Inside a Long COVID Clinic’s Fight to Meet Crushing Patient Needs

Janna Friedly was thrilled, hopeful — and relieved — by the email that had landed in her inbox: After years of fighting an uphill battle to treat patients with long COVID, her Seattle clinic, one of the first and longest-running facilities in the US, was finally getting a much-needed financial boost from the US Department of Health and Human Services.

The multimillion-dollar grant, which came through in September, was going to help Friedly and her colleagues at the University of Washington’s Post-COVID Rehabilitation and Recovery Care at Harborview Medical Center meet some of the crushing demands of long COVID care.

“This entire year has been really filled with patients that have been trying to get access to the clinic for a year. And they’re still struggling,” said Friedly, MD, MPH, chair of the Department of Rehabilitation Medicine at the University of Washington School of Medicine and executive director at Harborview.

The tremendous demand and backlog had prompted the clinic in January 2023 to severely limit referrals to King County and the university. It was a hard decision that meant the rest of Washington, Wyoming, Alaska, Montana and Idaho — the five-state “WWAMI” region the clinic served — lost access to critical post-COVID healthcare.

At Harborview, there is now hope. The grant money will allow Friedly and her colleagues to make meaningful headway on their ambitious goals. But they are also realistic about the formidable task ahead.

Their circumstances are hardly unique. Clinics across the country are facing daunting challenges — amid dire patient needs, insufficient funding from state and federal health agencies has led to significant hurdles in patient care, especially for vulnerable and underserved communities, according to interviews and surveys with more than a dozen long COVID clinics, doctors, advocates, and patients. At the same time, a lack of training and education on long COVID within the broader medical community is hurting patients.

The grant announcement of a million dollars a year for up to 5 years per clinic — awarded to nine established multidisciplinary centers across the US through the Agency for Healthcare Research and Quality (AHRQ) of HHS — provides considerable relief.

But how far can $5 million stretch, given that long COVID is so complex, the needs of patients are so great, and the resources clinics have to manage them are so limited?

A Struggle to Help the Living

Nearly 4 years ago, Washington was at the epicenter of the first known US COVID case when an infected patient was identified in Snohomish County, less than 2 hours from Seattle. (Research later suggests the virus had been present long before it was first identified.)

In spring 2020, Julie Hodapp, MD, co-medical director of the Harborview clinic, was the first physician at UW to see patients recovering from severe COVID-19 following their discharge from intensive care. The clinic operated on minimal resources, with no guidebook on treatment strategies and a steep learning curve.

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