Wow! How? Every Cure

David Fajgenbaum was in medical school when his body began shutting down. A former college quarterback, he lay in bed, nearly helpless, as a priest read him his last rites. Then a doctor pitched a Hail Mary pass by administering seven different types of chemotherapy, hoping to blast Castleman disease out of Fajgenbaum’s body. It worked. He returned to medical school and to life.

But then he relapsed. Again, a combination of chemotherapy drugs brought him back from the brink of death. Fajgenbaum cycled in and out of his illness over and over, forcing him to face the reality that nobody was coming to save him with a miracle breakthrough. He was going to have to create it himself or die trying.

His story is one of grit, hope, and innovation. He is an embodiment of the four types of people you meet in the patient-led revolution for better medical care:

Seeker: When diagnosed with a mystery illness, he went on the hunt for information and did not give up.

Networker: He crowdsourced ideas from scientists, clinicians, and fellow patients, pooling insights and promising leads. As he writes in his book, Chasing My Cure, “Castleman disease patients had been waiting to come together to fight. They just needed a galvanizing force.”

Solver: He recognized the promise of repurposed drugs and patient-reported data as pathways to hope for rare diseases and started an organization, Every Cure, to meet the need. By documenting every step, he is able to share his playbooks with other organizations.

Champion: He is leveraging his position in the world as a clinician-scientist-MBA to extend people’s lives.

My copy of Chasing My Cure bristles with Post-it notes and dog-eared pages, but here’s the line that speaks to me today: “Medicine suffered when it was only the sum of its most technical and esoteric knowledge. It thrived when it was a team effort.”

Fajgenbaum’s TED talk was released this week: How nearly dying helped me discover my own cure (and many more). Don’t miss out. Watch it now:

Image: My snapshot of the 2017 New York Times article about David Fajgenbaum. Watch for when he uses the image in his TED talk!