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The Struggle for Healthcare Justice: It’s Movement Time – Non Profit News

“THE LDR COVID-19 NURSE FROM NEW YORK CITY” BY STEPHEN REMICK/WWW.STEPHENREMICK.COM

This article comes from the winter 2020 edition of the Nonprofit Quarterly as part of an article series on “America’s healthcare crisis.” To learn more about this topic, please join us on Thursday, January 21st, at 2 pm EST for a free webinar on Health, Racial Disparities and Economic Justice.

Last year, Kim Altland of York, Pennsylvania, who was born with a congenital condition requiring more than fifty surgeries over his lifetime, was told by Gateway Health, the managed care organization that the State of Pennsylvania authorized to manage his Medicaid coverage, that they would not cover the custom orthopedic shoes he needed to walk.1 After Heather Waldron of Blacksburg, Virginia, received emergency intestinal surgery at a hospital owned by University of Virginia Health (UVA Health), she and her husband lost their house when the health system sued them and put a lien on their home.2 Alec Raeshawn Smith of Richfield, Minnesota, died of diabetic shock after Eli Lilly, Novo Nordisk, and Sanofi raised the price of insulin, and just a month after his twenty-sixth birthday, the day federal law made him ineligible for his mother’s insurance plan. Alec’s meager $35,000 salary forced him to enroll in an insurance plan with lower premiums but a higher deductible, meaning he had to pay the entire cost of his prescription out of pocket. He died with his insulin pen empty, just three days short of his next payday.3

Any one of these stories is unjust. The sum total is staggering, as millions of people like Kim, Heather, and Alec struggle to get healthcare every year across the United States.

Now COVID-19 is forever transforming human life in ways we are only beginning to understand. As this article goes to print, a staggering 273,581 people in the United States and 1.4 million worldwide have died in the pandemic.4 Transmission is burning faster than ever, schools and businesses are shuttered, jobs and incomes have been cut, food pantries are facing record demand, and untold evictions are looming. The emotional, social, and economic pain of the virus is unfathomable. Most enraging of all is how unnecessary this all is.

Though the pandemic was sparked by a virus, its damage is being wrought by the failure of our government and institutions to decisively implement public health measures and provide people with the economic and institutional supports they need. From Taiwan to New Zealand and Uruguay to Norway, dozens of countries have shown that the virus and its economic impacts can be controlled. By and large, the countries that have done best are those with the most economic and political equality. They provide health and economic security as a basic right of residence, not as a selective privilege, and in so doing have built people’s trust in government, in their healthcare and public health system, and between fellow citizens—trust that has been essential in managing the pandemic to the degree it has been managed.

Make no mistake: the United States has the resources and knowledge to guarantee healthcare to every single person in the country, from cradle to grave; but by granting profit-driven insurance, hospital, drug, nursing home, and hospice companies the power to ration care, policy-makers have made it so that millions of people every year forgo needed medical treatment, millions more are pushed into debt and financial turmoil by healthcare expenses, and we lack adequate trust in government, in medicine, and in one another to stage an effective response to the current crisis.

There is much blame to spread around. Craven politicians stoke racial resentment to win elections, profit-driven media and social media companies highlight conflict to drive ratings, corporate lobbyists and public relations teams warp representative government, and the entire Republican Party leadership has proven itself to be more concerned about scoring political points through repealing the Affordable Care Act and blocking Medicaid expansion than it is about getting people healthcare. But to properly understand the mess we’re in, we can’t just listen to what leaders say; we have to look at what they’ve done—at the ways in which they have chosen to structure the healthcare system.

Human Sickness and Well-Being as Market Commodities

Since around the Second World War, a series of policy decisions has turned healthcare from a fundamental human right into a profitable commodity, and sequentially concentrated enormous power in the hands of corporate boards and executives in the insurance, hospital, drug, nursing home and hospice, and other healthcare industries. There have been great steps forward—the creation of Medicare and Medicaid in 1965 was monumental—but the overall trend has been toward greater profiteering and greater concentrations of corporate power. Over the last forty years, things have gotten worse. Our troubles are rooted in three interrelated trends—privatization, inequity, and fragmentation.5 These trends have been produced by policy choices pushed by a profit-driven agenda.

Everyone recognizes that American healthcare is ailing. Yes, we have top medical professionals and the latest drugs and treatment for some; but we pay twice as much for healthcare as people in almost any other country on the planet—nearly one in five dollars in our entire economy—yet have worse public health systems, lower life expectancies, and far more health insecurity than people in any other wealthy nation. Healthcare companies are raking in monumental profits as patients and families collapse under crushing medical bills, and home health aides and other healthcare workers struggle to buy food. More than 30 million people are entirely uninsured year round,6 another 19 million are uninsured at some point each year,7 and tens of millions more are underinsured—because, despite having insurance, they are priced out of care or forced to go into medical debt, or experience other financial hardship.8 Hundreds of hospitals and clinics in rural areas and communities of color nationwide are threatened with closure;9 women’s and transgender people’s reproductive health is under assault;10 whole generations face precarious retirement without guaranteed long-term care;11 too many people with addiction or mental health problems are met with blame, criminalization, and neglect in place of effective treatment;12 and Black and Indigenous people in many parts of the country face so many health injustices that years are stolen from their lives: they die an average of ten to fifteen years earlier than white people.13 This is an inhumane denial of people’s fundamental right to health, and an antidemocratic denial of people’s power and agency over their own bodies and lives.

Since the late 1970s, profit-seeking private industries and billionaires have reshaped our social and economic lives by shifting ever more decisions away from people and the public, and pushing us all into greater and greater precarity. Many observers label this a neoliberal era, marked by deregulation, privatization, and the withdrawal of the state from providing social goods.14 While this is true, it risks obscuring an even larger increase in new forms of control, many of which are carried out by nongovernmental private actors.

Political scientists David Levi-Faur and Jacint Jordana, and sociologist John Braithwaite, call this mode of governance regulatory capitalism. It is marked by a “regulatory explosion” in which the privatization and fragmentation of healthcare and other systems produce tremendous growth in regulatory agencies, rulemaking, auditing, and other regulatory institutions and practices.15 Privatization has expanded private regulation as companies, professional associations, third-party auditors, and other extragovernmental parties create, monitor, and enforce their own rules and regulations. It has likewise expanded public regulations as professional associations, consumer groups, unions, social movements, and, especially, corporations have lobbied for laws and policies that protect their interests.

Law professor Allison K. Hoffman similarly describes modern American healthcare as a market bureaucracy, in which idealized, empirically unfounded theories of market competition lead policymakers to put immense policy and regulatory effort toward constructing and maintaining market competition within and between healthcare industries. These “competition-based policies,” Hoffman explains, “have required armies of health regulators, reams of regulation, and seemingly endless evaluation and adjustment by technocratic experts—to no avail[.…] The result is a market-lubricating regulatory scaffold—a bureaucracy as vulnerable to capture and at least as large as what more direct regulatory approaches would likely produce.”16 To set up and run the Affordable Care Act’s market exchanges, for example, the federal government and states spent tens of billions of dollars, the Department of Health and Human Services issued twenty-four new rules and sixty-four guidance documents, and scholars, policy-makers, and the media (not to mention patients and their families) spent incalculable hours and dollars picking apart the complexities of the system—all to bolster a market structure that provides insurance for a mere 3 percent of the population.17

Nancy Fraser, Martha T. McCluskey, Suzanne Mettler, and other feminist scholars provide a complementary perspective by challenging the conventional delineation between public and private. The popularly conceived boundary between these spheres breaks down under inspection, they show, revealing sprawling public-private social and economic systems that defy simple categorization. They further demonstrate that the harsh delineation of the family and the market as “private” spheres supposedly unsuited to public regulation hurts women, “poor” and working-class communities, people of color, and others, who are dismissed as “special interest groups” whose needs and demands are in conflict with the supposed natural laws of the economy and with a presumed common good that is somehow distinct from their own.18

Applying these lenses to the governance of American healthcare and public health reveals that the problems driving health inequities are structural in nature, that they span the public and private sectors, and that public-private bureaucracies are critical sites of decision making in healthcare and other systems that deliver essential public goods.

The Toll of a Privatized, Inequitable, and Fragmented Bureaucracy

Delegating decisions to private actors is not always bad. In fact, I think we should decentralize and distribute far more healthcare decisions to patients, healthcare workers, and communities than we do. But regulatory capitalism and market bureaucracies do not deregulate decision making; they produce highly regulated, publicly supported modes of private governance that grant sweeping authority to private healthcare companies while denying healthcare, social and economic goods and services, and political power to those at the bottom of hierarchies stratified by race, gender, economic status, and other lines of difference. They cause critical harms that must be redressed in order to advance health justice and democracy.

Healthcare’s market bureaucracy subsumes fundamental political decisions about who and what we value as a society and how we want to allocate our shared resources. Healthcare companies, not democratic deliberation, decide how we price, finance, and ration care, which doctors people can see, what treatments and medicines they can get, and whether or not they have a hospital in their county. Market bureaucracy removes these decisions from the public sphere by turning them over to healthcare companies and professional associations; delegating them to professional analysts and managers, who are deemed to operate above politics in the realm of expertise, professionalism, science, rationality, and objectivity; shifting responsibility onto families and individuals through legal structures and ideological constructions of consumerism and moral worth; and leaving decisions to obscure, unaccountable “market forces” that supposedly exist outside of the laws and institutions that create markets.19

Overreliance on markets for researching, financing, and delivering healthcare (and housing, education, and income) also leads to failure in upholding the government’s obligation to meet our fundamental needs, and bestows the power to allocate and withhold essential care and services to private insurance, hospital, drug, and nursing home and hospice companies with financial incentives to ration access. This harms our public health and puts everyone but the wealthiest few at risk of having to forgo needed medical care or take on unpayable debt, and especially hurts “poor” and working-class people, women, LGBTQ communities, immigrants, Black, Indigenous, and other people of color, people with chronic illnesses or disabilities, and above all, people who fall at the intersection of these and other hierarchies.20

Nearly Everyone’s Hurting—But Not Everyone’s Hurting Equally

Health law and healthcare’s market bureaucracy sort people into administrative categories according to employment status, income, age, disability status, immigration status, family status, and a host of other factors, granting different groups of people separate-and-unequal coverage and separate-and-unequal care. Because these categories map onto differences in education, income, jobs, housing, and criminal justice, they also replicate and amplify broader racial, class, gender, and other disparities.

Thus, for example, regardless of people’s medical needs, citizens are deemed worthy of publicly subsidized care, while undocumented immigrants are not; people with full-time professional jobs get top-line care, while part-time, temporary, gig-economy, and informal-economy workers, small-business employees, and unpaid caregivers do not; and people in wealthy white neighborhoods enjoy ready access to highly resourced hospitals and nursing homes, while people in working-class Black neighborhoods do not.

Though often administered by healthcare companies, these bureaucratic categories are created by public policy and enforced by state power. Since the late 1970s, federal, state, territorial, and local governments have dramatically expanded militarized and bureaucratic forms of population control. They target Black, immigrant, Muslim, and other communities with policing, immigration enforcement, the War on Drugs, the War on Terror, harsh sentencing, and mass incarceration—all forms of criminalization and punishment that directly harm people’s physical and mental health. And by administratively categorizing people with labels like “felon” and “undocumented,” they deny people jobs, public and private housing, SNAP food stamps and TANF income subsidies, grants and loans for higher education, and health insurance. Meanwhile, they continually scrutinize and cut federal and state budgets for Medicaid, SNAP, TANF, and other means-tested programs that serve a broad section of people with low incomes—and especially women of color—and have instituted onerous workfare, eligibility, and reporting requirements, invasive drug testing, and digital surveillance, all of which are designed to stigmatize and disqualify people by the tens of thousands from eligibility for public supports. Wealthier and whiter people who receive tax subsidies for employer-sponsored insurance or itemized tax deductions do not have to endure such bureaucratic burdens, barriers, and indignities.

These systematic, racialized patterns of exclusion and inequity are not accidental but an essential strategy for justifying privately controlled, for-profit healthcare.21 Sorting people into a hierarchy of deservingness capitalizes on racist, anti-Black, and anti-immigrant ideologies to generate the idea that some people do not deserve care because they are either irresponsible or have chosen their fate. This is profitable, because it undercuts political demands for universal, publicly financed healthcare, and also legitimizes the separate-and-unequal tiers of coverage that enable insurance companies to cherry-pick healthier and wealthier patients, ration coverage and care to varying degrees to nearly everyone, and shift the least profitable patients—people with low incomes and people who need more care—onto public programs.

In addition, fragmentation produces enormous complexity that makes it nearly impossible for everyday people to navigate health bureaucracies, produces unnecessary administrative costs that shift resources away from more important uses, makes it difficult for individuals and groups without paid staff and technical expertise to engage in regulatory governance, and makes it onerous for legislators to monitor and hold regulatory agencies and industries accountable.22 All of this insulates power-holding decision makers, both public and private, from accountability to everyday people, allowing them to act with virtual impunity.

Market bureaucracy also erodes our very notions of citizenship and democracy by framing members of society as consumers, clients, or holders of individualistic legal rights, rather than as active participants in cogovernance who hold collective rights and mutual responsibilities.23 Shrinking the permissible space for citizenship to the voting booth deprives people of democratic spaces in which they can contest over real levers of power, and dissuades people from more actively engaging.

Taken together, the privatization, inequities, and fragmentation of market bureaucracy reveal a healthcare system in which power and control are largely situated in an unaccountable private bureaucracy dominated by enormous insurance, hospital, drug, and nursing home and hospice companies. Patients, doctors, nurses, caregivers, families, and the public have largely been stripped of real freedom, autonomy, and power.

These are not natural phenomena but the result of policy choices. The United States stands alone in the wealthy world for choosing to leave its people uninsured and insecure, choosing to privatize and commodify such large swaths of the health insurance and healthcare delivery systems, choosing to maintain such unequal and exclusionary access to healthcare, and choosing to treat illness, injury, disability, addiction, mental health, reproductive care, dental care, and other health needs as individual burdens rather than mutual needs and collective responsibilities. So far we have allowed politicians to make these choices—but we can do better.

Toward Universal, Just Healthcare: The Role of Nonprofits and Philanthropy

To realize a just healthcare system, we must drive toward two goals. First, for healthcare to truly be universally and equitably guaranteed, we must finance and deliver it as a public good, freely available to all solely on the basis of medical need. Human health needs should guide medical research, medical education, and how we pay for and deliver healthcare—not profits, poverty, immigration status, or any other factor. Second, to advance health equity and uphold democratic values, we must shift treatment decisions from healthcare companies to patients and their doctors, and shift broader governance decisions about how we meet our collective health needs from market bureaucracies to the public—and especially to communities facing the sharpest health injustices.

The Medicare for All Act (H.R. 1384) exemplifies the kinds of policy changes that are needed to transform healthcare from a private commodity into a public good. Medicare for All would eliminate profit motives from health insurance by directly paying for all medically necessary care instead of through insurance companies; requiring hospitals, clinics, drug companies, medical device companies, and other providers and manufacturers providing services through Medicare to operate as nonprofits; establishing hospital and drug prices in the interest of the public, not profit maximization; and financing construction costs for hospitals and clinics, steering capital investments to where they’re most needed.24

The federal government has a crucial role to play in guaranteeing healthcare as a human right and a public good by equitably raising the revenue needed to finance the healthcare system, directing those resources to where they’re needed, and taking a more direct public role in delivering care through public hospitals and clinics, drug research, drug manufacturing, and other activities. But centralized administration could never on its own achieve a healthcare system that is responsive to the unique needs of such a large and diverse nation. Along with state, territorial, and local governments, nonprofits and philanthropy have a key role to play in administering and delivering healthcare in local communities.

But it is not enough for the government to simply delegate responsibilities to nonprofits. Delegating responsibilities without clear purpose and accountability risks further entrenching the privatization, inequity, and fragmentation already plaguing the healthcare system.

In fact, many of the worst actors in today’s healthcare system are tax-exempt nonprofits. The nonprofit University of Virginia Medical Center didn’t just put a lien on Heather Waldron’s house: it sued patients more than 36,000 times for a total of over $106 million.25 The nonprofit University of Pittsburgh Medical Center (UPMC) has been called out by the U.S. Office of Civil Rights for relocating a hospital from a Black neighborhood to a white one,26 and by Pennsylvania’s attorney general, who sued UPMC for denying patients care and for acting “in callous disregard of the treatment disruptions and increased costs suffered by its patients” despite receiving $1.3 billion in public subsidies.27 And all over the country, dozens of nonprofit insurance companies (which pay their CEOs an average of $3.5 million per year)28 routinely deny patients coverage and care, and fraudulently overbill the federal government billions of dollars.29 All of these companies are, legally speaking, tax-exempt nonprofits, but they are nevertheless caught up in a chase to maximize revenue, minimize costs, and claim ever greater market power—a chase that levies heavy costs on patients, their employees, and the public. Nor are these companies bad apples. Such behavior has become standard practice in the hospital and insurance industries.

Hospital and insurance companies aside, nonprofits did not produce the failures and abuses of the U.S. healthcare system; but in order to win health justice once and for all, both nonprofits and philanthropy will have to fight for and build solutions:

  • They can support advocacy and organizing to win policies like Medicare for All that decommodify healthcare and treat it as an inviolable human right and a universal, equitable public good.
  • They can help build equitable, democratic, accountable systems of participatory governance that redistribute power to communities facing health injustices and build greater democratic control into every part of the healthcare system.

New public policies and new models of participatory governance, as well as robust, enforceable accountability, will be critical to putting decision-making power into the hands of patients, healthcare workers, and the public overall. Far too many nonprofits are led exclusively by professional staff and boards, and far too many are more accountable to funders than to people struggling on the front lines of the healthcare system. Building a more just healthcare system will require all of us—in government, foundations, nonprofits, and other institutions—to open up meaningful spaces for democratic participation, and in so doing relinquish some control over the agendas, priorities, and decisions that emerge from those spaces.

As we enter into what will no doubt be a contentious political environment in 2021, there will be an impulse in government, nonprofits, and philanthropy to double down on professional expertise by shifting health policy decision making away from factious and often ineffectual legislatures and partisan executives to supposedly apolitical markets and appointed managers. There will also be a temptation to sidestep the deeper, thornier problems in the healthcare system and focus instead on tackling discrete, manageable pieces and legal and technical solutions that incrementally improve outcomes. But the goal of depoliticizing health governance is an illusory one. Structuring and managing our health systems requires making inherently political judgments about who and what we value, where we want to put our resources, and how we sort out our priorities. All the important decisions in healthcare governance are political. If we care about health justice, we must be clear about the purpose of the healthcare system, the dangers of profiteering, and what’s needed to effect real changes.

Yet though we must be clear on our values and goals and what we’re up against, there is no clearly defined path forward. Change always comes unpredictably and unevenly; attempts to chart the way forward raise as many questions as answers. How is it possible to transform a healthcare system in which there are so many vested interests, especially such powerful healthcare industries? What would it take to build enough power to overcome this opposition? How can nonprofits work with government to help build structures and processes to democratize decision making and enhance accountability, and how can they do so in a way that authentically shifts power to the communities that are most impacted by health injustices? Only by pushing forward together and working to answer such questions as we go can we move toward a healthcare system that holds health, and not profit, as its core principle.

Notes

  1. In Ben Palmquist et al., A Public Healthcare Advocate for Pennsylvania (Philadelphia, PA: National Economic and Social Rights Initiative/NESRI, now Partners for Dignity & Rights, and Put People First! Pennsylvania, forthcoming).
  2. Jay Hancock and Elizabeth Lucas, “‘UVA has ruined us’: Health system sues thousands of patients, seizing paychecks and putting liens on homes,” Washington Post, September 9, 2019.
  3. Bram Sable-Smith, “Insulin’s High Cost Leads To Lethal Rationing,” NPR, September 1, 2018.
  4. Coronavirus World Map: Tracking the Global Outbreak,” New York Times.
  5. Sabeel Rahman, “Constructing Citizenship: Exclusion and Inclusion through the Governance of Basic Necessities,” Columbia Law Review 118, no. 8 (2018).
  6. The Congressional Budget Office projects that following COVID-19, 31.5 million people will be entirely uninsured for all twelve months of 2021—up from recent years, when the Census Bureau, Urban Institute, and Centers for Medicare & Medicaid Services calculated that between 28.6 million to 30.7 million people were uninsured all year. See Kevin McNellis, Carolyn Ugolino, and Emily Vreeland, Federal Subsidies for Health Insurance Coverage for People Under 65: 2020 to 2030 (Washington, D.C.: Congressional Budget Office, September 2020); United States Census Bureau, “Selected Characteristics of Health Insurance Coverage in the United States,” accessed December 16, 2020; Linda J. Blumberg et al., Characteristics of the Remaining Uninsured: An Update, U.S. Health Reform—Monitoring and Impact (Robert Wood Johnson Foundation and Urban Institute, July 2018); and CMS.gov, “National Health Expenditures 2019 Highlights,” accessed December 16, 2020.
  7. Sara R. Collins, Herman K. Bhupal, and Michelle M. Doty, Health Insurance Coverage Eight Years After the ACA: Fewer Uninsured Americans and Shorter Coverage Gaps, But More Underinsured (New York: Commonwealth Fund, February 2019), 23.
  8. Surveying adults under sixty-five, the Commonwealth Fund classified 43.8 million people as uninsured in 2018 (defined as having deductibles greater than 5 percent of household income, total out-of-pocket healthcare costs greater than 10 percent of their income for households above 200 percent of the federal poverty line, or total out-of-pocket costs greater than 5 percent of income for households under 200 percent of the federal poverty line). But this definition is narrow. By Commonwealth’s own definition, an additional 25 million of those classified as “not underinsured” nevertheless had unaffordable medical bills, carried medical debt, or had to change their way of life to pay off medical bills. See Collins, Bhupal, and Doty, Health Insurance Coverage Eight Years After the ACA, 24.
  9. Partners for Dignity & Rights, “Hospital Closures,” Health Care by the Numbers, May 4, 2020.
  10. Maya Manian, “Reproductive Justice Under Assault at the Supreme Court,” Magazine, July 9, 2020; and Sophia Serrao, “We Must Promote Gender-Inclusive Reproductive Health Care,” National Partnership for Women & Families blog, July 2, 2020.
  11. Keya Vakil, “The Alarming Reality of America’s Elder Care Crisis,” Courier Newsroom, May 12, 2020.
  12. Methadone Is Better Than Jail: A conversation with Sandie Alger, former inmate and recovering heroin addict,” The Marshall Project, May 7, 2015.
  13. The Center on Society and Health at Virginia Commonwealth University, “Mapping Life Expectancy,” September 26, 2016; S. Jay Olshansky et al., “Differences In Life Expectancy Due To Race And Educational Differences Are Widening, And Many May Not Catch Up,” Health Affairs 31, no. 8 (August 2012): 1803–13; and Shelby Lindsay, “Native Americans close the gap—almost—on U.S. life expectancy,” Cronkite News, May 10, 2018.
  14. David Harvey, A Brief History of Neoliberalism (Oxford, U.K.: Oxford University Press, 2005), 3.
  15. See David Levi-Faur, “Regulatory capitalism,” in Peter Drahos, ed., Regulatory Theory: Foundations and Applications (Acton, Australia: ANU Press, 2017), 289-302; David Levi-Faur, “Regulatory capitalism and the reassertion of the public interest,” Policy and Society 27, no. 3 (February 2009): 181–91; David Levi-Faur and Jacint Jordana, “The Rise of Regulatory Capitalism: The Global Diffusion of a New Order,” ANNALS of the American Academy of Political and Social Science 598, no. 1 (March 2005): 200–17; and John Braithwaite, “Neoliberalism or Regulatory Capitalism,” Regulatory Institutions Network, RegNet Occasional Paper No. 5 (October 2005).
  16. Allison K. Hoffman, “Health Care’s Market Bureaucracy,” UCLA Law Review 66, no. 6 (2019): 1934.
  17. Ibid., 1963–65.
  18. See Nancy Fraser, “Rethinking the Public Sphere: A Contribution to the Critique of Actually Existing Democracy,” Social Text, no. 25/26 (1990): 56–80; Martha T. McCluskey, “Deconstructing the State-Market Divide: The Rhetoric of Regulation from Workers’ Compensation to the World Trade Organization,” in Feminism Confronts Homo Economicus: Gender, Law, and Society, eds. Martha Albertson Fineman and Terence Dougherty (Ithaca, NY: Cornell University Press, 2005): 147–74; and Suzanne Mettler, “Reconstituting the Submerged State: The Challenges of Social Policy Reform in the Obama Era,” Perspectives on Politics 8, no. 3 (September 2010): 803–24.
  19. See, for example, Andrea Cornwall and Vera Schattan P. Coelho, “Spaces for Change? The Politics of Participation in New Democratic Arenas,” in Andrea Cornwall and Vera Schattan P. Coelho, eds., Spaces for Change? The Politics of Citizen Participation in New Democratic Arenas (New York: Zed Books, 2007), 10–11; and Martha Albertson Fineman, “The Vulnerable Subject: Anchoring Equality in the Human Condition,” Yale Journal of Law and Feminism 20, no. 1 (2008): 1–23.
  20. This has been looked at through the frame of domination and vulnerability frameworks. See K. Sabeel Rahman, Democracy Against Domination (New York: Oxford University Press, 2016); Fineman, “The Vulnerable Subject”; and Yasmin Dawood, “The Antidomination Model and the Judicial Oversight of Democracy,” Georgetown Law Journal 96, no. 5 (June 2008): 1411–85.
  21. See, for example, Wendy Brown, Undoing the Demos: Neoliberalism’s Stealth Revolution (New York: Zone Books, 2015).
  22. For discussion of the exclusionary complexity and inscrutability of healthcare bureaucracy, see Hoffman, “Health Care’s Market Bureaucracy,” and James A. Morone, “The Health Care Bureaucracy: Small Changes, Big Consequences,” Journal of Health Politics, Policy and Law 18, no. 3 (Fall 1993): 723–39.
  23. See Lindsay F. Wiley, “From Patient Rights to Health Justice: Securing the Public’s Interest in Affordable, High-Quality Health Care,” Cardozo Law Review 37, no. 3 (February 2016), 833–89; Cornwall and Coelho, “Spaces for Change?”; and Hoffman, “Health Care’s Market Bureaucracy.”
  24. Human Rights Assessment of the Medicare for All Act of 2019 (New York: National Economic & Social Rights Initiative/NESRI, now Partners for Dignity & Rights, 2019).
  25. Hancock and Lucas, “‘UVA has ruined us.’”
  26. “Resolution Agreement Between the U.S. Department of Health and Human Services Office for Civil Rights and The University of Pittsburgh Medical Center,” Transaction Number: 10-106043 (August 31, 2010).
  27. Commonwealth of Pennsylvania v. UPMC, No. 334 M.D. 2014.
  28. Alia Paavola, “Top 5 nonprofit hospitals for executive pay,” Becker’s Hospital Review, June 18, 2019.
  29. Fred Schulte and Lauren Weber, “Medicare Advantage Plans Overbill Taxpayers By Billions Annually, Records Show,” NPR, July 16, 2019.



Originally Published by nonprofitquarterly.org

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