AHRQ’s Unique Effort to Advance Care for People Living with Long COVID

Long COVID is a generation-defining health challenge. According to the CDC, in 2022, at least 9 million people throughout our country were struggling with post-COVID-19 infection effects, and over 18 million people have ever experienced Long COVID, including nearly one million children. However, these conservative estimates and other studies suggest that 10 percent or more of the U.S. population may experience the post-infection consequences of COVID-19. These lingering consequences impact people of all ages and backgrounds, and today, it is one of the Nation’s most complex and urgent health issues that require attention.

As we recognize International Long COVID Awareness Day on March 15, we know that the condition can include more than 200 symptoms, including severe cardiovascular and cognitive impairment, that develop or continue for weeks, months, or even years after initial infection. The impacts can be profound and debilitating, particularly for underserved or minority populations with poor access to affordable, quality healthcare or jobs that allow accommodations for illness and disability.

To confront these challenges, AHRQ launched the AHRQ Long COVID Care Network in September 2023. The network consists of nine multidisciplinary Long COVID clinics to which AHRQ awarded $45 million in grants to expand access to comprehensive care, develop and implement new or improved care delivery models, foster best practices for Long COVID management, and support the primary care community nationwide with Long COVID education and management.

The network design was informed partly by a January 2023 summit (PDF, 4 MB) with Sen. Tim Kaine and Virginia healthcare delivery organizations, clinicians, and patients. AHRQ has also collected input from representatives from critical constituencies such as health system and practice leaders, payers and policymakers, subject matter experts, and patients who have lived with Long COVID and shared their experiences. Additional contributions came from previous AHRQ research on caring for people with multiple chronic conditions.

The AHRQ Long COVID Care Network clinics already see more patients and provide more services. They’re also engaging in a peer-to-peer learning community and working urgently to implement the latest evidence. The on-the-ground realities of patient care must inform new clinical and health services research.

Caring strategies for adult, pediatric, and priority populations vary across the Long COVID Care Network based on the needs of the patients they serve. They include expanding in-person and virtual visit capacity; establishing new satellite clinics; adding dedicated care coordination, social services, and language interpretive staff; and implementing behavioral health and rehabilitation group support programs.

As they develop new insights and tools to improve care, the AHRQ Long COVID Care Network will share what they learn with primary care physicians, health system leaders, and other vital stakeholders nationwide, not just those served directly by the network clinics.

This initiative is part of a broad effort by the Biden-Harris Administration to accelerate scientific progress and provide needed support and services to individuals with Long COVID. In addition to the network, AHRQ is conducting additional research and other activities to improve care for people with Long COVID (learn more).

To coordinate efforts across the Department of Health and Human Services (HHS) and all of the federal government, the White House has established the Office of Pandemic Preparedness and Response Policy, and HHS has established The Office of Long COVID Research and Practice.

We understand that the people suffering from Long COVID, their families and friends, and their clinical team want the best possible care. We will provide updates on our efforts and share innovations with the broader healthcare and patient community as we identify the most promising Long COVID models of care and integrate new biomedical and care delivery insights into care protocols for addressing the urgent medical and social needs of people suffering from Long COVID.

Dr. Valdez is director of AHRQ. Dr. Poonam Pardasaney is a staff service fellow in AHRQ’s Center for Evidence and Practice Improvement.

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