Last year Paul and Wanpen Anderson of Champaign, Illinois, were preparing to celebrate the Christmas holidays with their two children when their 22-year-old daughter, Angela, developed a rare adverse drug reaction called SJS/TEN.
“It started with an eye infection on Christmas Eve,” Paul Anderson wrote in an online account of his daughter’s illness. The severe, immune-mediated reaction swept through her body like wildfire, blistering her skin and internal mucous membranes. She died four days later, on Dec. 28, 2015.
In Angela’s memory, the Andersons decided to support research to find a cure for Stevens-Johnson Syndrome/toxic epidermal necrolysis (SJS/TENS). That’s how they found Elizabeth Phillips, M.D., an international expert on adverse drug reactions at Vanderbilt University Medical Center (VUMC).
Thanks to the generous donations of family members, friends and concerned strangers, and with the help of their son, Tim, the Andersons were able to present Phillips with a check on Dec. 13 for $22,000 to support her SJS/TEN research — $1,000 for each of Angela’s 22 years.
A research fund has been set up in Angela’s name at http://vanderbilthealth.com/sjsresearchfund to receive additional donations. “We want to keep this from happening to another person,” Paul Anderson said.
Serious adverse drug reactions (ADRs) are often cited as the fourth-leading cause of death among hospitalized patients after heart disease, stroke and cancer. Treating and helping patients recover from these reactions costs an estimated $136 billion every year.
SJS/TEN is an extreme form of ADR. It often begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters off the top layer of skin. Among elderly people, SJS/TEN has a 50 percent mortality rate.
In most cases, including Angela’s, doctors are unable to confirm with certainty which drug triggered the devastating hypersensitivity reaction, said Phillips, the John A. Oates Professor of Clinical Research at Vanderbilt University School of Medicine.
But careful screening using sophisticated genetic and cellular techniques can help some SJS/TEN survivors avoid another catastrophic event and determine which drugs they can safely take in the future, she said.
Phillips and her colleagues are developing strategies to find true cases of SJS/TEN within VUMC’s BioVU, a unique resource that pairs a de-identified electronic health record with a DNA biobank. These search tools can then be applied to other electronic health records.
Phillips said the research represents an international milestone in the identification of possible genetic risk factors for SJS/TEN.
Complementary studies in her lab aimed at identifying tissue-specific cellular and molecular “signatures” of SJS/TEN will provide further clues to patient risk and could lead to preventive strategies, she added.
Both projects are supported by the National Institutes of Health. Private donations are also important, she said, because they help “raise recognition that this is a potentially solvable problem.”
Paul Anderson, a retired postal worker, and Wanpen, a retired accountant at the University of Illinois, said they spent four months searching the internet and calling research programs around the world before they found Phillips. That kind of persistence, Phillips said, is truly inspiring.
“Serious adverse drug reactions affect diverse groups of patients from all walks of life,” Phillips said. “Yet they are not ‘owned’ by any cohesive medical discipline or patient support group.”
The Andersons’ efforts help give patients a voice, and ultimately will help improve drug safety globally, she said.
