November 2022 – Drew University’s Caspersen School of Graduate Studies hosted a Medical and Health Humanities Symposium, “Creating Cultures of Trust and Equity for People Living with Sickle Cell Disease (SCD).”
Merel Visse, Director of Drew’s Medical & Health Humanities program, welcomed the hybrid audience of students, alums, faculty, and staff—some of whom have personal or familiar experience with SCD. The group emphasized the importance of encouraging dialogue between science and humanities and examined ways to improve trust, respect, and equity of access to trials and treatment for people living with SCD.
Keynote speaker Patrice Matachaba, global head of corporate responsibility at Novartis, spoke about the importance of creating trust and equity in trials and pain treatment. He noted the integral need to incorporate community into the healthcare equation. “Combining healthcare with humanities is precisely the right thing to do,” he said.
Matachaba explained how racial bias and sexism are still deeply embedded in how the U.S. practices medicine and delivers healthcare. “It will take time; health inequity in the U.S. today is a result of centuries of inequity across every walk of life. It is not because they do not trust science. It is because they do not trust the system.”
“If there’s one disease we have failed humanity, it is Sickle Cell,” said Matachaba. “It’s the most common single genetic disease we know.”
SCD causes red blood cells to become c-shaped, blocking vessels and preventing oxygen and blood flow to vital organs. “The number one cause of strokes of children in Sub-Saharan Africa is SCD,” said Matachaba.
“One in 12 African Americans carry the SCD gene.”
Matachaba holds hope for future gene therapy treatments. “With the right treatment, the life expectancy should increase—pain-free,” he said. The Sickle Cell Disease Foundation for Research, founded in 2015, is a resource for SCD patients to receive the care needed during a SCD crisis. “No patient is turned away, they treat patients with dignity.”
Kevin Poirier G’23, Doctor of Medical Humanities (DMH) candidate, responded and concurred with Matachaba’s presentation, reinforcing the issue of trust in medical clinical trials. “I work in chronic pain,” he said. “It’s hard to get people to trust us—they don’t know if they’re going to be helped.”
Karen Proudford, whose father had SCD, is the president of The William E. Proudford Sickle Cell Fund. She spoke about his diagnosis and the progression of the disease. “Pain is the hallmark of SCD and the number one cause of hospitalization,” she said.
“Patients describe the pain as if being hit by a baseball bat, as if glass is running through their veins, and as if nails are being driven into their joints.”
Managing pain during an SCD crisis is critical and often overlooked. “The response from the healthcare industry has been described as being disrespected by emergency departments, doctors, nurses, and health providers,” said Proudford.
To raise awareness of SCD through the arts, Proudford created artSPEAKS, a program that provides a family-centered creative outlet for children and adults with SCD.
For the symposium, The William E. Proudford Sickle Cell Fund generously shared artwork created by children that express the heartbreak of living with SCD, but also the joy of being alive.
The works of art are an opportunity for affected families to build connections, share information, and learn about the complexities of the disease. The colorful artwork is displayed at events, hospitals, and biotech exhibits.
Kadeem Gayle G’18,’23, DMH candidate, poet, and advocate, lives with SCD. He performed his poetic artistic work, conveying his experiences managing the pain and inequities that accompany SCD. Raw and real, sometimes provocative, he expressed the meaning of experimentation and engagement with the humanities, adding an energy of aliveness to the day.
Deborah Padfield, senior lecturer in arts and health humanities and director of Open Spaces at St. George’s, University of London, uses powerful photography as a vehicle to help people with SCD to convey the magnitude of an SCD pain crisis. “Images can be a means of expanding the dialogue,” she said. “Photographs provide a shared space, so we understand exactly what another might mean.”
A common thread throughout the contributions and discussions was the experienced lack of trust and challenging communication between patients, their loved ones, and healthcare providers. Health Communication Consultant Amy Eisenberg G’14,’17 addressed these sensitive issues using interactive assignments. Her tactics may assist people with SCD in their frequent interactions with health professionals.
The symposium was a gracious example of what joint efforts by students, faculty, people living with chronic disease, health care professionals, and societal partners can bring to the field of the Medical and Health Humanities and beyond.
Click here to view the event recording.
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