The Food and Drug Administration approves dozens of cancer drugs every year, but the vast majority of them offer gradual improvements. A treatment might shrink tumors in a third of patients, or extend survival by a couple months, and a company can still haul in billions.
The results were much more revolutionary when, at six years old, 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 almost killed her, but it successfully killed her cancer, paving the way for the approach to become widely available.
In the decade since, Whitehead’s healthy, ordinary childhood — captured annually in a photo her family releases of Whitehead holding a chalkboard marking eight, nine, 10 years cancer-free — has been a public reminder of what cutting-edge treatments can, sometimes, achieve.
For Whitehead, her role as an early CAR-T recipient has brought her a unique form of fame, for an event she can scarcely remember.
“It feels a little bit like a double life, because I’ll go into these different conferences and I’ll speak,” she said at STAT’s Breakthrough Summit in San Francisco on Wednesday. “And then the other time I’m in high school at my hometown.”
Whitehead has taken an active role in championing immunotherapy, co-founding a foundation with her parents that supports the development of new CAR-Ts. Her family also helps people around the world who need help getting access to the drug for their kids. And she’s published a book with her parents, “Praying for Emily.” Speaking on stage with her father, Tom Whitehead, she said it brings her happiness meeting patients who have since received the same therapy and gone on to live healthy lives.
She also said that this year might be the last that her family releases a chalkboard photo. The date is normally May 10, the anniversary of the day her doctors first declared her cancer free. That was almost 11 years ago.
She just turned 18 on Tuesday, and will graduate high school on May 27th. Next, she plans to go to Penn State and study environmental science.
“I definitely still want to be a part of doing this and speaking and spreading awareness,” she said. But while her experience with cancer and CAR-T will always be a part of her story, “I also think it’s time that I start on my own path and figure out, you know, what I want to do.”