David Fajgenbaum toes the line between patient and doctor. After growing up with a physician as a father, Fajgenbaum chose to follow in his footsteps. His most important lessons came not from the textbooks but from his lived experiences. In the middle of medical school exams, he began to experience a strange set of symptoms. While normally cool headed, he told his friends he thought he was dying, and he wasn’t far off. His organs were shutting down, causing his first near-death episode. He was later diagnosed with Castleman’s disease, only to find there were no effective treatment options and very few experts. He realized his only shot was to make the community and communication channels himself, becoming his own medical expert. Now he’s written a new book about his medical odyssey, Chasing My Cure, which he talked about on NPR’s Fresh Air to Dave Davies. In his interview, he discusses how he’s gone on to discover a medication that works for him and many others with the disease, and in his latest work, redirect that information to build a database on COVID-19.
His First Near-Death Episodes
David described the days before his first near-death experience when he was in his 3rd year of medical school, and apparently healthy. Suddenly, he felt more tired than usual, with aches and lumps and abdominal pain. He was busy with exams and decided it could wait, going in a couple days later. He said,
“I’ll never forget the doctor coming in the room and saying, ‘David, your liver, your kidneys, your bone marrow, your heart, and your lungs are shutting down. We have to hospitalize you right away.’ And they did, and over the course of the next few days i became deadly ill. They admitted me to the intensive care unit where I had a retinal hemorrhage that made me blind in my left eye, i gained 70 pounds of fluid, drifting in and out of consciousness, and I required transfusions just to keep me alive.”
He recovered, but he was rattled by the severity of the experience and the lack of answers from medical professionals. He was in severe pain, exhausted, and confused due to organ failure. He grew fearful, knowing this illness was very severe, likely deadly. Not too long after, he got his diagnosis: Castleman disease.
“I pulled my phone out and I googled it and I was terrified. I found a wikipedia page with one study that said, 80% of patients don’t make it two years post-diagnosis.”
The next years were littered with four similar episodes of multiple organ failure a number of times. They were so severe his family said their goodbyes and a priest read him his last rites. Thankfully a cocktail of seven chemotherapies saved his life on multiple occasions, but they knew this would always be a temporary fix. For Fajgenbaum, that wasn’t enough. He said,
“When you have a deadly illness, you don’t really have time for all of those stars to align. So I learned pretty quickly the most important thing that I could do would be to try to align the stars. To actually try to get all these problems, solutions, resources lined up so we could make as much progress as we could.”
Building the Castleman Disease Collaborative Network
Fajgenbaum knew that his treatment could not come before the disease was researched, and that would require gathering patient data to create a more complete picture of the disease. There were very few experts and they were not collaborating; no progress was being made towards a cure.
“When you have over 10,000 different diseases, you can’t expect every doctor to know everything about every disease. But that’s not actually the problem, the problem isn’t that every doctor doesn’t know everything about every disease, the problem is that for some diseases, no doctors know anything about those diseases, and Castleman really falls more into that category. Where there are just a few physicians and researchers who have really any idea at all about the disease.”
Fajgenbaum instead sewed together a network via crowdsourcing and research compilation to draw together findings on the disease. While he was compiling official data, he also was creating his own- he was one patient he had total access to. Fajgenbaum was gathering data on himself when he went into his fifth life-threatening episode. This time, he was engaged and his heart was set on making it to his wedding day. He said,
“When I got out of the hospital, I was able to go back to all those samples I’d been storing on myself and performed a series of experiments where, from within my experiments, I found this pattern that suggested this one communication line in the immune system called the mTOR pathway was highly activated. And what was so exciting about finding this communication line turned on is that there is a drug that was developed 30 years ago that’s really good at turning it off. It’s called sirolimus.”
Fajgenbaum was the first Castleman patient ever to try the drug. As an over the counter drug, other Castleman patients could try it too without official studies, and they found the drug helped about 1/3 of Castleman’s patients. Most importantly though, patients with the disease have been drawn together to know of this option, and others that may follow.
Castleman’s, Crowdsourcing, and COVID
Fajgenbaum’s focus became a lot less niche in 2020, when the world was rocked by the global pandemic, COVID-19. After spending a most of a decade becoming an expert on his own rare disease, he quickly spotted the similarities between the mechanics of Castleman and the novel virus.
“And so with this similarity between [the diseases] at the very basic mechanism, what drives the deadliness of COVID-19 is almost identical to what makes Castleman disease so deadly, it’s these – the cytokine storm.”
He realized he couldn’t wait around for other researchers when his own expertise could aid coronavirus research. He also noticed that like Castleman, the researchers needed more robust communication. The doctor started the COVID-19 Registry of Off-label & New Agents, a database to monitor all the drugs being experimented on the novel virus. Already they’ve found 150 unique drugs had been trialed, and have included data from 11,000 patients. He said,
“You know, what we really want to do with this corona project is to map out everything that’s being tried, to put in one place all of the studies that are being published, all of the data on every drug that’s being tried so that other people can go to it and they can kind of decide for themselves what looks promising and what doesn’t.”
He thinks this will give some direction to finding new drugs that have yet to be used.
“And interestingly, from the state of – we’re finding signals that are Castleman-like, basically. A number of the features that we’re seeing in the COVID-19 data, these same features we see in Castleman disease.”
So in just a few months, Fajgenbaum and his colleagues have already filled a game-changing gap often only capable via a major body like a government or international organization. By using crowdsourcing to gather information from the sources, they’ve already been able to review the wide influx of information being created. He said his goal is not to come up with a drug everyone should take, but rather to steer people towards the drugs proving effective.
