SXSW 2024
Long COVID: learning from patients + looking at what's next
Description:
We will explore the state of Long COVID today—addressing the growing market developing therapeutics and tools, the status of the Long COVID advocacy movement, and what we can learn from HIV/AIDS. We will consider the accommodations and benefits the ~65M people living with Long COVID need to survive and thrive, and the importance of deferring to “long-haulers” when designing policies and support. We will also touch on barriers to accessing care, with a focus on marginalized populations, including low-income people, BIPOC, and LGBTQ+ folks, and the debated appropriateness of the term “patient.”
Related Media
Other Resources / Information
Takeaways
- The importance of centering lived experience / patient expertise in the growing Long COVID "market" — for researchers, apps, pharma, media and more.
- Understanding post-viral diseases, dynamic and/or invisible disabilities and best practices for accommodations and supports—in the workplace + beyond.
- How models of patient involvement, funding, benefits, treatment and care for HIV can be blueprints for addressing Long COVID & associated diseases.
Speakers
- Fiona Lowenstein, Independent Journalist, Independent
- Pato Hebert, Associate Arts Professor, New York University
- Miles Griffis, Independent Journalist, Independent
- Gabriel San Emeterio, Co-Founder and National Organizer, Strategies for High Impact
Organizer
Fiona Lowenstein, Journalist And Speaker, Self-Employed
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