For weeks, the covid-19 survivors had been calling their representatives in Congress, pleading for an appointment.
Most congressional offices simply ignored them. Others blamed stricter covid protocols or staffers working from home for being unable to schedule time.
So, as the virus surged once again, roughly 50 activists from a dozen grass-roots organizations across the country converged on Washington at the end of the July, determined to make their voices heard.
Their list of demands was long. They wanted financial help for the estimated 136,000 children who had lost a parent or caregiver. They wanted more research for long-haul patients grappling with the virus’s persistent symptoms. They wanted an independent commission to investigate and prepare for the next pandemic — like the one convened after the Sept. 11, 2001, terrorist attacks.
But their most immediate ask — the one they previously thought would be the least objectionable and easily secured — was for the country to designate a day of national remembrance to recognize all the people they, and the entire country, had lost.
“What we want is for people to acknowledge us and the people we loved,” said Jessica Ayers, who lives in rural South Carolina.
Ayers, 40, had hated politics her whole life. She never considered herself an activist. She was so shy she struggled to talk to customers at the pharmacy where she worked. But seven months after her father’s death, here she was in a D.C. hotel room nervously dialing the office of her senator, Lindsey O. Graham (R-S.C.).
His office had told her Graham was too busy but offered a short call with two legislative aides. When the staffers answered, Ayers struggled to get the words out.
She thought of all the other covid survivors who had already failed to get as far as her with their own representatives. They’d tried to set up meetings with 130 lawmakers during the lobbying blitz, but only 40 congressional offices agreed to hear them out — mostly offering a staffer by phone or Zoom.
As Graham’s aides waited, Ayers finally stammered, “I am one of the millions of Americans harmed by covid-19. The last I saw of my daddy was his back as he walked away from me toward the emergency room doors …”
‘It’s not political’
In the year and a half since the pandemic began, grass-roots networks that began as online support groups — long-haulers working together to troubleshoot symptoms, grieving families looking for comfort — have increasingly turned their focus from personal pain toward public calls for accountability and recognition of their loss.
The route from tragedy to political activism is, of course, a well-worn path in Washington. On matters of health, it has generated powerful advocacy on issues from cancer to drunken driving to tobacco.
But as covid survivors begin to mobilize, they are facing an especially steep hill. They are making their pitch amid the sudden rise in new coronavirus cases fueled by the delta variant — at a time when America remains bitterly divided on masks and vaccines. Republicans have been reluctant to acknowledge suffering for fear it could be construed as criticism of former president Donald Trump. Meanwhile, President Biden and Democrats have been preoccupied with fierce resistance to vaccine mandates and new masking recommendations.
Even before they arrived in the nation’s capital, the activists had already gotten a resolution introduced in the House of Representatives.
The measure would designate the first Monday of every March as “COVID–19 Victims and Survivors Memorial Day.” And they had persuaded 50 House members — all Democrats — to co-sponsor it.
The goal was to increase the number of sponsors to 75, including at least one Republican. And to persuade someone to introduce a similar resolution in the Senate.
“It doesn’t take any money. It’s not political. All it is, is a message to those families. 'That person you lost mattered. Those deaths aren’t being ignored,’” said Kristin Urquiza, who lost her father last year and delivered a blistering speech about Trump’s dismissal of the pandemic at last year’s Democratic National Convention.
The group Urquiza co-founded, called Marked by Covid, was the driving force behind the three-day lobbying blitz.
Many of the dozens of activists involved — new to the process — didn’t even know how to contact their representatives, much less persuade them to sign legislation. So in the days leading up to their trip to Washington, Urquiza held a boot camp for more than 50 activists over Zoom.
“These people work for you. You are their bosses,” Urquiza told them. “You have every right to take up their time and talk about the most important public health crisis of our lifetime.”
Other leaders shared sample statements they had revised over and over — condensing their year of wrenching grief into five-minute sound bites. Practice in front of a mirror, they suggested. Think about what you want them to know about the mother, brother, husband you lost.
“That is something no one can argue with or take away from you,” Urquiza said. “That is your superpower.”
‘All we have left’
Ayers, the pharmacy technician from South Carolina, had taken that advice to heart. She spent hours typing out exactly what to say to Graham’s office. But minutes into the conference call, things were already going wrong.
The two staffers let her speak at first — describing her father’s final days alive when he became blind and lost the ability to speak — but after a few minutes, it became clear what the aides were most concerned about was that Ayers had allowed a Washington Post reporter to join the call.
“We can’t really proceed with a reporter here,” one of the aides insisted.
Ayers asked the reporter to hang up, but the aides cut her off, telling her they’d rather call her phone directly to make sure no one was listening. When Graham’s aides called, Ayers recounted afterward, it went for some reason directly to her voice mail. And when she tried calling them back over and over, they didn’t pick up. They also didn’t respond to a request for comment.
That night, Ayers and others gathered outside the White House to hold a vigil.
For months, the activists had sent a flurry of letters and emails to the Biden administration, trying to secure a meeting. Even Urquiza received little response.
The vigil outside the White House was supposed to draw reporters and hopefully pressure Biden and others leaders to support them. Scraping together funds, they had rented microphones and speakers, obtained a permit from the National Park Service, and bought 610 luminary candle bags to represent the 610,000 dead.
But minutes before the event was supposed to kick off, a torrential storm appeared, soaking the paper luminaries and sending attendees scattering. By the time the downpour was over, only two dozen people remained.
They decided to hold the event anyway.
The soaked activists formed a semicircle around the remaining candles. Some took out framed pictures of their loved ones.
Rima Samman, 42, whose brother died of covid-19, shared the story of how she had started an impromptu memorial for him a few months ago in New Jersey. She had placed shells in the shape of a heart on the beach, wrote his name on a stone and placed it inside the heart.
She woke up the next morning to 200 Facebook requests from other survivors, asking her to write their loved one’s names and put them in the heart, too. Within weeks, the stone memorial had hit 3,000 names, with people from all over the country coming to place a stone inside.
“I know some people may not understand this. It’s just some stones and painted shells on the ground,” she said at the vigil. “But for many of us, that’s all we have left.”
‘What does that cost?'
The next morning, the activists were back at it.
At the last minute, White House officials had offered a short meeting with one of the president’s advisers, Cedric L. Richmond. Sen. Mark Kelly (D-Ariz.) had also agreed to see them, as well as an aide to House Speaker Nancy Pelosi (D).
But the most unexpected coup was a meeting with an aide to House Minority Leader Kevin McCarthy (R).
After weeks of fruitless emails to McCarthy’s office, Aileen Brooks, who lives in his California district, had decided to try a gentler, more flattering tone and quickly heard back.
Now, standing outside his office, Brooks strategized with another activist about the right approach.
“Maybe we can talk about how the Biden administration isn’t doing enough to help?” the other activist suggested.
“It’s true,” said Brooks, 42.
When she emerged 30 minutes later from the office, she recounted how she found herself starting to cry as she talked about her father’s death. McCarthy’s aide expressed sympathy but also noted how difficult it would be to create any new national remembrance day. What the aide wanted to know most, it turned out, was whether Brooks would support U.S. officials suing China for the economic damage wrought by the virus. McCarthy’s office did not respond to requests to comment.
Meanwhile, Urquiza and other activists were meeting with Wendell Primus, Pelosi’s top aide for health policy.
“Not only are people dying, but the families they’re leaving behind, they feel totally ignored,” Urquiza told him. “Even this meeting with you, to be honest, it was so hard to get.”
She talked about the danger of America forging ahead without learning any lessons from the past.
“I hear you,” Primus assured her several times during the hour-long meeting. He promised to bring up the idea of a memorial day and a commission to investigate the pandemic response.
“There have been more than 600,000 deaths,” Primus said. “Everyone at this point knows someone who’s been affected.”
Hours later, the covid activists regrouped at the base of the Capitol. They were exhausted, covered in sweat and footsore after walking between dozens of congressional offices.
Despite all their work, they had not won a single new sponsor for the covid memorial day resolution. No Republican seemed remotely close to joining.
When contacted by a reporter, staffers confirmed that Kelly had met with the activists and said in a statement, “Remembering those lost from covid-19 reminds us the true cost of this pandemic and how we can improve our response to public health emergencies so that fewer families experience the loss that they did.”
But while Kelly and aides for Sen. Elizabeth Warren (D-Mass.) have expressed interest, neither has committed to introducing a Senate version.
“To be honest, it’s hard to tell if we made a difference,” said Laura Jackson, 46, whose husband died last year from covid. She had driven up from Charlotte with her daughter to join in the lobbying.
“You can’t help but be bitter when you look at how many people have died and how little that seems to matter,” she said. Amid the afternoon heat, she sat down in the shade, seeking refuge in the Capitol’s shadow.
“What’s so hard about saying yes to a day that honors those who died? What does that cost them to do that?” she asked quietly. “It’s already cost us everything.”