In 2020, overwhelmed hospitals and excessive fatalities defined a world grappling with the COVID-19 pandemic. Simultaneously, a new challenge emerged: A growing population struggled to recover fully from COVID-19.
Patients coined the term “long COVID” to describe their prolonged health challenges that can linger months after initial coronavirus infection. Eventually, long-COVID clinics, programs focused on treating patients with long COVID, opened around the country, including at Washington University School of Medicine in St. Louis.
Now, physicians and researchers at the School of Medicine are working with community partners to identify needs and better deliver services to medically vulnerable and underserved communities in the St. Louis metropolitan region and rural Missouri. The Washington University health-care team was awarded a five-year grant totaling $4.5 million from the U.S. Department of Health and Human Services, through the Agency for Healthcare Research and Quality. Eight other teams around the country also were awarded the grant.
“Under-resourced communities in St. Louis and rural Missouri have been disproportionately affected by COVID-19 and have not always been able to access the care they need and deserve for long COVID,” said Abby L. Cheng, MD, a Washington University physical medicine and rehabilitation physician and lead principal investigator on the grant. “A communitywide partnership, involving patients, trusted community organizations, primary care teams, medical subspecialists and experts from other health-care disciplines, aims to increase available resources for these underserved populations.
“This grant will allow us to create solutions together.”
Community partners include: the St. Louis Integrated Health Network, St. Louis Regional Health Commission and four St. Louis Federal Qualified Health Centers (FQHCs). The latter are outpatient clinics that qualify for reimbursement under Medicare and Medicaid and offer comprehensive, high-quality primary care and preventive services regardless of patients’ ability to pay.
Washington University’s long-COVID clinic opened in October 2020. Given the overwhelming need and multifaceted nature of the illness, a multidisciplinary group of clinicians across the School of Medicine care for long-COVID patients. The clinic, overseen by the school’s Division of Infectious Diseases, evaluates and refers patients to various services, including the Living Well Center, a lifestyle-medicine-based center within the Department of Orthopaedic Surgery.
This initiative aims to increase and improve long-COVID care in St. Louis and in Missouri rural communities. It will support primary care physicians in the region as they diagnose and manage long-COVID-related symptoms in their patients, in part by improving communication and the referral process between primary care teams and specialists at Washington University. The expectation is that such collaborations will reduce wait times and boost access to care.
“Our community partners have taught us that equipping primary care teams — teams that already take care of underserved patients on a daily basis — with practical clinical tools and long-COVID-treatment option updates is a more effective, equitable strategy than solely increasing patient access to our single clinic,” explained Cheng, an assistant professor in the Department of Orthopaedic Surgery. She added that many patients prefer to receive care within their trusted “medical home,” such as at an FQHC, rather than to navigate the university’s system if it is unfamiliar to them.
The narratives long-COVID patients often share have a common theme: the persistent struggle to obtain care — like that of a north St. Louis resident who, unable to work remotely, contracted COVID-19 early in the pandemic, Cheng recalled. The patient developed long COVID, which included breathing issues, brain fog and fatigue. The illness led to the loss of her job and, consequently, the loss of her health insurance.
“We cannot help patients with their medical needs if we don’t address the social piece first,” said Cheng, who also has a master’s degree in population health sciences.
The funding will support two case managers to help patients access social resources and manage complex paperwork, including health insurance and financial assistance forms, which can be daunting even when not experiencing debilitating symptoms.
Stigma and skepticism surrounding long COVID also have hindered patient care. The Washington University team will partner with the Missouri Primary Care Association to disseminate knowledge, raise awareness and improve communication and collaboration in areas that can be harder to reach, including rural Missouri communities with limited wireless and broadband access.
“Long COVID is real and ubiquitous,” said Cheng. “We have heard varying degrees of awareness regarding what long COVID can look like, what causes it and how to treat it. Because primary care physicians understand patients from their whole medical perspective, they are in a key position to recognize long-COVID symptoms. They are also extremely busy. We want to support primary care teams with the tools that they tell us they need to provide best practice long-COVID care.”
The team is collaborating with Mirna Becevic, PhD, an assistant professor of dermatology at the University of Missouri School of Medicine in Columbia, Mo. Becevic works with a network of hundreds of primary care physicians through a virtual teleconference platform, the Extension for Community Healthcare Outcomes (ECHO). The multidisciplinary clinical group at Washington University will develop and deliver long-COVID educational sessions to this already established physician network. Such sessions aim to spread awareness of current best practices and to encourage primary care clinicians, who care for rural and underserved patients in St. Louis and elsewhere in Missouri, to discuss challenging patient cases.
Other Washington University co-principal investigators on the grant include behavioral scientist Amy McQueen, PhD, and infectious diseases physician Jonas Marschall, MD, professors of medicine. A multidisciplinary group of long-COVID clinicians is supporting the project, including key players Gayathri Krishnan, MD, an assistant professor of medicine and director of the long-COVID clinic, and Devyani Hunt, MD, a professor of orthopedic surgery and medical director of the Living Well Center.