Public health experts warn that long COVID is the next health emergency. While there’s no definitive count of long-haulers in the United States, a study by the Centers for Disease Control and Prevention (CDC) found that two-thirds of non-hospitalized COVID-19 patients returned to their doctors seeking relief from symptoms up to six months after contracting the virus.* Numbers are even higher for those hospitalized during their illness. 

“So many people have gotten sick that even if only a small fraction have a persistent disability or medical problems, that’s still a lot of people in the U.S. and globally,” said Dr. Jesse Goodman, professor of medicine and infectious diseases at Georgetown University. Now those affected are seeking more government help.

Grassroots efforts 

Karyn Bishof was a healthy 30-year-old firefighter paramedic when she was diagnosed with COVID-19 in March of 2020. She had a moderate case and wasn’t hospitalized. More than a year later, she now suffers from symptoms so debilitating that she is unable to work. Some of these symptoms include severe headaches, inadequate sleep (about 20-25 hours of sleep per week) and feet and legs that swell and turn purple.

Bishof, a single mother who now spends most of her time in bed, started the COVID-19 Longhauler Advocacy Project to provide support, education, and advocacy for long-haulers like her, hard-working people whose lives were turned upside down and who are now just scraping by.

“If you’re out of work, people are losing their homes, they’re losing their cars, they’re falling behind on bills and credit cards,” she said. “Changing the qualifications for…programs like food stamps or like Medicaid, allowing these people to obtain medical coverage and obtain at least the basic needs to provide for them and their families during this interim time is imperative.”

The government responds

Long COVID, sometimes called long-hauler syndrome, is receiving much more attention now than it did a year ago, although researchers and health professionals are still far from understanding it. In response to the urgent need for this understanding, the National Institutes of Health has launched a four-year, $1.15 billion research initiative to determine long COVID’s causes and discern possible treatments. 

In addition, Congressman Don Beyer of Virginia has proposed a bipartisan bill that would create a patient registry where long-haulers could voluntarily share their symptoms, treatments, and outcomes. The legislation would also provide funding for both public and provider education concerning long COVID.   

“Getting lots of dialogue and a sense of community with other people who suffer from long COVID can give people, first of all, a sense that they’re not crazy and a sense of hope and a sense of how the disease unfolds and what other people do to get better,” Beyer said. “As we develop this much larger database of long COVID symptoms, it gives us a much better policy argument to extend unemployment benefits to the people that have long COVID.” 

*KXXV/Scripps Media Inc. (2021, May 27). COVID-19 Long-Haulers Seek More Help from the Government. https://www.kxxv.com/covid-19-long-haulers-seek-more-help-from-government

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.