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Since she tested positive for the coronavirus in April 2020, Josie Cabrera Taveras has found herself sleeping for up to 15 hours a day, stopping in grocery store aisles to catch her breath, lapsing in and out of consciousness and unable to return to her job as a nanny.
She believes that she is one of thousands, possibly millions, of Americans who may have a condition known as “long COVID.” The Biden administration has said people with the condition could qualify for federal disability protections and benefits, which can include health care, housing and unemployment benefits.
But like many others who may have long COVID, Taveras, 31, of New York, has had a hard time proving it.
Two brain MRIs, several heart ultrasounds, dozens of lung X-rays, two stomach endoscopies, one colonoscopy and multiple CT scans have all provided the same results: Everything looks normal. “It’s something doctors can’t explain yet, what’s happening to me,” Taveras said.
With no direct medical evidence of her condition, she has been turned down for disability coverage twice. Even a note from a prestigious post-COVID clinic in the Mount Sinai hospital system, attesting that Taveras “continues to experience daily symptoms and is currently unable to work,” was not enough.
In July, at a White House event celebrating the Americans with Disabilities Act, President Joe Biden promised “to make sure Americans with long COVID who have a disability have access to the rights and resources that are due under the disability law.”
But with no widely agreed-on method of diagnosing the ailment, those who believe they have long COVID are finding it difficult to qualify under a system that is unfamiliar and already tricky to navigate.
Studies have shown that a significant number of COVID-19 patients continue to seek treatment for a wide range of medical conditions many months after a diagnosis. The American Academy of Physical Medicine and Rehabilitation estimates that 3 million to 10 million Americans may have long COVID.
Yet many of those seeking benefits cannot produce a positive coronavirus test, which were in short supply at the beginning of the pandemic. And lab results and scans often show nothing unusual for those continuing to experience symptoms.
“I expect the tests to come back normal,” said Dr. Luis Tatem, an infectious-disease specialist who has been treating Taveras and other long COVID patients at the University Hospital of Brooklyn. He added: “We’re used to having a laboratory to back us up. And for this, you don’t.”
Since December 2020, the Social Security Administration has determined that about 16,000 applicants were able to provide medical evidence supporting COVID-19 as one of their impairments, according to Nicole Tiggemann, a spokesperson for the agency, which was not flagging COVID cases before that.
But she would not say how many of those 16,000 applicants had been approved for benefits, or how many people claiming long COVID as a condition had been denied. Many cases are probably still pending; wait times for a determination can stretch for five months or more.
The pandemic forced the Social Security Administration to largely shut down in-person services, and some experts predict a flood of applicants with long COVID in the coming year, on top of the agency’s already-strained workload.
“Addressing the disability backlog is one of our top priorities,” Tiggemann said via email, acknowledging that the pandemic had increased wait times. Biden has called for an increased $1.3 billion for the agency’s budget for the 2022 fiscal year, but his proposal is part of the current negotiations in Congress, and it is unclear whether it will pass.
About 8.1 million disabled workers and 1.4 million of their family workers receive disability benefits, which average about $1,280 a month. To qualify, applicants must demonstrate a disability that substantially limits their ability to work and has lasted, or will last, for at least a year. Typically, the Social Security Administration uses medical assessments or health records to determine whether someone qualifies, and a vast majority of those approved for disability stay on it for life.
Getting approved can be difficult. Between 2009 and 2018, the Social Security Administration denied 66% of applications on average.
But some people with long COVID symptoms have had success — even without a positive coronavirus test — if they are able to demonstrate a substantial downturn in their health and ability to work.
Steven Trompeter, 49, was unable to perform his job as an industrial mechanic after getting sick with COVID symptoms, including cough, fever, muscle aches and loss of taste and smell, in February 2020. He applied for disability in December 2020 and was approved six months later.
Trompeter, a Navy veteran who lives in Idaho Falls, Idaho, said he believed that the extensive medical records documenting his past health and his repeated visits to a Veterans Affairs medical clinic in 2020 helped show how sick he had become, with ongoing “brain fog” and other difficulties.
“I’ve heard nightmares where you have to get denied three times and then get a lawyer to go before a judge, and I didn’t have to do any of that,” he said. “I just had to wait.”
Tiggemann said a determination of whether people qualify for benefits has more to do with how their symptoms affect their ability to function than the exact diagnosis. So a positive COVID test, while helpful, might not be necessary if the other evidence clearly shows an inability to work, she said.
“No two cases are the same, each case is individual,” she said. “We look at doctor’s tests, medical records, past treatments and whether they have other conditions.”
Long COVID has proved similar to other diseases that can be difficult to diagnose, including myalgic encephalomyelitis (also known as chronic fatigue syndrome), fibromyalgia, rheumatoid arthritis and post-treatment Lyme disease syndrome — conditions that can also cause fatigue, memory issues and joint pain.
Patients with these diseases often find it difficult to qualify for disability benefits and get accurate, timely medical diagnoses. Studies from the Centers for Disease Control and Prevention and organizations that represent people with those conditions have shown that some patients can spend years or even more than a decade trying to determine what causes their illnesses.
Many medical schools do not offer enough training on these types of diseases, and research for them is underfunded, said Linda Tannenbaum, chief executive of the Open Medicine Foundation, a nonprofit that funds research into chronic complex diseases like fibromyalgia and long COVID. “Most patients cannot get disability benefits,” she said.
Dr. Stephen Martin, a physician and professor at the University of Massachusetts Medical School, said the complex nature of diagnosing long COVID required the coordination of various specialists who also have specific knowledge of the condition. Many are overbooked, he said, with wait lists of more than six months — especially for patients who do not have good health insurance.
“This really hits us in our Achilles’ heel of health care,” Martin said. “The American health care system really isn’t set up to do this at scale.”
Sandee Babb, 54, of Grand Rapids, Michigan, has seen nearly two dozen doctors over the past year trying to figure out what is causing a range of symptoms, including cardiac arrhythmia, a chronic cough, shortness of breath and joint pain, which have kept her from returning to her job as a teacher and librarian. She says she gets breathless just trying to put her socks on, and cannot walk up a flight of stairs without stopping to rest.
“The brain fog is crazy bad,” Babb said. “I’ve been in the shower and stared at my shampoo bottle and couldn’t figure out how to open it.”
She could not get a coronavirus test when she first got sick in March 2020, early in the pandemic. But a September progress note from her doctor said her symptoms “could be consistent with long-haul type syndrome.”
Since getting sick, Babb has lost her home and all of her retirement savings. She is working as a live-in caretaker for a quadriplegic friend in part to keep a roof over her head.
After months documenting her condition, she submitted her unemployment application in August and is not sure when she will get an answer. “If it doesn’t come through, then I’m really stuck,” she said. “Where do I go from here?”
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