‘That’s $425,000 right there’ — the anxious launch of a gene therapy with a record sticker price
BOSTON — The trouble had started over a decade ago, when the Hogans noticed something wasn’t right with their son Jack. As a baby, he would spend hours staring into the lights in his nursery. Later, he sometimes walked into walls or fell down the stairs. When they asked him to pick up his toys, he wouldn’t — not because he didn’t want to, it turned out, but because he didn’t have the peripheral vision with which to see them strewn across the floor. They soon found out he was night-blind, too.
This past Sunday, his parents drove him five hours from New Jersey to Boston in the hope that he might regain some of his vision. On Tuesday, he was to be the first person in the U.S. to receive a gene therapy for a rare inherited disease since the treatment had hit the market.
Jack is 13 now — a smiley kid with blond hair and taped-together, blue-rimmed glasses — and his family had been anticipating this moment for years. They’d monitored the painstaking progression of the . They’d recorded the evening news on the day last December when the drug got . And they’d watched as the price was at $850,000 for both eyes — a record price so high that Spark Therapeutics worked out a way for
