PPublic health news on 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 different activities, make informed decisions about risk-taking and understand what to do with happens to them when they feel sick for a long time.
Local and national health authorities continue to characterize non-hospitalization infections as “mild” and most of the media has followed suit. The latest guidance from the Centers for Disease Control and Prevention, which lifted masking recommendations for most of the U.S., is largely related to, and was, the capacity of local hospitals shared by CDC Director Rochelle Walensky with risk levels formulated in terms of impact on health systems and prevalence of major diseases.
In this way, the authorities have formed a narrative in which the main risks of Covid are acute illnesses, fatalities and health systems impact. However, evidence is rapidly accumulating that post-acute episodes of SARS-CoV-2 infection (PASC or long Covid) can cause symptoms – often debilitating symptoms – that last months or even years after infection. Studies have found that between 7% and 61% of people infected with Covid go on to have Covid for a long time, including those who initially had ‘mild’ cases and were never hospitalized.
While vaccination appears to reduce the risk of a long Covid, early results suggest that up to 9.5% of patients who have received two doses of the vaccine still have long-term symptoms. Individuals with long Covid report a variety of persistent symptoms, including loss of taste and smell, fatigue, difficulty breathing, and difficulties in memory and concentration. In addition, acute infection appears to significantly increase the risk of cardiovascular problems such as stroke and heart failure and is associated with a reduction in gray matter thickness and cognitive performance. The US government is only hesitantly beginning to study Covid for a long time.
While individuals are being encouraged to take personal responsibility for pandemic-related risks and adapt their behavior to their personal risk tolerance, public health officials have been depriving them of the knowledge to do so. The continued failure to explicitly acknowledge and address the impact of Long Covid in public health narratives harms both patients and the population in at least four overlapping ways.
First, by downplaying or excluding from their messages the likelihood of long-term effects of Covid infection, public health officials are contributing to multiple forms of “epistemic injustice.” The philosopher Miranda Fricker describes the notion of epistemic injustice as an injustice inflicted on someone in his capacity as a knower. Individuals face the most basic form of epistemic injustice, testimony injustice, when what they have to say is discredited because of the listener’s biases—such as when women’s or black patients’ self-reports of their symptoms are more likely to be discounted by clinicians or be dismissed than their white male counterparts.
Public health officials have failed to help both the public and healthcare providers understand the risks of long Covid and how it might present itself to people showing up in their doctor’s office by omitting long Covid from their narratives. The result is that many medical professionals continue to dismiss patient complaints about residual symptoms. Chronically ill and disabled patients are already confronted with considerable inequity in the clinic due to widespread and normalized discrimination. The continued lack of fluency by providers – partly due to a lack of clear messages about long Covid – will only serve to ensure patients experiencing these symptoms are dismissed or minimized by healthcare providers. And this, in turn, can delay or prevent access to appropriate care.
Second, the exclusion of Long Covid from the public health narratives deprives individuals suffering from long-term symptoms of an understanding of what is happening to them and of the shared vocabulary needed to effectively communicate about those experiences with those who are may be able to help . Fricker called this “hermeneutic injustice,” an injustice that happens when there isn’t widespread social acceptance of the concepts necessary to understand and communicate one’s experiences. Fricker pointed to the inability of women to understand and communicate about sexual harassment in the workplace before the concept of “sexual harassment” became widespread as an example of this type of injustice, but it is also experienced in clinical encounters where For example, physicians may give more credence to the results of objective tests than patients’ self-reports of pain.
The continued exclusion of long-Covid from public health narratives contributes to this hermeneutic injustice by making it more difficult for patients to understand their experiences and more difficult for them to communicate those experiences with their healthcare providers. Without this shared understanding, clinicians are more likely to dismiss patients’ reports of symptoms in the absence of a recent positive Covid-19 test, reflecting the already widespread disregard for the value of what disabled and chronically ill people say about their symptoms. even tightened.
Importantly, the availability of common concepts and vocabularies for understanding and communicating our experiences is strongly determined by those in positions of social power, which have an outsized impact on how we collectively define social problems. In the context of the pandemic, the way we talk about the risks of Covid is largely determined by health authorities and what and how they communicate with the public. When these officials use their power to deny marginalized groups like the chronically ill the tools and knowledge they need to have their experiences taken seriously, it constitutes a third type of harm.
The decision to omit the long-term disabling potential of acute infection from public health narratives perpetuates the kind of injustices previously discussed by preventing important concepts and vocabulary from entering mainstream societal consciousness. This, in turn, further contributes to the ongoing medical marginalization of people with disabilities or chronically ill health, who will continue to struggle to have their symptoms taken seriously by their healthcare providers. As more and more people become infected and re-infected, the proportion of the population relegated to this type of marginalization will only continue to grow. And since Covid-19 is disproportionately affecting members of minority 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 help governments be able to evade responsibility for Long Covid’s long-term population-level impacts, giving these incomplete narratives an exonerating role. This illustrates how existing political and economic structures incentivize those in power to favor adverse narratives: by refusing to acknowledge the prevalence of long Covid, officials undermine future claims against the state for care and resources, and add material damage to epistemology and transforming medical marginalization into social marginalization.
Perhaps public health officials are neglecting Covid in their decision-making and public communications due to the significant uncertainty surrounding how widespread and debilitating it is. The tendency to downplay uncertainty may be motivated by a desire to maintain patients’ trust in the expertise of their healthcare providers and to avoid fear in public. But uncertainty is an inherent part of both medical science and medical practice, and pretending it isn’t the case can inspire greater distrust, both by patients toward their providers and by the public toward public health decision-makers . The uncertainty surrounding Long Covid needs to be communicated to the public so that individuals can make more informed decisions about how to act and interact in the context of an ongoing pandemic.
The omission of the long Covid from public health narratives has reinforced epistemic injustices long ingrained in mainstream medical culture and compounded the harm to those already suffering from intersecting forms of vulnerability and exclusion. Over time and without a course correction, this damage will only increase as the Global North moves to scale back preventative 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 inevitable will rise.
Danielle M. Wenner is Associate Professor of Philosophy at Carnegie Mellon University and Associate Director of CMU’s Center for Ethics & Policy. Gabriela Arguedas Ramírez is Associate Professor of Philosophy and Women’s Studies at the Universidad de Costa Rica.