About this episode:
Pharmaceutical executive Peter A. DiBiaso, MHA, a triathlete who has successfully completed the grueling Ironman, learned at age 49 he had early-onset Parkinson’s disease. He shares his experiences—and triumphs—in this episode.
What started as a small tremor in his right hand and a stiffness in his right ankle ended up changing his life.
It was a blow, but he knew what to do: The diagnosis brought his personal and professional life full circle. Five years later, he reports minimal disease progression. He is doing well and remains incredibly active. Other than well-managed medication, to what does he attribute his success so far?
- Staying fit and continuing to be an athlete. He is still running marathons and recently scaled Mount Kilimanjaro, the highest mountain in Africa.
- Engaging with patient advocacy groups—in particular, the Michael J. Fox Foundation. (In fact, his Kilimanjaro trek was part of a Team Fox effort to raise money for the foundation.)
- His ability to navigate the system.
He has also been involved in six clinical trials—both interventional and observational. He knew the value as an industry insider. Now, he appreciates the value from the patient perspective—and he better understands the frustrations patients face. It too often falls on the patients to initiate discussions about clinical trials. That’s fine for him, he says, but what about those who don’t know trials are available?
His professional life has focused on patient recruitment issues, so he brings a 360-degree perspective. Sponsors, he says, need to focus on more than the academic and clinical elements; they must address real-world issues and trial participants’ challenges—even those that seem minor, like parking.
It comes down to patient-centricity, he explains—putting patients at the center of the clinical research enterprise. It is becoming more common, but there’s still a long way to go.
Peter DiBiaso, MHA, is a consultant to drug development companies and has worked at Pfizer, Shire, Vertex, and IQVIA. He is married and has two children, and he and his family split their time between Paris and Boston.