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Opportunity Area 5:

Structural Capacity

Insight

In their quest to access essential health care assistance and support services, people with Long COVID repeatedly hit barriers, big bills, and long wait times.

A scarcity of medical specialists equipped with knowledge relevant to Long COVID

means people with Long COVID often wait for months just to be seen. This is true across the medical field, as well as at Long COVID clinics.

An understaffed and underresourced Social Security Administration (SSA) means

that many people with Long COVID are waiting months to hear updates on their disability applications.

Some lawyers who provide assistance applying for SSDI are not taking Long COVID

cases, viewing the application process as too burdensome or lengthy. This leaves people with Long COVID with few options for legal assistance.

“It takes months and months to get an appointment after you have a referral. I don’t have a referral and I know it would take months to get that. It takes a long time to get into the doctor these days.”

—Matthew, retired business owner, grandfather, and person with Long COVID

“There’s the wait before you get in [to a center], because we see so many patients. That’s the first frustration. And from there, every break in the cadence causes frustration.”

—Albert, Long COVID clinic director

“In 2021 ... I paid about $19,000 out of pocket for medical bills the entire year. Most of it was on a clinic that helped me recover immensely but was not covered.”

—Maya, business consultant, daughter, and person with Long COVID

“After every surge, you see that there’s also a surge of patients who want to come see us [at the Long COVID clinic]. The reason is that you have more people being infected with COVID, so there are more people who are having these long-term effects. So the ebb and flow of patient volumes is very hard to deal with. How do you staff a practice where you’re going to have low interest or low volume months, and then for some reason, randomly high volume months?”

—Albert, Long COVID clinic director