Tori Lee

Victoria “Tori” Lee is one of the first pediatric patients cured of cancer with CAR T-cell therapy, the tenth child to receive the treatment, and is now a patient advocate and health-policy student. Diagnosed with acute lymphoblastic leukemia at age five, she was a delayed responder to chemotherapy and later relapsed, undergoing years of high-dose chemotherapy and cranial radiation before receiving CAR-T at the Children’s Hospital of Philadelphia. More than a decade later, she remains cancer-free.

Lee appeared on Open Door Salon alongside Tom Whitehead, founder of the Emily Whitehead Foundation and father of the first pediatric patient cured with CAR-T, whose family her own family connected with early in her journey. Speaking as the patient rather than the parent, she described the difference between her experiences: four years of grueling standard treatment versus a single week dealing with the effects of CAR-T.

As a survivor now studying health policy, Lee has turned her experience into advocacy. She presents on the bioethical implications of CAR-T access for pediatric patients, and argues that the barriers to these therapies are as much structural and financial as scientific: treatment centers concentrated in big cities, and a single dose that can cost as much as a mortgage.

Her central message is that patients belong in the room where research and care decisions are made. Patient voice, she argues, should be built into the clinical side of healthcare from the start, and survivorship carries an obligation of reciprocity: to look back and help the patients coming up behind.