Over a million Americans are out of work because of long-COVID complications, and help is slow to come for those who need it. On January 10, 2022, with a strong call to action, the COVID-19 Longhauler Advocacy Project (C-19 LAP) sent an open letter to President Biden, members of Congress, and leaders of key governmental institutions urging them to address the mounting economic crisis in the U.S. on both an individual and national level.

What Is the COVID-19 Longhauler Advocacy Project?

The C-19 LAP was formed in June 2020 by four long-haulers (Karen Bishof, Dr. Ann E. Wallace, Lisa O’Brien, and Stephanie Gedgaudas) to raise awareness and advocate for the growing number of COVID-19 patients who experience residual symptoms and complications from their SARS-CoV-2 infections. Acknowledgment and support of these patients were grossly delayed, the group says, and while both were finally provided, neither is keeping up with the needs of the ever-increasing long-hauler community. 

The Numbers

Multiple sources report that between 10% and 30% of COVID-19 patients go on to become long-haulers, and the majority of those develop debilitating chronic conditions that affect their ability to work and support their families. 

In one survey of 496 long-haulers, the C-19 LAP found that:

• Forty-four percent of respondents said they couldn’t work at all
• Sixty-seven percent of those who can’t work have been out of work for over a year
• Five percent reported being able to work at full capacity
• Forty-eight percent said they are experiencing financial ruin
• Twenty-one percent said they’ve had to sell furniture, collectibles, and other valuables just to pay bills
• Twenty percent reported that they are completely out of resources
• Nine percent were single parents who were either long-haulers or caring for a long-hauler at home

“Millions need immediate assistance,” the authors wrote, and they proposed a way to provide it.

The Call to Action

The open letter proposes two steps for Biden and the U.S. federal government to take to avoid total “economic failure and devastation.” First, the letter calls for:

Interim Long-COVID Assistance Programs (LCAP) that:

• Provide financial assistance programs for COVID long-haulers, caretakers, and their minor children
• Apply all line-of-duty disability and death benefits to COVID long-haulers 
• Provide workers’ compensation and short- and long-term disability coverage
• End penalties on early retirement and Deferred Retirement Option Plan withdrawals
• Mandate continued healthcare coverage through patients’ employers
• Erase medical debt and waive co-pays and deductibles 
• Make long COVID eligible under Social Security Disability (SSD), Medicaid, food stamps, and housing assistance, and provide free legal help with applications
• Provide help paying utilities, water/sewage, phone/internet, and other household bills
• Erase credit card and loan debt, including interest and late fees, accumulated by COVID long-haulers from the date of infection

Second, the letter urges the establishment of a White House-Level Long-COVID Task Force (LCTF) to investigate, develop, and implement real-time and long-term programs to assist the long-COVID community. This task force would: 

• Be composed of patients, leading researchers, congressional and health agency representatives, and economic advisors
• Oversee programs to document and quantify the number of long-haulers over time
• Add questions about long COVID to the Bureau of Labor Statistics Current Population Survey 
• Analyze and address the health impacts of long COVID
• Create a long-COVID insurance program
• Help prioritize research by meeting with post-viral experts and long-COVID patients
• Create effective models for future Pandemic Preparedness Programs 
• Develop an outline that presents the funding needed for direct assistance to long-haulers
• Help oversee long-COVID / post-COVID care centers
• Advise health and government agencies from the long-COVID perspective
• Create a public awareness campaign that includes employers, teachers, and coaches

Lastly, the letter calls upon President Biden, government officials, and healthcare leaders to speak publicly to the American people about the potential long-term effects of contracting COVID-19, and the difficulties faced by people living with long COVID. 

*C-19 Longhauler Advocacy Project. (2022, Jan. 10). Take Action Now to Restore Quality of Life for Millions of Longhaulers & Their Families & Support Our Open Letter to National Leadership.    https://www.longhauler-advocacy.org/open-letter?utm_campaign=fd1d615a-12af-4f85-a053-c100d78fc588&utm_source=so&utm_medium=mail&cid=1b342cbf-6246-466a-a21b-0ebc55a465de 

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.