Summary:
Every day I receive e-mails from people with Long COVID desperate for help. I have friends, family, and colleagues who have Long COVID or similar conditions. My mother has lived with POTS (Postural Orthostatic Tachycardia Syndrome) for over a decade-it often dictates what we can and cannot do as a family. I personally know what it feels like for a medical diagnosis to suddenly upend one's life for an undetermined amount of time.
I have been doing this work since May 2022. A dedicated team has worked hard to create a new Office of Long COVID Research and Practice, launch the Secretary’s Advisory Committee on Long COVID, hire our inaugural Director, and work with hundreds of passionate colleagues inside and outside of government. We are deeply committed to solving the challenge of Long COVID.
Today on Long COVID Awareness Day we recognize the tens of millions of Americans impacted by Long COVID. We recognize the clinicians and researchers that are working to understand and treat Long COVID. We recognize those who fight for answers. We see you.
Today we release a new report that lays out our goals and objectives for this work and how we think about it. We see this work falling into five domains: research, clinical practice, supports and services, public education, and coordination. Below are my reflections on each domain. Read the full report for more details.
Research
Long COVID is complex. When Long COVID was first recognized, and research began, we lacked a fundamental understanding of the full clinical spectrum and causes of Long COVID—we didn’t know why people were not getting better. Before the RECOVER Initiative even started collecting samples, the National Institutes of Health (NIH) designed a comprehensive infrastructure to support collaboration between different government regulatory agencies, scientific steering boards, patient advocacy groups, and academic institutions to support the upcoming work and design a system that would most effectively capture meaningful outcomes. Next, RECOVER necessarily spent time and effort collecting observational data from study participants (e.g., asking them questions about their symptoms and collecting biospecimens like blood and saliva) to better understand the disease and its impacts on people’s lives, and find essential clues to the underlying causes of Long COVID. These clues have in turn helped develop clinical trials for treatments, cures, and ways to prevent Long COVID.
Long COVID is new, but we are not starting from scratch. RECOVER, other federally funded research initiatives at Centers for Disease Control and Prevention, the Department of Veterans Affairs, and the Department of Defense are not starting from scratch. The research community is building on efforts to understand other infection associated chronic conditions that also impact the body in complex, hard to understand, and likely related ways. An advocate working on myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) for decades told me that she now, for the first time, believed that we would find answers to help people. NIH researchers tell me they have never seen anything like RECOVER. With Long COVID, we have the opportunity and responsibility to finally understand why some infections leave some people so sick for so long.
Clinical Practice
Healthcare providers want to help patients with Long COVID. Yet we know they face daily practical challenges. Care coordination across multiple specialties is difficult without the right support. Reimbursement models don’t account for the time needed with each patient and the sometimes complex and diverse tests that need to be performed. Long COVID clinics have emerged to meet this demand, but we continue to hear about long wait times and lack of access, especially for rural populations. As a result, healthcare research agencies within HHS are funding projects to study what high quality care looks like for people with Long COVID and how to expand access beyond Long COVID clinics. Other agencies are working with Community Health Centers to apply best practices to treat the populations most impacted by the pandemic. CDC provides information for clinicians and tips for patients to speak to clinicians. Provider associations have started to publish guidance for providers. We are forming linkages between researchers and clinicians to speed translation of research findings to implementation and for clinical practice to inform research.
Services and Supports
Long COVID research is underway. Clinicians are learning and developing new models of care. The fact remains that people affected by Long COVID need help today. We know that Long COVID can impact all aspects of a person’s life—their ability to work, study, take care of themselves and their families, and enjoy life. It is vital to continue the services and supports that can help people engage in their daily activities. In 2022 we released a report that pointed to federal programs that can help support people across all stages of life. However, many people with newly developed Long COVID may not realize they are eligible for accommodations and protections under federal law if their condition affects their ability to carry out one or more of your daily life activities. Numerous federal agencies are working to ensure that those with Long COVID are aware of their rights and have access to accommodations that allow them to continue to live their lives.
Education
While Long COVID is on my mind most all of the time, and public awareness seems to be increasing, we still need to spread the word. Public health education campaigns are working to inform people that COVID-19 can cause Long COVID, but we still need help getting the word out. We also need to continue to spread prevention messages. As long as people are infected with COVID-19, some people will progress to Long COVID. And repeat infections increase your risk of Long COVID. Luckily, early research findings suggest that vaccination for and treatment of COVID-19 reduces your risk of Long COVID.
Coordination
Collaboration is critical to addressing Long COVID. The effects of Long COVID are far reaching, and therefore so is our work. We work with hundreds of colleagues across federal government departments and agencies, and nearly as many non-governmental partners. Working together allows us to share expertise, data, knowledge, and resources. It also ensures that diverse perspectives are represented. It is not easy or fast, but it is necessary. We listen to it all—the support and the criticism—and it helps us do our jobs better.
This report reflects our current thinking on Long COVID, and the activities the federal government is undertaking to meet the goals and objectives laid out here. The federal government continues to play a critical role in this work, but we will never be able to solve this challenge alone. If you are reading this, please find yourself in the work and join us.
