How data gaps contribute to financial challenges for people with Long COVID

Long COVID symptoms place “significant activity limitations” on about one-quarter of patients, according to data from the Census and CDC’s Household Pulse Survey.

This week, I had a story published at Kaiser Health News (KHN) about barriers that people with Long COVID are facing as they apply for disability benefits, focusing on programs offered by the federal Social Security Administration. For me, working on this story highlighted the consequences of the U.S.’s poor data collection on Long COVID.

The article shares stories from a couple of individual patients who are unable to work due to their Long COVID symptoms, but can’t access the support they need. Here’s how the story starts, focusing on Brooklyn mom Josephine Cabrera Taveras:

When Josephine Cabrera Taveras was infected with covid-19 in spring 2020, she didn’t anticipate that the virus would knock her out of work for two years and put her family at risk for eviction.

Taveras, a mother of two in Brooklyn, New York, said her bout with long covid has meant dealing with debilitating symptoms, ranging from breathing difficulties to arthritis, that have prevented her from returning to her job as a nanny. Unable to work — and without access to Social Security Disability Insurance or other government help — Taveras and her family face a looming pile of bills.

“We are in the midst of possibly losing our apartment because we’re behind on rent,” said Taveras, 32. Her application for Social Security disability assistance, submitted last fall, was rejected, but she is appealing.

Like many others with long covid, Taveras has fallen through the cracks of a system that was time-consuming and difficult to navigate even before the covid pandemic. People are facing years-long wait times, insufficient legal support, and a lack of clear guidance on how to prove they are disabled — compounded by the challenges of a medical system that does not have a uniform process for diagnosing long covid, according to health experts and disability attorneys.

Estimates of how many people might be in situations similar to Taveras vary widely. I cite a couple of differing estimates in the story: one report from the Brookings Institution suggests between two and four million people may be out of work due to Long COVID, while another from the National Bureau of Economic Research suggests the number is closer to 500,000.

The CDC and Census’ Household Pulse Survey reports about 14% of all U.S. adults have experienced Long COVID symptoms, and about one in four adults who currently have Long COVID are experiencing “significant activity limitations” due to their symptoms. But the Social Security Administration itself said that it’s only identified 40,000 disability claims that “include indication of a COVID infection at some point,” in a comment for my story.

Why do these estimates vary so much? It goes back to the beginning of the pandemic, when PCR tests were not available to many people who likely had COVID-19 and early long-haulers were dismissed by their doctors. As we approach three years with COVID-19, there’s still no clear process for diagnosing Long COVID—much less a comprehensive system for identifying and tracking patients. (Many patients also might not yet identify as disabled, but will start looking for government support in the coming years, advocates pointed out to me.)

Right now, individual long-haulers lack standards or guidance for the medical paperwork they need to access programs like social security disability. And at a broader level, we lack clear estimates of how many people with Long COVID need these programs. The Household Pulse Survey has been a useful step towards such estimates in recent months, but more detailed data are needed to actually tackle the employment crisis that Long COVID presents.

Even so, we know enough to say that this is a crisis. For the story, I talked to Katie Bach, a senior fellow at the Brookings Institution and author of the report cited above. She told me that, while researchers disagree on the scale of Long COVID’s impact on employment, even the lowest estimates are reason for concern.

“Even if the bottom end of my range is overstated by 100%, we’re still losing $50 billion a year in wages,” she said. “I don’t think anyone who looks seriously at Long COVID would say this is not a significant problem for the U.S.”

I hope to do more reporting on this problem; see last week’s post about my new project at MuckRock for more details. Also, the KHN story is freely available to republish, for any other news outlets that might be interested in sharing it!

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