COVID “Long Haulers” Still Struggle with Coverage and Care

By Karen Davenport

More than 100 million people in the United States have been infected with COVID-19 in the three years since the pandemic began. Roughly 14 percent of these individuals have experienced not only an initial COVID infection, but also a constellation of long-term effects known as “long COVID.” This spring, the country will end the COVID-19 public health emergency, bringing an end to pandemic-related funding, infrastructure, and flexibilities. Meanwhile, millions of people continue struggling to find and pay for effective treatment for post-acute, COVID-related conditions.

We have previously written about long COVID and the insurance issues patients face when seeking treatment. This post provides an update on the progress—or lack thereof—towards covering the ongoing and unique care needs of these COVID “long haulers.”

Limited Knowledge and System Capacity Restrict Treatment Options

Three years into the pandemic, we have not yet pinpointed the causes of long COVID, and symptoms can vary widely. Commonly reported symptoms include fatigue, weakness, difficulty concentrating, headaches, cough or shortness of breath, chest pain, sleep problems, anxiety or depression, heart palpitations, joint or muscle pain, and changes in menstrual cycles. Long COVID may also lead to other conditions, such as diabetes, heart disease, and myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS).

Health systems across the country have created multi-disciplinary centers that offer long COVID patients help with managing pain, fatigue, behavioral health effects and other conditions. But patients must navigate “untenable,” months-long waiting lists to see specialists at long COVID clinics; most of these centers are located in urban communities, putting care further out of reach for long COVID patients who live in rural areas.

Moreover, patients currently have limited treatment options. The novelty of COVID-19 means that some post-COVID conditions may not yet be identified, and information on treatments’ effectiveness is still sparse, with researchers only beginning to enroll patients in clinical trials to test potential therapies for these conditions. Without clear evidence pointing to effective cures, clinicians often focus on managing symptoms. Overall, the dearth of proven treatments presents issues for patients trying to manage their condition and have their treatment—ranging from pulmonary and cognitive habilitation to antidepressants and Paxlovid—covered by their health insurance plan.

Long COVID Patients Confront Many Insurance-Related Obstacles

Patients who can access long COVID specialists or other providers may experience financial barriers to care or struggle with getting their long COVID care paid for by their health coverage.

Benefit Limitations and Plan Design

Benefit limitations on long COVID-related services may leave patients at greater financial risk when seeking care. Long COVID patients often receive services such as physical, respiratory, or occupational therapy to address symptoms including fatigue, shortness of breath or cognitive problems such as “brain fog.” Health plans frequently limit these benefits for enrollees, covering only a certain number of visits or ceasing payments for therapy services after the patient stops improving. Accordingly, even insured patients may face high out-of-pocket costs that pose significant barriers to needed care.

In addition to benefit limitations, underlying insurance plan designs pose financial obstacles. High deductibles, in combination with copayments and co-insurance, may require long COVID patients to pay for a considerable portion of their care before their insurance plan starts covering these costs. In 2022, 29 percent of covered workers were enrolled in high-deductible health plans; almost two-thirds of these enrollees shouldered deductibles over $2000 for single coverage, and more than half of enrollees with family coverage had an aggregate family deductible of $4000 or more. Economist David Cutler has estimated that treatment costs for long COVID could average $9000 per patient annually, meaning long COVID patients could be paying out of pocket for nearly half of their expected costs in some circumstances. In addition, considerable research has shown that high deductibles create barriers to care and impose financial burdens on people with chronic illnesses, particularly in the first quarter of the year when deductibles typically reset.

Medical Necessity

Long COVID patients may also be denied coverage of their care due to “medical necessity” review. Insurers typically scrutinize less common services and diagnoses more closely, sometimes reviewing the service to determine if it is “medically necessary,” often applying internal policies or using external treatment guidelines grounded in available scientific evidence and professional practice standards. With clinical trials for long COVID therapies only just beginning, the lack of evidence on effective treatments may result in plans not paying for a particular service or treatment. For example, an insurer denied coverage of a toddler’s hospital stay, even though a doctor had recommended in-hospital monitoring of symptoms that had lingered for months following a COVID-19 infection.

Access to Coverage

Finally, patients with long COVID may struggle to maintain their health coverage, if they receive it through their employer. The physical and cognitive limitations many long COVID patients experience can leave them unable to work sufficient hours to maintain eligibility for employer-sponsored health benefits. A recent study found that up to 4 million individuals in the United States are no longer working at all thanks to the health effects of long COVID.

Know your Rights: Options for Long COVID Patients

Patients Can Appeal the Insurer’s Decision

While patients have little recourse for some insurance-related obstacles, such as deductibles, enrollees facing coverage denials have appeal rights and other consumer protections. Long COVID patients whose health plan refuses to cover a treatment based on medical necessity may appeal this decision. At this stage, enrollees can submit additional information supporting the necessity of the service in question. If, after consulting with internal clinical experts, the plan denies the appeal, long COVID patients have the right to an additional, external (or independent) review. External reviews are typically conducted by state regulators. A recent study of insurance appeals found that consumers enrolled in plans sold on Healthcare.gov prevailed about 40 percent of the time. The availability of appeals beyond this stage varies depending on the type of coverage the patient holds.

Public Health Insurance Eligibility

Depending on their family’s overall income, patients who experience job loss or loss of income due to long COVID may become eligible for subsidized health plans on the Affordable Care Act Marketplace or qualify for Medicaid coverage. And thanks to the Affordable Care Act, health insurers can no longer deny these individuals coverage based on their pre-existing condition. However, to date 11 states have refused to expand Medicaid eligibility, which means that long-COVID patients in those states are unlikely to qualify for subsidized coverage if their annual income falls below the federal poverty level ($13,590 for an individual).

Patients with long COVID may also qualify for Social Security Disability Insurance (SSDI) if they can prove that they are too disabled to work, and over time these patients would then be eligible for Medicare. Long COVID patients, however, face administrative hurdles to Social Security disability eligibility, including the challenge of obtaining a clear diagnosis and the complex disability approval process.

Takeaway

The public health emergency may be coming to an end, but COVID-19 is still with us. In addition to the risk of new infections, long COVID patients continue to deal with a vast array of poorly understood symptoms and a limited set of treatment options. Insurance-related obstacles can pile on additional financial burdens. Coverage programs and insurance standards expanded under the Affordable Care Act provide a baseline of financial protection, and insured patients met with coverage denials can use the appeals process. But long-term solutions will depend on the scientific and medical communities building the evidence for effective therapies, and on policymakers closing coverage gaps and reducing consumers’ heavy cost-sharing burdens.