WASHINGTON (AP) — Faced with the lingering shadow of the pandemic, President Joe Biden has ordered a new nationwide push for long-COVID research, while directing federal agencies to support patients battling the mysterious and debilitating disease. .
Biden on Tuesday tasked the Department of Health and Human Services with coordinating an urgent new initiative across federal agencies, building on research already underway at the National Institutes of Health.
He also called on federal agencies to support patients and physicians by providing science-based best practices for dealing with the long COVID, maintaining access to insurance coverage, and protecting the rights of workers facing the uncertainties of unrest. The effects on mental health are of particular concern.
Long COVID is the catch-all term for a hydra-headed condition whose symptoms can include brain fog, recurring shortness of breath, aches and fatigue. According to rough estimates, it affects up to 1 in 3 people who recover from COVID-19, although the severity and duration of symptoms vary. Despite extensive investigation, the causes of long COVID are not well understood, and treatment largely focuses on helping patients cope with their symptoms as they try to rebalance daily routines.
The White House has also acknowledged that the long COVID appears to be a liability, which means patients may be entitled to the protection of federal laws that prohibit discrimination based on health conditions and call for accommodations to allow people to lead a productive life.
“The administration recognizes that the COVID-19 pandemic has drawn new members into the disability community and has had a significant impact on people with disabilities,” a White House preview said.
Some independent experts praised the administration for its comprehensive plan, but noted the lack of a timeline for results.
“This is a very important move by the Biden administration to recognize that the long COVID is real, it is a significant threat, and there is still much more to do,” said Dr. Leana Wen, former Baltimore health commissioner. and pandemic commentator. “The focus on treating long COVIDs, and the recognition that this could be a source of ongoing disability, is long overdue.”
A prominent COVID patient advocate has sensed a breakthrough.
“This is the first effort that really meets the needs of people who are suffering,” said Diana Berrent, founder of Survivor Corps, a support group that connects patients with government and private researchers.
Supporters are calling for “the government to create a command center for the long COVID,” she added. “Until now, that didn’t exist.”
“I see this as a comprehensive, all-encompassing approach to an extremely thorny problem that has already received a scattered approach,” Berrent said.
So far, medical research has led to theories about the causes of long COVID, but not a single root. One theory revolves around lingering infection or virus remnants that can trigger inflammation in the body. Another possibility involves autoimmune system responses that mistakenly attack normal cells. Researchers are also studying the role of tiny clots.
The White House said Biden’s order would expand and build on a billion-dollar research study already underway at the NIH, called the RECOVER Initiative. One of the goals is to accelerate the enrollment of 40,000 people with and without long COVID into the study. Around this effort, Health and Human Services will coordinate a government-wide long COVID research plan.
HHS will also provide a report to the nation on long COVID later this year. “Millions of Americans could be struggling with lingering health effects,” HHS Secretary Xavier Becerra said. “COVID has effects long after the virus itself has eluded us.”
Biden’s order emphasizes treatment. An HHS unit called the Agency for Healthcare Research and Quality will investigate best practices and get helpful tips for doctors, hospitals and patients. The Department of Veterans Affairs, which already has 18 facilities running lengthy COVID programs, will serve as an incubator for ideas and strategies. The administration is asking Congress for $20 million for “centers of excellence” to develop models of care.
Dr. Fernando Carnavali of Mount Sinai’s Center for Post-COVID Care in New York City said he understands complaints that the government hasn’t made enough progress on the long COVID.
“For our culture today, which needs answers yesterday, it’s just difficult,” said Carnavali. “In chronic diseases, in general, that’s not how it works. We have other examples, of HIV, the answers did not come right away.
Finally, the administration said its plan will provide direct support to patients by ensuring access to insurance coverage and extending the framework of civil rights protections to those with long-term COVID. In keeping with Biden’s focus on reducing racial and ethnic disparities in health care, some of the focus will be on minority communities that have taken a heavy toll from COVID-19.
Federal health programs, which can serve as a model for private insurance, will look for ways to ensure that treatments for long COVIDs are covered and paid for. “The administration is working to make long-term COVID care as accessible as possible,” said a White House outline of Biden’s plan.
AP Medical Writer Lindsey Tanner contributed to this report.