Symptomatic: A Medical Mystery Podcast – Episode Summary: Case #18: Every Cure Pt.2 (Gary)
Release Date: July 30, 2024
Host: Lauren Bright Pacheco
Produced by iHeartPodcasts
Introduction
In Episode #18 of Symptomatic: A Medical Mystery Podcast, host Lauren Bright Pacheco delves deeper into the harrowing journey of Gary Gravina, a former Marine and carpenter, battling the rare and often misunderstood Castleman disease. This episode not only chronicles Gary’s fight for survival but also highlights the innovative efforts led by Dr. David Feigenbaum to repurpose existing drugs, offering hope to those afflicted by rare diseases.
Gary’s Background and Family Tragedy
Gary Gravina built a fulfilling life, transitioning from his service in the Marines to over 27 years as a carpenter. His life, characterized by craftsmanship and dedication to family, took a devastating turn when his stepson, Jacob, was diagnosed with brain cancer.
Gary Gravina [03:39]: “Seven, eight. Yeah. About nine months after we all moved in together, my stepson Jacob presented with a seizure and had a diagnostic journey. The end result was that he had brain cancer.”
Jacob’s battle concluded prematurely, leaving Gary and his wife, Stacy, grappling not only with loss but also laying the emotional groundwork for Gary’s subsequent health crisis.
The Onset of Illness and Hospitalization
Shortly after Jacob’s passing, Gary began experiencing severe symptoms that he initially dismissed as a persistent flu. However, unlike previous bouts of illness, these symptoms were unrelenting and progressively debilitating.
Gary Gravina [05:03]: “I felt like I had a flu, but I could not push through it. I could not get up and go to work.”
Despite his resilience, Gary’s condition deteriorated rapidly, leading to a hospital visit where doctors swiftly recognized the severity of his state.
Lauren Bright Pacheco [06:01]: “At what point did they realize they were dealing with something far more serious than the flu?”
Gary’s battle culminated in a medically induced coma, underscoring the dire nature of Castleman disease.
Connection with Dr. David Feigenbaum
Unbeknownst to Gary, Dr. David Feigenbaum, a former medical student who survived Castleman disease himself, was concurrently pioneering research to find new treatments for the ailment. Dr. Feigenbaum had established the Castleman Disease Collaborative Network (CDCN) to repurpose existing FDA-approved drugs for treating rare diseases like Castleman.
David Feigenbaum [07:32]: “We have 3,000 FDA approved drugs, and 95% of rare diseases have no medical approved treatment. Of those, over 80% are generic and not being studied for new uses.”
Gary’s plight intersected with Dr. Feigenbaum’s mission when a published study by David caught the attention of specialists at the University of Pennsylvania, leading to a critical intervention in Gary’s treatment.
The CDCN and the Birth of Every Cure
Dr. Feigenbaum and his colleague, Grant, overcame significant skepticism from the medical community to launch the CDCN. Their goal was audacious yet simple: to unlock the potential of existing drugs to treat rare diseases.
Grant [08:56]: “We called everyone we knew, all the researchers in the world that might know anything about this disease… we were young and naive enough to have the audacity to think that we could do anything.”
This perseverance laid the foundation for the nonprofit initiative Every Cure, aimed at scaling the research efforts to find life-saving treatments through AI-driven data aggregation and drug repurposing.
Gary’s Intensive Treatment and Remission
Under the guidance of Dr. Feigenbaum and the CDCN, Gary underwent an aggressive treatment regimen. Initial attempts with a drug developed for lymphoma showed promise but were not sustained, leading to further experimentation with other medications.
Lauren Bright Pacheco [17:37]: “It was clear to everyone that Gary's time was running out. His body was too weak to push through continued chemotherapy.”
Despite the bleak prognosis, the collaborative efforts of the CDCN culminated in a treatment plan that successfully induced long-term remission in Gary.
Gary Gravina [23:50]: “But I made it through that night.”
This victory was not just personal but also a testament to the potential of repurposed drugs in treating rare diseases.
Evolution of Every Cure with Artificial Intelligence
Recognizing the limitations of manual data analysis, Dr. Feigenbaum and Grant leveraged advancements in artificial intelligence to enhance their research capabilities. This technological integration allowed Every Cure to analyze vast biomedical data more efficiently, identifying potential drug-disease matches at an unprecedented scale.
Grant [32:14]: “This technology could be utilized… to look across all diseases and all drugs and find the interconnectivity between them to figure out which drugs should work for which diseases.”
The incorporation of AI has significantly accelerated the identification of promising treatment options, expanding the reach and impact of Every Cure.
Messages from Gary and Dr. Feigenbaum
Gary Gravina emphasizes the importance of community and support in battling illness.
Gary Gravina [36:11]: “I try and act as an ambassador to other people who are facing Castleman disease and just let them know that they're not alone.”
Dr. Feigenbaum shares a profound message of hope and action.
David Feigenbaum [37:42]: “No matter how tough things get… realize that there may be a path out of this. And that means you need to take action in ways that make sense for you.”
Both narratives underscore resilience, collaboration, and the relentless pursuit of solutions in the face of medical adversity.
Conclusion
Case #18: Every Cure Pt.2 (Gary) is a compelling exploration of personal struggle intertwined with groundbreaking medical research. Gary Gravina’s story is not just one of survival but also of advocacy and the transformative power of repurposed medicine. Through the unwavering dedication of individuals like Dr. David Feigenbaum and the innovative use of AI in research, Symptomatic: A Medical Mystery Podcast sheds light on the relentless fight against rare diseases, offering hope to countless others navigating similar medical mysteries.
For more information on the initiatives discussed in this episode, visit Every Cure.
Notable Quotes:
- Gary Gravina [05:03]: “I felt like I had a flu, but I could not push through it.”
- David Feigenbaum [07:32]: “Over 80% of FDA approved drugs are generic and not being studied for new uses.”
- Grant [08:56]: “We were young and naive enough to have the audacity to think that we could do anything.”
- Gary Gravina [23:50]: “But I made it through that night.”
- David Feigenbaum [37:42]: “No matter how tough things get… realize that there may be a path out of this.”