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t was just over a year ago that a little known drug, hydroxychloroquine, burst into global awareness. Since then, the rise and fall of hydroxychloroquine (brand name plaquenil) has been closely documented with all the overhyped attention given to ultimately tragic sagas. Lifted out of its invisibility as an antimalarial and immune-modulator, it was, for a moment, feted by the media as a pandemic wonderdrug. The racist and eugenicist ideology underlying the rush for hydroxychloroquine was less attended to, however. This ideology, a liberal discourse of the common good, assured the world that “no one” would be left behind.
However, for those most vulnerable - disabled, immune-compromised and elderly people intersecting Black, Indigenous and other racialised communities, the universalising sentiment of “we” or “us” inevitably, and very rapidly proved itself to be a deadly platitude. For people on hydroxychloroquine - a drug that, as testified to by disabled writer Cyrée Jarelle Johnson and others, has always been notoriously difficult to access - watching Donald Trump effortlessly mobilise the medication while disabled people grappled with global shortages, hoarding, supply chain collapses and medical gaslighting, highlighted what was always already there. The saga of hydroxychloroquine illuminated how the basis for building and upholding a hyper-individualised and nationalistic common good requires, as Johnson elucidated, the disposal and sacrifice of Black, Indigenous, brown, disabled and minoritized people.
Proposed testing around the drug’s usefulness for addressing the novel coronavirus has been rapid, chaotic and contentious. On 2 April 2020, Detroit’s Henry Ford Hospital announced that it would be undertaking clinical trials on the off-label use of hydroxychloroquine as a prophylaxis for COVID-19. The now discontinued WHIP COVID-19 was at the time billed as the first large scale US study to determine whether or not the drug could prevent or lessen the severity of symptoms and duration of the virus. With an invitation issued to frontline healthcare workers, the trial aimed to enrol 3,000 healthcare workers and first responders. Based on contested reports emerging from France and China, it was hypothesized that the drug might reduce the viral load when combined with the broad spectrum antibiotic, Azithromycin. Throughout April and May, numerous drug trials were instigated in Australia, Asia, Europe and Africa with plans for more in India, despite surfacing claims that the drug was ineffective for COVID-19. Even though caution was advised from within the medical community around the drug's dangerously adverse effects, demand for hydroxychloroquine continued to grow. The US Federal Bureau of Prisons and the Department of Veterans Affairs signed contracts to disseminate the drugs, claiming they were to be given to patients following medical protocol. That the WHIP COVID-19 trial was proposed in Detroit was significant: coronavirus has overwhelmingly affected economically poor, Black communities in the state, with many patients suffering from disease comorbidities and chronic illnesses due to systemic racism, lack of adequate health care, stable housing, amenities such as water, food and jobs. The fantasy of hydroxychloroquine pushed away these realities; the speculative benefits of an untested drug was an easier story for politicians to sell than attending to the material economic and social conditions that forced Black and brown frontline workers, poor people, incarcerated people, disabled people and the elderly into mortal risk.
The leveraging of hydroxychloroquine against the immunocompromised
The fantasy was powerful. Already from late March, hydroxychloroquine was in global demand following unverified French tests and tentative reports from the Chinese Medical Association journal. On 17 March, entrepreneur Elon Musk suggested via social media that it was “Maybe worth considering chloroquine for C19”, followed by the comment that “Hydroxychloroquine probably better”. His tweets were liked over 73 000 times. On 22 March, Donald Trump tweeted that “HYDROXYCHLOROQUINE & AZITHROMYCIN, taken together, have a real chance to be one of the biggest game changers in the history of medicine”. His tweets received over 519 000 likes and resulted in widespread panic buying and hoarding, the banning of drug exports, as well as self-medication leading to death by poisoning. In Australia, far-right mining magnate Clive Palmer bought up 32,900,000 doses of hydroxychloroquine for the national stockpile. As demand surged globally and the National President of the Pharmaceutical Society of Australia was compelled to call for the restriction of drug prescriptions as a surge of medical practitioners self-prescribing wiped out much of the still circulating stock.
Three days later, Buzzfeed News broke a story of a patient with systemic lupus erythematosus (SLE) receiving a message from her health care provider stating that she could no longer fill her prescription, because supply had been redirected toward the treatment of those critically ill with COVID-19, despite a lack of approved testing or consensus on efficacy. Her doctor's office signed off the communication with “Thank you for the sacrifice you will be making for the sake of those who are critically ill; your sacrifice may actually save lives”. When she reached out to Kaiser Permanente, the pharmaceutical company producing the drug, she was told that “prescriptions will not be filled even if written by your physician”. Testimonies from patients across the USA, Australia and the UK echoed this sudden medication vacuum, mobilising the American College of Rheumatology, the Lupus Foundation of America, the Arthritis Foundation and the American Academy of Dermatology to issue a joint statement urging US Vice President Mike Pence to “ensure continued availability of these drugs for the patients who are maintained on them to avoid disability, illness and even early death”.
Initially marketed as an anti-malarial, hydroxychloroquine has become a first defence drug prescribed for conditions like SLE and rheumatoid arthritis (RA). Both SLE and RA are chronic inflammatory conditions where the body's immune system becomes overactive and attacks skin, joints, muscles, blood and internal organs. Hydroxychloroquine modulates this immune response. For patients prescribed this medication, the consequences of medication withdrawal leads to increased disease activity such as chronic pain, skin flares, and possible organ failure, primarily of the lungs, kidneys, heart and liver. This places patients prescribed hydroxychloroquine in an unsafe situation during a pandemic. As the Lupus Foundation of America wrote, “For many people with lupus there are no alternatives to these medications…Hydroxychloroquine or chloroquine are the only methods of preventing inflammation and disease activity that can lead to pain, disability, organ damage, and other serious illness. An increase in lupus-related disease activity not only significantly impairs the health and quality of life of people with lupus but will also place further strain on health care providers and systems in a time of crisis.”
Lupus patients, due to a combination of disease activity, co-morbidities and being on immunomodulatory and/or immunosuppressive medication, are generally categorised as at higher risk of coronavirus. Many lupus patients face health disparities arising from racialised, gendered and economic discrimination; as Barber and Clarke note “SLE...disproportionately affects disadvantaged populations”. US based studies have shown that Black, Asian, Hispanic, Pacific Islander and First Nations groups are far more likely than whites to develop SLE as well as have worse disease severity, more disease manifestations and accumulate damage from disease activity more rapidly. The highest rates of incidence fall onto Black women. In the USA, over 90% of people affected by lupus are women. It is three to four times more common in African American women than in white women, with as many as 1 in 250 African American and Afro-Caribbean women being affected.
Black women also suffer from more intensive organ damage and comorbidities. According to a recent study, Black people are more than three times more likely to die from SLE and its complications and have the lowest age of death; Black, Asian and First Nations lupus patients die on average around 20 years earlier than whites with lupus. Transgender people of colour were similarly found to have higher rates of inflammatory autoimmune conditions than their white counterparts, and are exposed to more medical discrimation and violence than cisgendered people. The more severe impacts on Black and other racialised patients are not due to something innate to inflammatory diseases: structural racism determines access to, and experiences of, medical and social care. As lupus researchers noted, racial discrimination affects lupus health “through exposure, susceptibility, and responses to economic and social deprivation; toxic or hazardous conditions; socially inflicted trauma; or inadequate healthcare”. All this is to say, the people who are most and worst affected by autoimmune conditions such as lupus, and most reliant on medications like hydroxychloroquine, inhabit intersections of oppression that place them at increased social and economic risk of contracting, and being most severely affected by, coronavirus.
Trump's initial celebration of hydroxychloroquine led lupus patients to question if perhaps the long term use of the drug might boost immunity - indeed on 4 April Trump claimed at a coronavirus press briefing that “there’s a study out that people with lupus aren’t catching this horrible virus...they’re not affected so much by it”. The Rheumatology Alliance swiftly rebuked the claim, saying that “based on early data currently available in our registry, we are not able to report any evidence of a protective effect from hydroxychloroquine against COVID-19.” From anecdotal reports, lupus patients were directed by primary health practitioners to self-isolate as much and as early as possible. In the UK, lupus patients on immunosuppressive medication fell into the “shielding” category and were instructed to stay indoors indefinitely. Patients were advised to stay on their medication where they could to mitigate possibilities of an autoimmune flare, which could entail hospital admission, a situation made more precarious by accelerating bed shortages and reduced access to ongoing care (such as medication administered via IV, including chemotherapy) as resources were diverted to corona patients. Along with the sudden reduction in hydroxychloroquine, chronically ill and immunocompromised patients additionally faced uncontrolled price increases and hoarding of crucial everyday health items such as masks, hand sanitiser, alcohol wipes, latex gloves and isopropyl alcohol. There were also supply issues of over-the-counter non-steroidal anti-inflammatories such as ibuprofen and painkillers including acetaminophen.
The common good and the value of certain life
The disregard of immunocompromised chronically ill and disabled peoples speaks to larger ideological and material practices of disability discrimination, racism and eugenics that define disabled life as valuable only in its sacrifice. Across both the USA and the UK, as it became apparent that Black communities were most severely affected and at highest risk of death, followed by Indigenous and other non-white communities, there was increasing laxity around lockdown and testing laws, and a downturn in media attention. In April, several US states released triaging guidelines rationing medical care to those without disabilities and under a certain age. In Wales (UK) a general practitioner clinic urged patients with serious illnesses to complete “do not resuscitate” forms so as not to put a strain on hospital resources in case their health rapidly declined. In both the USA and UK, as in Italy, critical care consultants spoke about having to limit who would receive medical equipment such as ventilators, creating a discourse that rationalised and normalised the disposal of sick, elderly and disabled patients.
This was echoed in the proposed decimation of social care support through the UK’s rushed Emergency Coronavirus Bill. In the US, the Lieutenant Governor of Texas, Republican Dan Patrick, argued that the elderly should be willing to get sick to save the economy for their grandchildren. Collectively what was established was that, as with the hoarding and redirection of hydroxychloroquine, the pursuit of the so-called “common good” was predicated on the idea that in order for those worthy of life to live, others, less worthy, must be sacrificed.
The construction of the “common good” is a complicated one, of course, because of how it begs the question of who constitutes “the common” as well as “the citizen.” Beginning with the ethical considerations of utilitarianism, a philosophical tradition that seeks to promote action and policy that maximizes the well-being, the idea of “common good” would be measured by value added to as many members of society as possible. Radical (for his time) social reformer Jeremy Bentham (1776/1977) is often described as the founder of modern utilitarianism, and the “fundamental axiom” of his theorizing of the idea was grounded in the notion of "the greatest happiness of the greatest number that is the measure of right and wrong.” (1776/1977: 393) Bentham, famously, is also the creator of the panopticon, a reformist prison that would be cheaper than other penal institutions because its architectural structure demanded only a single guard. But, paradoxically, the panopticon was such an efficient method of surveillance that its ethos, the threat of an omniscient watcher or guard, came to characterize structures of social discipline; Michel Foucault argued that Bentham’s creation was not merely an architectural plan, but contained an entire regime of power that was transferable to any institution that demanded a person be watched, whether the plantation or the clinic or the prison.
The origins of Bentham’s panopticon were conceived while he was aboard a ship with “18 young Negresses (slaves) under the hatches” (Brown 2015: 31). Arguably then, as Simone Brown (2015) puts forth in her book Dark Matters, there is an inextricable link between the modern surveillance structure and servitude conditions of blackness. This link becomes important because within racial capitalism, the notion of the public revolves often around one's capacity to offer a net contribution to society at large: inherent within the idea of the public good is a politic of surveillance and of discipline. The most ideal member of the public, then, could be understood as the white, cisgendered heterosexual (because of their ability to produce a nuclear family), non-disabled worker. Non-white people are only as good and useful as their non-disruption of white supremacy and their offering of their labor to the functioning of capitalism; disabled people, depending on the nature of disability, are understood as a net drain on any social system because of how mental-emotional and physical illnesses and health needs demand of the system to which they ought to be contributing. These are the people racial capitalism renders disposable: they are the cannon fodder without which economic and political systems cannot function, yet they are conditionally within or wholly excluded from the social contract because of the constructed natures of their identities.
Responses to the epidemic have emphasized the universality of susceptibility to the virus. “The virus knows no border or nationality, we are all in this together,” goes the refrain, “and so we bear equal responsibility in protecting our families and our communities.” And yet the reporting on hospitalizations, deaths, and even arrests for mask or social distancing-related infractions (i.e. not wearing masks in states and municipalities where one is required, inappropriately gathering, and so forth) paints an entirely different picture of vulnerability. Writing about the hydroxychloroquine shortages and redirections to COVID 19, Cyrée Jarelle Johnson stated in A Paradoxical History of Black Disease that “we were deemed totally disposable, just a roadblock in the way of getting everyone else our meds. The removal of medication access seemed to signal that the medical industrial complex thought we would be just fine without our life sustaining medication. Yet the lack of care took the idea of black illness for granted, even knowing the environmental, social, and historical context from which it emerged, and elected us the ideal casualties of this disease. We were deemed enough to live without the medication that keeps us alive, yet inherently too sick to survive the latest plague and there’s nothing anyone can do about it: the paradox of black disease.”
Not only aren’t Black people immune to the virus as was previously mused in consideration of the slowness with which the African continent was affected, but Black communities are harmed at rates that are completely disproportionate to their actual numbers in any given part of the population as well as in comparison to whites. In media reports these deaths and high rates of hospitalization have been attributed to “pre-existing” and underlying health conditions in Black communities including obesity, hypertension, and cardiovascular disease - issues often occuring alongside autoimmune conditions such as lupus, as though to imply that Black people are, themselves, personally responsible for their own risk through poor choice. But as with the ways in which lupus incidence and severity is distributed, the structural drivers of inequality — housing discrimination and environmental racism, as well as classed dynamics that increase the likelihood of Black people performing essential worker, frontline, or otherwise lower wage labor roles (which makes them less able to socially distance or stay at home) — make them more vulnerable to viral acquisition rather than bio-logical characteristic.
Sacrifice, incarceration and environmental racism
Given the nature of the American prison system and the systemic discrimination against non-white people, the prevalence of COVID-19 in prisons tracks these same dynamics of disposability. The US incarcerates around 2.3 million people in prisons; according to the NAACP Black men are incarcerated at 5 times the rate of white men and Black women at double the rate of white women. There is an increased rate of chronic illness associated with incarceration that continues even after release and chronic illnesses are the leading cause of death within prisons - attributed to the extremely poor healthcare available. Close quarters, heavy traffic flows into and out of facilities, and the prevalence of communicable diseases, make carceral institutions a hotspot for the virus. The Ohio prison system alone accounts for more than 20% of the state’s total novel coronavirus cases, and it is spreading rapidly — “like wildfire” — through correctional facilities in epicentral New York and other states. But rather than de-carcerating institutions en masse, incarcerated people in New York state are sewing masks for hospitals (when most do not have their own), producing hand sanitizer in light of widespread shortages, and digging mass graves. Despite inconclusive scientific evidence regarding the drug’s efficacy as either prevention or treatment, the Department of Justice’s Bureau of Prisons mass purchase of hydroxychloroquine in late March following Trump's announcement speaks to the risks faced by incarcerated peoples. The lack of substantiation following the purchase is suspicious given the extensive history of unethical drug trials run on incarcerated people who, by the very nature of their detention, are neither able to fully consent or refuse experimental and potentially dangerous trial treatments.
Indigenous peoples around the world, too, are seeing devastating effects of the novel coronavirus on their communities with the infectivity of the virus exploiting long-existing structural weaknesses in the availability of potable water and sewage systems, overcrowded and inadequate housing, and access to basic health resources as a result of centuries of state violence and subsequent neglect. In April, an indigenous health center in Seattle, Washington received body bags and toe tags after it had requested testing equipment. Seattle Indian Health Board chief research officer Abigail Echo-Hawk described this apparent error as a “metaphor” for how Native Americans have been historically treated by the United States government: "The Navajo Nation is in a crisis with cases, and there are tribes and other Indian organizations across the country that are in similar crises and can use medical supplies and help instead of watching people die."
Devastating for disabled and immunocompromised people has been an increase in protests and insistences on “returning to normal”, coming after the announcements of demographic disparities. Stay-at-home and shelter-in-place orders are being interpreted by many people (especially on the right) as an apparent infringement of personal liberties, which understands participation in the capitalist economy as an inalienable American right; indeed white protestors have been documented holding signs reading “sacrifice the weak” and “god gave us an immune system for a reason”. Although there are completely justified reasons for many of the animating economic concerns — with massive layoffs leading to staggering and unprecedented rates of unemployment and looming economic recession, scores of people are worried about paying bills and supporting their families — the protestors’ ire is trained at a government that they portray as restrictive and authoritarian, as opposed to one that is and/our ought to be acting in the interest of the epidemiological common good.
The capitalist and state value of the abled
The matter of sacrifice pervades throughout partisan debates around economic recovery; the maxim for many conservatives has become “flatten the curve, not the economy” as they anticipate and seek to expedite the end of quarantine. In addition to Patrick’s aforementioned argument, others still have suggested that we ought to allow everyone to become infected so as to develop a herd immunity (an unsound strategy as scientists are still uncertain as to whether permanent immunity is possible). In light of suggested attempts for previously exposed or ill people to return to work more quickly, Kathryn Olivarius describes the history of immunoprivilege. She notes its use as a means of white slave owners boosting economic capital because the enslaved black people who developed immunity to yellow fever would be able to continue working and the high labor turnover because of high mortality rates prevented workers from collective bargaining keeping their work and wages insecure. Immunoprivilege underlies discourses proposing immunity passports as a way to recover economic momentum. Such practices violently mark as disposable immunosuppressed, disabled, and chronically ill people who are more likely to experience major health complications (beyond those experienced by apparently healthy people, like the unexpected blood clots and strokes seen in younger patients, as well as kidney damage) or potentially die. Following Olivarius’ argument, it is evident how particularly Black disabled and chronically ill people are both heavily overrepresented in terms of COVID-19 impacts and dehumanised within public discourse committed to upholding white supremacist and capitalist evaluations of life.
The sacrifice of disabled life to economic imperative requires wilful ignorance. The federal government’s response to the pandemic is bringing President Trump’s longtime contestation with scientific convention back to the fore. According to reporting by the New York Times, there is growing sentiment that the policy advice offered by medical experts is antithetical to the maintenance of the economy, placing these scientists at fundamental odds with the goals of the sovereign (i.e. economic growth). This refusal to adhere to life-saving medical advice because it is contra to goals of unfettered economic growth is not unlike President Trump’s move to ban transgender people from serving in the military: it speaks to the identities prioritized by the administration with regards to participation in public life, with poor, queer and transgender, disabled, and non-white people very clearly existing outside of both his and the state’s notion of full and unconditional citizenship. It is necessary to connect the president’s completely unscientific but still enthusiastic endorsement of hydroxychloroquine to potentials for profiteering: he has a “small personal financial interest” in Sanofi, the company that produces the brand-name version of the drug, as does Commerce Secretary Wilbur Ross (never mind the number of other policymaking members of Congress who sold stock holdings after a briefing in which they learnt about the impact the virus would have on international markets). Further, the president’s threat to defund the World Health Organization because of its “alarming lack of independence” from the Chinese government is yet another needless insertion of racism into scientific policy, with a conflation of his insistence that the virus was engineered in a Chinese laboratory with the ongoing America First-style isolationist tariff wars waged with the Chinese government in an attempt to restore domestic manufacturing jobs.
The state’s response to the virus is being waged like a misdirected war. From the militarized metaphorical language of defeating the (not uncommon adjectival use of “Chinese") virus, to the speculative stockpiling of hydroxychloroquine, to the US government literally blocking other countries from receiving supplies (like the ventilators seized while en route to the Bahamas), the government’s maneuvering has been one purely of hubristic arrogance. While the death toll rises, the president demands and arrests attention at the press conferences where he regularly spreads misinformation which is subsequently circulated by reporters.
In her recent text Freedom for Some is Not Freedom for All, disability justice organiser Alice Wong noted that “as a disabled woman of color, my life is unavoidably high-risk. I fight to be seen while knowing I’m one infection, medical crisis, or policy change away from institutionalization or death.” The handling of COVID-19 has intensified and explicitly named who is considered a viable loss in the objective of saving the economy: Black people, brown people, Indigenous people, disabled people, chronically ill, and immunocompromised people, as well as elderly and economically precarious people. As Wong asserts “Fighting for justice and liberation requires the abolition of all systems that oppress and punish us for merely existing.” None of the resultant horrors of the coronavirus pandemic are new: not the resource hoarding, racialized health disparities, or rhetorics of forced sacrifice and disposability. Instead, the brutal necropolitics of racial capitalism were laid so bare that even the risk of viral transmission and illness could not deter millions of Americans from pouring into the streets in protest of police brutality (also increasingly recognized by medical and psychological health organizations as a public health issue). What this moment offers, ironically, is clarity about the structural transformations necessary to more equitably sustain life. As movements for police and prison abolition continue to be spoken about in mainstream politics, we have to connect the abolition of carceral systems and the critical need for universal access to self-determining health care. What this moment and all of the structural breakdowns leading to it all represent is a particular crisis of individualism: a refusal to recognize our social interdependence, as well as an honest self-conception of health and physical ability. It is a crisis that only a disability justice frame that truly maximizes the public good can remedy.
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AM Kanngieser is a geographer holding a Marie Curie Research Fellowship in the Department of Geography, Royal Holloway University of London.
Zoé Samudzi is a writer and PhD candidate in Medical Sociology at the University of California, San Francisco.