By Marissa Wagner Mery
Long COVID exposes an often-unacknowledged facet of disability: that one is far more likely to develop a disability than be born with one.
Estimates suggest that, at present, approximately 10 – 20 million Americans are now afflicted with the array of debilitating symptoms we now call Long COVID, which include fatigue, shortness of breath, and cognitive dysfunction or “brain fog.”
The upswell of advocacy and awareness around Long COVID should be mobilized to call attention to and address the challenges faced by newly-disabled adults, particularly with respect to employment.
Overall, approximately 80% of disability is acquired, and the average age of onset is in one’s early 50s. Faced with an often-abrupt change in their interactions and environment, newly-disabled adults lack institutional support structures that could aid their life at work and at home. While disability is more likely to develop later in life than be present at birth, our interventions remain concentrated in children and younger individuals. Not surprisingly, the later an individual is diagnosed with a disability, the less likely they are to be employed.
As a critical care physician and anesthesiologist, I care for individuals in the acute phases of life-threatening injuries and illnesses. Success is benchmarked by statistics that quantify mortality and clinical complications that occur during patients’ hospital stays. Longer term outcomes, including independence in activities of daily living (ADLs), psychiatric illness (depression, anxiety, and PTSD), and employment, are measured less frequently and essentially never required in assessments of health care delivery and quality.
Yet these long-term outcomes — a return to their personal baseline health, or optimization of a decidedly new normal — are how my patients typically measure their recovery. They yearn for reintegration into their homes and communities. Many explicitly state a desire to return to work, but approximately 40% of my previously-employed patients will be jobless one year following their acute illness. While employment confers financial stability, for many it also confers a sense of purpose and community.
Physicians and nurses lack tools to help patients return to work, and comprehensive programs dedicated to supporting patients from hospital discharge to employment reentry are rare. In fact there is only one employment reentry program, InSPIRE, for survivors of critical illness documented in peer-reviewed medical literature.
Based in Scotland, InSPIRE’s results were astounding. In the year following participate, 88% of participants returned to paid or volunteer employment positions, a significant increase over the 46% historical rate. The program focused on patient support, self-efficacy, and personal disclosure. Whether that would work in the U.S. has yet to be determined, but our team is among a few that would like to try.
In my own exploration of improving employment reentry for our patients, two hurdles presented themselves repeatedly. First, the siloed laws and policies that govern the United States’ health, education, and employment sectors impede collaborative projects. The multisector projects that do occur are often inefficient and succumb to the deficits of poor organization. And second, while we annually invest billions of research dollars to better understand and/or mitigate many clinical conditions, non-clinical outcomes (such as the experience of symptoms post-acute illness) receive far less funding.
Siloed institutions and sectors fail our patients for obvious and more opaque reasons. For example, I see a fair number of patients with new spinal cord injuries. Most will never walk again, many will lose some or all function in their arms and/or hands, and some will require a portable ventilator to breathe. Their post-acute care rehabilitation and support varies significantly by both insurance coverage and geography. And, regardless, return to employment will require new workplace accommodations at a minimum; sometimes it requires new training or a career change.
While the vocational rehabilitation department of the Texas Workforce Commission is approximately one mile from my hospital, there is no direct path from hospital discharge to their services. It can take years for patients to be connected to the services they need, and earlier access is too often the result of chance or socioeconomic privilege. A systemic solution to identify patients at high-risk of job loss coupled with early detection and intervention does not exist, because, like most places, our entities are functionally separate, and a myriad of complex processes required to track and connect patients has yet to be overcome.
Moreover, ameliorating this problem at scale requires far more than a successful pilot project or a series of local collaborations. At present, financial incentives are misaligned for change. A hospital or health insurer that invests in an employment program has no hope of recapturing presumed economic gains. Thus, while such a program would likely show a societal benefit, it suffers from being a wrong-pocket problem, meaning the financial benefits are not returned to the institution fronting the costs. Without solving for this, systemic change is unlikely. Communicating across siloed structures is challenging, financing will likely prove to be more so.
Similarly, research into how we could best build transition and employment programs are stymied by current funding mechanisms for health care. Similar to the National Institutes of Health’s reticence to fund projects focused on health disparities and community interventions, the long-term impacts on disability and its mitigation is underfunded, even when resulting from clinical diseases that receive extensive funding.
There are institutions such as Patient-Centered Outcomes Research Institute and the Robert Wood Johnson Foundation that invest in this type of work, and hopefully more will follow. Moreover there is growing investment in developing metrics to improve a wider range of patient-reported outcomes, but broader health sector support of non-clinical processes that improve non-clinical outcomes is still incredibly rare.
So why look to COVID as a potential catalyst for change?
The Long COVID community is unique in its rapid growth, media presence, and (appropriate) insistence that their lived experience should influence funding and research. The community has also distinguished itself by actively defining Long COVID for the medical community, via social media and other tools. It has demanded acknowledgement that problems that may be invisible to others are incredibly debilitating to those experiencing them. Coordinated, influential, and unfortunately growing, it mobilizes individuals who “want nothing more than to resume their old lives” regarding their rights and opportunities. Moreover, Long COVID is almost ubiquitous now in its community presence — practically everyone is familiar with the condition, and somewhere between 10 – 25% of the population may experience it at some point.
Since the White House has stated that Long COVID can be recognized as a disability under federal civil rights laws, including the Americans with Disabilities Act, people with the condition may receive reasonable accommodations at work, which could raise awareness and action for people with other invisible disabilities. Both the diagnosis and definitions of Long COVID accepted under the ADA limit eligibility, but there is hope that in the future these criteria will expand to include patients’ lived experiences.
As we contemplate what it means to build back better, I hope we completely reimagine our view of acquired disability and how we respond to it.
Marissa Wagner Mery, M.D., MBA, is a critical care physician and assistant professor at Dell Medical School at the University of Texas at Austin.