Scarred by Covid-19, These Survivors and Victims’ Families Aim to Become a Political Force

WASHINGTON — In Facebook groups, text chains and after-work Zoom calls, survivors of Covid-19 and loved ones of those who died from it are organizing into a vast grass-roots lobbying force that is bumping up against the divisive politics that helped turn the pandemic into a national tragedy.

With names like Covid Survivors for Change, groups born of grief and a need for emotional support are turning to advocacy, writing newspaper essays and training members to lobby for things like mental health and disability benefits; paid sick leave; research on Covid “long haulers”; a commission to investigate the pandemic and a national holiday to honor its victims.

As President Biden tries to shepherd the country into a post-pandemic future, these groups are saying, “Not so fast.” Scores of survivors and family members are planning to descend on Washington next week for “Covid Victims’ Families and Survivors Lobby Days” — a three-day event with speakers, art installations and meetings on Capitol Hill — and, they hope, at the White House.

Patient advocacy is not new in Washington, where groups like the American Cancer Society have perfected the art of lobbying for research funding and improvements to care. But not since the early days of the H.I.V./AIDS epidemic has an illness been so colored by politics, and the new Covid activists are navigating challenging terrain.

Others are learning as they go, including Karyn Bishof, 31, a former firefighter and single mother in Boca Raton, Fla., who founded the Covid-19 Longhauler Advocacy Project, and Pamela Addison, 36, a reading teacher from Waldwick, N.J. who founded the young widows group. “What sparked my political advocacy is my husband’s death,” Ms. Addison said. .

In many ways, the people joining these groups echo those who lost loved ones in the Sept. 11, 2001 attacks and coalesced into a political force, pushing for an investigation that led to changes in intelligence gathering. Their numbers, however, are much greater. About 3,000 people died on 9/11; the pandemic has claimed more than 600,000 American lives, and more are dying of Covid each day.

But there are significant differences. Sept. 11 brought the country together. The pandemic tore an already divided nation further apart. It is perhaps paradoxical, then, that these victims and relatives are coming to Washington to ask that politics and partisanship be set aside and that Covid-19 be treated like any other disease.

“Unfortunately you have to use the political system to get anything done, but this is not really about politics,” said Kelly Keeney, 52, who says she has been sick for more than 500 days with the effects of Covid-19. Last week, she attended a Zoom advocacy training session run by Ms. Urquiza, who encouraged attendees to bring photographs of their loved ones to Washington for a candlelight memorial next week.

“We want to make sure that our legislators know the issues that are important to us and we are an organized front that cannot be ignored,” Ms. Urquiza said on the call.

At the Democratic convention last summer, Ms. Urquiza very publicly denounced Mr. Trump. But her group is nonpartisan, and with Mr. Biden now six months into his term and squarely in charge of the response, she and other activists are training their sights on him. She wrote to the president asking him to meet with her group’s board; the White House offered other officials instead.

Together the two women helped persuade Ms. Krebbs’s congressman, Representative Greg Stanton, Democrat of Arizona, to introduce the resolution calling for March 1 to be designated as a day to honor victims of the pandemic.

Mr. Stanton said he was at a loss to explain why no Republicans had signed on.

“We’re going to get this thing done — it’s the right thing to do, whether it happens to be bipartisan or not,” he said in an interview. “The American people need to have a day where we can collectively say to our citizens and their loved ones who are still suffering: ‘We see you. We hear you. We stand with you and we care.’ ”

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