For Your Information: Government Response to Long COVID
FACT SHEET: Biden-Harris Administration Makes Progress in the Whole-of-Government Response to Long COVID
U.S. Department of Health and Human Services – Office for Civil Rights
April 05, 2023 – One year ago today, President Biden issued the Presidential Memorandum and Fact Sheet that directed the Secretary of Health and Human Services to coordinate a whole-of-government response to the longer-term effects of COVID-19, including Long COVID and associated conditions. Chaired by Assistant Secretary for Health Admiral Rachel Levine, the Long COVID Coordination Council, comprised of fourteen federal agencies, published The Services and Supports for longer-term Impacts of COVID-19 – PDF and The National Research Action Plan – PDF reports in response to this call for action.
Today, HHS is releasing this Fact Sheet outlining the progress made in the last year in responding to Long COVID and actions moving forward.
Delivering high-quality care for individuals experiencing Long COVID
Promoting coordinated, person-centeredcare models: This month, HHS’s Agency for Healthcare Research and Quality will issue a new Notice of Funding Opportunity to expand access to comprehensive, coordinated, and person-centered care for people with Long COVID, particularly in underserved, rural, vulnerable, or minority populations disproportionately impacted by the effects of Long COVID. This funding intends to support existing multidisciplinary Long COVID clinics to develop and implement new or improved care delivery models, provide services to more people with Long COVID, and support primary care practices to provide Long COVID education and management of patients in communities. AHRQ intends to make up to $9 million in awards by September 2023.
Expanding and strengthening Long COVID care for veterans: The Department of Veterans Affairs (VA) continues to expand access to care for veterans with Long COVID. The Veterans Health Administration now has 23 clinical facilities across the country with fully established Long COVID programs. VA also has additional programs and robust referral and follow-up systems already in place across the nation. These VA programs are serving as a source of rapid learning and long-term research on best practices and new therapies that can benefit the broader scientific community, and ultimately, improve patient care for all Americans with Long COVID.
Promoting provider education and clinical support based on what we know today
CDC-supported provider resources: Centers for Disease Control and Prevention has an Information for Healthcare Providers webpage. CDC has also established a memorandum of understanding with the American Academy of Physical Medicine and Rehabilitation to improve coordination and dissemination of clinical knowledge of recovery and symptom management of Long COVID. In addition, the CDC-funded Project ECHO provides a distance- learning platform for providers nationwide.
Care guidance from the VA: The VA’s Whole Health System Approach to Long COVID Patient-Aligned Care Team Guide, published in August 2022, offers providers recommendations for addressing Long COVID, including quick-reference guides of the most common symptoms. In addition, VA is deploying a digital screening platform at four of its health systems to rapidly identify those with Long COVID to provide clinical intervention and support. VA is also launching the Long COVID Practice Based Research Network (LC-PBRN), which will generate more rapid insights into the care and outcomes of VA patients presenting with Long COVID.
Behavioral health and Long COVID: The Substance Abuse and Mental Health Services Administration’s Overview of the Impacts of Long COVID on Behavioral Health – PDF, published in January 2023, provides a summary of the evidence on Long COVID’s behavioral-health implications, including associated disorders, neuropsychiatric causes, and future research needs.
Diagnosis code education: The Centers for Medicare and Medicaid developed educational materials for providers so they can use the new ICD-10 code for Long COVID.
The definition for Long COVID: To identify, define, and accurately document Long COVID, HHS is working with the National Academies of Science, Engineering, and Medicine to examine the federal interim working definition for Long COVID and related technical terms. This work is foundational to all other progress. It will impact a physician’s ability to diagnose and treat Long COVID, and a patient’s ability to recognize the signs, symptoms, and conditions they are experiencing as Long COVID, and enable them to seek the care and support they need.
Better digital health care for Long COVID: In support of the expanded use of telehealth, HHS’s Health Resources and Services Administration developed the Telehealth Technology Enabled Learning Program, which connects specialists at academic medical centers with primary-care providers in rural, frontier, and underserved populations, providing evidence-based training and support to help them treat patients with complex conditions in their communities. To date, there have been eleven learning community sessions that focused on Long COVID, reaching over 1,200 providers.
Making services and supports available for individuals experiencing Long COVID
Amplifying programs to help Americans experiencing new challenges: The Services and Supports for Longer-term Impacts of COVID-19 – PDF report outlines over 200 federally funded programs, supports and services – from housing and financial assistance programs to child care support – that may be available to those impacted by Long COVID. A quick start guide – PDF helps people know where to begin.
Identifying workplace interventions that help workers experiencing Long COVID
The Department of Labor held an online dialogue with individuals, employers, national organizations, state and local community, and others to develop possible solutions to workplace challenges posed by Long COVID. A final summary report was released in February 2023 – PDF. The DOL also issued a publication, Supporting Employees with Long COVID: A Guide for Employers – PDF, which provides information and resources to help employers support employees with Long COVID, so they can maintain employment.
The Administration for Community Living awarded a grant to develop and test an intervention to enable return-to-work by employees disabled by brain fog and other cognitive impairments associated with Long COVID. The intervention combines cognitive therapy with vocational rehabilitation services.
Retaining Employment and Talent after Injury/Illness Network (RETAIN), a joint project between the Department of Labor and Social Security Administration, tests early interventions to help workers stay at work or return to work quickly after experiencing the onset of a work-threatening injury, illness, or disability, like Long COVID. RETAIN issued an Early Assessment Report – PDF outlining implementation of the RETAIN program in five state-specific chapters.
Raising awareness of Long COVID as a potential cause of disability
Translating research into inclusive disability policy: The Social Security Administration is funding research focused on how Long COVID may affect health, employment, and participation in Social Security programs. In addition, SSA is sponsoring a consensus study through the National Academies of Science, Engineering and Medicine where the committee on Long-Term Health Effects Stemming from COVID-19 and Implications for the SSA, will seek evidence regarding long-term disability that may result from COVID-19 illness and produce a report addressing the status of the diagnosis, treatment, and prognosis of related disabilities based on published evidence.
Connecting people with the resources they need: The Administration for Community Living launched The DIAL in 2021 to provide multilingual support to connect people with disabilities to information and services to improve access to COVID-19 vaccines and related resources. Staff are trained on Long COVID guidance and resources, and the DIAL has since provided assistance to nearly 80,000 people with disabilities.
Advancing the Nation’s Understanding of Long COVID
Launching the National Research Action Plan on Long COVID: The National Research Action Plan on Long COVID – PDF provides a unified overview of ongoing federal research on Long COVID, including over 75 research projects and hundreds of published articles. It also lays out a path for future inquiry.
Understanding and treating Long COVID
NIH’s RECOVER Initiative is the world’s largest and most comprehensive study of Long COVID. The study has been patient-centered from day one through listening sessions; focused outreach to groups often disproportionately affected by COVID-19 and potentially less aware of Long COVID; and participation of patient representatives at every level of the study, from protocol development to governance. Through its multi-pronged research approach, RECOVER is producing answers that will help those who need it. This foundational research is already providing valuable insights with more than 70 reports published or under development. Components include:
longitudinal observational studies across the lifespan that have enrolled approximately 20,000 new participants and are leveraging roughly 50,000 participants from adult and pediatric longitudinal community-based cohorts;
electronic health record studies analyzing more than 60 million adult and pediatric records;
a suite of more than 40 pathobiology studies;
a mobile health platform; and
a set of clinical trials expected to launch in the coming months aimed at treating the most burdensome symptoms identified by patients.
The CDC-funded study Innovative Support For Patients with SARS-CoV-2 Infections (INSPIRE) aims to describe the long-term effects of COVID-19 infection. In this entirely virtual study, more than 6,000 participants have described how they are feeling by completing online surveys and share their medical information over 18 months through a secure cloud-based personal health platform leveraging innovation to address the pressing needs for answers. Continuing data from the survey is published on CDC’s COVID Data Tracker.
In addition, the Department of Defense and VA have completed enrollment on parallel studies, recruiting Veterans and active-duty military at time of first SARS-CoV-2 infection and following them for 24 months to help determine factors that influence short-term and long-term outcomes of COVID. This foundational study will not only support our military medical readiness but also our broader understanding of the disease.
Leveraging the power of federal data
With its robust, national health care databases, VA is using data from over 700,000 individuals with COVID-19 and VA continues to learn more about Long COVID. This includes building on its already published analyses relying on EHR data on kidney, cardiovascular, mental health, neurologic, endocrine, gastrointestinal outcomes in people who had COVID-19. VA studies also evaluated the effectiveness of vaccines in reducing risk of Long COVID and characterized the risks of repeated infections on acute and long-term COVID outcomes. Other VA research findings show vaccine and booster effectiveness against infection and death. Ongoing VA studies seek to evaluate the effectiveness of antivirals in reducing risk of Long COVID.
As part of RECOVER, NIH is using de-identified electronic health record data in the National COVID Cohort Collaborative (N3C), a national, centralized public database, to conduct research on Long COVID, using machine learning techniques, identified characteristics of people with Long COVID and those likely to have it.
CDC is taking a multiprong approach to surveillance. Their work leverages electronic health records to estimate the burden of Long COVID. CDC has begun to include questions on Long COVID in several national health surveys including National Health Interview Survey, National Health and Nutrition Examination Survey, Household Pulse Survey, and the Behavior Risk Factor Surveillance Survey. The Household Pulse survey has released data on Long COVID. CDC has published a number of reports on the burden and occurrence of Long COVID in the MMWR to rapidly disseminate information.
Using lessons learned from associated conditions. Infection-associated chronic conditions are not new. In understanding Long COVID and the barriers to seeking diagnosis, treatment, and care we must draw on the experiences of those who have researched, treated, or endured the effects of other infection-associated chronic conditions such as Lyme, Myalgic encephalomyelitis, chronic fatigue syndrome (ME/CFS), dysautonomia, and others. Similarly, the knowledge gained from investigating Long COVID will inform other conditions. In June the National Academies of Science, Engineering, and Medicine will hold a workshop sponsored by CDC Toward a Common Research Agenda in Infection-Associated Chronic Illnesses. The workshop will bring together clinicians, researchers, and other stakeholders to examine common biological and clinical factors associated with these chronic illnesses, discuss potential strategies to treat or prevent disease progression and increase collaboration among stakeholders to build a community of shared priorities that can enhance patient care.
Learning from patients, providers and those impacted most
On April 25 the Food and Drug Administration will hold a Public Meeting on Patient Focused Drug Development for Long COVID to obtain patient input on aspects of Long COVID, including how Long COVID affects their daily life, symptoms that matter most to patients, their current approaches to coping with Long COVID, and what they consider when determining whether or not to participate in a clinical trial.
In November 2022 the Health+ Long COVID Report – PDF was published. The report brings the experiences of people with Long COVID to the forefront in defining solutions. The work includes patient archetypes, journey maps, and opportunity areas for action. The insights from this report will focus attention and interventions in areas that matter the most to the community, as articulated by patients and those with first-hand, lived experience with Long COVID.
Addressing the long-term impacts of the pandemic
Recognizing the impact on children and families: The National Academies of Sciences, Engineering and Medicine sponsored by Administration for Children and Families, recently published a report Addressing the Long-Term Impact of the COVID-19 Pandemic on Children and Families on the consequences of, and solutions to, the long-term effects of COVID-19 on children living in high-risk communities. These can include physical, mental, and socio-economic repercussions that could adversely impact a child’s health and development for years to come.
Raising Long COVID awareness and hope
We Can Do This Long COVID resources for communities: In support of their efforts to educate their patients, families, and members of their community, We Can Do This the HHS COVID-19 Public Education Campaign developed Long COVID resources for leaders who want to inform their communities about Long COVID and how to reduce the chance of getting it through vaccination. The FAQs, survivor videos, messages from experts, and social media posts are available in multiple languages and have touched countless lives.
Veterans’ Long COVID journeys: In March, VA released the Long COVID: Three Veterans’ Journey video to help veterans recognize Long COVID symptoms that they may be having, and to help them see that they are not alone and there is hope.
The whole-of-government response by the Biden-Harris administration this past year has made tremendous progress in the fight against Long COVID, but our work is not yet done. Agencies across the U.S. Government continue to work together to conduct research, draw on the lived experience of those with Long COVID and those that care for them, and provide support and services. Through collaboration with federal partners, researchers, clinicians, patient advocacy organizations, and the business sector, the Administration remains committed to addressing the longer-term impacts of the worst public health crisis in a century. We will continue to listen and learn from patients, caregivers, frontline workers, and those with lived experience, so we can accelerate understanding and breakthroughs together.
U.S. Department of Health and Human Services – Office for Civil Rights
