- Samuel R. Bagenstos, May Hospitals Withhold Ventilators from COVID-19 Patients with Pre-Existing Disabilities? Notes on the Law and Ethics of Disability-Based Medical Rationing, 130 Yale L. J. Forum __ (forthcoming, 2020), available at SSRN.
- Deborah Hellman & Kate Nicholson, Rationing and Disability in a State of Crisis (Apr. 16, 2020), available at SSRN.
With the COVID-19 pandemic wreaking havoc in health care systems around the world, many jurisdictions have recently drafted or dusted off old clinical care triage protocols to facilitate decision-making when surges in infection rates overwhelm hospitals’ Intensive Care Units (ICUs). Not surprisingly, most of these policies reflect a utilitarian approach. Law and ethics policies generally endorse the notion that a pandemic or other large-scale threat to society requires efficient action by governments, which may involve a curtailing of individual rights. A growing chorus of academic commentators and human rights organizations have voiced concern that the focus on ‘saving the most lives’ embedded in triage policies, and particularly how these policies hope to achieve this, clashes with discrimination law, and particularly the rights of people with disabilities. Of a near-tsunami of blogs, op-eds, and commentaries in the legal, bioethics, and medical literature, forthcoming law articles by Samuel R. Bagenstos, and Deborah Hellman and Kate Nicholson stand out for how they discuss what the demands of equity imposed by discrimination law require, and how they each give us some idea of what accommodation in clinical triage protocol policies could look like.
Triage protocols are intended to solve the clash of commitments among physicians, when they are no longer able to give all patients the care they would normally feel duty-bound to provide. They introduce selection criteria for access to care (particularly ventilators, which I will focus on later), explicitly based on concepts of utility, fairness, proportionality, and reciprocity; and also decision-making procedures built around triage committees. Triage protocols deal with life and death decisions, or a least with who will receive an albeit limited chance of survival, since survival rates of those put on a ventilator for COVID19 appear troublingly low. The disability community has raised particular concerns about those protocols that mention specific disabilities as disqualifying conditions. These concerns flow from a historical experience with deprioritization and broad problems of equitable access to health care; concerns that have been heightened by the disproportionate impact of the pandemic. But even protocols claiming to be purely based on clinical prognoses and prediction of mortality have come under scrutiny because of their disproportionate impact on people with disabilities and other disadvantaged groups.
One of the key questions addressed in the emerging literature is whether, and to what extent, system and public interest-focused triage planning can be reconciled with the equal rights of people with disabilities. Most prominent has been a debate for the Yale Law Journal Forum between Samuel R. Bagenstos and Govind Persad. Both agree on some points: they reject quality of life assessments for triaging, and are concerned about biases and unsupported assumptions about people with disablities. But Persad supports broad triaging and accepts that some people with disabilties should be deprioritized based on ‘evidence-based’ assessments of likelihood of benefit. He argues that triage policies are the most efficient way to save more people, including more people with disabilities, as well as more overall “life years”; and that disability advocates should instead focus on reducing the scarcity of ventilators. Bagenstos supports only a limited form of triaging, namely exclusion of people who are unlikely to survive treatment, with other selection criteria such as random selection to prioritize all others.
Bagenstos’ discussion focuses on why the use of disabilities as a category for exclusion constitutes discrimination based on disability under the Americans with Disabilities Act and the Affordable Care Act. He starts with an analysis of the key legal requirements for a finding of discrimination: in order to be protected under the law, a person must fulfill the essential eligibility criteria for life-saving ventilation support (i.e. must be ‘qualified’ for this form of medical care). Bagenstos highlights the danger of deeming a “comparative ability to benefit” to be a proper qualification standard in triage policies if it excludes people with disabilities from accessing ventilators [based on calculations that their lives are ‘worth less’].
In this discussion, he points out how the restrictions imposed by disability law help counter the well-documented influence, in the provision of health care, of ‘outside’ (read ‘ableist’) views of the quality of life of people with disabilities. For Bagenstos, objective, well-documented medical evidence that a person with a disability will not benefit at all from receiving ventilator support can be the basis for a legally valid disqualification. He warns, however, that we should remain vigilant even when exclusions are based on medical facts, because distorted estimates of survival chances may insert bias into these ‘objective’ assessments. He therefore not only calls for a categorical rejection of specific disabilities as a sufficient basis for exclusion, but also pushes for procedural safeguards that protect against biased assessments. As a component of the duty to accommodate under discrimination law, he also suggests that “medical systems [should] take steps to ensure that those who are not qualified for life-saving treatments can become qualified.” Of further interest, Bagenstos situates the legitimacy of triage exclusions in the context of the broader goal of discrimination law: compensation for the challenges caused by underrepresentation of people with disabilities among health professionals who control the decision-making process, and for the barriers they face for full participation in democratic processes that shape our health care system.
In a paper focusing on policies that appear neutral (i.e: without any explicit disability-based exclusions), Deborah Hellman and Kate Nicholson go even further than Bagenstos. In Rationing and Disability in a State of Crisis, they conclude, albeit “cautiously,” that any policy that results in excluding people with disabilities from accessing life-saving care fails to satisfy the equity requirement embedded in anti-discrimination law. Like Bagenstos, they rightly situate the debate in the context of the broad purpose of anti-discrimination law, namely rectifying the structural inequities that are built into our society, including in the health care system. The paper stands out for its detailed comparison of the degree of incompatibility between four common rationing principles and the demands of equity that undergrid anti-discrimination law.
Hellman and Nicholson’s discussion of the historical use of ‘quality of life’ is interesting, but less important in this context. Few (if any) current pandemic triage policies put forward post-ventilation quality of life as a criterion for access, and rightly so, since the use of stereotypical ableist quality of life presumptions clearly runs counter to the core goal of anti-discrimination law. The three other key principles they consider (efficiency, probability of success, and life expectancy) are of greater relevance in the present context.
With respect to using life expectancy as a triage criterion, they acknowledge that there are ethical arguments in support of favoring young people over old (providing an opportunity for a full life; and giving the young a fair share of resources). But they rightly point out that policies allowing calculations based on life expectancy (so those that do not just favor young over old) will have a particular and disparate impact on people with disabilities, many of who have shorter life expectancy. A life-expectancy criterion is thus inherently suspect under anti-discrimination law.
Further to this, the authors argue that even efficiency and probability of success, the criteria with the most neutral associations to the core purpose of triaging (saving the most lives), are in tension with discrimination law. Of the two, probability of success of ventilation treatment in individual patients, which is expressed in percentages of survival chances, is most problematic for them because it involves a comparison of two persons who need to be treated as equals. Under anti-discrimination law, treating them as equals requires ensuring a disabled person (who, for example, might only have a 30% chance of survival, compared to another person with a 50% chance) an equal chance of access to a service that may save their life.
For Hellman and Nicholson, triaging based on efficiency is morally preferable because it does not amount to explicitly weighing the life of one person in need of care against another’s. For instance, efficiency aims to provide ventilator support to more people, by favoring those who are more likely to benefit quickly. Although both ultimately save more lives and are somewhat similar in outcome (and in my view overlap significantly—I still have difficulty disentangling the two in some practical examples, and I think they will most often be jointly used), efficiency is based on statistical numbers: how many will benefit, not which of the two people before us will most likely benefit. It thus constitutes a less direct disadvantage for people with disabilities. However, Hellman and Nicholson conclude that even efficiency-focused protocols risk running counter to the duty to accommodate that is embedded in discrimination law, for instance when they fail to take into consideration that people with a disability may require more time on a ventilator than a neutral efficiency-based time limit would allow.
Both the Hellman and Nicholson and Bagenstos papers recognize that discrimination law leaves room for some level of efficiency and practicality, though they seem to slightly disagree on how to balance these with the duty to accommodate. Both also discuss anti-discrimination law’s discomfort with broad categorizations, and its emphasis on the need for individualized assessments, which are needed to allow individuals to escape the statistics that would otherwise categorically exclude them from access to care. One particularly compelling aspect of their analysis lies in their emphasis that the approach of ‘saving more lives,’ embedded in triage policies, is fundamentally in tension with the ameliorative purpose of discrimination law. This is an implicit rebuttal to those who suggest that since more people with disabilities will benefit from efficient triage policies than be harmed, triaging focused on saving most lives is fundamentally compatible with anti-discrimination law. Indeed, the concept of equity embedded in discrimination law requires us to look beyond a mere utilitarian calculation of degree of benefit and numbers of people benefiting. They impose a duty to consider how to compensate for structural inequities in the first place.
But how far we can and should go with accommodation in relation to access to ventilators remains to be further explored. Are there other ways than the example Hellman and Nicholson give of permitting a person with disabilities more time on a ventilator if that will provide the person a fair chance of survival? When does accommodation become so unpractical that it really undermines the ability of the health care system to reasonably cope with a shortage? For instance, a recent paper in the medical literature makes an interesting suggestion to compensate for the broader background inequity in health care by “weighing triage scores with an area deprivation index that accounts for social determinants of health.” That would accommodate many people living in communities (particularly in large urban centers) that have been disproportionately affected by the pandemic, and seems to align with the demand for equity. Could there be a similar scale that accounts for the broader inequities that many people with disability face? Such a score could be part of an ameliorative scheme for people with disabilities that may compensate for the lower priority score on triage policies that they would otherwise receive. But do these suggestions not risk becoming so unpractical that they exceed what accommodation can require? Will they even be concretely implemented? In conversations I had with emergency physicians on the topic of pandemic triage protocols, the message was that if protocols become too complicated, physicians will find a way around them, particularly when the rubber hits the road. The authors of the papers discussed here appropriately emphasize that we have to accommodate people with disabilities, even within a context of pandemic triaging. But more work can and needs to be done in thinking about the concrete implementation of accommodation measures.
The papers discussed here will undoubtedly inspire those with a particular interest in disability rights and pandemic health care policies. But they should also be of interest to all those thinking about the relation between individual health rights and broader health systems planning.
Trudo Lemmens, Addressing the Tension between Discrimination Law and Pandemic Clinical Triage Protocols
, JOTWELL (July 8, 2020) (reviewing Samuel R. Bagenstos, May Hospitals Withhold Ventilators from COVID-19 Patients with Pre-Existing Disabilities? Notes on the Law and Ethics of Disability-Based Medical Rationing
, 130 Yale L. J. Forum
__ (2020); Deborah Hellman & Kate Nicholson, Rationing and Disability in a State of Crisis
, available at SSRN
Govind Persad, Expensive Patients, Reinsurance and the Future of Health Reform
, 69 Emory L.J.
__ (forthcoming, 2020), available on SSRN
We are in the midst of a health reinsurance “moment” right now. The idea of reinsurance, and in particular, government-sponsored reinsurance, rises to the fore in cycles, and our current rash of state-based reinsurance proposals signals that we’re in the ascendant phase. Reinsurance is at once a clever technocratic device but also a powerful conceptual frame. In the health context, government-sponsored reinsurance can take the form of a policy where the reinsurer, in this case the government, assumes the obligation to pay claims incurred by a given beneficiary once those claims exceed an annual attachment point. CMS has, for example, built in a de facto reinsurance policy for ACA plans, kicking in 60% of medical costs for any ACA plan enrollee who has incurred over a million dollars in claims. As you can see from this example, the primary insurers with this reinsurance protection are partially shielded from the risks of large catastrophic claims requiring excessive capitalization.
But government reinsurance also represents the distinctive structure of public-private power in our era. How is risk backstopped today, and under what conditions? When does an outcome count as catastrophic such that our existing risk management institutions cannot be expected to absorb it or hold reserves to meet it? Who gets a bail-out, and who must take the consequences of their bad bets? The question of who enjoys government reinsurance is a lens that helps us penetrate many of the mysteries of our current political situation.
Part of my engagement with the reinsurance moment is the pleasure I take in discovering interesting writing, past and present, on the subject of reinsurance. A new and enjoyable entrant in this category is Govind Persad’s new article, Expensive Patients, Reinsurance, and the Future of Health Care Reform, forthcoming in Emory Law Journal.
Persad’s article starts with what I think of as his signature concern, that of expensive medical care that threatens to burst the limits of our health care resources. He then threads his way through to reinsurance as the corresponding tool for both mustering funds for this expensive care while spreading costs in such a way as to keep us within the resource horizon.
What to do about those expenses is, Persad rightly argues, a normative question, rather than a matter of expedient technical design. Others have analyzed the technical virtues of reinsurance. Persad provides a tripartite framework for the normative analysis. He identifies three interlinked considerations for fairly addressing the costs of expensive patients: 1) the breadth of cost-spreading, across a larger or smaller risk pool 2) the bounded scope of the treatment whose costs are shared in this way, and 3) progressivity of the incidence of those shared costs. Persad contends that broad sharing is justified to counteract brute bad luck, but the scope of what is shared must be closely bounded under Dworkin’s “hypothetical prudent insurance” ideal to avoid unfair economic burdens especially upon those who suffer the brute bad luck of poverty. But he then observes that if the economic load of expensive care in this highly inequitable world could be arranged progressively, strict boundedness can be somewhat relaxed, since the wealthier can be justly asked to absorb much of the burden.
And a policy of progressively financed, government-sponsored reinsurance to backstop our various fragmented insurance pools is precisely the device that can achieve these three conditions at once: breadth of sharing and progressivity of economic contribution, thereby allowing a looser boundedness that frees us from painful decisions about withholding expensive care.
There is much I agree with and much I disagree with throughout the piece, which itself is teeming with fact and argument. Indeed, the density of ideas is what I most enjoyed about the piece—and reading it was like running my own thinking through a clarifying sieve.
Here are some things I agree with. Plaudits to Persad for pushing back on the tendency of reinsurance proponents to dismiss, or even invisibilize the burdens and trade-offs. Reinsurance lends itself to this kind of avoidance. It can seem like the proverbial free lunch where everyone eats and no one pays. Hence the focus on its technical virtues: reinsurance certainly benefits the high-cost patients to whom it is targeted, but it also makes insurance more affordable for low-cost, low-risk, and financially straitened patients in at least four ways. First, insofar as primary insurers cede certain catastrophic claims to the government, the state is injecting a public subsidy. Second, even if reinsurance were financed purely through insurer fees, reinsurance reduces the primary insurers’ risk, and thereby reduces their need to load on a risk premium. Third, primary insurers with reinsurance need not incur or pass-on the administrative costs associated with aggressive risk selection designed to avoid high-risk individuals. And, finally, to the extent that risk stabilization helps to, as John Jacobi describes it, “induce private plans to participate in precarious individual and small group markets,” this may foster price competition that exerts downward pressure on premiums.
But the headroom to be gained from reinsurance is not infinitely elastic and it is indisputable what Persad points out: “The imposition of small burdens on many in order to help a few greatly is contested in ethical theory, and its endorsement may rest on cognitive limitations in visualizing the magnitude of the population who experience the small burden.” Moreover, the spiraling expense of these treatments is not a given but a function of political will. As Persad says, “The number of patients with yearly claims over a million dollars rose by 87% from 2014 to 2017.”He pegs many of the expensive treatments as “halfway technologies,” incentivized by policies and exclusivities that misprioritize the targets of pharmaceutical development. How can extortionate pricing for this marginally valuable care justify financial burdens on every single enrollee or taxpayer? Yet the government, having created this covariate cost risk through its regulatory abdication, may through reinsurance simply pass-on the cost. I think of Colombia in the late 1990’s and early aughts, when pharmaceutical companies opportunistically sponsored patients with dire health needs, typically of higher socioeconomic status, to sue successfully for state coverage of treatments like the newest brand-name cancer drugs of marginal efficacy, while the public benefit package was strained to the point of excluding key preventive vaccines. Reinsurance is not immune to that dynamic, and we need vigilance on that front.
Assuming the greater upstream regulation that Persad proposes to curb misdirected technological development, I take a somewhat broader view of who benefits from reinsurance. The trade-offs to me are not so crisp, insofar as the “many” who bear small burdens also benefit from advantages of mutuality. These advantages are ones that prevailing methodological individualism sweeps behind its own cognitive limitations, behind the temptation to fetishize individual choices, despite Dworkin’s heroic attempts to correct for their inevitable short-termism and other biases. The “many” who bear the burden now can easily become the catastrophic “few,” as the Health Care Cost Institute clearly showed in the 2018 study Persad cites in the article’s first paragraph. But even supposing any one of us manages to run the entire gauntlet without brushing up against a medical cost catastrophe, all of us, in the meantime, benefit from the knowledge that those in our community do not suffer from avoidable pain or fear, as that pain or fear could just as well be ours.
Christina Ho, Our Reinsurance Moment
, JOTWELL (September 9, 2020) (reviewing Govind Persad, Expensive Patients, Reinsurance and the Future of Health Reform
, 69 Emory L.J.
__ (forthcoming, 2020)), http://health.jotwell.com/our-reinsurance-moment/
Research ethics governance will never be the most popular subject in health law, but its importance is hard to overestimate. A significant amount of scientific research involves human participants, whether directly (interviews, observations, or experiments on human subjects) or indirectly (use of human tissue or data). In the absence of such research, our knowledge of human health would be much worse, and so too would our individual lives and collective well-being. Medical progress is contingent on scientific research.
Before almost all forms research involving human participants can take place, though, investigators must submit their project to a committee for review on the basis of ethical soundness and compliance with rules, standards, and principles (found in laws, guidelines, and other regulatory instruments). This committee is known as a Research Ethics Committee (REC) in some countries, like the United Kingdom. In the United States, it is known as an Institutional Review Board (IRB), as the board is connected to a particular institution, be it a university, hospital, or private organization.
Sarah Babb, Professor of Sociology at Boston College, recently contributed to this niche area with a short, empirically informed monograph on IRBs in the United States, entitled Regulating Human Research: IRBs from Peer Review to Compliance Bureaucracy. Babb’s interest in the subject was sparked by her own time serving on Boston College’s IRB. As she writes, she was surprised to learn that she was expected to not only “apply” the classic “Belmont principles” of research ethics, but also to apply guidelines from the “Common Rule” on the regulation of human subjects research and from other sources:
Over time, I came to understand that the image of IRBs as committees charged with weighing ethical dilemmas captured the tip of a much larger iceberg of activities. I could see that there was a more routine form of regulatory decision making that was important, but not widely understood or even acknowledged. (P. 3.)
Her book makes a quick read (indeed, there are only 117 pages of text), and an enjoyable one.
Babb’s central thesis is that IRBs have transformed since the late 1990s from committees of peer reviewers – fellow academics making ethical judgements on the basis of scholarly expertise, but paying little attention to the letter of the regulations—to “compliance bureaucracies,” wherein full-time IRB administrators do much of the heavy lifting, often behind the scenes. Babb defines compliance bureaucracy as “a nongovernmental office that uses skilled staff—compliance professionals—to interpret, apply, and oversee adherence to government rules” (P. 5.) In this transformed governance environment, faculty board members still participate in terms of voting on whether to approve a project or expedited research protocols, but their work is simply not possible without IRB staff. This transformation, Babb argues, was due primarily to the growth in IRB scrutiny in the late 1990s by the Office for Human Research Protections (OHRP), which is situated in the federal Department of Health and Human Services. In turn, there was consequential growth in funding from research institutions to invest in IRB administration to better manage the risk associated with OHRP audits and enforcement actions. IRBs today are led not by peer reviewers, then, but rather a professionalized service of research administrators who know the nuances of IRB management. Babb’s case is summarized thusly:
…human research protection bureaucracies supplanted amateur IRBs both because they could make sense of the rules and because they were better equipped to manage the demands of auditable compliance. They could meet regulators’ demands for precisely recorded, auditable indicators, while addressing organizations’ need for efficacy, as compliance became increasingly intrusive and expensive. (P. 11.)
A second thesis that Babb advocates is that independent IRBs—IRBs disconnected from an academic institution and run for-profit – have proliferated in the last two decades, in large part due to two reasons: (1) the high cost now associated with running an IRB at an academic medical center or institution, and (2) the perceived high competence and fast turn-around time that private IRBs offer. Independent IRBs now review the majority of privately sponsored biomedical research, such as research sponsored by pharmaceutical companies). These independent IRBs have influenced the whole IRB apparatus in recent years, foremost those still situated at universities and at affiliated academic medical centers. The standards set by independent IRBs have spread by way of market competition, private accreditation, and the desire to adopt widely accepted best practices. There are plenty of concerns one may have about independent IRBs—and Babb does share her own concerns and acknowledges the benefits of a centralized government role in human research protections (as in the United Kingdom). Yet she rightly points out that a market-driven, privatized system can carry some advantages depending on legal and socio-political context. In the United States, a key advantage is that it can provide protections beyond the reach of antiregulatory politics, which are more pronounced than in almost any other country. As Babb writes, “In the case of our protections for human research subjects, it is important to clearly understand the imperfections—but also to acknowledge that our workaround framework is a great deal better than nothing. In this day and age, there is something to be said for that”. (P. 117.)
Babb’s central thesis is, on the whole, convincing. In large part, it is evidenced by the corpus of empirical data she has gathered through interviews over many years. I somewhat agree with her claim that this transformation is largely an example of the quirkiness of American governance, whereby in the absence of strong centralized government activity, governance is delegated (and strongly decentralized) to local, private actors, sometimes with specialized offices staffed by skilled workers. I would note, however, that professional staff have proliferated in other countries that have research ethics governance structures similar to the United States’, such as Canada, which has “Research Ethics Boards” (REBs) at local institutions. Based on my personal experience, these are also largely run and managed by full-time staff. Similar instances may also be found in other federal systems with decentralized research ethics governance structures, such as Australia.
While Babb may overplay the American-ness of the story, it remains the case that a transformation has indeed taken place in how IRBs function in the United States, and that the growth of independent IRBs, many of which lack adequate transparency and accountability, is cause for concern. Babb’s book makes for an interesting comparison to work done by ethics committees in other countries, such as the National Health Service RECs in the United Kingdom, which I recently investigated. I found that while professional staff are also crucial for the work that is done by NHS REC members, the members still very clearly play the central role. While I didn’t investigate the transformation question per se that is at the heart of Babb’s book, I would venture to say that there has been some shift over time in NHS RECs from peer review to a limited form of compliance bureaucracy, but it is not nearly as pronounced as it is in the United States. What is certainly the case, though, is that ethics committees should be seen as regulators in their own right.
In sum, Babb’s book is a welcome addition to the scholarship on research ethics governance. For those interested in this area of health law, it is a must-read.
Nelson Mandela has been quoted as saying “Resentment is like drinking poison and then hoping it will kill your enemies.” Jonathan Metzl’s 2019 book shows how the intersection of race, politics, and health in three states illustrates Mandela’s simile. Health law scholars concerned about health justice are familiar with research findings that the chronic stresses of living in a racist society contribute to poor health outcomes for people of color, particularly black people. But Metzl–a psychiatrist with a PhD in American Culture–reverses the lens and considers how entrenched racism affects white people. The book views white people not as objects of discrimination or even as perpetrators of racist actions, but rather as political actors whose racial anxieties leave them ripe for manipulation by political and corporate interests. It offers three case studies of how conservative GOP policy issues affect white population-level health. Specifically, Metzl explores how policies like loosening gun control laws (Missouri), rejecting the ACA’s Medicaid expansion (Tennessee), and drastically cutting taxes on corporations and the wealthy (Kansas) garnered popular support by implicitly or explicitly promising to protect the status of white people, a status perceived as threatened by progressive policies and an increasingly diverse society. What Metzl finds is that conservative political victories came at the steep cost of poorer health and rising death rates, both for the minority and immigrant communities who were their targets, but also for white supporters. He concludes: “white America’s investment in maintaining an imagined place atop a racial hierarchy–that is, an investment in a sense of whiteness–ironically harms the aggregate well-being of US whites as a demographic group, thereby making whiteness itself a negative health indicator.” (P. 9.) Hence the title, “Dying of Whiteness.”
Missouri is Metzl’s first stop. He explores how the state transformed from having relatively strict firearm registration laws to enacting some of the most expansive gun rights laws anywhere, including its so-called “guns everywhere” law. Some of the book’s most poignant moments come when Metzl talks with men and women who lost family members to suicide by gun. A consistent refrain in Metzl’s interviews was that guns and gun policies were not to blame for the lives lost. But as Metzl dives into and crunches the vital statistics regarding cause of death in Missouri, he finds that, while white Missourians may support permissive gun laws so they can protect themselves from dangerous “others,” the rate of white male gun suicides has skyrocketed. Some number crunching permits Metzl to calculate the cost, both in terms of financial costs and years of life lost, of the high white male suicide rate. (If you would like to hear more about this case study and are a AALS member, check out Sidney Watson’s excellent presentation (at 21:50) from the 2020 Annual Meeting.)
Metzl measures impact in Tennessee as well, estimating that the state’s “refusal to expand Medicaid cost every single white resident of the state 14.1 days of life.” (P. 13.) Using focus groups of men, Metzl tries to understand Tennessee’s transformation from “a Southern beacon for progressive approaches to health care for low-income people” (P. 133) to a Medicaid expansion holdout. Those focus groups revealed historically grounded and racially inflected negative responses to “government” among many white men, as well as a conviction that expanding Medicaid would mean having to pay for black people and immigrants. Ultimately, according to Metzl, having health care reform as a common enemy provided white men with beneficial group cohesion and an affirmation of the value of their whiteness, even as it deprived them of access to needed health care.
In Kansas Metzl examines the “backlash conservative takeover” of state government led by Gov. Sam Brownback, which featured massive tax cuts and budget cuts to shrink the role of government. This austerity regime’s impact on public education–once a gem in Kansas’ crown–is Metzl’s particular focus. He describes how school systems suffered and declined and how budget cuts amplified racial and economic inequities in public education. In this way and others, “[a]usterity codified hierarchy.” (P. 217.) Although health repercussions were less immediate than in Missouri and Tennessee, Metzl also examines increased high school dropout rates and studies demonstrating decreased life expectancy for persons without a high school degree to find long-term, “politically induced” (P. 258) health effects of education cuts for both black and white Kansans.
I recommend Dying of Whiteness to anyone interested in health law and policy, as it offers insights into voter behavior that, viewed from afar, may appear irrational. I’m white and I grew up in Tennessee, and reading the book gave me a richer appreciation of how perceived threats to white racial status and privilege fueled the State’s objectively self-defeating decision to reject the Medicaid expansion. Moreover, Metzl’s narrative exemplifies a “health in all policies” mindset and illustrates both direct and distal policy impacts on health. He reminds readers that “fancy upstream policy solutions” (P. 117) are likely to be ill fated as long as the cultural and political landscape fosters racial division and vilifies compromise. In this regard, Metzl seems to sing from the same page as others who argue that institutional and structural racism presents the fundamental impediment to adopting equitable health policies in the US.
I really liked this book for several additional reasons. For one thing, Metzl’s prose is lucid and vivid. I caught myself highlighting turns of phrase nearly as often as noting substantive points. (For example, “[o]vert religiosity and conservatism emerge in deep twang” from the Tennessee focus groups. (P. 144.)) In addition, beyond deploying statistical analyses to support his conclusions, Metzl delves into regional history and culture to help readers understand choices that might seem illogical to outsiders. For example, an extended examination of the racialized history of gun ownership rights and patterns offers insight into the cultural and symbolic meanings of guns in Missouri.
Finally, to my mind, Metzl achieves the delicate balance of portraying the regular people whom he interviews and interacts with respectfully, without being sympathetic to racist histories, structures, or sentiments. He’s willing to call out politicians who speak falsely, but he doesn’t belittle the voters who swallow those falsehoods. To be clear, Metzl identifies how the policies he describes negatively affect minorities and immigrants, but anyone who has been paying attention knows about those impacts. His real contribution lies in opening the reader’s eyes to how whiteness hurts white people materially and physically. If Dying of Whiteness has villains, they are not the white folks experiencing racial anxiety in a changing world. Rather, the villains are the politicians and corporate interests who play upon those anxieties to put in place self-serving policies that harm the very voters who support them. They promise greatness but deliver “a biology of demise.” (P. 281.) In the end, the book offers a cautionary tale of how attempts to preserve the privileges of whiteness end up harming everyone.
Political and social discourse is often characterized by an oppression Olympics. Which group, which characteristic, can assert that they are “more authentic, more oppressed, and thus more correct“? This dynamic appeared in full force during the Democratic primary. Was Pete Buttigieg more oppressed because of his homosexuality? Elizabeth Warren for being a woman? Kamala Harris for being a black woman? As a recent article by Khiara Bridges shows us, thinking about oppression in this way misses the nuance of how different forms of oppression intersect with one another. In Race, Pregnancy, and the Opioid Epidemic, Khiara Bridges weaves together some of today’s most perplexing issues.
Bridges begins with a puzzle. White privilege, as commonly understood, is supposed to promote the life outcomes of white individuals (and, conversely, undermine those of people of color). If that is the case, how can we explain the opioid crisis that has disproportionately undermined the life expectancy of white individuals? The problem can be stated more universally, beyond the opioid context: “[W]hen bad things happen to white people—when the jobs and the industries on which they once relied disappear, when their preferred university denies them admission, when they lose a promotion to a nonwhite candidate, when they die from suicide and drug overdoses at unprecedented rates—we are left to believe that white people experiencing these negative consequences did not have white privilege[.]” (P. 774.) Some might even argue that white privilege never existed to begin with. Perhaps other axes of oppression—sex or poverty—have more oppressive force than race.
Bridges uses the regulation, arrests, and prosecutions of pregnant people for the use of opioids to show how “white privilege is a double-edged sword.” (P. 775.) (She notes that because data collection in this context uses the category of “women,” she does too, although not just women become pregnant. I follow suit.) Bridges first sets up the paradox at the heart of the Article: she shows how white women—who putatively experience white privilege—are nevertheless the face of opioid punishment. Bridges begins by providing an overview of the opioid epidemic that has resulted in 400,000 overdose related deaths between 1999 and 2017. The face of the epidemic, she notes, is white, although the distribution of opioid deaths across race tracks the racial population of the American population as a whole. To my mind, such a framing is appropriate: while deaths are not racially disproportionate in purely numerical terms, they are disproportionate in terms of how economic, class—and race—privilege is distributed. Given the disproportionate capture of such privilege by white America, the fact that white individuals perish in proportion to their representation in the population as a whole is remarkable.
Bridges contrasts the treatment of the opioid epidemic with that of the crack-cocaine epidemic. If the opioid epidemic codes as white, crack cocaine was associated with black America. Scholars suggest that this differential coding resulted in unequal treatment: the opioid crisis is generally understood as a medical problem; white opioid addicts are victims who cannot help their fate. Black crack addicts, on the other hand, were demonized; the crack epidemic was the subject of criminal, not medical, intervention.
Pregnancy, however, is an exception to this general rule—unlike other opioid users, white pregnant women who use opioids are treated as criminals. Bridges documents how pregnancy has historically been the site of state intervention. Historically, although the evidence suggests that women of color and poor women do not disproportionately use substances during pregnancy, “prosecutions for substance use during pregnancy have tended to fall on the shoulders of black women.” (P. 820.) Between 1973 and 2005, before the opioid epidemic hit its stride, 52% of women arrested for substance abuse during pregnancy were black. Part of the racial disparity of these “first generation prosecutions” (P. 823) came from the higher rates of testing poor black women experienced, as Bridges’s body of work documents. It also developed as a result of state decisions about which substances would be criminalized. Bridges writes, “A number of … substances can harm fetuses…. the state’s choice to single out users of crack cocaine for criminal punishment, while ignoring users of the abundance of other substances that are unhealthy to fetuses, is a consequence of crack cocaine having been racialized as black.” (P. 819.)
The opioid epidemic, however, has resulted in a rash of “second generation prosecutions.” (P. 824.) Now, white women are being targeted at unprecedented rates, with white pregnant defendants prosecuted for substance use in South Carolina outnumbering black defendants 16:1 in 2014. Further, although state laws mostly criminalize only opioid possession, rather than opioid use, prosecutors have turned to other statutes to criminalize opioid-use-while-pregnant. Pregnancy thus expands white women’s criminal liability beyond that which non-pregnant opioid users would experience (to the extent they experience any criminal liability at all).
Herein lies the paradox: how could individuals with “white privilege” become the face of opioid prosecutions? How can one reconcile scholarship that treats crack prosecutions as a manifestation of racism and white privilege with the white face of opioid prosecutions?
As Bridges explains, the concept of white privilege has been problematized in the face of suffering among white individuals. Some scholars argue that only certain kinds of white individuals experience that privilege, or that white privilege may sometimes yield only intangible benefits. However, Bridges argues that white privilege is very much responsible for the coercion that poor pregnant white opioid users experience.
First, “white people are at times made vulnerable to disadvantage because they occupy a privileged social location.” (P. 828.) For example, some accounts suggest that “white people’s drug use is a result of their disappointment with their current social and financial condition—a disappointment produced by the belief that they were going to be better off,” (P. 827) in part, perhaps, because of their race. Minorities, who lack similar expectations, are therefore arguably less susceptible.
Next, Bridges points to the history of the eugenics movement. There, while white women who were “imagined to bear substandard genes” (P. 830) were subject to sterilization to protect the integrity of the white race, people of color—whose race was already inferior—were not. Similarly, in the opioid epidemic, she suggests, an overriding preoccupation of the well-being of white babies, undergirded by a preoccupation with preserving the “vitality of the white race,” (P. 832) drives prosecutions. Unlike the “crack babies” of the crack-cocaine epidemic, which commentators denounced as future burdens on the state, white babies in the opioid crisis are treated as sympathetic victims. Put simply, “[i]nasmuch as society prizes white procreation over its nonwhite complement, the higher esteem in which it is held has made white reproduction a site of particular interest to the state. This interest, in turn, has opened white people up to state violence—this time in the form of prosecutions for opioid use during pregnancy.” (P. 833.)
Third, Bridges points out, race is constructed. While the concept of “whiteness” at the founding of the nation was quite limited, over the centuries various ethnic groups (such as those of Irish and Polish descent) were incorporated as fully white members of society, to better draw the divisions against people of color. She suggests that “[t]he most radical interpretation of [opioid] prosecutions would be that they are about the desire to exclude from the white race a segment of people with a nominal claim to inclusion.” (P. 841.) I think this interpretation is perhaps too radical and sits uncomfortably with Bridges’s earlier suggestion—white pregnant women are disciplined precisely because of their membership in the white community. But Bridges’s overall point is well taken. Although she does not explicitly draw on expressive theories of law, I read Bridges as pointing to the expressive function of opioid prosecutions: chastising women who have “degraded” their “whiteness… functions to establish what whiteness really is. Whiteness is not poverty, criminality, substance dependence, or corrupted pregnancy.” (P. 843.) These prosecutions do the work of reinforcing race boundaries by policing those who transgress the boundaries of race. By being made “examples” of, pregnant white women prosecuted for using opioids are once more victims of the class privilege they putatively enjoy.
If on one hand white women are rendered vulnerable by white privilege, they are also made vulnerable because of black disadvantage. White pregnant women are not just white—they are also pregnant women. In that way, they share a social space with black women who experienced profound racial disadvantage in the crack cocaine context. Path dependence in that space damns white pregnant women as well: while opioid dependency is treated as a health problem, very differently from the crack cocaine epidemic, for pregnant women, “the racist prosecutions that took place during the crack cocaine scare might have normalized” punitive approaches. (P. 850.) “The result is the reduction of white privilege’s power to protect its holders from disadvantage.” (P. 850.) In this way, “sex and gender,” specifically in the context of reproduction and fetal welfare, “constrain the promises of white privilege.” (P. 847.)
Bridges’s seamless synthesis has broader implications, beyond the specific context she excavates. First, to my mind, it shows how discourses of power can provide cross-cutting support to each other. It is no accident that white supremacy uses as its sacrificial cautionary tales those who experience disadvantage because of gender and economic status. In shoring itself up, it also reinforces these other categories of oppression. This reinforces key insights of intersectionality theory and of activists on the ground who would discard an oppression Olympics metaphor for one of interlocking oppression.
Further, it offers insights for other ways in which discourses of power can often harm those who putatively benefit from them in other contexts. Scholars have noted how masculinity discourse can actually work to harm men; in various contexts, men who feel they have not lived up to the ideal that gender hierarchies expect of them exhibit behaviors that are problematic from a public health standpoint. They do not obtain required mental health support, and engage in substance abuse at higher rates. Indeed, gay men, who may feel less constrained by traditional gender roles, are more likely to seek out mental health care than straight men. Similarly, bisexual individuals, who some may assume occupy a higher status on the hierarchy of sexual orientation than lesbian and gay individuals, suffer far worse health outcomes than both gay or straight people. As scholars and practitioners incorporate understandings of social structure and injustice into healthcare, they must nuance their understanding of the roles we play with respect to the various discourses we occupy.
Cite as: Craig Konnoth, Intersectionality in the Opioid Crisis: Anti-Black Racism and White, Pregnant, Opioid Users
(May 12, 2020) (reviewing Khiara M. Bridges, Race, Privilege, and the Opioid Epidemic: White Privilege and the Criminalization of Opioid Use During Pregnancy
, 133 Harv. L. Rev.
770 (2020)), https://health.jotwell.com/intersectionality-in-the-opioid-crisis-anti-black-racism-and-white-pregnant-opioid-users/
There are many reasons to reject deductibles, co-payments, and other ways in which insured patients are expected to pay out-of-pocket when they receive health care. In particular, as former FDA Commissioner Scott Gottlieb has observed, “sick people aren’t supposed to be subsidizing the healthy.” But as Gottlieb recognized, that’s exactly what out-of-pocket payments entail. Unlike insurance premiums which spread the cost of health care across both healthy and sick, deductibles and co-payments are paid primarily by those who are sick.
In Exposed, Christopher Robertson discusses this flaw and the many other deficiencies in patient cost-sharing. As he documents, cost-sharing rests on misguided (though prominent) economic thinking, ignores key concerns of moral theory, and persists despite solid empirical evidence of its ineffectiveness. Designed to eliminate wasteful spending, cost-sharing often leads the sick to forego valuable health care. For example, one study found that doubling the co-payments for prescription drugs decreased medication use and increased emergency department visits and hospital stays for patients with diabetes or asthma. Similarly, when patients have high-deductible health plans, those with lower incomes reduce their emergency department visits not only for low-value care but also for high-value care.
Moreover, cost-sharing diverts attention from the real causes of high health care spending in the United States. As Robertson observes, whether one prefers Medicare-for-All, Obamacare 2.0, or greater reliance on market competition, patient cost-sharing can play at best only a marginal role in cost containment. Indeed, as he points out, it is easy to find low health care cost countries that do not employ patient cost-sharing as a cost containment strategy.
Health care costs are higher in the United States than in any other country not because American patients pay more visits to their doctors or have more hospitalizations. Actually, doctor visits and hospital stays are less frequent. As Robertson notes, the real health care cost drivers lie in (a) the monopoly power that health care providers possess and that allows them to charge high prices for their services, (b) inadequate information about the efficacy of many medical treatments, and (c) the financial interests of hospitals and physicians that encourage high-cost care rather than high-quality care.
There are many strengths to this book. Robertson delves into economic theory, moral theory, and the empirical evidence. He reviews a wide range of research on decision-making in general and in the context of health care in particular. He also provides an illuminating history of cost-sharing and the role that mainstream economics played in exaggerating concerns that when people carry health insurance, they will too quickly seek care. Rather, as indicated above, health insurance primarily makes it possible for people to afford care they need.
And even to the extent that insurance encourages overutilization, cost-sharing can’t solve that problem. As Robertson discusses, health care decisions are complex, require medical expertise, and are difficult to make prudently when experiencing the stress of illness. It is not surprising that efforts to make patients more careful shoppers for health care have come up short. In one study, patients could reduce their exposure to costs by comparing MRI prices online and choosing a lower cost provider. Less than one percent of the patients used the online information. The patients chose MRI providers based on their physicians’ recommendations.
While Robertson would prefer that cost-sharing be eliminated, he also suggests how cost-sharing can be improved as long as it is used. For example, insurers could expand existing practices that vary the amount of cost-sharing with the value of care. The Affordable Care Act already ensures that people can receive effective preventive care such as flu shots without any out-of-pocket payments. For other treatments, insurers could require minimal cost-sharing for highly-effective care and significant cost-sharing for care whose effectiveness is uncertain. Or reward patients for choosing lower-cost care that is equally or more effective compared to higher-cost care. Patients could be paid for choosing the lower-cost care or charged for choosing the higher-cost care. For example, greater use could be make of “reference pricing,” in which insurers reimburse at the level of the lower-cost providers, with the patient paying the difference when choosing a higher-cost provider.
Robertson also would vary cost-sharing based on a person’s income. Rather than imposing a $5,000 deductible on all policies, an insurer could peg the deductible at a percentage of the person’s income (e.g., 6 percent). Similarly, insurers could reduce co-payments for lower-income families and raise them for higher-income families. Tying out-of-pocket costs to income would respond to the problem of cost-sharing discouraging lower-income patients from seeking valuable care. It also would generally be simple to implement since most Americans receive their insurance from their employers.
Exposed provides a rigorous, comprehensive, and authoritative analysis of cost-sharing in health care. It really is an essential read for scholars, policymakers, and others interested in strategies for containing health care spending.
Mark A. Lemley, Lisa Larrimore Ouellette, and Rachel Sachs, The Medicare Innovation Subsidy
, N.Y.U. L. Rev. (forthcoming 2020), available at SSRN
Over the past few decades, policymakers have used Medicare reimbursement policy to achieve wide-ranging changes in the health care system. Recent efforts have focused on using the levers of Medicare payments to encourage innovation in providers’ organizational structures and health care delivery. In their forthcoming article The Medicare Innovation Subsidy, Lemley, Ouellette, and Sachs consider another type of innovation influenced by Medicare reimbursement – innovation in the pharmaceutical market.
Both the Trump Administration and members of Congress have put forth various proposals to address high prescription drug costs in the Medicare program. In addition, some Democrats have advanced health reform proposals that would broaden insurance coverage for prescription drugs and lower patients’ out-of-pocket drug spending. While debates over these proposals have largely focused on the policy goals of lowering prescription drug costs and increasing access, Lemley et al. argue that attention also should be given to how these proposals impact incentives for developing new drugs. Specifically, the authors argue that health insurance coverage changes market demand for prescription drugs, thereby impacting drug manufacturers’ profits and their financial incentives to innovate.
The U.S. has a long history of encouraging drug innovation through the patent system. Patent owners enjoy various legal rights that allow them to charge higher prices than they otherwise would garner in a competitive market with generic competitors. Accordingly, conventional wisdom predicts that drug policies lowering reimbursement rates below the supracompetitive prices patent holders could otherwise charge would reduce the returns for developing new drugs, thereby negatively impacting innovation. Indeed, one frequently hears this argument from the pharmaceutical industry. The authors, however, argue that this story is incomplete, as it overlooks how public subsidies funneled through the Medicare program increase incentives to innovate by expanding pharmaceutical companies’ profits.
After providing an overview of drug coverage under Medicare and other government programs in Part I of the article, Part II explains how Medicare increases innovation incentives for the pharmaceutical industry. As compared to a market without insurance, insurance coverage for prescription drugs shifts the demand curve for drugs by lowering consumers’ out-of-pocket costs. For example, a consumer with a 20 percent coinsurance obligation who is willing to pay $100 out-of-pocket for a drug can buy a $500 drug, as their insurer will cover the $400 difference. This increased demand not only leads to a larger volume of drugs sold, but also permits the monopolist-patent holder to charge a higher price to the insured consumers who can now pay more for their drugs. Consequently, adding a prescription drug benefit to Medicare (known as Part D) increased pharmaceutical companies’ profits through both higher volume and higher prices, with the additional profits creating incentives for further drug development. A number of empirical studies cited by the authors support this story, finding increases in private-sector investment in research and development (R&D) following implementation of Medicare Part D, especially for those drugs with higher Medicare market share. The authors refer to this as the Medicare innovation subsidy.
In Parts II.C and III, the authors discuss how recognition of the Medicare innovation subsidy changes the policy discussion about prescription drugs. For example, to the extent Medicare expansion would give more Americans access to generous drug benefits, policymakers wishing to keep overall innovation incentives unchanged can offset the increased Medicare innovation subsidy with reduced drug prices. Alternatively, policymakers can cut other innovation incentives, such as making patent laws less favorable to patent holders or lowering R&D tax incentives. Policymakers also should be mindful of the innovation asymmetries caused by Medicare and Medicaid reimbursement policies that make certain types of drugs more profitable than others. For example, Medicare rules that require Part D plans to cover all FDA-approved drugs within six protected drug classes has resulted in higher prices, and thus higher profits, for these drugs. The higher profits in turn have spurred a larger increase in new R&D for drugs in the protected classes relative to other drugs. Similarly, Medicaid cost-containment policies that lower Medicaid drug prices relative to Medicare drug prices can bias new R&D in favor of drugs that primarily benefit the elderly.
More broadly, in highlighting the interplay between patent law and Medicare policy, the article reminds us that Medicare policy does not exist in a vacuum; rather, policymakers should be mindful of Medicare’s far-reaching impact and its potential to change incentives throughout the health care system.
Nicole Huberfeld, Rural Health, Universality, and Legislative Targeting, 13 Harv. L. & Pol’y. Rev. 242 (2018).
Numerous challenges plague health care in America’s rural areas. These challenges, which manifest as health disparities and limitations on access, are worsening as rural hospitals continue to close across the country. As this is a problem particularly located in the American south (including in my home state), I was interested to read Rural Health, Universality, and Legislative Targeting by Nicole Huberfeld, one of the truly eminent scholars within health law, and an expert in rural health care, Medicaid, and the Affordable Care Act (ACA).
In the piece written for the Harvard Law & Policy Review, Huberfeld starts by documenting the health disparities that citizens living in rural America face—from lower rates of insurance coverage; to limited access to primary care; to higher rates of chronic diseases and poverty. After providing useful discussion about the definition of what it means to be “rural” and how spatial characteristics and population trends complicate and exacerbate rural health disparities, Huberfeld then skillfully weaves these data and trends into other data that reflect higher rates of deaths of despair, mental and public health challenges, and ultimately, differences amongst financial structures that negatively impact access to health care in rural areas. Coupled with lower employment and income, rural Americans exhibit higher uninsurance rates and lower rates of access to care. A detrimental feedback pattern develops, as these factors further negatively impact population health in these areas, which heightens the need for access to rural health care. In this section of the paper she provides a particularly salient example of the impact of access challenges on maternal health in rural America.
In the second part of her paper, Huberfeld contemplates the appropriate legal solution to the challenges facing rural health care. She observes that nearly ten years ago, the ACA stepped into the space, seeking to bring universal access to health care and health insurance for all Americans—including rural Americans. But, the Supreme Court’s decision in NFIB v. Sebelius allowed states to opt out of Medicaid expansion, a decision that has had a particular impact on health care access and delivery in rural states. Here she makes the argument that the resulting non-expansion states have been most resistant to the ACA’s universal approach and, instead, have sought to apply targeted legislative solutions to what ails their health care delivery systems, segmenting off pieces of health care access crises in their states in an attempt to deal with discrete, narrow solutions. She provides a number of examples of what she calls “targeted legislation to offset ACA resistance.”
Here Huberfeld skillfully places these attempts—to establish targeted solutions to the rural health care crisis while blocking the universal solution presented by the ACA—in broader political science literature, and particularly Professor Theda Skocpol’s work that argues that anti-poverty legislative interventions are most successful when “packaged so that they do not look like special care for the needy.” In essence, the argument goes, universal application of an anti-poverty regime adds to its durability, insulating it from legislative retrenchment. Examples include the Social Security Act and universal government benefits. Huberfeld cites to the vastly different durabilities and histories of Medicare and Medicaid to help make her point.
Relying on Skocpol’s work, Huberfeld then makes the central contribution of her paper, arguing that targeted interventions meant to improve rural health care and access may “have the effect of buffering rural disparities, but targeting without universalism holds limited promise both in theory and in practice.” Focusing on targeted approaches is unlikely to solve the problem of rural health disparities, she argues.
This piece was well-written and well-researched. It is a treasure of data for those who are seeking good information on rural health disparities. And it contributes a key insight. Indeed, Professor Huberfeld is the authority on Medicaid and rural health care within the United States, and her astute observation regarding the appropriate legislative solution should be heeded by state policymakers. In a time in which the rural health care crisis is worsening and rural hospitals continue to close, Huberfeld’s well-reasoned and well-articulated suggestions should be amplified from the academy to the statehouse.
Nir Eyal, Paul L. Romain, & Christopher Robertson, Can Rationing through Inconvenience Be Ethical?
48 Hastings Ctr. Rep.
10 (2018), available at SSRN
An unfortunate reality of all healthcare systems is that, left unchecked, demand for medical services will inevitably outpace available supply. On the one hand, there will almost always be one more intervention that might, at least in theory, improve a patient’s condition or avert a future harm. On the other hand, in a society with multiple urgent priorities—education, poverty reduction, and national defense to name just a few—devoting all available resources to health care is neither possible nor desirable. Moreover, some healthcare resources are finite in an absolute sense; for example, there are simply not enough transplantable organs for everyone in need.
In light of this conundrum, no matter how much the public tends to bristle at the concept of “rationing,” setting limits on access to health care is ultimately unavoidable. In a few situations, limit-setting mechanisms are explicit and transparent; examples include the national system for allocating transplantable organs, or insurers’ use of formularies to limit the cost of prescription drug coverage. Often, however, healthcare rationing occurs implicitly, with limited public scrutiny. Examples of implicit rationing include governmental decisions about which healthcare services to fund, or a healthcare professional’s judgment about whether to prescribe a particular drug or refer a patient to a hospital.
In a provocative and thoughtful article, Can Rationing through Inconvenience Be Ethical, Nir Eyal, Paul Romain, and Christopher Robertson consider a critical, but often overlooked, form of implicit rationing—the use of “burdensome arrangements” such as “application processes, forms, waiting periods, and the like,” that make accessing health care inconvenient. To the extent “rationing through inconvenience” has received attention, they note, it has typically been to condemn it. At best, it is considered a waste of time and energy; at worst, it is attacked as a harmful barrier to care. However, they argue that, “under certain conditions, rationing through inconvenience may turn out to serve as a legitimate and even a preferable tool for rationing,” as compared to other available alternatives. (P. 11.)
For purposes of their analysis, Eyal et al. define “rationing through inconvenience” as “a nonfinancial burden (the inconvenience) that is either intended to cause or has the effect of causing patients or clinicians to choose an option for health-related consumption that is preferred by the health system for its fairness, efficiency, or other distributive desiderata beyond assisting the immediate patient.” (Id.) In other words, their focus is on barriers that have the effect of nudging patients to make socially desirable choices, as opposed to barriers that are imposed for other reasons, such as to increase profits for third-party payors. They identify six considerations relevant to assessing the advantages and drawbacks of these measures.
First, they note that, like other forms of indirect rationing, rationing through inconvenience preserves patient choice. No one is denied care entirely, but a patient seeking a rationed service can access it only if she (and/or her provider) is willing to jump through various hoops. One advantage of this approach is that, “[p]atients who perceive the greatest benefits from a treatment” are more likely to be willing to undergo the burdens associated with obtaining it. “By separating individuals who are willing to accept inconvenience to procure a good or service from ones who are not,” they argue, “rationing through inconvenience gathers that information and applies it to personalize rationing policy.” (P. 14.)
Second, they argue that rationing through inconvenience may be less regressive than relying on financial incentives, such as cost-sharing mechanisms, because all people, regardless of income level, “have twenty-four hours in a day, a limited attention span, and a body that can be in only one place at a time.” (P. 15.) They recognize, however, that rationing through inconvenience can sometimes impose disproportionate burdens on disadvantaged populations, as a result of factors like limited paid medical leave, inadequate transportation, or lack of access to nearby care facilities. In light of this potential, they call for “[f]ormal, periodic assessments” to evaluate the impact of particular strategies on different populations, as well as the use of “ameliorative measures” to reduce any disparities found. (P. 16.) For example, they suggest that, in some cases, adverse impacts on disadvantaged populations might be ameliorated by “maintain[ing] a plurality of optional inconveniences—stand in a long line or fill out a long form, for example.” (Id.)
The third consideration they address is largely a negative one—the fact that inconvenience, perhaps by definition, involves wasted time and effort. This waste is incurred not only by the patient but also, in some cases, by health care professionals, who may need to divert attention away from other patients to satisfy procedural requirements (for example, completing prior authorization requests). The impact of inconveniences on health care providers also can give rise to a conflict of interest, as physicians may recommend against treatments that involve significant burdens for them.
Fourth, the authors suggest that rationing through inconvenience often has the advantage of being highly salient to patients. Unlike costs, which “are often opaque to the patient,” inconveniences such as waiting in line and filling out forms are painfully obvious to those who experience them. They point out, however, that inconveniences are not always apparent in advance; moreover, the salience of inconvenience “is a double-edged sword” because it can lead to the underuse of necessary services and “it can also make rational priority setting less acceptable to the public.” (P. 18.)
Fifth, they suggest that rationing through inconvenience is arguably preferable to rationing through cost because it avoids “put[ting] a price on people’s bodies, or health, or on professional integrity.” (Id.) On the other hand, they note that rationing through inconvenience raises other concerns about respect for persons: “Mobilizing our aversions to standing in line, to listening to annoying muzak on the phone, and jumping out of bed earlier exploit our bodily vulnerability to inconvenience—or our psychological and physical need for comfort.” (Id.) The significance of these concerns, however, depends on the extent of the inconveniences involved.
Finally, they argue that, because “the deliberate imposition of inconvenience may be outrageous to the public,” efforts to ration through inconvenience may often be adopted on a less-than-transparent basis. For example, a public hospital may simply “fail to invest in added resources that would have alleviated long waits for a certain service,” without any opportunity for public scrutiny. (P. 19.) On the one hand, they suggest that this lack of transparency is arguably a significant ethical problem. On the other hand, “some obliqueness in resource allocation” may be necessary in a society where rationing, although inevitable, “remains hopelessly unpopular.” (Id.)
In conclusion, the authors suggest several areas for future research on the effects of rationing through inconvenience. For example, what types of rationing through inconvenience is already in use? When do these mechanisms actually lead patients and clinicians to make more socially desirable choices about health care? How can the disutility associated with these mechanisms be measured? What are the effects of these mechanisms on individual and population health?
By bringing attention to the common, but under-explored mechanism of rationing through inconvenience, this article is an important addition to the literature on health care prioritization. The authors’ careful analysis persuasively demonstrates that inconvenience can be a useful mechanism for allocating limited resources, and that in some cases it may be superior to other methods currently in use. However, it also shows that, like co-payments and other financial disincentives, imposing costs in the form of time and effort can also have a downside. Ideally, once armed with the research data Eyal et al. have called for, policy makers will be better equipped to strategically use inconvenience to achieve socially desirable goals.
Erin C. Fuse Brown & Elizabeth Y. McCuskey, Federalism, ERISA, and State Single-Payer Health Care
, 168 U. Pa. L. Rev.
____ (forthcoming 2020), available at SSRN
My first job out of law school was for then-Congressman John F. Tierney, who represented the North Shore of Massachusetts. John Tierney believed in single-payer health care. He also believed in states as laboratories of democracy, and wanted to make sure Massachusetts had the latitude to undertake health reform and establish a model of universal health care for the nation. I was hired to write a bill that could accomplish that vision. Perhaps realizing that I was going to be overmatched, Tierney asked me—as my very first duty, even before I was officially on payroll—to meet with Rashi Fein, the “father of Medicare.” The one detail I remember from that meeting was that Rashi warned I would need to write an ERISA waiver. I was terrified. I had just finished taking my last law school exam, commencement was still a few days away, and quite frankly, I had muddled my way through ERISA preemption in school without ever really understanding it. Consequently, my handiwork, H.R. 4412 for the 107th Congress, was a bit, shall we say, rough.
I feel a special appreciation now, two decades later, when I read Erin Fuse Brown and Elizabeth McCuskey’s article, Federalism, ERISA, and State Single-Payer Health Care, giving the issue of ERISA preemption the masterful treatment it deserves. In the interim, the political gyre has turned one complete revolution, through Massachusetts’ success in modeling health reform and the nation’s subsequent adoption of that model, to unrelenting Republican efforts to tear down the Affordable Care Act (ACA), leading us once again to serious consideration of state-based single-payer health care in otherwise dark times. Rep. Ro Khanna has even introduced a next-generation version of the Tierney bill.
The Fuse Brown-McCuskey article manages to accomplish so many important things in one neat package. First, it surveys all of the single-payer bills that have been introduced across the 50 states and identifies three characteristic mechanisms featured by these proposals. These three mechanisms are identified as Type A payroll taxes, Type B provider restrictions, and Type C subrogation/secondary payer mechanisms. Already, this article is a gift for health law scholars. Second, it calls out and analyzes the fundamental legal vulnerability that shapes the fate of these proposals: ERISA preemption. I’m sure I’m not the only one who feels enormous gratitude that someone out there performed this task so that I don’t have to hurt my brain beating it against the painful body of ERISA jurisprudence. As if it were the Energizer Bunny of all law review articles, it’s still not done—after that, the article cleanly and elegantly draws out specific proposals (including an ERISA waiver!) that would clear a path forward. Along the way, Fuse Brown and McCuskey include granular historical detail about these proposals and specific legislative language that they are already promoting with the National Council of Insurance Legislators.
This article is ostensibly about state single-payer health care and ERISA, and that is more than enough to furnish a rich, rewarding read. But the articles that we return to repeatedly are the ones with implications that keep radiating outward, beyond their topical focus, recontextualizing a whole range of other issues. The authors elaborate the implications of their findings for the broader federalism conversation, but this doesn’t do justice to the many nuggets of insight they embed throughout the piece on the history of U.S. health reform, statutory interpretation, interagency collaboration, the politics of pay-or-play, the history of Hawaii’s ERISA exception, the relation between cost of capital and employer decisions to self-fund, and so much more.
Moreover, the article has implications for the health reform debate taking place at the national level during this Presidential election season. One aspect of the early Democratic primary debate has been the frustrating specter of single-payer purists attacking the public option proponents as neoliberal shills, while in return, the ACA 2.0 crowd demonizes the Medicare-for-All proposal as tax-and-spend socialism. It is distressing to watch when we all know that the real enemy is the right-wing project of shredding the ACA and all its hard-won health gains.
The state-based conversation revealed by Fuse Brown and McCuskey demonstrates just how the division among primary candidates is overdrawn, as I’ve also argued elsewhere. The state bills that their article examines are recognizably single-payer proposals, but if judged by the rigid skirmish lines of the presidential campaign discourse, many of them might not qualify as such. First of all, the authors concede that many of the state plans seem to expect and even plan for the persistence of private employer-based plans. State single-payer bills thereby straddle the line between Medicare-for-All and Medicare-for-America, the plan that anchors public option proposals such as the ones Kamala Harris and Beto O’Rourke have championed on the campaign trail. Yet the Medicare-for-America public option plan, like these state single-payer bills, employs the single-payer hallmarks of Type A income and payroll taxes, as well as stringent nonduplication and Type B provider restrictions. To illustrate, the Type B provider restrictions in Medicare-for-America stipulate that no participating providers can direct-bill individuals eligible for the public plan for any coverable services, nor may they bill any more than the prescribed rates. If providers elect not to participate in the public plan, they are then barred from re-joining for two years afterward. Some public option plans, then, are demonstrably intended to put us on the glide path to single payer.
Fuse Brown and McCuskey prompt an important discussion and I am eager to hear more. For instance, I’d love to hear the back-room history of who pushed the Type C subrogation/assignment feature, and how it propagated among state actors. For the uninitiated, these features are designed to help funnel money into the “single” payer, even when employer-sponsored coverage and other private plans persist. They do so by giving the single-payer the right to pay first for the service, and then recoup the money for that service collaterally from the private plans that would have covered that benefit otherwise. I’m not convinced that it is much likelier to survive preemption than pay-or-play, nor would it necessarily capture that much employer funding, especially as compared to a payroll tax, since under subrogation, employers could just drop coverage or revert to a wraparound plan, only covering items that the single-payer plan does not. Moreover, employers could easily side-step their collateral payment obligations by including an anti-subrogation term in their plans (whose prohibition among the self-funded plans would certainly be preempted).
Instead, I kept expecting that payment reform would figure more prominently in these state single-payer bills, especially since payment reform constitutes a big part of why we would want single-payer in the first place. Perhaps the bills do discuss global budgets and the article, which is already chock-full of fascinating detail, simply could not fit it in. Certainly, we get a whiff of all-payer rate setting around the margins of the discussion here. Perhaps what states need is a broadened policy discussion that fosters further evolution of these interesting state proposals. Fuse Brown and McCuskey have laid down a strong marker for this kind of polyglot conversation, one that spans state AND federal domains, that involves practitioners AND academics, that draws from the economics AND politico-legal discourses. Here’s hoping that this article proves as fruitful in generating further scholarship as it is excellent in its own right.
Cite as: Christina Ho, State Single-Payer
(December 3, 2019) (reviewing Erin C. Fuse Brown & Elizabeth Y. McCuskey, Federalism, ERISA, and State Single-Payer Health Care
, 168 U. Pa. L. Rev.
____ (forthcoming 2020), available at SSRN), https://health.jotwell.com/state-single-payer/