Last week, the Food and Drug Administration approved two new gene therapies to treat sickle cell disease. Roughly 100,000 people in the U.S. live with the debilitating and painful blood disorder, most of whom are African American. One of these “milestone treatments'' is a drug using powerful gene-editing technology never before approved for human use. It can repair a mutation that produces sickle-shaped red blood cells that can lead to stroke, organ damage and premature death. 

But the millions of dollars the treatments cost is just one of the barriers facing patients like Jayla Eddins, a high school senior in Salem, and her mother, Jamie Eddins, who helps manage her daughter’s illness. Dr. Trisha Wong is an associate professor of pediatrics in the division of hematology and oncology at Oregon Health & Science University. They join us to talk about the physical and emotional toll of the disease as new breakthroughs emerge to treat it.