We all know that the best treatment for anaphylaxis, a severe life-threatening allergic reaction, is an immediate dose of epinephrine. So, why then do patients not carry it?
Some patients do not have access to epinephrine. Although the drug epinephrine itself is not expensive, the devices used to administer it can be very costly. Sometimes prohibitively so. Many are working to reduce the price families must pay at the pharmacy. The makers of Auvi-Q, for example, are offering their product for free to those with commercial insurance (including those with high deductibles and for whom it is not covered) in an effort to get epinephrine in the hands of patients who need it [read more here]. A generic EpiPen has just been approved by the FDA to be introduced in the coming year.
Teens are a group known for their non-compliance in carrying epinephrine. Teenagers, wired to take risks and extra concerned about fitting in with peers, are often found without epinephrine when they critically need it. In an effort to be like everyone else, they some times purposely leave their auto-injectors when socializing with friends. Adolescents will also mentally minimize the perils of leaving their auto-injectors at home and/or not reading ingredient labels while basking in the potential benefits of acting and operating like their friends and not drawing attention to themselves – a dangerous combination.
An Alarming Study
Dr. Dave Stukus and his colleagues from Nationwide Children’s Hospital conducted a study four years ago of patients and their caregivers being seen by an allergist at their clinic. Among their patients at high risk, only 40% carried auto-injectors even though 60% knew that epinephrine should be carried with them at all times. Nearly 50% of patients carried expired devices and of the 60% diagnosed with asthma (which could make an anaphylactic reaction even more serious) only 38% carried had epinephrine with them at their clinic visit.
But Adults Surely Know Better…
Adults with food allergies fared no better. A survey was conducted earlier this year (March – June 2018) of 597 people representing themselves and their children (a total of 917 patients). While the majority of those questioned filled their prescriptions for epinephrine, almost half (45%) didn’t have their auto-injectors with them at the time of their most severe reaction. Shockingly, 21% didn’t know how to use their epinephrine auto-injectors (EAIs).
In the same 2018 study, fewer than 25% of patients or caregivers routinely carried multiple auto-injectors despite the advice that all patients carry at least two self-administering epinephrine auto-injectors. Carrying two EAIs is critical in case one fails or a second dose is needed before emergency services arrives.
To Sum It Up
According to Dr. Stukus, there are several reasons for not carrying epinephrine:
- complacency if a long time has passed between reactions
- expiration of previous EAIs
- lack of understanding that patients should carry two EAIs at all times
and, I would add
- denial of severity of conditions and the reality of a reaction
First, all patients need access to epinephrine. Financial assistance is available! If you need help affording an auto-injector, please consider savings programs offered by the various pharmaceutical companies. The non-profit Kids with Food Allergies has an excellent article to help make EAIs more affordable, What to Do if You Can’t Afford Epinephrine Auto Injectors.
Second, education about the difficulties and dangers of managing a severe allergic reaction without epinephrine is needed. This begins in the doctor’s office. Physicians should ask about how and how often patients carry their auto-injectors and discuss best practices to make carrying two EAIs a habit. In between visits, patients can learn how to properly use an epinephrine auto-injector and why there’s no need to be afraid of using it.
Smart placement of epinephrine will help you remember to take it with you. It is important to note that you cannot store auto-injectors in your car (temperature fluctuations can affect whether the device will fire properly and how well the medication will work once injected). Instead, consider leaving it on a hook by the door you exit out of, next to your phone or keys, or set a reminder on your phone to alert you 10 minutes before you’re due to leave the house.
There are always many ways to carry epinephrine. A purse makes it easy. But a drawstring cinch bag, gym bag or a backpack will work for men. Some auto-injectors fit right into a pant pocket! There are specialty products that help you carry your auto-injectors in inventive ways, such as running belts, wristlets, arm bands, leg holsters, clip-on bags, etc.
Lastly, make it a habit. You know that feeling when you forget your phone? Or your lunch? With regular practice, remembering your epinephrine will become second nature.
As Dr. Stukus sagely points out, emergencies are never planned. They are not predicted. Epinephrine auto-injectors are meant to be kept in arm’s reach. Carrying your epinephrine is certainly a lot less hassle than going to the emergency room for the night.