A Contract of Adhesion (or: Paying for Priceless Medicine)

A Contract of Adhesion (or: Paying for Priceless Medicine)

In law, the term “contract of adhesion” refers to a deal between parties that are so disparate in their bargaining power as to leave one of them with all the say-so and the other with no other option but to go along with the terms.  Contracts need not be written, a contract is an enforceable promise.  So while some specific laws may require something to be in writing (say, an agreement regarding selling or buying a house), other contracts can exist just from the moment promises are exchanged (like one person promising to do work and the other person promising to pay when the work is performed).

In its own way, purchasing an item at the store is a contract.  You are paying some agreed upon amount and in exchange you receive rights to that item.  Sometimes the rights are broad, such as if you buy a tomato you can eat it right away, cook it, give it away, or forget about it on your counter.  Other rights are limited, such as if you pay for prescription medication, you have the right to use it as directed for the named person.

These types of agreements exist and are often enforceable because there are situations where the bargaining power is unfairly held and there’s nothing one can do about it.  Contracts of adhesion are on my mind as I contemplate rising costs for epinephrine here in the US and a dearth of choices in response.  In other words, I am wrestling with news that Auvi-Qs in the United States have gone up in price.

Increasing Costs (Approx. $200 Increase!)

I read every comment that comes through on the blog and so appreciate the updates I get from readers about food allergy issues.  One hot topic in this space centers around epinephrine auto-injectors.  A while back I was upset to find that I could not buy an injector for my daughter that did not expire too soon.  I have to pay cash prices for medication under our insurance so all the coupons and promotions out there would not defray the costs we faced.  Some families have multiple sets of auto-injectors, we have one set and my daughter also has self-carried (when away from me) since age 4.

At any rate, here’s the detailed comment that came through from a reader named Kelly:

I’m coming into this thread of comments almost a year late, but I wanted to share how helpful Sanofi was regarding the short expiration dates on Auvi-Q. I purchased a 2-pack of Auvi-Q in August 2014 with a March 2015 expiration date. The retail cost at that time was $396 at RiteAid. I purchased another 2-pack in September 2014 with an expiration date of May 2015. Same price…$396 at CVS. I contacted Sanofi by telephone and told them I was disappointed that the expiration date was so soon, and they connected me to someone who asked a few questions, then gave me an email address and instructions to send a picture of the Auvi-Qs with the expiration date and the pharmacy receipt and that they would send me a coupon for $400 per pair to be used between January 2015 and June 2015. Within two weeks I received two $400 coupons toward my next couple of Auvi-Q prescriptions. Just last week I used the first coupon, assuming at $396 the new set would be at no cost to me. I was shocked to learn that the retail price of a set of Auvi-Qs was now $569.99! [Sanofi] covered $400, my insurance covered $120, and my co-pay was $50. I’m not sure if there’s a “game” with the cost of prescription meds when a coupon is being used, but I was quite surprised at the increase in price in only six months. But then again, epinephrine is priceless when it comes to anaphylaxis…

It was Kelly’s last line that got me thinking – how even after appreciating the process for the $400 voucher, and detailing the price increase as observed, there’s acceptance of the cost, whatever it may be, for epinephrine.

Epinephrine is priceless.  We can agree on that point for certain.  You can’t put a price on a life, etc. etc. but going back to the idea of disparate bargaining power, therein lies the imbalance.  Taking it a step further, and to an issue that troubles me, there are those that are prescribed epinephrine and never fill the prescription.  (Source)  The 2013 Medscape article “Anaphylaxis Death Rate Down, but Epinephrine Use Poor” looks at some statistics out of Canada:

Of the 80 deaths recorded in Ontario, Canada from 1986 to 2011, only a quarter involved the administration of epinephrine prior to cardiac arrest, including that by emergency medical personnel, Ya Sophia Xu, MD, from McMaster University in Hamilton, Ontario, reported […]

Of the 80 people who died, 47 had a known or suspected allergy to the fatal allergen, but only 18 had been prescribed an epinephrine autoinjector and only 9 had their autoinjector at the time of the reaction.

Additionally, at least 8 of these people received epinephrine that was either expired or administered incorrectly.

I’d take it an anecdotally based step further and add that there are also those that hesitate to use the injectors they have when every minute is crucial and even those that split up injector two packs to avoid the cost of purchasing a second set.  (See my prior post: When a School Tries to Split Up Epinephrine Auto Injectors).  There are also those that just don’t make the initial purchase at all.

Education regarding recognition of anaphylaxis and use of epinephrine is very important.  Even so, I’ve even had allergists remark that people hesitate to use epinephrine because they don’t want the ER bill that may follow hospitalization secondary to use of the injector.  This of course would be a fallacy where the use of the injector is associated with the hospitalization rather than the allergic emergency, but I know there’s a tendency to convince ourselves a reaction isn’t really happening because we just don’t want to be in that situation.

Dollars and Sense

Operating from the starting point that we should absolutely have and use epinephrine auto-injectors as prescribed and as indicated by circumstances, practice with them, and refill prescriptions when they expire – do we have any voice when it comes to the out of pocket costs imposed by a food allergy diagnosis?

An article from August 2014 delved a little deeper into the money issue and found that the price actually went from $35.59 for an EpiPen in 1986 to $333.00 in 2014.  I paid, with a $100 copay assistance card, $233.86 for the Auvi-Q (with a deficient expiration date), last year.  In the article, “Anaphylactic Sticker Shock” by Terry J. Allen, the focus is on the cost of the EpiPen in the United States versus Canada:

[…] I thought of the nice Canadian pharmacist’s sadness at my having to fork out $94—until I told him how much more EpiPens cost only 10 miles south. “But why?” he asked. Good question, monsieur.

Ms. Allen’s article references a 2012 New York Times article entitled “Tiny Lifesaver for a Growing Worry“.   I went looking and found that the article appeared in the business section of the NYT.  In the piece, Heather Bresch, Mylan’s Chief Executive, refers to just 7 percent of those who need it carry a prescription.  That was a statistic referenced just 3 years ago and seen as not only a market opportunity for Mylan, but for competitors.

(In the interest of disclosure, as I’ve mentioned elsewhere, I did go in April 2014 to Mylan HQ on their dime for a gathering of food allergy advocates.  I found the experience informative.  Mylan and Sanofi were both sponsors of the Food Allergy Bloggers Conference here in Las Vegas in 2013 and 2014 before I stepped down from involvement.)

As a consumer I read the market opportunity as one for competition that would benefit consumers but what if everyone is competing for that 7% (or what have you) of users instead of expanding into untapped groups?  I hesitated to post any of this as Nevada’s legislature is working on expanding stock epinephrine (a measure I wholeheartedly support).  I also, much like the debate I referenced in a recent post, didn’t want to be perceived as harming entities that do take supportive actions of the food allergic community.  Then I thought to myself that the barriers to access presented by expense are a strong reason to continue to support stock epinephrine even though the push for these measures comes from dollars in the coffers of companies paid hundreds of dollars for their devices.

Mulling it Over

As usual, I don’t have a conclusion that satisfies me here.  I turn to research and try to make sense of my own feelings at the same time.  Am I  re-directing anger at my powerlessness every time my 6 year old utters, “Mama, I feel left out” at what should be innocuous childhood interactions?  Am I veering into politics on the subject of business and whether a free market can exist where the big is favored over the small?

I worry that my agitation over the expense of food allergies, whether it is for special food or life saving medication, means I am not grateful that the special food exists or that there are companies willing to provide easy to use auto-injectors and pour staggering amounts of money into marketing them, even assisting with legislative efforts to support stock epinephrine.  I worry that I’m putting a price on my daughter’s life.  Should I gladly pay whatever is necessary for a six to twelve month safety measure?

I have justified paying an already higher cost for the Auvi-Q in the past because I genuinely like it.  My daughter likes it.  I’ve met representatives from both Sanofi US (Auvi) and Mylan (Epi) and they’re just hardworking people like anyone else.  On an individual level, I’m not saying there’s a lack of care.  But I’m also a businessperson, and a glass half empty sort at that.  A narrative is a story but it is also a sales pitch.  If companies are happy to extol the success stories of lives saved by injectable epinephrine, where are the initiatives for access beyond stock epinephrine legislation for limited spaces?  There’s a disconnect as well between the physicians who prescribe medication and the delivery of the medication to the patient.  I always tell physicians what the tests or medications they specify end up costing and they show surprise.  But those doctor’s visits carry a cost in and of themselves, after all, so the joke’s on me.

There’s always the default answers one could turn to, like saying this is the state of medicine in the United States or it is just business.  I think at the end of the day I’m allowed to be frustrated, I’m allowed to vent, and then trot down to the local pharmacy and pay up like everyone else.  I just wish if I’m going to over-pay for a product I knew an actual injector was being put in the hands of someone that couldn’t afford it by virtue of my willingness and ability to pay that increasing price.  (Note: Selena Bluntzer at Amazing and Atopic does detail patient assistance programs that may assist some families in affording Auvi-Qs as well as information about generic epinephrine options that are worthwhile reads.)

The way I feel right now, I want to walk away from our Auvi-Q and go to the most cost-effective option, but the rub is that I have a 6-year-old that doesn’t see her medication as some liquid in a tube or credit card shaped case, she sees a lifeline.  Given that my hope is that each year’s supply passes unused into our medicine cabinet stash of expired auto-injectors, the Auvi or Epi is not so much about the epinephrine inside but instead the symbol of being prepared for what may happen in the wide world.  Even I can feel the difference in the weight of my purse with or without her injectors, and know she’s somewhere else by the absence of it.  I was explaining what “ATM” meant to my daughter on Saturday and how the “auto” prefix also appears in words like “autobiography.”  She interrupted me to offer that it was also in “auto-injector.”  Auto-injectors are a huge part of our daily life and are here to stay.

What Next?

What I want to do is something useful, something concrete. I don’t know what that is yet but I wanted to put this out there for discussion before I talk myself in too many circles.

Now that I’ve railed on for several hundred words my blood pressure is calming and I can see myself refilling our prescription for the Auvi-Q because I don’t feel like I have a choice.  I am suddenly presented with the thought that refill time is an especially sensitive time for food allergy families because it often coincides with an anniversary of a diagnosis.  I remember so vividly getting the call that my daughter’s blood test results were in and I needed to immediately get her an EpiPen.  With that in mind, I want to look back next year at refill time and have accomplished something even for just one other family who may be struggling to afford epinephrine but doesn’t qualify for assistance that may already be out there.

Road trip to Canada, anyone?

Update: 3/23/15 – Check out Danya Glabau’s post – Pricing Health: Skyrocketing Prices for “Drugs for Life” – she eloquently brings her perspective as a social scientist to the pricing issue.

Vegan Allergy Friendly Tom-Kha Soup Recipe

March 071

I first ate Tom-Kha soup in Portland, Oregon in late July/early August of 2006 – my husband’s cousin made the recommendation and for a citrus fan like myself, the flavor was fantastic.  I didn’t remember the name of the soup, though, I knew it had coconut milk and a very distinct lemon flavor.  It wasn’t something I had a chance to have again until my friend took me out to lunch at a local Thai restaurant (Komol – not remotely allergy friendly given the heavy use of nuts in Thai cuisine but a great place if you’re vegan or vegetarian with no allergy concerns).  The lemongrass and coconut mentioned on the menu had me wondering if “Tom-Kha Mushroom Soup” was what I had enjoyed in Oregon — I was right!

Google yielded this veg friendly recipe on a site called “Flip Cookbook” – it has great step by step instructions with photos so do head on over and check it out.  The recipe as written features soy sauce and tofu, so I thought I’d try to simplify things and make the soup top 8 allergy friendly.

March 007

Ingredients

  • 5 cubes of Massel Vegetable Bouillon dissolved in 5 cups of water (I don’t normally suggest things by their brand name but I adore this veggie stock, plus it is gluten free)
  • 1 fresh lemongrass stalk (I found this by the fresh herbs at our grocery store)
  • 1 can of Thai Coconut Milk
  • 4 mushrooms, sliced with stems removed
  • 20 grape tomatoes
  • 1 carrot, peeled and sliced into rounds
  • 1 tablespoon of minced garlic
  • 1 teaspoon of red pepper flakes
  • Fresh lime juice to taste
  • Salt to taste

Directions

  1. Bring five cups of water to a boil on the stove, then add the five bouillon cubes (if you’ve bought a 4 cup carton of vegetable stock you can just use that and add some water).
  2. Follow the directions here for the lemongrass (essentially cut off the end to add to the pot and remove some outer layers before food processing the remainder into a fine mince) and add to the pot, simmer for a few minutes.
  3. Add 1 teaspoon of crushed red pepper, sliced mushroom, garlic, and sliced carrot and continue simmering.  After five minutes, add the tomatoes and continue on medium-high heat.  At this point I covered the pot and reduced the heat a little to try to get the carrots a little more tender but I needn’t have worried.
  4. Add 1 teaspoon of salt at this point or let people salt to taste later.  Same goes for the fresh lime juice, I added some while cooking (juice from 1/2 of a lime) and then added some to the bowl when serving for an extra boost.
  5. Add the contents of the can of coconut milk to the pot and bring back to a simmer, stirring occasionally.  In the colder months the coconut milk will have likely separated so don’t be surprised if some of it is solid at the top and there is coconut water at the bottom.

March 056

Once the soup is heated through, it is ready to serve!  It is surprisingly easy and quick to prepare – a perfect spring soup.

Sunshine Burger Issues Voluntary Recall Notice (Gluten)

I wanted to share this recall notice I received today because we are big fans of Sunshine Burgers at our house and I’ve recommended them here on the blog before.  When I saw the subject line I was worried the recall was related to the recent paprika and cumin contamination cases (read more here).  The contamination is in the form of gluten, not nuts, though it is related to a spice supplier.

Sunshine Burger package (circa 2011)
Sunshine Burger package (circa 2011) – this variety is not affected in the recall

Here’s the full statement:

Effective immediately, we are voluntarily removing from store shelves the following items for a possible allergen contamination as a result of gluten levels higher than 20 parts per million. Affected products include these Sunshine Burgers products and “use by” dates:

  • Organic Sunshine Burger Black Bean South West (SKU# 7 94213 00013 0) with the following USE BY dates: 7/13/2016, 7/21/2016, 7/28/2016, 8/4/2016, 8/11/2016
  • Organic Sunshine Burger Barbecue (SKU # 7 94213 00023 9) with the following USE BY dates: 5/4/2016, 6/11/2016, 8/13/2016
  • Organic Sunshine Burger Loco Chipotle (SKU# 7 94213 03163 9) with the following USE BY date: 8/12/2016

If you purchased a product with one of these SKU codes and dates, you can send us a product label – or photo – for a full refund, or return the product to the grocery store.

During routine testing by an independent laboratory, gluten in excess of 20 parts per million was detected in three of the eight items in the Sunshine Burger product line. No other products were affected. We immediately removed the affected production lots from commerce and initiated additional testing to identify the source of the gluten and take corrective actions. The additional testing of ingredients found the source of the gluten was a spice blend from a third-party organic spice supplier that did not meet our specifications.

Prior to this positive test for gluten, no Sunshine Burger products had tested positive for the presence of this allergen. All Sunshine Burger products are certified organic and verified non-GMO. They are produced in a plant with a strict HACCP program in place. Corrective actions are being implemented to ensure this is not repeated.

We sincerely apologize to consumers for the inconvenience this voluntary recall has caused. Please contact me directly if you have any questions.

Sincerely yours,

Cole Jones
General Manager
info@sunshineburger.com

Source (March 4, 2015).

Water

A mom at my daughter’s school contacted me two weeks ago about her daughter’s upcoming birthday – she wanted to get safe cupcakes for the whole class that were inclusive of allergies as well as vegans and vegetarians.  I responded as I often do, by offering to cover our side of things so she wouldn’t have to worry but she pressed on.  Last week she brought me the brochure of the vegan bakery she’d found and said they’d assured her they could make peanut, tree nut, oat, and sesame free vegan cupcakes.  As most of you may know, letting go of control is not my strong suit, but yesterday when she brought the cupcakes after school I was late.  When I arrived, my daughter was standing there holding a cupcake and waiting patiently, her friend’s mother had told her to stay close and wait until I came and gave the final all clear.   She ate it with gusto, and was on cloud nine.  She always tries to eat the cake first so she saves the frosting for last, I am not so self controlled.

Fast forward to this morning – my mom was visiting briefly from Colorado and I let my daughter miss the morning part of her school day so that we could go grab an allergy friendly breakfast at the South Point and celebrate (belatedly) my nephew’s birthday (he was visiting from California).  At any rate, at breakfast my phone chimed and I saw a message from my daughter’s classmate’s mother – she noticed at lineup that my daughter was missing and was worried about a delayed reaction keeping her out of school.  I messaged back right away that we were playing hooky a little bit and that all was well but I was truly touched by her compassion and kindness.

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On Monday we took advantage of the holiday and met up with a dear friend of mine and her family – their children all have food allergies and their eldest has a particularly severe dairy allergy.  She excitedly showed me some girl scout cookies that were safe for them, and upon investigation they were an option for us as well (apparently different distributors/manufacturers make the cookies across the country so one of them has some allergy friendly options).  My daughter ate her first “scout cookie” and we managed to polish them off.  Jokingly, my friend said we should go find more and it wasn’t long before we loaded the kids in our respective vehicles and drove to the nearest store to see if we could spy any girl scouts.

First: Albertson’s.  We slowed through the parking lot but it was a bust so we moved on to the next store, it was silly and fun and it was all on our way to my daughter’s swim class and my friend’s errand to get new shoes for her youngest.  At Von’s, our second store, my friend said she’d go to Smith’s while we went to swim class and then we could all link up at Chipotle for dinner.  It was spontaneous and still makes me smile to think of it all.  We came up empty handed on the cookie front but that was never really the point.  It’s nice to think that though I’m getting older (I’m having major dread as my birthday approaches), I can still be silly.  Plus, I just want to hug the stuffing out of my friend every time I see her – she makes me feel normal.

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Last week, I was walking to my car after dropping my daughter off at school and a fellow parent stopped to chat with me.  We ended up talking for the better part of an hour about our trials and tribulations and it was oddly reinvigorating.  None of us are truly alone.

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I recently unsubscribed from a bunch of food allergy information sources because I felt like they were feeding my anxiety instead of quelling it.  Some great things do go on, like Kyle Dine’s allergy video Kickstarter or the fundraiser for Dr. Xiu-Min Li’s research, but then there are things like sponsored jokes at the expense of those with allergies, school board members in another state laughing at a remark suggesting shooting children with food allergies, cartoons throwing food allergies into the vaccine maelstrom, and most recently a facebook page that claims that allergies are not real.  I get the frustration, I get the anger, I just also get wistful about the energy and fervor that is expended on bullies when our community faces the looming specter of inadequate access.  Access to epinephrine, access to employment opportunity, access to education, and more for food allergic individuals.

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Did you know that federal disability law in the United States doesn’t just protect the allergic person in question but those associated with them, such as parents and advocates?  Did you know that a court in California opined that threatening the safety of a child with food allergies through institutional policy “approach[es] the limits of what a civilized society will tolerate” in a recent unpublished opinion?  The courts can be maddening a lot of the time, but I find intellectual safe haven in the idea that the “civilized society” is the quiet one.  The village that we forge with friends near and far, and the support networks we may not realize we have.  I find emotional safe haven in the idea that I get these moments and glimmers of the sisterhood (and brotherhood) of compassionate people.

I’m reminded of this quote from Bruce Lee (source) –

http://www.goodreads.com/quotes/29138-be-like-water-making-its-way-through-cracks-do-not

(In case the image is hard to view, here’s the text):

Be like water making its way through cracks. Do not be assertive, but adjust to the object, and you shall find a way around or through it. If nothing within you stays rigid, outward things will disclose themselves.

Empty your mind, be formless. Shapeless, like water. If you put water into a cup, it becomes the cup. You put water into a bottle and it becomes the bottle. You put it in a teapot, it becomes the teapot. Now, water can flow or it can crash. Be water, my friend.

Granted, I think adjusting can be assertive, but I like to think of how water is never just one thing – it can have strength and it can have calm, the tide can lift us all or it can be a destructive agent.  The moments, the conversations, the support we feel from within and without are just as powerful, if not stronger, than the trolling and insensitivity others dish out.

Of course, all of this comes with the caveat that I’m not always even tempered or as kind as I’d like to be.  I hope that I can learn from others and stay true to myself as the years roll on but to throw out one more quote, Henry David Thoreau wrote: “When one man has reduced a fact of the imagination to be a fact to his understanding, I foresee that all men will at length establish their lives on that basis.”  We have to constantly check our assumptions and our imagination before we mistakenly establish our lives on shaky ground.  We have to be open to correction, through a sort of social scientific method, testing and re-testing our hypothesis of living.

I have felt quiet on my blog of late because of that sort of adjustment and re-evaluation.  I think I set out to share the story I began with, the story of the birthday cupcake, and ended up all over the place so maybe I do have a few things left to put out into the ether.

Thanks for reading.

Homemade Vegan and Nut Free Chocolate Oranges

Vegan and Nut Free Chocolate Oranges from OhMahDeehness.Wordpress.Com

You know you’re a food allergy mom when. . . you find yourself re-imagining childhood treats!  Chocolate oranges are a December holiday memory for me and I wanted to share the flavor and fun with my kids.  Longtime readers of this blog will know I get into the chocolate crafting spirit at this time of year and 2014 is no exception. . .

My family moved to the United States from England when I was about three years old but our love of British chocolate endured.  In the store the other day I perused the label of a childhood favourite (see what I did there?) – a chocolate orange from Terry’s – and knew it wasn’t an option for our family because of nut warnings.

I debated getting chocolate molds (amazon affiliate link), orange foil (amazon affiliate link), and orange extract to create these but cooking with food allergies is complicated enough without getting a bunch of extra supplies.  Enter Google!  The very first result when I searched “home made chocolate orange” was a post from February 2013 on a site called “Lilyshop” entitled “How to make a chocolate orange.”  The author used a hollowed-out orange to accomplish her orange shape and the presentation was pretty stunning.  Her ingredients were chocolate, cream, and orange extract – none of which are problematic for our family with our current restrictions (peanut and tree nut free, oat free, vegetarian, and sesame free) but I still strive to go top 8 allergen free whenever I can so I can be the most inclusive.

So!  Yesterday we braved the store (we did venture out over the weekend to go to the Clark County Museum and the Natural History Museum as a family but I wasn’t going to go shopping!) to get items for a holiday packet to send to my brother (December 1 is the recommended final ship date for APO packages if you want them to make it to their intended destination by December 25th).  All I needed were oranges since I had the chocolate and coconut oil I anticipated using to create the recipe (I skipped orange extract because I wasn’t sure what brand would be safe and also wanted it to be easy to make).

Just Three Ingredients!
Just Three Ingredients! (Photo credit: RLW)

The photo above was taken by my son and he helped me make these and is by me as I write this post so he voted it was the best picture.  I convinced him cropping out his foot on the carpet by the bag of chocolate chips would be ideal, though.

Vegan and Nut Free Chocolate Oranges

Supplies

Knife and cutting board

Muffin pan (optional)

Metal saucepan and metal bowl (essentially a make-shift double boiler)

Spatula/scraper

Ingredients

2 medium sized oranges (navel is just fine)

1 teaspoon of orange juice

1 teaspoon of orange zest

1 9 ounce bag of Enjoy Life dark chocolate morsels (other Enjoy Life varieties are fine)

1 teaspoon of coconut oil

Water for your makeshift double boiler

Directions 

Halve one of the oranges and use a small knife to hollow it out.  There are great in-process pictures here so I didn’t try to take pictures with a knife in hand myself.  Do this over a bowl so you catch the juice.  With the second orange, zest it on the bottom hemisphere so you can then halve it and hollow out the top.  You’ll likely have enough chocolate to make 1 1/2 orange peels into chocolate oranges but if you need more zest I’d use the second orange for zesting and any excess chocolate can go into an ice cube tray or other mold for general snacking.

Tip: when I hollowed out the orange halves there was a small hole at the bottom so before you melt the entire bag of chocolate chips, reserve about 10 individual morsels (more if you’re using mini-chips) to fill the hole before adding the melted chocolate mixture.  Set the orange halves in a muffin pan or on something that will keep them stable.

Heat some water (maybe an inch or two, making sure it won’t touch the bowl you set on top) in the saucepan to boiling and reduce the heat to simmer the water.  Set a metal bowl on top of the saucepan and add your chocolate chips (less the 10 you reserved).  Stir with a silicone spatula/scraper and add the orange zest.  Follow with the one teaspoon of coconut oil.  Once the mixture has become liquid, you’re going to add the orange juice very gradually.  The chocolate may start to seize a little so that is why I’d suggest waiting until the very end of melting it.

Once mixed, spoon the chocolate into the hollowed out orange halves and use a knife to level the top.  Put them in the freezer for 10-15 minutes or in the fridge for longer.  You want them to set but not become solid at this point because you’re going to slice them before putting them in the fridge to become solid.

Vegan, Nut Free, Gluten Free Chocolate Orange Slices
Vegan, Nut Free, Soy Free, & Gluten Free Chocolate Orange Slices

If you want to be really fancy, after you quarter the orange halves into slices you can use a toothpick to make some detailing on the side of each slice or you can leave them smooth.

They were delicious right after slicing – easy to bite into – so if you prefer them at that stage be aware that putting them into the fridge again for too long is going to give you a more snappy chocolate instead of a yielding one.  I am thinking if you want them fudge-like you can add coconut cream to your chocolate mixture but I haven’t tested the idea yet.

As presentation goes, this is a lot of fun!  Maybe do a version with mint or make a batch of Cybele Pascal’s top 8 free thin mints to accompany the chocolate oranges for an allergy friendly tea party?

Vegan and Nut Free Chocolate Oranges from OhMahDeehness.Wordpress.Com
Vegan and Nut Free Chocolate Oranges from OhMahDeehness.Wordpress.Com

If you’d like to buy pre-made fancy chocolates, check out Indie Candy (I’ve sampled the top 8 free orange truffles and they are amazing), Premium Chocolatiers, or Vermont Nut Free Chocolates (these do have milk) to start but you can really have fun making treats in your own kitchen so I hope you’ll try!

CSPI Files Sesame Labeling Regulatory Petition

We have 8 planets and 8 top allergens – that’s about to change!  Well, we’re hoping it will change and a fantastic organization called CSPI (the Center for Science in the Public Interest – a Washington, DC based non-profit health advocacy group) has taken a major lead in doing so.  No, Pluto isn’t coming back (at the moment) but CSPI and many other folks would love to see sesame added to FDA labeling requirements for allergens.

Food Label Example from
Food label example from a prior blog post

I’ve discussed labeling legalities on my blog in the past as well as specific examples of labeling woes, but to those that don’t live with a sesame allergy this may not seem like the exciting step it really is.  If we open the door to the “top 8″ notion expanding, what else are we capable of changing?  

Background

My dear friend Jessica Almy is not only the founder and editor at Vegbooks.org, a site focusing on kid movies and literature reviews with a compassionate (vegan and vegetarian) lens,  she is Senior Nutrition Policy Counsel with CSPI.  Jessica is one of those people I say I want to be like when I grow up, she has even changed the way I think about food and I thought I was pretty entrenched after 6 years of being a food allergy mama.  Two of the campaigns she has worked on look at the use of icons that appeal to children to sell junk foods/candy (ex: Hello Kitty on just about everything, How to Train Your Dragon with candy “advergames”).  These are pressing issues – just yesterday my husband e-mailed me this article from the New York Times about the ubiquity of Disney’s Frozen to sell products to children.

In January 2013 Jessica connected me with Janna dePorter, a research associate at CSPI, about CSPI’s work on a petition for the FDA to get sesame labeling going.  I was able to reach out to my own networks so that Janna could speak with other great individuals that wrangle sesame allergies in their life.

cspi

The Petition

I’m used to keeping mum on things but here we are in November and I get to finally share that yesterday CSPI’s petition went up!  Read the press release here, and download the pdf of the actual petition here.

From the petition (internal citations omitted):

The sesame seed (Sesamum indicum) is an oilseed crop and edible seed that is used in many food and consumer products.  It is used in an increasing number of foods and might be listed in the ingredient list under an unfamiliar name, such as benne, benne seed, benniseed, gingelly, gingelly oil, gingelly seeds, gomasio, halvah, seed paste, seed oil, sesamol, sesamolina, sesamum indicum, sim sim, tahini, and teel or til.

This is part of the background research that Janna and others were involved with when they reached out to food allergy families – where and how does sesame, one of the top 10 allergens labeled for in Canada already, hide and endanger an at-risk population?  Sesame also hides under terms like “spices” or “natural flavorings” in food.

My statement in support of the petition is featured on page 13 as pictured below, I’ll also paste it in for easier reading but it gives a better idea of why I think this is such an important step:

Wordy as usual!
Wordy as usual!

September 21, 2014
H. W.
Las Vegas, Nevada
My daughter was diagnosed with multiple food allergies shortly after turning 1. She’d had reactions before the confirmation of her condition but it took time to isolate her triggers. She was initially allergic to peanut, tree nut, oat, sesame, corn, milk, egg, wheat, soy, and grape. This made cooking and shopping a challenge and it still is a challenge even though she did narrow her list after outgrowing a few allergies to peanut, tree nut, oat, and sesame. Having a “mainstream” allergy mixed with a “non-top-8″ allergy makes a life of constant vigilance that much more challenging. You could say “just avoid the allergens” but when companies don’t have to disclose the presence of sesame or use the commonly understood name of sesame, things get tricky. 5+ years into our allergy journey I know how to pick up a product and hunt for the clues that tell me about the presence of something like sesame but even my food allergy mama sleuthing skills can’t see into the mind of a manufacturer that just lists “spices” as an ingredient. “Tahini,” or ground sesame paste, is another nebulous ingredient that I try to work on with my budding reader but which inhibits the ability of others to assist in keeping her safe. Which is to say that I may know that tahini equals sesame but a teacher or other parent may not know that. It really boils down to disclosure for our family – sesame is a fairly major allergen not being labeled for. No one is asking companies to stop using sesame in their products, just to let the consumer know that it is there. The precedent set by adding to labeling requirements will open the door for more transparency and safety for consumers in the United States. How do I teach my child to be responsible about her allergies if companies that make food products aren’t required to tell her the ingredients of their “spices” or that tahini lurks within. I distinctly remember buying tomato sauce and seeing that one variety had sesame. I was shocked and wondered if the absence of sesame on the other brands’ labels meant it was present and they didn’t feel obligated to tell anyone. The broader issue is not whether I’m going to walk out of the store with tomato sauce, it is that if we’re consenting to have food production so removed from the end user, we should be heard when we ask for assistance knowing whether we can safely provide a food product to our families.

What can you do?

Be sure to share the press release with others to raise awareness of non top 8 allergens.  You can even share your own story of dealing with sesame or another allergen that isn’t mandated for labeling.  More disclosure benefits all of us and may put companies on notice that they should take a step further than what is legally mandated already by FALCPA.

My daughter is reading labels as her reading skills improve, it is exciting and scary for me at the same time because she believes the things she reads (this goes back to the other work CSPI does about children and marketing) and relies on them.  She does know that the next step is calling the company or emailing them to find out about other allergens and manufacturing practices and that will still be our norm, but maybe things can change.

Keep sharing also your own stories about living with food allergies with people in your community.  Just as there are “teaching moments” when you spend time with a child, there are teachable moments in everyday conversation with others.  We may each only be one person but you never know how far a message can spread!

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Edited to add: Here’s a link to Brian Heller’s Change.org petition CSPI’s filing references, if you’d like to show support that way!

Write a Card for Each Day in November #NaNoCaMo

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Quote: “Purpose is the reason you journey. Passion is the fire that lights the way.” – Author Unknown

In January, fellow VegBooks reviewer and all around awesome gal, Kristin Wald from her blog at mutterschwester.wordpress.com, wrote about the 200th anniversary of Pride & Prejudice (Jane Austen’s brilliant work) and opined about real letters, not just thank you notes and birthday cards, but a handwritten missive:

An actual “catching up” or “I have wanted to tell you” letter. And, if it’s your style, add something quirky or fun or surprising to the letter.  Make it your very own craft project. Maybe you’ll even need to buy some crayons. Or cut up a magazine for color.

– from “Pride and Prejudice: Celebrates Its 200th Anniversary on Paper.”

I loved the idea but I do tend to write letters in cards as well as in folded sheets (upon sheets).  I wrote letters and notes and cards but nothing I had the presence of mind to share with Kristin as she asked in her post.  Still, it is funny that her request that we write real letters to one another came in connection with a post about Pride and Prejudice because that (and Jane Austen’s Persuasion) contain my favorite letters in all literature.

Birthday Card
Quote: “It is the sweet, simple things of life which are the real ones after all” – Laura Ingalls Wilder

Last year my friend Mindy moved very far away to the Dakotas and it reminded me of another author who lived in the Dakota territory, Laura Ingalls Wilder.  I told my friend that I wanted to exchange handwritten letters after she moved.  Yes, we both had email and our respective blogs to follow and comment on, but she was going to live a pioneer life so letters were a must.  When I get her letters, I will sometimes wait a few hours before I open them so I can savor them.  There’s just something special about that.

Birthday Card
Birthday Card

Fast forward to recently, I received some wonderful letters and cards in the mail, including from my friend Annelies Zijderveld(her blog is The Food Poet and she has a cookbook coming out in April 2015!) – who unsuspectingly asked for my address and sent a cheery orange card my way.  I responded in kind with a handwritten card.  Annelies then suggested on Facebook that instead of “NaNoWriMo” (National Novel Writing Month or National November Writing Month, not sure which is the accepted version) we should do “NaNoCaMo” (National November Card Month) and “send a card everyday in November to someone in your Facebook friends list[…].”

(Redacted) Envelopes
(Redacted) Envelopes

I’ve sent four cards so far and will be aiming for 30 total.  For about the cost of a stamp you can make someone smile, so why not?  You could write a note of thanks, a birthday card, a letter, encouragement, you name it.  Here are my first four – I love doing matching envelope doodles so I included those as well.  As it is still early November, there’s still time to message your friends and find out their addresses.  Considering there’s no mail on some days, you won’t be sending a card every day, but it is more fun to space them out through the month, even if you’re not following a rigid schedule.

"Happy Healing Vibes Are Being Sent Your Way" (Interior: Unless You'd Prefer a Happy Healing Hot Fudge Sundae Instead..."
“Happy Healing Vibes Are Being Sent Your Way” (Interior: “Unless You’d Prefer a Happy Healing Hot Fudge Sundae Instead…”

Thank you, Annelies, for the idea!  Anyone else joining in?

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Speaking of VegBooks, here are the latest posts I’ve contributed to. . .

Letters of the West

Tracks Count

Best Books for 5 Year Old Vegetarian and Vegan Kids