Survivors, victims’ families aim to turn grief to change
WASHINGTON — In Facebook groups, text chains and after-work Zoom calls, COVID-19 survivors and loved ones of those who died from it are organizing into a vast grassroots 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-19 “long haulers,” a commission to investigate the pandemic, and a national holiday to honor its victims.
As President Joe 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 HIV/AIDS epidemic has an illness been so colored by politics, and the new COVID19 activists are navigating challenging terrain.
A House resolution of support for designating March 1 as a day to memorialize the pandemic’s victims has 50 co-sponsors — all of whom are Democrats. The call for an investigative commission, similar to the one that followed the 9/11 terrorist attacks, has been met with silence from Mr. Biden, who appears determined to look forward rather than rile Republicans by backing an inquiry that would focus in part on former President Donald Trump.
The partisan rancor that killed a plan to investigate the Jan. 6 riot at the Capitol has made the COVID-19 activists’ search for answers all the more challenging.
“This isn’t a political finger-pointing exercise,” said Diana Berrent, of Long Island, N.Y., who founded the group Survivor Corps. “We are not looking for a trial of who was right and who was wrong. We need an autopsy of what happened.”
Many of the new lobbyists are political novices. but some are not strangers to Washington.
COVID Survivors for Change is run by Chris Kocher, a media-savvy veteran of the gun safety movement who said he has already trained more than 500 survivors in the tools of advocacy.
Marked by COVID, the group coordinating next week’s event, is run by Kristin Urquiza, a former environmental activist from San Francisco whose impassioned obituary for her father went viral — and landed her a speaking slot at the Democratic National Convention. She is bringing together more than a halfdozen coronavirus-related groups for the lobby days.
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.
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-19 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 to be set aside and that COVID-19 be treated like any other disease.
At the Democratic convention last summer, Ms. Urquiza 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.
Many survivors and family members view the president as too eager to declare “independence from the virus,” as he did July 4, and not attentive enough to the plight of “long haulers” who are desperate for financial and medical help.
Ms. Bishof said members of her long-haulers group cheered out loud when Sen. Tim Kaine, D-Va., described himself as a COVID-19 long hauler during a Senate Health Committee hearing in March.
Ms. Bishof was also instrumental in forming the Long COVID Alliance, a coalition of health and coronavirus-related groups, which scored a preliminary victory in April when Reps. Donald Beyer Jr., D-Va., and Jack Bergman, R-Mich., introduced bipartisan legislation authorizing $100 million for research and education into long-haul COVID-19.
They are also hoping to pack a visual punch by partnering with artists who are joining them in Washington.
One of them, 14-year-old Madeleine Fugate, a rising ninth grader in Los Angeles, has stitched together a COVID-19 Memorial Quilt — inspired by the AIDS Memorial Quilt of the 1980s — of fabric squares donated by people who lost loved ones to the virus. She has written to first lady Jill Biden, asking for permission to display the quilt on the National Mall.