CAR-T patient pioneer Emily Whitehead is ready for a new identity

JThe Food and Drug Administration approves dozens of cancer drugs each year, but the vast majority of them offer incremental improvements. A treatment can shrink tumors in a third of patients or extend survival by a few months, and a company can still haul billions.

The results were far more groundbreaking when, at age six, Emily Whitehead became the first child to receive CAR-T cell therapy, in which researchers arm a patient’s own immune cells against their cancer. Whitehead’s therapy nearly killed her, but it managed to kill her cancer, paving the way for the approach to spread widely.

In the decade since, Whitehead’s healthy, ordinary childhood — captured each year in a photo his family releases of Whitehead holding a chart marking eight, nine, 10 years cancer-free — has been a public reminder of what that state-of-the-art treatments can sometimes reach.

For Whitehead, her role as a CAR-T recipient brought her a unique form of fame, for an event she barely remembers.

“It feels a bit like a double life, because I will be going to these different conferences and speaking,” she told STAT Breakthrough Summit Wednesday in San Francisco. “And then the other time, I’m in high school in my hometown.”

Whitehead has been active in promoting immunotherapy, co-founding a foundation with his parents who supports the development of new CAR-Ts. Her family also helps people around the world who need help accessing the medicine for their children. And she published a book with her parents, “Praying for Emily”. Speaking on stage with her father, Tom Whitehead, she said it brought her happiness to meet patients who have since received the same treatment and gone on to live healthy lives.

She also said this year could be the last her family posts a photo on the board. The date is normally May 10, the anniversary of the day her doctors first declared her cancer free. It was almost 11 years ago.

Emily Whitehead speaks at the 2023 STAT Breakthrough Summit.

She just turned 18 on Tuesday and will graduate from high school on May 27. Next, she plans to go to Penn State and study environmental science.

“I still want to be a part of this and speak out and raise awareness,” she said. But while her experience with cancer and CAR-T will always be part of her story, “I also think it’s time for me to start my own path and figure out, you know, what I want to do.”

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