As nation moves on from COVID-19, it can’t leave long haulers behind
Before we even began winding down from one pandemic, another had already begun. We weren’t ready. We still aren’t.
COVID-19 is no longer a global health emergency, according to the World Health Organization. But for millions of Americans, myself included, who continue to live with the sometimes debilitating effects of long COVID — symptoms that last for weeks, months, or even years after a COVID infection — the end is nowhere in sight.
And to put it bluntly, the government has failed to do enough, especially for those unable to access necessary care on their own.
“We have to prioritize those who are most vulnerable when it comes to access to long COVID care,” Representative Ayanna Pressley told me in an interview. She, along with Representatives Don Beyer of Virginia and Lisa Blunt Rochester of Delaware, reintroduced a bill that would create the first federal program dedicated to expanding treatment for long COVID patients and training for health care providers.
The Targeting Resources for Equitable Access to Treatment for Long COVID (TREAT Long COVID) bill, set to be introduced Thursday, would authorize the Department of Health and Human Services to award grants of up to $2 million to health care providers, including in community health centers and rural health clinics, to give specialized support to long COVID patients.
It also would boost funding for long COVID multidisciplinary clinics that provide both mental and physical long COVID care.
It would prohibit the denial of service based on a lack of health insurance, the date or method of diagnosis, preexisting conditions, or previous hospitalizations. And it would also incentivize ongoing training for physicians and other health care providers as new research into the causes and treatment for long-haul patients continues to emerge.
“These clinics will be staffed by people who are trained to understand the complexities of long COVID,” Pressley said.
Pressley, a Democrat from Boston, told me the bill stemmed from conversations with constituents, many in underserved communities, who sought care for lingering symptoms that negatively impacted their lives, only to be turned away or disbelieved. After convening roundtables on long COVID, Pressley said, it was clear that “they didn’t have a champion.”
“That added insult to the injury they were already suffering,” Pressley said.
The need is dire for the estimated 1 in 5 COVID patients whose symptoms linger long after their infection. A study published in January by the New York State Insurance Fund found that 71 percent of those classified as long COVID sufferers either required continuing medical treatment or were unable to work for six months or more.
And this is likely an undercount, failing to capture the number of people who have been unable to access treatment, could not afford treatment, or continued to work through their illness for fear of losing their job and livelihood.
Long COVID also hits women and older people hardest, according to a Harvard study published in March. And it increases the risk of developing other chronic conditions, like heart disease, asthma, and diabetes.
But a crucial thing that the legislation addresses is the fact that getting treatment for long COVID is, in itself, an ordeal. Even for someone like me — a long COVID sufferer lucky enough to have great health care coverage, strong support from my employers, and proximity to some of the world’s best medical facilities — finding care was hard.
I reached out to long COVID clinics to find that some had closed, while others had monthslong wait-lists to get an appointment.
My care had to come a la carte, and I know I am among a tiny fraction of Americans privileged enough to get it that way. I saw a headache specialist for my debilitating pain and inability to concentrate. My dermatologist helped relieve the stinging itch of the full-body rash COVID left behind. And I’m still waiting to see a gastroenterologist to treat my lingering digestive issues. As for the ongoing fatigue, I’m hoping time will continue to be a healer.
Having dedicated, multidisciplinary health facilities that meet all COVID long haulers where they are, and not simply those who live near the overloaded existing long COVID clinics that are clustered in and around major urban areas, is essential not only as a public health priority but also to bolster the economy, which has taken at least a $3.7 trillion hit from long COVID.
But more important, it is the right thing for the government to do. Yes, some strides have been made, including efforts by the Biden administration to boost long COVID care for veterans and increase clinical support for health care providers. Also, lawmakers including Pressley successfully pressed for $10 million in appropriations funding for research.
But if COVID taught us anything, it’s that turning a blind eye to a problem and hoping it will go away can have devastating consequences. The ongoing long COVID crisis won’t cure itself. We need our leaders to give us the right prescription.