What is Long COVID?
On January 27, 2020, the then-Secretary of Health and Human Services (HHS), Alex M. Azar II, declared COVID-19 a public health emergency (PHE). An estimated 98,777,220 people have had COVID. Nearly one in five American adults who’ve had COVID have developed long COVID with debilitating symptoms that have lasted for months and sometimes years. Many of these individuals have been diagnosed with “post-acute sequelae of COVID-19,” more commonly known as long COVID. While new discoveries are made, there is very little known about these individuals, such as who they are, why they are sick, or what the impact is on their lives.
Long COVID is not a single condition but is rather a myriad of either new, returning, or ongoing health problems that patients experience after being infected with COVID-19. According to the Centers for Disease Control and Prevention (CDC), commonly reported conditions and symptoms include fatigue, malaise, cough, shortness of breath, heart palpitations, or neurological symptoms (such as difficulty thinking or concentrating, headache, cognitive issues, and autonomic symptoms). There are currently no generally accepted diagnostic tests or biomarkers, as many individuals experience debilitating symptoms but have normal blood work, electrocardiograms, and other test results. Therefore, long COVID is diagnosed by a health provider who considers a diagnosis of post-COVID conditions based on a patient’s health history, including a diagnosis of COVID-19 by positive test or symptoms or exposure, as well as a health examination. Further complicating matters, some medical professionals disregard long COVID as a psychological condition and not a medical issue warranting treatment and additional care, despite its prevalence.
The prevalence of long COVID is not yet well understood, but studies have pointed to just over one in four COVID-19 patients developing some sort of long-COVID condition—even if they had mild cases of COVID-19. A University of Washington study published in February 2022 found that 32.7% of COVID-19 patients treated in outpatient settings and 31.3% of hospitalized COVID-19 patients became long-haulers, patients who continue to have symptoms or develop symptoms associated with long COVID.
Long COVID’s Effect on Employment
According to the U.S. Bureau of Labor Statistics, unemployment was at approximately 4% before the onset of COVID-19. Unemployment increased sharply to about 15% with the onset of COVID-19 and slowly decreased back to pre-pandemic levels as of late 2022. However, throughout 2021 and 2022, unemployment remained above pre-pandemic levels despite increases in jobs from early pandemic levels. At the beginning of January 2022, there were 10.6 million unfilled jobs across the country, contributing to a myriad of economic issues: including small businesses losing money, local governments struggling to fill jobs, investors being more cautious, and corporate profits falling. Economists and other experts posited a number of explanations, including “a decline in workers’ willingness to tolerate low pay and poor working conditions, lack of access to childcare, concerns about contracting COVID-19, higher household savings, and demographic and immigration trends.” However, long COVID was and is rarely mentioned. Indeed, one study estimated that long COVID accounts for 15% of unfilled jobs.
Not only is unemployment an issue, but some long-COVID patients are reducing hours rather than taking time off. In fact, one Lancet study found that 46% of long-COVID patients, equaling 2.1 million workers, were reducing working hours. Many employer-based health benefits are based on working full time, so depending on the job, some individuals may lose employer-provided health coverage due to reducing their hours.
The effects of long COVID on the employment and healthcare landscapes are not yet well understood. However, many of the conditions associated with long COVID can limit an individual’s ability to work, even with jobs that allow for remote work and other accommodations. One estimate is that 10 million to 33 million working-age adults in the United States may be affected by disabling symptoms of long-COVID conditions. Some estimates indicate that up to 1.3 million people may be suffering from the syndrome and cannot return to work. In fact, two surveys of working age individuals who worked prior to getting COVID-19 have shown that between 22% and 27% of those individuals could no longer work due to long COVID. Moreover, the average age of patients with long COVID is about 40 years old, meaning individuals who are generally in their prime working years.
Long COVID’s Effect on Medicaid
As of September 2022, there were 90,933,769 individuals enrolled in Medicaid. Notably, over 60% of working adults have health insurance coverage through an employer. Individuals who can no longer work due to debilitating symptoms of long COVID could eventually lose their existing coverage and experience significant loss of income. The Patient Advocate Foundation reports that 13% of participants reported experiencing changes in healthcare coverage due to having long COVID. These individuals could qualify for Medicaid, specifically in states who have expanded Medicaid under the Patient Protection and Affordable Care Act (ACA). People living in states without expanded Medicaid or with limited expanded Medicaid may still not qualify due to such states not qualifying for enhanced federal matching funds as well as having more restrictive eligibility requirements and fewer programs. However, those individuals with high medical spending could still qualify for Medicaid through medically needy programs.
As previously mentioned, Medicaid provides essential health coverage and services to more than 90 million low-income, vulnerable people who would otherwise not be able to afford insurance. Even today, more than two million people exist at income levels below the federal poverty line (FPL) and will continue to lack access to affordable health coverage. The majority of people in the coverage gap are people of color. According to a report from the Center for Budget and Policy Priorities, this represents a “long history of racism and discrimination in employment, education, housing, and other areas that has led to higher poverty rates for people of color and their overrepresentation in low-paying jobs that don’t offer employer coverage.” This is particularly true for the states that have refused to adopt Medicaid expansion under the ACA.
Further complicating matters is the fact that many individuals who have found themselves unable to work due to long COVID had not been able to secure Social Security disability benefits due to being “too sick to work, but not quite disabled.” In other words, individuals were being denied Social Security disability benefits due to not meeting previous eligibility criteria. However, recently, the Offices for Civil Rights of the Department of Health and Human Services and the Department of Justice jointly issued guidance that long COVID can be a disability under Titles II and III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the ACA. The patient still needs to meet statutory definitions of disability under these laws and is still required to undergo an individual assessment, which may complicate matters for patients whose symptoms are difficult to assess or determine a cause for. Individuals who meet Social Security definitions and receive a determination of such often qualify for Medicaid programs.
The Effect of the End of the PHE on the Medicaid System
The pandemic has been and is straining the Medicaid system. From February 2020 to August 2022, Medicaid/CHIP enrollment has increased by 19.3 million enrollees, or 27.1%. Furthermore, as part of the Families First Coronavirus Response Act (FFCRA), the federal government enacted the continuous enrollment requirement, which essentially prohibits disenrolling beneficiaries from Medicaid during the PHE. Therefore, enrollment has continued to increase while terminations have been paused for the past few years. The PHE has been extended numerous times and was last set to end on January 11, 2023. HHS has indicated that they will give at least a 60-day notice before the PHE ends. On November 11, 2022, HHS did not provide a 60-day notice indicating that the PHE will end and has not provided any sort of notice regarding the end of the PHE, likely indicating that the PHE will be extended for another 90 days, until April 11, 2023. However, on December 29, 2022, President Biden signed the Consolidated Appropriations Act (CAA) into law, which decoupled the continuous enrollment requirement from the PHE. This means that the continuous enrollment requirement will expire on March 31, 2023, and states will be authorized to begin the redetermination process as soon as February 2023.
Previously, the policy was that when the PHE ends, states will have 14 months to review the eligibility of every Medicaid enrollee, including the many enrollees who haven’t been in contact with state and county agencies in over two years, may have moved, and may not understand the renewal process. According to CMS, this timeline remains in place. States will have to process millions of eligibility determinations, which will prove to be operationally challenging for states, health plans, and providers. Not only will some individuals be found ineligible, but many individuals who are eligible after the PHE may become uninsured through procedural errors due to the immense workload for state and county Medicaid eligibility workers. Procedural errors may include Medicaid enrollees not receiving proper notice to renew or not returning the requested paperwork on time.
There is a significant need for Medicaid agencies to make significant updates to eligibility systems, train eligibility workers, and deal with the many inquiries from enrollees who may be confused and frustrated with renewal processes and/or why they were terminated from programs. Furthermore, these agencies will have to face these issues all while facing unprecedented staffing shortages. Due to these issues, several groups had requested that HHS provide more than 60 days’ notice before the PHE ends, with some asking for 120 days’ notice. Even with six months’ notice, states would face an unprecedented workload and the Medicaid infrastructure may experience even more strain. However, that is no longer within the realm of possibility since the signing of the CAA, and now states have until March 31, 2023, to prepare for the on slot of redeterminations and terminations that come with the end of the continuous enrollment requirement.
The Perfect Storm
The combination of unemployment during the past three years, disability caused by long COVID, and the ever-nearing termination of the continuous enrollment requirement on March 31, 2023, have created the perfect storm to burden the Medicaid system in the coming years.
- Individuals with long COVID who became eligible for Medicaid during the continuous enrollment requirement period will need timely Medicaid evaluations to receive the care necessary for treating long COVID conditions. Some individuals may lose coverage.
- Many individuals previously eligible for Medicaid who became ineligible for Medicaid in normal circumstances (e.g., by getting a job and becoming income ineligible) but were protected by the continuous enrollment requirement will be terminated from Medicaid and may either need assistance with finding other healthcare coverage or may contest the determinations through appeals and state fair hearing processes.
- The millions of redeterminations that will need to occur within 14 months of the termination of the continuous enrollment requirement will overwhelm and overwork local eligibility workers and offices and could lead to procedural and substantive errors in redeterminations causing eligible enrollees to be terminated from Medicaid.
It is unclear how this strain will impact the Medicaid system overall. Many beneficiaries may lose coverage, redeterminations may occur in unprecedented numbers (burdening eligibility workers), and procedural errors may occur. However, it is foreseeable that there will be issues with timely processing of eligibility determinations and redeterminations and potential procedural errors that could have devastating effects on beneficiaries. Since the enactment of the CAA, States have until March 31, 2023, to prepare for many redeterminations that will be required. CMS has recently posted suggestions on how states can prepare for and engage in the redetermination process. Key strategies include:
- Partnering with managed care plans to obtain and update contact information.
- Sharing renewal files with plans to conduct outreach and provide support to individuals enrolled in Medicaid during their renewal period.
- Enabling plans to conduct outreach to individuals who have recently lost coverage for procedural reasons.
- Permitting plans to assist individuals to transition to and enroll in marketplace coverage if ineligible for Medicaid and CHIP.
There is no doubt that this process will be arduous, however, states and managed care plans can work together to help streamline the process and help prevent errors.