Dr. Holbrook Kohrt, a hemophiliac who transformed his own chronic condition into a personal and public crusade for medical cures, died last Wednesday in Miami. He was 38.
The cause was complications of hemophilia, his brother Brandon said.
“A lot of physicians say that being sick opened their eyes to what it means to be a patient,” Dr. Kohrt told San Francisco magazine in 2014. “For me, that doesn’t really resonate — I’ve had hemophilia my whole life.”
Inspired by his own body’s ability to suppress disease, even as fellow hemophiliacs died from tainted blood transfusions, he pursued a medical career that coupled basic science with a clinical practice.
“It’s difficult to see cancer patients for whom effective therapies don’t yet exist,” he said in an interview with Stanford Medicine magazine in 2009. “So to be able to come back to the lab and work on what I was wishing for a few hours earlier, there can’t be anything more rewarding than that.”
Dr. Kohrt, who was known as Brook, had no family history of hemophilia — a disorder in which blood does not clot normally — but his parents became alarmed shortly after he was born when he developed mysterious bruises and bled profusely after his circumcision.
Child protection workers investigated, wondering whether he was being abused. Doctors discovered that his gene for a clotting protein known as Factor 8 was not functional.
Dr. Kohrt wore a helmet to guard his head against injury until he was 7. He began giving himself infusions about the same time, injecting himself with a lifesaving blood-clotting factor. (His second-grade teacher fainted when he demonstrated the process at show and tell one day, he said.)
Classmates ridiculed him. People with religious objections to transfusions spat at him. “To this day, I’ve never encountered so much bias and irrationally steadfast antagonism about a person doing what he needs to do to stay alive,” Dr. Kohrt said.
When he was 8, he began attending a summer camp specially equipped for hemophiliacs.
“About 80 percent of these kids got H.I.V.,” he told Stanford Medicine in 2013, referring to the human immunodeficiency virus, the virus that causes AIDS. “As a result, there are about 50 percent fewer hemophiliacs alive today than there would have been without H.I.V.”
The camp disbanded after eight years because only he and one other camper were left. (Since then, doctors have found ways to purify donated blood and to engineer the clotting factor genetically without depending on human donors.)
Holbrook Edwin Kidd Kohrt was born in Scranton, Pa., on Dec. 14, 1977, the son of Dr. Alan Kohrt, a pediatrician, and the former Mary Louise Kidd, a nurse. Both parents survive him. Besides his brother Brandon, he is also survived by his sister, Brieanne Kohrt; another brother, Barret; his stepmother, Lois Kohrt; his stepsisters, Jennifer Baldwin and Katherine Czapla; his stepbrother, Ryan Baldwin; and his girlfriend, Kendra Cannoy.
Dr. Kohrt earned a degree in molecular biology from Muhlenberg College in Allentown, Pa., and graduated from Stanford University School of Medicine. At Stanford, he was an assistant professor, conducted research at the Levy Laboratory on Lymphocytes and Lymphoma, and started his own laboratory in 2012 to study immune oncology.
He lived in San Francisco. He was undergoing treatment in the Caribbean last month when he developed an infection and was flown to a Miami hospital, where he died.
He recalled in an interview with The New York Times in 2013 that his immune system had naturally cured him of hepatitis C. “I wondered if there might not be ways to get the immune system to respond to cancer in that same way,” he said. “Today, that’s the focus of my research.”
He was asked whether anything about his condition drove him.
“Oh, yes, but it’s more philosophical than physical,” he replied. “I realized early on that I have to do everything I want to do as soon as possible, because I didn’t know what the future could be.”