Here’s what people with long Covid need to know about navigating health insurance

Navigating the health insurance system is often difficult and overwhelming, even in the best of times. For patients with long Covid, a relatively new condition that frequently leaves patients with a lengthy and unpredictable list of debilitating symptoms, it can be especially nightmarish.

“Even if you remain on the same [health insurance] plan you had before Covid, you will probably utilize the health-care system more, whether it be more office visits, more prescription medications or even more medical devices,” said Caitlin Donovan, a spokesperson for the National Patient Advocate Foundation.

Indeed, nearly half of people with long Covid reported increased medical expenses, according to a recent survey conducted by the Patient Advocate Foundation. The nonprofit, NPAF’s sister organization, polled 64 people with the condition between 2020 and 2022. Meanwhile, 13% of respondents in the PAF survey said they’d experienced changes to their health-care coverage as a result of long Covid.

In all, one Harvard University researcher estimated that long Covid could leave patients with an extra $9,000 a year in medical expenses.

Here’s what you need to know about navigating health insurance with the condition.

Between 2 million and 4 million full-time workers are out of the labor force due to long Covid, according to recent research from the Brookings Institution.

If long Covid causes you to lose or leave your job and, therefore, your employer-sponsored health insurance, don’t panic. You may have several options for getting new coverage, said Karen Pollitz, a senior fellow at the Kaiser Family Foundation.

There are resources you can turn to for help deciding the best route to getting reinsured. If you have a diagnosed condition, including long Covid, you may be able to get support deciding on and enrolling in a plan with the Patient Advocate Foundation.

At no charge, you can also consult with a local health-care “navigator,” an expert who can help you search insurance plans and enroll in one on the Affordable Care Act’s marketplace.

1. Join a family member’s plan

Losing your job-based coverage triggers a 30-day special enrollment opportunity to join a family member’s plan, Pollitz said. You might consider getting covered through your spouse’s employer or a parent’s, if you’re under 26.

2. Extend workplace coverage

If your former company had at least 20 employees, you might also have the option to get insured through the Consolidated Omnibus Budget Reconciliation Act, or COBRA, Pollitz said.

COBRA typically allows people who leave a company to remain on their workplace insurance plan for up to 18 months — although it’s not cheap. (It tends to be pricey because you pick up the part of the health insurance tab your former company was covering.)

There are exceptions that can stretch coverage. If the Social Security Administration considers you disabled (long Covid can qualify as a disability), you may be able to stay on COBRA for an additional 11 months. Those who qualify for Medicare around the time they part with a company may also qualify for an extension beyond the typical 18 months.

3. See if you qualify for Medicaid

If your job loss has left your household with a substantially lower income, you may be able to enroll in Medicaid, Pollitz said. “This is comprehensive public coverage with no monthly premium,” she said. Eligibility is based on your current income, Pollitz added, and you can sign up year-round.

If you’re receiving disability benefits from a private insurer and/or through your employer, that income won’t necessarily disqualify you for Medicaid; you’ll want to check whether or not the payments are subject to taxes.

“If the benefits are taxable as income, then they would count toward Medicaid eligibility,” Pollitz said.

4. Sign up for a plan on the public exchange

Long Covid patients who have recently become unemployed may also be able to get health insurance on the Affordable Care Act’s marketplace. Losing your job triggers a 60-day enrollment period on the marketplace, where many of the plans are subsidized.

“Fortunately, ACA insurers are not allowed to discriminate based on health,” said Jonathan Gruber, a professor at the Massachusetts Institute of Technology and a former director of the health-care program at the National Bureau of Economic Research. “So having long Covid will not raise costs.”

5. Explore Medicare eligibility

Lastly, if you end up qualifying for Social Security Disability Insurance because of your long Covid, you may become eligible for Medicare, even if you’re younger than 65, after a two-year waiting period.

If you’re already 65 or older when you lose your job, Medicare may be your best option for coverage, Donovan said.

“Medicare comes with the benefit of an almost universal network, in contrast to marketplace plans,” Donovan said, adding that delaying enrollment once you’re eligible can also subject you to financial penalties.

If your case of long Covid hasn’t disrupted your employment and you remain insured at work, you’ll want to make sure you’re signed up in a robust plan, Donovan said.

A more comprehensive workplace plan typically comes with a higher monthly premium but lower out-of-pocket expenses and more options, Donovan said. It’s especially important, she added, that you get the most generous prescription drug plan, if your company offers a variety of them.

Educate yourself as much as you can about your coverage, Donovan said, including information on providers and treatments that you might formerly not have considered.

Long Covid patients, for example, often seek physical therapy and mental health services, she said.

You’ll also want to make sure you’re up to date on your employer’s paid time off and sick days policy.

Clinical trials, many of which are covered by health insurance plans, can be a great option for long Covid patients, Donovan said.

“Long Covid is still new, so anyone who participates in a clinical trial will be contributing to our understanding of the condition and advancing our ability to treat it,” she said.

And, she added, “clinical trial participants may have access to the newest safe and effective treatments.”

Trials take place all over the country, and some are even virtual, Donovan said. People can find out more at clinicaltrials.gov and by talking to their doctor.

Keep in mind, Donovan said, that your health insurance plan may require any trials be in-network and it may only cover certain costs of the experience.

Still, Donovan said, “it’s worth investigating.”

Meanwhile, those looking to save money on prescription costs should ask about generic options, which tend to be cheaper than the brand-name medicines.

In addition, Donovan said, programs like GoodRx may help you cut costs on certain drugs. And the Patient Advocate Foundation has a charitable copay program to which those struggling financially can apply.

Finally, Donovan said, with so much still unknown about long Covid, insurers may be more likely to reject coverage for a particular treatment or service. Patients should fight back, she said.

“Don’t lose hope,” Donovan said. “Go through the appeal process: Over 40% of denials are overturned in the patient’s favor.”