Open Door Salon
"We Signed Her Out Against Medical Advice" — It Saved Her Life | Tom Whitehead & Tori Lee
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"Our transplant doctor at Hershey wrote us off and never spoke to us again. We signed her out against medical advice. And it saved her life." 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, they defied medical advice, enrolled in an experimental trial at CHOP, and Emily became cancer-free 23 days later. She's now 21 and 14 years cancer-free. Victoria (Tori) Lee was the 10th pediatric patient to receive CAR-T at CHOP. Diagnosed at 5, she went through four years of chemo and radiation before receiving CAR-T in 2013. Now 13+ years cancer-free, she's a health policy student presenting at ACRP on the bioethics of CAR-T access. In Today's Episode: * "We signed her out against medical advice — it saved her life" * Only 20% of eligible patients get CAR-T — 80% don't * "You're not sick enough yet" — when can patients get CAR-T? * 45,000 lives saved — from one patient to tens of thousands * Under $50K, under a week — manufacturing is advancing * 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" * Advice for parents and patients seeking cell therapy SHOW NOTES Tom Whitehead — Co-Founder, Emily Whitehead FoundationFather of Emily Whitehead, the first pediatric CAR-T patient. Author of "Praying for Emily." * Emily Whitehead Foundation (Co-Founder)LinkedIn: https://www.linkedin.com/in/tom-whitehead-08ba32102 [https://www.linkedin.com/in/tom-whitehead-08ba32102] Victoria (Tori) Lee — CAR-T Survivor | Health Policy StudentThe 10th pediatric CAR-T patient at CHOP. 13+ years cancer-free. * Emily Whitehead Foundation (Patient Advocate)Story: https://www.emilywhiteheadfoundation.org/patient-stories/tori-lee/ [https://www.emilywhiteheadfoundation.org/patient-stories/tori-lee/] Resources:Emily Whitehead Foundation: https://www.emilywhiteheadfoundation.org/ [https://www.emilywhiteheadfoundation.org/]CHOP Cancer Immunotherapy: https://www.chop.edu/centers-programs/cancer-immunotherapy-program [https://www.chop.edu/centers-programs/cancer-immunotherapy-program]"Praying for Emily" (Book): Free to patients and caregivers ✨ Support the Mission: The Emily Whitehead Foundation helps families find life-saving trials and advocates for wider access to cell and gene therapies.👉 Learn more or donate: https://www.emilywhiteheadfoundation.org/donate [https://www.emilywhiteheadfoundation.org/donate]
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