Calling on Congress to Increase Understanding of Long COVID

Since 2020, our knowledge of post-acute sequelae of SARS-CoV-2 infection (PASC), also known as Long COVID, has significantly grown. Currently there are more than 87 million survivors of COVID in the United States. It is estimated that 33% have PASC.

According to one study, one-third of patients diagnosed with COVID-19 developed psychiatric or neurological disorders within six months. The disorders included depression, anxiety, stroke, and dementia. In that same study, among patients admitted to an intensive care unit (ICU), the incidence of psychiatric or neurological disorder rose to an unprecedented 46%.

The Effects of Long Covid

Researchers have identified post-COVID health problems in many different organ systems, including the heart, lungs, and kidneys. Other issues identified have involved blood circulation, the musculoskeletal system, and the endocrine system. Gastrointestinal conditions, neurological problems, and psychiatric symptoms were also present.

A study examining more than 353,000 patients diagnosed with COVID-19 at the start of the pandemic found that they had twice the risk of uninfected people of developing respiratory symptoms and lung problems, including pulmonary embolism, and post-COVID patients aged 65 and older were at greater risk of developing kidney failure, neurological conditions, and most mental health conditions.

Another study found that after the first 30 days of infection, individuals with COVID-19 are at increased risk of cardiovascular diseases, including cerebrovascular disorders, dysrhythmias, ischemic and non-ischemic heart disease, pericarditis, myocarditis, heart failure, and thromboembolic disease.

Prioritizing Patient Health

Given the number of COVID-19 cases across the U.S., the impact of post-COVID symptoms is likely enormous, and without proper information sharing, patients could suffer devastating consequences and misdiagnoses. Additionally, understanding the core causes of PASC will make it easier for providers to identify patients who are more at risk of developing its chronic symptoms, and potentially providing early interventions.

There is considerable work to do to build knowledge around PASC, including:

 

1. Clarifying definitions and the language used to describe PASC symptoms
2. Enhancing research, data collection, and surveillance
3. Focusing on patient diversity in research and mitigating disparities in care
4. Defining outcomes
5. Educating medical professionals and patients about PASC
6. Developing clinical treatment guidelines and care coordination across primary care and several specialty providers

Taking Action

Several bills have been introduced in Congress to focus on these broad themes that could serve as a potential starting point for assessing this rapidly developing issue. Similarly, the Biden Administration directed federal agencies to develop the first-ever interagency national research action plan on PASC. The initiative is expected to advance progress in prevention, diagnosis, treatment, and provision of services, supports, and interventions for individuals experiencing PASC.

In the meantime, the National Institutes of Health (NIH) created the RECOVER Initiative to learn about the long- term effects of COVID. The RECOVER Initiative brings together patients, caregivers, clinicians, community leaders, and scientists from across the nation to understand, prevent, and treat PASC, including Long COVID. To learn more, visit recovercovid.org.

The nation’s health system must follow the science as it relates to researching and caring for people affected by PASC, relying on leading experts to lead the dialogue to ensure continued progress on key priorities and additional federal investment is made. The American Academy of Neurology has joined with other professional societies and consumer organizations, including the Brain Injury Association of America, to urge members of Congress to consider PASC a priority and ensure that individuals suffering from PASC can receive the timely care coordination they need.