Rickie Andersen took a brief break from work in March 2020 after falling ill. Her cough, fever and chills were typical symptoms of COVID-19, but coronavirus tests were so rare that she was unable to obtain one to confirm the diagnosis.
After Andersen returned to her job as an information systems project manager in the San Francisco Bay Area, she struggled with profound fatigue, cognitive difficulties, and other crippling complaints. For six months, she tried to stay awake during meetings and complete basic chores that took much longer than before.
Finally, she decided to retain legal aid services in order to take advantage of the disability insurance protection offered as a benefit to employees. “I realized it wouldn’t be a short-term thing,” Andersen said.
Hundreds of thousands of people around the world experience what is known as the “long COVID” – a pattern of prolonged symptoms following an acute episode of the disease. Many have managed to keep working through accommodations like telecommuting, reducing hours and delegating responsibilities.
Others have found themselves unable to meet their professional obligations and make the difficult decision to stop working and apply for disability benefits. But as they continue with the application process, they discover a particular set of challenges.
Given the lack of testing in the first few months, many “long haul” like Andersen have no laboratory evidence of infection. Although antibody tests can provide such evidence, their accuracy varies. Additionally, many of the symptoms reported, including fatigue and cognitive impairment, are subjective and not clearly linked to specific organ damage.
“I realized it wouldn’t be a short-term thing.”
Rickie Andersen, technician from San Francisco affected by COVID-19
Beyond that, compiling a complete file for a disability claim and overcoming bureaucratic hurdles requires sustained brain power, which many long-distance patients can no longer muster. Barbara Comerford, a disability lawyer from New Jersey, said she had received dozens of inquiries from last fall from long-haul people seeking advice on filing a claim disability and often citing so-called “brain fog” as the main complaint.
“Most are people who call in and say, ‘I thought I could do it. I can not. My mind doesn’t work more than very brief periods of time, ”Comerford said. She made a presentation at the New Jersey State Bar Assn. in mid-February on how to develop evidence for such cases.
In the United States, nearly 30 million people have tested positive for the coronavirus, although many cases of infection are asymptomatic. It is not known what proportion might be affected by long-term illness. Scientific understanding of the phenomenon is in its infancy.
In January, The Lancet reported that about three-quarters of the more than 1,700 COVID-19 patients who had been hospitalized in Wuhan, China, reported at least one persistent symptom six months later. More recently, researchers at the University of Washington reported in JAMA Network Open that about 30% of the 177 patients who tested positive for the coronavirus still reported symptoms when questioned one to 10 months later.
The Social Security Administration offers long-term disability to U.S. workers who qualify for its strict criteria, but applicants are often turned down on the first try. A few states, including California and New York, offer short-term disability benefits, in some cases for up to one year.
Tens of millions of Americans also have private disability coverage, most often as part of their employee benefit programs.
The maximum currently available to a person through Social Security’s disability insurance program is just over $ 3,000 per month. A typical private long-term disability plan can cover 60% of a beneficiary’s base salary, with a much higher maximum amount.
Sandy Lewis, a researcher in the pharmaceutical industry, fell ill last March with what she suspected to be COVID-19. She recovered but relapsed in April and again in May.
Thanks to her employer insurance coverage, she received a short-term disability for November and December, but the insurer, Prudential Financial, denied her request for an extension. Shortly after, she was diagnosed with myalgic encephalomyelitis / chronic fatigue syndrome, or ME / CFS, a debilitating illness that can be triggered by viral infections.
Lewis, who lives outside of Philadelphia, plans to appeal Prudential’s rejection of the short-term extension and seek long-term disability. But the issue is unlikely to be resolved until the fall. The situation left her “devastated”, she said, and in serious financial distress.
“It has been such an arduous journey,” she said. “I have no income and I am sick, and I continue to need medical attention. I’m now able, at 49, to have to sell my house during a pandemic and move in with my family to stay afloat. “
In Lewis’s case, a Prudential reviewer noted that his symptoms were “subjective” and that there were “no physical exam results to correlate with ongoing functional limitations,” according to Cassie Springer Ayeni. , a disability lawyer from Oakland who also represents her. like Andersen.
Prudential would not comment on a specific case. Evan Scarponi, director of claims, said in a statement that “our collective understanding of COVID-19 and all associated long-term effects are still evolving” but that Prudential is “well versed in assessing the subjective and objective aspects of disability claims. “
Lawyers and lawyers on the ground expect the number of long-term disability claimants linked to COVID to increase this year. But it is still too early to detect such an increase, said a spokesperson for the American Council of Life Insurers, a trade association. Workers typically have to be unable to work for six months before they can qualify for long-term disability benefits, and applying itself can be a lengthy process.
Brian Vastag, a former Washington Post science and health reporter with ME / CFS, quit working in 2014 and then sued Prudential after denying his long-term disability claim. Insurance companies, he said, can easily find reasons to reject claims from claimants with chronic conditions characterized by symptoms such as fatigue and cognitive impairment.
“Insurance companies often say, ‘There is no objective evidence so we have nothing to back up your claim,’ said Vastag, who won her case against Prudential in 2018. “I’m worried about the long COVID patients who can no longer work. “
Applicants can appeal a rejection. If the insurer dismisses the appeal, the plaintiffs have the right to sue, as Vastag did. However, most of these cases fall under the Employees Retirement Income Security Act, 1974. Because this federal law requires a losing insurer to pay unpaid claims but does not provide for punitive or compensatory damages, critics argue that it prompts denial of coverage.
In the event of a dispute, the role of the court is to assess the already existing evidentiary record. This means that it is essential to present a strong case during the initial application or during the administrative appeal before any litigation begins, said Ayeni, the disability lawyer for Andersen and Lewis.
“This is the only shot to establish a case for the courts, to develop a full body of evidence,” she said.
However, the success of a disability case ultimately depends on documenting the inability to work, not on obtaining a specific diagnosis. To augment medical evidence, Ayeni often sends clients for neuropsychological tests, lung function surveys, and other specialized assessments. She also collects affidavits from family members, professional colleagues and friends to confirm patient testimonies.
In Andersen’s case, the strategy worked. Realizing the likely complexity of the application process, she quickly sought legal help. The insurer her employer contracted approved her for short-term benefits late last year and accepted her claim for long-term benefits in February.
“I knew this was all completely exhausting so it wasn’t something I thought I could do on my own,” Andersen said.
This story was produced by Kaiser Santé news, a national newsroom that covers health issues in depth and is one of the three major operational programs of the Kaiser Family Foundation. KHN is the editor of California Health Line, an editorially independent service of the California Healthcare Foundation.