Long Covid could become a mass disabling event. Congress has it on the back burner.
Now, he stresses to fellow lawmakers and top Biden officials that he’s spent two years feeling “as if every nerve ending in my body has had five cups of coffee.”
“I can feel every nerve ending right now as I’m talking to you,” he told POLITICO. “It’s just kind of a tingling in my veins all the time.”
Sitting behind an expansive wooden desk strewn with papers in his Capitol Hill office earlier this year, the walls behind him covered in framed photos, signed bills and Virginia memorabilia up to the high ceiling, Kaine said he was at first hesitant to speak about his condition because his symptoms are relatively mild compared to those of many people around the country who are debilitated physically, mentally or both by Covid-19.
“I probably wouldn’t have even shared my story publicly except that so many people I represent were reporting that they weren’t being believed and that they felt frustrated that nothing was going on,” he said. “Now I can tell them that not only are there people up here who believe you but we are doing stuff.”
But after months of efforts, Kaine’s experience sounds a lot like his constituents’: a frustrating and so far fruitless exercise. While he and other Democrats in the House and Senate are pushing for action, they have failed to gain meaningful momentum due to lack of GOP support and a congressional leadership bogged down in battles around spending, inflation, foreign policy and reproductive rights.
And as action on Capitol Hill stalls, the problem grows.
Recent CDC data found that nearly one in five people who have been infected with Covid-19 have some form of long Covid, including tens of millions of working-age adults, contributing to the current labor shortage in many sectors. Symptoms can range from loss of smell to breathing problems to debilitating fatigue and even death.
The crisis’ economic toll is also mounting thanks to a combination of lost tax revenue from people with long Covid unable to work and their high medical costs, forming a $2.6 trillion hit to the federal budget, according to Harvard Economics professor David Cutler, a former senior health care adviser to President Barack Obama. Experts warn this is likely to worsen as the virus resurges, infecting more people for the first, second or third time and putting them at higher risk of developing long Covid.
“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,” said Rep. Ayanna Pressley (D-Mass.), the lead sponsor of one stalled long Covid bill. “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.”
Democrats have introduced several bills to improve research and access to treatment for long Covid. So far, none have support from Republicans, who have raised a number of objections, including the difficulty of diagnosing and defining long Covid, more important issues need to be tackled and new economic aid programs can lead to fraud and abuse. In the House, the bills have yet to get a hearing or markup. In the Senate, some long Covid provisions were tucked into the pandemic preparedness bill that has seen no movement since it was passed out of committee in March.
Asked what’s happening now with the pandemic preparedness bill, the committee’s top Republican Sen. Richard Burr (R-N.C.) deadpanned: “Nothing.”
Some funding for studying and treating long Covid was included in the House versions of the Labor-Health spending bill and the National Defense Authorization Act, the latter of which passed the lower chamber in July, but their Senate path remains uncertain.
Meanwhile, provisions in the House’s Build Back Better package aimed at addressing the needs of the growing long Covid community — from universal paid sick leave to an expansion of Medicaid for millions of low-income people in red and purple states — were stripped out of the Senate version after Sen. Joe Manchin (D-W.Va.) demanded the bill be pared down at the end of last year. They were not added back when Manchin agreed in July to include some other dropped line items, including tax and climate measures.
At a House hearing on long Covid in late July, Democrats read out loud a personal statement Kaine had submitted describing his experience and pleading with fellow lawmakers to act. Only one Republican showed up — former emergency physician Mark Green (R-Tenn.) — who used his opening statement and question time to call for ending the federal public health emergency for Covid-19 and allowing states to more quickly purge Medicaid beneficiaries from their rolls. He also questioned whether the Covid-19 virus causes long Covid.
“Correlation is not causation,” he said. “We can’t assume something else isn’t going on.”
Congress did give the National Institutes of Health a little over $1 billion to study long Covid last year but has taken little action since. Patients struggling with lingering symptoms who have formed advocacy groups to press Congress for a meaningful response say it’s been woefully inadequate.
“So far, it’s basically been just gestures — Congress saying: ‘We hear you. We want to help you,’” said Karyn Bischof, a former firefighter and paramedic who lost her job after developing long Covid and is now working with patient advocacy groups. “Research is important, but we have to be able to survive to see what that research produces. How do we afford our medications and our homes in the interim?”
In meetings behind closed doors and in public hearings over the last year, doctors, academic experts and patient advocates with long Covid have repeatedly laid out a series of demands for Congress to address the mounting crisis from several angles. They’ve been met, largely, with a collective shrug.
The asks include re-upping the expired funding for free Covid testing, vaccines and treatment for the uninsured to prevent people from joining the ranks of the Covid long haulers, mandating paid sick leave so people aren’t forced to go to work while still ill and risk spreading the virus to others, and reforming the Social Security Disability Program so it’s easier for long Covid sufferers to qualify. Advocates also want Congress to exempt long Covid patients who can no longer work from penalties for withdrawing money early from their retirement accounts — as other people with disabilities currently can.
Congress can also give health and labor agencies more funding to enforce existing laws if passing new ones proves impossible, advocates argue. For example, the Biden administration has announced that long Covid should be considered a disability under the Americans with Disabilities Act. But there are widespread reports that many employers refuse to provide accommodations like flexible work schedules, remote work, or designated resting rooms.
During a July hearing before the House Select Subcommittee on the Coronavirus Crisis, Hannah Davis, the co-founder of the Patient-Led Research Collaborative and a long Covid patient, warned that, without swift action from lawmakers, “long Covid will destroy our economy and disable a huge percentage of our society.”
“We need an urgent public information campaign on long Covid to explain that it happens after mild cases and to all ages,” she told the House members.
More than anything, she added, “we need to provide financial assistance to the millions of long haulers unable to pay their daily costs of living, let alone medical care.”
But that, Kaine has found, is the toughest sell to his colleagues.
“My experience here over nine years is that research funding is very bipartisan. But when you get into how you determine whether someone is disabled and how we provide support to them — that might be a fight,” he said. “With that, we tend to get into tougher politics around deficits. I don’t think it’s because it’s not a priority — it’s more like ‘the deficit is too high, so we can’t do that.’”
Democrats dramatically scaled back their policy ambitions over the past year in the face of complaints from nearly all Republicans and a handful of more conservative Democrats that additional government spending could worsen inflation and balloon the federal deficit. The health provisions of their once-sweeping, nearly $2 trillion Build Back Better package that aimed to remake the social safety net and permanently lock in an array of benefits are now set to tackle only drug pricing and Affordable Care Act premiums.
Advocates’ arguments that helping long Covid patients recover and secure accommodations will be cheaper in the long run than letting them drop out of the workforce are failing to resonate on Capitol Hill.
“I’m not badmouthing our leadership because they have a lot on their plate,” Rep. Don Beyer (D-Va.) said. Beyer is the author of a stalled bill to expand treatment options for long Covid patients regardless of their insurance status. “But the status, sadly, is that there’s a lack of a sense of urgency that we need.”
While Kaine and others said they’re still hopeful they can get some long Covid provisions and funding into the government spending bills Congress is trying to cobble together by the end of the year, they will likely face even greater headwinds — as those budget bills have to pass with both Republican and Democratic support.
“Everything is moving at a glacial pace, and I can’t tell whether it’s Republicans’ unwillingness to take this on as an issue or Democrats’ unwillingness to push this as a priority,” said Diana Berrent, a long Covid patient and founder of the advocacy group Survivor Corps. “But whatever the game is, it’s not benefiting patients.“
The Biden administration this week announced the creation of a new office within the Health Department focusing on long Covid — led by Assistant Secretary Rachel Levine — and a National Research Action Plan on Long COVID that will focus on “advancing prevention, diagnosis, treatment, and provision of services.” But without funding from Capitol Hill, it’s unclear how these efforts will be staffed and sustained.
And with Congress set to break in the coming weeks for a lengthy recess, senior Republicans told POLITICO the issue is not at the top of their to-do list.
“I’m not engaged in those discussions and I’m not taking a position on those discussions,” said Mike Crapo (R-Idaho.), the top Republican on the Senate Finance Committee.
“I have other priorities. We’re handling all we can right now,” Sen. Jim Inhofe (R-Okla.) said, adding that long Covid is “not that well defined” and arguing that “there’s no way to determine how many people are affected.”
Other Republicans went further, saying they oppose setting up the kind of programs to support people with long Covid that advocates and experts call for.
“Nobody can even diagnose long Covid,” Burr told POLITICO, suggesting that any financial aid program for the chronic disease would be ripe for fraud.
“I’m sure they wouldn’t cheat on that, would they?” he said sarcastically. “So I wouldn’t know how you would apply.”
At the recent House hearing where Green was the sole representative of his party, he argued that long Covid is “not an appropriate justification for an extension of the public health emergency” and called for unwinding what remains of the government’s efforts to combat Covid-19.
“Covid is now endemic and we need to treat it as such. Much of America has long since accepted that reality,” he said. “It’s time for the nation to return to normal.”
Long Covid advocates who have tried for months to recruit Republicans to their cause say they’ve run into a similar mix of disinterest and opposition. That’s raising fears in the community that with the GOP predicted to win back control of one or more chambers of Congress in November, the window for action is rapidly closing.
“It’s been silence — crickets. We’ve not gotten any response from any Republican,” Bischof said. “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.”
In the face of this opposition, Kaine keeps plugging away with both Republicans and his own Democratic leadership and insists a breakthrough remains possible.
Then again, he acknowledged with a wry laugh, “I’m overly optimistic about everything, and I continually get cold water thrown in my face.”