By Elizabeth Muller
An article published in the Orlando Sun-Sentinel late last year by Dr. Adriane Fugh-Berman of Georgetown University*, blamed the rising cost of EpiPens on “the sale of fear.” Most commentary took the author to task for claiming that over-diagnosis of food allergies and zealous advocacy funded by Mylan had created a climate in which the company could raise the price of EpiPens with impunity.
One item in the critique, however, has mostly been ignored. That is the suggestion that families can fight the power by filling syringes with epinephrine and injecting themselves.
“Two vials of epinephrine, packaged with a syringe, costs less than a movie ticket. It’s easy to teach someone to draw up a drug with a syringe; children with diabetes do it all the time. Or a prefilled syringe lasts three months – no refrigeration needed.”**
Forget children for a moment–an adult patient who is having trouble breathing, who may be starting to panic, and who needs epinephrine immediately before her or she blacks out, is not in a good position to calmly measure out the precise amount of epinephrine needed, nor to inject themselves with it. Carrying preloaded syringes with non-retractable needles would only be fractionally better. This is very different from teaching a child to inject himself with insulin at the same time every day. Practice makes perfect.
Faced with one’s own child kicking his legs, choking and collapsing parents may be only slightly more calm than the patient. The real value of the EpiPen is that it makes injection at moments of stress reasonably simple and sure.
Some adults would be able to give the injections. Certainly, RNs, physicians, and off-duty EMTs if there happened to be one around. I think I could do it given a bit of training, but I have more experience than many parents with both injections and precise measurements that could mean the difference between life and death. I have used syringes to give myself injections, used epinephrine auto injectors on my kids more than many people (5 times in the past few years), made mathematical calculations regarding oral immunotherapy dose conversions with my kids lives at stake, and worked (although only very briefly) in laboratories where precise measurements were essential. Even so, I’m not sure I would want to use a syringe to inject my own child in a time of high stress, just to save money.
Most people with food allergies go years, even decades, without needing to use epinephrine. This means that very few of us get used to administering it. Most food allergy parents I know use antihistamines for the vast majority of allergic reactions. Some have never used epinephrine. Many of us have a drawer full of expired EpiPens and old Auvi-Qs. Does that mean, by Fugh-Berman’s logic, that we allowed ourselves to be frightened by Mylan into buying a medicine we don’t need? It only takes once.
An even more important reason to keep epinephrine injection simple and easy is that many people we are trusting to use epinephrine have even less experience with it than we do. Teachers, camp counselors, coaches, and friends’ parents all need to be prepared to use epinephrine. Asking someone you barely know to be prepared to administer a life-saving drug is hard enough – providing it in a simple and easy-to-use form is critical. That is why when we had the choice to buy the Auvi-Q, which was recalled last year and is currently not available, so many of us did. This auto injector made first-time or occasional use simpler than EpiPen by audibly talking the user through the process, which was particularly reassuring when our kids were being watched by others.
Personally, I am more drawn to another idea raised by Dr. Fugh-Berman: “Auto-injectors aren’t rocket science. There are even directions available on the internet for making a homemade auto-injector for under $30.” I love the concept of the EpiPencil, the homemade device that Dr. Fugh-Berman refers to. If I hadn’t been able to stock up on EpiPens before my deductible reset, I might very well be making one for home use. But even I would be worried about sending my kids to school with the bulky device in their bags. I know that my kids throw their bags around, sit on them, stomp on them – and I worry that it would not withstand that sort of treatment. The auto injector used in the EpiPencil was originally intended for diabetes patients, who I imagine are likely to take proper care of it because of regular use. It is also not clear whether teachers and other non-parenting adults would be willing to use it in case of emergency.
My personal favorite cost saving measure is using expired EpiPens. A study in 2000 in The Journal of Allergy and Clinical Immunology showed that essentially all Epi Pens still contain more than half of their epinephrine up to 7 years past the expiration date. Since the dose may be less than with an unexpired EpiPen, there is a greater likelihood of needing a second dose – but I have a whole drawer full of expired pens that could be used. The big problem with expired EpiPens is the concern that perhaps a teacher or sports coach would notice the expiration date, and decide not to use the injector. This is why, even though I am happy to use an expired pen at home (and have done so), I will not send them with my kids to school. It would be far better if we could get Mylan to extend the artificially short date on their Epi Pens (and there is talk that they will), or perhaps issue guidelines with readjusted weight limits for expired pens. But of course, they have an incentive to keep us buying more.
Happily, the Auvi-Q is expected to return in mid 2017, and there are other epinephrine auto injectors in development. We can wish that 2017 will be the year in which competition will cause the price to fall, so that everyone can afford to have the up-to-date and easy-to-use epinephrine injector that they need to carry, in the hopes that they will never need to use it.
* “Adriane Fugh-Berman, MD is an Associate Professor in the Department of Pharmacology and Physiology and in the Department of Family Medicine at Georgetown University Medical Center. As director of PharmedOut, a GUMC research and education project that promotes rational prescribing and exposes the effect of pharmaceutical marketing on prescribing practices….” http://explore.georgetown.edu/people/ajf29/
**This version of the wording is available at http://www.thehastingscenter.org/epipens-sale-fear/
Elizabeth Muller is the co-founder and Executive Director of Berkeley Earth,a non-profit research organization. Elizabeth guided the strategic development of Berkeley Earth from global warming data analysis, to climate communications, to global warming mitigation, and now, PM2.5 and global air pollution. Elizabeth has authored numerous scientific and policy papers, as well as Op Eds in the New York Times and the San Francisco Chronicle, and made numerous TV and radio appearances. Prior to co-founding Berkeley Earth, Elizabeth was Director at Gov3 (now CS Transform) and Executive Director of the Gov3 Foundation. From 2000 to 2005 she was a policy advisor at the Organization for Economic Cooperation and Development (OECD). In these positions, she advised governments in over 30 countries, in both the developed and developing world, and has extensive experience with stakeholder engagement and communications, especially with regard to technical issues.