While many try to move on from the COVID-19 pandemic, the virus lingers on for some. Some people who had COVID developed a chronic disorder that affects the entire body, known as Long COVID. According to CDC data, roughly 17 million adults and 1 million children experienced Long COVID in 2022. With more than 200 identified symptoms, Long COVID remains poorly understood and overlooked in medicine.
Recognizing the urgent need for more information, NYHealth grantee Long COVID Justice (LCJ) is increasing medical information about Long COVID and advocating for people experiencing Long COVID and other chronic illnesses.
LCJ used NYHealth funding to conduct a needs assessment of people with Long COVID focused on what is often overlooked by public institutions: social needs, care needs, and stigma. LCJ partnered with Long COVID advocacy groups, grassroots organizations, clinics, and providers to conduct outreach to people living with Long COVID, focusing on those disproportionately affected and whose voices have largely been left out, including people living with HIV/AIDS, young people living with chronic illnesses, and transgender, and gender non-conforming people.
“This needs assessment project is also an organizing project; we’re building relationships with and amongst community-based organizations and patient populations,” said Emi Kane, LCJ Co-Director. “We’re creating a really solid foundation for future work.”
“We are also very involved in elevating patients’ voices and narrative change so that people get a better understanding of the lived experience of people living with Long COVID and associated conditions,” explained Gabriel San Emeterio, LCJ Senior Fellow and Co-Founder.
Participants reported health care providers sometimes overlooked COVID as a significant health event, resulting in underreporting on electronic medical records and affecting care and treatment. By providing additional information and resources to providers and patients, LCJ hopes to improve care plans and broaden community awareness for patients.
LCJ developed a fact sheet with basic information about COVID and Long COVID that helps people with a misunderstood condition navigate health care systems and advocate for themselves. Additionally, LCJ partnered with The Sick Times to help increase awareness about COVID and Long COVID. The partnership used evidence-based resources and reporting to address misinformation in the community.
LCJ is hopeful that Long COVID will attract more resources amid the growing call for a comprehensive understanding of what patients with complex chronic illnesses are experiencing. “There is a long history of [complex chronic illnesses] being underfunded, misunderstood, and overlooked. We are using the latest crisis to draw attention to much larger problems that have existed in society for a long time,” said San Emeterio.
To continue building momentum, LCJ is launching an action plan with policy recommendations and outlines for implementation by engaging community networks. The action plan will include a publicly available, easy-to-use tool that provides suggestions for improving care systems to support people living with Long COVID.
Learn more about Long COVID Justice’s efforts here.