In June 2021, 32-year-old Alyssa Manes was diagnosed with POTS, a nervous system disorder that her doctors believe was triggered by COVID.
POTS, or postural orthostatic tachycardia syndrome, caused numbness throughout her arms and legs, a pins-and-needles sensation, and a sudden drop in her heart rate.
Because his heart problems had not gone away, in early 2022 his doctors began conducting a series of lab tests in an effort to better understand his prolonged COVID symptoms.
When Mays presented the test to his insurance — Anthem Blue Cross — the provider deemed the test medically unnecessary and refused to cover the cost. He’s now on the hook for the medical bills, which have already cost him more than $10,000 out of pocket.
“I’m sad where I left off now,” said Manas, a Ph.D. student in Sacramento, Calif. Several of his insurance appeals have been denied. “I don’t even have the mental bandwidth to fight this, because it has become clear that it is most likely going to fail.”
Manas is one of several long-time COVID patients in the United States interviewed by NBC News who say their insurance providers are refusing to provide coverage related to their illness.
But there are likely to be many more. According to research by the Brookings Institution, a Washington-based think tank, 4 million full-time workers have been thrown out of the labor force due to prolonged Covid.
NBC News has sought comment from insurance providers.
Experts say that for some people, the care needed to manage their chronic illness has left them in medical debt, which can easily add up to thousands or even tens of thousands of dollars. It’s not clear how many people are being denied coverage, but a paper According to an estimate published in May in the JAMA Health Forum, the individual medical costs of prolonged Covid could reach almost $9,000 a year.
Experts say part of the problem is the ambiguity of long-lasting Covid symptoms, which can range from extreme fatigue to loss of taste and smell to a weak heartbeat. There is no official test to diagnose the condition, nor is there any specific recommended treatment. This makes it difficult for doctors to give the right treatment.
Before paying, insurance companies often want to know whether a treatment is proven to work.
Long-term COVID patients can fight denied claims through appeals or going to court — a time-consuming and exhausting approach for any patient, said Michelle Johnson, executive director of the Tennessee Justice Center, a legal aid group that has Has helped Covid patients get health coverage for a long time.
“They’re trying to keep their jobs or take care of their families,” she said, “and there’s so much bureaucracy and red tape that they’re just drowning in it.”
Experts say insurance companies often reject claims for care related to Long Covid because they do not see it as a “medical necessity”.
Word Linda Bergthold, a former health policy researcher at Stanford University’s Center for Health Policy, said that’s what insurance companies use to assess whether they should accept or deny a claim.
The term has been used by insurance companies for decades, but was not given a formal framework until the late 1990s, which Bergthold helped develop.
For care to be considered medically necessary by an insurance provider to a patient, there must be sufficient research or evidence showing that it works, he said.
It’s “an important issue for the long term with Covid,” she said, “because the disease is so new and still poorly understood.”
“The research, like everything with Covid, is brand new,” she said. “Nobody really knows what works and nobody really understands why some people have it more than others.”
To be sure, by 2021, there will be diagnostic codes for long Covid — the key tools doctors use to characterize medical diagnoses for insurance coverage, Cardiovascular Diseases of the Cedars-Sinai Medical Center in Los Angeles said expert Dr. Alan Quan. However, those codes don’t always cover the myriad health problems associated with prolonged Covid, he said.
For example, POTS has no standardized diagnostic code and has only recently been linked to Covid.
Doctors can work hard to get a formal diagnosis for long term COVID to help with insurance, although there is no official test for long term COVID and the tests that are done are not covered by insurance May go.
Kwan said some patients may eventually get coverage after submitting an appeal to their insurance, but usually not before spending hundreds of dollars.
Others may not be so lucky and may be forced to pay for most of their care out of pocket.
That’s what happened to Amy Cook, 51, of Orange County, California.
In May 2022, he was diagnosed with COVID, which caused him several long-term health problems including chest tightness, irregular heart rate, headaches and visual loss.
Cook, who works a full-time job as chief operating officer for a consulting agency, said she was bedridden for four months due to her prolonged COVID symptoms.
Around October, her doctor recommended she try naltrexone, a drug used for opioid addiction, which has shown promise in lifting long-term Covid symptoms as well as hyperbaric oxygen. Both treatments are being tested in clinical trials as potential treatments for the condition, although neither has been approved by the Food and Drug Administration for the disease.
Her insurance provider, Aetna, declined to cover most of the cost of the treatment.
Cook said of her out-of-pocket expenses, “I’m at $28,000 to date and I have more treatments coming.”
Cook said she is currently in a financial position to be able to self-fund the treatment, although she has still not recovered from her illness and the expenses could easily escalate.
“I don’t know when I’ll be able to stop,” she said.
Alex Kepnes, an Aetna spokesman, said in a statement that there is no single definition for long-term COVID and that coverage decisions are “based on medical necessity and evidence-based guidelines.”
“We are focused and committed to providing our members with access to care and treatment for medically necessary services to help them heal their conditions and improve their health,” he added.
What can be done?
Johnson of the Tennessee Justice Center said patients can improve their chances of getting their claim approved by making sure they have a plan in place before even entering the doctor’s office.
- Ask how much the care will cost.
- Ask the doctor to clearly explain on the insurance paperwork why the care was needed.
Working with a doctor can be “very effective,” Johnson said, because they are usually trained to know what meets insurance providers’ standards for coverage.
If that doesn’t work, and the insurance denies the patient’s claim, the patient can appeal the decision, she said. Under the Affordable Care Act, all health insurance must have an external appeals process that allows a patient to challenge a provider’s decision.
“The idea that you can be denied services without an opportunity for appeal is no longer true,” she said.
If still unsuccessful at this point, patients can start to panic, Johnson said, because the outstanding bill could be moved to collections and patients could hurt their credit scores. Providers often provide very little time for payment, and appeals often take months.
Manas, of California, said she was flummoxed at least once when her insurance provider took too long to get back to her on an appeal and spent hundreds of dollars on her bill.
What a patient does after that will depend on their health insurance, Johnson said.
For example, people with Medicaid can file a claim in court if they feel the denial was unfair. For people on private insurance, it’s less clear what they can do, but one option is to contact the state’s Department of Commerce and Insurance, which regulates insurance companies.
Johnson suggested patients file their complaints saying, “You licensed this insurance to do this in our state and they are continually denying essential benefits.”
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