Long COVID patients face challenges accessing government support

Menia Smith of Norfolk, Virginia doesn’t know how much longer she’ll be able to stay in her home. Her mortgage forbearance period is up. Her lender has given her a month to come up with around $12,000 and long COVID-19 symptoms are preventing her from working the hours needed to cover the payments. Her hope is that the Social Security Administration will make a decision on her application for disability support soon, but 243 days after submitting her second application, she’s not optimistic.

Smith is not alone. As many as 4 million Americans are out of work or have reduced their hours because of long COVID symptoms. Those without private long-term disability insurance are turning to Social Security Disability Insurance (SSDI), the taxpayer-funded federal program, for assistance. But a system that has suffered from underinvestment is at capacity and long COVID SSDI applicants are waiting months for a decision that, when it comes, is often a rejection.

“People are waiting somewhere between six or 12 months, if not longer, to get their eligibility for SSDI,” said Andrew Wylam, president of Pandemic Patients, a long COVID advocacy group. “The Social Security Administration just isn’t quite staffed or funded enough to adjudicate those claims quickly.”

A diagnosis is not enough

In the 2019 financial year, the year before the pandemic hit, the average processing time for an SSDI or Social Security Income (SSI) application was 120 days. In November 2022, it was over 200 days and is still rising, leaving many patients out of work without a source of income.

When the decisions finally arrive, they are, more often than not, a rejection. Pandemic Patients has helped around 50 patients going through the application process since it was founded in 2021. None of the patients it has worked with has had their application approved so far.

The Biden Administration officially recognized long COVID as a disability in July 2021. The Social Security Administration, however, does not have a diagnostic code with clear-cut criteria that must be met to classify a patient as suffering from long COVID. Applications are assessed on functional limitations, not a diagnosis, requiring patients to gather extensive evidence to support their claims and complicating the assessment process.

“If you have diabetes, you know you have a condition that will qualify you for disability benefits,” said Wylam. With long COVID, “it's a much more nuanced process.”

Smith contracted COVID-19 in October 2020, and many of the symptoms never went away. She suffers from shortness of breath, chest pain, and brain fog and forgetfulness.

For Sandi Zack, an early intervention teacher from Marietta, Georgia, fatigue was the most debilitating symptom.

“The fatigue was like nothing I've ever felt. It wasn't just, I need to go take a nap. It was I can't move, I can't walk, I can't function, I couldn't think, I couldn't make decisions,” Zack said.

Without medical documentation to support their claim, patients cannot receive SSDI or disability insurance from private providers. Over the last two years, Zack has visited numerous specialists, including cardiologists, neurologists, rheumatologists and pulmonologists, to document her symptoms and strengthen her claim with a private long-term disability insurance firm.

“I have seen probably close to 75 providers at this point,” Zack said. Finding doctors willing to even acknowledge long COVID as a physical condition has been a challenge for her.

“I've walked into offices where these people don't know long COVID or they don't believe, or they don't understand, or they don't want to understand.”

Zack was repeatedly told she was fine or was prescribed anti-anxiety medication or anti-depressants. One doctor told her to “go home and take a nap."

Keeping more people in work could ease the burden on everyone

If employers were more accommodating of employees suffering from long COVID, it could take some of the strain off the Social Security Administration and better protect patients’ finances.

Creating more inclusive work environments was one of the successes of the pandemic. According to the Federal Reserve Bank of St. Louis, although the number of Americans living with a disability has risen by almost 8% since the beginning of the pandemic, the share of disabled people participating in the workforce has risen by around 13% as remote working arrangements have become more common.

But some employers are unwilling to adapt patients’ working arrangements to their health limitations.

When Zack told her employers she was struggling with long COVID, “no one wanted to hear it,” Zack said. A HR representative blamed her for contracting the virus and suggested she should have done more to avoid getting sick.

“It was pretty unpleasant,” she said.

When schools went back to in-person instruction, Zack asked to teach virtually to accommodate her fatigue, but the school district said no. She went on paid leave, “but it just came down to, when your time runs out, you have to quit or we’re firing you,” she said. Zack eventually resigned.

When Smith returned to her work as a pharmacy technician, her doctor advised her to limit her hours to three hours per week initially. While her company was accommodating, her co-workers were not.

Instead of showing empathy for her condition, supervisors expected more from her than others because she was only working an hour a day. Smith carried out her duties with an oxygen tank strapped to her back.  

The exceptionally high burden of proof on patients and long delays accessing SSDI have left Smith feeling let down by the system.

“It’s not fair. You’ve been taking money out of my paycheck since I’m 18. I’m 50 years-old now,” she said, “I’ve been paying into this system a long time,” she added. “If I left it up to them, I would be homeless and without healthcare right now.”