More than two years into the coronavirus crisis, many people who fell ill with COVID-19 are suffering what is known as long COVID and are yet to return to their former lives. Taking care of the pandemic’s slow-to-heal survivors should prompt a rethinking of the very notions of what disability is—what it looks like and what can trigger it.
New data from the Centers for Disease Control and Prevention (CDC) indicate that one in five Americans with COVID-19 infections develop longer-term symptoms, lasting more than three months. More than 86 million COVID cases have been recorded in the United States, according to Johns Hopkins University. This means that tens of millions of Americans have experienced or are experiencing long COVID, whose symptoms include cognitive impairment, severe fatigue, and post-exertional symptoms exacerbation.
These conditions can be dramatically worsened by over-exertion. Yet COVID long-haulers (as these patients are commonly called) are often forced to return to work and fight through their symptoms in order to provide for themselves and their families.
Long COVID is a complex, chronic illness that requires a robust, personalized approach for symptom management. There is currently no cure. However, based on the scientific literature from previous post-viral conditions, resting and pacing can be the most effective management techniques. Not allowing time for a full recovery from COVID-19 could increase the likelihood of long COVID worsening and turning into a longer-term disability.
Not allowing time for a full recovery from COVID-19 could increase the likelihood of long COVID worsening and turning into a longer-term disability.
It’s vital that policymakers learn lessons from COVID long haulers in order to promote wide-ranging social resilience against current and future infections. Long haulers represent the largest influx of new members to the disability community in a generation.
The continuing crisis around long COVID should inspire policymakers to embrace a more flexible frame of reference around what it means to be disabled, and to design more generous short-term disability policies, including a federal short-term disability benefit. Allowing long haulers to rest in the short term might help them avoid years or decades of significant, often disabling long-term health consequences.
Such strategies could ensure those with long term illness are given time to recover, or to rebuild their lives in light of newfound barriers. And they could contribute to a more equitable and accessible society for those with a range of disabilities.
A New Understanding of Disability
As medical understanding catches up with the needs of COVID long haulers, some of the best research to date has been conducted by the patients themselves, and can offer entry points to thinking about how to design responsive policy.
The Patient Led Research Collaborative (PLRC) for COVID-19 surveyed 3,782 COVID long haulers, providing one of the most useful snapshots to date of the devastation that long COVID can cause in the lives of those impacted. Published summer 2021, the study showed that some seven months after their initial infection, more than two-thirds of the respondents reported that they needed to work reduced hours or could no longer work at all.
Long COVID is likely the same phenomenon as several other infection-associated chronic illnesses, which have been described in medical literature for decades. Patients often experience postural orthostatic tachycardia syndrome (POTS), in which the heart rate skyrockets even while at rest, and can cause dizziness and fainting. Long haulers also frequently report mast cell activation syndrome (MCAS), in which immune cells responsible for triggering allergic reactions over-respond and can cause a range of symptoms, from hives to diarrhea.
According to a growing number of studies, one of the most common features of long COVID is post-exertional malaise, in which physical and cognitive symptoms worsen after even mild exertion.
In this way, long COVID cases often meet the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, which can develop in the wake of infections from a large number of pathogens. The Epstein-Barr virus has long been an oft-cited trigger for ME/CFS. Now the SARS-CoV-2 virus that causes COVID-19 is the most recent glaring and prevalent example.
Though there is no standard drug for ME/CFS approved by the Food and Drug Administration, many of the same treatment strategies that work for ME/CFS will also directly help long COVID patients. These symptom-based interventions—to stabilize sleep or manage pain, for instance—are not cures, but they can help patients take the edge off their symptoms and regain some quality of life. From the earliest days of the pandemic, the ME/CFS patient community and clinical experts stepped in to share decades of hard-won wisdom with a new generation of long haulers experiencing chronic illness for the first time.
Foremost among these recommendations is an imperative to rest. Patients have limited energy and are hamstrung in their ability to bounce back after physical or mental exertion. Exertion or exercise can inflame a body already experiencing profound levels of post-viral inflammation, so long haulers must prioritize the activities that matter most in their lives, and pace themselves while performing them. Failure to pace risks a devastating blowback, crashing the patient for days afterwards.
COVID long haulers are thus frequently faced with having to decide between resting in order to recover and scrambling to find ways to support themselves and their families.
What Disability Benefits Can Long Haulers Access?
Currently, the only federal disability benefits available through the Social Security Administration are through its long-term disability programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The programs’ eligibility requirements are notoriously stringent, and are the toughest of any Organization for Economic Cooperation and Development (OECD) member nation. Applicants must prove through extensive medical evidence that their disabling condition will last at least twelve months or result in death, and that they are unable to do any job that exists in significant numbers in the national economy at a level where they could earn $1,350 per month.
Applicants lucky enough to be approved still must wait another five months to start receiving benefits (in the case of SSDI) and twenty-four months before their Medicare coverage kicks in; are only allowed to keep a paltry amount of money in savings (in the case of SSI); and often have to endure years-long appeals processes before being approved for benefits—delays that were unconscionable even before the pandemic, due to years of underfunding the Social Security Administration’s operating budget. According to a federal watchdog, more than 100,000 people with disabilities died while waiting on appeals for disability benefits between 2008–19 due to lengthy backlogs, and another 48,000 were forced to file for bankruptcy.
A large swath of disabled COVID long haulers are yet to make their way through the SSDI/SSI gauntlet. The most severely affected are caught in a no-man’s land—too sick from long COVID to support themselves, and yet not sick long enough to qualify for federal support.
Currently, there is no federal short-term disability benefit. There is also no federal paid sick days law and no federal paid family and medical leave law for serious illnesses. While long COVID patients wait to find out if they’re eligible for a federal benefit they may never receive, they risk seeing their careers destroyed and falling into economic ruin.
While long COVID patients wait to find out if they’re eligible for a federal benefit they may never receive, they risk seeing their careers destroyed and falling into economic ruin.
Many companies offer short-term disability benefits to their employees, but such benefits don’t exist for many wage earners, gig workers, and freelancers. According to one analysis, just 40 percent of workers have access to short-term disability insurance.
And even when they do have access, many long haulers report that they are being denied coverage, in part due to the emerging nature of the science around their condition. There isn’t yet a widely accepted blood test which proves or disproves an individual’s long COVID status.
The Need to Create a Federal Short-Term Disability Benefit
The discussion at the federal level of a short-term disability benefit to help COVID long haulers is still only nascent. The PLRC’s patient researchers have presented their findings to leaders at the World Health Organization, National Institutes of Health, and the CDC. Their expertise has been sought out by the House Energy and Commerce Committee last spring, and they provided recommendations to the White House COVID-19 Health Equity Task Force last summer. They called on Congress to include federal short-term disability benefits for long COVID in future pandemic relief bills. So far, however, additional support and benefits haven’t materialized.
At a minimum, advocates argue, the long COVID scourge should prompt lawmakers to shorten Social Security disability application processing times—which will require, for the first time in a decade, giving the Social Security Administration the administrative resources it needs; updating SSI benefits to at least 100 percent of the federal poverty level; reforming archaic policies such as asset limits so low they prevent beneficiaries from having even modest emergency savings; and removing waiting periods between approval and benefit payment and access to health insurance.
Early in the pandemic, Congress enacted laws requiring employers to provide paid leave to individuals infected with COVID-19, or who were caring for a sick family member. But those laws were temporary, and only took into account the acute COVID-19 sickness, rather than SAR-CoV-2’s disabling long-term post-viral syndrome.
Enacting a permanent federal paid family and medical leave law for serious illnesses, as well as a paid sick day law for any medical need would also serve as a necessary bridge actually allowing patients recovery time not just from COVID-19, but from a spectrum of illnesses
Enacting a permanent federal paid family and medical leave law for serious illnesses, as well as a paid sick day law for any medical need would also serve as a necessary bridge actually allowing patients recovery time not just from COVID-19, but from a spectrum of illnesses. Such a law would also be more inclusive in meeting the needs of people with disabilities, particularly those who may not receive a disability benefit as offered by some employers.
One model to follow in creating a federal paid leave law could be the temporary disability insurance offered by several states, which predate family and medical leave. The states that have implemented paid leave were able to do so easily by building on their temporary disability laws. California’s program offers short-term wage replacement for workers who have been unable to perform their customary work for at least eight days and who have had state disability insurance deductions withheld from their paychecks. Any such program would need to be efficient, accessible for those facing cognitive disabilities due to long COVID, and designed to accommodate the day-to-day uncertainty of what it means to live with a post-viral condition.
One challenge in creating a policy response is that long haulers experience a disability that is neither static nor binary. Instead, the illness often follows intermittent patterns of remission and relapse. A patient could feel fine one day, but crash the next. They might feel nonfunctional early in a day, for instance, but then rebound toward being capable of working for a few hours later.
In 2021, the Biden administration moved to recognize long COVID as a disability under the Americans with Disabilities Act. However, the move still left a significant policy gap that doesn’t cover the many months of time that many long haulers can be out before qualifying for a federal long-term disability benefit. A federal paid sick days policy, were it to pass, could only cover a small fraction of the time a long hauler might be out of work.
Interdisciplinary researchers, including clinicians and scientists living with long COVID, are working to formally characterize the episodic nature of long COVID disability, using a model based on HIV, which also causes fluctuating symptoms. This type of research could lay the groundwork for disability measurement in long COVID and align closely with findings from other complex episodic illnesses, such as fibromyalgia, POTS, and chronic Lyme disease.
There’s much still to learn about long COVID, and large-scale efforts such as the $1.15 billion RECOVER Initiative through the National Institutes of Health (NIH) could lead to better bio-markers and treatments in the coming years. But for those whose lives and livelihoods have been upended by long COVID, waiting for progress while watching one’s savings account fall toward zero isn’t an option.
Access to short-term disability insurance should be an option available to all Americans in their time of need.
As the long COVID crisis garners increasing attention from clinicians, scientists, and policymakers, this is a long overdue moment to set policies right for the next generation of disabled people.