As the pandemic continues, we turned to Dr. Deborah Gold for perspective on what might come next for those who recover from the virus but still face lingering effects. The former hospital epidemiologist and chief of Infectious Diseases at Kaiser San Francisco outlined just how challenging the task of caring for these patients might be.
You’re an infectious disease expert. What might the so-called long-haulers, as the media colloquially have called them, face over time if the effects of COVID-19 end up becoming a chronic condition?
Taking a quick step back, the “long-hauler” term is one patients use themselves. The medical community, guided by the CDC, prefers ‘late sequelae’ or ‘long COVID’. Long-hauler is a trucking term and there’s a concern its use could undermine the seriousness of this phenomenon — and it is very serious.
The most common symptoms are joint pain, persistent cough, and cognitive issues like mental fogginess and insomnia. Other chronic symptoms include cardiac problems (even in young and healthy athletes), low grade fevers that linger for months, and debilitating fatigue.
If you experience prolonged symptoms four weeks or longer from the onset of COVID, you fall into that late sequelae category according to the most recent guidance from CDC.
Does this have any analogue with other existing chronic diseases?
Yes. Patients who present with late sequelae remind me of those with Chronic Fatigue Syndrome. When I was an ID fellow at the University of Washington, I did a study of patients with this condition because it was so poorly understood and so impactful to patients. The disease manifestations were incredibly protean — that’s very much what’s being seen with these COVID-19 patients. Their symptoms are all over the map, affecting many different organ systems.
But in the case of chronic fatigue syndrome, there was some level of initial skepticism on the part of the medical community. This is not the case for late sequelae patients. There’s been an endorsement of this phenomenon from the very beginning because the stories of patient experiences have been similar across the board. They were first described by clinics in France and Italy – and then by clinics in the US. The timelines and symptoms were so similar, it was impossible to regard them as anything but credible.
This sounds like a very significant problem we’re just now starting to address. Is that a fair take?
Yes. We don’t even have any idea of how many people are affected. There are so many unknowns about COVID late sequelae: What is the cause of the various symptoms? Why do some people develop them and others don’t? Are there ways to predict who will get late sequelae based on the clinical course and can symptoms be prevented? What’s the best way to treat them? How long will the symptoms last? At the moment, treatments are very fragmented and symptom-specific — for example, prescribing ibuprofen for joint pain or around-the-clock acetaminophen to suppress fevers.
Are there any promising studies currently underway?
Several. For example, Mt. Sinai Medical Center in New York City has a multi-disciplinary clinic that’s devoted to studying and treating late sequelae patients for years. It’s a comprehensive approach to trying to understand the different facets of the syndrome and includes lab studies, radiological imaging, and access to sub-specialists for their particular symptom areas, etc. The clinic includes a wide range of sub-specialists, from nephrologists, neurologists and pulmonary specialists to cardiologists, and endocrinologists.
Physical therapists, mental health professionals and social workers are also important members of the team. There are a number of other academic medical centers across the US that have recently started similar multidisciplinary clinics to study people with COVID late sequelae.
It sounds like there really needs to be a care team approach to this. Do you see that happening?
Ideally you would have a care team approach; you need to get sub-specialists onboard to figure out their particular piece of the puzzle. But we have a fractured healthcare system that will not support this approach today. Unless things develop differently, the burden will realistically fall on primary care and infectious disease specialists to try to provide care for these patients. That’s exactly what happened with chronic fatigue syndrome patients.
This could be a huge burden on the healthcare system. There are potentially millions of people globally who will be plagued by persistent symptoms so severe, they’ll require regular medical attention. Some might be unable to return to work full time (if at all!). They could suffer from debilitating conditions that might prevent them from living the kind of lives they led before.
How should payers figure into all this?
My feeling is this should be considered a chronic condition — and insurance companies will have to recognize it as such and cover it.
What gives you some hope?
There is growing concern and engagement by the NIH and CDC around the issue of late sequelae. That’s where support for long-term multidisciplinary studies will come from. If researchers can figure out how the virus and the immune response to it are causing problems, they can ultimately identify how to properly treat these patients or maybe even prevent the long term symptoms from developing.