COVID-19 long-haulers and advocates are stepping up their appeals to state and federal officials to take action and dedicate funding to those who suffer the mysterious syndrome that stems from the novel coronavirus and its variants.

Latest Initiatives

On October 1, the grassroots, non-partisan group COVID Survivors for Change launched a week of action, with delegations from all 50 states participating to illustrate how the virus has impacted the lives of long-haulers and the family members who have lost loved ones.

The delegates planned to photograph empty chairs to represent both those who have died from COVID-19 and the long-haulers whose debilitating symptoms persist. Chris Kocher, executive director of COVID Survivors for Change, said that the chairs were meant to serve as a “powerful” symbol that will galvanize elected officials to action, to listen to “what [long-haulers] need, and respond accordingly.”

Advocates plan to contact elected officials with requests that range from direct funding for long-haul patients to an investigation into how hundreds of thousands of deaths and millions of long COVID-19 cases were enabled in the U.S. Certain delegations also planned to rally with teachers in support of safe school reopenings, write letters to their local newspaper editors, and establish memorials for COVID-19 victims. The initiative springs from a temporary memorial erected on the National Mall in September, consisting of one white flag representing each COVID-19 death in the U.S. 

The Ongoing Frustration of Both Patients and Providers

Though many long-haulers feel as though they’ve been “abandoned” by the government, the truth is that millions of dollars have already been spent on accelerated care efforts. Research has been proceeding at a feverish pace, and the National Institutes of Health have recently committed nearly $470 million additional dollars to develop an extensive national study to investigate the long-term effects of the SARS-CoV-2 virus and generate innovative ways to address them. This doesn’t mean, however,  that patients’ fear and frustration aren’t real or valid or that healthcare professionals are immune to the increasing pressure to provide answers and care.

David Putrino, director of rehabilitation innovation for the Mount Sinai Health System, said it’s been “really challenging” to care for the nearly 1,600 long-haul patients who have passed through his clinic so far. “We’re doing our best to manage their symptoms and provide good evidence-based care, but obviously with a novel condition, evidence-based care is tough,” he said. “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.”

Janna Friedly, medical director of the University of Washington Medicine’s post-COVID-19 Rehabilitation and Recovery clinic, said she supports more government support for long-haulers. Friedly, who dealt with her own long COVID-19 symptoms for nine months, said the clinic “desperately” needs more resources to care for patients, some of whom struggle with ten or more symptoms, requiring multiple specialists. “I think we’re just starting to really scratch the surface in understanding the financial and economic impact of long COVID,” she said.

*Coleman, J. (2021, Oct. 3). COVID-19 Long-Haulers Plead for Government Action. The Hill. https://thehill.com/policy/healthcare/574984-covid-19-long-haulers-plead-for-government-action 

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.