Identical twins Eric and Evan Edwards both have severe food allergies and they have been developing a new type of epinephrine delivery system they call an EpiCard. They started their privately-held company, Intelliject, straight out of college with funding from the National Collegiate Inventors and Innovators Alliance, institutional investors, friends and family and "angel" investors.
I had a chance to interview them via email about their allergies and their company.
Health Central: Is the Edwards family an allergic one?
Intelliject's Edwards Twins: No -- we are the only ones in our family with life-threatening allergies.
HC: That must have been a challenge for your parents. How old were you when diagnosed? What episode led to the diagnosis?
IE: We were colicky infants and frequently visited the Emergency Room with episodes of hives, vomiting and difficulty breathing. A neighbor insisted that our parents should take us to an allergist due to these episodes. Once we went to an allergist, our parents were told of the severity of our allergies: specifically anaphylactic to all tree-nuts, peanuts, seafood, eggs, most antibiotics and bee venom. This diagnosis was made before we could walk. Our mother was told by our allergist that we were the most allergic children he had ever treated.
HC: So you both have the same allergies? Do you know if this is typical of identical twins?
IE: Since identical twins come from the same fertilized egg, one might assume that identical twins would have identical allergies. However, we've learned that the tendency to develop allergies is only partly genetically based. This is a complex issue and experts have come to realize that there are several other factors that can lead to this tendency, including environmental influences. For us, we've found that we were mostly allergic to the same foods but at different levels of severity.
HC: Evan, you talk about a close call on the Intelliject website. Just wondering: where was your emergency epinephrine auto injector when that occurred?
IE: The most recent severe food allergy reaction was a couple of years ago in a Tapas Bar in Northern Virginia. I had left my epinephrine injector in my car at home; we had taken our friends' car to the restaurant and I had forgotten to grab the EpiPen. Fortunately, the local hospital was just minutes away.
HC: That is very fortunate Eric, your child has allergies. What are your concerns as an allergic parent for an allergic child?
IE: As you would probably guess, I have a much greater appreciation for what my parents went through while I was growing up with severe food allergies. It is very different being a parent versus a patient. As an adult patient, I feel like I have greater control over managing my risk for a severe allergic reaction. However, as a parent, I worry much more about my daughter having a severe reaction. This is because I have limited control in ensuring that those who come in contact with my daughter (e.g. school teachers, nurses, etc.) know exactly what to look for with a reaction, how to respond, and how to use the EpiPen correctly. You can educate and reinforce others, but you never really know how they will respond during a true emergency until one occurs.
My wife, Autum and I have had to make adjustments at home to ensure that all foods that are potential triggers are out-of-reach from our two year-old daughter, Avryn. We have been proactive as parents to make every attempt to ensure that Avryn is in a safe environment at home, school, and at friends' houses.
Autum has handled the entire situation having two allergic individuals at home very well. This is something she never had to deal with prior to meeting me and I am blessed to have someone who is very patient and understanding by my side as we confront this affliction together.
HC: What are the life lessons you'd both like to share with parents of allergic children?
IE: Living with allergies is difficult, but can be managed better today than ever before due to the increased awareness of severe food allergies among the greater population and the significant resources that are available. For example, many restaurants now understand severe food allergens and their potential to cause anaphylaxis and assist by preparing customized food-allergic menus. We believe that education and awareness are keys to empowering parents and relieving anxiety. Understanding anaphylaxis at all levels, including diagnostic criteria, treatments, research being conducted, advocacy, etc. is important to staying on top of this condition. There are community-based organizations such as FAAN and companies such as Intelliject that will continue to increase awareness and provide solutions for parents to help manage their children's allergies.
HC: Do you think the general public understands the severity of food allergies?
IE: No, not everyone does - but the understanding is getting much better - there is still a lot of work to do. For example, when Eric and I were in grade school, we were the "weird kids" with severe food allergies sitting by ourselves at the cafeteria table because we were concerned about being exposed to allergens in other kid's lunches. Today, severely allergic children have a better understanding of how to manage the lunchroom fear and this situation is much more commonplace in the school systems. In addition, many states have even enacted allergic emergency action plans/programs and allow children to carry their own epinephrine auto-injectors with them at all times.
HC: How are your food allergy challenges different now compared to childhood?
IE: We have outgrown most of our food allergies with the exception of tree nuts, peanuts and shellfish. At the age of 25, we decided to visit our allergist for a check-up for our most severe allergies. After receiving skin, RAST, and ImmunoCAP testing, we discovered, to our surprise, that we were no longer allergic to eggs. We also discovered (hours after a successful food challenge) Krispy Kreme doughnuts and Ben and Jerry's ice cream.
HC: When did you come up with EpiCard's unique delivery system idea?
IE: The EpiCard was conceptualized when we were on our way to Europe for a family vacation in 1998. We could not remember whether or not we had our epinephrine injector packed as we headed to the airport, which led to an anxiety-ridden discussion amongst our family. During this discussion, our older brother mentioned that we should invent a smaller device that is more portable. It was during these weeks abroad that we began to wonder how many others struggled to keep the device with them at all times.
This was right before heading into college and it afforded us the opportunity to shape our education around this invention and building the company. Evan worked towards a masters in Engineering and Eric took the medicine/ pharmacy professional route.
HC: How did you come up with the EpiCard specifically?
IE: As patients, we noticed shortcomings with the current leading epinephrine auto-injector. These concerns were validated with other parents and patients. When we completed our early primary market research, the three areas of concerns that were constantly mentioned included concerns around the Size, Safety, and Ease of Use of the currently marketed products.
HC: How is this product an improvement upon the current epinephrine injectors?
Size - The current devices are marker-sized and bulky. Studies have shown up to approximately 70% of those prescribed epinephrine auto-injectors do not carry it with them at all times
Safety - The currently marketed injectors have a needle that sticks out post-injection. This presents a sharps hazard and risk of a needle-stick injury.
Ease of Use - Current epinephrine delivery systems were not designed for the end user and use-related hazards occur often. For instance, using the pen metaphor- the safety cap is covering a hole and when you remove it, you would think that it's protecting the needle "business" end. This is not the case, so users sometimes remove this cap, flip the device over to inject, and end up injecting their finger or thumb instead. In addition, the device incorporates our "prompt" platform that provides audible and visual guidance to a patient to assist them or a care provider with the administration of the epinephrine.
HC: What are your short-term goals and long-term goals for this product?
IE: Short term- we aim to get the product FDA approved and into the hands of patients in order to save lives.
Long term- we plan on continuing to incorporate feedback from parents, patients, physicians, and other stakeholders as mentioned above to provide solutions to at-risk, severely allergic patients and patients suffering from other chronic and acute diseases.
HC: What is your advice to parents of allergic children, or to family members of allergic loved ones about emergency medicine delivery systems?
IE: Practice using the trainer devices often; make sure others around your loved ones practice as well. There are resources available to assist with being prepared for an allergic emergency. Visit www.fightsevereallergy.com for one such resource.
Thank you Eric and Evan!