From the Chief Medical Officer: Leadership Considerations for Long COVID

February 28, 2023 | Marcus Plescia

Woman using her cell phone for a telehealth appointment with her doctorOne of the most challenging issues I faced in clinical practice was helping patients navigate chronic illness and disability. Some conditions were well understood with resources and support readily available. However, in many cases, symptoms were difficult to characterize, the underlying causes were unclear, and the role of depression and other mental health conditions as a primary or contributing factor were difficult to quantify. Many chronic conditions are associated with significant stigma and isolation. At the community level, behavioral health and other resources to support these conditions continue to be limited.

Such is the case with Long COVID. Respiratory and cardiovascular manifestations are generally well recognized and understood, but neurological and constitutional manifestations are more challenging to grasp. The overall burden of illness appears significant, but the long-term manifestations and implications of Long COVID are less understood. Public health officials have a significant opportunity to provide leadership on this issue through their own authorities, and by capitalizing on their influence in the public health and healthcare sectors.

Over the last few weeks, ASTHO has been convening subject matter experts from the Office of the Assistant Secretary for Health, Centers for Disease Control and Prevention (CDC), Council of State and Territorial Health Officials (CSTE), and the National Association of Chronic Disease Directors to discuss public health’s role in addressing Long COVID. Here, we’ll break down a few ways these experts believe that state public health officials can provide guidance and leadership.

Improve Data Collection and Surveillance

We quantify the need for public health interventions by developing systems to identify and monitor conditions. Having adequate and appropriate systems to monitor Long COVID prevalence and trends must be public health’s core function.

CSTE, CDC, and National Academies of Sciences, Engineering, and Medicine have convened groups to define and recommend approaches for developing these systems, while several states are experimenting with implementing systems of their own. We anticipate that Long COVID will be monitored through existing community surveys or secondary billing and clinical sources as opposed to case reporting or disease registries.

Public health leaders will need to foster public and political understanding and support of the role and applications of Long COVID surveillance. We will need to use public health authorities to promote public and clinical participation in these systems, as well as ensure there are adequate resources and data processing capacities such that information about Long COVID is robust and timely.

One clear opportunity for leadership will be to ensure our surveillance systems identify and address health disparities in populations heavily impacted by Long COVID. As such, we must routinely record and report race and ethnicity in these systems.

Promote Policies to Support Individuals with Long COVID

The symptoms and impact of Long COVID must be better defined to ensure that health insurance, disability benefits, and access to supportive resources—including covered telehealth visits—are readily available. Public health agencies can play a major role in addressing the healthcare and social needs of our communities. To better promote the recovery and wellness of people with Long COVID, public health agencies can coordinate with health care systems, community-based organizations, and other relevant support structures to provide necessary linkage to care.

Health officials can convene public and private insurers, healthcare system leaders, and medical provider associations to reach agreement on basic healthcare standards and coverage criteria for Medicaid, self-funded state employee plans, and commercial plans. They can also support the development of worksite, state, or federal policies that provide or expand disability benefits for individuals living with Long COVID. People whose Long COVID symptoms substantially limit one or more major life activities can be considered disabled under the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. Additionally, people with severe Long COVID conditions can qualify for Social Security Disability Insurance benefits to supplement lost income due to their disability.

Prioritize Long COVID Prevention

Ultimately, public health officials seek to prevent diseases and associated adversity, and the emerging science and evidence base provides powerful tools to prevent Long COVID. We know that Long COVID occurs less frequently among those who are vaccinated against COVID-19. Public health agencies should continue their efforts to ensure all eligible individuals are up-to-date with their COVID-19 vaccines, in combination with other non-pharmaceutical interventions.

Emerging evidence also supports the potential benefits of nirmatrelvir (Paxlovid) for reducing a variety of symptoms and post-COVID-19 conditions. Efforts could be made to increase access to Paxlovid and other antivirals for individuals with COVID-19 who are at risk for progressing to severe illness. Meanwhile, public campaigns can highlight the importance of timely antiviral treatment for eligible individuals.

On a positive note, recent data suggest rates of Long COVID may be decreasing and that among those with the condition, symptoms generally improve over time. However, Long COVID will clearly be with us well into the future. The individual impact has resulted in significant human suffering. The societal toll is reflected in decreased workplace productivity, higher healthcare costs, and reduced quality of life. The public health response to Long COVID will evolve as we learn more. But the time to act is now—to ensure we have the data to monitor the condition and the resources to help those who are affected.