Although the crisis of health care in the United States is widely acknowledged ? marked by poor health outcomes, high costs, unequal access, and widening health inequities ? its structural underpinnings have not been adequately addressed, and reformers have settled on promoting piecemeal measures to avoid disruption. The human right to health care offers an analytical and advocacy framework for shifting the health care reform debate from individualist, market-based approaches to the collective responsibility for health care as a public good. Based on an assessment of the health care reform proposals put forward during the US 2008 presidential primaries, the article argues that the emerging consensus among Democrats and health care advocacy organizations on incremental, market-based reforms ignores issues of equity, participation, and accountability. Alternately, the newly popularized concept of shared responsibility would reconnect rights to responsibilities and thus reinforce the public obligation to protect and provide health care. The article concludes by introducing the Human Right to Health Program, run by the National Economic and Social Rights Initiative (NESRI) and the National Health Law Program (NHeLP), which seeks to advance the recognition of health care as a human right in the US by supporting grassroots partners and allies in their struggle for universal and equitable health care.
The dysfunctional state of health care in the United States is debated vigorously among politicians and the public alike, but few see health care reform as part of a movement to advance social and economic rights. However, the failure to develop a health care system that guarantees equal access to care for everyone can be directly attributed to successive US governments? resistance to recognizing the human right to health and health care.
Human rights offer a normative framework that enables activists and policy-makers to develop analytical and advocacy tools for assessing and changing policy and practice. Incorporating the right to health care as a starting point for health care reform in the United States is not intended as a symbolic declaration or as shorthand for promoting a specific type of health care system. Rather, doing so reflects an understanding that the crisis in health care is linked to the disregard of social and economic rights in the US more generally. Caught in a political paradigm that designates human needs as personal, market-driven choices, health care has been excluded from the shrinking domain of public goods.
These patterns reflect what is often seen as a characteristically American hostility toward any shared public obligations beyond the physical safety of individuals and their property. Contesting this view, some health care activists seek to re-appropriate and reinterpret core elements of American history and ideology to bolster their arguments for
a universal and equitable health care system. They invoke the precept of ?unalienable? rights declared by America?s founders to help build a strategic base for a uniquely ?American? human rights discourse. Other reformers find it expedient to assert their independence from Europe and Canadian health care models and proclaim an ?American? health care solution. At the same time, activists are aware that a change in language does not necessarily trigger a change in policy, as the debates in the run-up to the 2008 presidential election confirmed. For example, while Democratic candidates were united by a general commitment to ?universal? health care, what they meant was, in fact, access to insurance coverage for citizens, not guaranteed, equitable access to care for all.
Rights-based health care activism steers clear of rhetorical solutions, at the same time as it seeks to reframe the health care debate, recapture ideological terrain conceded to the Right, and advance a positive vision for change. Using the vantage point of a human rights framework, ethical principles ? or ?values? ? are the premise for action rather than a variable shaped by opinion research. These principles are needed to give a moral core to reform debates, in addition to providing analytical tools to guide policy
and practical initiatives. In this approach, analysis replaces ?messaging? driven by political expediency and instead leverages theoretical and empirical findings to make a case for re-envisioning health care as both a right and a public good.
This article focuses a rights-based lens on the US health care system and the current political debates surrounding its reform, in particular the health care policy proposals emerging in the 2008 presidential primaries. The essay begins by reviewing the distinctive characteristics of the US health care system, then looks at the political culture and values underlying this system. In particular, it reflects on the notion of ?shared responsibility,? which emerged as a normative frame in the 2008 Democratic primaries. While
signaling a discursive opening for conceiving health care as a common good, it does little to address persisting tensions and blind spots in influential health care reform proposals, notably around issues of universality and equity in health care. A human rights analysis enables us to expose these tensions and consider solutions.
Subsequent sections of the article explore recent health reform efforts at state level, then return to the national scene to further analyze the rhetoric and substantive content of reform proposals put forward during the presidential contest. A human rights lens is used to evaluate the possibilities and limits to constructive change associated with a set of health care financing and delivery strategies included, in different combinations, in the health plans of most leading presidential contenders. These strategies appear to
have set the parameters of the US health care reform debate for the rest of the presidential campaign and beyond. The article?s concluding section explores opportunities for advocacy and practice, in particular the possibility of using state-based reform efforts to advance the right to health care in the US. In closing, it discusses the strategy adopted by the Human Right to Health Program, a national collaborative program of the National Economic and Social Rights Initiative (NESRI) and the National Health Law
Health Care in the United States: the Failure to Protect Health
The United States spends more than twice as much on health care yet reports poorer health outcomes than other industrialized countries.1 Most people in the US are acutely aware of the high costs of health care, both to them as individuals and to the public at large. What remains more opaque, however, are the reasons for the mismatch between the exorbitant financial resources spent on health care and the unmet health needs of the population. While persisting health problems can to some extent be attributed to deep-seated social and economic inequalities, the role of the health care system itself in perpetuating poor health outcomes has not been widely understood.
Recent data suggest that around 101,000 deaths a year can be attributed to the underperformance of the US health care system.2
The fragmented US health care system fails to fulfill the purpose of protecting health. Financing and delivery structures are largely commercialized, and a powerful health care industry has a fiduciary obligation to shareholders and investors to make a profit, rather than to deliver and improve care. In this context, health care is treated as a commodity, traded in the marketplace via intermediaries, the insurance companies. It is offered to individuals in the form of a product or service that they, as consumers, can
choose to buy or forgo. Insurers grow their business by selling and managing insurance policies in a way that avoids, whenever possible, the delivery of an actual service ? that is, health care. This has grave consequences for health outcomes: studies have shown that maximizing profit generally correlates with minimizing care, unnecessary suffering, loss of health, and higher mortality.3 Yet there is a deeply-engrained resistance in the US to recognizing the fundamental flaws of a commoditybased approach to health care. The dominant belief in ?free markets? asserts that supply and demand of health care will self-regulate and that competition will cut costs. It accepts that access to health care is restricted to those who can afford to buy it, but assumes that prices will be reasonable because supply and demand are linked. With most products, consumers limit their demand based on price. But in the case of health care, demand is not price-sensitive, as choice disappears as soon as an individual falls sick.
Supply, on the other hand, is most profitable if care is either charged at expensive rates, in the case of providers, or avoided altogether, in the case of insurers. Unlike other businesses, insurance companies do not need to deliver a product or service in order to make money, and thus operate under incentives to reduce care.
In this market-based system, immense resources are being expended to meet industry imperatives rather than people?s health needs. Advocacy organizations estimate that $350 billion could be saved in administrative costs by moving from fragmented, for-profit financing structures to a single-payer model.4 Instead, in the current market, cost containment is pursued by pricing people out of insurance coverage, denying coverage to those with health risks, limiting coverage benefits, and penalizing doctor visits. Many people are thus denied their basic health rights.
A public safety net is in place ? albeit under constant political and financial pressures ? to support the most vulnerable populations. Children and parents living in poverty are entitled to public insurance programs, as are older people. Such public programs generally have more comprehensive medical benefits and operate more cost effectively than private health plans, although suitable providers, especially for Medicaid recipients, can be harder to find due to low public reimbursement rates. Fiscal analyses show that a large part of US health care is already publicly funded: according to official figures, 46.1% of all health expenditures are paid by the government,
including programs such as Medicaid, Medicare, State Children?s Health Insurance Program (SCHIP), Veterans Health Administration, and community health centers.5 With additional public funds used for health care tax subsidies to employers and premium payments to private insurers for covering public employees, it is estimated that the government pays for the majority of US health care expenditures.6 At the same time, 47 million people remain uninsured, and evidence suggests that 22,000 preventable deaths each year can be attributed to a lack of insurance coverage.7 Moreover, even among those with insurance, many lack access to adequate care due to insufficient
coverage benefits, high deductibles, and unaffordable co-pays.
Despite the high human and financial costs and the extremely inequitable distribution of health care in the US, there remains a resistance to devising a national health care system that could guarantee appropriate care for all. This can best be understood in the context of American exceptionalism. Health care activists run up against a political culture that regards social and economic well-being as private matters, entitlements to public services as a sign of dependency, and diversity as a barrier to shared obligations. Community ties occur primarily as bonds between individuals of common backgrounds and faiths, and society at large is united by the civic religion of patriotism, not by solidarity in relation to positive rights and substantive public goods.
Health Care Reform Debates: the Emergence of ?Shared Responsibility?
Political culture in the US has shown few instances of policy-making driven by a sense of social connectedness and mutual obligations. The solidarity required to recognize and pursue a public good, as opposed to defend negative freedoms, has been in short supply. While universal health care featured as an ambition of the Progressive Movement at the beginning of the 20th century, it was not until President Johnson?s Great Society that Medicaid and Medicare brought public health care to key disadvantaged groups, specifically the poor and the elderly. Since then, few comprehensive health care initiatives have been pursued and none has succeeded.8 Instead, the increasing
commercialization of health care financing and delivery since the 1980s has taken health care reform in the opposite direction, pushed by the political muscle of the insurance and pharmaceutical industries and culminating in hospital takeovers by Wall Street investors. Health care has become a private purchasing ?choice,? publicly traded on the stock market.
In a system characterized by insurers seeking to avoid risk and expenditures, by policyholders expecting to insure against actuarial risk, by employers passing costs on to employees, and by public programs shifting responsibility to private contractors, it seems utopian to expect any form of agreement on how to ensure that everyone receives the care they need. Yet as mainstream political discourse and policy-making have eschewed the notion of solidarity, the repercussions of this approach, measured in human lives and financial costs, have become increasingly visible.
It is at this juncture that a new concept has emerged in US health care reform debates: the idea of shared responsibility. This concept was linked to the influential 2006 health care reform in Massachusetts.9