Another Struggle for Long Covid Patients: Disability Benefits

Since she tested affirmative for the coronavirus successful April 2020, Josie Cabrera Taveras has recovered herself sleeping for up to 15 hours a day, stopping successful market store aisles to drawback her breath, lapsing successful and retired of consciousness and incapable to instrumentality to her occupation arsenic a nanny.

She believes that she is 1 of thousands, perchance millions, of Americans who whitethorn person a information known arsenic “long Covid.” The Biden medication has said radical with the information could suffice for national disablement protections and benefits, which tin see wellness care, lodging and unemployment benefits.

But similar galore others who whitethorn person agelong Covid, Ms. Taveras, 31, has had a hard clip proving it.

Two encephalon M.R.I.s, respective bosom ultrasounds, dozens of lung X-rays, 2 tummy endoscopies, 1 colonoscopy and aggregate CT scans person each provided the aforesaid results: Everything looks normal. “It’s thing doctors can’t explicate yet, what’s happening to me,” Ms. Taveras said.

With nary nonstop aesculapian grounds of her condition, she has been turned down for disablement sum twice. Even a enactment from a prestigious post-Covid session successful the Mount Sinai infirmary system, attesting that Ms. Taveras “continues to acquisition regular symptoms and is presently incapable to work,” was not enough.

In July, astatine a White House lawsuit celebrating the Americans with Disabilities Act, President Biden promised “to marque definite Americans with agelong Covid who person a disablement person entree to the rights and resources that are owed nether the disablement law.”

But with nary wide agreed-on method of diagnosing the ailment, those who judge they person agelong Covid are uncovering it hard to suffice nether a strategy that is unfamiliar and already tricky to navigate.

Studies person shown that a significant number of Covid-19 patients proceed to seek treatment for a wide scope of aesculapian conditions galore months aft a diagnosis. The American Academy of Physical Medicine and Rehabilitation estimates that three to 10 cardinal Americans whitethorn person agelong Covid.

Yet galore of those seeking benefits cannot nutrient a affirmative coronavirus test, which were successful abbreviated proviso astatine the opening of the pandemic. And laboratory results and scans often amusement thing antithetic for those continuing to acquisition symptoms.

Since December 2020, the Social Security Administration has determined that astir 16,000 applicants were capable to supply aesculapian grounds supporting Covid-19 arsenic 1 of their impairments, according to Nicole Tiggemann, a spokeswoman for the agency, which was not flagging Covid cases earlier that.

But she would not accidental however galore of those 16,000 applicants had been approved for benefits, oregon however galore radical claiming agelong Covid arsenic a information had been denied. Many cases are astir apt inactive pending; hold times for a determination tin agelong for 5 months oregon more.

The pandemic forced the Social Security Administration to mostly unopen down in-person services, and immoderate experts foretell a flood of applicants with agelong Covid successful the coming year, connected apical of the agency’s already-strained workload.

“Addressing the disablement backlog is 1 of our apical priorities,” Ms. Tiggemann said via email, acknowledging that the pandemic had accrued hold times. Mr. Biden has called for an accrued $1.3 cardinal for the agency’s fund for the 2022 fiscal year, but his connection is portion of the existent negotiations successful Congress, and it is unclear whether it volition pass.

About 8.1 cardinal disabled workers and 1.4 cardinal of their household workers person disablement benefits, which average astir $1,280 a month. To qualify, applicants indispensable show a disablement that substantially limits their quality to enactment and has lasted, oregon volition last, for astatine slightest a year. Typically, the Social Security Administration uses aesculapian assessments oregon wellness records to find whether idiosyncratic qualifies, and a immense bulk of those approved for disablement enactment connected it for life.

Getting approved tin beryllium difficult. Between 2009 and 2018, the Social Security Administration denied 66 percent of applications connected average.

But immoderate radical with agelong Covid symptoms person had occurrence — adjacent without a affirmative coronavirus trial — if they are capable to show a important downturn successful their wellness and quality to work.

Steven Trompeter, 49, was incapable to execute his occupation arsenic an concern mechanic aft getting sick with Covid symptoms, including cough, fever, musculus aches and nonaccomplishment of sensation and smell, successful February 2020. He applied for disablement successful December 2020 and was approved six months later.

Mr. Trompeter, a Navy seasoned who lives successful Idaho Falls, Idaho, said helium believed that the extended aesculapian records documenting his past wellness and his repeated visits to a Veterans Affairs aesculapian session successful 2020 helped amusement however sick helium had become, with ongoing “brain fog” and different difficulties.

“I’ve heard nightmares wherever you person to get denied 3 times and past get a lawyer to spell earlier a judge, and I didn’t person to bash immoderate of that,” helium said. “I conscionable had to wait.”

Ms. Tiggemann said a determination of whether radical suffice for benefits has much to bash with however their symptoms impact their quality to relation than the nonstop diagnosis. So a affirmative Covid test, portion helpful, mightiness not beryllium indispensable if the different grounds intelligibly shows an inability to work, she said.

“No 2 cases are the same, each lawsuit is individual,” she said. “We look astatine doctor’s tests, aesculapian records, past treatments and whether they person different conditions.”

Long Covid has proved akin to different diseases that tin beryllium hard to diagnose, including myalgic encephalomyelitis (also known arsenic chronic fatigue syndrome), fibromyalgia, rheumatoid arthritis and post-treatment Lyme illness syndrome — conditions that tin besides origin fatigue, representation issues and associated pain.

Patients with these diseases often find it hard to suffice for disablement benefits and get accurate, timely aesculapian diagnoses. Studies from the Centers for Disease Control and Prevention and organizations that correspond radical with those conditions person shown that immoderate patients tin walk years oregon adjacent much than a decennary trying to find what causes their illnesses.

Many aesculapian schools bash not connection capable grooming connected these types of diseases, and probe for them is underfunded, said Linda Tannenbaum, main enforcement of the Open Medicine Foundation, a nonprofit that funds probe into chronic analyzable diseases similar fibromyalgia and agelong Covid. “Most patients cannot get disablement benefits,” she said.

Dr. Stephen Martin, a doc and prof astatine the University of Massachusetts Medical School, said the analyzable quality of diagnosing agelong Covid required the coordination of assorted specialists who besides person circumstantial cognition of the condition. Many are overbooked, helium said, with hold lists of much than six months — particularly for patients who bash not person bully wellness insurance.

“This truly hits america successful our Achilles’ bottommost of wellness care,” Dr. Martin said. “The American wellness attraction strategy truly isn’t acceptable up to bash this astatine scale.”

Sandee Babb, 54, of Grand Rapids, Mich., has seen astir 2 twelve doctors implicit the past twelvemonth trying to fig retired what is causing a scope of symptoms, including cardiac arrhythmia, a chronic cough, shortness of enactment and associated pain, which person kept her from returning to her occupation arsenic a teacher and librarian. She says she gets breathless conscionable trying to enactment her socks on, and cannot locomotion up a formation of stairs without stopping to rest.

“The encephalon fog is brainsick bad,” Ms. Babb said. “I’ve been successful the ablution and stared astatine my shampoo vessel and couldn’t fig retired however to unfastened it.”

She could not get a coronavirus trial erstwhile she archetypal got sick successful March 2020, aboriginal successful the pandemic. But a September advancement enactment from her doc said her symptoms “could beryllium accordant with long-haul benignant syndrome.”

Since getting sick, Ms. Babb has mislaid her location and each of her status savings. She is moving arsenic a live-in caretaker for a quadriplegic person successful portion to support a extortion implicit her head.

After months documenting her condition, she submitted her unemployment exertion successful August and is not definite erstwhile she volition get an answer. “If it doesn’t travel through, past I’m truly stuck,” she said. “Where bash I spell from here?”