When Virginia Sen. Tim Kaine came down with a “blizzard” of allergy-like symptoms in March 2020, he blamed the layer of pollen coating his car. “It was Washington, D.C., in late March,” he says. I thought, “‘Okay, well, this is hay fever gone wild.’”
Only when his wife, Anne Holton, developed “textbook” COVID-19 symptoms did Kaine start to wonder if he might have the new virus, the subject of the massive economic assistance bill—the CARES Act—that he and other lawmakers were then working to pass. Testing at that time was hard to come by, even for Hillary Clinton’s 2016 running mate, but antibody tests later revealed that Kaine and Holton had been infected by the virus that causes COVID-19.
While his wife’s symptoms resolved within a couple weeks, Kaine is still feeling the effects of his infection more than two years later. Kaine says he experiences near-constant nerve tingling, like “every nerve ending has had five cups of coffee,” as well as intermittent hot sensations on his skin. In a more recent development, everything he eats now tastes both a little metallic and a little sweet—the latter, he jokes, is appropriate for an optimist.
The experience has been trying, even with his sunny outlook. Like millions of other people in the U.S., Kaine has Long COVID, the name for coronavirus-related symptoms that last months or even years. More than 200 symptoms have been linked to Long COVID, but some of the most common include fatigue, brain fog, chronic pain, and neurological issues like Kaine’s. He is the first to admit he has a mild case, one that doesn’t interfere with his ability to work, exercise, or live his life. But speaking with long-haulers who have more serious cases—some bedridden by their symptoms—has hardened Kaine’s resolve to fight for support for the complex and little-understood condition in Washington. “Just having this does connect me with more painful and difficult realities that a lot of people are dealing with,” Kaine tells TIME.
In March, along with Democratic colleagues Massachusetts Sen. Ed Markey and Illinois Sen. Tammy Duckworth, Kaine introduced a bill with several key aims: accelerating and funding research into Long COVID; educating the public, doctors, educators, and employers about the condition; and improving societal support for people with Long COVID, including those unable to work. “Even if COVID-19 disappeared tomorrow, millions of Americans who contracted this disease—including people of color who continue to bear the brunt of this pandemic—would continue to suffer from long COVID,” Duckworth said in a statement provided to TIME. “A holistic approach to treatment is absolutely necessary, particularly for those communities who face the harshest barriers to obtaining healthcare.”
Congress has already given the National Institutes of Health more than $1 billion for Long COVID research, but Kaine says passing the bill would ensure that funding doesn’t dry up in the future. After it was introduced in March, the bill was referred to the Senate Committee on Health, Education, Labor, and Pensions, of which Kaine is a member; it has not yet come up for a vote on the Senate floor.
In the meantime, Kaine has vowed to keep Long COVID on the radar of top public-health officials, including U.S. Centers for Disease Control and Prevention director Dr. Rochelle Walensky and White House medical adviser Dr. Anthony Fauci. At times the acute emergency of the pandemic has eclipsed the quieter but equally important crisis of Long COVID, Kaine says. That’s something he’s working to fix. “Whenever we have a health hearing and Fauci and Walensky are there, they know I’m going to ask them, ‘What’s going on with the research?’” he says. Also on the to-do list, Kaine says, is gathering more data about long-haulers’ experiences with the Social Security disability benefits system.
Kaine is already helping through his decision to speak publicly about his own case of Long COVID, says Diana Berrent, founder of COVID-19 patient support group Survivor Corps and one of the country’s most outspoken advocates for long-haulers. “Senator Kaine deserves real credit for sharing his personal story,” Berrent wrote in an email to TIME. “It was a brave thing for Kaine to do, especially while recognizing his experience is but a shadow of others’.”
Statistically speaking, there are likely other prominent figures who have Long COVID but haven’t chosen to talk about it. Researchers estimate that between 10% and 30% of people who catch COVID-19 will develop lingering symptoms of some kind, though being fully vaccinated reduces that risk substantially. Given the many politicians, entertainers, and athletes who have tested positive for the virus, it stands to reason that at least some of them are privately living with Long COVID.
Kaine won’t name names, but he says he’s been approached by at least one “person of importance” in Washington who has Long COVID but doesn’t feel comfortable talking about it. “The person said, ‘You can talk about having nerve tingling. I can’t talk about brain fog and confusion, doing what I do….People would be nice to me, but they might not entrust me with the things they entrust me with now,’” Kaine says.
That isn’t only a problem on Capitol Hill. Many long-haulers have been forced to step away from fulfilling careers or scale back hobbies and commitments. Others have struggled to convince doctors and loved ones that their symptoms are real and worthy of treatment. And some have been unable to receive government benefits or aid because their symptoms are amorphous and difficult to categorize. Advocates hope public conversation and acceptance could go a long way toward easing the stigma, not only for long-haulers but also for people who suffer from other complex chronic conditions like myalgic encephalomyelitis/chronic fatigue syndrome and chronic Lyme disease.
Lately, Kaine’s been thinking a lot about the future. He hadn’t, he says, until a reporter asked if he expected to have Long COVID forever. “I hadn’t really thought about it because I hadn’t really wanted to think about it,” he admits.
Now, though, he’s come to an uneasy truce with the idea that his neurologic symptoms may never fade. That both scares and motivates him, he says. Permanent Long COVID is one thing for someone like Kaine, a 64-year-old man with means and power and mild symptoms. “But what if I was a 35-year-old with a whole life of child-raising and career ahead of me?” he says. “The not-knowing is almost worse than dealing with the symptoms today….I’ve got to give [other long-haulers] an answer.”
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Contributor: Jamie Ducharme