(WASHINGTON) — Citing concerns about the lingering and sometimes debilitating long-term impacts of COVID-19 on the body — and observed inequities amongst minority patients suffering disproportionately from the virus — medical experts on “long COVID” issued the first guidance of its kind to diagnose and treat the mysterious illness.
Experts at the American Academy of Physical Medicine and Rehabilitation said they hope the guidance will help other doctors leverage their experience with patients to help address and mitigate their symptoms.
The guidance is indicative of widespread concern among medical experts that even months after resolving the initial infection, COVID is still causing serious health concerns amongst many Americans. At least 9 million long COVID patients are grappling with a range of symptoms, but experts said that number could be as high as 28 million people.
“When we recognized that long COVID, this new problem was developing due to the pandemic, we really felt an obligation to come forth and try to address it as best as we could,” Dr. Steven Flanagan, American Academy of Physical Medicine and Rehabilitation president-elect said at a reporter roundtable Tuesday ahead of the guidance release. “We recognized two years ago, this is a problem.”
A priority in addressing long COVID is to “recognize, assess and treat” the symptoms across a wide range of medical disciplines, including cardiovascular and pulmonary to neurologic, cognitive and gastrointestinal care, experts said.
Dr. Alba Azola, the lead author of the autonomic dysfunction guidance statement and member of the Johns Hopkins Post-Acute COVID-19 Team, said the medical community will need to tailor individual rehab protocols for each patient’s unique needs.
“As the pandemic has continued, more people of all ages have contracted COVID-19, and the number of children potentially impacted by long COVID has also increased,” Dr. Amanda Morrow, of Kennedy Krieger Institute’s Pediatric Post-COVID-19 Rehabilitation Clinic and lead author of the pediatric statement, said at the Tuesday media briefing.
The most common long COVID symptoms children experience are fatigue and attention problems, ongoing fever, headaches, sleep issues, and new mental health issues like anxiety and depression. Older, female children may be at an increased risk of developing long COVID, Morrow said.
Symptoms, management and rehabilitation for long COVID differ for children and adults, the experts said. Moreover, parsing out a long COVID diagnosis from other potential medical problems is not easy, since long COVID can involve so many of the body’s systems.
“Parents, caregivers, teachers and coaches are the frontline in observing changes and children that may be related to long COVID,” Morrow said.
“Children generally have fewer preexisting conditions than adults, so long COVID symptoms should be considered relative to the prior acute COVID illness,” Morrow said. “Young children and children with disabilities may have difficulty describing their symptoms, so it’s really important to try to tease that out during the medical interview.”
ABC News asked how the new guidance will ensure marginalized communities get the attention they need. Making information about long COVID more accessible is a first step, the experts said, but it can’t be the last.
“The Academy has been concerned about health equity, and we certainly want everybody to have access to the care that they need,” Flanagan said. Though there is currently legislation aimed at supporting resources in underserved communities, “there is more to be done, and we are not there yet.”
“This is a real significant issue,” Azola said. “I think it’s just the preponderance of Caucasian females in our cohorts of patients that are being treated at long COVID clinics is a reflection of the limited patient access to medical care in the United States, directly.”
“We know that there are people out there, probably debilitated, suffering from long COVID symptoms, that are not even aware about long COVID, or that there’s actually something that can be done to help them,” Azola said.
ABC News’ Anne Flaherty contributed to this report.
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