Last week, the Food and Drug Administration announced that a drug previously not officially available to patients in the United States had been approved. Deflazacort, a corticosteroid, has been shown to be useful and life-prolonging for patients with Duchenne muscular dystrophy, a rare and fatal disease. Its U.S. launch has been delayed, however, after lawmakers questioned the dramatic price hike that came with its debut here. [More]
On July 20th, Julianna’s (delayed) Delta flight landed in Atlanta at 7:30pm, with a connecting flight scheduled for 8:05pm. Julianna, who has muscular dystrophy, missed the connecting flight because nobody came with a wheelchair until 8:05—the same time the connecting flight took off. To make matters worse, the plane crew told Julianna she might make the flight anyway if she stopped waiting for help and got off the plane right now, so she crawled down the stairs on her own. When the wheelchair came she was “wheeled into a back room and advised” that her plane had taken off. But that was just the first half of her ordeal, and the next eight hours only got worse.