Tag: FARE

Posted on
by

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

Posted on
by

OK, this is a bit morbid, but bear with me.

Most news stories about deaths from food allergies feature children or teenagers, maybe young adults in their twenties. You read about grieving parents. You rarely read about the 40-year-old who leaves behind a grieving spouse and kids.

Food allergies send a lot of people to the emergency room: 200,000 annually in the US alone according to FARE. Almost all are successfully treated. But people do die from anaphylaxis, roughly 63–99 each year in the US according to AAAAI.

So why are the fatalities we hear about so young?

Is it just demographics? Allergy prevalence has been increasing, after all, so kids are more likely to have food allergies than adults are.

Newsworthiness? A three-year-old dying at day care tugs at the heartstrings in a way that a 38-year-old dying from takeout doesn’t.

Is it onset age? A reaction is more likely to kill you if you don’t know about the allergy yet, don’t know you need to carry epinephrine, and don’t know that the warning signs mean “hospital now!” and not just “lie down and try to get through the asthma attack.” By the time you’re an adult, you’ve probably already encountered everything you might be allergic to, so you’re less likely to get that surprise first reaction. It happens – I’ve known people who developed shellfish allergies as adults, and I found my own nut and peanut allergies expanding their range in my early 20s – and there’s the Lone Star tick – but it’s less likely.

Are adults more careful? Teenagers take more risks. Children often have to rely on secondary caregivers who don’t always have the training or understanding that their parents do. And of course, the longer you deal with something, the more it becomes second nature. Is it that we’ve gotten better at avoiding triggers, keeping our medication on hand, and seeking treatment faster?

Are you more likely to have died of something else in the meantime? According to one NIH study, “Fatal food anaphylaxis for a food-allergic person is rarer than accidental death in the general population.” So the longer you live, as long as you’re taking precautions with the allergy, chances are that something else will kill you before the allergy can.

I suspect all of these are factors, but I do wonder how they balance.

Posted on
by

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.

Continue reading →

Posted on
by

Bins of plastic pumpkins, some colored teal. The Teal Pumpkin Project logo is visible on the bin label.

Cool: Michael’s is selling plastic teal pumpkins for people who plan on offering non-food treats for allergic trick or treaters as part of the Teal Pumpkin Project. You can still paint a pumpkin teal, of course, but this simplifies the setup. (Are we really that close to Halloween already?)

Posted on
by

Teal Pumpkin

The idea behind the Teal Pumpkin Project is to offer alternate Halloween treats that aren’t candy, so that kids with severe food allergies can still go Trick-or-Treating. It started last year in Tennessee, and FARE picked it up and promoted it nationwide this year.

When I was a child, I always had to either decline or discard some of my Halloween candy because of my peanut allergy. Fortunately it wasn’t life-threatening for me at the time (that came later), so I could separate them out at the end of the night. A lot of kids develop severe allergies younger than I did, and a lot of them are sensitive enough that the risk of cross-contact — whether in the candy bowl or at the factory — is a major issue.

So in addition to candy, we picked up an assortment of pencils, plastic dinosaurs, hair ribbons and more, and kept them in a separate tray. We painted a fake pumpkin so we could keep it around (though we’ll have to go over it again with better paint or maybe a coat of primer next year), and set it out front where it could be seen from the street. (Update 2021: You can buy plastic pumpkins in teal from a lot of stores these days!)

I’m not sure how many of the kids who chose the toys over the candy did so because of allergies, but we had enough of both to go around.

Posted on
by

FARE Walk along Long Beach

This year’s route for the Walk for Food Allergy was a lot longer than last year’s, when we walked out along a jetty and back. That was a comfortable 1½-mile round trip surrounded by ocean. This was 1½ miles each way on a path along the beach, surrounded by reflective white sand, in the hot sun, with no shade. (Hey, at least it wasn’t last weekend, when it hit 99°F.) In fact, since the signs ran out about halfway there, a lot of us started to wonder if maybe we’d missed the turnaround.

Some families turned around early. We almost did, but spotted a sign on a table full of water bottles not far ahead, and we decided to go at least as far as the water. We asked the woman staffing it where the turnaround point was, and she told us that was it.

Wait, Why Were You Walking?

15 Million Reasons to WalkEvery year, FARE sponsors events around the country to raise money for research and education, and to increase awareness of food allergies. 15 million people in the US alone have food allergies — and for a lot of us, it’s severe enough to be life-threatening. FARE sponsors research into treatments and prevention, provides educational resources, and advocates for allergy-friendly policies and laws.

You can still donate through December 31 if you want to help!

We’ve been walking in the Los Angeles event for four years now. Our first year was in Santa Monica. It moved to Long Beach in 2012. That year the planned route was blocked by construction and it took about ten minutes to walk. Last year was the jetty, and this year we walked from the western end of Marina Green Park, across from Rainbow Lagoon, along the beach to the Long Beach Art Museum.

Obstacles

The registration area always has tables for the event sponsors: food companies with allergy-friendly samples, pharmaceutical companies that make epinephrine injectors (since that’s basically the only reliable treatment for an anaphylactic reaction once it starts), and local medical and support groups.

Bouncy SlideLately they’ve also had a bouncy obstacle course and slide for the kids. Last year, J (almost three at the time) desperately wanted to go through it, and we wouldn’t let him because we thought the walk was about to start any minute. Then one person after another went up on stage to talk, and we realized he would have had plenty of time, but then the walk did start. We told him he could go on it when we got back…but we returned to see it being deflated.

This year, we made an effort to get there early, and we didn’t bother pulling him out until everyone had left the stage and they were calling us all to the starting line. He went through the course more times than I could count. We didn’t drag him away until they ran out of people onstage and told everyone to head for the starting line. (Of course this year they kept it inflated afterward, but we were too tired and hungry for it to matter.)

Wrapping it up

We finished up the afternoon with lunch at The Potholder Cafe Too, which reminded us of Broken Yolk Cafe in San Diego. They specialize in all-day breakfast — many, many varieties of all-day breakfast — but have sandwiches and burgers as well. I think I know where I’m going to grab dinner when I go to Long Beach Comic Con next weekend!

Posted on
by

The Walk for Food Allergy that I’ve been plugging over the last couple of months was held this Sunday. We drove out to Long Beach to join several hundred other people in the walk to raise funds for the Food Allergy and Anaphylaxis Network. You helped us raise $1,342.15, putting our team into the top 5, and the event overall raised $45,360 before offline donations are counted. The money goes to FAAN and their mission to support food allergy research, education, awareness and advocacy. FAAN sponsors a series of these events throughout the year, so if you’d still like to make a donation, you can contribute through December 31.

Because food allergies are on the increase, a lot of the people affected by them are children, so there were a lot of families at the event. I remember last year featuring a stage and information booths for support groups, medical groups and allergy-friendly food companies like SunButter and Enjoy Life. This year they also had an inflatable slide and a rock climbing wall. (The organizer said that they moved it to Long Beach so that they could get that wall.)

Continue reading →