Tag: Epi-Pen

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Food companies are adding sesame flour to foods that didn’t have sesame so they can “comply” with new labeling requirements by always labeling “contains sesame” instead of instead of adding it to their existing cross-contamination protocols.

Meaning people with sesame allergy are suddenly finding that foods they used to be able to eat are now hazardous.

This is like a skydiving outfit deciding to stop maintaining their parachutes and disavow responsibility in their waiver instead of complying with a requirement to maintain their parachutes a little better than they were doing before.

Actually it’s worse than that. It’s like actively damaging some of the parachutes, and adding fine print saying that people who want well-maintained parachutes shouldn’t fly with them. And not mentioning it to repeat customers outside of that fine print.

You wouldn’t add wheat to a dish just to avoid having to guarantee it was gluten-free. Or add lead to your water so you don’t have to worry about keeping environmental contamination out. Or…

Ugh, those sound way too probable. People can be awful sometimes, and business has a tendency to remove ethics from decision making.

Update: Malicious compliance is a good term for it.

Not the first time

And apparently this wasn’t the first time companies have done this crap, either. After the 2016 labeling law went into effect, some companies added peanut flour to foods that didn’t have it. Not enough to impact the baking or texture or flavor…but enough to trigger an allergic reaction.

Disturbingly, I missed that previous round. I say disturbingly because I actually am allergic to peanuts, so I’m lucky I didn’t end up in the ER from something that used to be safe. I can only think of two explanations for why I didn’t notice:

By 2016, I was doing most of my grocery shopping at some of the slightly crunchier stores, and buying snacks from smaller brands that were either less likely to take that shortcut, or already had foods I was allergic to by the time I took my first look at the ingredients panel.

2016 was also the year the Epi-Pen price-gouging scandal boiled over.

Corporations behaving badly

Pharma giant Mylan had already gained a virtual monopoly on epinephrine auto-injectors. After FARE spent years lobbying for states to require epinephrine to be stocked in schools for emergencies, Mylan raised the price of the auto-injector drastically (a factor of 5 or 6), to the point where many people who needed them couldn’t afford it anymore.

Whether FARE was used itself, or a co-conspirator who used its members, I lost a lot of trust in them and stopped following their newsletters as closely. That was also the last year I participated in FARE’s Walk for Food Allergy fundraiser, and I only did that after they stopped accepting money from Mylan.

(Interesting note: The Intercept article mentions that Mylan deliberately set out to stop selling single Epi-Pens in the early 2010s and only sell the two-packs in order to justify charging more. I was already carrying two-pack at my allergist’s recommendation, which turned out to be highly fortunate the time in 2006 or so when I was hit by anaphylaxis and messed up the first injection.)

Expanded from a thread on Wandering.shop

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The other day I grabbed a coffee and muffin while out walking, and found an out-of-the-way outdoor place where I could unmask and eat without being near anyone else.

It was weird! It felt like I was getting away with something. This sort of thing used to be normal, but now it isn’t… and that’s weird too!

I haven’t eaten at a restaurant in nearly a year. Not even outside on a patio when health orders have allowed it. (Though I have bought take-out.) This was only the second time since last March that I’ve eaten anything away from home except the occasional travel mug of coffee in the car. Not that I bother with that very often, since I rarely drive farther than the grocery store. I’ve even stopped carrying my Epi-Pen everywhere. I know I’m not going to eat until I get back.

I think the last time I ate at a restaurant was when I went out to lunch with some co-workers the first week of March, and we were talking about whether we wanted to switch to working remotely early, before the order came down. We knew it was coming sooner or later.

As it turned out, all of us who were there ended up spending just one more day onsite. The other two both started working remotely the next week, and I came down with the flu that weekend (at least I think it was the flu) and didn’t recover until the office closed.

I’m still at the same job, but that office? Gone. They’re moving to a new location for when onsite office work is a thing again. I haven’t been to the new office either, because it’s not ready yet, and everything’s in storage for now, presumably including the clutter I would have taken care of if I hadn’t been sick when the work-from-home order came down.

I hope I rinsed out my coffee mug.

And didn’t leave any food at my desk.

But hey, at least I know I didn’t need all of those hand-written notes!

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If you are told a child in your care has a severe food allergy, believe them. Don’t kill a three-year-old with a grilled cheese sandwich.

According to his parents, staff at the preschool knew about his severe dairy allergy, but an adult gave him the cheese sandwich anyway. He ate it, went into anaphylactic shock, and died in the emergency room. No word on whether they gave him epinephrine. (New York law allows schools to stock it, but doesn’t require them to.) Update: Apparently the school called his mother instead of 911. Want to bet paramedics could have helped?

“We will get to the bottom of what happened here…” says a spokesman for NYC’s health department, “and whether the facility could have done something differently to prevent this tragedy.” Well, yeah: Don’t give kids food that you know they’re severely allergic to!

Children with severe allergies know to avoid certain foods, but they need help to do it:

  • It takes time to learn how to avoid all forms of food you’re allergic to. I was seventeen before I learned that cross-hatches meant peanut butter cookies, because we’d never had them in the house. (Incidentally: that was the first time I actually used an Epi-Pen.)
  • Some foods have substitutes that look and taste similar enough that you could take a bite — and it only takes one bite — before discovering it’s the real thing. Sunflower seed butter for peanut butter. Daiya for cheese (and yes, you can make a grilled Daiya sandwich).
  • Ingredients can be hidden. There are an awful lot of pasta sauces that look like standard tomato sauce with herbs that also have cheese in them.
  • Kids that young have no choice but to trust the adults taking care of them. There’s a power difference. If you trust someone, you’re less likely to double-check them. And when you’re not sure? Not all kids can push back against an insistent adult, especially one they’re accustomed to depending on. (Keep that issue of power imbalance in mind when you read other stories in the news today, too.)
  • Preschoolers aren’t exactly known for their impulse control, so even the ones who have the courage to self-advocate won’t always stop to check before taking that first bite.

Maybe it was someone new who didn’t know yet. Maybe it was someone who didn’t take it seriously. Maybe there was a mix-up and he was supposed to get something else, but they handed him the cheese sandwich by mistake. All of those could have been prevented.

Yes, mistakes happen. Even fatal ones. But they happen a lot less often when you listen to people who are facing the danger, believe them, and take action to follow through on it.

1 in 13 children has a food allergy. Even if your child doesn’t, they have friends who do.

Don’t let them down.

Update on the case from Allergic Living (Nov 16):

The incident is still under investigation. It’s not even clear at this point whether the specific person who gave him the sandwich was aware of the allergy (though they certainly should have been), or whether they gave him epinephrine, though it is clear that:

  • The school was aware of his allergy
  • The school didn’t call 911, they called his mother instead.

The school has been closed pending the investigation results, and new directives have been issued that childcare staff will call 911 in the event of a medical emergency.

Another update from Allergic Living (May 2018):

  • The preschool didn’t tell Elijah’s mother that he’d eaten, so she thought he was experiencing an asthma attack. (This is also how I interpreted my first anaphylaxis experience at 17: as an asthma attack that didn’t respond to my normal medication. I didn’t know it at the time, but I could have died.) He didn’t get epinephrine right away, which might have saved him.
  • NYC has launched a major training program to help preschool staff understand and handle food allergies and anaphylaxis.
  • Elijah’s parents have been active in raising awareness of severe allergies in the community and online.

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Today I joined hundreds of people at the CBS Studios in Los Angeles to raise money for Food Allergy Research and Education through the FARE Walk for Food Allergy.

We skipped last year and decided to join this year’s event at the last minute. Rather than walking along the shore at Long Beach, this year’s course ran through the CBS Studios lot. It started on what looked like a suburban New England street, and wound past production trailers, soundstages, prop storage, and even the Los Angeles river….

Lots of people walking along a path above a wide concrete-lined trench. Trees on either side, blue sky beyond.

…such as it is. Other parts of the river are much nicer, even navigable at times, but this stretch is basically a concrete drainage ditch inside a bigger drainage ditch. It looks bleak now, but during flood years the channels fill completely, preventing the city’s streets from flooding instead.

Wait, Walk for What–Who–Why?

FARE funds studies to explore the causes of food allergy and develop new therapies. They run outreach programs to make it safer to visit restaurants, or just be at school or the workplace.

Food allergies can range from mild to life-threatening — yes, people die — and those of us on the far end of the range need to be constantly on the watch for hidden ingredients and cross-contact between foods we can eat and foods we can’t.

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On every news story about someone who experienced a severe allergic reaction outside the home, there will be someone who says, “If it’s that dangerous, why would you even risk it? Keep your kid at home and make all their food yourself from scratch all the time!”*

Let’s think about this.

A car could kill your child. Today, tomorrow, years down the line. This is not a hypothetical. This is a fact, and it’s a risk that you live with.

Why on earth would you risk letting your child cross the street? Keep them at home! Don’t let them out of the house in case someone jumps the curb!

That’s…not exactly practical, is it?

You don’t keep your child inside 24/7 to avoid cars. You take them outside, with precautions. You teach them to stay on the sidewalk, cross at corners and crosswalks, and look for cars before crossing. You walk with them until they’re old enough to walk safely on their own.

You rely on drivers to follow the rules of the road…but you still look both ways in case someone’s distracted or feels entitled and plows through a red light anyway.

And then your children can live their lives out in the world instead of being frightened recluses who hide in the basement whenever a car goes by.

You can’t eliminate risk 100%, but you can manage it.

The exact balance is going to be different for each person with an allergy.** But it’s not unreasonable to expect the food industry to follow basic safety procedures to avoid cross-contact — and to not introduce a danger that wasn’t there to begin with.

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*Even if you have the time to prepare every meal at home, there’s still the risk of mislabeling or cross-contamination in the supply chain. Right now, there’s an ongoing recall of baked goods produced with peanut-contaminated flour. A year ago, supplies of cumin were tainted with peanuts. That impacted everything from prepared foods down to bulk-bin spices. Everyone’s at risk with the massive listeria recall of vegetables, allergies or no.

**Heck, it’s different for each of my allergies, and I’m one person. I’ll cheerfully walk into a coffee shop that serves almond milk and soy milk, but won’t set foot in one of those burger places that plops a bin of peanuts on the table. Even with my Epi-Pen. That’s just playing live-action Frogger.