Johnny Ponce - Clinical Trials Participant Story
He wanted in as soon as he learned he’d only have to take Fondaparinux Sodium (Arixtra) once-a-day, versus an alternative drug’s twice-a-day regimen. “Any kid would rather take one shot than two,” says Johnny, now 18. Beyond that practical advantage, he also liked the idea of being part of a scientific experiment that could help generate valuable information about the drug and its impact. Johnny took part in the study of Fondaparinux directed by Guy Young, MD, director of the Hemophilia Treatment Center in the Children's Center for Cancer and Blood Diseases and a leader in pediatric thrombosis research. Before Dr. Young’s investigation, no one had looked at the safety and efficacy of Arixtra in pediatric patients. “I wasn’t worried about trying it,” says Johnny. “I knew that the drug had already been used by adults, and I was older, too, by Children's Hospital standards.” His mother, Maria Aguilar, had no reservations about her eldest son being part of a clinical trial. “If we can help other families the way we’ve been helped, we want to do whatever we can,” she says. “Thanks to patients like Johnny and their families, we’re able to expand our knowledge about promising new therapies and bring them to more children,” says Dr. Young. “Their contributions are enormous.” Johnny developed a blood clot after being diagnosed with leukemia at Children's Hospital in November 2007 — a diagnosis that turned the young athlete’s world upside down. He remained on the anticoagulant 11 months, then asked to be taken off so he could resume playing football and baseball. However, within four months, another clot appeared, and he had to quit sports and resume taking Arixtra. Johnny’s treatments for leukemia ended this February. He’s now attending Citrus College with an eye toward transferring to Azusa Pacific University to major in nursing. He plans to specialize in pediatric oncology. “I want to be the nurse that the kids with cancer can relate to, the one who’s been through what they’re going through.” |
For 16-year-old Johnny Ponce, deciding whether to participate in a clinical trial of a new anticoagulant medication at Children's Hospital Los Angeles was a no-brainer.