those who are low-income and uninsured.23 Patients who share the same race or ethnic background as their provider report higher levels of satisfaction with their care and greater participation in decisions involving their health.24 In addition, language barriers between patients and providers may be reduced. Unfortunately, the door to opportunity in the health professions is only half open for minority students. Efforts to increase the number of minorities have been stymied by a number of factors. Minority students often have poor educational opportunities beginning early in their academic training, which leaves them at a disadvantage when applying to health professional schools. Minority students are also more likely to face financial challenges that restrict entry. The Supreme Court upheld the constitutionality of racial considerations in graduate school admissions in 2003, but individuals and conservative groups who oppose affirmative action continue to threaten litigation against it.25 The barriers may seem daunting, but they demonstrate the importance of federal leadership and investment in this area. Diversity training programs under current laws are designed to improve access to care in medically underserved areas and increase minority representation in the health professions. The Bureau of Health Professions (BHPr) has several programs, including the Minority Centers of Excellence, the Health Careers Opportunity Program, Faculty Loan Repayment and Faculty Fellowships, and Scholarships for Disadvantaged Students. These programs have the specific goal of increasing educational opportunities for underrepresented minorities in the health professions. These programs are successful and deserve greater investment. Seventy percent of participants in the Health Careers Opportunity Program are accepted into health professional schools, and such students are up to ten times more likely to practice in medically underserved areas when they finish their training. Institutions that receive funding for diversity programs recruit and graduate up to five times the number of minority health professionals as other institutions.26 The federal government should also encourage state, local, and private entities to reduce financial barriers for underserved students through more generous loan forgiveness, tuition reimbursement, and loan repayment programs. The U.S. Department of Education should encourage accreditation bodies to formulate and enforce standards to increase health workforce diversity. In addition, health professional groups should be encouraged to develop specific policies on the value and importance of diversity among health professionals and monitor the progress of member institutions in achieving these goals.
Improving minority health and eliminating racial and ethnic health disparities also depend on the availability of accurate health data by race and ethnicity. As described in the IOM report Unequal Treatment, standardized data collection will "allow for disentangling the factors that are associated with health care disparities, help plans monitor performance, ensure accountability to enrolled members and payers, improve patient choice, allow for evaluation and intervention programs, and help identify discriminatory practices."27 The quality of data on racial and ethnic health suffers from insufficient sample sizes, lack of standardization, and limited accuracy, and requirements and methods for collecting and reporting data widely vary among the agencies.28 The 2004 report by the National Research Council, Eliminating Health Disparities, provides important guidance to the federal agencies in this area.29 In fact, many of its recommendations echo recommendations made in 1999.30 We can clearly do a better job of translating the knowledge and tools we already have into more effective action. The private sector has been helpful in these efforts. Aetna has taken steps to collect race/ethnicity data from its members to "better understand differences in how white and minority patients get medical care," in order to develop prevention, education, and treatment programs for minorities. Nearly 80 percent of new applicants to its plans have voluntarily provided this information.31 The Health Research and Educational Trust (HRET) is leading a minority data collection initiative by the American Hospital Association for its member hospitals as well.32 The federal government should require collection and analysis of race/ethnicity data and measures of socioeconomic status and language use in its own health programs and share this information with the public.
Disease prevention is the cornerstone of good health and long, productive lives for all Americans. Disturbingly, the United Health Foundation and the American Public Health Association recently reported that public health overall saw "minimal improvement" in 2004 and that the U.S. infant mortality rate increased for the first time in forty years.33 The state of minority health is closely tied to the state of public health. Minority groups have much higher risk for diseases that can be prevented or delayed, such as diabetes, hypertension, heart disease, cancer, and HIV/AIDS.34 Some of this higher risk is attributable to factors such as less access to healthy foods; fewer opportunities for physical activity; and constant advertising of alcohol, cigarettes, and junk food in their communities.35 Minority children are more likely than white children to grow up near hazardous waste sites and to be exposed to lead paint and other poisons.36 Minority men, particularly African American men, are at greater risk of homicide and unintentional injuries.37 Yet despite all of these facts, for every health care dollar spent, as much as ninety-five cents is directed toward medical care and biomedical research, which leaves only five cents for public health.38 The nation is facing a shortfall of trained public health professionals, a weak public health infrastructure, insufficient resources, and lack of coordination among agencies and between the public and private sectors. To achieve better health for all citizens, the federal government will have to muster sufficient political will to increase appropriations for public health, particularly for the Centers for Disease Control and Prevention (CDC), which has proved its leadership on these issues. Coordinated efforts with state and local governments and the private sector are needed to clean up neighborhoods, reduce exposure to dangerous pollutants and toxins, and increase access to healthy foods and opportunities for physical activity in safe areas. Funding for community-level interventions to promote health and prevent disease using the best available science should be a priority. Additionally, empirical public health research is needed to inform and guide prevention efforts and determine whether objective evidence supports alternative and nontraditional conceptual models of disease causation and prevention. The state of U.S. minority health is an embarrassment to the nation. Minority communities are struggling with rising numbers of uninsured citizens, festering epidemics, and lower health care quality, all of which mean increased rates of diseases and preventable deaths. To end the minority health crisis, Congress and the Bush administration need to step up to the plate by increasing health insurance coverage and investing in cultural competence, workforce diversity, minority data collection and reporting, and overall public health. Greater resources should be given to the HHS Office for Civil Rights and Office of Minority Health, both of which lead the fight to reduce disparities. All of these efforts must be integrated into the larger effort to increase access and improve quality of care, since we face not only a minority problem, but a national problem. In addition, the country must be mindful that health is inextricably tied to educational opportunities for children, job security and living wages for families, safe and affordable community housing, and pension stability and social security for seniors. Elimination of disparities in health depends in part on progress in each of these critical areas. Martin Luther King Jr. said, "Of all the forms of inequality, injustice in health care is the most shocking and inhumane." We hope that Democrats and Republicans can come together in the 109th Congress and work effectively with the administration to heed Dr. King’s words and end that injustice. In the last Congress, Sen. Tom Daschle (D-SD) and I, along with many of our Democratic colleagues, introduced the Healthcare Equality and Accountability Act, which contained provisions to address each of the priorities outlined in this paper. The Democrats in the Senate remain committed to passing legislation focused on minority health and the elimination of health disparities.
Edward Kennedy is a Democratic senator from Massachusetts. He is the ranking Democrat on the Health, Education, Labor, and Pensions Committee.
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