Health Disparities Since the Passage of the Patient Protection and Affordable Care Act (ACA) of 2010
Daryll C. Dykes, Health Injustice and Justice in Health: The Role of Law and Public Policy in Generating, Perpetuating, and Responding to Racial and Ethnic Health Disparities Before and after the Affordable Care Act, 41 William Mitchell Law Review 1129-1285 (2015) (493 Footnotes)
During the campaign leading up to the 2008 presidential election, Illinois Senator Barack Obama touted health reform, including the elimination of health disparities, as a major objective of his presidency if he were elected. Following his victory, the official website of the president-elect said:
President-elect Barack Obama and Vice President-elect Joe Biden will tackle the root causes of health disparities by addressing differences in access to health insurance coverage and promoting prevention and public health, both of which play a major role in addressing disparities. They will also challenge the medical system to eliminate inequities in health care through quality measurement and reporting, implementation of effective interventions such as patient navigation programs and diversification of the health workforce. Just over a year later, and following an unusual and highly controversial series of ad hoc legislative procedures, President Barack Obama signed the Patient Protection and Affordable Care Act into law on March 23, 2010. Together with Executive Order 13535, Ensuring Enforcement and Implementation of Abortion Restrictions in the Patient Protection and Affordable Care Act, issued by President Obama on March 24, 2010, and the Health Care and Education Reconciliation Act of 2010, signed into law six days later, these laws--collectively referred to as the Affordable Care Act (ACA), and commonly referred to as Obamacare--represent “the culmination of more than 70 years of attempts by the federal government to expand health care access and coverage.” Amidst sweeping changes to the U.S. health care system, ACA includes several provisions addressing disparities in health and health care.
A. Goals of the ACA to Eliminate Disparities in Health and Health Care
President Obama's signature health reform legislation includes both general and specific measures to eliminate disparities in health and health care.
1. General Measures to Reduce Disparities Through Increased Access to Affordable Quality Health Insurance and Health Care
The ACA was designed to fill gaps in the existing framework of American health insurance coverage with both public and private sector provisions aimed at the states, insurance companies, employers, and individuals. According to a 2010 report prepared by the Robert Wood Johnson Foundation (RWJF), full implementation of the ACA, as written, would result in 22.1 million *1196 nonelderly uninsured Americans, as opposed to over twice as many (49.9 million) without the Act's reform provisions.
a. Expansion of Medicaid and the Children's Health Insurance Program
A cornerstone of the ACA is its provision for expanded health coverage through the reform of existing state-run Medicaid programs. Prior to passage of the ACA, on average, states restricted Medicaid eligibility to unemployed parents with annual income below thirty-seven percent of the federal poverty level (FPL) and employed parents with income below sixty-three percent of the FPL. However, most states denied Medicaid benefits to adults without dependent children regardless of income, and only certain “categories of low-income individuals, such as children, their parents, pregnant women, the elderly, and individuals with disabilities” have been eligible for benefits. Under the Act as written, the AAC required, as of January 1, 2014 and as a condition of continuing eligibility for federal Medicaid funds, the states to expand Medicaid coverage to all non-Medicare eligible individuals under age sixty-five (including children, pregnant women, parents, and adults without dependent children) with household incomes up to 133% of the FPL. To finance the *1197 coverage for the newly eligible Medicaid enrollees, the states would receive one hundred percent federal funding for 2014 through 2016, ninety-five percent federal financing in 2017, ninety-four percent federal financing in 2018, ninety-three percent federal financing in 2019, and ninety percent federal financing for 2020 and subsequent years. Medicaid expansion, together with less dramatic expansions to coverage rules and federal reimbursements under the Children's Health Insurance Program (CHIP), would provide new insurance coverage to 13.1 million uninsured adults and 3.7 million uninsured children, or approximately twenty-nine percent of the estimated 49.9 million nonelderly uninsured.
b. American Health Benefit Exchanges
Another hallmark of the ACA was its requirement that each state would establish an American Health Benefit Exchange (Exchange) to facilitate each person or family's purchase of a qualified health plan (QHP). The health insurance exchanges were meant to be consumer-friendly marketplaces, operated mainly on the Internet, where consumers can browse through the available qualifying health plans and choose the plan that is best for themselves and their families. Notably, the ACA requires that processes for outreach, marketing, and benefit explanations--for QHPs offered through new exchanges--serve “[t]he needs of underserved and vulnerable populations” and are “culturally and linguistically appropriate.”
c. Premium Assistance Tax Credits
Beginning in 2014, taxpayers with household income between 100 percent and 400 percent of the federal poverty level can qualify for a health insurance premium assistance credit for qualified *1198 health plans purchased through the state Exchanges. As of April 2014, the Congressional Budget Office (CBO) and Joint Committee on Taxation estimated that, over the course of calendar year 2014, an average of six million people would be covered by insurance obtained through the Exchanges. CBO anticipates “that coverage through the Exchanges will increase substantially over time to an average of 13 million people in 2015, 24 million in 2016, and 25 million in each year between 2017 and 2024.” Roughly three-quarters of those enrollees are expected to receive exchange subsidies. Theoretically, since Hispanics and African Americans tend to have lower rates of employer-sponsored health insurance coverage, these groups are more likely to take advantage of the Exchanges and premium assistance tax credits.
d. Community Health Centers
For more than forty-five years, the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services has supported Community Health Centers (CHCs) to provide comprehensive, culturally competent, quality primary health care and supportive services to medically underserved communities and vulnerable populations. CHCs are governed by community boards composed of at least a fifty-one percent majority of health center patients who represent the population served and fees are adjusted based on the patient's ability to pay. Of the 21.7 million patients served in CHCs during 2013, ninety-two percent were below the federal poverty level, sixty- *1199 two percent were racial and ethnic minorities, thirty-five percent had no health insurance, and thirty-two percent were children. The ACA provides $11 billion in increased appropriations between 2011 and 2015 for the operation, expansion, and construction of health centers throughout the nation, allowing CHCs to nearly double their patient capacity over this time period.
2. Specific Measures of the ACA Aimed at Eliminating Health Disparities.
a. Nondiscrimination Under Section 1557 of the ACA
Section 1557 of the ACA leaves intact the civil rights protections established under Title VI of the Civil Rights Act of 1964, including the prohibition against intentional discrimination in “any program or activity receiving Federal financial assistance.” Moreover, section 1557 expressly extends the health care-specific civil right to also prohibit discrimination on the basis of gender, disability, or age. Section 1557 also extends the prohibition against discrimination to federally administered health programs and new ACA-authorized entities like Exchanges, in addition to federally funded health programs.
Perhaps most significantly, section 1557 provides enforcement mechanisms under Title VI, Title IX of the Education Amendments of 1972, section 504 of the Rehabilitation Act of 1973, and the Age Discrimination Act of 1975. Thus, according to Professor Sidney Watson, because of the various enforcement mechanisms provided, section 1557 “reaches both intentional discrimination and policies and practices that have a disparate impact in *1200 minorities and provides for a private right of action to enforce claims of both intentional and disparate impact discrimination.”
b. Diversifying the Workforce
Based on the premise that minority health care providers are significantly more likely to treat minority patients and practice in poor and underserved areas, and that having more diverse providers who reflect the racial and ethnic composition of the population, the ACA incorporated a number of provisions to improve the “access and the delivery of health care services for all individuals, particularly low income, underserved, uninsured, minority, health disparity, and rural populations.” Evidence also indicates that greater health care workforce diversity is associated with “greater patient choice and satisfaction, and better educational experiences for health profession students, among many other benefits.”
Among the workforce expansion provisions of the ACA is the establishment of the National Health Care Workforce Commission (the NHCWFC). The NHCWFC serves as a national resource for Congress, the President, and states and localities to: (1) communicate and coordinate with federal departments; (2) develop and commission evaluations of education and training activities; (3) identify barriers to improved coordination at the federal, state, and local levels and recommend ways to address them; and (4) encourage innovations that address population needs, changing technology, and other environmental factors.
Section 5401 of the ACA amended the Public Health Service Act to continue to provide Center of Excellence grants to educational entities (including designated health professions schools and other public and nonprofit health or educational programs) for the purpose of supporting programs of excellence in *1201 health professions education for under-represented minority students. Section 5402 authorizes loan repayment, scholarships, and other educational assistance for disadvantaged health professions students, and sections 5403 and 5404 reauthorize Area Health Education Centers (AHEC) and Workforce Diversity Grants (WDG), respectively. AHEC grants enable eligible entities to initiate, maintain, or improve community-based training and education in order to, among other things, increase the number of underrepresented minorities and individuals from disadvantaged or rural backgrounds into health professions, and support such individuals in attaining such careers. Similarly, WDG provide scholarships, stipends, pre-entry preparation, advanced education preparation, and retention services to increase nursing education opportunities for individuals from disadvantaged backgrounds. The ACA also reauthorizes and expands Health Professional Opportunity Grants (HPOG), designed to “provide training in high-demand health care professions to Temporary Assistance for Needy Families (TANF) recipients and other low-income” populations with high concentrations of Native American, Hispanic, and African American people.
Consistent with compelling evidence that providers who have participated in cultural competence training and education can improve the quality of care given to diverse populations, the ACA also invests in the development and evaluation of culturally competent curricula in educational training.
*1202c. Structural Changes in the Accountability Mechanism
Although the section did not create any new regulatory authority, ACA section 10334 transferred the Department of Health and Human Services' Office of Minority Health to the Office of the Secretary, and established and funded six other Offices of Minority Health within existing HHS offices and agencies. The section also re-designated “the National Center on Minority Health and Health Disparities (NCMHD) to the National Institute on Minority Health and Health Disparities (NIMHD).” Directed by the twenty-four-year veteran leader of NIH's minority health initiatives, Dr. John Ruffin (until his retirement in March 2014), the ACA charged NIMHD with the planning, coordination, review and evaluation of federally funded research on minority health and health disparities.
d. Amendment and Reauthorization of the Indian Health Care Improvement Act
The original IHCIA provided funding for IHS programs through fiscal year 1980, with additional appropriations through 1984 to be authorized through subsequent legislation. A series of amendments authorized IHS funding through fiscal year 2000, but until 2010, IHS relied upon Congress to annually authorize funds *1203 to support and continue its operations. However, with the passage of the ACA, the IHCIA was reauthorized “permanently and indefinitely” with funds appropriated through fiscal year 2010 and every fiscal year thereafter until all federal funds are expended.
The amended version of the IHCIA differs in several respects from the original version passed by Congress in 1976. Included among the major changes are: (1) enhancement of the authorities of the IHS director, including the responsibility to facilitate advocacy and promote consultation on matters relating to Indian health within the Department of Health and Human Services;(2) authorization for hospice, assisted living, long-term, and home and community-based care; (3) extension of the ability to recover costs from third parties to tribally operated facilities; (4) updates to current law regarding collection of reimbursements from Medicare, Medicaid, and CHIP by Indian health facilities; (4) provisions for tribes and tribal organizations to purchase health benefits coverage for IHS beneficiaries; (5) authorization for IHS to enter into arrangements with the Departments of Veterans Affairs and Defense to share medical facilities and services;(6) provisions for a tribe or tribal organization carrying out a program under the Indian Self-Determination and Education Assistance Act and an urban Indian organization carrying out a program under Title V of IHCIA to purchase coverage for its employees from the Federal Employees Health Benefits Program; (7) authorization of a Community Health Representative program for urban Indian organizations to train and employ Indians to provide health care services; and (8) direction for IHS to establish comprehensive behavioral health, prevention, and treatment programs for Indians.
e. Data Collection and Monitoring
The ACA requires that any federally conducted or supported health care or public health program, activity, or survey collects and reports, among other things, data on race, ethnicity, sex, primary language, and disability status for applicants, recipients, or *1204 participants. The secretary must make these reports available to a number of federal agencies, and must ultimately identify approaches to improve the identification of health care disparities, and must lead efforts in analyzing and monitoring trends in health disparities from the data collected. The data and analyses must be publicly reported on the HHS website, and may be made available for other federal agencies, non-governmental entities, and the public for additional research or analysis.
f. The Patient-Centered Outcomes Research Institute
Section 6301 of the ACA created and authorized funding for the Patient-Centered Outcomes Research Institute (PCORI)--an independent non-profit, non-governmental organization that funds comparative clinical effectiveness research and programs to provide information about the best available evidence to help patients and their health care providers make more informed decisions. One of PCORI's five national priorities for research is to address disparities by “[i]dentifying potential differences in prevention, diagnosis, or treatment effectiveness, or preferred clinical outcomes across patient populations and the healthcare required to achieve best outcomes in each population.” For fiscal years 2014-19, the Patient-Centered Outcomes Research Trust Fund will receive a combined estimated average total of $650 million per year.
B. HHS Initiatives to Implement ACA and Eliminate Disparities
On April 8, 2011 the U.S. Department of Health and Human Services launched two strategic plans aimed at reducing health disparities: the National Stakeholder Strategy for Achieving Health *1205 Equity and the HHS Action Plan to Reduce Racial and Ethnic Health Disparities. Together, the plans are intended to “provide strong and visible national direction for leadership among public and private partners” toward the goal of health equity.
1. Healthy People 2020
Since 1979, the Healthy People initiative has engaged a growing network of professional and public partners in a systematic approach to health improvement through “setting goals, identifying baseline data and 10-year targets, monitoring outcomes, and evaluating the collective effects of health-improvement activities nationwide.” Since the first iteration launched by HHS, Healthy People has identified emerging public health priorities and helped to align health-promotion resources, strategies, and research. Healthy People 2010 (released in 2000) focused on the overarching goals of increasing the quality of life for Americans and eliminating health disparities. In assessing the nation's progress over the decade, it was clear that overall life expectancy had increased, but the goal of eliminating health disparities remained unmet.
Healthy People 2020 seeks to (1) eliminate preventable disease, disability, injury, and premature death; (2) achieve health equity, eliminate disparities, and improve the health of all groups; (3) create social and physical environments that promote good health for all; and (4) promote healthy development and healthy behaviors across every stage of life. Specifically, according to HHS Assistant Secretary Howard Koh, in reaffirming the goal of eliminating health disparities, Healthy People 2020 “breaks new ground . . . [by emphasizing] the need to consider factors such as *1206 poverty, education, and numerous aspects of the social structure that not only influence the health of populations but also limit the ability of many to achieve health equity.” This explicit acknowledgment of “social determinants of health”--the powerful, complex relationships between health and biology, genetics, and individual behavior, and between health and health services, socioeconomic status, the physical environment, discrimination, racism, literacy levels, and legislative policies--brings broadened approaches to eliminating health disparities and “an action model that aligns these approaches and articulates a feedback loop as the nation monitors its progress toward achieving its goals.” Additionally, throughout the next decade, Healthy People 2020 will assess health disparities in the U.S. population by tracking rates of illness, death, chronic conditions, behaviors, and other types of outcomes in relation to demographic factors including: race and ethnicity; gender; sexual identity and orientation; disability status or special health care needs; and rural or urban geographic location.
2. The National Stakeholder Strategy for Achieving Health Equity
The Office of Minority Health at HHS initiated and sponsored the National Partnership for Action to End Health Disparities (NPA) “to mobilize a nationwide, comprehensive, community-driven, and sustained approach to combating health disparities and to move the nation toward achieving health equity.” This collaborative--composed of stakeholders from local, state, and tribal communities; government agencies; and places of education, business, and health care delivery--convened in February of 2009 for the Third National Leadership Summit on Eliminating Racial and Ethnic Disparities in Health to identify and help shape the “core actions for a coordinated national response to ending health *1207 disparities.” As a result of the Summit and through two years of subsequent regional conversations, focused stakeholder meetings, public review and input, and a period of analysis, discussion, and planning throughout HHS, the NPA produced the National Stakeholder Strategy for Achieving Health Equity (the National Stakeholder Strategy or NSSAHE).
The National Stakeholder Strategy provides “an overarching roadmap for eliminating health disparities through cooperative and strategic actions” at the federal level. This is coordinated by the Federal Interagency Health Equity Team (FIHET), now comprising representatives of HHS and eleven other federal, cabinet-level departments, and through regional “Blueprints for Action” at local, state, and regional levels by partners across the public and private sectors. The National Stakeholder Strategy is composed of twenty strategies for action to end health disparities--each linked to one of five fundamental goals, broadly labeled “Awareness,” “Leadership,” “Health System and Life Experience,” “Cultural and Linguistic Competency,” and “Data, Research, and Evaluation.” The National Stakeholder Strategy is intended to provide “a common reference, language, and starting point for those who wish to join in partnership with like-minded individuals and organizations to achieve health equity in the United States.” “Local groups can use the National Stakeholder Strategy to identify which goals are most important for their communities and adopt the most effective strategies and action steps to help reach them.”
*12083. HHS Action Plan to Reduce Racial and Ethnic Health Disparities
The HHS Action Plan to Reduce Racial and Ethnic Health Disparities (Action Plan)--“the first federal strategic disparities plan and the most comprehensive federal commitment in this area to date” key provisions of the Affordable Care Act and an array of national strategic planning initiatives. The Action Plan's framework consists of four overarching HHS Secretarial priorities. The Action Plan further identifies five goals--each of which provides specific pragmatic strategies and high impact actions HHS will take to reduce health disparities among racial and ethnic minorities. Released simultaneously with and intended to complement the National Stakeholder Strategy, the Action Plan builds on national health disparities goals and objectives previously unveiled in Healthy People 2020.
4. Other
The U.S. Department of Health and Human Services has identified a number of opportunities to advance health disparity reduction activities at the department. According to HHS, these initiatives and prevention programs “present a unique opportunity to use innovative approaches to improve and change healthcare practices and policies across the public health system to sharply reduce disparities among racial and ethnic minority populations.” A significant advancement among these initiatives has been the release of Enhanced National Standards for Culturally and Linguistically Appropriate Services in Health Care (CLAS Standards). Building on the earlier standards, which provide certain mandates, guidelines, and recommendations for language *1209 access services, and based on tremendous growth in the field of cultural and linguistic competence since 2000, the OMH announced the enhanced National CLAS Standards on April 24, 2013. The enhanced CLAS Standards more broadly align with the HHS Action Plan and the National Stakeholder Strategy to advance health equity, improve quality, and help eliminate health care disparities by promoting the implementation of culturally and linguistically appropriate services by health care organizations and workers. Specifically, the Standards' conceptualization of culture, audience, health, and recipients was expanded to more broadly address the importance of cultural and linguistic competency “at every point of contact throughout the health care and health services continuum.” For instance, the original definition of “culture” was expanded from its previous terms of “racial, ethnic and linguistic groups” to also include “geographical, religious and spiritual, biological, and sociological characteristics,” and the term “health” was expanded from its implicit definition to the explicit inclusion of “physical, mental, social and spiritual well-being.”
The principal standard is to “[p]rovide effective, equitable, understandable, and respectful quality care and services that are responsive to the diverse cultural health beliefs and practices, preferred languages, health literacy, and other communication *1210 needs.” Fourteen related standards are divided among the general categories of (i) governance, leadership, and workforce; (ii) communication and language assistance; and (iii) engagement, continuous improvement, and accountability.
Although the enhanced CLAS Standards are guidelines, to date, “[a]t least six states have moved to mandate some form of cultural and linguistic competency for either all or a component of [their health care workforce].” One of these states strongly recommends cultural competence training, eight states currently have provisions under consideration, and cultural competency legislation either died in committee or was vetoed in six states. However, the enhanced Standards align closely with standards of the Hospital Accreditation Program of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), which provides voluntary accreditation of hospitals, ambulatory care centers, laboratories, nursing care facilities, and behavioral health centers.
C. Legal Challenges to the ACA that May Impact Health Disparities
Several hundred lawsuits have been filed challenging various provisions of the ACA and, at the time of this writing, around one hundred cases are currently making their way through the courts. Most notable with respect to health disparities is the landmark United States Supreme Court decision in National Federation of Independent Business v. Sebelius (NFIB), decided on June 28, 2012, and other ongoing litigation regarding premium subsidies *1211 provided as tax credits for individuals who purchase insurance on federally run exchanges.
1. National Federation of Independent Business v. Sebelius
In NFIB, the National Federation of Independent Business, joined by twenty-six Republican governors, challenged many provisions of the ACA, including the individual mandate and the requirement that states expand Medicaid or risk losing federal funding for their existing Medicaid programs. Although the Court held that the individual mandate is a permissible exercise of congressional taxing authority under Article I of the Constitution, it held that the federal government could not threaten the loss of existing Medicaid funding to incentivize states to participate in the Medicaid expansion.
As of August 24, 2014, twenty-seven states and the District of Columbia were implementing Medicaid expansion, twenty-one states opted out of Medicaid expansion under the ACA, and two states were in open debate regarding their plans. Five million uninsured people in the states that have not elected to opt into the expansion have fallen into a “coverage gap,” which has formed between those eligible under existing programs and those unable to obtain premium tax credits due to being at or below 100% of the federal poverty level (FPL). Notably, many of the states not *1212 expanding Medicaid are in the South where a disproportionately large number of poor blacks will experience a coverage gap. While twenty-nine percent of uninsured whites fall into this coverage gap, forty percent of uninsured blacks in non-expansion states will have very limited coverage options and are likely to remain uninsured. American Indians and Alaska Natives face a similar fate, since half of these Americans also live in non-expansion states. Moreover, because some American Indian tribal nations extend across states, “differing expansion decisions . . . will drive variations in coverage, access, and health status both within and between tribes.” Although Hispanic non-elderly adults were at the highest risk of being uninsured prior to the ACA, and twenty-four percent of Hispanics still fall into the coverage gap, the impact of Medicaid non-expansion on the Hispanic population is smaller since several key states that have large numbers of uninsured Hispanics (including California, New York, and Arizona) have implemented Medicaid expansion.
2. Availability of Subsidies on the Federal Exchanges
In another series of related cases, plaintiffs in several federal court districts challenged the federal government's legal authority to offer premium subsidies to citizens who purchase insurance on federally run exchanges. The plaintiffs in these cases relied on the language of section 36B of the Internal Revenue Code, enacted as part of the ACA, which makes tax credits available to individuals *1213 who purchase health insurance through exchanges “established by the State under section 1311” of the Act. The plaintiffs argue that the IRS's interpretation of section 36B to broadly allow tax credits to participants of both state run and federally run exchanges is inconsistent with the plain language of the law and, therefore, impermissible under the Administrative Procedure Act.
The U.S. District Court for the Eastern District of Oklahoma also ruled against the IRS interpretation in Pruitt v. Burwell. Similarly, in Halbig v. Burwell, a three judge panel of the D.C. District Court of Appeals ruled that the IRS misinterpreted section 36B, but the court has since vacated the panel judgment and granted the government's petition to rehear the case en banc. However, in King v. Burwell, the Fourth Circuit Court of Appeals found that the IRS's interpretation is permissible, but the United States Supreme Court has since granted the appellants' petition for writ of certiorari, ultimately leaving the issue to be decided by the high court. In both cases, it remains to be seen if the IRS interpretation stands.
While there is considerable speculation about the likely Supreme Court decision, one thing seems clear. The resolution of this issue has significant implications for the elimination of health disparities in the United States since--at the time of this writing--only seventeen states operate state-based exchanges, seven states partner with the federal government to operate exchanges, and twenty-seven states have opted to not operate exchanges, leaving individuals to rely on the federal exchange.
*1214 Without action to rectify these unintended consequences of the ACA, the United States seems likely, as one pair of authors put it, “to consign its poorest and most vulnerable residents to a continued tenuous health status, in which the only options for care are emergency rooms and those institutions that are willing to provide free or nearly free health services.”
D. International Response to the ACA
The United States prepared its most recent report to the U.N. Committee on the Elimination of Racial Discrimination (CERD) on June 12, 2013. In response to the report, CERD commended the adoption of the ACA, but expressed concern regarding the coverage gap created when many states with substantial numbers of racial and ethnic minorities opted out of the Medicaid expansion program, “thus failing to fully address racial disparities in access to affordable and quality health care.” Six years after its previous recommendations, CERD also reiterated its concern regarding “the persistence of racial disparities in the field of sexual and reproductive health, particularly with regard to the high maternal and infant mortality rates among African American communities.” Finally, CERD expressed a new concern regarding
the exclusion of undocumented immigrants and their children from coverage under the Affordable Care Act, as well as the limited coverage of undocumented immigrants and immigrants residing lawfully in the United States for less than five years by Medicaid and CHIP, resulting in difficulties for immigrants in accessing adequate health care.
