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Coronavirus patients enduring long-term symptoms are joining a campaign to lobby Congress on passing legislation that would provide paid family leave for all workers.

The grassroots, nonpartisan group COVID Survivors for Change is now working with other groups focused on chronic illnesses and disabilities in an effort led by the advocacy group Paid Leave for All, drawing attention to the growing number of Americans known as COVID-19 long-haulers because of the longevity of their conditions after contracting the coronavirus.

More than 230 COVID-19 survivors, including those who experienced long COVID-19, across 46 states have signed an open letter requesting Congress pass legislation providing paid family leave.

Chris Kocher, executive director of COVID Survivors for Change, said members will participate in virtual meetings with several Republican and Democratic lawmakers this week to tell their stories and promote paid leave. 

“People shouldn’t have to be making these choices and going without pay just to do the basic necessity of taking care of themselves during the middle of a global pandemic where every community all across the nation has been devastated,” he said. 

“This isn’t something that 20 years from now we’ll see the impact of,” he added. “This will make a real difference in people’s lives immediately.”

Dawn Huckelbridge, director of Paid Leave for All, said the campaign of 45 organizations plans to meet with about 20 lawmakers on both sides of the aisle.

On the Senate side, those meetings will include Sens. Bill Cassidy (R-La.), Dick Durbin (D-Ill.), Joe Manchin (D-W.Va.) and Shelley Moore Capito (R-W.Va.). Advocates also will meet with House lawmakers like Reps. Katie Porter (D-Calif.) and Brian Fitzpatrick (R-Pa.).

President Biden included paid leave in his $1.8 trillion American Families Plan, which would provide employees paid leave for up to three months to recover from COVID-19 and care for those experiencing long-term symptoms. But that spending plan, along with Biden’s broader $2.3 trillion infrastructure proposal, faces stiff GOP opposition.

There is some precedent for paid family leave. Last year, the federal government granted up to 10 days of emergency paid leave to workers through the Families First Coronavirus Response Act passed in March 2020. That provision, however, expired at the end of the year.

Brett Giroir, former assistant secretary for Health and Human Services, noted that people can develop long-haul COVID-19 if they are asymptomatic or mildly symptomatic but that “the more symptomatic you are, the higher chances you’re going to have a long-term issue.”

Giroir, who served during the Trump administration, is now a distinguished visiting executive at Leavitt Partners, which helped found the COVID Patient Recovery Alliance.

“The data are becoming pretty compelling that this is real,” Giroir said. “This is not made up in people’s heads. This is a real syndrome that affects people after COVID.”

Priya Duggal, a professor of epidemiology at the John Hopkins Bloomberg School of Public Health, said it’s estimated that 8 percent of individuals who had COVID-19, whether they were hospitalized or not, developed debilitating symptoms “where they feel that they can no longer function at the capacity” they did before.

“At the very least, I think that employers and the government need to be thinking about these issues,” she said. “How will we handle this? Because it’s not just a burden on the economy, but it’s also a burden on the health care system.”

A large study conducted by the nonprofit FAIR Health and released on Tuesday found that 23.2 percent of COVID-19 patients — amounting to more than 450,000 people — sought care for one or more post-COVID-19 symptoms at least 30 days after diagnosis.

Roisin Monroe said she had to stop working at her job at an insurance company in October after enduring long-haul COVID-19 symptoms like facial droop, headaches, inflammation, gastrointestinal symptoms, muscle aches, heart palpitations and neurological symptoms since her diagnosis in March 2020.

“I feel like we’ve been kind of left and forgotten about, and because there’s a lot of us long-haulers that are grocery store workers, that are working in hospitals and taking care of all the people that were brought down by this pandemic,” she said.

“And these poor people are in the same boat I am, struggling to hold on to their jobs,” she added.

Paid Leave for All hosted a rally on Wednesday promoting its campaign, with support from lawmakers like Rep. Rosa DeLauro (D-Conn.), who chairs the House Appropriations Committee, and Sen. Kirsten Gillibrand (D-N.Y.).

“The reality is that at some point, every worker will need time off to bring home a new child, recover from illness or surgery, care for a child or a spouse, mourn the death of a loved one or a parent,” Gillibrand said during the rally. “But right now, 4 in 5 private sector workers do not have access to paid leave.”

“We need to fundamentally change a system that has been failing women and families and workers for years,” Gillibrand said.


Published in The Hill