“According to a new 2012 Leger Marketing survey commissioned by Sanofi Canada , an alarming number of Canadians at risk of anaphylaxis do NOT always carry or have immediate access to an epinephrine auto-injector. And many are uncertain about how to correctly use the device.”
This was online survey of over a 1000 people. Approximately half of the respondents were adults at risk for anaphylaxis. The other half were parents of children at risk for an allergic reaction. Those surveyed had allergies to food, insect bites and/or latex. The results are staggering. Although this was a Canadian survey, I believe we would find similar results in the United States. For example, last summer Pediatrics published research that found an alarming number of people failed to use the epinephrine for a serious allergic reaction (only 29.9% used the epinephrine when warranted).
Here are a few of the findings that were highlighted in the press release late yesterday (You can review the full survey HERE.):
- 57% overall do NOT always carry an epinephrine auto-injector as recommended by physicians
- 63% of adult patients and 51% of parents with children at risk do NOT have an auto-injector immediately available at all times
- 27% feel they would likely panic in the event they or their child had an anaphylactic reaction
- 16% overall (19% of adults and 14% of parents) say they are not confident in their ability to correctly use the auto-injector
- 56% overall (47% of adult patients and 64% of parents with children at risk) worry that others will not know how to use an auto-injector in an emergency
- More than 40% of patients and parents say people around them/their children are likely to panic in this situation
This lack of education and training is not okay! Last month I wrote a blog about how shocked I was to find that many parents at a FAAN Walk in our area did not have their child’s epinephrine with them. These parents were “walking for a cure” without carrying the only medication we currently have that could possibly save their child’s life. There is a huge breakdown here.
This survey identifies three critical issues in the food allergy community that we absolutely must address.
- Patients NOT having their epinephrine immediately available AT ALL TIMES
- Adequate training of how and when to use an epinephrine auto-injector (for patients and for parents of patients)
- Adequate training of caregivers and friends of the allergic person
This is a call to action to all of us in the food allergy world. There is a widespread need for education. We, in the food allergy community, need to implement specific strategic goals to address these issues.
This is what I think we need:
- Allergist need to spend more time training their patients. Allergists are our first trainers. This survey shows that perhaps allergists are not taking enough time with their patients to ensure that they are adequately trained and completely comfortable with using the epinephrine auto-injector. Allergists are also the first educators. There cannot be enough stress on the fact that epinephrine must be with the patient at all times.
- National Walks and food allergy events need to constantly stress the importance of carrying the epinephrine. I would like to see large, appealing, interactive educational booths set up at all of these events where parents and patients can review signs and symptoms of anaphylaxis and be trained how to use epinephrine. In addition to raising necessary funds, this should be one of the primary objectives of each and every allergy event both local and national.
- We need National PSAs regarding the need to carry epinephrine at all times.
- The whole food allergy community needs to have a consistent message. There needs to be greater collaboration within the food allergy community. The national organizations should be connected to the local groups which should be connected to the allergists, and the local community and so on…so that the message gets to the people that need it the most.
- Caregivers, school personnel and community members must be willing to learn the facts about food allergies, and when and how to use epinephrine. In addition to local educators and trainers, there are also great, easy-to-use resources online like AllergyHome and AllergyReady. I’d like to see all of these resources used.
- More people need to share their personal stories. Anaphylaxis is real. It is life-threatening. ( I appreciate the work of Brian Hom, Sara Shannon and more recently, Julie Bowen. We need more voices.)
- Lastly, we need widespread education targeted to the general public about the use of epinephrine. We have AEDs in all public areas, most everyone knows how to do the Heimlich maneuver, why not the use of epinephrine? We live in a day and age where there are very few people who do not have a relative, friend, or classmate with a life-threatening allergy. Perhaps we all need to become comfortable with using a device that could buy the patient the time he/she needs in order for EMS to arrive.
Lives are at stake here, plain and simple. We will see more unnecessary deaths if we do not take these issues seriously. Please feel free to comment. What can we do to help get the necessary education to the people that need it most?
Gina Mennett Lee, M.Ed.
President and Founder, Food Allergy Education Network