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5 Things You Should Know About Long COVID
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Key Takeaways
- Long COVID symptoms are diverse, affecting multiple organ systems, complicating diagnosis and management, and often resembling other illnesses.
- Higher risk groups include women, Hispanic and Latino individuals, and those with severe initial COVID-19 illness, exacerbated by health inequities.
In the current landscape of vaccine skepticism and misinformation, it is important to understand the full impact of long COVID on quality of life, especially among vulnerable populations.
Long COVID, also known as postacute sequelae of SARS-CoV-2 infection (PASC), is a complex and serious illness that can result in chronic conditions requiring comprehensive care and, in some cases, lead to long-term disability.1 For many, the symptoms of long COVID persist for weeks, months, or even years after their initial COVID-19 illness, significantly impacting their quality of life.
Therefore, understanding long COVID is essential to supporting affected patients and navigating the operational and economic challenges it poses to health care systems. Here are 5 things every managed care professional should know about long COVID.
1. Symptoms and Severity
Long COVID manifests through a diverse array of symptoms that range from mild to severe and often resemble those of other illnesses, making it challenging to diagnose and manage.2 While many people report symptoms such as fatigue, brain fog, and postexertional malaise (PEM), over 200 symptoms have been identified, affecting nearly every organ system. Commonly reported issues include difficulty breathing, chest pain, headaches, digestive problems, and changes in taste or smell. Additionally, long COVID can lead to multiorgan effects, including complications such as diabetes, heart conditions, or neurological disorders.
Some individuals experience clusters of symptoms that are hard to explain or manage, leading to delays in diagnosis and treatment. These challenges are further compounded by the absence of a definitive laboratory test for long COVID and the stigma or misunderstanding that patients often encounter. Moreover, symptoms of long COVID may overlap significantly with those of other poorly understood illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
2. At-Risk Populations
While anyone who contracts COVID-19 can develop long COVID, certain groups face a higher risk based on demographic, health, and social factors. Women, Hispanic and Latino individuals, and those who experienced severe COVID-19 illness—especially requiring hospitalization or intensive care—are disproportionately affected. A study published in JAMA Network Open showed that undocumented Latinx immigrants, who make up 7% of the US population, face a disproportionate burden of long COVID.3 These individuals were found to be more likely to be uninsured and had less access to primary care compared with the other groups. Additionally, they had limited knowledge about long COVID, with only 11.1% understanding the condition.
Adults aged 65 or older, individuals with underlying health conditions, and those who were unvaccinated are also at elevated risk.1 Health inequities further exacerbate the challenges faced by at-risk populations. Social determinants such as disability, economic disadvantage, and geographic barriers disproportionately impact certain groups, increasing their likelihood of negative health outcomes and greater burdens from long COVID.
3. Testing and Diagnosis
Diagnosing long COVID is complex, as it is not a single illness and lacks a definitive laboratory test. A National Institutes of Health (NIH)–supported study published in Annals of Internal Medicine highlighted how challenging it can be to identify and diagnose a novel illness such as long COVID, with the authors suggesting that novel biomarkers that can distinguish the condition from other illnesses are needed.4
“Our challenge is to discover biomarkers that can help us quickly and accurately diagnose long COVID to ensure people struggling with this disease receive the most appropriate care as soon as possible,” said David Goff, MD, PhD, director for the Division of Cardiovascular Sciences at the NIH’s National Heart, Lung, and Blood Institute, in a statement.5 “Long COVID symptoms can prevent someone from returning to work or school, and may even make everyday tasks a burden, so the ability for rapid diagnosis is key.”
Depending on the nature of the symptoms, providers may use blood tests, chest x-rays, or CT scans to detect inflammation or structural changes in the lungs and other organs.6 Lung function tests are often performed to assess respiratory capacity, while electrocardiograms or echocardiograms may help identify heart-related issues.
4. Effective Management Approaches
Managing long COVID requires a personalized approach, as no single treatment addresses all aspects of the condition. Health care providers may use a combination of therapies to alleviate symptoms and improve quality of life. Medications can target specific symptoms like cough, headaches, anxiety, or depression and may address underlying causes, such as blood clots, when identified. Innovative treatments like stellate ganglion blocks or olfactory retraining may help restore lost senses of smell and taste.
Physical therapy and pulmonary rehabilitation programs are beneficial for addressing pain, mobility challenges, and breathing issues, while counseling provides emotional support to cope with the psychological toll of chronic illness. Successful management often involves trial and error to determine the most effective strategies for each patient’s unique needs.
5. Prevention Strategies
Preventing long COVID begins with reducing the risk of contracting COVID-19 itself.7 Staying up to date on COVID-19 vaccinations is the most effective strategy, significantly lowering the chances of severe illness, hospitalization, or death.
However, a new poll by the Pew Research Center found 60% of individuals said they are “probably not” going to “get an updated vaccine.” Just less than 25% said they “probably” will get a booster, and 15% said they have already received the latest shot, according to The Hill.8
The findings come as the CDC advises individuals 65 years and older or those who are immunocompromised to consider a second dose of the latest COVID-19 vaccine.
Andrew Pekosz, PhD, a professor at the Johns Hopkins Bloomberg School of Public Health, stated in a recent media briefing that this year's newly formulated vaccines, released over the past 2 months, are a "fairly good match" to the dominant variants currently circulating, according to The Hill.9
Meanwhile, President-elect Donald J. Trump has chosen Robert F. Kennedy Jr, known for his history of antivaccine advocacy, to head the HHS in his upcoming administration.8 Kennedy has previously voiced strong opposition to the COVID-19 vaccine and was banned from Instagram in early 2021 for spreading vaccine misinformation.
Additionally, core prevention measures include practicing good hygiene, improving indoor air quality, and staying home when experiencing respiratory symptoms to prevent spreading illness.7 Prompt testing and early treatment are crucial for those at higher risk of severe outcomes, as timely intervention can reduce complications.
Other precautions, such as wearing masks and maintaining physical distance, are particularly beneficial during periods of high transmission or when interacting with individuals at increased risk. By adopting these strategies, individuals can protect themselves and others, reducing the likelihood of long COVID.
References
1. Long COVID basics. CDC. July 11, 2024. Accessed November 21, 2024. https://www.cdc.gov/covid/long-term-effects/index.html
2. Signs and symptoms of long COVID. CDC. July 11, 2024. Accessed November 21, 2024. https://www.cdc.gov/covid/long-term-effects/long-covid-signs-symptoms.html
3. Grossi G. Data show undocumented Latinx people face disproportionate burden of long COVID. AJMC®. October 17, 2024. Accessed November 21, 2024. https://www.ajmc.com/view/data-show-undocumented-latinx-people-face-disproportionate-burden-of-long-covid
4. Erlandson KM, Geng LN, Selvaggi CA, et al. Differentiation of prior SARS-CoV-2 infection and postacute sequelae by standard clinical laboratory measurements in the RECOVER Cohort. Ann Intern Med. 2024;177(9):1209-1221. doi:10.7326/M24-0737
5. Routine lab tests are not a reliable way to diagnose long COVID. NIH. News release. August 12, 2024. Accessed November 21, 2024. https://www.nih.gov/news-events/news-releases/routine-lab-tests-are-not-reliable-way-diagnose-long-covid
6. Long COVID. Cleveland Clinic. Accessed November 21, 2024. https://my.clevelandclinic.org/health/diseases/25111-long-covid
7. How to protect yourself and others. CDC. July 12, 2024. Accessed November 21, 2024. https://www.cdc.gov/covid/prevention/index.html
8. Suter T. Most say they probably won’t get updated COVID vaccine: Survey. The Hill. November 20, 2024. Accessed November 21, 2024. https://thehill.com/policy/healthcare/5000039-most-wont-get-updated-covid-booster-survey/
9. Martichoux A. Is this year’s COVID booster a good match for new variants? The Hill. November 20, 2024. Accessed November 21, 2024. https://thehill.com/homenews/nexstar_media_wire/4914711-is-this-years-covid-booster-a-good-match-for-new-variants/
