This article explores how health governance has evolved into an enormously complicated—and inequitable and exclusionary—system of privatized, fragmented bureaucracy, and argues for addressing these deficiencies and promoting health justice by radically deepening democratic participation to rebalance decision-making power. It presents a framework for promoting four primary outcomes from health governance: universality, equity, democratic control, and accountability, which together define health justice through deep democracy. It highlights five mechanisms that hold potential to bring this empowered participatory mode of governance into health policy: participatory needs assessments, participatory human rights budgeting, participatory monitoring, public health care advocates, and citizen juries.

The ACA shifted U.S. health policy from centering on principles of actuarial fairness toward social solidarity. Yet four legal fixtures of the health care system have prevented the achievement of social solidarity: federalism, fiscal pluralism, privatization, and individualism. Future reforms must confront these fixtures to realize social solidarity in health care, American-style.

Medicaid is uniquely equipped to serve low-income populations. We identify four features that form the “soul” of Medicaid, explain how the administration is testing them, and explore challenges in accountability contributing to this struggle. We highlight the work of watchdogs acting to protect Medicaid and conclude with considerations for future health reform.

It is no exaggeration to say that American health policy is frequently subordinated to budgetary policies and procedures. The Affordable Care Act (ACA) was undeniably ambitious, reaching health care services and underlying health as well as health insurance. Yet fiscal politics determined the ACA’s design and guided its implementation, as well as sometimes assisting and sometimes constraining efforts to repeal or replace it. In particular, the ACA’s vulnerability to litigation has been the price its drafters paid in exchange for fiscal-political acceptability. Future health care reformers should consider whether the nation is well served by perpetuating such an artificial relationship between financial commitments and health returns.

Since its enactment, the Affordable Care Act (ACA) has faced numerous legal challenges. Many of these lawsuits have focused on implementation of the law and the limits of executive power. Opponents challenged the ACA under the Obama Administration while supporters have turned to the courts to prevent the Trump Administration from undermining the law. In the meantime, Congress remains gridlocked over the ACA and many other critical health policy issues, leaving the executive branch to adopt its preferred policy approach and ultimately leading to lawsuits. This article briefly discusses the history of litigation over the ACA and some reasons why this litigation has been so enduring. The article then identifies other areas of health policy that are or could be future targets for litigation. Finally, the article comments on the potential impact of the courts on future health reform efforts.

If federal health reforms continue to rely on employer-sponsored health care coverage, ERISA preemption reform should be part of the next steps. State-level reform has acquired greater urgency, while the justifications for preempting that source of reform has eroded. This article recommends a statutory waiver for ERISA preemption as a feasible way to adapt to these circumstances. It offers proposed statutory text for reformers inclined to pursue ERISA reform as health reform.

Out-of-network air ambulance bills are a pernicious and financially devastating type of surprise medical bill. Courts have broadly interpreted the Airline Deregulation Act to preempt most state attempts to regulate air ambulance billing abuses, so a federal solution is ultimately needed. However, in the absence of a federal fix, states have experimented with a variety of approaches that may survive preemption and provide some protections for their citizens

Health reform debate understandably focuses on large system design. We should not omit attention to the “last mile” problem of physician payment theory. Achieving fundamental goals of integrative, patient-centered primary care depends on thoughtful financial support. This commentary describes the nature and importance of innovative primary care payment programs.

This commentary describes limitations of mental health parity requirements in ensuring access to insurance coverage for mental health treatment and surveys regulatory options employed by states in Medicaid managed care programs as supplements to parity that can further reduce the risk of inappropriate denials of coverage.

Federal law often avoids setting minimum standards for women’s health and reproductive rights issues, leaving legislative and regulatory gaps for the states to fill as they see fit. This has mixed results. It can lead to state innovation that improves state-level health outcomes, informs federal health reform, and provides data on best practices for other states. On the other hand, some states may use the absence of a federal floor to impose draconian policies that pose risks to women’s and maternal health. Health reforms at the federal level must trod carefully to enable state innovation, while imposing foundational safeguards for promoting women’s health nationwide.

Disparities exist in the health, livelihood, and opportunities for the 46-60 million people living in America’s rural communities. Rural communities across the United States need a new energy and focus concentrated around health and health care that allows for the designing capturing, and spreading of existing and new innovations. This paper aims to provide a framework for policy solutions to build a healthier rural America describing both the current state of rural health policy and the policies and practices in states that could be used as a national model for positive change.

Historical foundations rooted in reproductive oppression have implications for how racism has been integrated into the structures of society, including public policies, institutional practices, and cultural representations that reinforce racial inequality in maternal health. This article examines these connections and sheds light on how they perpetuate both racial disparities in maternal health and high rates of maternal mortality and morbidity among Black women.

The government recognizes that social factors cause racial inequalities in access to resources and opportunities that result in racial health disparities. However, this recognition fails to acknowledge the root cause of these racial inequalities: structural racism. As a result, racial health disparities persist.

An estimated 6,500 undocumented immigrants in the United States have been diagnosed with end-stage renal disease (ESRD). These individuals are ineligible for the federal insurance program that covers dialysis and/or transplantation for citizens, and consequently are subject to local or state policies regarding the provision of healthcare. In 76% of states, undocumented immigrants are ineligible to receive scheduled outpatient dialysis treatments, and typically receive dialysis only when presenting to the emergency center with severe life-threatening symptoms. ‘Emergency-only hemodialysis’ (EOHD) is associated with higher healthcare costs, higher mortality, and longer hospitalizations. In this paper, we present an ethical critique of existing federal policy. We argue that EOHD represents a failure of fiduciary and professional obligations, contributes to moral distress, and undermines physician obligations to be good stewards of medical resources. We then explore potential avenues for reform based upon policies introduced at the state level. We argue that, while reform at the federal level would ultimately be a more sustainable longterm solution, state-based policy reforms can help mitigate the ethical shortcomings of EOHD.

Over the past decades, anti-cancer treatments have evolved rapidly from cytotoxic chemotherapies to targeted therapies including oral targeted medications and injectable immunooncology and cell therapies. New anti-cancer medications come to markets at increasingly high prices, and health insurance coverage is crucial for patient access to these therapies. State laws are intended to facilitate insurance coverage of anti-cancer therapies.

Using Massachusetts as a case study, we identified five current cancer coverage state laws and interviewed experts on their perceptions of the relevance of the laws and how well they meet the current needs of cancer care given rapid changes in therapies. Interviewees emphasized that cancer therapies, as compared to many other therapeutic areas, are unique because insurance legislation targets their coverage. They identified the oral chemotherapy parity law as contributing to increasing treatment costs in commercial insurance. For commercial insurers, coverage mandates combined with the realities of new cancer medications — including high prices and often limited evidence of efficacy at approval — compound a difficult situation. Respondents recommended policy approaches to address this challenging coverage environment, including the implementation of closed formularies, the use of cost-effectiveness studies to guide coverage decisions, and the application of value-based pricing concepts. Given the evolution of cancer therapeutics, it may be time to evaluate the benefits and challenges of cancer coverage mandates.

Agency is the human capacity to freely choose one’s thoughts, motivations and actions without undue internal or external influences; it is distinguished from decisional capacity. Four well-known conditions that can deeply affect agency are depression, demoralization, existential distress, and family dysfunction. The study reviews how they may diminish agency in persons whose circumstances may lead them to consider or request euthanasia or assisted suicide. Since agency has been a relatively neglected dimension of autonomous choice at the end of life, it is argued that to respect the autonomy of individuals, it is essential to establish their agency.