The Biden administration Tuesday announced a major effort to help people with long COVID-19, including providing insurance coverage, expanding support for clinics and enhancing research into the condition.
Long COVID-19 still lacks a formal definition, but is generally described as symptoms that linger more than one to three months after a COVID-19 infection. This includes people who had severe cases of disease and are still recovering months later, along with those who had milder infection but suffer paralyzing exhaustion, racing heartbeat, unending headaches, mood disorders, lingering loss of smell or other symptoms.
“We’re determined as a nation, as the president has said, to not leave anyone behind, and that includes our loved ones suffering from long COVID and related diseases,” Health and Human Services Secretary Xavier Becerra said at a White House briefing . “We’re committed to advancing our nation’s capacity to understand these conditions.”
There are no proven treatments for long COVID-19, in part because many different conditions likely fall under the same umbrella term. It’s unclear exactly how many people suffer from long COVID-19, but studies have found as many as 30% of people still have symptoms months after a COVID-19 infection.
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Biden issued a Presidential Memorandum directing the secretary of Health and Human Services to coordinate an interagency “national research action plan” on long COVID-19.
The effort builds on $1.15 billion allocated last year to an initiative called RECOVER, which aims to advance understanding of, treat and prevent long COVID-19. The research effort will now include 40,000 volunteers, some with long COVID-19, who will be followed over time.
The new proposal includes:
- Delivering high-quality care to people with long COVID-19, by supporting research into possible treatments and passing that learning across the country. The plan includes $20 million in the next fiscal year to investigate how health care systems can best organize and deliver care for people with long COVID-19.
- Expanding and supporting 18 long-COVID-19 clinics already established by the Veterans Administration, if Congress provides additional funding.
- Educating doctors and nurses about the condition and how to help patients
- Improving insurance coverage for people by requiring federal insurance programs to cover care.
- Considering long COVID-19 a potential cause of disability, which would entitle sufferers to protections under disability rights laws and providing affected students with educational support.
- Strengthening protections for workers with long COVID-19, allowing them to remain on the job or find a new one.
- Requesting $25 million in research funding to better understand long COVID-19.
Dr. Kristin Englund, an infectious disease physician who leads a long COVID-19 center at Cleveland Clinic, said she thinks the new plan could make a profound difference for her patients.
Recovering from long COVID-19 can be an extended process, she said, involving physical therapy, pulmonary rehabilitation, cognitive retraining and mental health support.
“Long treatment for a long disease,” she said.
The administration’s acknowledgement of the condition and its challenges is validating for patients who may hear from family members and friends that they just aren’t trying hard enough to to get back to normal.
“These are not people who are looking” for handouts, she said. “They are truly battling this.”
Englund said she’s seen top-level executives – with “Type AAA” personalities – who now struggle to concentrate, and former warehouse workers who simply can’t stand on their feet all day anymore.
She’s particularly grateful, she said, for the research funding and encouragement to collaborate across institutions.
“We’re still a long way from understanding what this is,” she said of long COVID-19.
And she appreciates the push to ensure care for those who might not otherwise have access to a top institution like the Cleveland Clinic.
“This recognition by the federal government also gives me the ability to go to the powers that be at my own institution and say ‘I need help and we need to be able to reach more people,'” she said.
Diana Berrent, founder of SurvivorCorps, a long-COVID-19 support group with 180,000 members said Tuesday’s proposal is the culmination of lobbying and effort and should make a profound difference in the lives of those with long COVID-19.
“This much-needed comprehensive approach, if effectively implemented, will ensure that no one is left behind,” Berrent said. “While it is overdue, the best time to correct the course of a runaway train is always now. There are too many lives and livelihoods in the balance to do anything but.
Ronald Rushing Sr., 47, of Southern Pines, North Carolina, who has had debilitating headaches and exhaustion since his mid-2020 infection with COVID-19, said he’s thrilled by the proposal.
“All that would be amazing,” said Rushing, who has been fighting with his insurance company for more than a year. “It’s been a long, hard 20 months for me and my family and countless others in the world.”
Contact Weintraub at kweintraub@usatoday.com.
Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.
