Tom Whitehead is the co-founder of the Emily Whitehead Foundation and father of Emily Whitehead — the first pediatric patient in the world to receive CAR-T cell therapy. In 2012, when Emily was 6 years old and facing end-stage leukemia after two relapses, Tom and his wife Kari defied their doctors, signed Emily out against medical advice, and enrolled her in an experimental trial at Children’s Hospital of Philadelphia. 23 days after receiving CAR-T, she was cancer-free. Emily turns 21 in May 2026 and will be 14 years cancer-free.
Victoria (Tori) Lee was the 10th pediatric patient to receive CAR-T cell therapy at CHOP. Diagnosed with acute lymphoblastic leukemia in October 2008 just after her 5th birthday, Tori went through four years of chemotherapy and radiation — including two relapses — before receiving CAR-T in April 2013. Now 13+ years cancer-free, she’s a health policy major presenting at ACRP 2026 on the bioethical implications of CAR-T cell access.
In Today’s Episode We Discuss:
- “We Signed Her Out Against Medical Advice” — And It Saved Her Life
- Only 20% of Eligible Patients Get CAR-T — 80% Don’t
- “You’re Not Sick Enough Yet” — When Can Patients Access CAR-T?
- 45,000 Lives Saved — From One Patient to Tens of Thousands
- Under $50K, Under a Week — Manufacturing Is Getting Faster
- Trials Leaving the US — Patients Going to Italy, Beijing
- Fighting Insurance Denials with AI
- “Emily Is as Famous as Taylor Swift to My Daughter”
- “It’s Hard to Talk About the Worst Days of Your Life”
- “Hope Over Hospice” — The Foundation’s Mission
- Survivorship: Chemo, Radiation, and CAR-T Side Effects
- Advice for Parents and Patients Seeking Cell Therapy
Resources:
- Emily Whitehead Foundation
- CHOP Cancer Immunotherapy Program
- Tori Lee’s Story
- “Praying for Emily” Book — Free to patients and caregivers
✨ Support the Mission: The Emily Whitehead Foundation helps families find hope when they need it most — connecting patients to life-saving trials, funding research, and advocating for wider access to cell and gene therapies. Last year alone, they helped 40 patients find trials.
👉 Learn more or donate at emilywhiteheadfoundation.org/donate
