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Long COVID: The US Federal Response

On August 3, 2022, the US Department of Health and Human Services released 2 major reports in response to a presidential memo calling for a whole-of-government response to the SARS-CoV-2 sequelae known as “Long COVID." JAMA Editor in Chief Kirsten Bibbins-Domingo, PhD, MD, MAS, discusses these new reports and the research and support needed to address this pervasive health concern with HHS Assistant Secretary for Health Rachel L. Levine, MD. Recorded July 29, 2022.

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[Dr Bibbins-Domingo:] Hello and welcome to this JAMA conversation. I'm Dr Kirsten Bibbins-Domingo. I'm the Editor in Chief of JAMA and the JAMA Network, and I'm joined today by the Assistant Secretary for Health in the Department of Health and Human Services, Admiral Rachel Levine, who is a physician and a pediatrician. Admiral Levine offered a Viewpoint in JAMA this week, timed with the release of two reports from HHS on the government-wide response to Long COVID. Admiral Levine, thank you for joining me today.

[Dr Levine:] Well, thank you. I'm very pleased to be here.

[Dr Bibbins-Domingo:] So tell us about these two reports on Long COVID. What's the main message in these reports and why were they released now?

[Dr Levine:] Well, thank you for that question. The takehome message is that Long COVID is real. Estimates vary, but anywhere between 7.7 to 23 million Americans have developed Long COVID, and roughly 1 million people out of the workforce at any given time due to Long COVID. The Biden administration is committed to taking action to help those who need help. In April, President Biden issued a memorandum on addressing the long-term effects of COVID-19. Now this calls for the creation of two reports and will be releasing the reports on August 3rd. The first report is on the services and supports for longer-term impacts of COVID-19. So this is the services report. This outlines federally funded support and services for individuals experiencing the longer-term effects of COVID-19 in the areas of Long COVID and associated conditions, but also mental health and substance use as well as bereavement. The second report is the National Research Action Plan on Long COVID, the research plan. And this proposes a comprehensive and equitable research strategy to inform our national response to Long COVID.

[Dr Bibbins-Domingo:] Wonderful. I'd love to take the second report first. I think all of us who are physicians who have been following the news, we know that Long COVID is a really important way in which the current pandemic will be with us for a while. But it's also been challenging to think about what the definition of Long COVID actually is. What kind of definition is used to guide the report for research on Long COVID?

[Dr Levine:] Well, you know, we have taken our strategy as a reflection of our patients' voices. Long COVID is broadly defined as signs, symptoms and conditions that continue or develop after a COVID-19 or SARS-CoV-2 infection. The signs, symptoms and conditions are present for four weeks or more after the initial phase of the infection. They may be multi systemic, and may present a relapsing, remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection. You know, Long COVID is not necessarily one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes.

[Dr Bibbins-Domingo:] Yes, it seems that the research plan that's outlined is fairly broad and comprehensive. I know you outlined seven areas that move from really defining a little bit of 'how do we make this diagnosis of Long COVID?' to things that are very mechanistic to understanding how do we get Long COVID, to the epidemiology surveillance, a focus on treatments, and then broader implications for the economic consequences and the broader policy consequences. There's a lot of work already being done in this area by different agencies. What's new in the report, though, in highlighting these particular seven focus areas?

[Dr Levine:] I think we are now at an inflection point and the studies are getting more robust and they're getting larger. Now, it does take time to set up and analyze studies over time to obtain meaningful data. For example, two recent studies using electronic health records, one from the CDC published in the MMWR and the other from the VA, have the sample sizes in the millions. These type of studies are giving us the first reliable glimpse at the scope, the scale and the diversity of Long COVID conditions. Second, we're gaining confidence from the data that between 5 and 30% of persons with COVID-19 will experience some form of Long COVID. Whether high or low, short or long term, these health consequences represent a substantial impact on our patients, but also a substantial impact on our health care system. Third, this report is the first time that we've collected all the research that's happening, and it really is significant. All the research that's happening in one place, looking at the gaps and we have worked to create a cohesive path to move forward.

[Dr Bibbins-Domingo:] Can we expect to see more funding of research in this area?

[Dr Levine:] Well, we are hopeful that there will be more research for funding by the NIH, by the CDC, by the VA, by the private sector as well. So we are hopeful that there will be more funding for this research.

[Dr Bibbins-Domingo:] Wonderful. It sounds like that the report is really talking about a strategy for coordinating multiple efforts that are happening. And then with the hope that there is that there is also additional investments in all of these areas.

[Dr Levine:] So that is correct. We wanted to to emphasize that the people impacted by by Long COVID, we want to do research on all of the different aspects. And so we have the the program from the NIH, the RECOVER program, as well as INSPIRE from the CDC. We've also had some great research from the VA and of course, the private sector. So we're going to try to put it all together. But, you know, the reports are the beginning, the reports are going to come out on August 3rd and that's the beginning. And then we need to have an implementation strategy and a path as we move forward.

[Dr Bibbins-Domingo:] So one of the things that really struck me in the Viewpoint that you wrote is that that you want to to coordinate and put an emphasis on the science. And we know the science is emerging, but we also know that people are suffering right now. We have patients, we have health care systems, we have clinicians who are really both experiencing the effects of Long COVID or trying to understand how to how to really provide the best possible services for the many patients and communities who are dealing with the effects of Long COVID. So it does strike me that the second report really is focused on the needs on the ground right now, even as the science continues to emerge. And you have a fairly broad scope of the services, you're focused on Long COVID, but also you highlight the mental health aspects, that as we know have worsened during the pandemic, as well as substance use disorder. Why did you choose to take such a broader scope and not just limit it to Long COVID?

[Dr Levine:] Well, you're correct. This does have an expanded focus in terms of the second report, which is on supports and services. So on April 5th, the president directed the federal government to coordinate and augment services to three large groups. First group is those with Long COVID and associated conditions. The second was those experiencing the behavioral health challenges, mental health challenges, substance use, etc. and the third were those experiencing bereavement. The longer-term effects of the COVID-19 pandemic do go beyond Long COVID, and it has been impacting patients and communities, as well as the economic and social fabric of our all of our communities. Accordingly, the services report inventories over 200 federally-supported services to help our patients, to help their families, their communities and supportive public and private organizations.

[Dr Bibbins-Domingo:] So we know that that the inequities of the pandemic has been the major feature of the pandemic. So we are all affected by COVID, but many communities, proportionately more. Those same communities will experience the sequelae of COVID, whether it is the bereavement or the mental health aspects or the effects of the virus directly over time. And oftentimes those same communities don't have all of the resources, both within particular individuals and families, but also the types of infrastructure, health care infrastructure that exists in those communities. How does the report speak to the equity issues?

[Dr Levine:] Well, you are absolutely correct. Health equity is such a high priority of the Biden-Harris administration as well as the Secretary Becerra of HHS, and of my office, the office of the Assistant Secretary for Health. You know, everyone is at risk of COVID-19 and its effects. But you are correct- research shows that racial and ethnic minority groups, older adults, people with disabilities and those who are poor, they are suffering disproportionately by Long COVID as well as the associated conditions. This was highlighted during the COVID-19 Health Equity Task Force, which was organized out of our office and our Office of Minority Health. And I had the honor of having an ex-officio seat on the COVID-19 Health Equity Task Force. Equity has really been a guiding principle, a foundational principle in the formation of both reports. Equity considerations are highlighted prominently throughout both reports. For example, health equity considerations are called out in relation to each federal government Long COVID research area, and it reinforces the need for equity in every aspect of research: the pathophysiology research, the therapeutics research, the health economic research. In addition, of course, the supports and services reports has a 'know your rights' section, it has a call out for each of the federal government service areas covered in the report to make sure that they are emphasizing health equity.

[Dr Bibbins-Domingo:] Right. I think about this a lot. I take care of patients within a safety net setting in San Francisco. And I think we have seen both the effects of COVID and the challenges in really getting services. And we see this across many things- who has the the the ability to take off of work to deal with with with some of the issues, who can get access to services that are not directly related to COVID? And so I assume this is part of the reason to think broadly and expansively about what the sequelae of COVID are, beyond those directly related to the virus and its impacts.

[Dr Levine:] So that is correct. And that is why the president called for this more expansive report not only on Long COVID and associated conditions themselves, but also on supports and services for those impacted by COVID-19, which we know has had a substantial impact in terms of mental health, in terms of substance use and bereavement. And so we're taking this expansive approach to the report.

[Dr Bibbins-Domingo:] Great. And and in science, we want to have a very strict definition and be very specific about it. But it sounds like the combination of these two reports recognize that the science is emerging... our ability to understand the very strict definitions. But in the meantime, the need to to address the needs of patients, communities, the systems that care for them is also going to be important even as the definitions emerge.

[Dr Levine:] So that is correct. As again, these are overlapping entities. Now there are two technical terms: Post COVID-19 conditions or PCC, and that's largely equivalent to Long COVID. It includes both the direct in the indirect effects of the virus. The second term that is commonly used is post-acute sequelae of SARS-CoV-2 infection. That's PASC, P-A-S-C, and that's confined to the direct effects of the of the virus. And so we're going to have these overlapping definitions and we'll try to, you know, as we go forward with the implementation of the reports. to try to develop more of a consensus. But there are many different aspects to this complex condition.

[Dr Bibbins-Domingo:] Yes, this is a virus that we're we're dealing with right now in its ever-changing forms. And the sequelae of the virus also is complex. And this is a report, a set of reports that that strike me have implications for patients who might be suffering with this condition, for the health systems, for the clinicians who care for them, as well as all of us who who will be continuing to deal with the effects of SARS-CoV-2. Is there anything else that you would like to highlight for our listeners?

[Dr Levine:] Sure. A couple of things. You know, this is a very ambitious agenda and we have a lot of federal activity on both the research aspect as well as supports and services. There were 14 federal agencies involved in drafting the reports and as we address these challenges, it's going to need to be a public-private partnership with a whole-of-government approach, but also working with states and and local governments and public health authorities and then looking at working with the private sector. But again, the reports are just the beginning. As we look past the reports, we want to offer a holistic approach to addressing all of the work that is necessary across our nation. What matters most is what comes after the reports. We're going to work to advance the research as we implement the plan. We're going to look to improve the supports and systems and services that are necessary for individuals, for their families, and for our communities. Our Secretary, Secretary Becerra, always empowers us to think big, to really have a bold approach to these responses. He says, don't do anything mild. We want to take ambitious, bold approach with a whole-of-government response, working with all of our partners to really help people and help our nation as we as we look for resilience and recovery from COVID-19. And we work to help people that are that are impacted by COVID-19 and those with Long COVID.

[Dr Bibbins-Domingo:] Well, thank thank you very much. I think from the perspective of our audience, those sound like very important priorities. And it will be interesting and important to watch the response and the many sectors coming together and hopefully continued investment in this important area. Thank you so much for joining me today to to shed some light on these new reports that it sounds like we'll be important for many of our viewers here, and and thank you for your Viewpoint really outlining the strategy and approach and why these reports exist. I really appreciate you taking the time.

[Dr Levine:] Well, thank you very much. And it was it was really a pleasure.


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