Editor’s Note: Find the latest news and guidance on COVID-19 in Medscape Coronavirus Resource Center.
The Centers for Disease Control and Prevention (CDC) is finalizing new guidelines to help physicians diagnose and manage long-term COVID or post-acute sequelae of SARS-CoV2 infection.
On Thursday, in a one-day congressional hearing, John Brooks, MD, medical epidemiologist for the CDC division HIV/ AIDS prevention, stated that the guidelines were going through the authorization process at the agency, but would be close.
“They should be out very soon,” Brooks said.
The guidelines, which were developed in collaboration with long-term COVID clinics and patient advocacy groups, will “illustrate how to diagnose and begin to gather what we know about the management,” of the complex disease, he said. .
For many doctors and patients struggling to understand the symptoms that persist for months after the initial viral infection, the guidelines may not arrive soon enough.
The director of the National Institutes of Health, Francis Collins, a doctor of medicine, who also testified at the hearing, estimated that up to three million people could be left with chronic health problems after even mild infections due to COVID.
“I cannot exaggerate the seriousness of this problem for the health of our nation,” he said.
Collins said his estimate was based on studies showing that about 10 percent of people receiving COVID could be affected by it and that its “long-term course is uncertain,” he said. To date, more than 32 million Americans are known to have been infected with the new coronavirus.
“We need to make sure we put our arms around them and give them answers and attention,” said Congresswoman Anna Eshoo, a California Democrat who chairs the health subcommittee.
Jennifer Possick, MD, who runs the post-COVID recovery program at Yale New Haven Hospital in Connecticut, said the wave of patients seeing her and her colleagues was overwhelming.
“We are a program with many resources in an academic medical center, but we are inundated by the need of our community. This year, in our clinic we have seen more patients with postcovid-19 conditions than new cases of asthma i COPD combined, “he said.” The magnitude of the challenge is daunting. “
Possick estimated that there are “more than 60” clinics in the United States that have begun treating patients with long-term COVID, but said they are basic efforts and are very different from each other.
“Whoever had the resources, had time, [and] he was able to take the initiative and forge relationships because most are multidisciplinary, so he did, ”he said.
Several representatives shared touching personal stories of loved ones or staff who remained ill months after the diagnosis of COVID.
Congresswoman Ann Kuster of New Hampshire spoke of her 34-year-old niece, a member of the American ski team, who had COVID just over a year ago and “continues to struggle with everything, even all with the simplest activities of daily living, ”she said. “She has to choose between showering or dinner. I’m very proud of her for hanging out.”
Patients with long COVIDs invited to testify by the subcommittee described months of disability that left them with high medical bills and no work capacity to pay them.
“I’m a poor, black-disabled woman now who lives with a long COVID,” said Chimere Smith, who said she had been a school teacher in Baltimore. “Saying it out loud doesn’t make it any easier[y] to accept. “
He said COVID had affected his ability to think clearly and had caused debilitating fatigue, which prevented him from working. He said he lost his sight for almost 5 months because doctors misdiagnosed a cataract caused by a long COVID like dry eye.
“If I didn’t have a loving family, I would [would] be talking to you today [from] my car, the only property I have now. “
Smith said long-term COVID clinics, which are mostly found in academic medical centers, would not be accessible to all long-haul carriers, who are disproportionately colored women. He has set up a clinic based in his church to help other patients in his community.
“No one wants to hear that the long COVID has decimated my life or that of other black women in less than a year,” Smith said. “We just waited and waited for compassionate doctors and politicians to recognize us.”