By Karen Davenport

As Americans return, retreat, and return again to schools, workplaces, and other locations emblematic of pre-pandemic times, life is anything but normal for millions of people experiencing the long-term after-effects of COVID-19. Post-viral syndromes, which develop when a reaction to a virus fails to resolve following initial infection, followed the 1918 flu pandemic, SARS, and other viral outbreaks. COVID-19 is no exception. Retrospective studies estimate that approximately 14 percent of COVID-19 survivors between the ages of 18 and 65 experience new symptoms and diagnoses up to six months after their initial COVID infection. New evidence suggests children can also experience new post-acute conditions. Individuals with these sequelae (conditions resulting from a previous disease) or “long COVID”—applying the 14 percent incidence rate of post-COVID conditions to the CDC’s current data on reported COVID-19 cases by age, approximately 3.5 million non-elderly adults—can experience fatigue and physical weakness, chest pain, cough or shortness of breath, difficulty concentrating and memory problems, anxiety or depression, and other physical, cognitive, emotional, and neurological complications. Patients who are older or have pre-existing conditions are more likely to experience post-acute conditions – with women more likely to experience fatigue and men more likely to have cardiac complications and hypercoagulability.*

Health systems across the country offer these patients help with managing pain, fatigue, behavioral health effects and other conditions. In some cases, such as when patients develop diabetes after a bout of COVID-19, clinicians have well-established treatment protocols. But COVID-19 is a novel disease, with clinicians and researchers still identifying its after-effects. Some post-COVID conditions may not yet be known, and the research needed to demonstrate treatments’ effectiveness for many post-COVID conditions is sparse. This dearth of information on long COVID presents issues for patients trying to manage their condition and have their treatment covered by their health insurance plan.

Insurer Practices Pose Barriers to Long COVID Patients

Medical Necessity

Health insurance plans automatically pay for familiar and frequently used tests, treatments and procedures for common conditions, but apply more scrutiny to less common services and diagnoses. In these cases, the plan may accept the treating clinician’s judgement and pay their submitted claims. Or, the plan may determine the service was not “medically necessary,” and deny the claim. While plan definitions of medical necessity vary, they are usually tied to scientific evidence (particularly for newly identified conditions or new interventions) and professional standards of practice. With this information, plans may develop their own treatment guidelines for a particular condition, thus defining which services they consider medically necessary, or they may refer to clinical guidelines developed by external groups. Similarly, many plans exclude coverage of unproven therapies outside of clinical trials. Without evidence of effectiveness, such as in the case of long COVID, plans may not pay for a particular service or treatment

Benefit Limitations

Furthermore, COVID long haulers with fatigue, shortness of breath or cognitive problems—including “brain fog”—may receive services such as physical, respiratory, or occupational therapy. Many plans restrict coverage for these therapies to a defined number of visits or will only cover therapy services as long as the patient continues to improve, refusing to pay for care beyond these parameters. Long COVID patients may run into such limitations as they seek treatment to manage their condition, resulting in large out-of-pocket costs even for the insured which may prevent patients from receiving needed care.

Options for Long COVID Patients Facing Insurance Barriers

Patients Can Appeal the Insurer’s Decision  

Patients with long COVID have some avenues for obtaining payment for their care. If their health plan refuses to pay for some aspect of their treatment based on medical necessity, patients with long COVID may appeal this decision, perhaps submitting additional information from their provider to explain why they needed the disputed service or services. The plan, in turn, will typically consult with internal clinical experts to see if these experts think that the services under dispute were medically necessary. If the plan denies this appeal, patients with long COVID may request an external (or independent) review, usually with a state regulator, which will again involve a clinical expert evaluating whether the care in question was medically necessary. Depending on what kind of insurance policy they have, patients may have the right to further appeals beyond this step—Medicare Advantage enrollees, for example, can access multiple appeals beyond the external review in certain circumstances.

Leveraging Employer Purchasing Power

As the health care system and society at large grapple with the long-term effects of COVID-19, patients experiencing trouble getting their long COVID care paid for might be able to engage additional allies on their behalf. For example, employers whose workers cannot return to work because they have brain fog or fatigue may have some leverage with their insurance plan or—if they are a self-insured employer—the insurance company that administers their health benefits.

New Research is Paving a Path Forward

With time, we should know more about the aftermath of COVID-19 infections and how to treat subsequent conditions that arise. As of October 1, 2021, clinicians and insurers may use the Center for Disease Control and Prevention’s new ICD-10 code for long COVID: U09.9, Post-COVID-19 condition, unspecified. This optional code will flag post-COVID conditions and help researchers understand the range and variety of long-term symptoms COVID patients experience. Providers can also use this code to indicate the relationship of a previous COVID infection to the current diagnosis, which may simplify some payment disputes – some payers, such as Medicare, will assess both procedure and diagnosis codes when determining whether to pay a claim. On a longer timeframe, the National Institutes of Health’s RECOVER initiative may lead to new treatment and prevention strategies for a range of post-COVID conditions.

Takeaway

Long COVID patients experience multiple obstacles to obtaining the care they need for this novel condition—poorly understood symptoms, limited treatment options, uncertain prognoses, and potential denial of coverage for the care they need by their insurer. In the short term, patients with long COVID will need to understand their appeal rights should their health plan refuse to pay for their care. Over time, with new knowledge of and experience with long COVID, providers, payers, and other stakeholders should be able to improve care and coverage for patients suffering from the extended effects of a COVID-19 infection.

*Author’s note: updated October 19, 2021 to clarify calculations and provide additional information on patient population.