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

Solarina Ho

November 17, 2023

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 guide book on treatment strategies and a steep learning curve.

It did not take long, however, for Hodapp and her colleagues to identify an entire population of nonhospitalized patients who experienced mild to moderate COVID and who were suffering from persistent symptoms long after their initial infection. Referrals exploded once they opened the clinic to that group as well.

The deluge of patients in the early days of the pandemic meant they "could not humanly, physically see all the referrals," according to Hodapp, a rehab medicine physician. The clinic quickly brought in colleagues from multiple specialties in medicine, with as many as 17 physicians joining the team at its peak. Some doctors transitioned back to their regular clinical practice; currently, nine doctors and a nurse see hundreds of old and new long COVID patients a month. More physicians are coming on board soon.

"Clinicians have felt quite a bit of burnout and stress trying to manage the volume of patient care needs," said Friedly.

And resources have always been limited.

"That's incredibly frustrating to us because we know that patients will do better when they have good access to mental health treatments, to the physical therapy, cognitive rehab, and that just isn't happening," she said prior to receiving the AHRQ grant.

To set up a clinic requires resources that involve not only doctors and nurses but also administrative and IT staffing and expertise, said Jonathan Whiteson, MD, with the American Academy of Physical Medicine Rehabilitation (AAPMR). Expenses are not always covered by hospital or healthcare systems, and even when funding is rerouted to a clinic, sustaining the operation takes further financing, added Whiteson, who is also an associate professor at New York University Grossman School of Medicine.

Despite the substantially reduced referral zone at Harborview, patients continue to pour in. Collectively, the clinic has handled thousands of cases since its inception. This past summer, the team was seeing roughly 150 new patients a month and up to 150 to 200 returning patients. The newest ones had been waiting since October 2022 for their first appointment in late June. Just weeks earlier, the World Health Organization had declared the end of the COVID-19 global health emergency. But there is no end for long COVID doctors.

"People want to move on from the pandemic. They're not putting the money or the very limited personnel that they have into these clinics," said Karyn Bishof, with the Long COVID Alliance and founder of the COVID-19 Longhauler Advocacy Project.

Fast forward to autumn, and the backlog at Harborview remains. The clinic's first-time patients have waited since December 2022 and January 2023 to be seen. What began as an unrelenting battle to save the dying is now a much quieter but still steadfast struggle to help the living.

Long COVID Is Not Going Away

While wait times have shortened in many parts of the US, especially in major urban centers where multiple clinics operate, doctors from across the country who were surveyed say they are still seeing plenty of patients with post COVID problems for the first time. These post-COVID conditions are characterized by a broad range of symptoms that linger or develop weeks and months after an acute infection. For some, the persistent symptoms may be inconvenient or irritating, but for others, they are debilitating and devastating, lasting months or possibly years.

Wastewater samples at the end of September showed that COVID-19 levels remained high in nearly two dozen states, according to WastewaterScan, which analyzes wastewater from municipal treatment plants across the US that serve more than 10,000 residents.

The latest CDC Household Pulse Survey, taken between October 18 and October 30, 2023, found that 9.5% of American adults previously infected with SARS-CoV-2 say they are currently experiencing long COVID. While this figure has fallen from nearly 15% a year ago, it still means millions of adult Americans are grappling with the aftereffects of COVID-19 right now. Among those currently dealing with the complex condition, nearly 30% say it has caused "significant activity limitations" — the highest since at least September 2022.

Some patients have been wrestling with symptoms for 2 or 3 years and are unable to work, enjoy their hobbies, or be active and spend quality time with family, said Jessica Bender, MD, an internal medicine physician and a co-medical director at the Harborview clinic.

"It's really hard to see your patient not get better," she said. The group recognizes the mental toll long COVID takes and that providing mental health support is an important component of their multidisciplinary approach.

Compounding the problems are patients with other health problems. They are often the worst hit. The healthcare system is not well designed for people with chronic conditions or those with multiple chronic problems, Friedly said. "This just shines a bright light on all of the inadequacies and gaps in our healthcare system."

Hope, Despair and Frustrating Challenges

On the nearly 189,000-member Facebook group Survivor Corp, which educates and connects survivors of COVID-19 and long COVID, the impact of the system's deficiencies is unmistakable. Many have seen numerous specialists. Some travel hours and cross state lines to seek help. One patient in Georgia waited 9 months to be seen at a clinic 350 miles away in Florida. The patient took a week off to make the trip, but it was "time and money wasted." The ordeal was "awful, especially when you feel like you're dying," the patient told WebMD via Facebook Messenger.

For patients lucky enough to access a multidisciplinary clinic, it can be lifesaving. One Survivor Corp member said her symptoms kept worsening, but the healthcare system in her area was unable to help. A referral to the "University of Cincinnati saved my life," she told WebMD via the group's Facebook page. "I know if I hadn't gone to the COVID clinic, I would've died."

Not everyone is so lucky, however. Hundreds of facilities across the US are described as long COVID clinics, but there is no consensus as to what that entails. They are often geographically out of reach for many Americans, and many appear unequipped to provide multidisciplinary services.

Sophia Naide of Washington, DC, said her post-COVID symptoms worsened after "extremely harmful" treatment that left her using a wheelchair and out of the workforce.

"In my experience, these clinics are hit or miss. Some of them genuinely offer expertise on post viral illness, while others peddle outdated and disproven treatments. Unfortunately, my experience was the latter," she wrote via email, saying her "trust in doctors has been shattered."

Barriers to access are not just about the type of services available, quality of care, wait times, or geography. Some patients were denied care because they could not produce a positive COVID test result, Bishof said, despite health agencies such as the CDC saying one is "not required to establish a diagnosis of Post-COVID Conditions."

There are legal constraints too. During the public health emergency, the UW clinic was able to provide telemedicine across state lines, explained Nicole Gentile, MD, PhD, another veteran with the Seattle clinic. This crucial service was cut after it was declared that the emergency had ended, even as doctors described telemedicine as a critical national issue and an invaluable means of reaching more patients in dire need of help.

With so many obstacles, many look elsewhere for answers.

The Harborview team's concerns and needs are echoed all over the US, particularly in underserved communities.

Some 2100 miles southeast of Seattle, in San Antonio, Texas, a lack of resources and access to specialty care remains a key concern, said Monica Verduzco-Gutierrez, MD, a professor and chair of the Department of Rehabilitation Medicine at the University of Texas Health Science Center at San Antonio. Her clinic, also a recipient of the AHRQ grant, was "busting at the seams" earlier this year. While wait times have since shortened considerably thanks to an expanded care team, doctors have their hands full balancing post COVID care with their already-busy pre-COVID specialties.

In New Mexico, Alisha Parada, MD, head of general internal medicine and geriatrics at the University of New Mexico's School of Medicine, has had similar experiences.

"Everybody goes about it in a different way because it's really dependent on resources. And we have very limited resources," said Parada, who has been working with long COVID patients since April 2020. "Just like primary care physicians and clinicians, we have a shortage of specialty physicians in our state."

One Clinic, $5 Million, and Lofty Goals

For Friedly and her team at Harborview, the grant will not only help shore up resources and expand access and care, but it will also allow clinics to learn from one another to develop and implement better models.

The importance of collaboration between clinics is highlighted by AAPMR's own PASC (post-acute sequelae of SARS-CoV-2) collaborative, which brings together experts and stakeholders from more than three dozen clinics. They share research, data, and experiences through lectures and open access documents online, said Whiteson. "It's been absolutely essential in the process of disseminating the information."

But $45 million spread over 5 years and nine clinics is a small sum considering the magnitude of the problem, experts say.

"With the high prevalence of long COVID, there's no way that we're going to be able to fully address long COVID with this, and there's clearly more funding that's needed to help," said Friedly, who is nonetheless optimistic her team will do as much as it can with the much needed cash infusion. "This definitely will go a long way and take us a lot further than we've been able to do."

Physicians and patients alike say there is an enormous knowledge gap among general practitioners on the subject. The AHRQ funding also aims to help repair that chasm.

"I definitely tend to hear that from my patients who are coming from more rural settings — that they're told it's all in their head," said Caitlin McAuley, DO, a family medicine physician with the COVID Recovery Clinic at Keck Medicine of the University of Southern California.

One way to ensure that the message and the lessons reach doctors is to incorporate them into medical schools and also make education on the subject a requirement for doctors to recertify their licenses, said Long COVID Alliance's Bishof, an EMS firefighter who was infected in March 2020 while working and who developed severe, long-term health problems.

"Every single provider in the United States is going to have a long COVID patient. So it's not just about educating those at long COVID or post-COVID centers. It's about educating the entire medical community as a whole," said Bishof. He noted that a "domino effect" can occur when there are backlogs and delays and the care itself is siloed.

At UW, a formal curriculum was developed and incorporated into the training for the global health fellowship in the Department of Family Medicine. "The reality is, as this becomes more of a chronic illness, just like diabetes or chronic fatigue syndrome, it will fall on the shoulders of primary care doctors for the vast majority of patients," said Bender.

In the meantime, Harborview and clinics like it aim to continue efforts to educate and help those suffering in what some have called the "silent" pandemic.

"It's a message to our patients that yes, we're still thinking of you," said Whiteson. "We will never stop thinking of you. We value your function, your quality of life, your day to day activities."


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