By Brenda Goodman
The Centers for Disease Control and Prevention (CDC) are finalizing new guidelines to help doctors diagnose and manage long COVID or post-acute sequelae of SARS-CoV-2 infection.
In a one-day congressional hearing on Thursday, John Brooks, MD, a medical epidemiologist with the CDC's Division of HIV/AIDS Prevention, testified that the guidelines were going through the approval process at the agency, but would be released soon.
"They should be released very soon," Brooks said.
The guidelines, which were developed in collaboration with newly established COVID clinics and patient advocacy groups, will "illustrate how to diagnose and begin to piece together what we know about managing" the complex condition.
For many doctors and patients struggling to understand symptoms that persist for months after the initial viral infection, guidelines can't come soon enough.
The director of the National Institutes of Health, Francis Collins, MD, PhD, who also testified at the hearing, estimated that up to three million people could be left with chronic health problems even after mild COVID infections.
"I cannot overstate the seriousness of this problem for the health of our nation," he said.
Collins said his estimate was based on studies showing that approximately 10% of people who contract COVID-19 could be affected by this, and whose "long-term course is uncertain," he said. So far, more than 32 million Americans are known to have been infected with the novel coronavirus.
"We need to make sure we wrap them in our arms and provide them with answers and care," said Congresswoman Anna Eshoo, a California Democrat who chairs the Health Subcommittee.
Jennifer Possick, MD, who directs the post-COVID recovery program at Yale New Haven Hospital in Connecticut, testified that the tide of patients she and her colleagues were seeing was overwhelming.
“We are a well-resourced program at an academic medical center, but we are overwhelmed by the need in our community. This year, we have seen more patients with post-COVID-19 conditions in our clinic alone than new cases of asthma and COPD combined,” he said. “The magnitude of the challenge is overwhelming.”
Possick estimated that there are "more than 60" clinics in the United States that have begun treating patients with long COVID, but said they are grassroots efforts and all very different from each other.
"Those who had the resources, the time, and were able to take the initiative and forge relationships because most of them are multidisciplinary, did so."
Patients testify
Several representatives shared personal stories of loved ones or employees who remained ill months after a COVID diagnosis.
Congresswoman Ann Kuster of New Hampshire spoke about her 34-year-old niece, a member of the U.S. Ski Team, who had COVID just over a year ago and "is still struggling with everything, even the simplest activities of daily life," she said. "She has to choose between taking a shower or making dinner. I'm so proud of her for hanging in there."
Long-COVID patients invited to testify by the subcommittee described months of disability that left them with high medical bills and no ability to work to pay them.
“Now I’m a poor, Black, disabled woman living with long-term COVID,” said Chimere Smith, who said she had been a school teacher in Baltimore. “Saying it out loud doesn’t make it any easier to accept.”
She said COVID had affected her ability to think clearly and caused debilitating fatigue that prevented her from working. She said she lost her vision for nearly five months because doctors misdiagnosed a cataract caused by prolonged COVID as dry eye.
"If I didn't have a loving family, today I would be speaking to you from my car, the only property I now own."
Smith said that long-term COVID clinics, which are mostly located within academic medical centers, would not be accessible to all long-term carriers, who are disproportionately women of color. She has started a clinic, based at her church, to help other patients in her community.
“No one wants to hear that COVID has decimated my life or the lives of other Black women in less than a year,” Smith said. “We’ve just been waiting and hoping for compassionate doctors and politicians who will acknowledge us.”