campus connection
A Rare Event The University of Minnesota’s Center for Orphan Drug Research wants to illuminate the struggles facing patients with rare diseases. Their unconventional approach? A stage production. By Joseph A. Cantlupe Rare diseases are formidable, presenting challenging and complex uncertainties that would make for dramatic stories in the hands of great playwrights like Shakespeare or Sophocles. The Center for Orphan Drug Research (CODR) at the University of Minnesota (UMN) College of Pharmacy is tapping into that premise in a big way. It is teaming up with the Theatre Arts and Dance Department to relate the story of orphan drugs and rare diseases, conveying the pain of disease and relief brought by care and community. Since its inception in 2005, CODR has been one of the most prominent institutes in the nation in its field, helping to develop orphan medications and leading the way in instruction about rare diseases. In collaboration with rare disease community members, CODR is producing a play examining the challenges of living with rare disorders. The university’s scientists, theatre arts professors and a Minnesota playwright and storyteller, Kevin Kling, have worked together to put on the production.
Essentially, a part of the play is adapted from Sophocles’ tragedy “Philoctetes.” Philoctetes was a soldier in the Trojan War who was bitten by a snake, which resulted in an incurable wound on his foot. He was left abandoned and isolated on a small remote island for 10 years. The thrust of the play centers not only on pain but the anguish linked to solitude and abandonment. The UMN team thought the play was a perfect way for audiences to gain a greater awareness and deeper understanding of the medical, economic, psychological and social challenges facing people with rare diseases. The play was developed through a deep collaboration at UMN involving scientists and artists, students as well as discussions with patients with rare diseases and their families. “We felt energy in this ancient story of painful isolation on an island that serves as a metaphor for rare diseases, particularly the themes of abandonment and struggle,” said Dr. Sonja Kuftinec, play dramaturg and a professor in the university’s Department of Theatre Arts & Dance. “The play offered a vehicle to engage rare disease through Philoctetes’ journey, finding connection and common purpose that could enable healing if not cure.” While the play incorporates elements of the Greek tragedy, it highlights other aspects of rare diseases, emphasizing the importance of orphan drugs as well as medical care, education and the experiences of physicians, caregivers, patients and their families. Dr. Paul Ranelli, a retired professor in the College’s Department of Pharmacy Practice and Pharmaceutical Sciences, came up with the idea of bringing together pharmacy and arts and science schools with a specific interest “in the intersection of human actions and social sciences.” He thought about the role of pharmacy, the need for medications and the impact on patients and their families. “A lot happens when a person leaves the pharmacy and takes that bottle of pills with them,” he said. “There is stress inside
Academic Pharmacy NOW 2022 Issue 4
5