For long COVID patients waiting for help from Congress: ‘It’s been silence – crickets’ 


August 23, 2022

U.S. Sen. Tim Kaine, it seems, is having trouble getting his colleagues to listen to him. 

The Virginia Democrat first contracted COVID-19 in March 2020, part of the first major wave of Americans to get the virus. Now, almost two and a half years later, he continues to exhibit symptoms. In his case, he suffers from nerve sensitivity, or a feeling “as if every nerve ending in my body has had five cups of coffee,” as he told Politico. 

Recently, Kaine began sharing his story with everyone who would listen, particularly fellow members of Congress. He hoped it would spur members to support stalled legislation that would help long COVID sufferers, both in terms of providing more money for research and treatment and providing direct benefits to patients, many of whom, unlike Kaine, are too debilitated to work. 

We still don’t know how many Americans have long COVID, but we do know the number is in the millions. The CDC estimates that one in five Americans who have gotten COVID-19 have long COVID; other studies estimate that it is more like one in eight. Symptoms of long COVID include, but are not limited to, fatigue, breathlessness and neurological problems that could resemble traumatic brain trauma. 

The Biden Administration estimates that 7.7 to 23 million Americans have developed long COVID and that at any given time, one million people may be missing from the U.S. workforce due to symptoms – amounting to $50 billion in lost earnings, to say nothing of a decrease in consumer spending and tax revenue. Earlier this month, the Biden Administration issued a national action plan that, among other things, addresses long COVID. 

The Biden plan states that long-term effects from long COVID are real, but are not yet fully known. It acknowledges that the economy and workplace could be significantly disrupted, and burdens on health care systems enormous – and it warns that not all of these effects would be felt equally, with people of color and people with low incomes bearing the brunt. “Pandemics such as influenza and polio resulted in long-term consequences that persisted for decades,” it notes. 

Eric J. Topol, a Professor of Molecular Medicine at Scripps Research, wrote in an op-ed in the Los Angeles Times that while 25 small studies of long COVID patients are underway, no one yet has launched a large enough study to adequately address treatment needs and that time is being wasted. 

“Too many people are indeed living with chronic COVID, detracting from their daily lives,” he wrote. “As we eventually emerge from this pandemic, long COVID will be the enduring, major public health complication that we failed to address in a timely and aggressive manner. It’s not too late to invest in understanding and combating it.” 

Meanwhile, Sen. Kaine keeps talking, sharing his story. But is anyone listening? 

Lack of action on long COVID is not surprising, since Congress has been stalled on any COVID-related funding for some time. It’s worth noting that daily new coronavirus cases are still averaging over 90,000, with about 40,000 hospitalized and over 450 dying every day. More funding will be needed to continue to provide updated vaccines and treatments, and to address the emerging long COVID problem. 

Long COVID sufferers and their advocates worry that little momentum in Congress exists. They would like to see Congress address the issue either through a COVID-19 supplemental measure that is stuck in the Senate or through the appropriations process later this year. 

Rep. Ayanna Pressley (D-MA) is the lead sponsor of a long COVID bill stuck in the House. “This is on the radar and on the minds of folks, but we haven’t yet had a federal response commensurate with the size of this community,” she told Politico. “It’s very possible, without federal intervention, that we are leaving these people behind, both in terms of a public health response and in terms of meeting their economic needs.” 

Funding for long COVID has been included in two different appropriations bills that have passed the House, but the path forward in the Senate is unclear. In addition, a House-passed version of the Build Back Better plan (that later became the Inflation Reduction Act when it moved through the Senate) originally included several measures that would have helped long COVID patients; those measures were stripped out of the slimmed-down Senate version. 

One of the problems facing long COVID patients is that some Republicans deny that long COVID exists or are unsure how to define it. Politico reports that at a House hearing on long COVID in late July, only one Republican showed up – Rep. Mark Green (R-TN), who called for ending the federal public health emergency for COVID-19 and allowing states to more quickly purge Medicaid recipients from state rolls. 

And, Politico notes, he also questioned whether COVID-19 causes long COVID. “Correlation is not causation,” he said. “We can’t assume something else isn’t going on.” 

Advocates fear that with mid-term elections approaching, and the possibility that control of one or both chambers could switch parties, time is running out. 

“It’s been silence – crickets. We’ve not gotten any response from any Republican,” said Karyn Bishof, a former firefighter and paramedic who lost her job after developing long COVID and now leads the COVID-19 Longhauler Advocacy Project. “There’s a concern that there’s a hard partisan line forming, and we’re not going to get anything for the rest of our lives.”