Professor Elizabeth Currid-Halkett recently wrote a moving essay for the New York Times, where she shared her son’s battle with Duchenne muscular dystrophy – a fatal neuromuscular disease – and her efforts to get her son, Eliot, a treatment giving him a more normal life.
The treatment, now known as Elevidys, helped Eliot walk upstairs and hop on one foot — which had previously been impossible. “Head in my hands, I wept with joy,” Currid-Halkett writes. “This was science at its very best, close to a miracle.”
But obtaining the treatment was a challenge. Currid-Halkett got help from USC Price School Dean Dana Goldman to navigate the process of convincing her insurer to cover the treatment’s high cost. Since the treatment does not yet have full FDA approval, insurance companies can refuse to cover treatments like Elevidys by claiming they are medically unnecessary or experimental.
- In her words: “Gene therapy is the future of medicine. But our bureaucracy and insurance companies should not hinder patients from receiving pioneering treatments that could transform their lives,” Currid-Halkett writes. “As parents, we are not asking for the moon. We just want our children to live.”