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Experts detail the toll of long COVID in congressional testimony: ‘The patients keep coming’

Even those who had COVID and fully recovered are not safe from disabling long term symptoms, a patient advocate testified.
Disposable face mask on floor
Recent data suggests that around 16 million Americans may currently have long COVID, one expert testified.Calvin Chan Wai Meng / Getty Images

Long COVID is disabling millions of Americans and putting stress on both the health care system and the economy, experts said Tuesday in a House Subcommittee hearing on the poorly understood illness.

Their testimony underscored the enormity of this mostly unrecognized epidemic.

Explaining the patient toll, Dr. Monica Verduzco-Gutierrez, a specialist in brain injury and rehabilitation medicine at UT Health San Antonio, talked about the nearly 500 patients she’s seen, each fighting their own individual battle against the condition: “patients who have developed autoimmune disease, who can’t stand up for two minutes without their heart rate going through the roof, who have fatigue 100 times worse than when they had cancer, marathoners who can’t run, healthcare providers can’t physically or cognitively return to the bedside.

“And the patients keep coming. Some are waiting upwards of six months to be seen,” she said. “When the day of their appointment arrives, some do not make it. Not because they got better, but because they got worse. They lost their job and healthcare insurance, or they are so disabled they can’t get out of bed. This is a public health crisis.”

Even though the condition is affecting millions of Americans, “there is not a way for me as a physician to diagnose long COVID based on physical exam, blood work, an EKG or a scan,” Verduzco-Gutierrez said.

Among the most disabling symptoms of long COVID is cognitive damage, Verduzco-Gutierrez said. “Many of my patients have overlapping symptoms with those seen after brain disease: dizziness, memory loss, concentration problems, insomnia, headaches, tremors, [dysfunction of the autonomic nervous system], anxiety, PTSD and suicidal thoughts,” she added.

Unfortunately the public has many misunderstandings about long COVID, said Hannah Davis, co-founder of the Patient-Led Research Collaborative. Davis got COVID in March of 2020 and has been disabled by its symptoms ever since. “Before I got sick I worked in artificial intelligence, but I haven’t been able to return to that kind of work,” she said.

What many do not understand is that 76% of those who develop long COVID had a mild initial case of COVID, Davis said. Even those who had COVID and fully recovered are not safe from disabling long term symptoms. Some people develop long COVID when they are reinfected with SARS-CoV-2, she added.

There is not a way for me as a physician to diagnose long COVID based on physical exam, blood work, an EKG or a scan.

Dr. Monica Verduzco-Gutierrez

Women and minorities appear to be hardest hit by long COVID, said the Subcommittee’s chairman, Rep. James E. Clyburn. Recent data from the Centers for Disease Control and Prevention (CDC) suggest “that women are more likely to be diagnosed with long COVID than men and that Black and Hispanic Americans are more likely to experience long COVID than white Americans,” he added.

That coupled with bias among health care workers can exacerbate the situation, said Cynthia Adinig, a business woman and stay-at-home mom who has long COVID. Adinig described her last traumatizing visit to the emergency room in 2020.

“Being wheelchair dependent at the time, I was threatened with arrest by the emergency room hospital staff while seeking medical help during an episode of dangerously low oxygen and high heart rate. I had learned a few weeks prior that this same hospital had tested me for illicit drug use without my knowledge three times prior, in response to the long COVID symptoms I presented with.”

Even worse, “despite my drug tests repeatedly coming back negative for drug use, I was slated to be given Narcan for withdrawal symptoms during one of my admissions for dehydration and starvation brought upon by long COVID,” Adinig said.

Long COVID is having an even broader impact than the effects seen by the healthcare system and individual patients, said Katie Bach, a nonresident senior fellow at the Brookings Institute.

Recent data suggests that around 16 million Americans may currently have long COVID, Bach said. A longitudinal study by the Federal Reserve Bank of Minneapolis “found that 24.1% of people who’ve had COVID experienced symptoms for three months or more, which is how the study defined long COVID,” Bach said.

By Bach’s estimates, four million full-time workers may now have a reduced ability to work. “To put this in perspective, consider the economic cost of just the lost earnings of long haulers,” Bach said. “Four million people out of work translates into $230 billion a year in lost earnings. If the long COVID population increases by just 10 percent each year, by 2030 that will be half a trillion dollars each year.”

The federal government has been responding by, among other actions, specifying that long COVID qualifies as a disability under the Americans with Disabilities Act, Clyburn said. “This is an important step in ensuring that long COVID is appropriately treated by employers as the disabling event it can often be and providing workers the protections workers the protections they need so they do not have to choose between a paycheck and their health.”