The government giving up on COVID protections means throwing immunocompromised people to the wolves

The uncontrolled spread of COVID-19 means there are few treatments left for immunocompromised people like me

Published May 14, 2023 1:59PM (EDT)

A woman wearing a mask walks in the crowd (Arne Dedert/picture alliance via Getty Images)
A woman wearing a mask walks in the crowd (Arne Dedert/picture alliance via Getty Images)

I walk my dog on a path that makes a wide loop around the YMCA near my house. From the periphery of the parking lot, I can see people rushing from their cars to the building to spend an hour on the treadmill or in the pool. I'm immunocompromised from treatment for multiple sclerosis, an incurable, progressive disease of the central nervous system.  

I've resorted to walking around the building for the past three years because I'm at risk for getting very sick or dying from COVID-19. It's safer for me to get my exercise outside, separated from the maskless people exercising inside.

For the people inside the gym, squeezing a workout into a busy day is a symbol of morality in a society that equates good health with good morals. People who are well and non-disabled are conditioned to believe that eating well, not smoking, and getting 150 minutes of moderate aerobic activity per week not only ensures that they'll have good health, but that they deserve it. Sick and disabled people like me know that this is not true, however. This belief is reinforced by the medical models of health and disability and for-profit healthcare in the US.

The doctrine of the medical model is so ingrained in our culture that it shapes the way Americans understand the concept of health. The medical model focuses on preventing and treating individual conditions in individual bodies, rather than correcting systemic factors that affect people at the community level. It's a reductive approach that ignores the social determinants and forms of discrimination that shape health outcomes. It's concerned with correcting deviations from a normal defined by the absence of disease and disability.

Individualism — even when it's billed as morality — cannot protect people from an airborne, ever-mutating virus.

This normal is not neutral. According to the medical model and the moral model it evolved from, people who are sick or disabled are abnormal and "bad", lacking both good health and, presumably, good morals. 

The medical model is the blueprint for a US healthcare system that profits from the fear of this abnormal. Our for-profit system offers band-aid solutions for individual body parts rather than care for the complex, interdependent relationship between the sick and disabled body and mind. American healthcare is the least effective for those with the greatest needs, and that's not just an unfortunate side effect of the system– it is the system.

For-profit healthcare profits by inflating prices and cutting corners on services, but sick and disabled people have many needs and often have few financial means. Those of us who can't pay high premiums and purchase endless, temporary fixes are relegated to the lowest standard of care. Confusing formulas and inhumane restrictions determine whether we qualify for this care. Because there is no single treatment that can make us "normal," this care is rationed (and our lives are constrained) through a set of policies masquerading as a safety net. 

Sick and disabled Americans are chronically  unemployed, underemployed, and paid sub-minimum wage as a matter of policy. When we can no longer work, we struggle to survive in a Social Security Disability Income (SSDI) system that pays less to low-wage workers. Those of us who have no income and few resources are only eligible to receive a maximum payout of $794 per month — well below the poverty line — through a Supplemental Security Income (SSI) system that hasn't been updated since 1972. We are more than twice as likely to live in long-term poverty than our non-disabled counterparts, and some of us die while waiting to receive any assistance at all.

Per SSI regulations, sick and disabled people are required to survive under these poverty-level income and asset limits in order to receive medical assistance (Medicaid) and community support services. Medicaid pays providers less than Medicare or private insurance, however, leaving Medicaid patients with fewer providers and impaired access to care. And SSI often denies and delays the services that sick and disabled people need to access our communities. As of 2021, there were 656,000 disabled Americans waiting an average of nearly four years for home and community based services.

Meanwhile, the US has abysmally low policy standards for accessible housing, transportation and public infrastructure. Sick and disabled Americans are expected to utilize public spaces that are simply not designed to meet our needs. Those of us who are deemed to be abnormal in these inaccessible spaces are pathologized, criminalized, or locked away in institutions. Of course, outsourcing the care of sick and disabled people to for-profit institutions keeps us separated from our families and friends, who are more profitable to their workplaces when they aren't distracted by caring for us. The profits extracted from the care of segregated sick and disabled people and the undistracted workers they are segregated from are fuel that keeps US capitalism running. 

The Biden administration has repeatedly claimed that it's committed to protecting vulnerable people, but in fact it has increasingly put us at risk.

The policies that condemn sick and disabled people to forced poverty, sub-par healthcare, and inaccessible communities are designed to save money. US capitalism will not provide comfort to people whose labor can't be exploited in inaccessible work environments. An additional, cruel effect of these policies is the erasure of sick and disabled people from the public sphere — and from the minds of people who are well and non-disabled. 

Our absence from the public sphere in turn normalizes the continued abuses of sick and disabled people. We are ignored by public health policy and denied critical care, but our suffering is unseen, confined to private homes and medical-industrial complex "care" facilities. Keeping our unnecessary deaths out of sight and out of mind is an American tradition. In fact, it is the foundation of eugenics in the United States. 

But people who are well and non-disabled are told that we are weak, lazy, dirty, contagious, or unruly. They are told that we're a burden to people with good health and good morals. Sick and disabled people are not just physically distanced from well and non-disabled people, we are psychologically distanced. Our absence from the public sphere is so essential to our economy that it's become enshrined in the norms of well and non-disabled society. 

This is especially true during a pandemic that is highly inconvenient to the neoliberal capitalist economy. The Biden administration has employed the medical model's good health, good morals paradigm to rationalize abandoning vulnerable Americans to disability and death from COVID-19. Biden's policies are designed to get everyone back to work, but they also appeal to well and non-disabled people's fear of a medicalized "abnormal". According to Biden and the CDC, people who have bad health outcomes from COVID-19 have made bad individual choices- they are unvaccinated , politically undesirable, or have "comorbidities." 

The problem with this narrative is that individual good fortune is not necessarily the result of good behavior. Individualism — even when it's billed as morality — cannot protect people from an airborne, ever-mutating virus. This can only be done through public health policy that protects the collective, with the needs of its most vulnerable as its foundation.

The Biden administration has repeatedly claimed that it's committed to protecting vulnerable people, but in fact it has increasingly put us at risk. I've received five COVID-19 vaccinations, but my multiple sclerosis treatment prevents me from making the antibodies I would need to be protected by them. There are no preventative COVID-19 treatments for millions of immunocompromised people like me because the mutations caused by unmitigated transmission of the virus have rendered monoclonal antibodies ineffective. Immunocompromised Americans have been left completely unprotected from current variants. In lieu of pushing for continued public funding to update preventative treatments, Biden and the CDC recommend that vulnerable people and our loved ones maintain physical distance from others, avoid indoor crowded spaces, and "develop a care plan."

Immunocompromised Americans have been left completely unprotected from current variants.

Biden and the CDC claim that antivirals are all that's needed to protect high risk people from severe disease or death. Yet these treatments are only useful in a body that can tolerate them. Antivirals come with a sizable list of contraindications and drug interactions, including many medications that high risk people must take to survive. Even when a patient's body can tolerate antiviral treatments, they can be difficult to get. Social determinants of healthcare discrimination like racism and poverty affect equitable access to antivirals. High false-negative rates on COVID tests and geographic distance from distribution sites prevent timely access to antivirals like Paxlovid which need to be taken within five days of symptom onset. While antivirals like Paxlovid reduce death rates, they do not prevent severe disease or death. The only way to prevent severe disease or death in vulnerable people is to prevent us from contracting COVID-19 in the first place.

By refusing to mandate masking or improve ventilation standards, Biden and the CDC have also put the onus of non-pharmaceutical protections solely on vulnerable individuals. But these interventions inherently rely on public cooperation to be most effective. As a result, the public sphere has evolved into a wild west of infectious freedom for those of us at risk for severe illness or death. Worse, the Biden administration ended the COVID public health emergency on May 11th, making life-saving COVID-19 interventions less accessible and the public sphere riskier for vulnerable Americans. 

Rather than enacting public health policy that protects everyone, the Biden administration is focused on making the collective abandonment of vulnerable people palatable to the well and non-disabled public. It has manufactured consent for a "normal" built on toxic American nostalgia. The catchy tagline "return to normal" conjures nostalgia for a time when sick and disabled people were so segregated from people who are well and non-disabled that the abuses of American eugenics were hidden from those who could be an illness or accident away from becoming victims of them. It's a motto designed to convince people that there's nothing immoral about sentencing their vulnerable neighbors to house arrest so that the rest of the world can "move on." It's reassurance that merely putting on a good performance on behalf of the vulnerable–a tweet, a yard sign, a clap– is enough. "Return to normal" is permission to indulge in the excesses of American individualism without taking responsibility for the devastation they cause other people.

With sick and disabled people physically and psychologically distanced from them, people who are well and non-disabled have detached themselves from the immorality of their own behavior. "Return to normal" frames indifference to suffering as a morally neutral position and public health as a matter of personal preference. But there is no neutrality in the individual actions that comprise public health; they either cause harm or prevent it. Segregating the "unfit" from the "fit" is not a matter of debate. It is an abomination and a core tenet of eugenics.

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More than three years into the pandemic, it's clear that returning to normal cultivates more contagious and immune-evasive variants. Yet in his State of the Union address, Biden assured the public that "COVID no longer controls our lives." This ignores the millions of high risk Americans who have been forced to the periphery of society to survive, the 11% of US adults who currently have Long Covid, and the more than  40,000 Americans who have died from COVID-19 in 2023 so far.  COVID-19 is the third leading cause of death in the United States and those deaths fall disproportionately on the vulnerable. But Biden's language shifts blame onto the victims. It implies that people who lost their lives to failed public health policy were simply "letting" COVID control their lives.

The Biden administration has also shifted the blame for COVID's many casualties onto (formerly) well and non-disabled people who didn't understand their risks and are suffering for it. COVID-19 can cause horrific pulmonary, neurological, and cardiac dysfunction , immune dysregulation , widespread organ damage , and death in any body– vaccinated or not. The number of people with devastating, long-term damage is growing every day.  

But "return to normal" frames death and disability from COVID-19 as the far away problems of a few bad individuals. It conflates good health with good morals to rationalize expending vulnerable lives for the economy. Despite the Biden administration's attempts to normalize it, "return to normal" is toxic nostalgia for the US's ugly history of segregation and eugenics. 

History will similarly condemn Americans who currently practice performative interconnectedness while abandoning public health and their sick and disabled neighbors along with it. Real interconnectedness is examining how our actions and versions of normalcy affect people far away. It is taking individual responsibility rather than indulging in the fleeting gratifications of individualism. It is holding our leaders and ourselves to account and making sure that none of us are excluded or considered expendable. That should be our new normal.

By Maggie Mills

Maggie Mills is an assistant professor of art at Cedar Crest College and a member of Hook&Loop, an accessible artist collective in Philadelphia. Her writing has been published in Common Dreams, Monthly Review, and LA Progressive. She is currently working on a collaborative digital archive of the histories of Disabled Philadelphians. She is immunocompromised from treatment for multiple sclerosis.

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Commentary Covid-19 Immunocompromised Immunology Monoclonal Antibodies Multiple Sclerosis Public Health