“Living through a mass disabling event”: Will Congress finally take long COVID patients seriously?
Over the last four years, Angela Meriquez Vázquez has faced a long list of health scares and conditions, any of which could have had a profound impact on her life individually. From mini-strokes to brain swelling to seizures to painful heart palpitations — not to mention severe shortness of breath, extreme confusion and numbness in her face — Vasquez didn’t start to experience these events until after she got infected with COVID-19 in March 2020.
Prior to the infection, Vázquez was a healthy runner for nearly 20 years. Today, she is on 12 different prescription medications, including weekly IV treatments at the hospital. She has a “strict pacing regimen” that allows her to work from home, but not much else.
“I do not socialize, or enjoy my old hobbies, and I don’t really leave my home, especially now that I am now considered high-risk,” Vázquez said in a hearing with the Senate Committee on Health, Education, Labor and Pensions, emphasizing that Congress needs to treat long-COVID like the crisis it is. “We are living through what is likely to be the largest mass disabling event in modern history.”
Vázquez was one of three long COVID patients who confronted Congress about the issue for the first time on Jan. 18 in Washington D.C.
Long COVID develops when symptoms of COVID don’t disappear, lasting anywhere from a few months to years. It is characterized by severe fatigue, brain fog and other neurological issues, palpitations and a range of other symptoms. The U.S. Department of Health and Human Services classifies the condition as a disability because of the physical and mental impairment it can cause.
“We are living through what is likely to be the largest mass disabling event in modern history.”
Despite public attitudes in the United States seemingly moving on from the pandemic, especially since the government ended its public health emergency declaration in May 2023, the threat of long COVID continues to loom. But the recent wave of infections, driven largely by the JN.1 variant, was the second biggest in the last four years of the pandemic, dwarfed only by the Omicron surge in early 2022.
As research has recently shown, people can still get long COVID after a coronavirus reinfection. Some studies have shown that subsequent COVID infections increase a person’s risk of getting long COVID. To date, long COVID has afflicted up to 23 million Americans while the Centers for Disease Control and Prevention (CDC) estimates 1 in 13 adults in the United States currently have long COVID symptoms. And it’s not just people who are considered to be “high-risk” for a severe COVID-19 infection, like those who are already immunocompromised, who are susceptible to long COVID.
“No one is safe from it,” Dr. Ziyad Al-Aly, chief of research and development at the VA St. Louis healthcare system who also testified at the hearing, told Salon. “And there is no treatment for it.”
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Recent research has shown that getting vaccinated can reduce the risk of developing long COVID. Specifically, it reduces the risk by 15 to 70 percent in adults, and it reduces the risk moderately in kids. Adolescents saw the greatest protective effect, particularly those who had a higher risk of long COVID, which waned over time.
“No one is safe from it. And there is no treatment for it.”
In Al-Aly’s testimony, he brought up that this isn’t the first time that a pandemic has left millions disabled. Acute infections can turn into chronic disabling disease. He noted that historical accounts of both the Russian flu and 1918 Spanish flu pandemic show that many people suffered from long-term health effects such as cognitive decline, debilitating fatigue and Parkinson’s disease after infections. Doctors now know that Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which affects 4.2 million Americans, is a debilitating multisystemic illness that is believed to be triggered by a flu-like illness.
Al-Aly told Salon in an interview he fears history is repeating itself. After a pandemic, there is a rush and eagerness to move on. He compared it to the aftermath of an earthquake.
“It doesn’t stop when the earth stops shaking,” he said. “Arguably, the aftermath of an earthquake is much more profoundly consequential than that.”
Long COVID, he said, is a “very serious health crisis” that the public and legislators have had a hard time acknowledging and supporting in part because it can appear to be an “invisible crisis.” Many people don’t physically appear to be struggling, he said. But functional exams reveal there are a lot of serious health problems going on internally. Al-Aly said many people with long COVID are missing school, social events and work, making the crisis less apparent in the public eye, too. It’s not like the housing crisis, which is visible on many street corners throughout the U.S. Even as many people unmask in public, long COVID patients are reluctant to risk re-exposure.
“The federal government can and should be doing more to support long COVID patients.”
It’s not just people that are taking a hit from long COVID, but also the economy. In January 2022, Brookings Institute estimated that 1.6 million full-time equivalent workers could be out of work due to the condition, leaving 10.6 million unfilled jobs. At the time of the analysis, researchers estimated that 16 million working-age Americans, those between the ages 18 and 65, had long COVID today. Of those, between two to four million were unable to work because of it. The estimated annual cost of those lost wages alone was around $170 billion a year.
Al-Aly said it’s a positive step forward that the hearing occurred in the first place. He told Salon he sensed that the panelists, like Sen. Bernie Sanders (I-VT), were “deeply engaged” and that the Senate hearing was a “historic day” for long COVID. Vázquez agreed that she believes the hearing went very well.
“I really appreciated Senator Sanders’ summary of the takeaway of the hearing, which was that the federal government can and should be doing more to support long COVID patients with research and social support,” Vázquez said. “Just given that statement from one of the ranking and most influential senators in Congress, that is a huge win for patients.”
But there’s room and a need for more urgent progress and solutions to be made. Vázquez told Salon she is grateful to have the “economic privilege” to pick up the slack where the government has failed other long COVID patients. She has an income that allows her to buy masks and a job that allows her to work from home.
“Most folks, low-income, working class people don’t have the privilege,” Vázquez said. “I would love to see more resources dedicated to social security disability benefits, as well as more investment in Medicaid services to identify and connect low-income long COVID patients to clinical care so that they can at least manage their condition and prevent them from deteriorating.”
Al-Aly said long COVID needs to be an urgent priority for the federal government. “We need a long term commitment,” he said. “And we need a coherent, coordinated approach to really solve the problem.”
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