Thursday, August 7, 2014

Fifty Years After the Civil Rights Act: Celebrating the Latest Milestone on the Journey Toward Racial Equity in Health Care

By Professor Brietta Clark

Fifty years ago this July, President Lyndon B. Johnson signed into law the Civil Rights Act of 1964. The Civil Rights Act was viewed by many as a powerful symbol of the nation's commitment to racial equality. It was the most comprehensive civil rights law enacted up to that point - tackling discrimination in employment, education, voting, public accommodations, and federally funded programs, such as those financing health care. And although health care discrimination has not typically garnered as much attention as discrimination in other settings, inequality in health care was seen as a serious problem that the Civil Rights Act was needed to address.

People understood that good health was integral to one's ability to realize the other opportunities protected by the Act, such as finding employment, getting an education, and being an engaged citizen. In addition, discrimination in health care was pervasive and often had dire consequences. Many hospitals and physicians refused to treat Blacks because of their race; this included women in labor, patients with serious illnesses that could have debilitating effects, and even people in need of emergency, life-saving treatment. Indeed, civil rights leader Dr. Martin Luther King, Jr. is reported to have said that "Of all the forms of inequality, injustice in health care is the most shocking and inhumane."

Title VI of the Civil Rights Act, which prohibits discrimination on the basis of race, color, or national origin by recipients of federal funds, has been an important tool for fighting discrimination in health care. In theory, tying anti-discrimination protections to federal funding would give the government greater leverage to enforce Title VI against health care providers who wanted those funds. In reality, Title VI's power as an anti-discrimination tool depended on the federal government's willingness to devote significant resources to health care to ensure that this leverage existed.

And the government did this, just one year later in July 1965, when President Johnson signed legislation creating the Medicare and Medicaid programs. Medicare is the federal social insurance program that finances care for the aged and disabled. Medicaid is the joint federal-state insurance program for the very poor, and it initially covered only certain categories of the poor -- the disabled, children, and pregnant women. It did not take hospitals long to realize the value of these programs as a reimbursement source, and this gave the federal government the economic leverage it needed to force hospitals to adopt new policies prohibiting racial discrimination. In fact, it is Medicare and Medicaid, operating in conjunction with Title VI, which have been credited with bringing about the early reduction of racial disparities in health care access.
But progress has been limited. Although Title VI helped root out some of the most egregious and easily identifiable forms of intentional discrimination by health care facilities, racial disparities have persisted. And as important as Medicaid and Medicare were in helping to reduce disparities in access, they left significant holes in the safety net that have disproportionately impacted racial and ethnic minorities. For decades, the federal government has been criticized for designing narrow eligibility categories for Medicaid and Medicare based on arbitrary assumptions about which groups were "deserving" of federal help. This line-drawing left many people without insurance through no fault of their own. For example, the working poor tended to make too much to qualify for Medicaid, but they also tended to work in jobs that did not provide employment-based insurance. The individual insurance market was typically not a viable option because of the escalating costs of insurance in a largely unregulated market and because insurance companies could refuse to cover people they considered "high-risk."

While these barriers have affected people of all races, it should not be surprising that racial and ethnic minorities, especially Blacks and Latinos, have been at greater risk for falling through these gaps. The Kaiser Commission on Medicaid and the Uninsured reports that, as of 2011, 70% of Black workers and 79% of Hispanic workers were employed in blue-collar jobs that typically provided low wages and were less likely than white collar jobs to offer health insurance coverage. People of color have also been more likely to suffer from the kind of chronic medical conditions that make them high-risk to insurance companies. As a result, people of color have been disproportionately represented among the uninsured.

Title VI has been understood by courts primarily as a right to be free from intentional discrimination, not as guarantee of equal access to health care for everyone. Achieving health care equity, many have argued, would require creating a new legal right to health care that ensures access for everyone. How fitting, then, that as we celebrate the 50th anniversary of the Civil Rights Act, we are witnessing the most significant expansion of health care access and rights since the creation of Medicaid and Medicare. In 2010, President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) into law. The ACA is a massive health care reform package whose myriad legal reforms are being implemented in multiple phases over several years. But 2014 is a particularly noteworthy year because this is the year in which the two most significant pieces of reform - the public and private insurance expansions - are being rolled out.

The Medicaid expansion finally extends eligibility to include almost all adults whose income falls below a certain threshold; important eligibility restrictions on immigrants remain, however. The private insurance expansion depends on a system of insurance reforms and public subsidies that are designed to increase coverage in the individual insurance market. Under this new system, insurance companies can no longer refuse to cover people. In addition, the availability of public subsidies, in combination with rate regulation, is supposed to keep insurance affordable so that people with low and moderate incomes (up to 400% of the federal poverty level) are not priced out of the market. It was predicted that full implementation of these public and private expansions would reduce the number of uninsured by over 23 million people.

The Obama administration, health and civil rights advocates, and policy analysts have specifically touted the potential of these expansions to reduce racial and ethnic disparities in health care access. For the same reasons that people of color were at greater risk for being uninsured under the old system, they are likely to fall into the categories that would benefit from the expansion under the new system: the Kaiser Commission on Medicaid and the Uninsured reported that given the low incomes of uninsured Blacks and Latinos, nearly all of them (94% and 95%, respectively) would be eligible for the new Medicaid limit or for public subsidies to help them purchase insurance. And the latest enrollment survey from Kaiser confirms that the ACA is already making a difference: just over 60% of eligible Blacks and Latinos have gained coverage under the ACA.

The public and private insurance expansion occurring this year is momentous, yet there are several reasons why we should be cautiously optimistic about its potential to help achieve health care equity. First, the ACA does not create a universal health care system; its goal is to achieve "near-universal" coverage, but millions are expected to remain uninsured even with full implementation of the ACA. The uninsured are most likely to be immigrants who are not legal residents, people not required to buy insurance because it is deemed unaffordable, and individuals who choose to pay the tax penalty instead of buying insurance.

Second, legal challenges to the ACA threaten to undermine full implementation, exacerbating coverage gaps and access disparities. One of the most significant gaps in reform was created by the Supreme Court in its decision in National Federation of Independent Business v. Sebelius. The Court ruled that the federal government could not require states to expand Medicaid, effectively giving them a choice about whether or not to opt in to the expansion. So far, only twenty-six states have chosen to participate in the expansion, and a few others are exploring expansion alternatives. For states that have chosen not to expand, the traditional and narrow Medicaid eligibility categories apply. Another potential problem is occurring in states that have not created their own health exchanges to facilitate the private insurance expansion. Residents of these states must depend on the new federal health exchange to buy insurance, but current litigation by reform opponents alleges that public subsidies cannot be used to purchase insurance on the federal exchange. If they are successful, this means that insurance will not be affordable for the low and moderate income residents in these states.

Finally, even in states that have embraced public and private expansion, there have been problems in implementation that undermine the ACA's potential to reduce disparities. Some of the more well-known problems include the health exchange website glitches that made enrollment difficult initially, as well as inaccurate plan information that has undermined consumers' ability to make informed shopping decisions and eroded trust. But there has also been a problem with flawed outreach to limited-English speakers that has resulted in an underrepresentation of some ethnic groups otherwise eligible for Medicaid and public subsidies. This is true even in states like California, which has a significant population of limited-English speakers who are also relatively healthy and thus considered to be very desirable from a marketing perspective: exchange officials want to attract and enroll these groups through the state's health exchange (Covered California) because the exchange's success depends on robust enrollment by healthy consumers. Thus, many people were surprised to learn that early enrollment among Latinos was low due to marketing mistakes, poorly translated educational materials, a shortage of Spanish-speaking enrollment counselors, and a lack of paper applications in Spanish. These cultural and linguistic challenges seemed even greater for applicants whose primary language was not English or Spanish; although Covered California made information available in the thirteen most commonly spoken languages, many organizations reported running out of materials faster than Covered California could produce them.

These and many other enrollment challenges are documented in a report by the Greenlining Institute, titled Covered California's First Year: Strong Enrollment Numbers Mask Serious Gaps. The report concluded that cultural and linguistic differences remain one of Covered California's most pressing problems and that Covered California needs to improve outreach to diverse communities. California's experience presents an important cautionary tale about the promises of the ACA to achieve health equity -- one that other states and the federal government should heed as well.

The good news is that federal regulators and states are learning from their mistakes and working to correct these problems in order to achieve better and more equitable enrollment outcomes next time. Moreover, the federal government acknowledges that the problem of racial and ethnic disparities cannot be solved by merely expanding insurance. Many factors contribute to this problem, and federal regulators are taking a variety of steps to reduce health disparities through the ACA and other important initiatives. Even with the ACA, there is much left to do in order to achieve true racial and ethnic equality in health care. Still, as we reflect on the fifty-year journey toward health care equity since the Civil Rights Act, we should take a moment to celebrate this latest milestone.

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