Do clinicians really need to diagnose long COVID? We asked the experts

Researchers are working to produce generally agreed upon best diagnostic and treatment protocols for long COVID, which is a growing concern.

However, most of the symptoms long COVID patients experience already have diagnostic and treatment protocols.

For example, a patient may seek out care for a heart problem that may or may not have been caused by long COVID. The physicians already know the best way to treat it. The insurance companies will or will not cover that treatment depending on the benefits package.

This perhaps begs the question: Do clinicians really need to diagnose long COVID? Monica Gandhi, M.D., the assistant chief of the Division of HIV, Infectious Diseases and Global Medicine at UCSF/San Francisco General Hospital, told Fierce Healthcare via email that the conversation is a good one for the industry to have.

“If damage was caused by the virus (this really seems to only occur in severe disease; I don’t see how mild disease is causing longer symptoms), the damage is done, and one would treat the heart condition with the usual medications for the heart condition," she said. 

Gandhi, an internationally known expert who’s regularly quoted in consumer publications and scientific journals, noted that COVID-19 is an RNA virus, meaning people may get the virus, but it cannot actively replicate after the body has developed an immune response that kills it because human genetic material is DNA.

It’s not like HIV, which “can intercalate into the human chromosome,” because “it starts out as an RNA virus and then converts its genetic material into DNA (that is why it is a retrovirus) which incorporates into the human chromosome,” she said.

As such, HIV stays with patients forever, with physicians treating ongoing damage from the virus with antiretroviral therapy or HIV therapy, Gandhi said.

Gandhi has gained a reputation as being something of a contrarian, often bucking public and expert consensus about the pandemic. Of the experts Fierce Healthcare spoke with for this article, her opinion stands apart. Most think that it’s important—crucial, even—to find out exactly what long COVID is.

Adam Myers, M.D., the Blue Cross Blue Shield Association’s chief clinical transformation officer, told Fierce Healthcare in an email interview that “it is always best to diagnose a condition more accurately.”

“Even though many of the symptoms currently have existing processes to treat them regardless of cause; we may indeed one day find a common denominator from a pathophysiologic perspective for which the specificity of the etiology would be important,” Myers said. “For example, one could say a headache is a headache is a headache. When there were only a couple of treatment options like Tylenol, Aspirin, or Ibuprofen, knowing the etiology of the headache didn’t really matter.”

“Now we have a far greater understanding of headaches and classify them into different types and many of these now have very specific and successful targeted treatments,” he said.

Peter Kongstvedt, M.D., echoed the sentiment in an email interview.

“I agree that, currently, we treat what we can as we know how, but what if we find, for example, that long COVID is a type of autoimmune condition?” said Kongstvedt, a senior health policy faculty member in the Department of Health Administration and Policy at George Mason University. “Or that the virus somehow is able to perpetuate fragments of itself into certain types of human cells?”

“It is worth researching to find out because one never knows what that might lead to, even if we end up benefiting in the long run for other conditions more than from dealing with long COVID,” Kongstvedt said.

That said, conducting research on long COVID is only one part of the equation. Taking action based on that research is another matter, and should be done with care, said Richard G. Stefanacci, an adjunct professor at the Jefferson College of Population Health at Thomas Jefferson University, in an email.

He told Fierce Healthcare that “the bottom line is that a diagnosis would be helpful if it is solidly supported but harmful if unclear, leading to poorer clinical and financial outcomes than would occur without one.”

Stefanacci said the value of a long COVID diagnosis depends on who one asks. “Patients will want a diagnosis as an ‘easy’ way to label their condition,” he said. “[Healthcare providers] will want a diagnosis if it improves management and reimbursement.”

And for payers? They “may want a diagnosis especially if it’s tied to a [hierarchical condition category] score for reimbursement,” said Stefanacci.

Just how payers handle long COVID will depend a lot on what the Centers for Disease Control and Prevention (CDC) recommends, and remains an open question in the broader conversation around the disease. The agency said that about 6% of the U.S. population reports a long COVID diagnosis. The number of people who’ve had COVID-19 and then develop long COVID shrank from 19% in June 2022 to 11% last month, according to a recent analysis by the Kaiser Family Foundation.

“At this time, there is no laboratory test that can distinguish post-COVID conditions from other conditions,” CDC spokesperson Kate Grusich told Fierce Healthcare in an email. “CDC and other researchers continue to study post-COVID conditions to better understand who will develop it, how long it may take to recover, severity of symptoms and the impact on patient lives.”

Greater awareness of long COVID symptoms and conditions can help clinicians diagnose and treat patients, said Grusich. And though long COVID has no diagnosis as of yet, physicians and other providers should consider screening for symptoms associated with the condition, many of which can be managed by primary care providers, she said.

The CDC said that “your healthcare provider considers a diagnosis of post-COVID conditions based on your health history, including if you had a diagnosis of COVID-19 either by a positive test or by symptoms or exposure, as well as doing a health examination.”

Grusich said that “it’s also important to note that determining a cause for post-COVID conditions could help inform the development of specific treatments or management of conditions. For example, we may find that a disease like diabetes may require a different treatment or management recommendation if it is caused by SARS-CoV-2 infection.”

Todd Ellerin, M.D., the director of infectious diseases and chief of medicine at South Shore Hospital, in Weymouth, Mass., said he is similarly enthusiastic about the need for further research into how to better identify and diagnose long COVID.

“It’s true that we need to clarify the definition, which is tricky (think post-herpetic neuralgia) but many years from now we will have specific treatments once we learn more (e.g., the pathology may share similarities with chronic fatigue syndrome, but there are a number of clinical differences),” he told Fierce Healthcare.

For a similar example, he noted that many people who have stroke or heart bypass surgery suffer from depression afterward. “Isn’t it important to understand that the depression that happens after that is actually different than a primary depression? Different than postpartum depression?” he asked.

Ellerin acknowledged the overlapping symptoms between long COVID and other conditions.

“There are aspects of chronic fatigue syndrome and post-COVID syndrome that absolutely overlap,” he said. “But I’ll tell you, there are some very unique things about post-COVID that you don’t see in our patients with chronic fatigue syndrome.”

Treating the symptoms of long COVID is what doctors are doing now, but that’s not enough, said Ellerin. The condition can be debilitating, and Ellerin said he knows patients who have not been able to return to work full-time, or at all.

“Some can’t take care of their kids because of brain fog,” he said. “Some lawyers with post-COVID are standing in the supermarket trying to figure out how to buy toothpaste. And they were lawyers, and they’re super smart, but it takes them 15 minutes to find where the toothpaste is.”

“Ultimately, is it possible that there’s a common link between chronic fatigue and long COVID? I think there will be some similarities, but there may be some differences too,” Ellerin said. “That’s why we need research into it.”

Myers added that “if we never started classifying the different types of headaches, we would never have developed the specific treatments. This same thought process could be applied to diagnosing and treating long COVID.”

However, Gandhi said that “an RNA virus cannot stay with us, so long-term treatment with Paxlovid [or other drugs] would not be indicated.”

“So, as you say, treat the damage or the condition but what is the purpose of diagnosing it as long COVID if anti-SARS-CoV-2 therapy cannot help a nonreplicating and a nonactive virus?” she asked.