White House: A Long COVID 'National Research Action Plan' Is Coming

President Biden announced a plan on April 5 to address the long-term effects of COVID-19, also known as long COVID. The effort will be led by Health and Human Services (HHS) Secretary Xavier Becerra, who will work with other government agencies on research and support for patients. 

Becerra’s first report on long COVID, called the National Research Action Plan, is due in four months.

Regardless of age, race, ethnicity, medical history, or initial experience with COVID-19, there’s no telling who will develop long COVID and who won’t. Despite all the progress researchers have made over the last two years on COVID vaccines and treatments, until now, federal resources haven’t been focused on understanding long COVID.

“Long COVID is real, and there is still so much we don’t know about it,” Becerra said during a reporter’s briefing to announce the initiative. “Millions of Americans may be struggling with lingering health effects, ranging from things that are easier to notice, like trouble breathing or irregular heartbeat, to less apparent but potentially serious conditions related to the brain or mental health.”

According to the Government Accountability Office, an estimated 7.7 million to 23 million people are dealing with long COVID-19 in the United States.

“We see you, we are focused on you, and we’re committed to advancing our nation's capacity to understand and treat your conditions,” Becerra said.

What the Biden Administration Plans to Do

What does a “government-wide response to the long-term effect of COVID-19” look like? According to Biden’s memorandum on Tuesday, it will involve coordination from the private and public sectors. Secretary Becerra will need to gather information from health experts, organizations, and individuals directly impacted by long COVID.

That information will be used to create a report detailing the types of federal services necessary to support people with long COVID and their families, as well as those dealing with mental health and substance abuse issues stemming from the pandemic.

From there, federal agencies and researchers will work together to further efforts regarding diagnosis, treatment, prevention, and services for people with long COVID. This includes creating a better definition from the condition, as well as determining exactly how many people have it.

“Obviously, this initiative is only really the first step in a much longer process, Matthew Ashley, MD, JD, chief medical officer of the Centre for Neuro Skills, a national brain injury rehabilitation practice which has been treating patients with long COVID, told Verywell. “The very difficult work of studying long COVID patients and conducting rigorous scientific inquiries has already begun, but is going to require a lot more effort. This will mean continued support and funding for those efforts, along with logistical support for agencies who are carrying out those studies.”

Still, Ashley said it’s a good place for the White House to start.

“These types of broadly-supportive measures will be critical in helping the scientific community develop not only an understanding of the illness, its pathophysiology, and its harmful effects, but also pave the way for more effective treatment and management,” he said. “We are still just scratching the surface of long COVID in many respects. At this point, we have somewhat of a phenotype—meaning we know that different people experience some version of a constellation of various symptoms. But we still need a lot more scientific work to characterize long COVID, to identify why some individuals seem to suffer from it while others do not, and to identify potential subtypes.”

Spreading the Word About Long COVID

Despite how pernicious long COVID is, experts don’t think the public has a solid grasp of how to identify it.

“Since it is not as dramatic as death and often manifests several months after the acute infection, there has not been adequate coverage in the press,” Matthew Bartels, MD, MPH, professor and chairman, department of rehabilitation medicine at Montefiore Health System in New York City, told Verywell. “Education in public health and media would help, as well as getting awareness of [the White House] initiative out. Many individuals suffering with long COVID right now are not aware they have it!”

Bartels said part of the problem is that right now, doctors don’t know how to screen for the condition.

“There are two reasons to screen: One is to help to get an estimation of the true incidence of these symptoms of COVID, the second is to treat the condition,” Bartels said. “Many patients will be in denial, or brush the symptoms aside, and it helps to focus on the issues they may have.” 

Bartels’s focus is cardiopulmonary rehabilitation, meaning a large percentage of his patients are COVID survivors. 

“When I see these patients or anyone who has a history of COVID, I do a quick run-through to see if they have any of the constellation of long COVID symptoms, including cognitive issues, fatigue, GI issues, neurological issues, loss of smell or taste, or any depression or anxiety. If possible, I try to address them, or make the appropriate referrals.”

According to Bartels, we’ve probably never seen a public health issue at the same scale as long COVID, though polio comes close.

“If even only 10% of individuals infected with COVID develop long COVID symptoms—and it may very well be much higher than this—then over 8 million people are suffering with long COVID now,” he said. “Flu and other pandemics do not typically leave such a great residual of illness and disability.”

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.