Federal Policies Search for Insights and Solutions into Long COVID

October 18, 2024 | Catherine Murphy, Catherine Jones

Almost five years after the start of the COVID-19 pandemic, data show that nearly 23.3 million (or 7% of) adults in the United States have had Long COVID—a condition in which COVID symptoms persist after initial infection. These symptoms can span multiple organ systems and may include extreme fatigue, memory issues (brain fog), ongoing loss of taste and smell, fast/irregular heartbeat, and digestive problems. Long COVID can also cause or exacerbate existing autoimmune diseases, migraines, lung disease, and others. The federal government has been attentive to Long COVID since it was identified in 2020. Multiple initiatives have been created to shed more light on this condition and the path forward.

Long COVID High Risk Groups and Barriers to Care

Long COVID can occur in anyone who has been infected with COVID (children included), but some groups are at higher risk, including women, people with underlying conditions, those who experienced severe COVID-19 outcomes, and people of Hispanic ethnicity. Approximately one in four adults with a Long COVID diagnosis reported significant limitations to their daily activity.

Treating and ultimately curing Long COVID remains elusive and difficult to navigate. Long COVID patients often receive care from multiple specialists, which can result in significant time away from work and school, as well as complicating care coordination. Access to care is further challenged by proximity to providers, health insurance status, and other social determinants of health.

Governmental Responses to Long COVID

Since this condition was first identified, officials and lawmakers have been intentional in their response to Long COVID. In December 2020, NIH launched the Researching COVID to Enhance Recovery (RECOVER) Initiative to focus on the biological mechanisms of Long COVID and tailored therapies. Initial data shows a pattern of information that could result in missed diagnoses in underserved and minority populations, possibly reflecting the same factors that caused disparities associated with COVID-19. Additionally, in 2022, the Biden-Harris administration instructed HHS Secretary to coordinate federal agencies to develop an interagency national research action plan to advance aspects of Long COVID care, including prevention, treatment, workforce development, and Long COVID interventions.

In Congress, Long COVID has been an ongoing topic of conversation. This past January, the Senate Committee on Health, Education, Labor, and Pensions held a full committee hearing on improving both research and patient care. Testimony included patient, provider, and researcher perspectives to help inform committee action. In April, Chair Sanders (I-VT) sought comments on the draft legislative proposal that ultimately was introduced in September as the Long COVID Research Moonshot Act of 2024. This legislation would direct NIH to create a Long COVID database, advisory board, and grant process for clinical trials, ensure affordability of NIH-developed treatments, fund multidisciplinary clinics that provide comprehensive care, and develop best practices for care. In response to the April draft, ASTHO provided comments, including:

• Supporting strategies that assess medical and societal burdens of Long COVID.
• Encouraging the involvement of at least one state or territorial public health official on the NIH research advisory board.
• Ensuring participation from all health departments, including island jurisdictions, in the creation of a coordinated public education and outreach plan to increase awareness, patient and provider understanding, diagnostic criteria, and definition.
• Promoting policies to support people with Long COVID, including those who are considered disabled due to the condition.
• Prioritizing Long COVID prevention, including vaccinations and the use of antivirals like nirmatrelvir (Paxlovid). Both have been associated with a reduction of symptoms and post-COVID sequelae.

Senator Kaine (D-VA), who has been open about his ongoing battle with Long COVID, introduced the bipartisan, bicameral CARE for Long COVID Act, which is co-led by Sen. Young (R-IN). This legislation would provide support for research and provider education on the condition. In the FY25 House Labor, Health and Human Services, and Related Agencies Appropriations Bill, report language urges NIH to continue researching the complexities of Long COVID. In the Senate counterpart, the committee urges CDC to monitor and track the incidence of Long COVID for children and adults, as well as research efforts at NIH, ARPA-H, and AHRQ.

Prevention: The Key to Reducing Long COVID Cases

Though efforts to track, diagnose, and treat Long COVID are necessary to improve quality and equity of care moving forward, the best way to avoid new Long COVID cases is to prevent COVID infection. Even a mild or asymptomatic infection can lead to Long COVID. Public health systems and ASTHO will continue to advocate for policy that prevents Long COVID and supports those living with the condition, and will work to keep the public informed.