FeaturesDec/Jan 2014 Issue

All About Epinephrine: A Life-Saver for Celiac School Kids

Challenges Ahead

Meanwhile, a number of states still have no laws for stocking emergency epinephrine in their schools. Advocates in North Carolina are trying to change that in their state.

Benita Powell of Fayetteville, North Carolina, worked with Parents of Allergic Kids (PAK), a support group in Charlotte, to advocate for stock epinephrine. Their efforts included e-mailing lawmakers and creating a change.org petition.

Powell understands the fear of having a food-allergic child at school without access to epinephrine. The school district would not allow her 9-year-old daughter, who is allergic to peanuts and some tree nuts, to have an auto-injector at school because of a misstep in paperwork. After a day spent worrying and the school’s refusal to accept the medication until it received the proper paperwork, Powell left the auto-injector on the front desk with a note saying she wouldn’t sue if staff had to use it on her daughter. The EpiPen stayed, but not without a frantic response from the school clerk and much negotiation on Powell’s part.

“If we had this emergency epinephrine law, it would have saved me some peace of mind,” Powell says.

Kendra Montgomery-Blinn of Durham, North Carolina, partnered with a local physician and North Carolina Representative Rick Glazier to create a bill that would mandate stock epinephrine in North Carolina’s schools. Glazier, a Democrat, assembled a team of Republicans to co-sponsor the bill in the Republican-controlled state House. They were adamant that the bill be a mandate, not voluntary.

Given budget cuts and other concerns, voluntary legislation wouldn’t provide the needed coverage, says Montgomery-Blinn, who has a school-age son with food allergies. “Anything that doesn’t have to be dealt with immediately goes to the bottom of the list of the million things schools have to do.”

In addition to creating a mandate, Glazier adds, it was important that the statute cover activities both inside school and on the grounds, such as at football games, and that it have a training requirement.

While the bill passed the state House unanimously, the North Carolina Senate didn’t consider it during the last session. Glazier reports that several state senators told him they were trying to cut back on regulations and that there was no data about anyone dying from anaphylaxis in a North Carolina school.

“Surely, those two rationales can be overcome,” Glazier says. “My only hope is that no child dies in the meantime.”

Glazier encourages all parents, friends and groups to present cogent letters, calls and e-mails to the key legislators involved in epinephrine bills in their given state and at the national level.

Advocates should explain:

■ Why the law is important.

■ How it has assisted in other states.

■ What medical organizations say about the life-saving use of epinephrine.

■ What groups support the legislation.

■ Real-life cases for those lawmakers who don’t have a personal connection with someone with food allergies.

“I always think personal stories are best,” Glazier says. “You don’t want to make a law based strictly on anecdotal stories but when you’ve got a critical mass of stories all saying the same thing, then it becomes important.”

Collaboration with people throughout the state of Nevada helped Moassessi send a message to lawmakers. Communicating clearly with constituents was key. She sent an e-mail to her contact list, notifying them that a hearing was coming up, providing contact information of lawmakers and detailing what talking points to include. When the hearings were over, she sent another e-mail, reminding people to send thank-you notes.

It’s important to be gracious and respectful, even if people disagree, she says. “The thank-you’s really made a difference. We started to get a reputation for being polite.”

As the work continues on state and federal levels, Moassessi and other food-allergy advocates stress that parents truly have the power to make the world safer for their children.

“You don’t have to wait for somebody in elected office to come up with the idea,” says Montgomery-Blinn. “As a citizen, you can do this. You can push for this. You can say, ‘I want to see this happen’—and then make it happen.”

Wendy Mondello (tasteofallergyfreeliving.blogspot.com) lives in North Carolina.

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