Daniel Skinner is assistant professor of political science, specializing in political theory, at Capital University in Columbus, Ohio. His scholarly projects engage the intersections of the politics of medicine and health care and political rhetoric. He is currently developing a book manuscript that examines the politics of the concept of medical necessity in American health care debates. His work has appeared in journals such as Review of Politics; Health, Culture and Society; Politics and Gender; Polity; and Law, Culture, and the Humanities. E-mail: firstname.lastname@example.org
Defining Medical Necessity under the Patient Protection and Affordable Care Act
Article first published online: 8 MAY 2013
© 2013 by The American Society for Public Administration
Public Administration Review
Special Issue: The Health Care Crucible Post-Reform: Challenges for Public Administration. This special issue on health care reform is sponsored by the School of Public Affairs and Administration, Rutgers University - Newark. Frank J. Thompson, Guest Editor
Volume 73, Issue s1, pages S49–S59, September/October 2013
How to Cite
Skinner, D. (2013), Defining Medical Necessity under the Patient Protection and Affordable Care Act. Public Administration Review, 73: S49–S59. doi: 10.1111/puar.12068
- Issue published online: 13 SEP 2013
- Article first published online: 8 MAY 2013
- Top of page
- The Politics of Defining Medical Necessity
- Contentious Areas of ACA Implementation and Medical Necessity
While the Patient Protection and Affordable Care Act (ACA) of 2010 promises to expand care to millions of Americans, how the bill will determine the meaning of medical necessity—the concept that continues to serve as the key means for regulating the utilization of health care services—remains an open question. Instead of detailing what is and is not considered medically necessary, the ACA charges the U.S. Secretary of Health and Human Services with overseeing the processes by which these critical determinations will be made. This article considers a series of “meta-questions” regarding the place of medical necessity determinations within the context of the ACA. It does so by examining the policy challenges presented by a bill that attempts to balance government regulation, physician autonomy, and the various market forces driving managed care. The result is an understanding of the inherently political nature of medical necessity determinations under the ACA.
In the United States, the concept of “medical necessity” continues to serve as the primary gatekeeper for the utilization of health care services. The concept's usefulness is often justified in terms of its ability to distinguish not only necessary from unnecessary care but also medical from cosmetic, experimental, elective, and even social or educational procedures, often in the name of ensuring that patients receive treatment that is appropriate and medically indicated while also controlling costs. At the same time, the concept's meaning remains elusive even as it is deployed in particular policy contexts. This puts it at the center of significant disagreement and debate.
While the Patient Protection and Affordable Care Act (ACA) of 2010 promises to expand access to health care services to tens of millions of Americans, how the act will shape the meaning of medical necessity as deployed by physicians, insurance providers, and other stakeholders remains an open question. At the most basic level, the bill does not advance a new or better definition of medical necessity. Rather than detailing what is and is not considered medically necessary or establishing standards for distinguishing medical necessity from non-necessity, the ACA charges the secretary of the U.S. Department of Health and Human Services (HHS) with overseeing the processes by which such determinations are made. To be sure, this is a major step forward from the pre-ACA period, when medical necessity determinations were the product of a decentralized network of private and public providers constrained by regulatory schemes issuing from multiple and competing levels of government, but with no overarching philosophy to ground what could and could not be legitimately called medically necessary. Yet the fact remains that the ACA does not solve the problem of how to operationalize this elusive but important term of art.
The question of medical necessity is a long-standing one. In many ways, medical necessity's uncertain place within the context of ACA implementation mirrors past administrative considerations in American health care, most notably, those that faced the Department of Health, Education, and Welfare during the implementation of Medicare and, later, those of the 1990s, when coverage denials by health maintenance organizations (HMOs) were the subject of considerable political debate. For example, scholars such as Thompson (1981), Marmor (2000), and Oberlander (2003) have recounted the critical negotiations that had to take place between hospitals and various medical industry stakeholders in developing sustainable payment structures for the new system. A central concern of these new structures hinged on the question of necessary versus non-necessary care, the latter of which health care providers could more easily disclaim responsibility for than the former. Similarly, Hackey “chronicles the slow but steady emergence of countervailing power in the hospital industry since mid-century” and explains why the “transformation of American health care policymaking [in the 1990s reflected] the federal government's growing fiscal obligations as the single largest purchaser of health care” (1999, 625). According to Hackey, by the 1990s, “decisions about the pricing and allocation of health services, standards of medical practice, and the profitability of providers increasingly rested in the hands of federal policymakers” (626). More to the point, the seemingly arbitrary and decentralized nature of medical necessity decision making within managed care contexts gave rise to debates in the 1990s that raised concerns that HMOs were scrutinizing physicians’ claims about patients’ needs for the purposes of profit rather than sound medical judgment (Hall and Anderson 1992).
A central concern of these new structures hinged on the question of necessary versus non-necessary care, the latter of which health care providers could more easily disclaim responsibility for than the former.
Although the ACA aims to promote predictability in health care delivery, it also calls on the HHS to retain pre-ACA utilization practices so as to balance government oversight with decisions made by established stakeholders, from managed care organizations to state Medicaid policy makers. This means that, for better or worse, the legacies of past health care systems remain strong under the ACA. Thus, while medical necessity determinations would appear to be placed under the umbrella of the ACA's celebrated antidiscrimination provisions, which it establishes at the level of benefits and access to preventive services, there remains a great deal of uncertainty as to what regulatory role, if any, the HHS will play in ensuring that medical necessity determinations are evaluated based on medical rather than political or economic calculations. This is significant because medical necessity determinations connect covered benefits to the delivery of care to patients. Without a medical necessity determination, the question of which health benefits one may be able to access is essentially moot, which suggests that ACA implementation promises to excite rather than temper political contests over the meaning of medical necessity.
While questions about what constitutes medically necessary care are predictably contentious at certain intersections, such as reproduction and sexuality, this article examines ACA implementation and medical necessity as they relate to a number of medical questions, some predictable, others not. Of course, some medical necessity determinations will be less controversial and contested. This is not necessarily because they are less subjective, however, but rather because these determinations do not contest boundaries of social and political power that can be used to exclude them from health care regimes.
This article begins with a consideration of a series of “meta-questions” regarding the place of medical necessity determinations within the context of the ACA. In an attempt to make sense of the policy challenges presented by a bill that does not claim centralized authority for medical decision making but attempts instead to balance government regulation, patient choice, physician autonomy with the various market forces driving managed care, the article identifies key problems in specific areas of care that ACA implementation is likely to raise. Finally, it examines a series of questions concerning how medical necessity will be handled in and refracted through ACA-sanctioned appeals processes, which can either confirm or reject the decisions made by physicians and providers regarding the needs of particular patients. Taken together, the questions that motivate this analysis underscore the considerable challenges that defining medical necessity presents for ACA administrators. The article ultimately concedes the inherently political nature of medical necessity, eschewing purportedly “objective” definitions that are likely to leave patients worse off than they would be in a sphere of vigilance, advocacy, and skepticism. This suggests, moreover, that the controversies opened during the health care reform debates of 2010 not only remain unsettled but also are likely to intensify over the coming years. This is a good thing, considering the alternatives.
The article ultimately concedes the inherently political nature of medical necessity, eschewing purportedly “objective” definitions that are likely to leave patients worse off than they would be in a sphere of vigilance, advocacy, and skepticism.
The Politics of Defining Medical Necessity
- Top of page
- The Politics of Defining Medical Necessity
- Contentious Areas of ACA Implementation and Medical Necessity
The specific language of “medical necessity” or “medically necessary” appears at only three points in the ACA (§§ 2707, 520K, 9007), each of which does little more than evoke an unsettled, seemingly open-ended term. As such, despite its centrality to the bill's implementation, Rosenbaum (2012) notes that
The law itself is silent on many aspects of coverage design: the definitions that must be used for the broad benefit categories; the governing medical necessity standard; the permissibility of coverage limitations (both quantitative and non-quantitative limits such as the use of fixed treatment limits or narrow practice guidelines in determining which treatments will be covered); and the use of coverage exclusions.
For this reason, especially given its indispensability within American managed care, medical necessity is in many ways an unarticulated foundation of the ACA. As Hill notes, “Prolix though it is, the ACA itself contains very little in the way of explanation or definition of key concepts such as . . . ‘medical necessity’ . . . nor does it explicitly distinguish “medical” from “nonmedical” interventions” (2012, 450).
Despite failing to address medical necessity directly, the ACA does mark significant progress toward the systemization of essential health benefits. Understanding the difference between benefits and the medical necessity determinations that allow patients to gain access to them is critical for understanding medical necessity itself. The ACA's Uniform Glossary defines such benefits as a “set of health care service categories that must be covered by certain plans, starting in 2014” (HHS 2012). As it explains, the ACA “ensures [that] health plans offered in the individual and small group markets, both inside and outside of [exchanges], offer a comprehensive package of items and services,” including ambulatory patient services; emergency services; hospitalization; maternity and newborn care; mental health and substance use disorder services, including behavioral health treatment; prescription drugs; rehabilitative and habilitative services and devices; laboratory services; preventive and wellness services and chronic disease management; and pediatric services, including oral and vision care. The HHS allows for flexible benchmarking of services within these categories, but a category may not be excluded altogether (HealthCare.gov 2011). However, in response to political concerns that the ACA would be too restrictive in the establishment of benefits packages, the HHS has made “flexibility” a buzzword of ACA benefits implementation. Despite some fears that the HHS might allow too much flexibility, the ACA ensures that plans cover a wide range of benefits, establishing qualitative criteria for what constitutes a reasonable package of essential benefits.
At the same time, neither the ACA nor the HHS engages the question of medical necessity with the same vigor or precision. To be sure, were they to do so, the administrative tasks would be daunting and the political challenges formidable. Such actions would also evoke accusations that the HHS was intruding on doctor–patient relations. Both outcomes would be likely, for a reason that helps us understand the nature of medical necessity itself, which resists abstraction and must be determined instead through assessments of specific patients who are located in particular contexts as opposed to universally applicable benefits, which constitute general guidelines for plans. As a result, problems such as discrimination can be more easily (and less contentiously) conceptualized at the level of benefits than through medical necessity determinations, which must account for a wider variety of judgments, as well as medical and social questions. Hence, Hill's observation that medical necessity “refers to the medical appropriateness of a particular intervention in a particular case or type of case,” while benefits refer “more broadly to the types of healthcare that must be covered under insurance plans, such as preventive office visits and ‘medically necessary’ treatments for various types of conditions” (2012, 449; emphasis added), underscores the problem of lodging medical necessity determinations within benefits definitions. Rather, medical necessity constitutes “a more case- or condition-specific concept” than benefits, a difference that suggests a key challenge for ACA implementation concerning medical necessity decision making: how to ensure that the ACA's antidiscrimination protections for benefits are extended to the level of the more variable concept of medical necessity. “Flexibility,” in other words, poses a potential problem when it leads to unfair or inconsistent practices in determining medical necessity.
The ACA's impact on medical necessity is likely to be primarily de facto rather than de jure, providing for modes of reconsideration and second hearings for particular judgments. This suggests that far from constituting a top-down diktat from the HHS, ACA implementation is likely to create new spaces for debating—even if in a hotly contested manner—the meaning of medical necessity.1 A question arises, of course, concerning the nature and location of such spaces. For example, although HHS secretary Kathleen Sebelius announced (HHS 2011) a period of open public comment on benefits in 2011, the HHS has not indicated that it will seek such direct input from the public on the question of medical necessity. The concern is that medical necessity is likely to remain uninterrogated in broader social terms, possibly restricted to a few professional stakeholders, which means that patients with different coverage plans will continue to be subject to different outcomes from medical necessity decision making. At a minimum, ACA implementation has the potential to give rise to a more sustained discussion of different deployments of medical necessity, in turn exposing health plans that approach medical necessity as a cost-cutting tool or that draw boundaries in ways that make medical necessity a means for enforcing social norms rather than patient-centered medical need.
At a minimum, ACA implementation has the potential to give rise to a more sustained discussion of different deployments of medical necessity.
Some critics have lamented the ACA's deference to state governments and insurance providers in determining medical necessity standards and providing oversight. Indeed, there is a great deal of difference in states’ medical necessity frameworks and appeals processes, especially under Medicaid, as some states explicitly include cost considerations, while others exceed minimum coverage requirements to include that which others consider elective and hence not strictly necessary (Cohen 2010). Critics who are uncomfortable with the vicissitudes of state politics generally prefer to see the ACA's benefits extending to the provision of care itself, reigning in states’ abilities to roll back ACA protections at the point of the delivery of care. I will return to this question later.
These considerations remind us what public health scholars have long maintained, namely, that insuring a certain population is not the same as ensuring or even promoting the health of that population (Cohn 2007). The devolution of the question of medical necessity to state officials and insurance providers—to be sure, for pragmatic administrative reasons rather than the attainment of health care goals—raises concerns about cost-cutting strategies on the part of private providers and discriminatory practices that could work their way into medical necessity determinations, which would effectively undermine covered benefits by refusing patients access to them by declaring them medical unnecessary in particular contexts. For example, James Earl Ray, who was convicted for murdering the Reverend Martin Luther King, Jr., was denied a liver transplant in large part because of his incarceration, raising issues of discrimination against prisoners who struggle to access even care that is deemed medically necessary (Wright 1998). Similarly, organizations such as the United Spinal Association (http://www.usersfirst.org) have documented instances of potentially discriminatory medical necessity determinations for those seeking to achieve mobility with wheelchairs. Oftentimes, these instances concern the conflation of “least costly” with “cheapest alternative,” the latter being generally regarded as an inappropriate limiting principle for medical necessity.
The role played by pharmaceutical and medical technology companies and other interests also applies pressure to the decision-making process (Brody 2009), where these companies’ missions are concerned with expanding the frequency of medical necessity determinations so as to maximize the sale of their products and services (hence the well-known American advertising trope, “Ask your doctor if X is right for you.”). Indeed, the role played by such interests further undermines any pretense to a purely “medical” medical necessity. These concerns echo the politics of American health care more generally, which not only has failed to adequately address the question of rationing health services—by markets as well as governments—but also is suspicious of the politics of definition itself, which remains billed as a “government takeover” despite scholarly and professional consensus that carefully constructed, evidence-based, and patient-centered definitions are central to the delivery of effective and efficient health care.
Contentious Areas of ACA Implementation and Medical Necessity
- Top of page
- The Politics of Defining Medical Necessity
- Contentious Areas of ACA Implementation and Medical Necessity
Given that so much of the definitional work for ACA implementation will be carried out through administrative code, the HHS is likely to be at the center of some of the most contentious political debates of the coming years. This section examines some key medical necessity fault lines that are likely to be drawn in the course of ACA implementation. In each case, I show why the pursuit of ethical and efficacious medical necessity decision making under the ACA requires attending to particular openings where discrimination and insensitivity to patients’ needs might work their way back into the ACA utilization schemas.
Reproductive and Sexual Health
Much has been made of ACA medical necessity determinations regarding reproductive health. Hill advances some plausible scenarios of how ACA implementation might reopen previous—and broader—controversies in reproductive health:
[I]t is conceivable that states could outlaw coverage for prenatal genetic testing or counseling, on the theory that it is likely to lead to abortion. Another imaginable scenario is that insurance companies will decline to provide coverage for vaginal birth after a first child is born through caesarean section. If governmental regulations end up making these safe and legal medical services unavailable for all intents and purposes, courts may one day decide that women's rights to procreative autonomy and bodily integrity are implicated. (2012, 469)
Hill's focus is on benefits, which would be applied broadly to coverage groups. The political nature of such broad application, however, makes medical necessity determinations for individual patients all the more critical. Skeptical of the cultural or political projects that they believe may be encoded in the ACA's benefits regimes—especially preventive care, which, by definition, is afforded before problems arise—the ACA's opponents often juxtapose proactive preventive care with the more conservative and familiar discourse of medical necessity, which is still widely regarded as a cause for social as opposed to individual responsibility. This has led influential political actors such as radio host Rush Limbaugh to suggest that publicly subsidized contraception is akin to promoting prostitution because sexuality concerns behaviors that are choices. Limbaugh's tack was to blame women in need of affordable contraception to reduce the amount of sex that they have, reducing the contraception issue to a series of bad choices rather than a need (Saletan 2012). This, of course, constitutes a particularly acute—and historically rooted—form of gender discrimination. Preventive services, in this view, are only necessary in the absence of behavior modifications that liberals are unwilling to demand.
Though contraception remains politically controversial despite the fact that those versed in public health understand its clear benefits, the ACA medical necessity debates are still likely to hinge on the relationship between preventive care for populations—which the ACA emphasizes and promotes—and medical necessity determinations for individuals. One consequence of forcing access to health provisions such as contraception to travel under the sign of medical necessity is the hollowing out of the “medical” itself, which, in turn, risks undermining medical necessity's social and persuasive force. For example, many Americans support the provision of subsidized contraception because it affords reproductive control and freedom (Petchesky 1990). As the HHS (2012) notes, moreover, “[s]cientists have abundant evidence that birth control has significant health benefits for women and their families, is documented to significantly reduce health costs, and is the most commonly taken drug in America by young and middle-aged women.”
One consequence of forcing access to health provisions such as contraception to travel under the sign of medical necessity is the hollowing out of the “medical” itself, which, in turn, risks undermining medical necessity's social and persuasive force.
Nonetheless, ACA medical necessity debates have started to turn to the smaller, though certainly no less important, group of women who take contraceptive pharmaceuticals for medical reasons other than avoiding pregnancy. The power of this move is that most religious traditions that formally proscribe contraception—such as Catholicism—also allow for medical necessity exceptions, which could neutralize controversy by evoking those who need contraception rather than those whose health would benefit from it as a mode of preventative care. Extended to the domain of preventive services, however, such a requirement stretches intuitive understandings of medical necessity and creates conditions for contentious politics. In light of statements made by Republican Representatives Tim Huelskamp (KS), who called the contraception mandate “anti-Catholic bigotry,” and Mike Kelly (PA), who compared the policy to Pearl Harbor and the attacks of September 11, 2001, one sees clearly that the medical necessity label does not deflect criticism (Baker and Viebeck 2012).
Access to abortion faces similar challenges as contraception. As is well known, abortion was one of the most hotly debated questions during the early ACA debates (see Walsh 2012). As has recently been noted, however, part of the strategy utilized by anti-abortion groups in contemporary abortion politics has been to argue that “there is no such thing as a medically necessary abortion,” establishing a tensional relationship between a “woman's right to choose,” which is a political claim, and the necessity for an abortion, which is a medical claim, deployed in large part to deflect political or ethical criticism (Skinner 2012). Insofar as the ACA is tasked with promoting health care rather than defending anti-abortion agendas, medical necessity determinations regarding pregnancy (and the termination of pregnancy) will be made under a suspicion that “the ACA allows use of federal funds for elective abortion.” As it has in many areas, the HHS consulted with the Institute of Medicine, which convened a Committee on Determination of benefits to provide guidance on medical necessity decision making. Yet, in spite of the significant questions raised for medically necessary (or “therapeutic”) abortions by the ACA, the Institute's Committee on Preventive Services for Women refused to engage the question, noting only that “[d]espite the potential health and well-being benefits to some women, abortion services were considered to be outside of the project's scope, given the restrictions contained in the ACA” (2011, 22). The question of whether abortion services will be made available when medical necessity judgments are made remains open. Given the contentiousness of ACA preventive services, the development of standards for determining medical necessity would seem to be critical, if only as a stopgap measure capable of providing access to what public health experts—if not politicians—regard as important health services.
The politics of medical necessity for gay, lesbian, bisexual, and transgender (LGBT) people throws a series of specific kinks in ACA benefits requirements because health needs asserted by LGBT people—even those sanctioned by medical experts—are often met with skepticism. At the same time, LGBT needs underscore the insufficiency of universal best practices in promoting LGBT health. Studies such as the Center for American Progress's (CAP) report Changing the Game: What Health Care Reform Means for Gay, Lesbian, Bisexual, and Transgender Americans (Baker and Krehely 2012) tend to focus on challenges issuing from coverage discrimination, the definitions of “family” for accessing family plans, and data collection on LGBT populations. But they rarely address the qualitative dimension of medical necessity itself. Core LGBT issues can be grouped into two broad categories: LGBT needs generally and transgender needs specifically arising from transexuality.
The status of LGBT needs writ large raises a question as to whether the ACA's antidiscrimination provisions are sufficient to account for the health needs of LGBT people insofar as they sometimes differ from those of other populations (Meyer and Northridge 2007). As the Institute of Medicine (2011) noted in its report The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding, “lesbian, gay, bisexual, and transgender individuals experience unique health disparities,” and although “the health needs of this community are often grouped together, each of these letters represents a distinct population with its own health concerns” (2011, 1). Studies suggest, for example, the LGBT youth experience heightened risks stemming from substance use, eating disorders, suicide, risky sexual behaviors, exposure to violence, victimization, and homelessness (Coker, Austin, and Schuster 2010).
Additionally, it has been documented that, for a variety of reasons, lesbians are at a greater risk of developing breast cancer than heterosexual women (Case et al. 2004). Similarly, for reasons that often seem to have more to do with misconceptions than medical evidence, lesbians are less likely to be given cervical and pap smears than heterosexual women despite clear benefits from such tests (Lee 2000). As the Centers for Disease Control and Prevention concluded, “Lesbian, gay, bisexual, and transgender persons face unique health care risks,” suggesting the need for further research, and community outreach and education on the nature of “health risks, the need for screening, and preventive measures” (quoted in Lee 2000, 407). Yet these preliminary insights also suggest that LGBT health risks and needs sometimes require LGBT-specific medical necessity regimes that may require specific tests, screenings, as well as medical necessity decision making that resists the tendency to operate heteronormatively. Assuming that physicians are trained to see and respect these unique needs, will regulators and managed care bureaucrats respect those unique determinations? While benefits might be universally available in theory to entire coverage populations, it may be the case that LGBT populations require specific considerations in accessing those benefits vis-à-vis medical necessity determinations.
Because so much rests on the particular judgments made by physicians, a related question concerns how to respond to physicians who are empowered to make medical necessity determinations but are LGBT insensitive, regardless of whether such insensitivity is the result of discrimination or poor training (Hudson 2011; Obedin-Maliver et al. 2011). Depending on the degree of attention to these questions during implementation, the ACA promises to address these problems through its recruitment protocols, especially through the identification of LGBT-friendly physicians and through the use of the Patient-Centered Outcomes Research Institute (PCORI), which was established by the ACA to understand the particular considerations of medical necessity that might exist for LGBT peoples.2 The question of physician recruitment will be facilitated by the National Health Care Workforce Commission established by the ACA (§ 5101) and tasked with setting priorities for addressing the needs of special populations, particularly by recruiting physicians. The creation of an LGBT-sensitive medical necessity standard should involve recruiting LGBT-sensitive—and possibly even LGBT-identifying—physicians. A related goal of the ACA calls for increasing the “cultural competence” of both health care administrators and providers, which the ACA promises to do through data collection, the PCORI, and training that includes sustained considerations of LGBT needs (CAP 2012, 14; ACA §§ 5301, 5306–7). The only way in which the ACA promises to address such distinctions of need is through its Patient's Bill of Rights, which guarantees external review and appeal (§ 1001) (I will discuss this at length later). But these broad considerations often belie the more subtle determinations that are made within the context of health care decision making in general and medical necessity in particular.3 As I argue later, the outcomes of those appeals are in no way guaranteed to enforce an LGBT-friendly reading of medical necessity. What is needed is not externality but a new and flexible normative framework.
Questions about how health care services can address the specific needs of transgender people often arise at a more fundamental level—before medical necessity becomes an issue—than those addressing broader LGBT populations (Lawrence 2007). This is because, among other things, benefits frameworks are often designed in such a way that they resist transgender bodies themselves. The CAP report notes that medical necessity determinations are often calibrated to more traditionally gendered bodies in ways that—insofar as they resist catch-all notions of necessity—effectively negate transsexuals’ access to care (see Currah, Juang, and Minter 2006).
Nothing in the ACA alters the widespread practice of including “transition exclusions” in benefits packages, which shield providers from the responsibility of paying for the costs of transsexual surgery or other modalities of typical transgender care such as hormone therapy. However, even when the initial costs of surgery are borne by patients, transition exclusions are often utilized to deny access to basic health care services simply because those services are pegged to people who are recognized as being of the opposite gender (CAP 2012, 5). A great deal of uncertainty exists regarding the ACA's ability to enforce medical necessity decision making that recognizes the needs of the people who stand before them—regardless of how they became those people—rather than that which discriminatory laws allow them to see, without prejudice on the basis of gender or sexuality.
For example, are transgender people born as females who become legally recognized as males entitled to receive a hysterectomy related to their diagnosis of gender identity disorder? (see Esquivel v. Oregon, Or. Cir. Ct., 2010). Are male-to-female transsexuals, many of whom have hormonal chemistries that make them more similar to biological women than men and hence are subject to health risks commonly ascribed to biological women, eligible to receive the same routine mammograms as other women? (see Goldwert 2012). In these cases, physicians’ determinations of medical necessity were rejected by health insurance providers on the basis of exclusionary policies, only to be overturned by courts. These examples make clear that the politics of medical necessity plays out both on the level of physicians’ inability or unwillingness to recognize LGBT-specific needs as well as health insurance providers’ unwillingness to respect physicians’ medical necessity determinations because they do not jibe with the heteronormative basis of their benefits frameworks. In each case, some form of oversight is necessary to ensure that discrimination does not work its way back into LGBT care by exploiting the variability and particularity of medical necessity decision making. More to the point, will medical necessity determinations be circumscribed ex ante by fixed notions of patients’ needs—subjecting those patients to oppressive forms of social power and prejudice—or will medical necessity be constituted as a response to physicians’ assessments of their patients’ conditions, irrespective of how they came to possess the bodies in which they now live or what behaviors, lifestyles, or identities might be implicated in shaping their health needs?
Policing the Boundaries of Medical Necessity and Cosmetic and Elective Care
The blurring of legitimate medical care with that which is deemed cosmetic and/or elective is often cited as one of the prime specters of so-called moral hazard. Accordingly, policing these boundaries is thought to be critical in distinguishing medically necessary from unnecessary care, controlling costs along the way. Here, perhaps more than in other areas, the highly particularistic—and often arbitrary, or at least slippery—nature of medical necessity determinations becomes clear. Issues that will have to have their medical necessity clarified range from Lasik and other forms of eye correction to postoperative or accident scar removal to breast reduction and breast enlargement to cleft palate surgery (Singer and Bergthold 2001a). A key question in these debates tends to center on the very question of whether a need is considered medical at all. Hill notes, for example, that a decision to declare bariatric surgery for obese people a medical condition may require “viewing obesity as a disease rather than a lifestyle choice, and on showing that bariatric surgery is ‘medically necessary’” (2012, 469). One cannot escape the political dimensions of such a question, especially within the context of an American political culture inured with a long-standing rhetoric of individual responsibility.
A key question in these debates tends to center on the very question of whether a need is considered medical at all.
Early versions of the ACA in 2009 instated an excise tax on elective cosmetic medical procedures (§ 9017), which would have amended the Internal Revenue System (IRS) code to impose “on any cosmetic surgery and medical procedure a tax equal to 5 percent of the amount paid for such procedure.” According to the amendment, such procedures are performed by physicians and “not necessary to ameliorate a deformity arising from, or directly related to, a congenital abnormality, a personal injury resulting from an accident or trauma, or disfiguring disease.” The proposal, designed “to tax those who indulge in medically unnecessary procedures in order to pay for medical necessities for everyone else” (Warner 2009), was met with hardened opposition that is instructive for understanding medical necessity and ACA implementation.
First, in a letter objecting to the tax, the American Society of Plastic Surgeons (see http://www.auanet.org/resources.cfm?ID=283) claimed that such a tax—motivated by what they argue is a misguided assumption that cosmetic surgery is “a luxury of the very wealthy”—may discriminate against women and the middle class, who constitute a majority of those seeking cosmetic surgery. As some feminists, including National Organization for Women president Terry O'Neill, argued, the tax failed to account for the reason why so many women in middle age seek cosmetic surgery: economic survival in a sexist world (McKinley 2009). Others claimed that the tax—famously dubbed the “Bo-tax” for its impact on popular Botox antiwrinkle treatments—would empower bureaucrats to draw the often blurry distinction between “reconstructive” (such as post mastectomy breast reconstruction or skin grafts for burn victims) and “cosmetic” surgery, which are deemed elective, raising the possibility of using the category of the cosmetic as a cover for cost savings.
In other cases, debates centered on disagreement over the meaning of elective and cosmetic, as is often the case with payments for transsexual surgeries, which—although they often require psychological assessment and diagnosis (such as gender identity disorder, which is recognized by the American Psychiatric Association)—are, like other surgeries deemed cosmetic or elective, rarely paid for by health providers. These groups also raise privacy concerns arising from IRS audits of medical records to make these determinations. In the end, the ACA was amended to replace the Bo-tax with a 10 percent “tanning tax” (§ 10907), in large part because of the overwhelming consensus concerning the link between tanning and skin cancer (the bill does exempt “phototherapy service[s] performed by a licensed medical professional”).
The structural integrity of the ACA, which required the raising of new revenues, therefore hinges—almost existentially—on the distinction between medically necessary and elective care. Beyond the Bo-tax/tanning issue, however, the ACA provides little guidance as to how the distinction between medical necessity and cosmetic and/or elective care is to be regulated so as to ensure that decisions are medical rather than discriminatory—particularly as concerns women and others whose bodies require medical maintenance for health and survival—at the level of utilization. Here, as elsewhere, the distinction's devolution to states and providers raises potential problems simply because such devolution leaves medical necessity decision making open to clinically indeterminate and culturally sprawling contexts.
The ACA's passage was met with high hopes by advocates of disability rights. Most notably, the ACA's benefits requirements mandate that the HHS must approach benefits equitably, balancing services without prejudice to some coverage areas—such as hospitalization, mental health services, or preventive and wellness services—over others. Beyond basic parity, however, the law requires that the HHS ensure that benefits packages do not “discriminate against individuals because of their age, disability, or expected length of life” (§ 1302[b][B]). Additionally, the HHS must consider the particular needs of “diverse segments of the population, including women, children, persons with disabilities, and other groups” (§ 1302[b][C]). On the level of essential benefits, therefore, the ACA appears to make great strides.
A key problem, as Rosenbaum, Teitelbaum, and Hayes (2011, 5) note, is that despite the fact that the ACA requires parity and antidiscrimination on the level of benefits, it requires that the HHS “recognize existing utilization management techniques in use at the time of passage.” While these techniques would most likely “be subject to the law's broad nondiscrimination provisions,” the broader point remains clear: we must take care to scrutinize how, and with which ends, medical necessity determinations are made.
Rosenbaum, Teitelbaum, and Hayes published their optimistic assessment of ACA disability provisions in March 2011. By September, however, things had changed. Writing for the Health Affairs Blog, Rosenbaum (2011) calls attention to a central paradox in the direction that ACA implementation appears to be headed with regard to antidiscrimination provisions for disability. As she notes, the ACA establishes “fairness and nondiscrimination as basic tenets of coverage in the individual and small group market,” yet in implementation, the HHS seemed set to undermine the strengths of the benefits provisions. The problem arose in the language of the “proposed disclosure rules” that explain the terms of coverage to consumers, which would define medical necessity as “[h]ealth care services or supplies needed to prevent, diagnose, or treat an illness, injury, disease or its symptoms and that meets accepted standards of medicine” (76 Fed. Reg. 52529). As Rosenbaum (2011) explains,
The exclusion of the term “conditions” from the list of situations in which medically necessary covered treatments and services must be furnished can have an enormous impact in the bizarre world of insurer parlance. Speech therapy for a stroke patient could well be medically necessary to treat an acute illness. The same clinically beneficial speech therapy, if provided for child born with cerebral palsy or a cleft palate or spina bifida would be excluded as not medically necessary if the situation giving rise to the treatment is deemed a condition rather than an illness or injury.
Here, as elsewhere, the question of medical necessity will be determined largely by language established during implementation. Yet even if the HHS takes the step of including “conditions” among acceptable situations, the determinations made in response to those conditions may still be riddled with high levels of variability. In other words, the mere inclusion of language is not guaranteed to solve the problem of medical necessity. More reliable solutions will require a commitment to a broader medical ethic, such as taking these “conditions” seriously as a site of social engagement. It will require an ethos of interpretation that facilitates better—and not simply a narrow notion of “necessary”—care.
Here, as elsewhere, the question of medical necessity will be determined largely by language established during implementation.
Mental Health and Substance Abuse Disorders
ACA mental health medical necessity provisions are subject to many of the same questions as disability. Most notable is the importance of the language of “condition,” which requires care for the states in which patients find themselves without proving that an injury or disease caused the condition. The ACA marks significant progress in recognizing the importance of addressing mental health conditions as part of a broader consideration of health. The ACA's continual acknowledgment of the importance of mental health is broadened as well by its routine inclusion of addiction services among benefits. Because it extends the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) (§ 2726), which requires that plans treat mental health and addiction coverage in the same way and with the same access as medical and surgical coverage by 2014, most plans will be required to provide coverage for mental health conditions and substance use disorders. Of course, as with disability, ground gained in benefits does not necessarily guarantee the accessibility of services. For this reason, it is critical that the MHPAEA disallows the use of different medical necessity standards for mental health and addiction than for other forms of medical and surgical care. Whereas the pre-ACA MHPAEA only mandated that plans opting to include mental health and substance abuse coverage in their plans do so with parity, the ACA mandates that plans participating in exchanges include such coverage in their benefits packages, as well as not refuse those with preexisting conditions in these categories coverage—a major step toward making mental health and addiction care available to millions of Americans.
Here, too, however, things are not so simple. Despite the MHPAEA's important steps toward mental health parity, it also exempts group policies covering fewer than 50 employees (“small businesses”) from its rules. In an effort to reduce financial burdens on small businesses—one of the many compromises that the Barack Obama administration made to ensure that the bill would pass—the ACA maintains this disconcerting exception. This is a problem not only because it opens a door for discriminatory medical necessity decision making but because it may undermine the ACA's Patient's Bill of Rights as well, as the MHPAEA mandates that criteria for mental health and addiction medical necessity determinations must be made available by the plan's beneficiaries. More to the point, without the MHPAEA protections, the application of a higher threshold for mental health medical necessity determinations than for other medical needs is legal. It is possible that this will lead to a devaluing of mental health more generally within this insured population.
ACA Medical Necessity Appeals
The key means by which the fate of each of these—and other—areas of concern will be determined is the ACA's requirements regarding internal and especially external claims appeals. Section 2719 requires that health care providers establish “effective” appeals processes for both “coverage determinations and claims.” As part of these requirements, plans must maintain an internal appeals process and “provide notice to enrollees, in a culturally and linguistically appropriate manner, of available internal and external appeals processes, and the availability of any applicable office of health insurance consumer assistance or ombudsman . . . to assist such enrollees with the appeals processes.” Enrollees must be allowed to review their files and “present evidence and testimony as part of the appeals process,” while receiving “continued coverage pending the outcome of the appeals process.” Finally, providers must have in place an external review process that, “at a minimum, includes the consumer protections set forth in the Uniform External Review Model Act promulgated by the National Association of Insurance Commissioners and is binding on such plans.”
Given the high level of variability and dissensus likely to continue to govern medical necessity decision making at the level of physician judgment and provider approval, the qualitative shaping of the appeals processes over which the HHS does have significant oversight power will be key. Section 1101(f) of the ACA charges the HHS secretary with establishing appeals processes that will “enable individuals to appeal a determination under this section; and . . . procedures to protect against waste, fraud, and abuse.” Only if the HHS—under pressure from patient advocacy groups—is able to infuse the considerations this article has reviewed into the establishment of its formal processes will the ACA effectively connect its impressive benefits provisions to the delivery of medical care.
The qualitative shaping of medical necessity determinations made on appeal depends, of course, on the specific protocols of appeals processes themselves. While internal appeals administered by insurance providers are often treated with justifiable skepticism, external appeals—by dint of their formal externality from the business interests of providers—as intended to instill confidence in medical necessity decision making. Yet this confidence gestures toward the possibility of certain institutions making determinations that are, in a sense, “real” necessity determinations, unencumbered or corrupted by interests adverse to those of patient care. The question, therefore, is what checks these appeals processes might have from being mere shell games in which necessity determinations are made by different institutions but still fail to meet patients’ needs. To this end, consider that the ACA promises to guarantee the integrity of medical necessity decision making by mandating that independent review organizations are subject to the oversight of accreditators such as the Utilization Review Accreditation Commission (URAC). URAC cultivates its reputation of objectivity through its formal independence from industry stakeholders such as medical and pharmaceutical interests and from professional organizations such as the American Medical Association, as well as its diverse board of directors, which are drawn from a wide range of constituencies.
Understanding how medical necessity determinations function under the ACA requires grasping the tensions and synergies that arise between particular patient assertions, physician determinations, provider acceptance or rejection, internal and external appeals, accreditations, and other forms of oversight. Yet if the ACA's mission of patient-centered care is to become a reality, one must also take care to not buy in to an epistemology in which one envisions the existence of a “real” or “true” medical necessity or a medical necessity standard that is untouched by social power.
Consider, for example, the assumptions of URAC's claim that its “accreditation ensures that [independent review organizations] are utilizing the most appropriate clinical and administrative procedures” (2010, 3). The existence of appeals—even “objective” or “disinterested” appeals—does not guarantee that independent review organizations or URAC, in its supervisory role, are not encumbered by and subsumed in problematic conceptions of the body, health, wellness, functionality, and beyond. As Rosenbaum notes, “certain types of medical necessity decisions involve purely legal interpretations related to the content of coverage,” while “[a]ppealable cases are those that rest on factual questions to be resolved by a decision maker” (2007, 442). It is the status of the decision, not the simple existence of an appeal, that matters.
While the ACA brings us far toward developing a more systematic approach toward medical necessity decision making—for example, through URAC's attention to reviewers’ credentials and conflicts of interest—it does not possess the means to resist the various normalizing and disciplinary functions that have long plagued medical care for those groups that I have reviewed here. Rather than establishing standards or engaging the normative dimensions of medical necessity as it was understood in the pre-ACA era, the ACA puts stock in the abstract ideas of externality and independence. Moreover, it is precisely because of their perception as impartial that groups seeking to ensure that ACA antidiscrimination provisions, as well as the pursuit of ethical and efficacious health care more generally, must remain attuned to the unstated normative dimensions of these bodies’ decision-making processes.
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- The Politics of Defining Medical Necessity
- Contentious Areas of ACA Implementation and Medical Necessity
The HHS's efforts will undoubtedly require the engagement of a politics of definition, particularly concerning the most basic concepts of “health,” “disease,” and what does and does not constitute a legitimately “medical” question. While this definitional work is difficult, nations that have established national health care systems have seen that although it is possible to establish good working definitions that can facilitate efficacious and fair health systems, this does not mean that such efforts will put an end to political debates over key terms. This is as it should be. Rather, the need for greater standardization of key concepts such as medical necessity will likely give rise to a new politics of definition.
While this might be deflating from certain policy perspectives, it should be a welcome addition to debates about the nature of American social commitment. One of the effects of the United States’ disorganized patchwork of private, quasi-public, and public health care systems is that Americans have never had a broad-based discussion about basic health care objectives. Though the HHS is likely to take the lion's share of criticism as ACA implementation runs its course, the agency's efforts will constitute a starting point rather than an attempt at attaining a point of closure.
While the politics of medical necessity is certain to intensify, there are some important areas in which the terms of this politics can, at a minimum, be made more explicit and more clearly articulated. A key battleground for medical necessity under the ACA will be the Uniform Glossary, which the ACA tasks with defining key terms that are, in turn, presented in a “culturally and linguistically appropriate manner” (§ 1101). As Cartwright-Smith (2012) asks, “Will the definitions of terms in the uniform glossary operate to improperly limit coverage? The glossary is supposed to provide common definitions in a standard format to inform and empower consumers. However, the definitions necessarily address specific areas of coverage and services, and therefore may operate in practice as contract terms rather than general information.” Critically, “the definition of medical necessity in the proposed template has been highlighted [by Rosenbaum and others] as overly restrictive and opening the door to cherry-picking by insurers,” precisely because the practice of defining medical necessity in the abstract does not solve the question of how physicians and insurers will make particular medical necessity determinations within these broader contexts.
Thus, while the glossary will be useful for clarifying less contested everyday terms—such as “deductible” and “co-payment”—it may serve to make highly variable and contested terms such as “medical necessity” seem less up for grabs and more fixed than they actually are. This could short-circuit critical engagements with medical necessity by introducing an illusion of fixity. Transparency in medical necessity decision making is therefore essential to keeping the term part of ACA implementation developments. Rosenbaum (2012) asks, for example, whether plans should be required to make clear whether and how “they take health or disability status into account when making coverage decisions (for example, utilizing a full recovery standard when determining if a particular treatment will be considered medically necessary)?” The more we know about how insurers calculate medical necessity, the more health advocates and policy makers will be able to question the appropriateness, desirability, social acceptability, and other qualitative dimensions of those calculations.
The more we know about how insurers calculate medical necessity, the more health advocates and policy makers will be able to question the appropriateness, desirability, social acceptability, and other qualitative dimensions of those calculations.
This article has sought to show that because benefits operate on the level of abstract categories rather than applications to particular patients, the ACA does not directly address the contexts within which medical necessity claims are made or how the needs of particular patients will be accounted for. As implementation proceeds, however, the HHS could take steps to mitigate the unpredictability or arbitrariness of medical necessity determinations without undoing its promise to recognize existing utilization practices already in place before the ACA became law. It could, for example, advance a general definition of medical necessity that accords with the goals of benefits, in essence aligning the two tiers of coverage determination, which would create a role for federal oversight only in those instances in which systematic discrimination could be proven. This would more clearly articulate the political difference between universal coverage benefits and particular medical necessity determinations, ensuring that the latter will not bar patients from the care that they, their doctors, or another party feel that they need. Such an effort could resolve tensions in disability provisions by following the so-called Stanford definition of medical necessity developed by Singer and Bergthold (2001b), which includes the treatment of “conditions” in addition to injuries. Some issues—as explained earlier—are not so easily remedied, however, for the simple reason that their claims often are rooted not in conditions but in identities seeking state recognition and protection. To this extent, the Stanford definition holds promise that expanded benefits will, in turn, broaden medical necessity's scope, as before the ACA, vulnerable populations were largely on their own in securing medically indicated interventions when they fell outside the scope of benefits. Indeed, a stronger and more active politics of medical necessity could serve as a powerful lever against too-narrow benefits packages, reversing the relationship between benefits and medical necessity determinations so that the latter could impact the former.
The most pressing question for ACA implementation with regard to medical necessity is the integrity of the process by which boundaries between the necessary and unnecessary are formed. The development of a set of established criteria or a consensus definition is insufficient unless they remain the contingent outcome of a collaborative process that is inclusive of a range of values, bodily contexts, and life goals—each of which requires ongoing political engagement in addition to medical decision making. To this extent, the fate of the development of an ethical, patient-centered, and socially inclusive medical necessity standard under the ACA will depend not only on the work of research institutions but also on their ability to effectuate change and operationalize their findings at the level of the utilization of care.
Additionally, this will require extending the ACA's antidiscrimination ethos to the level of utilization without triggering largely unfounded concerns about “government takeover” or disrupting the perceived fabric of doctor–patient relations. Politically, the result of these efforts has had the unfortunate result of provoking cries of “death panels” and other unhelpful ideological canards. Thus far, the HHS has displayed a great willingness to work with and take seriously the findings of the Institute of Medicine and other well-regarded institutions that issue carefully crafted reports on medical necessity. Yet a significant challenge exists to the extent that pharmaceutical and medical companies (and their lobbying professional organizations) could—and, if history serves as a predictor, are likely to—undermine this process by controlling the terms of discourse. As the health economist Gavin Mooney (2011) has argued, quality decision making about medical priorities that meet a society's needs (rather than the needs of business constituents) is rarely achieved when professional organizations are given disproportionate power in these debates.
Perhaps most important for the future efficacy of the American health care system generally is the degree to which Americans are willing to acknowledge that ACA implementation is a political process that reflects the nature of Americans’ social commitments to and cohesion with one another rather than obeisance to a fictive, objective medical necessity standard that has never—and will never—exist. Accordingly, disability, LGBT, women's, and other advocacy groups will play an essential role in ACA implementation to the extent that they apply pressure on the various agencies tasked with giving shape to ACA medical necessity standards by calling attention to bias at the level of utilization.
These advocacy groups will need to see the question of medical necessity as a matter not only of public administration and policy but also of politics. Whereas medical necessity determinations made by health care providers tended in the past to be “confidential and not subject to public dialogue” (Udow-Phillips 2012), the ACA takes steps to bring the decision-making process out into the open. Though it does not guarantee particular judgments or constrain the act of judging in ways that are likely to please those for whom antidiscrimination mechanisms are of central importance, the ACA promotes the kind of transparency that will be useful for developing a meaningful advocacy for the recognition of patients’ rights and, indeed, needs. Insisting that this process be “rational” and “evidence based”—rather than the emotional and personal issue that it is—will only reduce it to something deceptively simple and technocratic. Letting the politics of medical necessity during ACA implementation remain messy might be a prerequisite to that politics’ efficacy and ethicality.
Advocacy for patients’ rights, therefore, will need to be multileveled, aimed not only at the federal government but also at generating consensus on the state level and among key professional associations and other actors. While a national discussion about what does and does not constitute medical necessity might be preferable toward the end of creating an efficient American health care system, the HHS's decision to devolve some of the hard questions about medical necessity to the states may be politically astute. Even as this happens, however, it is crucial that these state-level discussions inform a broader discussion about medical necessity on the national level. Most importantly, on whatever level they occur, these discussions must emphasize the fact that medical necessity decision making is not a simple empirical matter but an arena laden with political and social values congealed within the language of medical necessity. Additionally, more expansive definitions of medical necessity do not necessarily mean rising health costs, particularly because, as Wennberg (2010) has argued, providing patients with a broad range of options—shaped not only by their physicians’ opinions—may in fact reduce health costs as patients choose more conservative treatments. Transparency and structured conflict over values could diffuse, or at least open up, many of the most pressing political problems in health care utilization so that they are not misrepresented.
Transparency and structured conflict over values could diffuse, or at least open up, many of the most pressing political problems in health care utilization so that they are not misrepresented.
Only such transparency, moreover, can cast ACA implementation—and the ACA itself—in its full light, where all actors involved acknowledge that issues such as the difference between cosmetics and medical necessity, the importance of mental health and preventive services, are and always have been part of a project of social design. The alternative—such as leaving medical necessity to market forces, unevenly constructed contracts between providers and consumers, or determinations by industry stakeholders—will only ensure that Americans continue to defer the question to future generations, with tremendous and potentially calamitous effects on their well-being.
- Top of page
- The Politics of Defining Medical Necessity
- Contentious Areas of ACA Implementation and Medical Necessity
The author would like to acknowledge helpful feedback from three anonymous reviewers at PAR, as well as from Frank Thompson and the PAR editors.
- Top of page
- The Politics of Defining Medical Necessity
- Contentious Areas of ACA Implementation and Medical Necessity
- This stands in stark contrast to the marketplace envisioned by organizations such as the Cato Institute, which advocates the proliferation of different coverage packages and institutional approaches to utilization that are governed only by contractual relations with consumers who sign up for the plans (Morreim 2001). As Michael Cannon, Cato's director of health policy studies, asks in a blog post titled “There Is No Objective Definition of Medical Necessity,” “who will do a better job of deciding whether and when hip replacements or Viagra are ‘medically necessary’? Regulators? Or patients choosing health plans (in part) based on how those plans define medical necessity?” (Cannon 2012). Cannon's suggestion is that approaching the meaning of medical necessity as a matter of policy will fail, presumably because of its complexity. Yet the Cato perspective on these matters misses one of the most basic reasons for health insurance itself, namely, that patients do not have the knowledge about their needs that would be necessary to make ex ante decisions about them. Such knowledge would be required for patients to choose plans that would meet their health needs—assuming that they could afford such plans—before they get sick. This contract approach also assumes at least some degree of technical understanding of medical necessity decision making itself. More generally, however, such an approach undermines the pursuit of broad-based health objectives, which arise not from individual ex nihilo determinations but from carefully constructed policies for addressing the needs of populations.
- As of this writing, shortly after the PCORI's first round of research funding was announced, the institute has not funded any LGBT-specific studies.
- For example, in her memoir recounting her experience with cancer, Audre Lorde (1997) explains that her health (and especially health-related aesthetic) objectives as a black, lesbian, feminist poet are different from those of others. Ideally, a patient-centered medical necessity should reflect such contexts.
- Top of page
- The Politics of Defining Medical Necessity
- Contentious Areas of ACA Implementation and Medical Necessity
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