“The Long Haul”: Inside the Patient Advocacy Revolution of the COVID Era (Part 1 of an #ADA2022 Special

OFF-KILTER with Rebecca Vallas

July marks the thirty-second anniversary of the Americans with Disabilities Act, or ADA, as it’s better known—the landmark civil rights law that promised equal opportunity and economic security for Americans with disabilities. As we’ve talked about a lot on this show over the years, as important as it is to celebrate how far we’ve come in the decades since the ADA became part of the fabric of American life, every time we hit the month of July, it’s even more important to acknowledge how far will still have to go to achieve the as-yet unfulfilled promises of the ADA.

And that’s why this July, Off-Kilter will be spending all month long having conversations with leaders from across the disability community—starting with a two-part special diving into the picture for the millions of Americans now living with “long COVID,” the incredible patient advocacy led by COVID long-haulers across the country, and how patient advocates with other chronic illnesses like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are teaming up with COVID long-haulers to push for research, policy change, and more.

And for part one of that two-part series of conversation, Rebecca sat down with Lisa McCorkell, cofounder of the Patient Led Research Collaborative; Netia McCrery, education director at the COVID-19 Longhauler Advocacy Project; and Ryan Prior, a journalist, a board member of ME Action, which works to build awareness about a condition called ME/CFS, and author of The Long Haul (forthcoming November 2022). They talk about their personal illness journeys, the stories behind their respective organizations, why patient advocacy is more critical than ever, and take on some of the myths and misconceptions about long COVID and ME/CFS and more.

Editor’s note: The Century Foundation is thrilled to have all three of those organizations—the Patient Led Research Collaborative, the COVID-19 Longhaulers Advocacy Project, and ME Action—as members of the Disability Economic Justice Collaborative, which you can learn more about at dejc.org.

For more:

• Learn more about and get involved with the Patient Led Research Collaborative, the COVID-19 Longhauler Advocacy Project, and ME Action
• Find out more about The Long Haul (forthcoming November 2022)
• And here’s a recent Washington Post article on how long COVID could change the way we think about chronic illness and disability