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For people with long COVID, getting long-term federal disability is a big challenge

ARI SHAPIRO, HOST:

People affected by long COVID have to endure more than just physical suffering. Many are also hurting economically. They've lost their jobs and now rely on disability checks to survive. And getting long-term disability approved for long COVID can be a major challenge for some patients. From member station KQED in San Francisco, Keith Mizuguchi reports.

KEITH MIZUGUCHI, BYLINE: Chris Pham, who's 35, is at home living with his parents in Arizona. The former head of sales is still feeling the effects of his COVID-19 infection. Pham contracted the virus back in March of 2020, right as the city of San Francisco was shutting down. He thought it would be something that came and went, but his symptoms kept getting worse.

CHRIS PHAM: I was going to go for a short five-mile run, and after mile one, I remember really thinking, wow, something is totally wrong with my body. And I broke into a cold sweat. I just couldn't run anymore.

MIZUGUCHI: Despite his condition, Pham tried to go back to work immediately.

PHAM: I found it almost impossible. I was passing out in the middle of the day after one or two meetings.

MIZUGUCHI: Like so many working-age Americans with long COVID, Pham was forced to take leave from his job, and eventually, his employer let him go. After his short-term disability ran out, he filed a claim for long-term disability benefits, and that's where the problems began.

PHAM: The disability company would often come back and say it needs review. And this happened every single month. So they would only approve the benefit one month at a time. So I had no certainty on how to plan. You know, I was basically just chasing down my benefits the whole time.

MIZUGUCHI: His insurer, Guardian, terminated his benefits last year. Guardian did not respond to numerous requests for comment. Consultant Linda Bergthold, who works with employers to develop health care benefit programs, says part of the problem is that insurers don't have a definitive definition of long COVID, and there are no treatments that have been approved for long COVID patients.

LINDA BERGTHOLD: It's very frustrating for everybody. It's frustrating for patients, for doctors. And insurance companies will be conservative about it. They will say, we're not paying until we figure this out.

MIZUGUCHI: While there's still a great deal of uncertainty about long COVID, Dr. David Putrino with Mount Sinai in New York says that shouldn't be an excuse for insurers to end benefits for patients. Petrino is working with thousands of long COVID patients at his recovery clinic.

DAVID PUTRINO: These individuals need to be held accountable for withdrawing support from people who deserve benefits and deserve adequate levels of care. Please let us stop asking sick people to prove to us that they're sick.

MIZUGUCHI: For Chris Pham, without any benefits coming in and not being able to work, he was forced to move back in with his parents.

PHAM: You know, if I didn't have the support of my family, I'd be out on the streets, and they don't care.

MIZUGUCHI: Pham's attorney, Cassie Springer Ayeni, who specializes in disability claims, says his story is not unique.

CASSIE SPRINGER AYENI: People take loans, and people take loans from family. A lot of my clients wind up selling their house, moving somewhere else. 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.

MIZUGUCHI: Pham appealed the decision, and after being without benefits for seven months, his appeal was finally granted, meaning his long-term benefits were restored earlier this year. But he's still not satisfied with his experience navigating the insurance system.

PHAM: It's rife with both inconsistencies but also just really poorly executed and designed. And whether that's on purpose or just how the system is, it'll lead to a lot of people feeling discouraged and not having the resources to get what is rightfully theirs.

MIZUGUCHI: While Pham feels fortunate, so many others with long COVID across the country are still waiting for their appeals to be heard or resolved and wondering if they'll ever get the help they need. For NPR News, I'm Keith Mizuguchi in San Francisco.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

Keith Mizuguchi