Ryan Prior is the author of the book The Long Haul: How Long Covid Survivors Are Revolutionizing Healthcare. A journalist, he was a fellow/journalist-in-residence at The Century Foundation, a Washington, D.C., think tank.
Q: What inspired you to write The Long Haul?
A: In many ways, this book was more than a decade in the making.
I first came down with a post-infectious illness, called myalgic encephalomyelitis (chronic fatigue syndrome), in 2006. I wrote about that experience for USA Today in 2012.
After college, I went on to travel the country directing a documentary about it called Forgotten Plague. I became a co-founding board member of the ME Action Network, which seeks to ignite global revolution for chronic illness equity. I served as a Stanford Medicine X ePatient Scholar, meeting dozens of leading health innovators from cancer to diabetes.
I was writing for the science and features desks at CNN when the Covid pandemic broke out in 2020. Everyone within the chronic illness community was vigilant that Covid would lead to long-term effects for millions of sufferers in ways that the mainstream medical establishment wasn’t ready for. At this same time, the massive attention on Long Covid could mark a paradigm shift in science, spurring a surge of research that could yield insights into why some people never recover.
As a patient advocate and a writer for an international outlet, I felt that I had a duty and platform to tell this story in a way no one else could.
Q: The writer Ed Yong said of the book, “Long haulers are the heroes of their own story, and this important book beautifully captures their struggle and their courage.” What do you think of that description?
A: I feel deeply honored that Ed was able to praise the book. He is one of my science writing heroes. With every story I write, I try to capture my subjects with dignity and present the best version of them to the world. This is of particular importance in portraying the marginalized: the poor, the incarcerated, the neglected, and the sick.
In striving to capture people’s core essences, journalism can transcend mere reporting and become more like literature. I did this in this book because I know the characters’ journeys intimately: telling their stories is a way of telling my own. I wanted to cast each person’s quest for health, for redemption, and for reclaiming their dreams in a global tapestry.
Q: How did you research the book, and what did you learn that especially surprised you?
A: As a journalist, I used standard reporting techniques in reaching out for interviews to patients, scientists, and doctors at the cutting edge. As the writing took place during the pandemic, nearly all the interviews were over Zoom, rather than in person.
On CNN's health team, I had spent much of my days pouring over the latest peer-reviewed literature on Covid. As a filmmaker and patient advocate outside of work, I was already well-acquainted with many of the key sources in the book.
I wasn't surprised that Long Covid was similar to many infection-associated chronic illnesses. Most of what I learned was about the publishing industry, and how it differs from the craft of daily journalism. By far and away, the hardest part of this journey was that I had to step away from a full-time job at a company that I loved.
Q: What do you see looking ahead when it comes to understanding Long Covid?
A: Right now, Sen. Bernie Sanders is working on legislation for the “Long Covid Moonshot,” which, if passed, would fund Long Covid research to the tune of $1 billion per year for ten years. This could transform the field and lead to treatments that could help patients get their lives back.
There is a tremendous and growing body of research showing that Long Covid is linked to viral persistence, microclots, viral reactivation, inflammation, gut dysbiosis, and dysautonomia. Much of that is not a surprise.
Similarly, I’m working with a team of leaders from a host of chronic illness patient groups (for Lyme, ME/CFS, dysautonomia, Long Covid, etc.) to create a bill that would authorize an Office of Infection-Associated Chronic Illness Research at the U.S. National Institutes of Health. Patients with these types of conditions have largely been neglected by mainstream medicine, and Covid could be the moment that ushers them into the fold.
Q: What are you working on now?
A: I am working with a co-producer in creating a pitch for a Netflix-style docuseries called Moonshots, which would profile cutting-edge innovators building new technologies that can exponentially transform human life for the better.
With each new project I take on, I try to ask myself how to
build on what I’ve done before, and expand to tell a story with 10 times more
impact than the previous one. We expect to begin talking with production
companies or streaming platforms this summer.
In July, I will start a master’s in public administration at the Harvard
Kennedy School, where I will be a William A. Starr Journalism Innovations
Fellow. I hope to continue developing new ways of telling stories and
transforming the whole journalism sector. I’m excited to pursue opportunities
with the MIT Media Lab as well as Harvard’s Shorenstein Center on Media,
Politics, and Public Policy.
Q: Anything else we should know?
Q: When I submitted the draft to the publisher in February 2022, I was dismayed because I felt like the story was only half complete, and didn’t yet have the happy ending I’d been craving. However, in the first few months of 2024, that has changed. With a leading senator harnessing the power of the Long Covid movement, we are seeing real possibility for the Long Covid moonshot to become reality.
Threaded throughout this book is a faith in democracy and in bottom-up or people-powered movements to organize and coalesce to lead necessary policy changes. Although it took a little longer than I’d hoped, I’m excited to say that for the chronic illness community, that goal may finally be within reach.
--Interview with Deborah Kalb
No comments:
Post a Comment