Reflections from the Deputy Director of the HHS Office of Long COVID Research and Practice

Every day I receive emails 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; She often dictates what we can and cannot do as a family. I personally know what it feels like when a medical diagnosis suddenly changes a person’s life for an indeterminate period 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 colleagues passionate inside. and outside the government. We are deeply committed to solving the long COVID challenge.

Today, on Long COVID Awareness Day, we recognize the tens of millions of Americans affected by long COVID. We recognize the doctors and researchers who are working to understand and treat long COVID. We recognize those who fight for answers. We see you.

Today we publish a new report that sets out our goals and objectives for this work and how we think about it. We see this work as divided 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.

Investigation

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. because people were not getting better. Before RECOVER Initiative Even began collecting samples, the National Institutes of Health (NIH) designed a comprehensive infrastructure to support collaboration between different government regulatory agencies, scientific governing boards, patient advocacy groups, and academic institutions to support the work ahead and design a system that was more effective. capture meaningful results. Next, RECOVER necessarily spent time and effort collecting observational data from study participants (for example, asking them questions about their symptoms and collecting biological samples such as blood and saliva) to better understand the disease and its impacts on people’s lives. people, and find essential clues about the underlying causes. Causes of long COVID. These clues, in turn, have 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 in Centers for Disease Control and Preventionhe Department of Veterans Affairsand the Department of Defense are not starting from scratch. The research community is building on efforts to understand other chronic infection-associated conditions that also affect the body in complex, difficult to understand, and likely related ways. An advocate who has worked for decades in the field of myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) told me that now, for the first time, she believed we would find answers to help people. NIH researchers tell me they’ve 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. However, we know that they face daily practical challenges. Coordinating care across multiple specialties is difficult without adequate support. Reimbursement models do not take into account the time needed with each patient or the sometimes complex and diverse tests that must be performed. Long-term 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, health research agencies within HHS are funding Projects 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 apply best practices to treat the populations most affected by the pandemic. The CDC provides information for doctors and tips for patients to talk to doctors. Provider associations have begun publishing guidance for providers. We are forming links between researchers and clinicians to accelerate the translation of research findings into implementation and for clinical practice to inform research.

Services and supports

Long investigations are being carried out on COVID. Clinicians are learning and developing new models of care. The truth is that people affected by Long COVID need help today. We know that long COVID can affect all aspects of a person’s life: their ability to work, study, care for themselves and their families, and enjoy life. It is vital to continue services and supports that can help people participate in their daily activities. In 2022 we launch a report That pointed to federal programs that can help support people at all stages of life. However, many people with newly developed long COVID may not realize that they are eligible for accommodations and protections under federal law if their condition affects their ability to perform one or more of their activities of daily living. Numerous federal agencies are working to ensure that people with long COVID know their rights and have access to Accommodations that allow them to continue living their lives.

Education

While Long COVID is on my mind most of the time, and public awareness seems to be increasing, we still need to spread the word. Public health education bells We are working to inform people that COVID-19 can cause long COVID, but we still need help getting the word out. We must also continue to spread prevention messages. As long as people are infected with COVID-19, some people will progress to long COVID. And repeated infections increase the risk of long COVID. Fortunately, 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-government partners. Working together allows us to share experience, 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 everything (support and criticism) and that helps us do our job better.

This report reflects our current thinking about Long COVID and the activities the federal government is undertaking to meet the goals and objectives set forth herein. 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’re reading this, get to work and join us.