AFAA Camp

Memories 

2013

 MINNESOTA STATE FAIR

AFAA Co-founder Nona Narvaez and Dr. Eric Edwards, Auvi-Q inventor, work a shift at the AFAA booth at the Minnesota State Fair August 27. (WATCH THE KARE 11 VIDEO)

New portable, talking epinephrine device resulted from patient-centered focus groups

Dr. Eric Edwards, of Richmond, Va. and his twin brother Evan grew up with multiple severe food allergies. As adults, Eric and Evan put their heads together and invented a portable, pocket-sized device that delivers life-saving epinephrine with a retractable needle. In January 2013, the first and only compact epinephrine talking auto-injector - Auvi-Q - was launched.

Minnesotans who visited the AFAA booth at the State Fair Aug. 27 were able to see Dr. Edwards demonstrate his invention in-person. Edwards, a medical doctor, and Evan, an engineer, named the FDA-approved device Auvi-Q due to its audible and visual cues for the user. Fair-goers could use a tester and speak with the inventor directly to learn more about how to obtain a prescription for Auvi-Q from their doctor.

Edwards said patient-centered focus groups told the brothers what they wanted in a device.

"Who decided that a pen was the right way?" Edwards said rhetorically. "We let the patients tell us what they wanted."

Focus group participants said they wanted more of a credit card-shaped design with a retractable needle mechanism and a safety guard.  Then, a large clinical study ensured that the design was the "bio-equivalent" and delivered the same level of drug exposure as a pen, Edwards said.

 "I had to rest my head on a pillow knowing my daughter can use it," said Edwards, the parent of a 7-year-old daughter with severe food allergies.

Did the brothers have to arm wrestle to determine whose voice would give the audible directions on the device?

"We went through these iterations of the voice to figure out what provided that calming, reassuring piece of mind for the patient," Edwards said. "I thought my voice was calming but that didn't test well," he joked.

When they developed the prompt system of audible instructions, they kept in mind that untrained individuals, such as teachers or coaches, may be the ones using the device on a student or athlete who experiences his or her first reaction.

"If you do come in contact with an allergen, solutions such as Auvi-Q are really there to assist you in this really scary reaction and then always you should call 911 and seek emergency attention," Edwards said.

Eric and Evan chose to partner with Sanofi, a major drug manufacturer. "Up to 90 percent of insurance plans may cover the prescription plan costs, according to Lorine Harr, Sanofi's director of Auvi-Q marketing.  Designed for a single use, one prescription includes two Auvi-Q devices and one trainer model. Intended to be injected into the outer thigh, the person using the device can follow the simple audible or printed directions or proceed quicker if they already know how.

"It follows you. You don't have to wait for instructions," Edwards said.

Visiting from Virginia, this was Edwards' first time to the Minnesota State Fair and the AFAA booth.

"We always want to support those who are playing a major role in huge metropolitan areas of advocating and educating the public on what is anaphylaxis; so we're here to emphasize that we want to be a partner and that individuals are educated through Auvi-Q, which is a new option," Edwards said.

In addition to greeting fair-goers at the AFAA booth, Edwards did a television interview on Twin Cities station KSTC 45 and also participated in the flag-raising ceremony with AFAA co-founder Jeff Schaefer at a Minnesota Twins baseball game at Target Field.  The Minnesota Twins support fans with severe food allergies by partnering with AFAA to offer peanut-controlled sections for certain games.

"We wanted to definitely show our support for organizations ... who are willing to go out of their way to help individuals at risk of severe food allergies," Edwards said.

 For an online demonstration or more information, go to Auvi-Q.com

Karina Johnson and her mother Juli Seydell Johnson planned their food ahead of running the Tucson, AZ marathon last December. (Submitted photo)

Late onset of severe food allergies hasn't slowed long distance runners, Juli and Karina Johnson of Eagan

The mother/daughter marathoners get hungry as they stride through 26.2 mile races across the country. Proper planning helps make their trips safe and more enjoyable.

"Like all other areas of our lives, we have to plan ahead and have enough safe and appropriate foods to fuel our runs. When traveling to races we make sure to take enough of our safe go-to foods to cover our energy needs both before and after the race," said Juli, who became severely allergic to soy, legumes and peanuts at age 40.

Juli's symptoms began as a rash and large hives and intensified over a year until she exhibited hives on her face and a swollen tongue. Only after three trips to the emergency room was she referred to an allergist.

Karina, 16, was recently diagnosed with allergies to melon, grapes, bananas and raw carrots after she experienced the sensation of her throat closing, along with pain in her shoulders and upper back. Now they both carry epinephrine and Benedryl with them wherever they go. Unlike others who might outgrow food allergies, they've been told to expect to avoid the foods for the rest of their lives.

"We make nearly all of our food from scratch. At first it was time intensive to do this, however, we've figured it out and adapted ... now it just feels normal to bake all of our own bread," Juli said. When they crave something sweet, homemade chocolate frosting satisfies their sweet tooth.

Juli turned to AFAA's Facebook page and this Food Allergy E-Magazine for help, too.

"I appreciate knowing that there are others who have similar experiences. I like to read about relevant research and I made a call to my State Representative to support the bill allowing stock epi-pens in schools," said Juli.

As parks and recreation director for the City of Eagan, Juli adjusted her habits in social settings and in the workplace. She can print or send a prepared email that explains her allergies.

"I feel this is important so that others aren't offended when I don't eat food offered at a meeting. I can almost never participate in the office birthday treats or donuts so I usually have my own stash of food that I eat in advance or bring along," she said.

One of the most challenging times she has dealt with her food allergies was during the recent death of a family member. Hours spent in hospice proved challenging when seeking out safe foods to eat, exacerbated by stress and sheer exhaustion.

"Luckily a good friend dropped off a bag of 'allergy safe food just for Juli' so that I had food and didn't have to worry about if for a few days. It was a lifesaver," she said.