Long COVID and Health Inequities: The Role of Primary Care

Policy Points

• An estimated 700,000 people in the United States have “long COVID,” that is, symptoms of COVID‐19 persisting beyond three weeks.
• COVID‐19 and its long‐term sequelae are strongly influenced by social determinants such as poverty and by structural inequalities such as racism and discrimination.
• Primary care providers are in a unique position to provide and coordinate care for vulnerable patients with long COVID.
• Policy measures should include strengthening primary care, optimizing data quality, and addressing the multiple nested domains of inequity.

The pandemic has highlighted and exacerbated health inequities in both acute coronavirus disease 2019 (COVID‐19) and its longer‐term sequelae. ¹ , ² , ³ , ⁴ Symptoms of COVID‐19 persist in approximately one in 10 patients. ⁵ Acute symptoms include shortness of breath, cough, myalgias, disturbances in the sense of taste and smell, fatigue, fever, chills, and, less commonly, rhinitis and gastrointestinal symptoms. By contrast, the term “long COVID,” coined by patients, refers to both postacute symptoms (lasting more than three weeks) and chronic symptoms (lasting more than 12 weeks). ⁶ Long COVID is a multisystem disease of unknown cause whose manifestations, while partially overlapping the acute presentation, vary widely among patients and are exacerbated by comorbidities and vulnerabilities (Box  ⁶ , ⁷ , ⁸ and (more rarely) in children. ⁹ At the time of this writing, the United States had more than 17 million diagnosed cases of COVID‐19, ¹⁰ , ¹¹ which translates into approximately 1,700,000 people with long COVID. This does not include the likely underreporting of COVID‐19 cases, the proportion of which in one study ranged from one in three to one in 406. ¹² The implications for health services are substantial. Given the heterogeneity in definitions of long COVID and the lack of centralized registries of patients with the disease, those who might suffer from long‐term symptoms might mistakenly be recorded as recovered.Box 1Some of the Many Manifestations of Long COVID ⁶ , ¹³ , ¹⁴ , ¹⁵

The Lived Experience Symptoms may be continuous or fluctuating Fatigue Breathlessness Cough Nonspecific chest pains (“lung burn”) Palpitations or dizziness Neurocognitive difficulties (“brain fog”) Abdominal pains Muscle pains Hoarseness Skin lesions, especially chilblain‐like on the extremities (“COVID toe”) Mood swings

Clinical Examination and Tests May identify signs of past infection, active inflammatory disease or systemic complications, including Fever Positive antibody tests for COVID‐19 (but absence of evidence of infection does not exclude long COVID) Abnormal blood panel (e.g., white cell count, C‐reactive protein, brain natriuretic peptide, troponin, D‐dimer) Thrombo‐embolism (coronary, pulmonary, cerebral) Cardiac disease: myocarditis, pericarditis, dysrhythmias, heart failure Respiratory disease: pneumonitis, pleural effusion Neurological disease: stroke, seizures, encephalitis, cranial neuropathies Psychiatric conditions: posttraumatic stress disorder, depression, anxiety

Comorbidities and Other Relevant Concerns Note: not all new symptoms in a patient after COVID‐19 are due to long COVID Long‐term conditions (e.g., diabetes, heart failure, hypertension, asthma, epilepsy) New conditions unrelated to COVID‐19 (e.g., infection, suspected neoplasm) General health and well‐being including sleep status, nutritional status, sarcopenia, tissue viability Family circumstances (e.g., bereavement, unemployment, domestic conflict) Community resilience (e.g., loss of community resources or leaders, lockdown‐related restrictions)

Open in a separate windowThe natural history of long COVID appears to be gradual improvement over time in most cases, though recovery is typically measured in months. ⁶ , ⁸ Some patients require comprehensive assessment to exclude serious complications that might underlie their symptoms (notably, thrombo‐embolic disease of the lungs, heart, and brain), along with holistic clinical intervention and follow‐up. Patients without concerning symptoms should be supported but spared overinvestigation and overmedicalization. ⁶ , ¹⁶ , ¹⁷ Those who have survived admission to an intensive care unit and those with preexisting respiratory, cardiovascular, or cerebrovascular disease are likely to require more specialized and prolonged rehabilitation. ¹⁶ , ¹⁸ , ¹⁹ Given the paucity of evidence, it is currently unclear which of these issues related to long COVID are directly related to or caused by the disease itself and which are unrelated but may be made more difficult to treat owing to COVID‐19 and its after‐effects.Acute COVID‐19 is associated with significant racial disparities. ²⁰ , ²¹ , ²² , ²³ Black, Latinx, American Indian, Alaska Native, Asian, Native Hawaiian and Pacific Islander, and other non‐white racial groups in the United States are less likely to have access to testing; ²⁴ , ²⁵ more likely to be infected; ²⁵ , ²⁶ , ²⁷ , ²⁸ more likely to be hospitalized overall, ²⁹ though less likely to be hospitalized for any given level of severity, ²¹ and more likely to have an adverse clinical outcome (including death). ²¹ , ²⁷ , ³⁰ , ³¹ In addition, these racial groups are overrepresented in high‐risk occupations, including those with a higher risk of mortality from COVID‐19 (e.g., health and care workers, hospital porters and cleaners, bus drivers, transport workers), ³² are less likely to have adequate health insurance, ³³ and are less likely to receive compassionate end‐of‐life care. ³⁴ They are also more likely to be severely affected economically with job losses or lack of access to welfare. ³⁵ , ³⁶ While they are also more likely to have comorbidities and poor prognostic features (e.g., obesity), ⁴ , ³⁷ controlling for such factors reduces the differences in COVID‐19 mortality among ethnic groups and, in some cases, eradicates them altogether, ²⁰ , ³⁸ prompting calls to go beyond “biological” explanations. ³ , ³⁹ Later we discuss structural explanations for racial disparities in the onset and outcome of acute COVID‐19, summarized schematically in Figure 1. ² , ³ , ⁴ , ²⁰ , ⁴⁰ , ⁴¹ , ⁴² Open in a separate windowFigure 1Relationship Between Structural Inequalities and COVID‐19, Which Explains the “Confounders” in the High Mortality Rates for Some Ethnic GroupsAdapted from an original diagram by Bentley ² under Creative Commons License.Whereas the association between race/ethnicity and health inequity in acute COVID‐19 is now well established, the association of inequities with long COVID is relatively unexplored. ⁴ , ²² , ⁴³ To improve the care of vulnerable populations with long COVID, we need to (1) understand, acknowledge, and engage with the densely woven patterns of disadvantage that encumber those with postacute and chronic illness; ⁴⁴ (2) strengthen existing services, especially in ambulatory primary care; (3) optimize data quality and use those data strategically for planning and monitoring; and (4) provide access to resources in acknowledgement of the multiple nested domains of inequity operating at global, national, community, and individual scales. We will consider these approaches in turn.