Interacting with the American healthcare system often results in a familiar scenario for many families. A doctor prescribes a medication or treatment a patient needs, but their insurer denies coverage. One of the most common rationales for denial of coverage is that a treatment is “not medically necessary,” creating a puzzling and frustrating cycle. Perhaps the prescribed drug isn’t in the insurer’s formulary, or official list of covered medications. Maybe the insurer requires a patient take a “first-line” therapy before moving on the “second-line” medication the doctor prescribed—even if there’s a good medical reason for trying the second-line medication first. Perhaps the treatment plan doesn’t check every box of a long list of criteria that must be met for an insurer to pay for it.
These are not hypothetical scenarios. After transitioning out of my research position in academic bioethics to attend law school, I spent the summer after my first year representing New Yorkers who had health coverage denied or otherwise needed assistance navigating the fragmented, for-profit healthcare system. Even the lucky ones with “good” health insurance from their employers faced these denials, having to advocate for their basic medical needs and convince a bureaucrat they’ve never met that their prescribed care was in their best interest. Now, I work with undocumented immigrants who have serious health issues, with even more barriers to care. This work is rewarding, but extremely challenging. The healthcare system does not embrace the poor, the tired, or the huddled masses—sometimes literally—yearning to breathe free.
Notoriously, the U.S. is the only nation in the developed world that does not have a universal healthcare system, in which all its citizens and residents are guaranteed payment of their basic health expenses. Understanding why requires an examination not only of this country’s Constitution, but the values that permeate all facets of American society.
While there are many theories of rights, bioethicists often divide them into two categories: positive rights and negative rights. A positive right implies that there is an action that some entity is obligated to fulfill on behalf of someone else. If one has a right to housing, for example, someone must provide another with a place to live to fulfill the right. Conversely, a negative right is a freedom from interference, or the right not to be subjected to some action from another. The American ideal of “liberty” is a conception of negative rights: the framers of the Constitution conceived the Bill of Rights as a set of negative rights preventing government intrusion into private affairs.
Unlike many industrialized nations which guarantee basic necessities to their citizens, the U.S. Constitution primarily enshrines negative rights. The right to vote, for example, does not give citizens guaranteed access to the ballot box; the right merely requires that state actors not unduly infringe upon a person’s ability to exercise their right to vote.
Now, the only constitutionally protected right to a specific medical procedure, previously available to all Americans, is gone. In 1973, the Supreme Court held in the landmark case Roe v. Wade that the right to an abortion was constitutionally protected under the Fourteenth Amendment’s right to privacy. Just last June, the Supreme Court overturned Roe, leaving it up to the states to decide whether to protect pregnant people’s right to an abortion—and, for the first time ever, rescinding a constitutional right. Despite this despicable decision, there has been progress in the last decade as it relates to the expansion of healthcare access. The Affordable Care Act (ACA) created various checks on the health insurance industry, in the vein of negative rights. For example, health plans can’t refuse to cover someone because of a pre-existing condition. Health plans can’t discriminate on the basis of race, gender, or sexual orientation. But even though the ACA drastically reduced the number of uninsured individuals in the U.S. there will probably never be a federal or constitutional right to have basic health needs met. Even before Roe, the Supreme Court has been hesitant to create new, unenumerated constitutional rights. At this point, the right to health care that meets basic needs looks grim.
It’s here that I bid the Constitution and American law farewell in my intellectual quest to create a right to health and instead turn to the very core of what pulses through American society. No matter where one falls on the political spectrum, individualism, or an emphasis on the moral worth of an individual and one’s independence and self-reliance, is ubiquitous across American cultures. Whether it’s progressives chanting “my body, my choice” for reproductive rights, or anti-vaxxers refusing to get a COVID-19 vaccine (who themselves have a variety of political identities), or Black Lives Matter activists seeking the abolition of police and prisons, each of us wants a life that allows us to make our own choices.
Through the lens of individualism (and myopically disregarding capitalist forces underlying the for-profit healthcare system), it’s a conundrum that seeking, paying for, and receiving healthcare has become a partisan issue. All people want to make their own choices regarding their health and wellbeing. Indeed, Americans have the right to make objectively bad choices—you can choose to chain smoke cigarettes and not get the COVID-19 vaccine.
But the decisionmakers who determine what care we get covered (or not) have never even met us. The basic coverage determination procedure of all health plans, public and private, is to cover a treatment when it meets a very specific set of criteria. These standards are allegedly based on the best scientific evidence available, but often plans make these standards extremely difficult to meet. One’s health needs are inherently specific. No two broken arms—or life-threatening, aggressive types of cancer—will be the same. A restrictive list of criteria for coverage will always be under-inclusive of all who would benefit. Thus, the very nature of health insurance in the U.S. runs counter to our shared values of individualism and respect for autonomy.
Ultimately, the issue of establishing a universal healthcare system would create some right to health insurance. But a right to have one’s basic medical needs met, that has been time and again asserted by international agreements and declarations of human rights, requires a radical shift away from the realm of partisan politics toward the very heartbeat of our shared ideals.
Health—however you define it—is quite literally all we have. The pandemic has solidified this truth for many, particularly the millions of families who have lost loved ones from this preventable crisis. While there are few absolutes in the law and in life, I’ve found all my clients shared a fundamental desire to have their needs met and to have autonomy over their bodies.
But individualism and legal reform will only get us so far. Creating a right to health will only be achieved when we collectively abandon the healthcare industry, beholden only to its shareholders, and rebuild a system that evaluates each person’s needs holistically. We must vote in legislators who share these beliefs—and vote out those who don’t. The Supreme Court certainly isn’t coming to save us. But if we organize, maybe we can save ourselves.
Kelly McBride Folkers, MA, is a JD candidate at the City University of New York School of Law in Queens, New York. She is completing her clinical work at New York Lawyers for the Public Interest.