There are helpful Long COVID advocacy organizations fighting for long-haulers, such as Survivor Corps, Body Politic, and Long COVID Alliance. Another advocacy group centered on the best interests of longhaulers that some may not be aware of is the C-19 Longhauler Advocacy Project (C-19LAP).*

What is C-19LAP?

According to the nonprofit’s website, C-19LAP is “dedicated to advancing the understanding of Long COVID and expediting solutions and assistance to Longhaulers and their families through advocacy, education, research, and support.”

The group’s leadership consists of COVID longhaulers who are committed to ensuring that no Long COVID sufferers fall through the cracks and fail to receive the care and support they need and deserve. C-19LAP founder and president Karyn Bishof says the group is based, in part, on comprehensive advocacy and education that cuts across both communities and the full spectrum of Long COVID-related illnesses. An indigenous single mother, Bishof was one of the first people with Long COVID, coming down with the condition in March 2020. With a background in science, medicine, and education, Bishof:

• Was chosen by the National Institutes of Health (NIH) to serve on its RECOVER Initiative Ancillary Studies Oversight Committee,
• Serves on the Long COVID Research Fund’s Advisory Board, and
• Received Dysautonomia International’s Amelia Moore Sparkle Award for Compassionate Advocacy in July 2022.

C-19LAP was started by patients in June 2020, early in the pandemic, when many clinicians were turning away people who were past the dangers of acute illness and who complained of chronic symptoms. Since then, the organization has become recognized for its comprehensive support of the Long COVID community, including advocating for the millions of long-haulers who are struggling with disabilities.

Accomplishments and future goals

C-19LAP’s work has been extensive, including for example:

• Co-writing the TREAT Long COVID Act
• Co-writing the $60 million appropriations request for Health and Human Services (HHS) to track and treat Long COVID
• Creating a Comprehensive Guide for Longhaulers and Providers
• Creating the COVID Competent Providers List
• Initiating multiple longhauler surveys
• Launching Facebook state and special population chapters

The organization’s future goals center on:

• Being able to provide financial assistance to Long COVID patients and families,
• Creating national patient and provider educational programs, and
• Partnering with patient advocates, case managers, and others to help Long COVID patients find local resources and benefits.

Getting involved

C-19LAP operates entirely on the efforts of volunteers and bases its advocacy on the feedback it receives from the Long COVID community. There are multiple ways in which your voice, experience, and passion can help the organization improve your circumstances and those of countless others with Long COVID. You can:

• Connect with the C-19LAP community on social media.
• Volunteer with the C-19LAP team.
• Share your story to help educate others.
• Donate badly-needed funding to support C-19LAP’s work, and patients in dire need.
• Recommend a provider who understands Long COVID-associated conditions (LCAC).
• Provide Long COVID media coverage and journalist contacts.

For more information, visit https://www.longhauler-advocacy.org (scroll to bottom to join their mailing list) or email contact@longhauler-advocacy.org. 

*C-19 Longhauler Advocacy Project. (n.d.). https://www.longhauler-advocacy.org/