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/
Angela P. Harris & Aysha Pamukcu, The New Civil Rights of Health: A New Approach to Challenging Structural Inequality
, 66 UCLA L. Rev.
__ (forthcoming 2019), available at SSRN
As of 2018, health disparities cost the U.S. $93 billion in excess medical costs and $42 billion in lost productivity per year. Since 1985, the federal government has recognized that there are health disparities, yet research and programs addressing these problems have focused on individual choice, ignoring the significance of structural inequality. Even when the government announced that health disparities were caused by the social determinants of health (SDOH), which are outside an individual’s control, it focused on solutions concerning individual choice. In The New Civil Rights of Health, Professor Angela Harris and Aysha Pamukcu argue that in order to address health disparities, we must understand that individual choice is limited by structural inequalities caused by subordination, “a set of policies, practices, traditions, norms, definitions, cultural stories, and explanations that function to systematically hold down one social group to the benefit of another social group.”
Subordination, particularly racial subordination, limits individual choice and control over access to health-promoting opportunities and resources. To address subordination and end health disparities, the authors suggest a partnership between public health advocates trying to address the SDOH and civil rights advocates trying to address structural inequality. Building on the work of other public health and critical race scholars, Harris and Pamukcu discuss the limitations of public health and civil rights laws to address subordination and propose a new “civil rights of health” that builds on the “health justice framework” to address subordination, which leads to health disparities. By adopting this new “civil rights of health,” advocates can help educate policymakers and the public about the health effects of subordination, create new legal tools for challenging subordination, and ultimately reduce or eliminate unjust health disparities.
The article is significant because it not only emphasizes how subordination impacts population health, but also how subordination influences assumptions, methods, and research priorities in public health. The authors note that although public health advocates understand that social context (e.g., unequal access to housing, education, and employment) limits individuals’ health-promoting opportunities and resources, most advocates ignore the impact of subordination on individual choice. For example, although the overall prevalence of cigarette smoking in the U.S. has declined significantly, use has not declined by racial minorities and the poor. This is in part because of subordination. Due to governmental policies and practices, tobacco retailers are disproportionately placed in low-income and racial minority communities, tobacco companies systematically target people of color in marketing campaigns, and the government collects increased taxes from these communities for cigarette purchases. This allows the government and tobacco retailers and companies to make money, while systematically holding down the poor and racial minorities. Obscuring the impact of these subordination policies and practices, most public health research studying on continued disparities in smoking often focuses only on individual choice in the research question, design, and conclusions.
After making the case that public health has limitations, the authors highlight the limits of current civil rights law to address subordination. Recently, Hahn, Truman, and Williams have shown that when the government enforces civil rights laws to address racial discrimination in healthcare, employment, and housing, racial health disparities decrease. Yet, there are several limitations in using civil rights laws to address all of the subordination that causes health disparities. First, civil rights laws do not protect all groups against discrimination, e.g., the poor. Second, the laws only provide “negative rights’ (the right to be left alone by government), not “positive rights” (governmental obligations for its citizens). Third, courts have limited civil rights protections to individual inequalities, not structural inequalities. Finally, courts have also required showings of intent or evidence of disparate impact that cannot be explained by racially neutral reasons.
Thus, the authors suggest that public health and civil rights advocates work together to create a new “civil rights of health” that encompasses the health justice framework, which combines knowledge of the SDOH with a commitment to legal principles of equal justice. Building on the discourse of prior justice movements (including the environmental justice, climate justice, and food justice movements), the authors propose going beyond law to include “empowerment” and prioritizing the right of racial minorities, the poor, and others to participate in decision-making and policymaking, in concert with political action.
By incorporating the health justice framework into the discussion, the authors place subordination at the forefront of the conversation about eradicating SDOH, explicitly stressing that current efforts to address SDOH have failed because the “universalist-individualist approaches to disparities in access to resources and exposure to harm are inevitably limited and inadequate.” Their new “civil rights of health” proposal expands current civil rights laws to address structural inequalities that result without intent. They also recommend the use of impact assessments to evaluate the impact of current policies, which can then be used to advocate policy change or create a record of intentional discrimination. Finally, the authors champion state and local efforts to address subordination through innovative health-related protections, such as minimum wage increases, paid leave, and safe and affordable housing in all neighborhoods.
The authors offer readers a new framework for addressing health disparities that is not limited by an outdated notion of the supremacy of individual choice. Most valuably, the article incorporates lessons from civil rights law and prior justice movements to propose a new opportunity to end health disparities caused by subordination so that the entire population of the United States can achieve health and well-being.
Recent reporting has drawn public attention to a crisis in U.S. maternity care. Concerns include the extensive use of C-sections and other medical interventions in hospital births, high rates of maternal mortality and morbidity, racial disparities in maternal and fetal outcomes, and the increase in planned home births. While many factors contribute to these problems, one rarely acknowledged factor that Professor Elizabeth Kukura highlights in her 2018 article of the same name is the phenomenon of obstetric violence. Examples of obstetric violence include performing interventions (such as C-sections, episiotomies, and artificial rupture of membranes) on birthing patients against their express refusal; coercing patients to accept such interventions by threatening them with withdrawal of care or legal action; physically restraining birthing patients with no medical justification; verbally disrespecting patients in labor; and questioning competent patients’ medical decisions.
The phenomenon of obstetric violence raises a host of questions about law, policy, and medical ethics–but to date, it has received limited attention from U.S legal scholars. Kukura’s Obstetric Violence is the type of foundational article that clearly and effectively lays the groundwork for continued scholarship in this area. Anyone interested in health law, tort law, reproductive privacy, feminist jurisprudence, or the intersection of law and medical ethics would be well-advised to read this piece and cite it extensively.
Those who have experienced obstetric violence during childbirth have long pushed for increased public awareness, publishing books and reporting their experiences in online forums. Unfortunately–as with many issues relating to reproductive health care–those with no first-hand experience of obstetric conflict are generally less inclined to view it as a pressing problem that needs immediate attention.
In the past decade, however, several legal scholars–among them, Jamie Abrams, Farah Diaz-Tello, Linda Fentiman, Michele Goodwin, Margo Kaplan, and Sylvia Law–have focused on legal issues that directly or indirectly relate to obstetric violence. Their scholarship addresses the trope of maternal-fetal conflict, state interests in fetal protection, the criminalization of mothers and pregnant women, women’s rights to informed choice, and the challenges in securing tort recovery when a patient’s autonomous medical decisions have been overriden.
Kukura’s Obstetric Violence is a natural and necessary continuation of this line of scholarship. Although there is a substantial body of international scholarship about obstetric violence (a term that was originally coined in Latin America), Kukura is one of the first to recognize its prevalence in the U.S., and to explicitly use the term as a foundation for legal scholarship.
For those unfamiliar with the various forms of obstetric violence many experience during childbirth Part I of her article examines them in (sometimes shocking) detail. Kukura offers real-world examples like that of Kimberly Turbin, a laboring woman who vocally and repeatedly refused an episiotomy. In response to her refusals, her physician verbally berated her, and made twelve incisions in her perineum while she shouted “No! No! No!”
Although there are many anecdotal examples of experiences like Ms. Turbin’s, empirical data quantifying the prevalence of obstetric mistreatment in the U.S. have (until recently) been scarce. However, Kukura astutely recognizes that this research gap “does not mean the problem is nonexistent or can simply be attributed to isolated rogue health care providers”–rather, “it reflects the extent to which it has been obscured from public awareness.” (P. 768.)
In this article, Kukura makes two extremely important contributions to the literature on reproductive autonomy and legal mechanisms for protecting it. First, she enumerates the various structural problems within the U.S. medical system that contribute to mistreatment during childbirth. Second, she offers a thorough analysis of why traditional legal approaches–in particular, tort claims for malpractice or lack of informed consent–are powerless to prevent or remedy these harms.
Kukura enumerates numerous challenges that victims face in bringing tort suits, including the fact that the harms they suffer are often intangible and/or difficult to monetize, making it almost impossible to find attorneys willing to take their cases; the difficulty of satisfying each of the elements of an informed consent claim, even if a victim alleges that her consent was coerced; and the bias exhibited by many legal decisionmakers who conclude that the birth of a healthy child outweighs any dignitary harm a mother may suffer, effectively concluding that those who have experienced obstetric violence have no legally cognizable injury.
Kukura identifies various other sources of law, beyond tort, that might be helpful in preventing or remedying these harms, but she concludes that they too are likely to be inadequate. Her conclusion is that active public advocacy is the best way to address both law and medicine’s inability thus far to address the phenomenon of obstetric violence.
In presenting the “lay of the land” of obstetric violence, Kukura has set up future scholars brilliantly for further inquiries into this problem. Social scientists will certainly be prompted to quantify the prevalence of obstetric violence and report on its real-world impact on women (such as the recently published Giving Voice to Mothers study). Tort and regulatory scholars may be drawn to explore other legal solutions that Kukura might not have considered fully, including the question of whether birth plans might be treated as advance directives (a question that is already under exploration). Questions about coerced consent might be guided by criminal law scholarship about the meaning of coercion in sexual assault cases. I very much look forward to reading the work that is inspired by Kukura’s foundational article on this important issue.
Sharona Hoffman, What Genetic Testing Teaches About Predictive Health Analytics Regulation
, __ N.C. L. Rev.
__ (forthcoming), available at SSRN
Professor Sharona Hoffman is one of our most prominent health law scholars. She is particularly interested in the intricacies of health privacy and quality in the context of pervasive healthcare technologies such as electronic health records and big data. Her expertise extends to a deep understanding of the Genetic Information Nondiscrimination Act of 2008 (GINA) and the scope of the Americans with Disabilities Act (ADA). In her excellent article, What Genetic Testing Teaches about Predictive Health Analytics Regulation, Hoffman neatly combines these interests, providing a thoughtful critique of predictive health analytics founded on a detailed description of our legal and policy experiences with genetic testing. The comparison is particularly pertinent because, to an extent, algorithmic medicine is stepping into a space that many had hoped would by now be occupied by precision medicine.
Hoffman identifies the policy and regulatory issues raised by both genetic testing and what she labels as long-term predictive analytics as “clinical validity and accuracy, privacy and discrimination, and psychological harms.” (P. 14.) At root, these raise the question of what Jessica Roberts and Elizabeth Weeks call “healthism,” “[p]ermitting—and even encouraging—discriminatory treatment based on an individual’s health status.”
Hoffman’s position is that, while we have taken a “relatively cautious approach to genetic testing,” the approach to predictive health analytics has been “more cavalier.” (P. 3.) To a large extent this is likely because the publicly-funded human genome project featured (as Hoffman notes) a concomitant Ethical, Legal and Social Implications Research Program (ELSI). In contrast (and at least in the U.S.), most predictive health analytics projects are in the hands of private actors such as Alphabet’s Verily or IBM Watson (even if some of their products eventually may receive reimbursement from public funds). A lack of social inquiry or concern with regard to the latter also may be attributable to different media and public perceptions. Cracking our genetic code was big news, regularly reported on. In contrast, analysis of predictive health analytics, while of interest to economists is more likely to be subsumed under broader, frequently dystopian visions about the very future of mankind or at least its impact on employment.
Hoffman correctly views the risks such as breach of privacy or discrimination associated with health analytics as amplified by the inclusion of non-traditional data sources and the products such as health scores offered by businesses such as data-brokers. Those observations also inform the regulatory problems she identifies. For example, while GINA would regulate many of these activities if they involved genetic information the same cannot be said of predictive health analytics. Similarly, as Hoffman points out, other regulatory models struggle here. Thus, the HIPAA Privacy Rule falls down when data is in the hands of persons who are not covered entities or their business associates while the Food and Drug Administration’s jurisdiction maps poorly to these products and the risks they pose (notwithstanding the agency’s recent discussion paper on healthcare AI).
As a result and as Hoffman terms it, this “article is a call to action.” (P. 32.) First, she argues that the scientific community must “carefully consider the benefits and risks of predictive health analytics and implement safeguards to address its hazards… and develop oversight mechanisms to safeguard the quality of predictive models.” (P. 4.) Second:
Data subjects should enjoy rights that give them a degree of control over their data including predicted health outcomes. They should have an expanded right to consent to disclosure of their health information a right to discover who has seen their health data and a right to sue for privacy breaches that harm them and for discrimination based on disease predictions.
(P. 4.) This second group of recommendations inevitably leads to a call for changes to the HIPAA rules and the ADA, the former extending the reach of “covered entity” and “health information.” Here I part company somewhat, as I remain unconvinced that HIPAA can be usefully extended much beyond its current scope. I go further (accepting the inevitable accusation of political naïvety) arguing that when looking at regulatory options for healthcare AI we should go big or go home.
Hoffman’s “call to action” deserves immediate attention. So far the public debate in the U.S. has been muted, limited to the technocratic musings of the Obama Administration’s Artificial Intelligence Automation, and the Economy report to the more jingoistic proposals of the Trump Administration’ Artificial Intelligence for the American People. Our friends in Europe seem be further along the regulatory path, benefiting from perceptive reports from both the House of Lords in the UK and the European Commission’s Ethics Guidelines For Trustworthy AI.
Professor Hoffman is on solid ground in arguing that now is the time for action. As she argues, “many more minds must tackle the challenges of predictive health analytics and develop mechanisms to enhance the integrity and benefits of this technology.” (P. 39.) To do otherwise would be “imprudent and could cost society dearly.” (P. 39.) Highlighting those perils with her perceptive and apposite comparisons to the risks associated with genetic testing and the appropriate legal and policy steps that followed will be the lasting message of this excellent article.