David Fajgenbaum, MD, MBA, MSc, is a groundbreaking physician-scientist, disease hunter, speaker and national bestselling author of the acclaimed memoir, Chasing My Cure: A Doctor’s Race to Turn Hope Into Action. Best known as the ‘doctor who cured himself’ (Doctor Cure Thyself, NY Times), Fajgenbaum went from being a beast-like college quarterback to receiving his last rites while in medical school and nearly dying four more times battling Castleman disease. To try to save his own life, he spearheaded an innovative approach to research and discovered a possible treatment that has put him into an extended remission. Now, he is spreading this approach to other diseases (His method could save millions, CNN) and sharing lessons he learned about living from nearly dying through Chasing My Cure, which has been translated into five languages and named one of the ‘Best Non-Fiction Books of 2019’ by Next Big Ideas Club.
1Could you briefly introduce yourself and explain why you founded the Castleman Disease Collaborative Network?
I am the co-founder of the Castleman Disease Collaborative Network (CDCN) and an Assistant Professor of Medicine at the University of Pennsylvania (PA, USA). I co-founded the CDCN in 2012 out of the urgent need to advance research and improve patient care for Castleman disease. Just 2 years prior, I was a healthy third year medical student, training to become an oncologist in memory of my mother. But things changed dramatically when I began suffering from inexplicable fatigue and night sweats. In a matter of weeks, my liver, kidneys and other vital organs were failing and I was read my last rites when my doctors didn’t think I would survive.
Miraculously, I survived — only to endure repeated near-death relapses from what would eventually be identified as the idiopathic multicentric form of Castleman disease (iMCD), a deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. It is so difficult to treat because so little research had ever been done. There were no diagnostic criteria, treatment guidelines, or FDA-approved treatments. And there was no research infrastructure to change things: no cell lines, registries or biobanks, no federal funding and no collaborative research network to advance understanding and treatment. When I relapsed, while on the only drug in development, I realized that the medical community was unlikely to make progress in time to save my life, so I turned my desperate hope for a cure into concrete action and established the CDCN to accelerate research internationally. I also began conducting research into the disease myself, looking for clues that could unlock a new treatment.
Together, we have made unprecedented progress. The CDCN led the development of the first diagnostic criteria ever and the first published treatment guidelines ever for iMCD. The CDCN has invested approximately $1,000,000 into research, which has led to over $7,000,000 in additional research funding for Castleman disease. These funds have led to discovery of the first new drug target in 25 years for iMCD and the first clinical trial of a second-line treatment ever in iMCD — a drug that I identified myself and has kept me in remission for over 6 ½ years. I shared my journey searching for cure and learning life-changing lesson along the way in my recently published memoir, Chasing My Cure: A Doctor’s Race to Turn Hope Into Action.