Confronting Long COVID

Published: April 7, 2023

Beginning with the first surges of 2020, the COVID-19 pandemic continues to reshape the way health care providers think about disease management and treatment. And now, after years of overwhelming hospital utilization, mortality, and provider burnout, an additional challenge is confounding clinicians and patients: long COVID.

The medical community is still searching for consensus on what precisely long COVID entails and how to identify and diagnose it in patients with preexisting pulmonary disease. But one thing is clear: There is a need for innovative and targeted solutions to reach vulnerable patients who continue to experience symptoms long after their initial infection subsides.

Read more about just a few of the many clinicians taking on long COVID from the ground up—and opportunities for anyone to make a difference in this years-long fight.

Understanding the current state of long COVID

Although many have declared that we are now in a post-pandemic state, new variants are likely to continue to drive high infection rates. Compounding the steady volume of new infections is the high number of patients experiencing long COVID symptoms like fatigue, brain fog, difficulty breathing, and depression after even mild illness.

“Nothing is over,” said Jennifer Possick, MD, Medical Director of the Post-COVID Recovery Program at the Yale Medicine Winchester Center for Lung Disease. “Certainly, we’ve seen the volume of post-COVID cases ebb and flow in tandem with the number of acute infections. Our sense is that vaccines did make a difference, if for no other reason than we are seeing fewer patients with critical illness, prolonged hospitalizations, and post-ICU syndrome or post-ARDS complications. But our referral volume continues to be pretty steady.”

According to the Centers for Disease Control and Prevention, in November 2022, 13.9% to 14.9% (95% CI) of adults surveyed who previously had COVID-19 experienced persistent symptoms for 3 months or longer after initial infection. Patients from communities facing structural and social inequities experience even higher rates of long COVID; for example, among Hispanic/Latino people, in November 2022, the reported incidence of long COVID, as defined above, was 16.1% to 20.2% (Centers for Disease Control and Prevention, National Center for Health Statistics. Accessed November 30, 2022).

Long COVID disparities also disproportionately impact rural populations. For example, in Alaska and West Virginia—states known to have large rural populations and unique geographic features that prevent many from easily accessing health care—the incidence of long COVID is reported to be as high as 20.4% and 20.6%, respectively (Centers for Disease Control and Prevention, National Center for Health Statistics. Accessed November 30, 2022).

Taking care to the patient

The challenge of caring for patients in remote or otherwise underserved areas is not new. But the growing need to administer vaccines, treat emergent and severe cases of COVID-19, and reach an increasing population with long COVID symptoms has created an even greater demand for innovative ways to bring the clinician to the patient.

For one clinic, that means taking treatment—quite literally—to the streets.

According to U.S. News, Virginia houses five of the richest counties in the nation, including Arlington County, Fairfax County, Loudon County, and Falls Church, all located near Washington DC. Despite this, many other residents of the state continue to struggle with poor health care access and poverty.

Historic mistrust in the community also creates barriers to providing optimal care for a condition that has been largely politicized since the start.

“We come from a region where [many have] taken advantage of the community…so with the government coming out and saying, take this vaccine, there was a lot of mistrust there,” Dr. Tyson said. “But we tried to combat that by taking [our message] to the media. I used my connections to get on CBS Morning News to get vaccines for our miners. We went door to door, begging people to take the vaccine, and sometimes that started a conversation. You have to go the extra mile for your patient population, particularly if they're vulnerable.”

Tackling targeted care

Part of that extra effort includes coordinating specialist care for patients requiring testing or treatment that isn’t feasible in the Health Wagon’s mobile units. But the goal remains to provide as much care in-house as possible—and that’s where partnerships with other health care providers come into play.

One such partnership between the Health Wagon and the University of Virginia (UVA) helps ensure that UVA’s long COVID care is accessible to a much broader patient population—and that sick people who can only reach the mobile unit still receive necessary specialist services.

“Southwest Virginia, in addition to being a food desert, is also sort of a physician desert. There's just really not a lot of access to resources,” said Kyle Enfield, MD, Associate Professor of Medicine at the University of Virginia. So, after UVA launched a post-COVID ICU clinic that later expanded to a post-COVID clinic, Dr. Enfield and his colleagues knew they needed a way to expand their reach.

A large proportion of residents in the Appalachia region work in mining, contributing to a higher-than-average prevalence of exposure-related pulmonary disease.

The solution? Connect with patients remotely—with a little help from clinicians on the front lines.

“It is one way that we can extend the footprint we have to groups of patients that would otherwise not be able to ever see us,” said Dr. Enfield. “Because it's telemedicine, that puts a barrier in place because you have to have access to the internet, so that does cut off some communities. But that’s why you need a partner like the Health Wagon who can actually bring those things to patients.”

To ensure as much time can be taken with each patient as possible, clinicians at the Health Wagon coordinate scheduling, complete intake forms, take vitals, and perform any other pre-consultation tasks needed before Dr. Enfield and colleagues from UVA consult with the patient remotely.

Exploring the patient perspective

Reserving that time to ensure you understand the patient’s unique experience is an integral aspect of treating individuals with long COVID, said Dr. Possick and Dr. Enfield, because many have symptoms that are difficult to quantify or identify with typical testing.

“Some patients have been struggling with symptoms for 2 to 3 years, and some have undergone exhaustive testing. While objective evaluation is important, subjective measures are essential to capture the impact on a patient’s physical and psychosocial activity,” Dr. Possick said. “Listen to patients and legitimize their experience. Their narratives are so important and help identify obstacles and gaps in health systems.”

“Many patients don't feel like they've been heard until they've seen us,” said Dr. Enfield. “If they have been able to see a primary care doctor, often that primary care doctor has only 15 to 20 minutes to talk with them. And it's hard in that 15 to 20 minutes to get to the heart of some of these issues.”

The impact of long COVID-19 symptoms extends well beyond the physical. The uncertainty of the disease and its treatment creates an even more challenging situation for patients struggling with lasting effects.

“The majority of the patients we see were leading extremely busy, active lives prior to their infection,” Dr. Possick said. “Many struggle with guilt that they have let down loved ones or colleagues because of the way they’ve had to modify their lives to manage symptoms. They are frustrated that there are so many unanswered questions—why this happens, how long it will last, how to fix it.”

Advocating for the individual

Preexisting disparities in the health system exacerbate the challenges in diagnosing long COVID, creating even more significant gaps for those who traditionally struggle to access care or feel heard by clinicians—particularly when their symptoms are not clearly identifiable or well understood.

“We found that our patients were facing discrimination,” Dr. Possick said. “Apart from patients with end-organ damage, like post-COVID ILD or myocarditis for example, most patients have largely normal objective testing. Patients, particularly women and people of color, were having their symptoms dismissed by physicians, employers, and family.”

But understanding the actual effect of symptoms on patients’ lives enables clinicians to better mitigate some of these harmful effects by allowing them to advocate on behalf of individuals who may need assistance with keeping a job, managing the process of going on long-term disability, or coordinating specialist care, said Dr. Enfield.

“Part of that advocacy is really trying to help when I can by talking to people about what we see in [patients with] post-COVID, so they have a better understanding of why their previously hardworking employee may have stopped working, for example,” he said. “So one of the things that I end up doing is talking to insurance companies. We've actually been able to keep a couple of people in their jobs at a different functional status as they get better. But if we don't find a way to allow providers to do that kind of work, there's not going to be people who can do that.”

Clinicians also have a role to play in creating large-scale, lasting change—and keeping the COVID conversation going.

“I think people are tired of talking about COVID, and they want it to go away, but it hasn't gone away, and we have ramifications that we still have to deal with,” Dr. Enfield said. “People need to talk to their representatives about bills that are going into the Senate this year for funding to do long COVID work and specifically to do the research that's necessary to figure out how to treat these patients better.”

But regardless of how clinicians push for improved care for patients with long COVID, Dr. Tyson summed it up best: As individuals advocating for change, “We’re a small force, but we’re a mighty force."