A Pediatric Pioneer Says Research and Science Saved Her Life

One night in 2010 when she was 5, Emily was taking a bath at home when her mother noticed a multitude of bruises on her body — including 21 on her legs alone. That night, she woke up screaming in pain, and her parents took her to the emergency room. In short order, she was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL), a type of cancer of the blood and bone marrow, and began chemotherapy.

“After three relapses and 22 months of failed chemotherapy, they told my parents that it was time to take me home for hospice care,” Emily said. But her parents refused to give up, instead taking Emily to the Children’s Hospital of Philadelphia just as a clinical trial for chimeric antigen receptor (CAR) T-cell therapy was to begin. CAR T-cell therapy — developed in part with research funding from the National Institutes of Health — is a type of immunotherapy in which a patient’s T cells are genetically modified to fight cancer cells.

Emily became the first child with B-ALL to receive CAR T-cell therapy.  With the therapy, her immune system was “trained to eliminate my cancer,” Emily said. With the dosage for pediatric patients far from perfected, Emily wound up in a 14-day coma because the treatment was so taxing on her body. However, she pulled through.

Today, Emily is considered cured and is a student at the University of Pennsylvania where she studies English, creative writing, and photography. She is also the co-founder of the Emily Whitehead Foundation, which seeks to raise awareness about less toxic treatment options, such as CAR-T, for childhood cancers.

“Without the research, funding, and science that went into making CAR T-cell therapy, I wouldn't be here today,” Emily said. “It is so important to support scientific research and federal health programs to create new treatments like CAR-T, which mean spending less time in the hospital and have little-to-no side effects post-treatment."

Emily also knows firsthand the importance of access to health care and how programs such as Medicaid can make a crucial difference in whether patients get the care they need.

“I have depended on Medicaid throughout my treatment,” she said. “One of the only side effects from CAR-T was immunosuppression, which I continue receiving infusions for and which are covered by Medicaid. The planned cuts to the program mean that I, and millions of others, could lose access to life-saving treatments and medications.”