Long COVID is a bummer. Even mild infections of the coronavirus are leading to weeks and months of lingering symptoms such as loss of smell, confusion due to mental brain fog, and fatigue.

But severe outcomes, such as heart disorders and kidney disease, are appearing, sometimes well after people have recovered. Vaccines appear to waylay some of the ill effects, but large-scale studies are finding in inoculated people with “post-acute sequelae of SARS-CoV-2 infection” or PASC.

This situation is precarious for the economy, given 20-40% of adults may experience COVID fallout in the long term. Health plans and employers could respond by making sure their employees receive comprehensive care, but that could be expensive, given many long haulers need to see medical specialists.

Researchers at the City University of New York predict that the median case of symptomatic COVID could result in $6,000 in lost productivity over the course of a year. So, for local employees confused about how to get care or navigate insurance, here’s a simple guide.

This reporting is also featured in a recent Gothamist article on the impact of long COVID on the workforce.

Visit your primary doctor. Ask for a specialist.

Treating long COVID and PASC remains difficult because the conditions express themselves in so many different ways. An analogy would be brain cancer. More than 120 types of brain tumors exist, and precise treatment can be impeded without timely identification of what’s happening inside the body.

The RECOVER Initiative, a $1.15 billion federal study on long COVID and PASC launched in spring 2022, declares there are “200+ more symptoms and counting.”

Karyn Bishof, president of the COVID-19 Longhauler Advocacy Project, said patients need to be diligent when it comes to knowing the different signs of the disease and finding the right medical professionals to address it.

“Every primary care provider in the country needs to get to a level where they can screen a patient and identify long COVID or its associated conditions,” Bishof said because delays in diagnosis will only slow down the referral to a specialist.

NYC Health + Hospitals has set up an AfterCare resource center, where people can find information on obtaining care through the city’s public health care system. NYU Langone and Mount Sinai also run long COVID treatment centers, and a large list of facilities exists for New Jersey.

Current wait times for specialists can last up to 18 months, Bishof said, so get in early.

If a long COVID patient feels that they’re waiting too long, they can typically file a complaint with the provider, which must respond by law in places like New York and New Jersey. If that fails, they can escalate the issue to local officials, such as those in New Jersey’s Department of Banking & Insurance or New York’s Department of Health.

Make sure your doctor uses the U09.9 code

Long haulers, like many people with chronic disease, will likely face the challenge at some point during their care of proving their “medical necessity.” No specific treatments have been approved to directly address long COVID — and how it impacts organs like the heart, lungs and nervous system. That’s because long COVID studies are mostly in their early stages.

A chicken-egg scenario often arises with getting health plans to cover treatment: Doctors can try known medications or therapies to help those organs, but the insurance companies want evidence that doing so can work.

“Insurance companies will sometimes disallow certain costs as not medically necessary, particularly in situations where there is that kind of gray area about medical necessity,” said Joel Cantor, director of the Center for State Health Policy at Rutgers University, told Gothamist. “That's an ongoing challenge, particularly for folks who have multiple symptoms.”

Medical necessity is initially judged by a person’s physician, and doctors need to document the conditions correctly in order for patients to receive insurance coverage.

An essential part of this process is inputting a code specific for post-COVID disorders — U09.9 — into medical records. This code is part of an international system — curated in part by the CDC — that must be used by any health plan or health care provider using electronic records in the U.S.

The U09.9 code only became effective last October, and Bishof said some medical professionals still aren’t familiar with it, even though it can help justify claims for treatments. Even getting a prescription for routine medications related to COVID-caused symptoms or disease might be difficult without this code.

If you’re denied tests or treatment, file an appeal

Even if a long COVID patient’s primary doctor or specialist deems a treatment plan as a medical necessity, health insurance providers can still deny the claim.

If this happens, Maanasa Kona, an assistant research professor at Georgetown University’s Center on Health Insurance Reforms, said patients can submit additional information to support their need for the disputed services.

Kona said insurance plans use scientific evidence or guidance from physician organizations to define what are necessary treatments. But so little is known about how to treat long COVID so most therapies would be considered unproven.

“Call the insurance company, explain your situation, and ask how to do this,” said Cantor. “They're legally obliged to disclose everything to you — all of your rights.”

Both Cantor and Kona stress that long COVID patients facing medical necessity denials have options to appeal. This applies to people with private insurance or a public plan like Medicaid. They say to first file an appeal with the insurance plan — and ask doctors or health care providers for help.

The appeals process will likely vary depending on coverage. Cantor said people working at larger companies with employer-sponsored plans to work with their HR department. Employees at smaller companies may need to directly contact their insurance broker or ask their employers to act as an intermediary.

If an internal appeal is also denied by the health insurance plan, long COVID patients can seek an independent review from a state regulator. New Jerseyites can request such a review by emailing ihcap@dobi.nj.gov or calling 1-888-393-1062 (or 609-777-9470). New Yorkers can do likewise by visiting the Department of Financial Services website, emailing externalappealquestions@dfs.ny.gov or calling (800) 400-8882.

Some options are disappearing

Patients should be aware that key pandemic-era subsidies that help reduce out-of-pocket health costs are at risk of ending. So patients with long COVID symptoms should not delay in getting care.

The American Rescue plan, ratified in March 2021, allowed people to purchase better health care plans from their state ACA marketplaces. But these subsidies will expire by the end of the year unless renewed. The health policy institute KFF estimates that 3.7 million people would lose extra benefits and many more who are enrolled in the marketplaces would see premiums double.

Likewise in the coming months, millions will likely lose access to Medicaid, the federal and state health plan for people with limited incomes. Prior to COVID-19, states had to conduct annual audits to make sure Medicaid enrollees still qualified for the benefits. But these “eligibility determinations” were paused during the pandemic. Kicking people off health care as a deadly virus spreads could put many more at risk.

Eligibility determinations will return if the country’s public health emergency is declared over by the U.S. Health Secretary — a decision they have made every 90 days since January 2020. The next signature is due in mid-July, but a renewal is expected.

Health policy experts predict that 5 to 14 million people will be determined ineligible for Medicaid whenever the decision goes the other way.