AHRQ Efforts To Address Long COVID

AHRQ’s Fiscal Year 2023 budget included $9 million to address Long COVID, the debilitating symptoms that persist after recovery from an acute COVID infection. AHRQ’s efforts will focus on three areas:

• Investing in health systems research on how to organize and deliver comprehensive, coordinated, person-centered care for people living with Long COVID.
• Providing support to established multidisciplinary Long COVID clinics to expand access and services for people with Long COVID.
• Enhancing the ability of primary care practices to care for people with Long COVID by providing education and consultative support from Long COVID clinics.

Long COVID is broadly defined as signs, symptoms, and conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection. The signs, symptoms, and conditions are present for four weeks or more after the initial phase of infection; may be multisystemic; and may present with a relapsing–remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events or disability even months or years after infection.

Long COVID is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes.

While estimates vary, up to one-third of people with COVID-19 experience Long COVID, with estimates being much higher in females; transgender and bisexual people; people without a bachelor’s degree, particularly those without a high school diploma; and people with a disability. Further, many at-risk and minority populations face barriers that can exacerbate the impact of Long COVID on their lives and complicate their prognosis and recovery.

Examples of such barriers include difficulty with healthcare access, communication, and internet accessibility; lack of health insurance; lower health literacy; greater difficulty using patient portals and telemedicine; higher no-show rates for appointments; and greater medical and social vulnerabilities.

Long COVID Funding Opportunities

On September 20, 2023, AHRQ announced nine grant awards to Long COVID clinics that will focus on increasing access to care, improving person-centered care coordination, expanding multidisciplinary networks and behavioral health support, and expanding social support services for adult, pediatric, and priority populations through strategies such as:

• Increasing Long COVID care access by expanding in-person and virtual visit capacity, establishing new satellite clinics, and growing provider-based referrals through a coordinated education series.
• Adding dedicated care coordination, social services, language interpretive staff, and group programs for people with Long COVID.
• Integrating dedicated behavioral health staff and implementing behavioral health and rehabilitation group support programs.

Information about the grantees is available here.

Current Projects on Long COVID

Models of Care for Treatment of Long COVID

AHRQ's Evidence-Based Practice Center (EPC) program will develop a new technical brief (evidence map) focused on models of care for people with Long COVID. The report will summarize definitions of long COVID and describe what is known about long COVID models of care, including models currently in use, their applicability to the U.S. population, promising new approaches, advantages and disadvantages of different models, barriers and facilitators to implementation, access and equity issues, and needed research.

Understanding COVID-19 Trajectory and Outcomes in the Context of Multiple Chronic Conditions Through e-Care Plan Development

This project is a partnership between AHRQ and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), funded by the Assistant Secretary for Planning and Evaluation Patient-Centered Outcomes Research Trust Fund (ASPE OS-PCORTF). The project aims to develop a standards-based, interoperable, electronic care (eCare) plan designed to facilitate aggregation and sharing of critical person-centered data across home-, community, and clinical settings to support research and to improve the care of people living with multiple chronic conditions who are at increased risk for adverse outcomes from COVID and developing Long COVID. The project has identified standardized data elements for Long COVID and incorporated them into the e-care plan. Additional details can be found at Understanding COVID-19 Trajectory and Outcomes in the Context of Multiple Chronic Conditions (MCC) through e-Care Plan Development and Multiple Chronic Conditions e-Care Plan Project.

Summit on Best Practices for Treating Long COVID

The Best Practices for Treating Long COVID Summit was held on Jan. 27, 2023, in Richmond, Virginia. Sponsored by AHRQ in partnership with the Office of Senator Tim Kaine, D-Va., the Summit’s goal was to hear directly from patients and clinicians about their experiences with Long COVID.

The discussions were designed to drive Senator Kaine's work (PDF, 150 KB) in the Senate and to further AHRQ’s efforts to support healthcare clinicians and health systems to better provide patient-centered, coordinated care for patients with Long COVID.

Beyond that, the conversation was intended to inform the whole of the U.S. Department of Health and Human Services' (HHS') efforts to address Long COVID, involving patients, caregivers, clinicians, and community organizations in shaping initiatives to address this complex condition. Access a summit report of the event (PDF, 4 MB).

AHRQ National Advisory Council Discussion on Long COVID

AHRQ's National Advisory Council, which advises AHRQ’s director on Agency activities and priorities, devoted a portion of its March 6, 2023, meeting to Long COVID and Addressing Health System Fragmentation. Subsequent to the meeting, National Advisory Council Chair Edmondo Robinson,  M.D., M.B.A., M.S., authored an AHRQ Views blog post that discussed the unique challenges presented by Long COVID while emphasizing AHRQ's potential to respond to severe gaps that have emerged in our fractured healthcare system.

Additional Resources

• The National Research Action Plan on Long COVID Report (PDF, 1.3 MB) details a research agenda focused on prevention, diagnosis, and provision of services for people with Long COVID.
• The Services and Supports for Longer-Term Impacts of COVID-19 Report (PDF, 1.6 MB) provides federally-funded supports and services that people with Long COVID can access. This includes existing programs that address mental health, substance use, bereavement, food assistance, housing assistance, and similar issues.
• The Health+ Long COVID Report (PDF, 15.6 MB) highlights the voices of patients with Long COVID and outlines areas of action, such as increasing awareness of and education on Long COVID, increasing patient access to supportive services, educating workplaces and schools on accommodations for people with Long COVID, and increasing access to disability benefits.
• The U.S. Department of Veterans Affairs (VA) Veterans Health Administration (VHA) has developed a guide with evidence-informed tools for clinical care of veterans, entitled Whole Health System Approach to Long COVID: Patient-Aligned Care Team Guide (PDF, 706 KB).
• If a person believes they were discriminated against by an entity covered by Federal civil rights laws, they may file a complaint with the Office for Civil Rights within the U.S. Department of Health and Human Services at https://www.hhs.gov/ocr/complaints.
• If a person believes they were discriminated against by an entity covered by the Americans with Disabilities Act, they may file a complaint with the Disability Rights Section in the U.S. Department of Justice at https://www.ada.gov/file-a-complaint/.
• For a summary of resources provided by HHS, visit https://www.covid.gov/longcovid.
• Frequently Asked Questions - RFA-HS-23-012: Implementing and Evaluating New Models for Delivering Comprehensive, Coordinated, Person-Centered Care to People with Long COVID (U18) (PDF, 311 KB)