Abstract
Excerpted From: Wendy Netter Epstein, The Health Equity Mandate, 9 Journal of Law & the Biosciences 1 (January-June, 2022) (370 Footnotes) (Full Document)
The pandemic has brought into sharp focus a reality that has long been true-- health inequity in the USA is tragic and trending in the wrong direction. Life expectancy varies considerably by wealth and geography. In some affluent counties, a person lives on average 20 years longer than in comparable poor counties. Life expectancy also varies starkly by skin color and education.
Even before the pandemic, other metrics were similarly troubling. Black Americans were more likely to have multiple chronic illnesses than White Americans. Racial and ethnic disparities in maternal and child health outcomes were significant, with Black women three times more likely to die of pregnancy-related causes than White women. And Black infants were twice as likely to die as White infants.
The pandemic has further illustrated the consequences of these pre-existing inequities. Black Americans have contracted COVID-19 at three times the rate of White Americans. Adjusted for age, Pacific Islanders, Latinos, Blacks, and Indigenous people are all more than twice as likely to die of COVID than White and Asian people. There is nothing about the mechanism of the virus that causes these disparate results.
These inequities are a moral wrong--under any theory of morality. But health inequity is not just a social justice issue. It is also an economic one. Eliminating race-based health disparities would save $230 billion in direct medical expenditures and more than $1 trillion in indirect costs.
The causes of health inequity are complicated. Policy focus has centered squarely on differences in access to care--the actual ability to see a doctor for diagnosis and treatment. But while access to quality healthcare is an important part of the puzzle, fixing access to care will not solve health inequity.
The Affordable Care Act proves the point. The only major, coordinated health policy initiative in the last decade, it was primarily designed to increase access to hospitals and practitioners by expanding eligibility for Medicaid and creating subsidized private insurance. While it did significantly reduce the number of uninsured Americans, and notably helped nearly three million Black Americans gain health insurance coverage, health inequity has persisted.
Instead, there is nearly uniform agreement from those who study the health equity problem: it takes root long before people get sick. Good health has more to do with safe housing, access to healthy food, environmental factors, and so forth--the social determinants of health. Structural inequities cause disparate experiences with these social determinants of health, which then drive health inequity. In fact, studies have shown that social determinants may account for 80-90 per cent of the modifiable contributors to healthy outcomes.
Policymakers have known for decades that social determinants drive health inequity. Nonetheless, only limited progress has been made.
It is not hard to see why the problem has proven so intractable. In a highly fragmented healthcare system, no one actor--not the government, not payers, and not providers--has both adequate incentive and adequate wherewithal to address social determinants.
Private payers, motivated by profit maximization, make decisions to increase revenue and decrease cost. Economically rational payers will invest in social determinants of health if the savings in claims costs resulting from the investment exceed the cost of the investment. But with churn between plans and high rates of Medicaid coverage and uninsurance in the most at-risk populations (rather than coverage by private payers), it is hard and maybe impossible for any individual private insurer to prove the value proposition. Not surprisingly, private insurance has historically focused on reimbursing for the provision of clinical healthcare, narrowly defined, and has not reimbursed for mold remediation in an asthmatic's apartment or for the delivery of healthy food to a diabetic living in a food desert.
Government payers have more motivation to address the problem, as healthier Americans mean fewer who require government subsidy or Medicaid coverage. Yet the nation's public health system is chronically underfunded. And the compartmentalized government infrastructure has historically meant that health funding is siloed. Medicare, for instance, does not typically spend funds on addressing housing crises, even if housing is a key driver of health outcomes. Additionally, the federal government has insufficient means of coordinating efforts with local entities that can tailor interventions to the unique needs of each community.
Finally, although much faith has been put in providers--who have perhaps the best sense of patient needs--to drive health equity improvements, their efforts also have important limitations. Providers are trained to provide clinical care and not to address the social determinants of health. They cannot adopt and create public health policies. And particularly now, as the world is fighting COVID-19, providers are facing unprecedented financial and other pressures.
This is not to say that health inequity is being ignored by the industry. Efforts to address social determinants of health are being made by the government, payers, and providers, particularly in recent years. Still, these efforts continue to fall short of what is needed.
Even a move to a system of universal coverage--while impactful--would not be enough to fix the problem. Social determinants have a larger impact on health outcomes than the care provided once people become sick. A new regulatory approach to addressing health equity must therefore look beyond just the healthcare system. It will require collaboration not only among industry actors but also outside the healthcare system--to improve housing and access to education, infrastructure, poverty, and the environment.
This article finds inspiration in the principles of democratic experimentalism and the related approaches of cooperative federalism and adaptive management. It draws specific lessons from two ongoing regulatory experiments that provide instructive analogies--the health industry's experience with HIPAA and environmental regulators' use of the Clean Air Act.
Democratic experimentalism addresses the 'master problem of organizing decentralized, collaborative design and development under conditions of volatility and diversity.’ It envisions an important role for the federal government in goal-setting and coordination, but an equally if not more important role for autonomy to be given to local units to experiment and share knowledge with others facing similar problems. Relatedly, the hallmark of cooperative federalism is a flexible relationship between the federal and state governments, where the federal government sets policy goals and often provides funding but leaves implementation flexibility to the states. Adaptive management focuses on the need for continuous learning and adjustment in policy implementation in response to data collection.
HIPAA, in key respects, is a democratic experimentalism success story. Today, HIPAA is known mostly for its standards on privacy and security. But HIPAA also addressed another entrenched health industry problem: fragmented technology infrastructure. Lack of standardization meant billions of dollars in unnecessary inefficiency costs for the industry and high rates of error. The industry could not seem to address the problem itself, in part because of the sheer complexity of the problem, but also because it could not solve the collective action problem.
These hurdles were largely (although not perfectly) overcome, with a combination of top-down regulation and bottom-up collaboration. The HIPAA statute created a binding legal mandate that lit the fire for change. And HIPAA collaboratives--where covered entities voluntarily chose to work together to implement the HIPAA mandate--figured out best practices for implementing the new legal requirements.
Environmental regulatory approaches are illustrative of similar principles. For instance, with the Clean Air Act, the federal government sets air quality standards and then gives responsibility to the states to develop their own implementation plans, reserving the authority to step in and implement a federal plan if state governments fall short. The federal government also provides funding and takes an active role in reviewing, amending, and approving plans. This regulatory regime--an example of cooperative federalism-- enables state and local solutions to vary according to differing circumstances but also promotes learning at the federal level.
These examples suggest a regulatory regime with the promise of addressing health inequity--a federal mandate that requires states achieve certain metrics of health equity or face civil monetary penalties and federal funding to spur collaboration between federal and local, public and private entities. A model like this could be applied to many health industry problems. The recent experience with a failed COVID vaccine distribution bears some similar hallmarks. It also could have been vastly improved with standard-setting and funding from the federal government that left states room to make adjustments for local circumstances.
Part I of this article describes the health inequity problem and its complicated causes. It focuses on the large role that social determinants of health play in creating disparities in health outcomes. Given the widespread recognition that social determinants of health are a key driver of health inequity, Part II then describes efforts by key health industry players (state and federal government, private payers, providers, and charities) to address social determinants. But it also explores why current mechanisms are insufficient, with particular focus on the structural impediments to success and the need to look beyond the confines of the healthcare system. Part III introduces the theory of democratic experimentalism and related regulatory approaches. It then explores two examples of those regulatory approaches in action: HIPAA collaboratives and environmental regulations. Finally, Part IV concludes with the promise of a mandate-driven, funded, collaborative, public-private model to address social determinants of health.
Fixing the health inequity problem in the USA is both a moral and a financial imperative. Success could mean saving millions of lives and billions of dollars.
[. . .]
Health inequity must be addressed. There is wide agreement on this point. And yet health reform efforts have focused on improving access and not health inequity. Remediating health inequity requires coordination across public and private, local to federal, and health sector to housing to the environment. It requires combatting racism, and it requires considerable funding.
As daunting as the task is, it must be done. Millions of lives depend on it. And the economy, to the tune of $230 billion, depends on it. Slow progress with little to show in terms of results must give way to something better.
This article made the case for what that better approach is. Drawing parallels to HIPAA's successful use of a federal legal mandate and collaboratives, and the Clean Air Act's use of cooperative federalism, it argued for a comparable approach to achieving health equity.
The paradigm must include a formal legal mandate that defines achievable outcomes, sets deadlines, includes sanctions for non-compliance, and incorporates a mechanism for funding. But there is also an essential role for more informal mechanisms--the work of collaboratives, which will experiment and network and bootstrap their successes and failures.
Health inequities are worsening, spurred in part by the effects of the pandemic. Narrowing the chasm will not be easy. But a mandate that catalyzes a collaborative, data-driven approach is the path forward.
Professor of Law, DePaul University College of Law and Associate Dean of Research and Faculty Professional Development, Jaharis Health Law Institute. E-mail:
