Madeline Johnson and her brother, Sterling.
Brian and Wendy Johnson, Madeline’s father and mother.
The memory is vivid.
Wendy Johnson, a mother of two, and her family were on their way home from a Thanksgiving celebration with her in-laws when her then seven-year-old daughter, Madeline, became sick in the car.
Wendy and her husband initially assumed it was just a stomach bug but, as her fever and vomiting persisted over the next week, they grew concerned. Then, on the morning of December 2, 2010, upon opening Madeline’s bedroom door to check on her, Wendy was struck by a sticky, sweet smell (which can be an indicator of diabetic ketoacidosis, a serious diabetes complication that can result in fruity-smelling breath1). This prompted a visit to the doctor’s office, where Madeline’s blood sugar was tested – 222mg/dl (a normal fasting blood sugar level is below 100mg/dl).
“Go home, speak with your husband and pack a bag,” the doctor instructed. “The children’s emergency room is waiting for you.”
Madeline Johnson had been diagnosed with type 1 diabetes (T1D).
“I was shell-shocked,” said Wendy. “I did my best to hold it together for Madeline, and to take in all of this alarmingly new information they were throwing at me.”
As a parent, you work hard to stay calm in the face of crisis and be a source of strength for your loved ones. But beneath this calm exterior, Wendy was distraught that day, as she knew a T1D diagnosis meant a lifelong burden for her daughter; maintaining her composure under such devastating circumstances would only last so long.
“When I returned to work after missing several days, I stepped into my office, sat at my desk, and sobbed for nearly an hour,” she said.
In no time at all, Wendy and her husband, Brian, were quickly consumed by an entirely new world of parenting and child care: finding an endocrinologist, understanding their related health insurance benefits, developing a plan for diet and exercise, learning how to administer and manage insulin injections and finger pricks for glucose monitoring – all while trying to reassure Madeline and their then four-year-old son, Sterling, that they would go on living a normal life, with T1D now just a part of it, not the main focus. Life – for all of them – had been turned upside down and they were all learning an entirely new “language” – one of lows and highs, ketones, dosages and careful calculations.
As time went on, the unpredictable reality of life with T1D would become the Johnson family’s new norm – they carefully developed their “process,” as Wendy puts it. Together they track Madeline’s glucose levels with her wearable continuous glucose monitoring (CGM) system, which automatically feeds readings to Wendy’s smartphone. Wendy sends Madeline text reminders to either bolus her insulin to offset spikes in blood sugar or eat snacks on hand to fuel Madeline’s physically active schedule so she doesn’t go “low.”
Despite the important advancements that have been made in treatment, and technologies that allow parents, like Wendy and Brian, to track their child’s blood-glucose levels, the Janssen DIA wants to do better for individuals and families at risk for T1D.
“Every day, I tell Madeline to just rock the process…and she does,” Wendy says. Never in a million years, though, did Wendy anticipate the startling turn her family’s process would take.
While attending a JDRF research conference in Washington, D.C., Wendy elected to have Sterling – then five years old – tested for islet autoantibodies – an early indicator for T1D. After he was tested, Wendy would later receive a call from the Children’s National Medical Center in Washington, D.C.; the results were positive for five of the five markers. While Sterling was still considered “healthy,” they told her, he was susceptible to developing T1D down the road (having just two of the markers carries a five-year and 10-year risk of symptomatic disease of 44 percent and 70 percent, respectively, and the lifetime risk nears 100 percent2), and there is no available or proven intervention to preempt or stop his progression.
The Janssen Disease Interception Accelerator (DIA) hopes to change that scenario. The DIA is focused on fully understanding susceptibility to T1D, screening and identifying at-risk individuals early on and developing solutions to stop, reverse or inhibit the disease process before symptoms manifest. The DIA met Wendy at a recent meeting with the U.S. Food and Drug Administration (FDA), where, as a representative of the JDRF, she shared her family’s poignant and all-too-common story. Her family’s experience served to spark an important conversation with the FDA about the regulatory path forward for interception solutions in the future. Equally impactful, the Johnson family’s story illustrates the need for and inspires the disease interception work that the DIA group and colleagues across Janssen are passionately pursuing.
Despite the important advancements that have been made in treatment, and technologies that allow parents, like Wendy and Brian, to track their child’s blood-glucose levels, the Janssen DIA wants to do better for individuals and families at risk for T1D. That is the vision of the DIA, and we believe that disease interception can get us there.
“I would like to extend a sincere ‘thank you’ to the brilliant minds behind the Disease Interception Accelerator,” said Wendy. “It’s a worthwhile concept to pursue and would be truly life-changing. We have one child who doesn’t have a choice at this point, but another child who could have a choice if a solution were to exist.”
1Medline Plus. Diabetic ketoacidosis. https://medlineplus.gov/ency/article/000320.htm.
Accessed: December 9, 2016
2Diabetes Care. 2015 Oct;38(10):1964-1974. DOI: 10.2337/dc15-1419