HHS reports detailed plans to improve care and research on long-COVID

Known as “Long COVID,” SARS-CoV-2 is a pervasive health problem affecting between 7.7 and 23 million Americans, according to estimates by the US Government Accountability Office. At least a million Americans have lost work hours due to this condition.

Long COVID refers to a collection of signs, symptoms, and conditions that persist for a month or more after initial infection.

“Two perspectives must be balanced in defining Long COVID: the need to learn more and avoid hasty definitions that unduly exclude dependent patients, and the need to establish tentative definitions to enable access to healthcare and disability services as a science of Long COVID continues to emerge,” Adm. Rachel L. Levine, MD, in a statement dated Aug. 3 JAMA Position. She is the Assistant Secretary of Health and Human Services at the US Department of Health and Human Services (HHS).

HHS has released two major reports on Long COVID in response to a memo from President Joe Biden calling for a government-wide response on the issue. In conversation with JAMA Editor-in-Chief Kirsten Bibbins-Domingo, PhD, MD, MAS, Dr. Levine detailed the key elements of each report and explained how research and support could contain and prevent this chronic health problem.

One of the HHS reports outlines a national research agenda (PDF) to prevent, diagnose and treat long-lived COVID. “This report is the first time we’ve brought together all of the current research in one place and looked at the gaps. We’ve been working to find a coherent way to move forward,” said Dr. Levine.

Studies on long COVID have reached a point where they are getting bigger and more robust. Several federal studies had sample sizes in the millions and offered clearer insight into the scope, scale and diversity of long-term COVID states, she said.

“Second, we gain confidence from the data that between 5% and 30% of people with COVID-19 will experience some form of long-term COVID.”

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dr Levine hopes federal funding will become available to advance research at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Department of Veterans Affairs, and the private sector.

Programs of interest include NIH’s RECOVER, which focuses on the long-term effects of COVID and people’s recovery from infection, and the CDC study Innovative Support for Patients With SARS-CoV-2 Infection.

“We want to do research on all the different aspects of Long COVID,” said Dr. Levine.

The second HHS report lists more than 200 federal services and supports (PDF) for people experiencing the longer-term effects of COVID-19. This is designed to help patients, their families, communities and the support of public and private organizations, said Dr. Levine.

The federal government is working to coordinate and expand services for people with long-term COVID and associated illnesses, and for people with behavioral and mental health issues and bereavement.

“The longer-term impact of the COVID-19 pandemic extends beyond the long COVID, impacting patients and communities, and the economic and social fabric of all our communities,” noted Dr. Levine.

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For a long time, COVID has had an unequal impact on people who are economically or socially excluded, people with disabilities, older adults, and people from historically marginalized racial and ethnic groups.

Health equity was a guiding principle in both reports, emphasized Dr. Levine. For example, the support and service reports have a “Know Your Rights” section.

“There is a call for each of the federal government services covered in the report to ensure they emphasize health equity,” she added.

The two reports are just the beginning and offer building blocks for change.

“We need an implementation strategy and a way of moving forward,” she said.

Learn why treating long COVID requires a patient-centric approach.

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