Clinical Care for Long Covid patients

What’s going wrong and what to do instead

Long Covid clinics are not working for patients. Instead of the interdisciplinary structure of clinics that we know work for people living with complex chronic conditions, many Long Covid Clinics work as switchboards, busily connecting patients with specialist after specialist. Patients are not getting better. Instead, they are getting more exhausted by the hospital visits, gaslighting, and physical pain and exhaustion required to seek solutions. This isn’t a revelation: conventional medicine has long failed patients living with complex chronic conditions; most people live with more than one. This is particularly tricky for people with infection-associated chronic conditions (IACC) like Long Covid that are hard to diagnose and treat. Yet, there are good models for doing so that should emulated and we discuss why.

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Why American Medicine Fails Long Covid Patients

The biomedical model does not provide a robust enough framework for addressing IACC. Very few people living with Long Covid describe a supportive clinical experience through diagnosis, treatment, and recovery. Long Covid is tricky because it’s difficult to clearly delineate what stems from Long Covid and what is pre-existing. Many clinicians find it’s hard to disentangle what’s from the infection and what is further dysregulation of a more established diagnosis. This matters mostly because of the way our medical system is structured.

The inequity in the American health system impedes care for people living with IACC in immeasurable ways. While patients need to know they are believed, they cannot heal well without health insurance in the American system. We need public funding for Long Covid Clinics to assist patients to overcome financial barriers to care, such as health insurance. Despite critiques, the VA has good clinical models to draw from that provide interdisciplinary medical homes. Others argue that Long Covid clinics should be run as research hubs.

However, it’s not just money but also the culture of medicine that’s impeding people’s care. People are more likely to be dismissed, or not ask for help from a physician, because they do not feel they are being taken seriously or they do not feel safe in medical spaces. This is particularly true among people of color; Black and Latinx Americans report more Long Covid in population studies but remain underrepresented in medical and medical settings. People are less likely to feel understood or taken seriously when their background is very different from their physician. Therefore, it’s important to cultivate safe spaces for people living with IACC that do not exhaust or overwhelm.

Long Covid Clinics have been presented as a solution. However, our research and practice suggest that these clinics are failing patients because of the way they are structured as switch boards. Long Covid clinics are set up to help patients manage their specialty care, which may include more than two dozen doctors. This exhausts patients because they have to reserve energy simply for the trip to the hospital. These clinics, therefore, provide access to needed specialist care but provides no meaningful care coordination across specialties.

What people need are holistic healers who can sit, listen, and spend time coming up with plans for navigating a new normal. This involves not only training clinicians about IACCs and matching IACC patients with clinicians who are knowledgeable and experienced caring for them. We need to learn from the expertise of physicians treating patients living with IACCs before the pandemic; there is no need to start from scratch.

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What we Need

Long Covid Clinics must function to care for patients on their own terms. This means that issues like safe housing, transportation, access to healthy foods, and social support must be considered insurable treatments. Recognizing patient knowledge and multiple pathways for healing is crucial in Long Covid care. Clinicians must consider what resources patients have at their disposal, from medical or scientific training to patient advocacy groups and access to other types of healers. A common problem is conventional medicine practitioners dismissing these other sources of knowledge; instead, a more respectful dialogue is crucial for the patient and provider to work together to identify problems and solutions.

We also need to recognize provider unfamiliarity with Long Covid and IACCs generally. Lack of knowledge can shape and bias future clinical encounters by writing misrepresentations into charts and referrals that shape symptom interpretations, including erroneous diagnosis. Many patients, particularly women, are given a diagnosis of Functional Neurological Disorder, for example, that sets back their care months, if not years, particularly when their condition is associated with a virus or bacterial infection. This is complicated more by the lack of a biological test, or sign, for IACC diagnosis. Moreover, clinical care cannot be standardized because IACCs manifest differently across patients.

Long Covid patients need clinical care that brings together an integrative team in one place. The optimal clinical context for a Long Covid patient would involve knowledgeable providers, including specialists, who can move in and out of a clinical room during an elongated session for a Long Covid patient. This would mean that the Long Covid patient would need to travel to the clinic or hospital fewer times. It would also require a team or collaborative care approach focused on the unique social, psychological, and physical needs of the patient. Alternatively, Long Covid patients would benefit from in house visits so that they can save their energy for healing.

Long Covid clinics also need holistic and integrative clinicians who can work across biological and health systems. This may require practitioners that are trained to implement holistic approaches for evaluating a patient and coordinating multidisciplinary care for people with Long Covid, as opposed to conventional medical subspecialists who are so narrowly focused on a certain part of the body.

Finally, disability accommodations are essential for Long Covid patients and this remains an enormous hurdle. The American public have the responsibility to make sure people with Long Covid have substantial financial support while they are out of work so they can rest and recover. No Long Covid patient can be left unhoused, hungry, afraid, and alone due to illness. Unfortunately, our research and practice suggest that this has not only been the case but is getting worse for those who have now been sick for nearly four years.

Dr Alba Azola, MD, is a clinician and assistant professor at Johns Hopkins University Medical School.

Dr Emily Mendenhall, PhD, MPH, is a medical anthropologist. Guggenheim Fellow, and Professor at Georgetown University.