ARI SHAPIRO, PRESIDENT:

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

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

CHRIS PHAM: I was going to do a short five mile run, and after the first mile, I remember really thinking, wow, there’s something wrong with my body. And I started in a cold sweat. I could no longer run.

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

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

MIZUGUCHI: Like so many working-age Americans with long-term COVID, Pham was forced to take time off from his job and, eventually, his employer let him go. After his short-term disability wore off, he filed for long-term disability benefits, and that’s where the problems started.

PHAM: The disability company came back often and said it needed an overhaul. And this happened every single month. So they would only approve the benefit one month at a time. So I wasn’t sure how to plan. You know, I was basically just chasing my benefits the whole time.

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

LINDA BERGTHOLD: It’s very frustrating for everyone. She’s frustrating for the patients, for the doctors. And insurance companies will be wary of that. They will say we won’t pay until we find out.

MIZUGUCHI: While there’s still a lot of uncertainty about long COVID, Dr. David Putrino of Mount Sinai in New York says it shouldn’t be an excuse for insurers to cut off patient benefits. Petrino is working with thousands of long-term COVID patients at his recovery clinic.

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

MIZUGUCHI: For Chris Pham, with no benefits coming 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 on the street, and they don’t care.

MIZUGUCHI: Pham’s attorney, Cassie Springer Ayeni, who specializes in disability claims, says her story isn’t unique.

CASSIE SPRINGER AYENI: People take loans and people take loans from family. Many of my clients end up selling their home and moving somewhere else. I’ve had two clients just in the last year who have had to give up living in the Bay Area because of their disabilities, because they can’t live on an unreliable source of income.

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

PHAM: It’s full of both inconsistencies, but also just poorly executed and designed. And whether it’s on purpose or just the way the system is, it will lead to many people feeling discouraged and not having the resources to get what is rightfully theirs.

MIZUGUCHI: While Pham is feeling lucky, so many others with long-term COVID across the country are still waiting for their pleas 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.

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