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NEW COVID RESOURCES: Translated Materials for Speaking to Your Healthcare Provider About Long COVID

Page five of the “How to Talk to Your Provider About Long COVID” resource contains locally-inspired graphics on the common symptoms of Long COVID.

Long COVID is a new illness that results from COVID-19 infection. It is also known as post-COVID conditions, long-haul COVID, and post-acute sequelae of SARS-CoV-2 infection (PASC). It is broadly defined as signs, symptoms, and conditions that continue or develop after acute COVID-19 infection and that last four or more weeks with no other explanation. Long COVID can affect any organ or organ system, resulting in a wide range of symptoms. It also affects everyone differently, making diagnosis challenging. In addition to the symptoms, the severity, recovery, and even treatment will look different for each individual. 

Long COVID was first described by patients experiencing prolonged symptoms in the early months of the pandemic. The term was even coined by a patient, Dr. Elisa Perego, who began tweeting about her experiences. In a 2020 paper by Felicity Callard and Elisa Perego, published in the peer-reviewed journal Social Science & Medicine, Callard and Perego describe Long COVID as having “a strong claim to be the first illness created through patients finding one another on Twitter,” moving from patients to media, and finally to formal clinical and policy channels. Four years later, patient advocacy on Long COVID has amplified this new condition to be prioritized by healthcare providers, researchers, and policymakers alike.

In the same paper, Callard and Perego point out how discrimination helps to explain why patients of marginalized communities were “denied platforms to speak on a disease [Long COVID] that also happens to compound discrimination” (Callard, F. & Perego, E., 2020). During the early days of the pandemic in Hawai‘i, Native Hawaiians, Pacific Islanders, and Filipinos were disproportionately impacted by COVID-19. They experienced higher rates of COVID-19 cases and deaths compared to their share of the state population and other ethnic and racial groups. At the same time, these populations have been historically marginalized and continue to face challenges with access to care. A recent longitudinal study by O’Laughlin et al. (2024) published in Frontiers in Public Health found ethnic and racial differences in Long COVID outcomes, with Black, Indigenous, and People of Color (BIPOC) more likely to report poorer outcomes than their non-Hispanic white peers. This highlights the importance of Long COVID education and resources for marginalized ethnic and racial populations in Hawai‘i.

In response to this need, HIPHI developed a new material to guide patient conversations with their healthcare providers. Long COVID is still a relatively new condition that can be confusing to navigate, especially for patients whose first language is not English. The material contains step-by-step instructions and tips for before, during, and after the appointment. This five-page guide is now available in the following languages: Chinese, Chuukese, Ilokano, Hawaiian, Japanese, Marshallese, Tagalog, and Samoan. You can find this resource under the materials section in our COVID-19 tab.

Sairel Labasan, MPH

Sairel Labasan, MPH

Program Manager: COVID-19 Projects Liaison
May Rose Dela Cruz, DrPH, MPH

May Rose Dela Cruz, DrPH, MPH

Director of Health Equity & Research
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