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What this doctor hopes his own experience with a rare disease can teach us about COVID-19

Pennsylvania doctor David Fajgenbaum believes his years-long search to treat a rare disorder that led him to five near-death experiences could hold clues for approaching COVID-19.

As researchers clamour for a COVID-19 treatment, people need to be careful: doctor

David Fajbenbaum is a doctor and assistant professor at the University of Pennsylvania. Diagnosed with Castleman Disease, Fajbenbaum is researching the off-label use of medications to treat certain illnesses, including COVID-19. (Rebecca McAlpin)

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A Pennsylvania doctor believes his years-long search to treat a rare disorder that led him to five near-death experiences could hold clues for approaching COVID-19.

Dr. David Fajgenbaum was diagnosed with Castleman Disease, which occurs when too many cells grow in your lymph nodes, in 2010. He says the off-label use of a drug meant to prevent organ transplant rejection has put the disease in remission.

Fajgenbaum is the director of Castleman Disease Collaborative Network, a group that is searching for a permanent cure for the rare disease that causes cytokine storms — a hyperactive response by the immune system that can be deadly — which has also been observed in some patients with severe cases of COVID-19.

"Rather than calming down like it's supposed to once the virus is cleared, in COVID-19, patients get this cytokine storm ... where actually it's the immune system that is attacking the vital organs and causing problems," he explained, adding that these "storms" can cause essential organs, including the kidneys, to fail.

For the past three months, Fajgenbaum and his research team have pivoted their work to COVID-19. They are compiling a database of ongoing studies that examine potential off-label treatments for COVID-19.

"It's about the concept of taking drugs that already exist and testing them on COVID-19, and systematically tracking when they are given to COVID-19 patients," he said.

"I'm literally alive today talking to you because of a drug that no one ever thought to try against Castleman Disease and no one ever thought would have worked."

Fajgenbaum urged caution, however. He says that it's unlikely that there will be one treatment that suits every COVID-19 patient. Instead, different treatments will benefit patients depending on the disease's effect on the body.

'The doctors didn't think that I would survive'

Fajgenbaum, who is an assistant professor at the University of Pennsylvania's medical school, was first diagnosed with Castleman Disease in late 2010. The experience is detailed in his memoir, Chasing My Cure.

The disease is rare, affecting an estimated 6,500 to 7,700 Americans each year, according to the Cleveland Clinic.

"Out of nowhere, I became deathly ill. I was admitted to the hospital — the ICU. A retinal haemorrhage made me blind in my left eye, and it took 11 weeks to make the diagnosis," he recalled. 

"They finally made the diagnosis within about one day of having my last rites read to me because the doctors didn't think that I would survive."

A cytokine storm, caused by Castleman Disease, was causing the then third-year med student's illness.

"When you get a cold or the flu and you feel unwell, we often think it's the cold or the flu that makes us feel unwell, but we actually feel unwell because of all of the cytokines that our immune system is producing to fight off that virus," he said.

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A cytokine storm, he explained, causes the body to feel like it's fighting a cold or flu infection — but multiplied by 100 to 1,000 times. 

"Unfortunately, about a year later, I relapsed on the only drug in development for the disease. I was back in ICU," he said.

At that point, he says he promised his family he would find a treatment, and after his fifth hospitalization, he began testing a 30-year-old drug on himself.

"I didn't know that it would work, but I thought there was a chance and I basically had no chance if I didn't get started on this drug."

That was more than six years ago, and the doctor says he hasn't experienced a cytokine storm since.

Risk of 'moving too quickly'

Fajgenbaum believes that there is an opportunity to apply his approach to finding a potential treatment for those with COVID-19.

They're tracking every drug given to every COVID-19 patient and making that database publicly accessible to researchers. 

"We now have over 15,000 patients in this repository, and, amazingly, 150 different drugs have already been tried on COVID-19 patients," he said.

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He also acknowledges that while some treatments, like hydroxychloroquine, initially offered promise, subsequent research proved that they were not effective, and potentially dangerous.

As researchers clamour for a COVID-19 treatment, he says people need to be careful.

"Here you've got uncertainty and fear moving really quickly, which I think is a really tough and potentially dangerous combination, when you're making decisions based off limited data — and you're not just making them every few months, but you're making them every few hours," he said.

"There is a real risk that we're going to move too quickly."

Written by Jason Vermes. Produced by Julie Crysler.

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