Advocates Call for Urgent Action as Long COVID Patients Testify on Capitol Hill
More than a year after catching COVID-19, Sawyer Blatz still can’t practice his weekly rituals: running for miles in San Francisco’s Golden Gate Park or biking around his adopted hometown. In many ways, the pandemic isn’t over for the 27-year-old and millions of other Americans. It may never be. They have long COVID, a condition characterized by any combination of 200 different lingering symptoms, some of which, like loss of taste and smell are familiar from initial infections and some totally alien, like the utter exhaustion that makes it impossible for Blatz to walk much more than a block.
“I feel homesick for my own city,” said Blatz, a laid-off software engineer who now uses his limited energy to advocate for long COVID patients.
Federal estimates suggest at least 16 million Americans have long COVID and maybe 4 million of them, like Blatz, who contracted his only COVID infection in November 2022, are disabled by it. Along with other patient advocates and doctors, Blatz says the pace of government-funded research has been too slow and too small to address a problem of this magnitude. Many with long COVID have been left with debilitating conditions with no benefits yet seen from hundreds of millions of tax dollars poured into understanding and treating the chronic disease. As Blatz puts it, there are still “zero” proven treatments for people like him.
“The urgency and finances are not meeting the moment,” said Blatz, who has tried more than 50 medications, supplements and exercise regimens over the last year to no avail and who co-founded a group called Long COVID Moonshot to channel “this grief over my life being ruined.”
New research is published nearly every week, including recent studies showing that vaccines can reduce the risk of developing long COVID, that inflammation can disrupt the normal barrier between the brain and the rest of the body, causing brain fog, and that there are identifiable changes in the muscles of some people with long COVID, which could explain why exercise wears them out rather than making them stronger.
The complexity of both the disease and the drug development system, not to mention the difficulty of getting doctors to believe them and insurance to pay for visits, has left long COVID patients feeling alone and adrift. Americans are paying a price. According to a 2022 analysis, long COVID costs the American economy at least $200 billion a year because of lost productivity, lost wages, and medical costs. And it’s not going to go away without a lot more attention, said David Putrino, who directs Rehabilitation Innovation at Mount Sinai Health System.
“It’s a problem we need to rapidly and aggressively address, otherwise we’re all going to pay for it,” he said.
In a paper in the journal Science published last week, researchers argue long COVID provides a historic opportunity to rethink acute chronic diseases that result from many infections and to prepare for future pandemics.
“This really needs to be an all-hands-on-deck situation,” Dr. Ziyad Al-Aly, an author of the paper, told USA TODAY. “A bolder approach is needed.”
The government is taking a systematic, comprehensive approach
Congress allocated $1.2 billion in late 2020 to study long COVID and begin to develop treatments. Nearly 90,000 adults and children joined studies launched last year testing 13 interventions ranging from drugs like the antiviral Paxlovid, to sleep aids, physical therapy, and medical devices. Earlier this month, it directed another $500 million over the next four years into the Researching COVID to Enhance Recovery (RECOVER) Initiative, whose mission is “taking a systematic, comprehensive and rigorous approach to improve our understanding of Long COVID and increase the odds of identifying treatments that work.”
The additional money, redirected from a public health reserve fund, will enable more treatment studies, as well as more in-depth research to better understand what’s causing patients’ symptoms, Dr. Gary Gibbons, co-chair of RECOVER, told USA TODAY. Rather than moving slowly, Gibbons said the federal government is committed to helping patients and is working as quickly as responsible science will allow. Anyone who doesn’t see that either doesn’t understand the scientific process or doesn’t know what’s going on behind the scenes, much of which the federal government isn’t at liberty to make public because of negotiations with drug companies, he said.
“We all want to move with a sense of urgency to what works, but it’s really important that it be definitive, and that we get it right,” Gibbons said. “So that’s why we want to do this systematically, in accordance with the norms of rigorous science.”
Advocates say more needs to happen faster
Still, long COVID advocates see the federal effort as anemic, inflexible, and slow. “The current approach is wholly unsatisfactory,” said Al-Aly, chief of research and development at
