One Student’s Death Was a Belated “Wake-Up Call”
It took the death of a student to mobilize action in the Chicago Public Schools to make sure anaphylaxis never happens there again. Schools were allowed to keep extra supplies of epinephrine auto-injectors on hand for use in an emergency, but local TV reporters found that many schools did not. But within two years of Katelyn Carlson’s death, all 700 Chicago Public Schools were given an extra supply of epinephrine auto-injector devices, along with training on how to use them and what to look for when a child suffers an unexpected allergic reaction. This is exactly why we are working to get legislation in New York State passed so that all school personnel will be trained.
For many children, the first time they suffer a severe allergic reaction to a food is when they’re in school. Chicago-area public schools can keep extra supplies of epinephrine auto-injectors on hand for just these types of emergencies, but NBC5 Investigates has discovered that a surprising number do not.
A few days before Christmas in 2010, a teacher at the Edison Regional Gifted Center — a Chicago Public School in the Albany Park neighborhood — threw a holiday party for his seventh-grade class. He ordered Chinese takeout, and, because a couple of his students had food allergies, he called the restaurant several times to make sure they wouldn’t use peanut products in the food.
Despite his calls, one of his students, 13-year-old Katelyn Carlson, ate the food and quickly went into anaphylaxis — a severe allergic reaction. She was immediately rushed to the hospital, but she died later that day.
Katelyn’s life could very likely have been saved, if only the school had had an emergency supply of epinephrine on-hand.
“That was a kind of tipping point, when [Katelyn Carlson] passed away,” said Lilliana DeSantiago Cardenas, who, at the time in 2010, was a program manager with CPS’s Office of Student Health and Wellness.
Cardenas said CPS had already begun to explore the possibility of supplying its schools with extra epinephrine earlier that year, when the Illinois State Board of Education directed all school districts to create food allergy management policies.
But now the issue became more urgent, she said.
“Everybody said, ‘That’s it. We have to be proactive,’” she said.
And they were.
In an institution as large as the Chicago Public Schools system, where even minor changes can take years of committee meetings and administrator approvals, something different happened this time. Within two years of Katelyn Carlson’s death, every single Chicago Public School, totaling more than 700, was given an extra supply of epinephrine auto-injector devices, along with training on how to use them and what to look for when a child suffers an unexpected allergic reaction.
First, Cardenas and her team wrote a food allergy policy, and had it quickly approved by the Chicago Board of Education in early 2011. The policy included training, every two years, for all school personnel.
Then came the issue of getting these large supplies of emergency epinephrine. The auto-injectors can be expensive – hundreds of dollars each. So Cardenas reached out to the Centers for Disease Control and Prevention, where she’d previously received grant funding for another project. She soon got the injectors covered by grant funds, as well.
State requirements, however, say that a school must have a prescription for the extra epinephrine signed by a doctor, which is a major hurdle for some smaller school districts -- but not for CPS.
“We had our own physician in-house,” Cardenas said, “and she signed off, and we immediately started the procurement process for the [injector] pens.”
The winning bidder was Mylan Pharmaceuticals, maker of the EpiPen, which is perhaps the best-known brand of epinephrine auto-injector. It’s also the company that recently came under fire for raising the price of its pens. But that was not an issue for CPS.
“Because we were the largest school district to ever do this project, we asked to work out a deal,” said Cardenas. “That’s when [Mylan] gave us a buy-one-get-one-free deal.”
That deal, Cardenas says, lowered the overall cost for CPS and allowed Mylan to advertise their school program.
The next hurdle was to revamp the CPS medication policy to account for stock epinephrine. That change was passed by the Board of Education in early 2012. The new policy mandated that all school nurses get training, and that’s where Cardenas joined forces with Dr. Ruchi Gupta, a professor with Northwestern Medicine and Lurie Children’s Hospital whose specialty is children’s food allergies.
“We started working together on this and partnered with the Food Allergy Clinic at Lurie,” Cardenas said, “and we worked with them to create training with do’s and don’ts and we recorded everything via webinar.”
By the fall of 2012, she said, every single Chicago Public School had emergency epinephrine on hand and paid for, with staff properly trained on how and when to use it.
“I think it worked because we truly made it a community effort, with parents and organizations and community advocates who could really vet the policy and procedures, to really make it successful,” Cardenas said. “We also worked very closely with community groups, doing presentations and letting them know that this resource existed.
“We hit a lot of little bumps in the road, but this is by far one of my proudest things in my life,” she added. “I was there [at CPS] long enough to see it happen; make it happen; and see the children who benefitted it. We’re saving these kids’ lives.”