An allergy & autism Mom brought to my attention a FARE (Food Allergy Research and Education) e-newsletter item “Efforts to Equip Schools with Epinephrine Intensify”.
The item is short, a mere three paragraphs long but the weary tale of disaster capitalism between the lines calls out. Repeated twice in the piece is the phrase “…many students who may need epinephrine may have no known history of allergy to food…”
Was FARE justifying stocking auto-injectors of epinephrine in all 98,817 US public schools based on the possibility that non-allergic kids might suddenly react?
Well, yes and no, as it turns out. This story of endemic disaster capitalism – fear assuaged by consumption -- is supported by enormous challenges within American health and education systems. Parents with school aged allergic kids seem trapped and scared.
First, for those unfamiliar with the medical device at play here -- what is an auto-injector?
It is a portable, pre-measured, spring-loaded emergency injection of epinephrine used to relax muscles temporarily and slow an allergic reaction. This automatic syringe patented in 1977 was designed originally for use by the US military. It was intended to administer a nerve gas antidote during battle. The first commercial auto-injector EpiPen was introduced in 1980. It continues to be sold with a prescription to those with life threatening anaphylaxis to food or other substances such as latex, bee venom.
And life threatening anaphylaxis is at the heart of FARE’s advocacy. They lobby for changes in laws, labeling, commercial policies and more. For example, FARE supports a Federal Bill legislating “incentives to require elementary schools and secondary schools to maintain, and permit school personnel to administer, epinephrine at schools”
I completely agree that auto-injectors must be available at all schools for those with anaphylaxis and that all staff must be trained in their use and allowed to use them. Sound redundant? No, the recent death of an allergic student is a bizarre and tragic case in point: a child with a known allergy but without an auto-injector had a reaction on school property. Shockingly, the school’s main office had a drawer of auto-injectors but staff were not permitted to use them.
To help prevent future tragedies, FARE continues to push for Bill 1884 and advocate for state level allergy legislation. 12 US states now have laws aimed at stocking their schools with auto-injectors. All US states are expected to follow suit over the next couple of years. All states with an epinephrine-in-the-schools law would be eligible for federal funds on ratification of Bill S. 1884.
FARE also supports Mylan’s Epipen4schools.com new marketing campaign (distributed by Bioridge Pharma). Mylan Inc. (Nasdaq: MYL) markets and sells Epipens (regular and Jr) made by Meridian a subsidiary of Pfizer (NYSE: PFE). These companies have just resolved their spat with Sanofi-Aventis that is poised to launch another auto-injector E-cue that is similar to their Auvi-Q, a voice-guided “talking” epinephrine injector.
But FARE is careful not to specify brand in their literature despite the push to stock schools because their donors include these self-same pharma giants: Sanofi-Aventis US is a Platinum supporter; and Dey Pharma LP a subsidiary of Mylan that sells Epipen is a Presenting Supporter of FARE.
And yet Mylan is first out of the gate on the new push to stock schools. They offer all qualifying schools four free Epipens after which the school can buy more at a discount. It’s basic couponing! See web site for details.
And what cash-strapped school doesn’t want free stuff and discounts? The price of an Epipen in the US has risen from $30. to $150. over the last few years. Every anaphylactic child needs at least two of these emergency devices – their effect lasts 15 minutes and so, actually, a child might even need three or four because emergency medical services in the US do not carry meds (only paramedics). In addition, the devices expire and must be replaced annually.
So, yes, a federal law for financial incentives available to all states with appropriate laws to equip ALL schools would be great, thanks, because here’s the retail breakdown:
$150. per pen that are packaged in pairs and perhaps 20 packages per school x 98,817 (US public schools) = $592 Million gross sales every year.
Naturally, schools would get a bulk deal through a bid process and heated competition between, again, Pfizer and Sanofi.
But returning for a moment to that phrase in the FARE e-newsletter: the stocking of auto-injectors in all schools is for students “who may have no known history of allergy”. To me, it seems unlikely that anyone with “no known history” would suddenly react willy nilly. The justification for a massive purchase of auto-injectors based on WHAT IF we have allergic kids does not make sense. Allowing and training all staff to use an auto-injector (despite obvious challenges such as liability) is crucial but how many injectors does a school need? If we are really scared at willy nilly reactions maybe we should double or triple the orders.
That could reach a billion dollars in auto-injectors every year.
I emailed FARE’s Director of Gifts and Regional Advocacy Jennifer Jobrak for an explanation. While waiting for her reply, I wondered if the reason for the ‘what if’ was simply that families could not or would not afford to see an allergist and thus were not able to be diagnosed and thus not able to buy an injector. And if diagnosed, could they afford the injectors?
I was suddenly rent by guilt for being so cynical and suspicious of big pharma colluding with the not-for-profit to sell millions of dollars in product where it was not needed. Was the system stacked against the allergic poor?
I couldn’t wait for an email. I called Ms. Jobrak right away. She was very articulate and passionate. She is an allergy Mom too. However, Ms. Jobrak did not or could not answer my question. She seemed a little confused and repeated that 20% to 25% of children have their first away from home reactions at school. Yes, I can see that, agreed. But these children have a history of allergy, they have been diagnosed. They know that they could react.
My cynicism crept back.
Was FARE selling its status to help their pharma donors over-stock schools with millions of dollars in auto-injectors where they may not be needed?
While this appears to be the case, there is more to the story. In conversations with US allergy Moms, I learned that conditions in the health and education systems are such that the more auto-injectors available at school the better in their opinion. This might as well be the US allergy Mom’s motto.
Truly, under-privileged families may not be receiving proper diagnosis or they cannot afford $300. or $600. for the injectors. Allergy Moms additionally fear that the ambulance may not make it in time. What if paramedics are unavailable? Again, not all ambulance services carry meds. And so, teachers despite being underpaid and overworked should be trained to use the devices.
And then there is the issue of a #504. Paperwork, meetings, interviews to prove whether your child has a special need and deserves legal protection. This echoes the lack of appreciation for the severity of anaphylaxis and the speed at which it can kill. One hears even from doctors that more kids are killed by lightning than by allergy – but that is largely thanks to hysterical helicopter Moms who sit in the classroom, lobby for hand-washing and food bans… which can be an obstacle in itself.
The writer of a recent article in U-T San Diego seemed so tired of hearing from allergy Moms that he looked forward to the day they were “covered by 6 feet of dirt”.
Meanwhile, legislation is being passed to help overstock schools with allergy meds. This in turn will improve shares in FARE’s donors and keep FARE in business. This relationship is not fully transparent but everyone knows. It’s an old story made more poignant by what it says about us: life-long medical consumers tied so tightly to pharma that we will pay anything to get the meds, pass laws, pimp and beg because we are so afraid our children will die of known or unknown reactions at school.
I know it. My son was diagnosed at age 1 in 1995. Parents feel that they are over a barrel … but while I can see part of the way out, I hesitate to offer more here. Perhaps in a future post…
In the meantime, as cynicism collides with compassion I give the final words to the woman who speaks so emphatically from Sanofi-Intelliject’s Auvi-Q talking auto-injector : “… this device should be taken to your physician for proper disposal and a prescription refill.”