Thursday, April 24, 2025
This month marks five years since Covid-19 upended our world
According to the Centers for Disease Control and Prevention, over 1.2 million Americans died from the virus, including 86,000 New Yorkers. While life has largely returned to normal for many, an estimated 23 million Americans — 1 in 15 — and hundreds of millions more people around the globe remain trapped in a Covid nightmare.
They are suffering from post-acute sequelae of SARS-CoV-2, or PASC, better known as long Covid. With no official definition, diagnostic tests, identifiable biomarkers, effective treatments or certainty of its causes, long Covid encompasses 200-plus symptoms appearing or persisting more than 12 weeks after a coronavirus infection.
Common symptoms often differ from those of acute Covid, and include debilitating fatigue, cognitive dysfunction, dysautonomia, post-exertion malaise, gastrointestinal issues, tachycardia, myalgia, neuropathy and breathing difficulties. No organ system is spared. Many “long haulers” have battled these health challenges for as long as five years, with no end in sight, and each combination of symptoms is unique and can change daily.
Benign-sounding terminology — fatigue, “brain fog,” “post-exertion malaise,” and even the name, long Covid — belie the condition’s severity. Millions of long haulers can’t work or even leave their beds.
Many struggle to find words while speaking, or to remember recent events. Their skin burns, and their blood pressure fluctuates dangerously even when they’re sitting still.
Importantly, even mild or asymptomatic Covid infections can trigger long Covid, with each new infection increasing the risk. Some medical experts believe that almost all Americans will eventually experience some degree of the disorder. The healthiest people aren’t immune: Professional athletes have been forced to retire, and some marathon runners can now barely walk.
Without an official definition of long Covid, long haulers struggle to access Medicare, unemployment, disability and private insurance benefits when they need them most. Medical bills not covered by insurance can mount into the hundreds of thousands of dollars for a single patient.
Last Saturday’s International Long Covid Awareness Day highlighted the disorder’s devastating human toll. Children missing their formative years, and single parents unable to support their families, are just a few examples. Here on Long Island, 200,000 people are estimated to have the chronic and debilitating condition. Tragically, excruciating pain and seemingly insurmountable hardships have led an increasing number of long haulers to take their own lives rather than continue to suffer as shells of their former selves.
And long Covid isn’t just a sobering health issue. Harvard University economist David Cutler estimates that it will cost the U.S. economy more than $3.7 trillion in earnings, medical expenses and quality of life. That’s equivalent to 12 percent of an entire year of U.S. GDP.
Our national security is also at risk, with an estimated 200,000 military personnel affected. Fatigue and physical limitations can render troops unable to fight, while cognitive issues may compromise critical decision-making and intelligence analysis.
In a rare show of unity, elected officials from both sides of the aisle, as well as scientists, doctors and policy experts, agree: America is failing the long Covid community.
Although the federal government provided $1.6 billion to the National Institutes of Health for research, those funds were wasted on an observational study rather than being used for clinical trials. Promising therapeutics remain unexplored due to funding gaps and bureaucratic obstacles, and no clinical trials got underway until just a few months ago — years after the start of the pandemic.
But Congress might be positioned to act. The Senate Committee on Health, Education, Labor and Pensions — the chamber’s health care panel — has members who are intimately familiar with long Covid. Sen. Tim Kaine, a Virginia Democrat, has long Covid, and Roger Marshall, a Kansas Republican and a doctor, has a close family member with the condition. At a January 2024 committee hearing, senators from both parties expressed frustration with federal efforts to find a cure.
Marshall described taking his loved one to dozens of doctors, consulting 80 additional doctors, speaking to other senators with the condition and reading extensively about it. He said he was beyond frustrated by the experience, as are many long haulers, who have seen scores of doctors — sometimes over 100 — in the hope of finding relief. Specialists, though, can have two-year waitlists, and many health care professionals remain unfamiliar with long Covid, which often leads to medical gaslighting.
The long Covid community needs help immediately. Government must provide funding and cut red tape to develop effective drugs, educate medical professionals, improve patient care coordination, authorize novel uses of existing therapeutics, streamline access to insurance benefits, accelerate time to market of new treatments, research biological causes, and support caregivers.
We hope the new administration, including President Trump and Health and Human Services Secretary Robert F. Kennedy Jr., will take action commensurate with this growing crisis.
