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.
Even with his optimistic outlook, the experience was difficult. Kaine suffers from Long COVID. It is a term that refers to coronavirus-related symptoms lasting 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.
Kaine and Democratic co-sponsors Massachusetts Sen. Ed Markey (Illinois Sen. Tammy Duckworth) introduced a bill that had several main goals. These included funding long COVID research, education and support of doctors and educators about this condition, as well as funding additional Long COVID research. “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. The bill was presented in March to the Senate Committee on Health, Education, Labor and Pensions. It has yet to be voted on the Senate Floor.
Kaine has vowed, in the interim, to keep Long CoVID under the watchful eye of senior public-health officials including Dr. Rochelle Walensky (U.S. Centers for Disease Control and Prevention) and Dr. Anthony Fauci (White House medical adviser). Kaine states that sometimes the urgent pandemic crisis has overshadowed Long COVID’s more important, but quieter, needs. 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. The risk of developing lingering symptoms is between 10 and 30 percent for people with COVID-19, according to researchers. However being fully immunized reduces the likelihood of this happening. It is likely that some people with Long COVID are private citizens, as evidenced by the number of politicians, athletes, and entertainers who tested positive.
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 people who have worked for long periods of time were forced to quit fulfilling their careers, or cut back on hobbies and other commitments. Some have had to fight with loved ones and doctors to prove that the symptoms they are experiencing is real and worth treatment. Some people have not been eligible for government assistance or benefits because they are too complex and difficult to classify. 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. This both scares as well as motivates him. A 64-year old man, Kaine with his means and power as well as mild symptoms, can have permanent COVID. “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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