While many Washingtonians have moved on from the COVID-19 pandemic, it remains a lingering, increasingly acute concern for people throughout the region living with post-viral symptoms – and the providers working to meet their needs with limited resources, in a clinical landscape where few clinicians are well-educated on how to diagnose and treat chronic, poorly understood conditions like Long COVID.
In September 2023, the U.S. Department of Health and Human Services allocated major grant funding to 12 Long COVID clinics across the country. Among the institutions to receive funding was the University of Washington’s Long COVID clinic, dedicated to expanding access to Long COVID treatment across the state, often through training physicians to respond to it more appropriately. But the situation of Long COVID in the region remains complex, said UW’s Dr. Janna L. Friedly, with clinics scarce and under-funded even in cities like Seattle with otherwise robust medical infrastructure.“The reality is that health systems are not funding Long COVID clinics for the most part,” said Friedly, a professor and chair of UW’s Department of Rehabilitation Medicine and a physiatrist as well as the founder of UW’s Long COVID clinic.She and her colleagues are especially concerned about how this lack of medical infrastructure is impacting the patients the clinic can’t reach. “We know that some of the populations in Washington and the Wyoming region that are most vulnerable and probably have higher rates of Long COVID were not accessing our care in the clinic,” she said.Friedly’s clinic opened early in the COVID-19 pandemic and initially focused on treating patients who’d been hospitalized and needed support for ongoing symptoms. But Friedly quickly realized many patients who’d had less acute infections were also struggling with ongoing illness. And she could relate to them: Friedly herself had lingering symptoms after a COVID-19 infection, which meant that unlike many of her colleagues, she was intimately aware of the experience her patients were reporting.It’s an experience that can vary dramatically from person –to person: Among the 200 recognized symptoms linked to postviral COVID infections are brain fog, post-exertional malaise, upper respiratory and cardiac symptoms including heart palpitations, headaches, sleep disruptions, reproductive health conditions, joint pain and digestive symptoms.And like any chronic illness whose severity isn’t static, Long COVID requires ongoing, comprehensive, adaptive care. This is highly individualized and different for every patient, but can include managing specific symptoms, prescribing medications, and making lifestyle adjustments like “pacing,” which allows people to limit their fatigue by balancing activities with rest. Even in a city like Seattle, it can be challenging to obtain this specialized treatment due to the scarcity of clinics like UW’s, resulting in long wait times for patients to be seen and burnout among their providers.The federal funding, distributed to 12 clinics through the Agency for Healthcare Research and Quality, has been helpful, Friedly said. The grants, up to $1 million each, filled a major gap in care related to the COVID-19 pandemic. But more support is clearly needed to ensure broad access to care for patients, and it’s uncertain if the new presidential administration will provide that support.Part of the difficulty lies in a lack of clarity around Long COVID’s prevalence and underlying mechanisms. The number of people in Washington impacted by Long COVID is difficult to gauge: According to Dr. Eric Chow, chief of communicable disease epidemiology and immunization at Public Health – Seattle & King County, Long COVID is not what’s known as a “reportable condition,” which means case numbers aren’t communicated to public health officials, the norm for some illnesses, including HIV, measles and pertussis. Additionally, the loss of funding tied to the COVID pandemic has been a hurdle for hospital reporting.But some estimates are available. A paper published by the CDC journal Preventing Chronic Diseaseand co-authored by the Department of Health’s Arran Hamlet reported that in October 2023, 6.4% of adults in Washington state had post-COVID symptoms, defined as lingering symptoms such as cough and fatigue that hang on for months after the initial illness.At a symposium on Long COVID held by the Seattle Flu Alliance last year, Tao Kwan-Gett, chief science officer with the Department of Health, gave a presentation on the state’s health disparities specifically linked to Long COVID. Drawing on data from December 2023, Kwan-Gett said Long COVID was more prevalent in Central and Eastern Washington than in the Puget Sound region, possibly because of lower vaccination rates east of the Cascades.Friedly is concerned about reaching these patients in particular. “Our clinic sees primarily white women between the ages of 40 and 60 who were commercially insured,” she said, but that’s not representative of who gets Long COVID. A study from the National Institutes of Health found that Black and Hispanic Americans were disproportionately impacted by Long COVID.One possible solution is through giving primary care providers better tools and training for treating patients with Long COVID, a goal the clinic is currently pursuing through initiatives like rotations for medical residents and a symposium held in October for patients and providers.It’s a practical approach given that most people with Long COVID begin their efforts to find treatment by seeing primary care providers, few of whom are trained to treat Long COVID specifically. Often, said Friedly, this means clinicians will order unnecessary tests, and patients will cycle through a distressing carousel of specialists before getting meaningful treatment at a clinic like UW’s.She said she’d seen Long COVID patients in the course of seeking relief pay out-of-pocket for lab panels for unrelated diagnoses and costly alternative treatments not backed by science. “Because patients are really struggling and are desperate for treatment, they are seeking a lot of alternative treatments, and treatments that haven’t been well studied, and it’s hard for people to sort through what is potentially helpful, what’s potentially harmful, and people are spending a lot of money on unnecessary treatments or things that may or may not work,” she said.Giving primary care providers the tools to respond to Long COVID more effectively could disrupt this cycle, which frustrates both patients and providers, Friedly said. “The symptoms of Long COVID become so frustrating and debilitating that then they develop depression and anxiety about the medical condition, and then they become deconditioned because they can’t do any kind of activity, and that compounds things, or they have other medical issues that aren’t as well taken care of,” she said.To offset these disruptions in care, the UW clinic offers consultations with primary care physicians and is developing clinical guides and patient education materials around Long COVID. Later this year, the clinic will launch what Friedly calls a “mini-fellowship,” which will train and certify clinicians in Long COVID care.“That’s certainly not enough, and I think this will need to be incorporated into medical education at the medical school level and in residency training,” she said. “But that’s a start.”
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