This project took place in 2022. For our current HIV project, visit our HIV Complexities page.
The HIV sector has much to teach our nation about tackling pandemics – including the importance of meaningful involvement of those most affected. Long COVID advocates – including those rooted in the HIV community – have called for adoption of successful federal structures such as the National HIV/AIDS Strategy and the Ryan White CARE Program to address the needs for Long COVID care.
Yet, the COVID-19 pandemic has increased strain on the HIV community, which has already been facing a challenging political climate. However, the comprehensive and large HIV sector is resilient and creative, with an infrastructure supported by funding not seen in or across many other chronic health conditions.
Further, the HIV community’s vibrant history and present-day ecosystems of advocacy, as well as the direct involvement of HIV researchers, clinicians and community leaders in the COVID-19 response, provide a foundation on which to build strategic efforts for this next phase of dual pandemics.
Our project, designed for rapid implementation and analysis, was conducted in February/March 2022. It included an online survey in English and Spanish; a multi-panel, Zoom-based webinar in English, with Spanish and ASL interpretation, and CART transcription; and a leadership meeting for program sponsors to discuss findings, recommendations and next steps. In designing the project components, we ensured that each conveyed accurate, accessible information while also collecting data and perspectives.
Project components
Report: Findings, Recommendations, and Resources
Our May 2022 report includes our findings and recommendations, data from our survey, summaries and links to each segment of our webinar, and the proceedings of our leadership meeting.
Our Recommendations:
To face COVID-19 & Long COVID, the HIV sector should be resourced to:
- Ensure accurate and timely information, resources and best practices on COVID-19 across the HIV sector;
- Increase accessibility and expand disability justice in HIV community organizations, programs and practices
- Address Long COVID and other complex chronic conditions in PLHIV and the HIV community, through programming, advocacy and communications.
Webinar: HIV, Long COVID & COVID: Support, Info, Reflection
“Vigilance in the face of the COVID-19 pandemic is essential to ensure the health and well-being of those of us living with HIV. Even as we approach the tragic milestone of 1 million COVID-related deaths in the United States, there is still much to learn about COVID-19, including the impacts of long COVID and the impact of COVID-19 breakthrough infections. This is especially true for people living with HIV. Elected officials must do everything in their power to prevent future infections and take care of those experiencing long COVID, and we as a community must work to hold them accountable.”
– AIDS United, on our report
Related resource:
Long COVID in people living with HIV
Our Long COVID Essentials series includes two explainers on Long COVID in people living with HIV:
- People with HIV may be more at risk of Long COVID. Here’s what we know.
- Getting Long COVID care when you are living with HIV
All resources in this series have been reviewed by leading medical experts and are useful for patients, caregivers, and medical providers. Spanish translations are currently being produced; learn more on the Long COVID Essentials homepage.