For Many Long COVID Patients, Qualifying for Disability Is Half the Battle

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A photo illustration of a person lying on a couch with hands over face. Above is a medical scene with a phone that says 'hold.'
Chris Pham, like scores of other people suffering from long COVID, hasn't been able to work for years, and has had to continuously fight with his insurance company to receive disability payments.  (Illustration by Anna Vignet/KQED)

Chris Pham contracted COVID-19 at the onset of the pandemic, in March 2020, and just couldn’t kick it.

“I was two weeks in, and the first time that I realized something was really wrong was when I decided to take a run,” said the now-35-year-old, who had been living in the Bay Area in good health and was training for a triathlon. “I was feeling a little bit better. … But after mile 1, I can remember really thinking, ‘Wow, there’s something that’s totally wrong with my body.’ And I broke into a cold sweat and I just couldn’t run anymore.”

Pham said his doctors, who at that point still knew very little about the virus, struggled to explain and diagnose his condition, which is now clearly understood to be what’s known as long COVID. “My doctors didn’t have any data really to base a diagnosis off of,” he said. “So, yeah, I was given the runaround or not really believed. And that was a scary, scary thing in and of itself.”

Pham said he generally learned how to manage his symptoms, but was often overwhelmed with paralyzing fatigue. He eventually tried to return to work full-time, as the head of sales of a Bay Area start-up, but found it nearly impossible to get through the day.

“I was passing out in the middle of the day after one or two meetings and it would cause and trigger my long COVID symptoms,” he said. “On calls, there was extreme fatigue and then this pain, like heavy sinking pain. Just like someone attached a 50-pound anchor to your face and let it drop to the bottom of the ocean.”

Pham had to take medical leave, and was ultimately laid off. But after his initial disability payments petered out, he struggled to secure the long-term disability benefits he needed to pay for basic living expenses and medical care.

Fast-forward more than three years: Pham still suffers from debilitating symptoms stemming from his initial infection — among the estimated millions of long COVID patients in the U.S. — and says applying for and receiving the payments has been a constant struggle.

“The process was extremely difficult to receive the funds, even though it was approved. The disability company would often come back and say, ‘It needs a review.’ And this happened every single month,” Pham said of his initial efforts to apply for long-term disability, noting that his insurance company often required him to do additional testing to prove his eligibility. “So I had no certainty on how to plan. I was basically chasing down my benefits the whole time.”

A young Asian man in a gray T-shirt rests on a brown leather couch with his eyes closed.
Chris Pham rests on the couch at his parents’ house in Arizona, where he now lives. (Courtesy Chris Pham)

Pham’s insurance company eventually terminated his long-term benefits, and with no source of income, he was forced to move back in with his parents in Arizona.

“If I didn’t have the support of my family, I’d be out on the streets,” he said. “[Insurers] are willing to let all the folks with long COVID who are currently suffering go without the benefits that are rightly owed to them.”

His insurance company, Guardian, did not return KQED’s request for comment about his case.

A big part of the problem for patients: There’s no single definition of long COVID and no singular test to determine whether someone has it, making it easier for insurance companies to deny claims.

“I would urge the CDC and the World Health Organization [to] encourage a clinical diagnosis of long COVID,” said David Putrino, a physical therapist at Mount Sinai Health System in New York, who has worked with thousands of long COVID patients over the last three years.

“[T]he payers and the people denying benefits to people with long COVID always say the same thing: ‘Oh, you don’t have enough evidence. We don’t have an objective test to prove that you’re sick,’” he said. “Please let us stop asking sick people to prove to us that they’re sick.”

Pham spent months fighting with Guardian to reinstate his long-term disability payments, and finally won his appeal in January.

Cassie Springer Ayeni, Pham’s attorney who helped wage his protracted legal challenge, says securing such benefits can be a lifesaver for people with long COVID.

A middle-aged white woman with glasses, wearing a business jacket, holds a large stack of papers.
Cassie Springer Ayeni, a disability attorney in San Leandro who works with many long COVID patients, shows a thick stack of her client’s disability claims, on June 5, 2023.

“These benefits typically do last through age 67 for people who are affected by long COVID or any other disabling condition,” she said, noting that half of her new clients suffer from long COVID. “That’s why they’re so valuable — because this is potentially income for somebody who might not be able to ever return to the workforce.”

Springer Ayeni says such uncertainty leaves many people with long COVID in both a physical and financial bind.

“People take loans and people take loans from family. And because of the cost of living in the Bay Area, a lot of my clients wind up selling their house, moving somewhere else,” she said. “I’ve had two clients just in the last year have to give up living in the Bay Area because of their disabilities, because they can’t live off of an unreliable source of income.”

The true economic cost of long COVID in the United States likely won’t be fully realized for years, if ever, particularly because the U.S. has done a poor overall job of tracking the condition, said Katie Bach, senior fellow at the Brookings Institution.

“My best estimate is that we have millions of full-time-equivalent workers not working and out of the labor force due to long COVID. So that’s somewhere between $100 billion and $230 billion a year in lost wages,” she said. “This is not the first post-viral illness that we have seen in the U.S. We’ve just never seen an outbreak of this scale.”

But from an insurer’s perspective, long COVID poses a number of major issues, says Linda Bergthold, a health policy consultant and researcher. She says one of the biggest issues is that there have been no diagnostic codes for long COVID. Those codes, which doctors have to denote when requesting coverage for their patients, are a key part of the claims process. And because there are so many symptoms associated with the condition — from fatigue to heart issues — some of the codes don’t necessarily cover the health problems that a long COVID patient might be experiencing.

Additionally, she said, insurance companies have a notorious history — one far predating COVID — of denying treatment claims they do not deem a “medical necessity.” That vague benchmark has proved particularly detrimental to long COVID patients seeking new treatments that have not yet been scientifically proven — and that insurance companies often consider unnecessary.

Although Chris Pham won his appeal for disability benefits, he says he still struggles on a day-to-day basis.

“I don’t have the ability to provide for myself,” he said. “I don’t [even] have the ability to do the dishes.”