COVID-19 long-haulers plead for government action

COVID-19 long-haulers and advocates are stepping up their calls for state and federal officials to take action and dedicate funding to those who have endured the mysterious condition that stems from the coronavirus.

After months of sharing their stories of ongoing symptoms, long-haulers are appealing to elected officials for assistance and begging them to provide help.

“We need to have more legislation for survivors like ourselves and not just keep telling our stories because there's a bazillion stories out there now,” said Maya McNulty, a long hauler from New York. “We're not like some Netflix series that you can just binge watch and then the problem goes away. We are living with this … disease, and there is no hope.”

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The grassroots, nonpartisan group COVID Survivors for Change launched a week of action on Friday, with delegations from all 50 states dedicated to illustrating how the virus has changed the lives of long-haulers and families who’ve lost loved ones.

Advocates said they plan to contact officials, including Michigan Gov. Gretchen WhitmerGretchen WhitmerMichigan orders 'all-hands-on-deck' response to water crisis Equilibrium/Sustainability — Presented by Altria — Michigan leaves majority-Black city with lead-contaminated taps for three years Whitmer vetoes bill on bird feeding over deer fears MORE (D), Pennsylvania Gov. Tom WolfTom WolfJosh Shapiro officially launches Pennsylvania gubernatorial campaign Republicans are today's Dixiecrats The Hill's Morning Report - Presented by Altria - House debt vote today; Biden struggles to unite MORE (D), Montana Gov. Greg GianforteGregory Richard GianforteOvernight Health Care — Presented by EMAA — Biden unravels Trump rule banning clinics from abortion referrals COVID-19 long-haulers plead for government action Lawsuit challenges Montana ban on employer vaccine mandates MORE (R), Kentucky Gov. Andy Beshear (D) and Alaska Gov. Mike Dunleavy (R), to push for initiatives to support COVID-19 survivors.

Their requests range from direct funding for long-haulers to a 9/11-style commission to investigate how the pandemic led to hundreds of thousands of deaths and potentially millions of long COVID-19 cases.

The delegations plan to photograph empty chairs to signify all of those who’ve died of COVID-19 and long-haulers who experience persisting symptoms. The chairs are meant to serve as a “powerful” symbol highlighting the community and calling on elected officials to listen to “what they need and respond accordingly,” said Chris Kocher, the executive director of COVID Survivors for Change.

“We really wanted to show the strength and power of the movement by taking action in all 50 states and communities all across the country to highlight just how many people have had their lives devastated by COVID and how important it is that we need our government to continue to step up and take action to support all those who have been impacted by COVID,” Kocher said.

The effort follows a temporary memorial that was erected on the National Mall last month, with one white flag representing every COVID-19 death in the U.S. Sunday is the last day of the memorial "In America: Remember."

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Reuters reported that the U.S. exceeded 700,000 coronavirus deaths on Friday.

Rock Island, Ill., resident Jennifer Johnson, who has suffered from long COVID-19 for seven months, set up her chair to be photographed with medical equipment, a cane and medications that she now needs to use.

“It's one thing to see a chair with nobody in it, but then it's a whole different experience to have to see what people are dealing with on a daily basis,” she told The Hill.

Johnson, a 46-year-old single parent of two teenagers, said she has six providers for her various symptoms, including inflammation, muscle weakness, decreased lung capacity and memory problems. She said that immediately following a suspected stroke two months ago, “I couldn’t tell you my name.”

But she is worried about the financial costs of her extensive health care needs as “a full-time employee” who is “not able to work full-time” and expects to lose “significant income.”

“I don’t want to be carried financially for the rest of my life,” she said. “I want to work, I want to be productive. But this just isn’t a work issue. This is an entire quality of life issue.”

McNulty of Niskayuna, N.Y., has characterized long-haulers like herself as “a new breed of survivors” and launched Covid Wellness Clinic that’s dedicated to helping long COVID-19 patients. 

The 48-year-old long-hauler contracted COVID-19 in March 2020 and ended up hospitalized for 69 days, including 30 days in a medically induced coma. She spent months relearning to eat, walk and talk and has returned to the emergency room four times due to long COVID-19 symptoms.

McNulty is requesting “significant” and “dedicated” funding for long-haulers, although she said she worries that money will funnel to “people that don’t need it.”

“We demand more care for us because we're being forgotten,” she said.

As part of the week of action, certain delegations of COVID Survivors for Change are also planning to rally with teachers to back safe school reopenings, write letters to the editors of their local newspapers and set up and request memorials for COVID-19 victims, including long-haulers.

Junction City, Kan., resident Mary Snipes, 52, said she will send letters and emails to state elected officials this week calling for them to collaborate and spread more awareness about the potential outcomes of COVID-19.

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Snipes, who was hospitalized for COVID-19 in December for almost two weeks, still uses oxygen to breath and has endured chest pain, headaches, brain fog, joint pain and high blood pressure.

“It gets frustrating because I am a type of person that would go, go, go, go,” she said.  “And now it's like I am at a standstill because I am so weak and fatigued and just [have] no energy.”

Doctors and scientists have been perplexed by the conditions of long COVID-19 as it’s developed throughout the pandemic. They’ve conducted research attempting to determine how often it occurs among COVID-19 patients, with a recent study saying 37 percent had at least one long-term symptom three to six months after infection, suggesting millions nationwide could have long COVID-19.

The National Institutes of Health announced last month that it dedicated almost $470 million to develop a national study population to investigate the long-term effects of the virus, with the hope of recruiting between 30,000 and 40,000 participants.

David Putrino, director of rehabilitation innovation for the Mount Sinai Health System, said it’s been “really challenging” as his clinic has cared for almost 1,600 long-haul patients throughout the pandemic. In a survey of patients, 60 percent said they had a change in employment status due to their symptoms.

“We're doing our best to manage their symptoms and provide good evidence-based care,” Putrino said. “But obviously with a novel condition, evidence-based care is tough. And obviously it's also just not easy to provide reassurance when you can't say in good faith that you know precisely what's happening to a patient.”

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Janna Friedly, the medical director of University of Washington Medicine’s post-COVID-19 Rehabilitation and Recovery clinic, said she supports more government support for long-haulers as they deal with an “increasing burden” of costs. 

Friedly, who previously experienced long COVID-19 symptoms for nine months, said the clinic “desperately” needs more resources to care for patients, especially those with 10 or more different symptoms who require multiple specialists.

“I think we're just starting to really scratch the surface in understanding the financial and economic impact of long COVID on patients themselves, but also on the health care system and in the workforce,” she said.