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Creating Brain-Forward Policies Amid a ‘Mass Deterioration Event’

By Emily R.D. Murphy

COVID-19 will be with us — in our society and in our brains — for the foreseeable future. Especially as death and severe illness rates have dropped since the introduction of vaccines and therapeutics, widespread and potentially lasting brain effects of COVID have become a significant source of discussion, fear, and even pernicious rumors about the privileged deliberately seeking competitive economic advantages by avoiding COVID (by continuing to work from home and use other peoples’ labor to avoid exposures) and its consequent brain damage.

This symposium contribution focuses specifically on COVID’s lasting effects in our brains, about which much is still unknown. It is critical to focus on this — notwithstanding the uncertainty about what happens, to how many, and for how long — for two reasons. First, brain problems (and mental health) are largely invisible and thus overlooked and deprioritized. And second, our current disability laws and policies that might be thought to deal with the problem are not up to the looming task. Instead, we should affirmatively consider what brain-forward policies and governance could look like, building on lessons from past pandemics and towards a future of more universal support and structural accommodation of diminishment as well as disability.

What does COVID infection do to our brains?

There is a lot we still do not know about COVID and the brain, but we know enough to raise concern. In some cases, acute and long COVID presents with clear neurological and psychiatric manifestations such as hyposmia/anosmia, consciousness disorders, delirium, agitation, encephalopathy, encephalitis, acute ischemic stroke, hypoxic/ischemic brain injury, seizures, vertigo, numbness/paresthesia, anxiety, depression, mood disorders, fatigue, headaches, sleep disorders, and new-onset psychosis.

Post-COVID “brain fog” is used to describe disturbing cognitive symptoms of problems in memory, processing speed, attention, language fluency, and executive functions. These symptoms can range in severity from annoying to debilitating. Executive function and memory deficits mess up everyday living, creating problems “finishing daily chores and task lists, meeting schedules, controlling emotions, analyzing data, and processing information.” Evidence from more than a million patient records indicates that post-COVID infection risk of cognitive deficits, psychotic disorder, dementia, and epilepsy or seizures remains elevated for years, as compared to people with a different respiratory infection.

In other cases, there may be “subclinical” effects of brain cell death, inflammation, and other biological changes — with unknown clinical significance. Documented changes in patients with brain-based “long COVID” symptoms have included small studies reporting regional areas of hypometabolism (which has been linked to the development of neurodegenerative disorders and psychiatric conditions such as schizophrenia), including similar patterns in kids. Other small-study findings have included delayed cognitive symptom onset and spinal fluid abnormalities.

Large studies are generally not encouraging. In a large population where participants did not specifically report long-COVID symptoms, a COVID infection increased the risk of mental health problems compared to non-COVID-infected and influenza-infected groups. One study that generated a large amount of press compared the brains of several hundred adults to themselves before and after COVID (their “before” scans were part of a large databank) and found brain structure alterations as well as cognitive impairments even after mild, non-hospitalized cases. But a more recent preprint comparing 223 matched (pre-pandemic) uninfected control subjects with 223 infected and unvaccinated persons recovered from “mild to moderate” COVID infection found no differences in neuropsychological test scores and, using advanced diffusion MRI, only subtle changes in white matter but no brain cell atrophy or other changes across 11 different biological markers.

True incidence rates for brain-based effects of long COVID are difficult to pin down because the condition is so complex and not well-defined. Estimates in the literature range from 5 to 50%, with vaccination reducing risk but by an uncertain degree. The U.S. Centers for Disease Control and Prevention reports long COVID incidence of 20-25%, with higher rates (especially of brain-based conditions) in older people. Some researchers predict that the pandemic will “substantially contribute to the world dementia burden.” Further complicating these estimates is the likelihood that people with persistent but mild cognitive symptoms may not seek or obtain treatment, or even attribute changes to mild or asymptomatic prior infection.

There are currently several major hypotheses about the sources of brain changes after COVID: direct, persistent viral infection (including, possibly, direct infection via nanotubes tunneling from respiratory tract cells into neurons and/or supporting brain cells), immune-related neuroinflammation and autoimmunity sequelae attacking brain cells, distal inflammation of other organs that have indirect effects on brain cells, and upstream degeneration after loss of sensory input (anosmia) from COVID’s impact on olfactory cells.

What is not in doubt, despite the unclear clinical and biomechanistic picture, is that COVID-19 affects our brains. Whether these effects are always meaningful, permanent, or unique to COVID is still undetermined. For example, it is possible that subtle, temporary brain changes happen after other types of infection, without noticeable or lasting effects on cognition or behavior — and we have just never looked for them in a concerted way before, perhaps because fewer people were simultaneously affected. (Some studies comparing COVID survivors to survivors of other respiratory illnesses are not, as of yet, encouraging on that front.)

Does all of this uncertainty matter?

Evidence of brain changes after COVID infection is not, by itself, cause for intervening action — especially because that evidence is incomplete. It is cause for further investigation (including comparative investigations encompassing other, previously neglected post-viral illnesses).

It is also cause for seriously and deliberately considering the impact on society of widespread disease effects that fall outside the realm of legally-recognized disability. For example, currently, Social Security Disability benefits are available only to persons whose inability to work due to a medical condition is expected to last at least 12 months. Some troublesome brain effects of COVID (such as mood and anxiety disorders) may resolve after months, while others persist for years. Additionally worth reconsidering is the requirement for individuals to supply objective medical documentation showing an inability to perform work, a task that itself requires good executive functioning to complete, and is complicated by the frequent absence of abnormal medical testing in long COVID sufferers. Moreover, individually distressing conditions — such as subtle cognitive symptoms — may not “substantially limit” a major life activity, and thus, at present, are outside the realm of protections under the Americans with Disabilities Act.

Notwithstanding the claims that COVID may be a “mass disabling event,” disability benefit claims have not (yet) increased. But accommodations at work can be difficult to obtain; and even identifying the appropriate measures can be a challenge — the Labor Department currently is crowdsourcing suggestions. And individuals suffering decreases in the quality of their life may nevertheless be reluctant to self-identify as disabled. Cognitive impairments are a particular source of embarrassment and shame. Putting together survey results, however, analysts estimate that multiple millions of Americans are suffering from COVID-induced brain-based problems, such as impaired memory and concentration. These problems are invisible, but impactful.

What would brain-forward health policy look like?

When it comes to our brains and public (health) policy, we need two things as the COVID-19 pandemic drags on, apparently interminably.

First, we need to keep collecting and analyzing better data to understand the scope of COVID’s impact on our brains and behavior, including subtle but consequential functional impacts that may only show up in population-level data.

And second, we need tools to conceptualize and assess the societal impact of widespread, enduring, and subtle changes to health and particularly brain function. That is, if many people are indeed affected by COVID in ways that are meaningful and impactful but perhaps not “substantial” (as defined in the ADA, limiting a “major life activity”), or if they do not self-identify as disabled in ways that are necessary to begin seeking individualized accommodations and benefits, that suggests we need entirely new and different political, economic, and social structures that are built with the potential for (or inevitability of) mass diminishment or disability in mind.

Governments could and should adopt an approach towards investing in the collective cognitive capital of its populace: in the first instance, thinking about how it can demand less from its citizens by minimizing administrative burdens (especially those that fall on persons with disabilities and related to health care seeking) that require a lot of cognitive functions, while also actively promoting healthy brain policies and research into remediation.

Given limited public health resources, it is fair to ask whether we should prioritize addressing widespread but sub-clinical diminishment of brain and cognitive function, when there are serious issues of other post-COVID health impacts (such as a massive increase in risk of cardiopulmonary events), an ongoing mental health crisis, and structural inequities in access to care and social determinants of health.

If this “mass deterioration event” is prioritized, however, we can finally address the deficiencies of our current laws and policies that have been highlighted not just by COVID-19, but also by past pandemics. A conceptualization of persons with disabilities as a “discrete and insular” minority requiring tailored, individualized accommodations will be inadequate to address the (invisible and easily overlooked) mass cognitive diminishment and consequent structural changes required. It is time to think of our collective brain health as a resource to be prioritized, and of individual brain health and capability as a temporary and potentially vulnerable state. The coming years of the pandemic may force this upon us whether or not we adopt these conceptualizations now.

Emily Murphy, PhD (behavioral neuroscience), JD, is an Associate Professor of Law at the University of California Hastings College of the Law. Her work is at the intersection of brain, behavior, law, and policy.

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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