By Landon Hall
How long have we known about sickle cell anemia? It’s been in the public consciousness for decades, but Dr. Diane Nugent drops a couple stats that are dumbfounding:
“In California, 12 percent of sickle cell patients are Hispanic,” she says of the disease that’s long been associated with African Americans. “In our Orange County clinic, it’s 30 percent Hispanic.”
The hereditary disease causes red blood cells to distort into a sickle shape, which can cause severe anemia, poor circulation to vital organs and spontaneous pain crisis, which over time can lead to an early death if not properly managed. Nugent, an expert in blood disorders, says California, remarkably, has one of the worst life expectancies in the country for sickle cell: age 43-47, compared with the national average of 61. Only a fraction of people with the disease have access to knowledgeable providers, so patients often end up in the ER, where hundreds of millions are spent each year to treat an acute crisis, instead of at a clinic where such complications can be prevented. “No one can hear those numbers without doing something,” she says.
Nugent, who’s head of the pediatric hematology division at CHOC Children’s and who founded the Center for Inherited Blood Disorders in Santa Ana, is helping to promote a bill in Sacramento, AB 1105, which would allocate $15 million over three years to open five sickle-cell clinics for adults who need access to care.
That Nugent is such a tenacious advocate for those with rare blood disorders is surprising when you learn that she was an art major in college, in the early ’70s. She was into drawing and print-making and photography. While she was a volunteer translator – she grew up in SoCal and speaks Spanish fluently – at a clinic in San Pedro, a colleague recommended she go into medicine. She had never even taken a science class. But she got accepted to med school and has never stopped being passionate about her work.
“I think that at some point, those paths open up and you know what you’re supposed to do and things align,” she says. “It was exactly the right combination for my creative interests and research and people skills, and the feeling I’m doing something good for people.”