Welcome to the Age of One-Shot Miracle Cures That Can Cost Millions
Gene therapy appears to successfully treat once-incurable patients like “bubble boy” Omarion Jordan. But progress like this doesn’t come cheap.
Kristin Simpson with her son, Omarion Jordan, whose gene therapy treatment has allowed him to leave hospital isolation.
Photographer: Tamara Reynolds for Bloomberg Businessweek
Omarion Jordan spent almost all of his first year of life in hospital isolation rooms. The nightmare began with what looked at first like diaper rash, a string of red marks that quickly spread across his body when he was just shy of 3 months old. Creams and ointments failed, as did the eczema shampoo treatment an emergency room doctor prescribed. Last July, hours after Omarion’s pediatrician injected his three-month vaccines into his thighs, the boy’s scalp began weeping a green pus that hardened and peeled off, taking his wispy brown curls with it. His head kept crusting over, cracking, and bleeding, and his mom, Kristin Simpson, started to panic. “His cries sounded terrible,” she recalls. “I thought I was going to lose him.”
She took her son back to the ER two nights in a row, only to have the doctors send them home each time to their apartment in Kendallville, Ind. “They thought I was some antivaccination person,” she says. “They looked at me like I had a foil hat on my head.” The next day, however, the boy’s pediatrician diagnosed pneumonia and sent them back to the hospital for a third time, at which point they got more attention. A battery of tests revealed a rare genetic disorder called severe combined immunodeficiency syndrome (SCID), better known as the “bubble boy” disease, which makes 40 to 100 American newborns each year extremely vulnerable to infections, like John Travolta in the old TV movie. Omarion, transferred to an Ohio hospital three hours away, was confined to an isolation room with special air filters.