Omitting long Covid from pandemic messaging is harmful for public health

Public health messaging about Covid-19 has focused almost exclusively on hospitalizations and deaths. The omission of long Covid, which may affect between 8 million and 23 million Americans, deprives the public of the knowledge necessary to understand the risks of various activities, make informed decisions about risk-taking, and understand what is happening to them if they feel sick for an extended period.

Local and national public health entities continue to characterize infections not resulting in hospitalization as “mild,” and most media have followed their lead. Recent guidance from the Centers for Disease Control and Prevention that removed masking recommendations for the majority of the U.S. is linked primarily to local hospital capacity, and was communicated by CDC Director Rochelle Walensky with risk levels couched in terms of impacts on health care systems and prevalence of severe illness.

In this way, authorities have been shaping a narrative in which the primary risks from Covid are acute illness, death, and impacts on health care systems. Yet evidence is rapidly mounting that post-acute sequelae of SARS-CoV-2 infection (PASC, or long Covid) can cause symptoms — often debilitating symptoms — that persist for months or even years after infection. Studies have found anywhere from 7% to 61% of those infected with Covid later experience long Covid, including those who initially had “mild” cases and were never hospitalized.

While vaccination appears to reduce the risk of long Covid, early findings suggest that as many as 9.5% of patients who received two vaccine doses still experience long-term symptoms. Individuals with long Covid report a wide range of ongoing symptoms, including loss of taste and smell, fatigue, difficulty breathing, and difficulty with memory and concentration. Moreover, acute infection appears to significantly increase the risks of cardiovascular problems such as stroke and heart failure and is associated with reduction in gray matter thickness and cognitive performance. The U.S. government is only haltingly beginning to study long Covid.

While encouraging individuals to take personal responsibility for pandemic-related risks and to adjust their behaviors in accordance with their personal risk tolerances, public health officials have simultaneously deprived them of the knowledge necessary to do so. The ongoing failure to explicitly acknowledge and consider the implications of long Covid in public health narratives harms both patients and populations in at least four overlapping ways.

First, in downplaying or excluding the likelihood of long-term impacts from Covid infection from their messaging, public health officials contribute to multiple forms of “epistemic injustice.” Philosopher Miranda Fricker describes the notion of epistemic injustice as an injustice done to someone in their capacity as a knower. Individuals face the most basic form of epistemic injustice, testimonial injustice, when what they have to say is discredited because of the prejudices of the listener — as, for example, when women’s or Black patients’ self-reports about their symptoms are more likely to be discounted or dismissed by clinicians than their white male counterparts.

Public health officials, in omitting long Covid from their narratives, have failed to help both the public and health care providers to understand the risks of long Covid and how it might present in people showing up at their doctor’s office. The result is that many medical professionals continue to dismiss patient complaints about residual symptoms. Chronically ill and disabled patients already face significant testimonial injustice in the clinic due to widespread and normalized discrimination against them. Ongoing lack of fluency by providers — due in part to the lack of clear messaging about long Covid — will only contribute to more of the same, with patients experiencing these symptoms dismissed or minimized by health care providers. And this, in turn, can delay or prevent access to appropriate care.

Secondly, excluding long Covid from public health narratives is depriving individuals who are suffering from long-term symptoms of an understanding of what is happening to them and the shared vocabulary necessary to effectively communicate about those experiences with those who may be in a position to help. Fricker called this “hermeneutical injustice,” which is an injustice that happens when there is no widespread social uptake of the concepts necessary to understand and communicate one’s experiences. Fricker pointed to women’s inability to understand and communicate about sexual harassment in the workplace before the concept of “sexual harassment” became widespread as an example of this kind of injustice, but it is also experienced in clinical encounters in which, for example, physicians may assign greater credibility to the outcomes of objective tests than they do to patients’ self-reports of pain.

The ongoing exclusion of long Covid from public health narratives contributes to this hermeneutical injustice by making it harder for patients to understand their experiences, and more difficult for them to communicate about those experiences with their health care providers. Without this shared understanding, clinicians are more likely to dismiss patients’ reports of symptoms in the absence of a current positive Covid-19 test, exacerbating the already pervasive disregard for the value of what disabled and chronically ill people say about their symptoms.

Importantly, the availability of shared concepts and vocabularies for understanding and communicating about our experiences is strongly determined by those in positions of social power, who have outsized influence over how we collectively define social problems. In the context of the pandemic, the ways we talk about the risks of Covid are largely determined by public health officials and what and how they choose to communicate with the public. When these officials use their power to deprive those in marginalized groups, such as the chronically ill, of the tools and knowledge they need to have their experiences taken seriously, this constitutes a third kind of harm.

Choosing to omit the long-term disabling potential of acute infection from public health narratives perpetuates the kinds of injustices discussed earlier by preventing important concepts and vocabularies from entering the mainstream social consciousness. This, in turn, further contributes to the ongoing medical marginalization of those with disabilities or chronic poor health, who will continue to struggle to have their symptoms taken seriously by their health care providers. As more people continue to get infected, and re-infected, the proportion of the population relegated to this kind of marginalization will only continue to grow. And because Covid-19 disproportionately affects members of minoritized groups, these impacts are likely to drive further racial disparities in health outcomes.

Fourth, the omission of long Covid from public health narratives is also likely to contribute to the ability of governments to sidestep responsibility for the long-term, population-level impacts of long Covid, thereby letting those incomplete narratives play an exonerative role. This illustrates how existing political and economic structures provide incentives to those in positions of power to privilege narratives that are prejudicial: In refusing to acknowledge the prevalence of long Covid, officials undermine future claims against the state to care and resources, adding material harms to epistemic harms and turning medical marginalization into social marginalization.

Perhaps public health officials are neglecting long Covid in their decision-making and public communications due to the significant uncertainty surrounding how prevalent and debilitating it is. The tendency to downplay uncertainty may be motivated by a desire to maintain patient confidence in the expertise of their health care providers and to prevent fear among the public. But uncertainty is an inherent part of both medical science and medical practice, and pretending it is not can engender greater distrust among both patients for their providers, and the public for public health decision-makers. The uncertainty surrounding long Covid must be communicated to the public so individuals can make more fully informed decisions about how they choose to act and interact in the context of an ongoing pandemic.

The omission of long Covid from public health narratives has reinforced epistemic injustices long embedded in mainstream medical culture, compounding harms to those already suffering from intersecting forms of vulnerability and exclusion. Over time and without course correction, this harm will only increase as the Global North moves to rollback preventive measures, as pressure mounts on the Global South to do the same, as more people become infected, and the population-level prevalence of long Covid inevitably rises.

Danielle M. Wenner is an associate professor of philosophy at Carnegie Mellon University and associate director of CMU’s Center for Ethics & Policy. Gabriela Arguedas Ramírez is an associate professor of philosophy and women’s studies at the Universidad de Costa Rica.