Currently Available Low-Cost Epipen Alternatives Are NOT Safe!

I have another post coming about the high prices of epipens coming, but this topic is worth its own post:

In an emergency, an manual draw epinephrine injection kit is NOT an appropriate replacement for an autoinjector, and the syringe based auto injectors are NOT an appropriate sub for a cartridge based autoinjector!

A cartridge-based autoinjector is the SAFEST and most SURE way to save lives in an anaphylactic emergency, and carrying anything else could cost even more lives. As it is, fewer than half of patients in a 2015 study were able to correctly administer epiniphrine using the brand-name autoinjector.

  1. For people who are not medical professionals, draw time on a manual injection is too slow. Seconds count, and an average parent trying to inject their child takes two and a half minutes to draw up.
  2. If you have having even a moderate reaction you will be too compromised to inject yourself with a manual draw. Anyone who has ever fumbled around looking for their asthma inhaler, benadryl, or even car keys to get to those things, knows this from experience. Trying to draw up, remove air bubbles, and then *remove your pants* to inject yourself during anaphylaxis is out of the question.
  3. The syringe based auto injectors such as the adrenaclick may not deliver a sufficient dosage of epi.
  4. Syringe based solutions, either manual or auto injection, cannot be used through clothing. Clothing must be removed or cut away, costing seconds that could be the difference between life and death.

Related posts:
MastAttack: No, using the manual syringe/vial method is NOT the same as using an epinephrine autoinjector

SciBabe: WHY YOU SHOULDN’T USE THIS METHOD TO SAVE MONEY ON THE EPIPEN

What My Winter Prep Looks Like

I can only eat food from a few specific farmers so I have to put up what is growing when it’s growing if I want to eat in the winter. Because of other allergies, my “lockdown season” has been from November until June. One of my farmer-mommies began planting some winter crops I could eat so my lockdown is now from about January to June.

People frequently want to know what it looked like when you can’t just run out and buy food for half the year, so I took these pictures. What I have put up I will probably eat about 60-70% of this year, to myself. The large volume is mostly because I can’t eat any grains or starches due to not having safe sources. Corn is my anaphylactic and most sensitive allergy but I am also allergic to eggs, soy, and dozens of vegetables including all of the ones that grow in cold weather such as broccoli and cabbage.
PLEASE NOTE that the mason jar lids shown here are NOT safe for canning for most and may not be safe for frozen or dried storage for many. The BPA free canning lids from Ball and Kerr contain a resin that contains some corn. I personally can jar things with them but cannot have stuff that was canned (boiled in hot water for a long time) with them.

ANOTHER NOTE for people buying freezers- you want MANUAL DEFROST for any long term storage. “Frost Free” freezers are dehumidifiers which will eventually freeze dry your meat if it is not in a 100% airtight seal. My safe meat packaging is ziplocks, so those are not true hermetic seals at all.  I also observe, although the internet at large contradicts me, that frost free freezers contribute to MUCH faster freezer burn in all of my food.  I have meat in my manual defrost freezer from well over a year ago that is still totally fine, and it wouldn’t last nearly that long in a frost free freezer.

 

 

Clockwise from upper left:

  1. Dry storage & lactoferments: home dried & ground paprika, dried tomatoes, dried sweet & hot peppers, dried tomatoes, celery, more dried tomatoes, spicy pickled cucumbers & ancho peppers on to ferment still.
  2. 20 cubic foot upright freezer #1: Jars upon jars of fruit purees, tomato sauce, foodsaver vacuum-sealed bags of green veggies, pear sauce, a LOT of peaches, frozen grapes, and berries.
  3. 20 cubic foot upright freezer #2: Cucumber juice (yes really), more tomato sauce, fruit purees, more peaches, berries, and some pecans I never got around to shelling because they are a pain in the rear.
  4. 20 cubic foot chest freezer: These really are the best for fitting way more than the same cubic foot in an upright, not accidentally leaving open slightly & losing a bunch of food, and not building up with frost as quickly. However omg keeping them organized. I used the inserts that come with the freezer for the bottom part and then stacked these sterilite bins on top so i can easily remove the bins and see what’s below. best I can do for organizing.
  5. 4.4 Cubic Foot “all fridge” minifridge. This is my backstock mini-fridge. I unplug it when I don’t  need to store more produce than my regular fridge can hold. At the time of this picture it contains cucumbers I need to process still, and pickled veggies that are done fermenting.

How the Soaring Prices of Epipens Are Affecting Our Safety

There’s been a lot of buzz lately about the excessively high prices of the brand name Epipen autoinjector. In 2007, a single brand-name autoinjector was $50, and now it’s $300. And that’s just the wholesale price to the pharmacy. I’ve seen reports of pharmacies almost doubling that price and billing patients $1200 or more for a twin-pack.

You don’t need me to tell you that this price hike is unnecessary and unethical.

The medicine inside of the injector is about $1 per dose, but it’s not really the epi you’re paying for- it’s the delivery device. That however can’t possibly cost even close to $300 per pen, which is the minimum wholesale cost to pharmacies. (The pens only come in a twin-pack and should always be carried in pairs.) Obviously if at one time the price was only $50, the pens must cost some amount less than $50 to manufacture. I can understand that manufacturing costs rise over time, but I sincerely doubt that they rose by 600 percent. This is price gouging. It is unethical profit maximization at the expense of people–CHILDREN–who NEED the medication to stay ALIVE.

The “Low Cost” Alternatives Are NOT Safe Alternatives

Yes, it is THIS SPECIFIC medication and delivery device that we–and our allergic children and loved ones–need. This point is important enough to warrant its own post: In an emergency, an manual draw epinephrine injection kit is NOT an appropriate replacement for an autoinjector, and the syringe based auto injectors are NOT an appropriate sub for a cartridge based autoinjector!

  1. For people who are not medical professionals, draw time on a manual injection is too slow. Seconds count, and an average parent trying to inject their child takes two and a half minutes to draw up.
  2. Even if you are practiced at drawing and injecting, if you have having even a moderate reaction you may be too compromised to inject yourself with a manual draw. Anyone who has ever fumbled around looking for their asthma inhaler, benadryl, or even car keys to get to those things, knows this from experience. Trying to draw up, remove air bubbles, and then *remove your pants* to inject yourself during anaphylaxis is almost always out of the question.
  3. The syringe based auto injectors such as the adrenaclick may not deliver a sufficient dosage of epi.
  4.  Syringe based solutions, either manual or auto injection, cannot be used through clothing. Clothing must be removed or cut away, costing seconds that could be the difference between life and death.

The $0 Copay Card is Not a Solution

In response to the uproar over the increased Epipen pricing, Mylan announced they would “halve” the cost Firstly, the $0 copay card never was $0 copay. It was up to $100 off a twinpack, which would only be $0 if your copy was $100 or less. Secondly, it could not be used by anyone who didn’t have insurance, or who had Medicare/Medicaid. Thirdly, it was not legal in every state. In response to the outrage, Mylan raised the value of their coupon to $300, and that STILL isn’t good enough: Assuming you were even eligible to use the card, *someone* would be paying up to $300 for your epipen. If not you, then your insurance company.

Here is an article on WebMD about why the coupon isn’t truly saving us money.

The Generic Option is STILL Too Expensive

Back in February of this year, the only product comparable in ease of use to the Epipen, the Auvi-Q, was recalled due to potential dosage delivery issues. In April, it was announced that a new company would begin working on the delivery issues and try to put the Auvi Q back on the market. A few months later, Mylan hiked the price of their brand name product up by double.

Only three weeks after *that* Mylan announced release of their generic,  with a wholesale cost of $300, which is the same as the Epipen brand name before the price increase.  News rticles made it sound like the generic release was in response to the public outcry, but if it were reactionary and not planned, there is NO WAY they would have it ready to go only 3 weeks after the price hikes. They obviously anticipated the outcry and planned ahead how to respond.

To Put it Bluntly: This is F***ing Garbage

This was obviously planned, and obviously an attempt to maintain their profit margins in the face of possible competition. As I already said, it is price-gouging, and the victims are disabled people, and disabled CHILDREN.

I’ll spare you the detailed conspiracy theories. I’m not a journalist, just an allergy and chronic illness patient who’s trying to share some information with her fellow patients. I’ll link to a few articles with lots of information. Draw your own conclusions.

NPR: EpiPen’s Dominance Driven By Competitors’ Stumbles And Tragic Deaths

Chicago Tribune: How Mylan, the EpiPen company, maneuvered to create a virtual monopoly

Bloomberg: How EpiPen’s Price
Rose and Rose

Forbes: Why Did Mylan Hike EpiPen Prices 400%? Because They Could

 

Back To the Point: Do Not Risk Your Life on Low Cost Alternatives

Please, if have any other options, do not try to save money on an alternative to the Epipen that will put you or your loved ones’ life in danger. If you don’t have any other options and truly cannot afford an autoinjector that you *know* will deliver the correct dosage of the meds and that you can use reliably and correctly in an emergency, please ask for help affording one. If no one can help you, please, please, please tell me, tell the news station, tell everyone you can about it. I know that this doesn’t help you right now, but the more people hear about situations where people are literally risking their lives because they can’t afford life-saving medication, hopefully the more pressure Mylan will feel to correct their problems, and the more demand other companies will see for a functional and safe alternative.

Sick of Being Sick: Letter from a Reader

Following is a letter from Travis that I feel is an all too common story. I’ve pasted his entire letter below with his permission, but the summary is that he has finally figured out that food is at least part of what is making him feel so sick, however he’s feeling overwhelmed and frustrated in trying to figure out WHICH foods, and how to eliminate them without starving.  My lengthy response is also below. Spoiler: I can’t really tell him what to do, but I can offer some direction on how to figure it out.

Hi Corn Allergy Girl,

I feel weird calling you that but I don’t actually know your name. Since I was about 10 years old I’ve always felt sick experiencing symptoms that have affected nearly every functioning piece of my body. It started out with just the and swelling of the joints in which I would take an over-the-counter NSAID of some sort and later, see my doctor in which he would denounce as growing pains. Sometimes the pains were so intense I’d start bawling because my shoulder or knee were throbbing and there wasn’t a pain reliever on or off the market that would touch the pain. At thirteen the symptoms spread to my stomach. A lot of things I consumed would hurt my stomach sometimes leaving me in the fetal position in so much pain. Later on, I’m diagnosed with an infection known as h. pylori found by a colonoscopy. The doctor treats me for it and my stomach doesn’t hurt as bad for a while. When we go back for a reevaluation I tell her my symptoms are still present but she says the ailment probably left me with Irritable bowel syndrome so I accept that.

Continue reading

Warning: Possible problems with new Ziploc bags

Ziploc brand bags have been a go-to for corn allergy people for some time now. Plastics can be an issue for corn allergies, but the particular plastic in ziploc bags was from petroleum and was not dusted or oiled with anything. I personally have been using Ziploc bags for freezer storage, cosmetic and utensil storage, packing while traveling, and even to package my custom processed meat. Well, as it turns out, nothing good can last forever, because there may be an issue with the new version of the Ziploc bags that hit the shelves a few weeks ago.

The new bags have an “easy open tab” and look like this.

ziploc

In addition to the new closure, the bag itself is a different texture, simultaneously thinner and shinier, and a couple of the very, very sensitive folks have reported reactions to it. One of the people reporting reactions was also the first to notice an issue with the new Ball BPA-free canning lids, so I am minded to heed this warning and exercise caution. Around the same time as people started reporting reactions, i started having some signs of mystery inflammation that started around the same time as I started using the new bags here and there. I also added back the honey that I had run out of for a few weeks that had been safe for me previously around that time, so I have cut them both and will update this post if re-introduction reveals a clear culprit.

For now, I would not panic, just exercise caution with these new bags. If you are in a delicate health state or have delayed or hard to pin reactions, I would not try them until you have your diet otherwise stable so that you don’t get confused about what the cause of any potential issues is.

I have not done any work to contact Ziploc and find out what they say changed or not, I am only reporting reactions at this time. if someone does correspond with Ziploc and wants to post those results here, that would be welcome.

Corn Free Canning

Spring is here, and for those who need to avoid grocery store produce due to sprays and cross contamination, that means food preserving.  I have done a little bit of canning, but I’m no expert: I’m here to talk about avoiding corn in canning supplies. If you have questions about how to actually do the canning safely or how to make your canned goods taste *good*,  that is a question for someone else.

Avoiding Corn in Canning

Lids & Jars

The standard glass canning jars available in the grocery store are perfectly safe for a corn allergy. Rather, it’s lids are the single biggest concern for corn allergy in canning. The new Ball BPA-free lids are NOT corn free. I don’t think anyone has been able to get a detailed answer from Ball about what exactly is in the resin, but something in it is causing many corn allergics to react, and NOT just the most sensitive folks. Some are even breaking out in a rash from touching the lids. I had thought for a time I was okay with them because I was able to store non-canned food in them. Turns out that the resin in the seal was simply staying on the lid and not touching the food. Once I water-bath canned dozens of quarts of (expensive, mail-order) mandarin oranges, I discovered that when the boiling water melts the resin and creates a seal, it also infuses all of the water with corn. My non-allergic friends and family have been enjoying my delicious, now-corny mandarins all winter.

One possible option other than the Ball canning lids is Tattler reusable canning lids.

I’ve been using the Tattlers and so far, so good, but I’ve done basically two batches of applesauce so far and not much else. Updated August 2015: Yeaaahh I think I had a mild reaction to applesauce canned with the old school tattler lids. On top of that, right after I bought a bunch of them they changed their lids to be “new and improved” and have a better seal. No definitive reports on safety.

Another alternative is to use the Weck canning system. These are reported safe by several corn allergics. I haven’t tried them quite simply because they are expensive. The seals on the Weck jars are natural latex rubber, so NOT safe for a latex allergy.

There are a couple other kinds of canning lids, but I don’t know anything about them. If you have some options and links and contact info to the companies, please comment below.

Ingredients

As always, any ingredients you use in canning need to be safe for you. Application of heat can denature some allergens for some people, but so far I haven’t heard of anyone with a corn allergy being able to eat corn just because it had been cooked enough.  Here are the biggest concerns with canning:

Salt

Salt can most definitely be corny, so use something that you know is safe for you. Any safe salt should work fine instead of “canning salt.” The main reason to use canning or pickling salt is that it will not have minerals which may alter the appearance (but not taste or safety) of your canned items.

Sugar

Sugar can be cross contaminated with corn. Make sure to use something you know is safe for you.

Lemon Juice or Vinegar

Botulism requires an anaerobic (no air) environment and low acidity to grow. Adding an acid is a common way of making a low-acid food item such as a vegetable or some varieties of tomatoes safe for water-bath canning. Both pre-squeezed lemon juice and vinegar are commonly corntaminated. In the case of vinegar, it’s actually typically  made *from* corn. There are vinegars that are not made from corn, though many of them are contaminated in some way. If you have a safe premade vinegar, great. Do NOT use your own homemade vinegar though, unless you have a way to be 100% sure that it is ph 4.5 or below. Similarly, the FDA’s official recommendation on lemon juice is to only use the bottled stuff because it has a standardized acidity. Of course this standardized acidity can be achieved by adding corn-derived acids, so that is no good for us. If you have a bottled lemon juice that works for you, great.

If you don’t have safe vinegar or lemon juice, probably skip these recipes and convert them to pressure canned recipes instead, which do not require a high acidity since the high heat of the pressure canner will kill all botulinum spores.

General Canning Resources

If you are new to canning, I recommend that you read up on canning safety. Even if you have some basic familiarity, you may want to review. Safety recommendations have changed in the last decade or two, so what you learned from your grandmother may not be safe.  Botulism is a real concern with canned goods, even today, so it is important to follow temperature, acidity, and cook time guidelines in well-tested recipes. The below resources can teach you about canning in general, but be aware that the recommended ingredients may not be safe for you.

National Center for  Home Food Preservation (UGA)

Ball/Jarden Official Website

Pick Your Own

Punk Domestics

Corn-tamination Series: Where’s the Corn in Cheese?

Cheese is actually a difficult prospect for many folks with corn allergies. In fact, I’ve had some of my most surprising severe reactions from cheese. It seems like such a simple product, and I’ve had a few cheeses that nearly sent me to the hospital from just one bite!

I don’t know if I have the whole story here, but here are potential corn allergy issues I’ve identified with cheeses:

  • Production: -corn starch dusting mold and I think also sanitizers which are almost always corn based used on equipment.
  • Packaging: Plastic wraps dusted in corn starch, wax papers waxed with corn-based wax or dusted with corn starch. For rounds that are coated in wax, the wax itself could be corn based or could contain a dye that is corn based.
  • Re-packaging. When cheese shops and grocery store cheese counters cut the wheels and repackage slices, their equipment may be cross contaminated with corn products, the cleaner on it is cleaned with a corn based sanitizer, and the plastic wrap itself is often dusted in corn starch.
  • Starter cultures, rennet, and enzymes. The Wikipedia entry on Rennet has a good overview of what rennet is and how it is produced.  There are 5 types of coagulants in cheese making:
    • Animal Rennet: Enzymes that coagulate cheese are harvested from the stomachs of calves. While this is a problem for vegetarians, it is one of the safer cultures in cheesemaking for a corn allergy. However that doesn’t mean it’s always safe. Animal rennet can contain all kinds of preservatives that are commonly derived from corn. This ingredients list for a liquid animal rennet contains: propylene glycol, caramel color, flavor, sodium benzoate, potassium sorbate, all of which are likely from corn. So the safety of the cheese will just depend on the source of the rennet.
    • Vegetable Rennet: Many plants produce coagulating chemicals. This can be a variety of sources from caper leaves and thistles to phytic acid from soybeans, and yes, probably corn. I can’t find any evidence that coagulating chemicals are ever extracted from corn, just guessing. However even if they aren’t, the same preservatives listed above are often included in the vegetable rennet packaged for resale. Here’s one ingredients list that includes acetic acid and sodium acetate.
    • Microbial Rennet: Molds that produce coagulating enzymes are cultured to produce the coagulants. Can be cultured on a corn sugar medium and of course can be preserved with corn-based chemicals similar to animal rennet.
    • Fermentation-produced Chymosin. This is a genetically engineered product. Rennet producing genes are extracted from animal stomachs and inserted into various bacteria, fungi, and yeasts to make them produce chymosin when they wouldn’t normally. Then the chymosis is produced similar to microbial rennet, via fermentation, probably on a corn sugar medium.
  • Dyes. Many cheeses are colored with anatto, which can be from corn, or another dye that is corn-based.

So How Do I Find Safe Cheese?

For me personally, I find that artisan cheeses imported from cheese-loving european cultures such as France are better bets. I really don’t know the details of why that’s true, but I am guessing all of the possibilites for “incidental corn” listed above are just lower in those cultures due to small-batch and traditional practices. I have found a couple american-made cheeses that are okay, but the percentage is very small and often they worked for only a time before something changed and I started reacting. The problem is that corn-based chemicals are so widely available here for so many things that eventually the suppliers upstream of the cheese producers will change and previously safe food will become corny.
Something else I am finding is that I have to buy whole rounds.. when big grocery store counters cut the wheels and repackage, their equipment is not just cross contaminated, but also the cleaner on it is cleaned with a corn based sanitizer, and the plastic wrap itself is often dusted in corn starch. I could work with a small shop to cut me a fresh piece from a wheel using equipment cleaned with safe cleaners, but I just haven’t taken the time, instead buying products that come from the manufacturer individually packaged. Provided that the original packaging is safe of course.