A new group is fighting to ensure America learns from, rather than forgets, the devastation wrought by the pandemic.

When I log in to Zoom on a Thursday night in mid-July, the three dozen other participants are talking about honeymoons. Kevin, one of the people on the call, recently got married and is planning his. Their ages and races run the gamut; some are sitting on couches, a few with dogs next to them, while others sit in home office chairs.

These people didn’t know each other before early 2020. But they now spend most of their Thursday nights together. They are joined by something that’s become horrifically common: losing a loved one to Covid, or suffering the lingering effects of the virus themselves. Kevin, I later learn, lost both of his parents. Every Thursday night an organization that sprang up in the pandemic called COVID Survivors for Change hosts a COVIDconnection group-counseling session over Zoom for anyone to join.

At the start of the meeting, Monica asked that the group acknowledge the first anniversary of the death of her father, Roberto. The chat on the side of the screen lights up with empathy. “Virtual hugs, Monica,” one person writes. “Sending you love and care Monica. May peace find you,” says another. “It’s ok to not be ok.” Then the conversation becomes more personal. This year is filled with the first anniversaries of the deaths of hundreds of thousands of people’s loved ones. Just as the rest of the world wants so desperately to move on. “People say the 1st year is the hardest but for me, the start of the 2nd has been much worse,” someone writes. Another adds, “Im tired of seeing ads about how it is over and we can all get out of our fat pants and enjoy life again. whatever.”

“This group has truly helped me,” Monica responds to the outpouring of support. “Even though I don’t wish this pain on ANYONE, it’s extremely comforting that I’m not alone in this <3.”

One in five Americans has lost a relative for close friend in the pandemic, and they will tell you it is a uniquely traumatizing experience, one suffered in isolation and fear. It’s also one that’s still fresh; some only lost their loved ones a few months ago, and as the virus continues to spread, more and more of us will join their ranks. For those who are ready to put their grief to use, there’s COVID Survivors for Change. The members of this group don’t want their loved ones to be forgotten as the country tries to move on. And they want to salvage something positive out of such a devastating catastrophe. The pandemic upended nearly everything in our lives and showed us that some things could, and should, be done differently. The members of COVID Survivors for Change want to hold on to the positive transformations and make lasting change so that the next crisis doesn’t wreck so much havoc.

“When people find our organization they are saying, ‘I think I might be ready to speak out. I might be ready to be part of an effort to make change. Can you help me do that?’” said Chris Kocher, founder of COVID Survivors for Change. “I view that as a sacred trust.”

Kocher, who is 42, with intense blue eyes and a demeanor that comes off as determined in any setting, calls himself a “practical idealist” and hails from the gun violence prevention movement. After working as an attorney for former New York City mayor Michael Bloomberg, he helped launch Bloomberg’s nonprofit Everytown for Gun Safety. As with COVID Survivors for Change, the goal was to connect survivors with counseling and support groups while also helping them learn how to tell their stories in service of making lasting policy change. Kocher has never lost a loved one to gun violence, nor to Covid. But as the virus ripped through his community in Queens, New York, he felt compelled to do something. “The government was failing in its response,” he said. He wanted to “help this community heal in some way, but also to speak out and fight for the change we desperately needed.”

He focused where he saw a gap: a place where survivors could come for regular psychological support from mental health professionals, coupled with memorials for those lost and training to become advocates for change. People found him mostly through word of mouth, “survivor to survivor,” he said. The organization’s first public event was a memorial in Washington, D.C., in October 2020, where they set up 20,000 empty chairs on the mall.

Besides Kocher, there is now an organizing and outreach manager and volunteer leaders, and plans are underway to build a more formal advisory committee made up mostly of survivors, plus some public health and organizing experts. Today, the group has more than 10,000 members. “One of the heartbreaking things is because Covid has been in almost every community, if not every community, there are people all over the country who have been part of this,” Kocher said. “Growing quickly was heartbreaking but to be expected, given the immense impact and need for resources.”

Jerri Vance, her husband James, and her two daughters all tested positive for Covid in early December. Her husband worsened so quickly that within a few days he was hospitalized, first at the hospital near their home in Princeton, West Virginia, but, because they didn’t have any Covid beds, transferred three and a half hours away and then, when he needed to be put on a ventilator, flown to a hospital in Pittsburgh five hours away. Vance herself was also very sick and, she thinks, probably should have been hospitalized, particularly for the three days when she couldn’t get her fever to break. But she had two sick children and no one who could risk watching them. She instructed the oldest, age 12, to call 911 if they couldn’t wake her.

Vance and her daughters couldn’t visit James in the hospital, but they got to FaceTime him before they put him on a ventilator. He was on it for 19 days. “It was obviously the most stressful and hardest month of my life,” she said. And then the doctors took him off the ventilator and started talking about rehab and therapy. He was young and strong, a former Marine and police officer. “I never thought he wasn’t going to make it,” she said. “I just thought, ‘What an amazing story we’ll have to tell someday.’”

The night of her daughter’s birthday, they all got to talk to James for 20 minutes. The next morning Vance got the call she never expected: she had to get to the hospital as soon as possible if she wanted to see her husband before he died. She drove as fast as she could with a police escort at her side, but she was about halfway there when she got a final call telling her he had passed away.

Vance, a teacher, took part in the Red for Ed strikes in 2018, but she’d never spoken directly to lawmakers before. “I’m not a public speaker at all,” she said. After joining an online group for young Covid widows, she crossed paths with Kocher. She’s now talked to her senators and congressional representatives to lobby for Covid relief and for federal paid family leave. In August, she’ll travel to New York to join a march.

“I really want to do something. I don’t want all these 600,000 people to just be a number, to be a statistic or something that people forget,” she said. She noted that her husband always wanted to help others. “It feels like it’s my way of honoring James,” she said. It brings her comfort to tell her story in the hopes of reaching others like her or making change. She wants to model standing up for their values to her children. And she’s now part of a bigger community. “We’re all bonded by the same tragedy, and we’ve come together to fight for something that can benefit everyone, not just us,” she said.

At first, survivors wanted just an acknowledgement from leadership, from the Trump administration that had its head in the sand. So they traveled to D.C. for the Covid remembrance, and they have since urged people to include the color yellow in their Fourth of July celebrations in honor of those lost. They’re planning a massive march in August in New York City and other cities to take 600,000 steps, one for every American who is now gone.

But for many members, acknowledgment is not enough. They come to the organization because they want to use their grief as a way to push for change, from things as small as a day of remembrance to as big as scholarships for children whose parents died from Covid.

Learning how to push for these issues effectively is a major focus of the group. In January COVID Survivors for Change held a training in how to effectively lobby legislators and followed it up with a lobby day in March to push for the Covid relief bill Congress was considering. In June about 75 members joined a Survivor Summit to coalesce around policy goals and how to push them forward.

“Many of the folks we work with have never even spoken at a school board meeting or written to Congress,” Kocher said. “A lot of this is working with them to help them find their voice.” Some of that is preparing them for what to expect and making sure they’re ready. Kocher aims to help people “in a trauma-informed way.” He brings people in from the gun violence prevention movement to share what to expect after speaking up and how hard change can be. Members are urged to practice in front of family and friends or even a mirror. They’re advised to have water and tissues on hand while speaking, and to have someone to talk to afterward. They’re reminded that they don’t have to share all parts of their stories if some are too painful. And they’re warned that just because they share the most painful experience of their lives with a lawmaker, a lawmaker may remain opposed—and if they’re not ready for that, that’s okay. “You can say yes today and say no tomorrow,” Kocher said. “Your well-being has to be the most important, and your family’s well-being has to be the most important [thing] than making change, even if it’s something we so desperately want.”

The weekly support groups dovetail with these efforts. They are to “make sure people had a regular touch point,” Kocher said. As people are trained to become public advocates, they always have mental health professionals and fellow sufferers to return to on Thursday nights.

It’s a lot to take on in a short amount of time. For most, it’s been less than a year since they lost their loved one or contracted the virus. “In gun violence prevention, if someone came to us in less than a year we’d be like, ‘Are you sure you’re ready?’” Kocher said.

It was a year ago this month that Charonda Johnson lost her father, Kevin Taylor. Her parents’ church in Delaware was allowing people to go maskless last summer, and her parents kept attending without masks on, singing and leading worship. In late July her father got so sick he was fainting and he was hospitalized, eventually diagnosed with Covid. He wasn’t old or at risk except for his race—he was a 62-year-old Black man. Johnson is a veteran who did two deployments in the Iraq war and worked with the families of the fallen. “I have lots of experience with crisis and trauma,” she said. But “I’ve never felt this helpless in my entire life.”

Johnson isn’t the only one who lost a father when Taylor died. He had “mentored and fathered” many people in the community, she said, many of whom “still call him Dad.” Taylor spent 20 years in the Air Force and helped people transition from the military to civilian life. After that he worked as a social work case manager, all while deeply involved in the church. “That’s the impact of my dad’s life,” she said.

“When my dad died, I didn’t really think it would send me on a mission,” she said. But that’s exactly what it’s done. Not long after he died she traveled to a memorial in Washington, D.C., for those who had died and “had this epiphany,” she said: “Your dad didn’t die alone.… you’re not alone, your family is not alone, your grief is not alone.” She realized she had the opportunity to transform the loss of her father from a senseless one to something with meaning.

It’s what drove her to seek out Kocher and COVID Survivors for Change. She’s been on the receiving end of advocacy before, having served as a veteran coordinator for then-Senator Joe Biden. She’d never engaged in activism on her own, though. “I really felt that work in Washington was sacred, I didn’t want to mess with it,” she said. But her father’s death changed all of that. She’s since lobbied her state representatives in favor of paid family leave.

“Things don’t change until people begin to empathize and step into other people’s shoes. That’s what causes things to change,” she said. Covid survivors “endured it and we’re still here. We’re the ones that can say what needs to happen moving forward.”

As with so many events during the pandemic, the June Survivor Summit happened over Zoom. It came as many Americans thought the country was possibly finally emerging from the pandemic—a difficult time for those still living in its deep, dark shadow. “Head plus heart still matters,” Kocher assured the audience, a corkboard with buttons blaring slogans like “We The People” and “MOVE/MENT” and Live Strong-style wristbands of all colors hanging on the wall over his shoulder. “Combining the facts of how we move forward smartly and effectively [and] anchoring it in the loss that you all have experienced, the symptoms that you all are experiencing, that is how you bring people into a movement.” Personal stories, he told them, can be used not just to dispel misinformation, but to inspire lawmakers “to stand with you.”

Through surveys of its membership, small-group brainstorming sessions among survivors, and one-on-one conversations with members, areas of consensus emerged, and the group has created a policy agenda, which includes a range of priorities from providing material support to those who have suffered Covid or lost family members to erecting memorials across the country to establishing a congressional Covid commission to help ensure it doesn’t happen again. The ideas come from membership, but there are some principles guiding what fights they’ll take on: They have to have a close connection to Covid, and they have to combine immediate wins with long-term goals. “That’s how you build momentum as a movement,” Kocher said.

They know congressional action is important, but they also plan to focus heavily on the state and local levels. That’s another lesson learned from the gun violence prevention movement—while gun legislation stalled in Congress, success was found elsewhere. One speaker at June’s summit, Emma Davidson Tribbs, is a state legislative expert who has worked on issues as varied as voting rights, clean energy, and reproductive rights. She walked through the intricacies of state budgeting processes and legislative sessions. “We’re here to make this really easy and to see which states are the most ready for your voices, and which states need your voice the most,” she told the audience. She and Kocher have put together a kit to help people find their representatives and language to use in contacting them. “You matter as their constituent. You are their bosses,” Davidson Tribbs reminded them. “As a survivor you are considered an expert on this issue.”

The group’s policy goals are meant to be adapted and advocated for by each member in their own communities, allowing them to focus on the ones that they care about. But the whole organization has jumped into advocating for paid family leave on a national level. It has partnered with Paid Leave for All, a national campaign fighting for paid family leave, and members participated in an advocacy day in June to lobby Congress and share their stories. Members are now signing on to an open letter and will partake in a bus tour Paid Leave for All is kicking off in August.

COVID Survivors for Change was looking for something that was meaningful to its membership and where it could have a big, immediate impact. Paid leave could have eased people’s stress as they lost loved ones to Covid; it will be important to long haulers who may not be able to work regular hours right away. While it’s significant for every American, “it was uniquely important to Covid survivors,” Kocher said. “Paid leave was something that seemed like a very obvious next step.”

As Jerri Vance was battling Covid, caring for her kids, and fighting for and then grieving her husband, she didn’t have any paid leave. She took a leave of absence from her teaching job and coworkers donated their own paid time off to her. That lasted a little while, but she’s currently going without pay. Her family is living off of money raised by a GoFundMe someone set up for her. Twelve weeks of paid leave, she said, would have eased the financial strain as they all experienced so much trauma, especially as medical bills have started rolling in for her husband’s hospital stays and for her daughters’ therapy sessions.

On the Paid Leave for All lobby day, she shared all of that with centrist Democratic Senator Joe Manchin’s staff, who she said took her story seriously, even if the senator has sometimes poured cold water on Democrats’ ambitious infrastructure bill that includes paid leave. One of his staffers has stayed in touch with her by e-mail since. “He says it affected him and made him open his eyes,” she said.

Advocates for paid leave need people like the members of COVID Survivors for Change. “It’s hard to visualize,” said Dawn Huckelbridge, director of Paid Leave for All. Child care advocates can stage an event at a day care. It’s hard to stage an event in someone’s home as they recover from cancer treatment or adjust to a new baby. Their stories help “humanize” it, she said. “There is no victory that doesn’t incorporate storytelling and human experience and something that people can relate to themselves.”

“Coming out of this crisis…this has to be the lesson that we’ve learned,” she added. “There has to be transformational policy change.” Paid leave, she argues, is the “clearest response” to what the country has just suffered.

On the advocacy day, members met with staffers for both Democrats and Republicans, meeting with three senators themselves, including Republican Senator Bill Cassidy. “There is a level of respect that is shown across parties,” Kocher said. Senator Bob Casey stayed for 45 minutes to hear their stories. “There were some meetings where people were in tears,” Huckelbridge said. Survivors’ stories added a sense of urgency that can sometimes be lost when talking about paid leave—a nice thing to have that most Americans support, but that rarely gets top billing. It was also powerful to have a direct and concrete ask connected to those stories.

COVID Survivors for Change vows to “support anyone who votes for this and push back and hold accountable anyone who does not,” Kocher said. And they have the manpower to back it up, given how many people have been impacted by Covid in some way. “You really are talking about in the tens of millions of Americans in every city, in every state, in every town, in every county in America,” he said. Typically, those who most need paid leave are low-wage workers suffering personal crises; they’re short on time and resources. Covid survivors could be a constituency with the ability to carry the cause forward. “We expect them to stay engaged in the fight,” Huckelbridge said.

Ultimately, Kocher’s goal for the movement is twofold: to support those who are suffering now, and to ensure more support for those who suffer in future crises and pandemics. “Because we know it will happen again,” he said.

“We’re helping people find their new family,” Kocher added. “It’s a family that is anchored in heartbreak, but also anchored to the desire to be part of a positive effort of change.”

Published in The Nation

ATLANTA (AP) — As her father lay dying last August from the coronavirus at a Georgia hospital, Lindsay Schwarz put her hands on his arms and softly sang him lines from their favorite songs.

Eugene Schwarz had been admitted three weeks earlier, but the hospital had not allowed his daughter to visit him for fear of spreading the virus. The 72-year-old looked nothing like the ebullient, crisply dressed cardiologist who used to kiss her on the forehead before heading off to work.

“I was hugging my father, and it didn’t really feel like my father,” Schwarz said.

Less than an hour after she was allowed to see him, he died.

Schwarz recalled the painful experience in a phone interview on Friday to raise awareness about the devastating impacts of COVID-19. She and other victims of the virus, including people who were infected months ago and are still experiencing severe symptoms, organized rallies in Atlanta, New York, Washington D.C., Denver and more than a dozen other cities around the country on Saturday to encourage people to get vaccinated and wear a mask.

Tanya Washington, who organized the Atlanta rally of COVID Survivors for Change, told about 50 people gathered outside a downtown church on Saturday that “COVID is still very much a part of our lives.”

“If it saves one person from hurting, just one person, it would have been worth it,” said Washington, who lost her father to the coronavirus in March.

She earlier recalled her harrowing final moments with him.

“Never in a million years did I think that I would have to take my dad off of oxygen dressed from head to toe in PPE and say goodbye to him,” she said. “I couldn’t touch him except through gloves. I couldn’t kiss him except through a mask.”

The rallies came amid a surge in infections around the country that are again straining hospitals, particularly in the South, where vaccination rates remain low. COVID survivors and those who have lost loved ones to the disease say they are frustrated by ongoing resistance to vaccines and misinformation about the virus.

“It has become a political issue, and it’s not about that. It’s a real virus, and it’s killing everybody no matter what political thoughts you have,” said Paula Schirmer.

Schirmer, 50, of Marietta, Georgia, her husband and three children contracted the virus in March 2020, but her symptoms have not gone away even more than a year later. She has difficulty remembering appointments and words — key to her job as an interpreter — and suffers from intestinal problems. The virus also took a toll on her mental health.

Schirmer’s husband was hospitalized for nearly two months, and she twice received calls from nurses informing her that he was in a critical state. The experience has left her with post-traumatic stress disorder, she said.

“It was awful not knowing what was going to happen,” she said.

The rallies also aimed to push lawmakers for financial and medical help for COVID victims.

Marjorie Roberts, 60, said she continues to require regular medical care for damage from COVID. She has lung and liver problems and lost seven teeth. She can now barely walk several blocks and sometimes has no energy hours after waking up.

“I was living my life like it was golden. I was traveling,” she said. “I literally have to start my life all over again.”

Because of the pandemic, Schwarz has put off traveling to New York to bury her father’s ashes at a cemetery where other members of the family have been laid to rest. That’s made it hard to move forward.

“It’s delayed closure,” she said. “I don’t want people to go through that.”

Published in Associated Press

More than one hundred marchers carried signs and pictures of their family members who passed on, made their way from Cadman Plaza over the Brooklyn Bridge on Saturday in the COVID March to remember.

The marchers were joined by healthcare workers and the New York State Nurses Association and came from all over the country.

“I know I had to be here and represent Bobby, and I’m going to spread his ashes over the Brooklyn Bridge today,” said Debra McCoskey-Reisert.

The marchers wore yellow and walked to remember the victims and survivors of COVID-19.

The movement was started by Hannah Ernst, 15, from New Jersey, who never got to walk the Brooklyn Bridge with her grandfather, who died of COVID in May 2020.

“Losing him was the hardest thing I’ve had to endure. Walking the Brooklyn Bridge was something I wanted to do with him – unfortunately, that didn’t get to happen,” Ernst said.

Walkers marched 1 million steps, surpassing their goal of taking 615,000 steps for lives lost to COVID-19.

Published in WABC New York

For nearly a decade, Chris Kocher worked to help survivors of gun violence speak out for change. Now he’s doing the same for survivors of the coronavirus pandemic.

COVID Survivors for Change bills itself as a national, nonpartisan lobbying group that brings together Americans who have survived COVID-19 or lost a loved one to it.

The number of people who have suffered such a loss is staggering. According to Johns Hopkins University, more than 612,000 people have died from complications due to the virus in the United States. More than 34 million have been infected.

Kocher — who started the program that became the Everytown Survivor Network, the nation’s largest community of gun violence survivors — says there’s commonality between COVID survivors and victims of gun violence.

“There is the same thing at the core, which is people who have experienced trauma,” Kocher told Yahoo News in a recent interview. “It’s people who have been impacted by a public health crisis, who have lost a loved one and who want to be part of an effort to change.”

The changes that the group is lobbying for include paid family leave and support for millions of so-called COVID long-haulers and children who have lost a parent to COVID-19, which researchers estimate to be more than 46,000.

“The scale of need is so astronomic,” Kocher said. “I think that humans are almost not capable of understanding an enormous number like more than 600,000 [dead], more than 30 million people who have been infected, more than 40,000 children who lost a parent or caregiver — what does that look like? But you can understand what one story looks like.”

One of the main things his group does is help survivors tell their stories. More than 500 have received advocacy training since COVID Survivors for Change launched last September.

“When you hear these stories, not only do you understand what the pandemic has cost millions of families across the country, but you want to be part of the effort to make sure that this never happens again,” Kocher said.

The group has also organized a nationwide march on Aug. 7 to raise awareness about the ongoing needs of the COVID survivor community.

“I think a big obstacle is people are exhausted by the pandemic,” Kocher said. “Even if you haven’t lost a loved one or had COVID yourself, you’ve had a rough year. People want to move past this. And so, you know, we’re working really hard to make sure that people understand that the pandemic is not over. COVID is not over.”

Published in Yahoo News

New grass-roots groups are learning how to lobby for things like mental health and disability benefits, research on “long haulers,” an investigation of the pandemic and a day to honor the dead.

WASHINGTON — In Facebook groups, text chains and after-work Zoom calls, survivors of Covid-19 and relatives 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 and Young Widows and Widowers of Covid-19, 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” and a national holiday to honor victims. Most of all, they want a commission to investigate the pandemic and make recommendations to prevent future outbreaks from causing so many deaths.

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.

A House resolution expressing 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 J. Trump.

The partisan rancor that killed a plan to investigate the Jan. 6 riot at the Capitol has made the Covid activists’ search for answers all the more challenging.

“This isn’t a political finger-pointing exercise,” complained Diana Berrent, of Long Island, 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 half-dozen 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. “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 on Sept. 11, 2001, 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.

“For the record, I feel ignored,” she said. “We all do.”

Many survivors and family members view the president as too eager to declare “independence from the virus,” as he did on July 4, and not attentive enough to the plight of “long haulers” who are desperate for financial and medical help.

Ms. Bishof, the former firefighter from Florida, said members of her long-haulers group cheered out loud when Senator Tim Kaine, Democrat of Virginia, described himself as a Covid long hauler during a Senate Health Committee hearing in March. “We were like, ‘Contact him now!’” she exclaimed.

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 Representatives Donald S. Beyer Jr., Democrat of Virginia, and Jack Bergman, Republican of Michigan, introduced bipartisan legislation authorizing $100 million for research and education into long-haul Covid.

Others have had a harder time getting buy-in from either side.

After her father died of Covid-19, Tara Krebbs, a former Republican from Phoenix who left the party before Mr. Trump was elected, reached out to Ms. Urquiza on Twitter. She was frustrated and angry, she said, and feeling alone. “There was a lot of silent grieving at first,” she said, “because Covid is such a political issue.”

“There was a lot of silent grieving at first, because Covid is such a political issue,” said Tara Krebbs, a former Republican whose father died of Covid-19.

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.’”

That is what survivors — and especially those who have lost loved ones — seem to want the most: to feel seen and heard.

They are also hoping to pack a visual punch by partnering with artists who are joining them in Washington to raise awareness and push for permanent memorials.

One of them, 14-year-old Madeleine Fugate, a rising ninth-grader in Los Angeles, has stitched together a Covid 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 Jill Biden, the first lady, asking for permission to display the quilt on the National Mall.

Like breast cancer survivors who adopted the pink ribbon, Covid-19 survivors groups have adopted their own symbol — a yellow heart. Rima Samman, whose brother died of Covid-19, created a memorial on the beach in Belmar, N.J., of rocks with the names of victims inside hearts fashioned from seashells painted yellow.

It attracted national attention but was vulnerable to the elements, and is now packed up awaiting a permanent home. It is too big — 12 hearts bearing 3,000 names — to bring to Washington. Instead, Ms. Samman is seeking a permit for a candlelight memorial next week in Lafayette Square, near the White House, with 608 luminaries — one, she said, for every 1,000 lives lost.

Published in The New York Times

Over the long Fourth of July weekend, COVID-19 survivors added pops of yellow to their patriotic decor, like flowers or table cloths, to show solidarity with the more than 600,000 people who have died of the disease in this country and those who are still suffering.

The effort was organized by a group called COVID Survivors for Change using #addyellow to share stories on social media.

Marjorie Roberts participated from Johns Creek, Georgia. She is a long hauler who first got COVID-19 in March of 2020 and also lost a close friend to the disease. She speaks with Here & Now‘s Jane Clayson.

This segment aired on July 5, 2021.

Published in WBUR