By Brinda Patel
Staff Writer
Joseph Coates, a man suffering from POEMS syndrome, found himself paralyzed from his arms to his legs after continuous, ineffective medical treatments in 2024.
POEMS syndrome is a rare blood disorder and stands for the following symptoms: polyneuropathy, organomegaly, endocrinology/edema, monoclonal-protein and skin changes, according to the Mayo Clinic. This disorder can progress rapidly without treatment and become life-threatening if not caught early. Radiation therapy, chemotherapy and stem cell transplants are some vital treatment options for this disorder.
After Dr. David Fajgenbaum, immunologist and current associate professor at the Perelman School of Medicine at the University of Pennsylvania, suggested that Coates try a unique combination of immunotherapy, chemotherapy and steroids, the treatment started working well within a week. After four months, Coates was in good enough condition for a stem cell transplant. Today, over a year later, he’s in remission.
Fajgenbaum’s suggested regimen was not devised by him, but rather an artificial intelligence model, ARPA-H. He led his team at the University of Pennsylvania’s Center of Cytokine Storm Treatment and Laboratory to develop the technology that can repurpose certain drugs that can be used to treat rare and aggressive cancers, fatal inflammatory disorders and neurological conditions.
Doctors would need to drain liters of fluid from Coates’ abdomen every few days, according to The New York Times. At one point, he could barely stay conscious and became too sick for a stem cell transplant. He was ready to give up until his girlfriend, Tara Theobald, emailed Fajgenbaum. The couple met him during a passing encounter at a rare disease summit in 2023.
Fajgenbaum was 25 years old the first time he repurposed a drug. In medical school, he was diagnosed with Castleman disease, a rare disorder that deteriorated his immune system, leading him to the intensive care unit.
According to the Castleman Disease Collaborative Network, a patient is considered cured of this disease if their lymph nodes are removed completely.
According to the New York Times, Fajgenbaum did not respond to any other available treatments for this disease. Consequently, he began to run tests on his own blood and tried unconventional treatments.
He saved his own life by utilizing a sirolimus, a generic medication usually given to kidney donation recipients to combat organ rejection. He has been in remission from Castleman disease for more than a decade.
Following a career built at the University of Pennsylvania, Fajgenbaum started to research other drugs with unknown uses that could be used as viable alternatives for other serious medical diagnoses.
At first, Fajgenbaum’s approach was “one drug and one disease at a time,” but he longed to speed up the process. In 2022, he established Every Cure, a nonprofit organization that would utilize machine learning to compare thousands of drugs and diseases simultaneously. The AI platform is funded by the Advanced Research Projects Agency for Health, with an investment of $48.3 million in a three-year contract as of Feb. 28, 2024.
On Oct. 9, 2024, Every Cure reported a five-year commitment of $60 million from TED’s Audacious Project. This financial support will help Every Cure transform the medical landscape worldwide and overall quality of life for many suffering with various health challenges.
