Last week my son suffered a severe anaphylactic allergic reaction. He nearly died.
While we suspect it was caused by a single pumpkin seed, we can’t be sure until we start allergy testing in around five weeks time.
The second most disturbing thing, after almost losing my son, is the crazy, dirty world of pharma politics.
There’s a global shortage of Epipen jrs, the adrenaline autoinjectors for kids which need to be used straight after an anaphylactic allergic reaction. We’re based in Chile, one of many countries facing a shortage.
Call this an alternative?
The alternative to using an Epipen is to administer adrenaline directly with a syringe, but this isn’t ideal for two reasons.
Firstly it’s a little fiddly. You try breaking open a glass vial, filling a syringe to just 0.15ml (that’s just over a fifth of a teaspoon by the way), then injecting it into a squiggly two year old, all whilst dealing with a crying newborn and an excited four year old. Believe me, it ain’t so easy.
Secondly, imagine you face a (still scary) false alarm and it’s wasted. Because the syringe takes a little while to prepare, you’ve got it ready just in case a reaction turns truly ugly. You’ve broken the seal and the syringe is no longer sterile.
This happened to us. After his reaction, Rafa developed a lump on his neck which seemed to be growing at an alarming rate, and causing him horrible pain. I took the doctor’s advice and had a syringe ready to go, just in case. Thankfully the ambulance arrived in time and he was OK.
But now we only had one vial of adrenaline left. And we were told always to have two ready.
Not for sale
So I went to the pharmacy to stock up.
But they didn’t have any. Nor did the other pharmacy over the road. Or the next.
Then I was told that for legal reasons, pharmacies aren’t allowed to sell it. Only hospitals can.
So I returned to the hospital and explained the issue.
But they couldn’t sell me adrenaline either. It was against the law, they said. It was only available for hospitalised patients.
So if you’re a kid in Chile and you’ve lost your Epipen jr, the only way to get more adrenaline (legally) was via an attack. Hmmm.
Ecstasy over Epipens
Eventually I did track down an extra vial, but the person who gave it to me broke the law to help me. And they told me to ‘never, ever do this again, because the implications [were] serious’.
So what should I do if it happened again? What should I do if I ran out?
Pharmacies can’t sell me adrenaline, hospitals can’t either. There were no Epipen jrs in Chile and I was told the government is blocked from offering an alternative autoinjector.
So the person who gave me the insulin reluctantly assured me I should come back if I had any issues, ‘but please try not to… and don’t tell anyone. Just come straight to me’.
Let’s be clear. We’re talking about a life saving drug for my two year old, not some underground clubbing high. In fact I’m told ecstasy is easier to get hold of.
The price of monopolies
A generic alternative to the Epipen jr (Impax autoinjector) cost a friend $168 USD (£130GBP) for a pack of four in the U.S.
Here in Chile Epipen jrs cost $127 CLP (over $190 USD, almost £150 GBP) each.
Due to the Epipen Jr shortage issue, Canada made an alternative to the Epipen jr available (Auvi-Q 0.10mg). In the UK, doctors are prescribing an alternative called Emerade. I was told that Chile isn’t allowed to import either, however.
Some countries, such as Australia do have better supplies and no prescription is necessary. But I’m told that Chilean customs won’t allow Epipens to be shipped to patients from abroad. There are ways to get round it, but it’s complicated and contacts come in handy.
British newspaper, The Guardian, wrote in 2016 that ‘since buying up the exclusive rights to the EpiPen in 2007, the pharmaceutical company Mylan increased the price … more than 400%‘ and that ‘almost every case of outrage over pharmaceutical prices traces back to a company that has exclusive rights over a medication’.
Learning the hard way
Mylan did respond to my appeal for help over Twitter. After a phone call I was assured that Epipens would be made available in Santiago in the upcoming days and they kept their bargain.
But in the meantime I was left scrambling for help, messaging, tweeting, calling, texting hundreds of people around the world. I was without this life saving drug for over a week. I’d been told by doctors I’d have to wait one to two months.
But what about the Chileans who aren’t fans of social media? What about those who can’t afford the cost of an Epipen? What about those who don’t have friends across the world to help?
What about travellers or expats who lose their Epipen and can’t get any form of replacement? Should they just hope for the best on the flight home?
Is it the government’s fault for not allowing an alternative drug? Is it the drug manufacturer’s fault for forcing a monopoly on the country? Or the clinic’s fault for misinforming patients about how to access the drugs? Or my fault for not doing enough to change the system?
Fingers crossed we’ll be getting our Epipens later today.
I don’t pretend to understand the complexities of pharma politics. I’m very new to this game.
I just want my kid to be OK.