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

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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.

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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.

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

The Court of Public Opinion

It goes without saying that we understand there are multiple sides to a given story that 140 characters or bold headlines can’t possibly encapsulate.  Hopefully we’re all discounting lead-ins and click-bait but even when you don’t read on or click through, exposure to information in brief can wedge into our minds and impact our perception.  Put another way, reading case law in a given area makes King Solomon’s child custody dilemma of old seem quaint.  Over at the Allergy Law Project, Laurel, Mary, and I have talked about speaking softly but also knowing your rights and standing firm while on this blog I’ve pontificated about issues with legalities in labeling and personal responsibility.

When I watch old movies with my mother she’ll cringe at inaccurate depictions of Germans (sorry mom, I still love Bedknobs and Broomsticks!) and I change the channel for most legal dramas (no one would really want to watch a show about what most attorneys do all day!). . .so watching the fallout from the recent #AAAAI LEAP study announcement has me empathizing with friends in scientific fields.  The furor has not left us “law talkers” (yes, a Simpson‘s reference) without reasons to want to chime in about issues like disclosure and liability.  And yet, I’ve refrained because I genuinely am out of my element except that the scientific method and peer review are things I esteem so I will keep reading about food allergy research even though I roll my eyes at proclamations about “cures.”  Still, when a friend forwards some article my way I feel appreciated because it got them thinking about food allergies or capacity or whatever is the topic at hand.

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Aside from feeling prone to parentheticals this beautiful spring-like Las Vegas morning, I did set out to talk a bit further about why it is important to take much of what you read with a grain of salt.  The “TL;DR” version is that there’s always more to the story.

For example, when a suit against PF Chang’s was recently filed regarding discriminatory pricing for gluten-free versus standard menu items, my knee jerk reaction was to think of how class actions tend to benefit attorneys most of all.  Trying to find the original complaint in the case was not simply a matter of using Google so once it was located the work of combing through the allegations began.  Even so, there has been discussion on the Allergy Law Project facebook page about the resulting piece covering the lawsuit about the risks of taking on a company that is actually trying to serve food allergic individuals safely.  Even I had trouble articulating why it is not okay to tell food allergic individuals to not eat somewhere if they don’t like a policy until I read Mary Vargas’ remark – “If the choice is whether to experience discrimination or not, that would seem a false choice [,] wouldn’t it?”

Debating whether or not there is something I could have done differently so that my daughter wouldn’t have food allergies is not going to get me anywhere, but railing against study approaches is equally unfruitful.  If suing a company with allegations of discrimination results in the ire of a community, what chilling effect is there on rights advocacy, or even in other fields, research, with that negativity?  I’m no Pollyanna, pessimism and worst case scenarios are the name of the game for me, but there’s a difference between being realistic and being in a constant state of attack.

Going back to Mary’s point, it is a false choice to say to a family they can keep their child home if they’re worried about safety (“just homeschool” is the refrain).  It was a false choice when I was in middle school and my parents had to leave me to be bullied by students and staff or keep me home in 7th and 8th grade.  The other remark seems to be that my child needs to “get used to” discrimination.  I’ll teach my child well enough about the cruelness of the world without someone turning basic social situations into minefields, thankyouverymuch.

I’ve written often about how lucky our family is to have the support of those that care about inclusion but sometimes it means biting your tongue.  Sometimes it means not fighting the small battle because of the larger one.  We’ve been refused service at a restaurant because of food allergies and walked away only to find a much better option to save the evening (thank you, random balloon twister at Macayo’s!). And sometimes it means calling a restaurant to task who is doing great most of the time but who makes a misstep in their approach.  Read a snippet of the argument in PF Chang’s response to the suit where they claim celiac disease isn’t a disability:

“Counsel for P.F. Chang’s has not found a single case where a court has held that celiac disease qualifies as a legal disability within the meaning of the Unruh Act, the DPA, or the ADA. There is no basis for this Court to blaze that trail here. Under any reasonable interpretation of these acts, a person cannot be considered “disabled” just because he or she cannot eat certain foods containing gluten.”

(Source: Motion to Dismiss, see page 6).  To add our grain of salt here, of course the attorneys for PF Chang’s are making the arguments they can.  I’m not faulting them for that.  But it does mean that there would be some that argue that suing them in the first place pushes them to make claim about disability.  I don’t know how the case will turn out, nothing is without nuance and there are a lot of procedural arguments in the motion that could carry the day depending on how the court views matters.  Another way to look at the corner PF Chang’s is in:  Just as the attorneys for the restaurant ignore the case by case analysis mandated by the Americans With Disability Act for disability determination by summarily stating there are no cases that hold celiac disease to be a disability – a case about a dollar surcharge may end up opening different doors than anticipated.

I had the privilege of doing some consults yesterday with seven very different individuals (thank you to my mother in law for watching the kids!) and though I know I’m a rambler by nature, fifteen minutes apiece as mandated by the Ask-A-Lawyer program was not remotely enough to get a real feel for each person’s case, let alone give them the advice I would like to.  Fifteen minutes isn’t enough, one news article isn’t enough either.  One headline.  One meme.  One piece of he-said-she-said.  It can be something that discourages us or something that emboldens us to seek deeper into issues that polarize us.  Get uncomfortable, try to see the other side(s).

I get calls from time to time, though I mainly practice elder law, from adults that have experienced anaphylaxis while eating out.  People of all ages and walks of life tell me they do not want to get anyone in trouble, that they don’t want to harm their ability to eat out in the future, that they don’t want everyone else to think they’re after money when what they really want is an apology.  A college student served a coffee drink containing milk, a man that begged staff at a hotel to call 9-1-1 while he fumbled for his epinephrine after being assured a dessert was nut free, a mom given real milk for her toddler instead of soy milk as requested. . .every one of them spoke to me of businesses that demanded to know what damages they wanted.  “I don’t want money,” one of them said, he just wanted to know his daughter won’t by left lying on the floor like he was.

So even if you read about a lawsuit about a death, or a surcharge, or what have you, consider that litigation is the arena our American system gives us to redress grievances, consider that many of the rights that are protected now are often the result of someone willing to weather the storm in the court of public opinion.  I want to leave you with the story of Jenny Hatch shared with me yesterday.  It moved me and I hope it moves you too:

Thanks for reading!

300th Post – Reader Appreciation Giveaway

This giveaway is sponsored by me, I thought it would be fun to celebrate my 300th blog post by choosing some of my favorite things to share.  The best part is that I don’t just have one set of what is pictured, I have put together two!  One for the winner to keep and one for them to choose to give to someone else (or have me ship to someone else).

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What’s included in each package?

  1. 1 Tops Docket Gold Notepad – I adore these for list making
  2. 1 Smareco Notebook – you can use an app with it but the paper it uses is lovely and has an almost French-style horizontal rule to help with penmanship
  3. 1 IKEA chocolate/candy mold – Las Vegas is getting an IKEA in the near future but I do pop over to the one in Arizona when we are over there
  4. 2 bags of Enjoy Life Dark Chocolate Morsels – top 8, sesame, and oat free, among other things
  5. 2 jars of No Sugar Added SunButter – be aware they do roast the seeds on shared equipment with Soy
  6. 1 Bicycle charm – just a shout out to bikes
  7. 1 square of Vintage Sandylion Fuzzy Stickers – I’ve been collecting fuzzy stickers since 3rd grade, these are little forest animals (awww. . .)
  8. 1 Pentel Ener-gel Pen – I personally prefer super duper fine point pens (think .38mm tips) but most people don’t so I chose a nice smooth gel pen with a slightly larger nib
  9. 1 pack of 3 Eccolo notebooks
  10. 2 Lego black curved plates – when you put them together they make a heart, great for homemade friendship necklaces
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Thank you for reading these 4+ years!

To enter, just leave one comment and let me know what posts you like to see here (reviews? recipes? advocacy?) or just tell me who you’d choose to have me ship the second set of goodies out to.

Also, because I’m running this giveaway, it is open not only to US residents but internationally (except where it may be prohibited, I’m not going to be able to sit down and check every jurisdiction so the honor system applies).  The cut off for comments as entries is  March 15, 2015 at 12PM Pacific Standard Time.  One entry per person, please.  I’ll assign numbers to each entry in the order of their comment submission and use a random number generator to pick the winner.  They’ll be contacted via the email they provided and if they don’t respond within 48 hours I’ll pick a new winner with the same time rule.  The winner gets to pick another person to receive the same package.

3/15/15 – The giveaway has ended, the random number generator picked comment 9 and I’m awaiting a reply within 48 hours from the winner.

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.

The Allergy Law Project

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I’m excited to share something that has been in the works since mid-2014 – the Allergy Law Project!  Countless e-mails and a number of telephone conference calls between Laurel Francoeur, Mary Vargas, and myself have brought us to the point where I can share the site with readers here.  Laurel had the idea to make a resource for folks navigating the intersection of law and allergy (celiac fits in with a lot of the framework too of course) in the United States.  Laurel is an author, attorney, and advocate and Mary is an attorney that focuses on disability rights.  We all understand one another’s schedules and are trying not to get too excited by the already positive reception the site is receiving in the community but it certainly feels like being in a study group back in law school.  Our ideas spark other ideas and before we know it we’re miles away from our initial topic of discussion.  Needless to say, I’m learning so much from them both of them as the least experienced of the trio.

Our first collaborative piece was born out of an idea I had to cover some basic terms – we’ll switch back and forth between “101” style topics and more detailed resources that may end up being useful to other attorneys like case histories and references.  The post is called “Terms of Art in Disability Law & Food Allergy” and while it may not contain new information for some, I know that there was a time when I had no idea what a 504 plan was.  There’s much more in the works, some of it in my inbox as I type this actually.

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Most of all, I feel incredibly privileged that my day job is something that can be one of service and even compassion.  Lawyers can have a bad reputation but law is both a sword and a shield – we can be frustrated with the system but understanding the way things are can give us tools to change them.

The resource is free (I was able to piggyback the hosting into a framework I already had and the $15 domain registration fee was really the only specific start up cost) because our time is donated which also keeps matters independent.  Below I’ve linked to the posts I’ve done here that touch on legal-type issues but you’ll see that our first post on the Project is not an advocacy piece as much as an informational one by comparison to what I post in this space.  With all of that comes the disclaimer that the Project isn’t about specifically advising anyone, it is about serving the idea of inclusion and safety.

CSPI Files Sesame Labeling Regulatory Petition

FTC Dot Com Disclosures and Food Allergy Blogging

When a School Tries to Split Up Epinephrine Auto-Injectors

Food Allergies and Travel in Recent News

Amtrak’s Unaccompanied Minor Policy Explicitly Excludes Food Allergic Youth (this post is what lead me to getting to know Mary!)

UPDATE: Suit Filed Against Amtrak re: Unaccompanied Minor Policy’s Exclusion of Food Allergic Youth

Amtrak Quietly Changes Their Unaccompanied Minor Policy

Ingredient Disclosures for Prescription Medications (or: A Worthy Cause)

A Brief in (Semi) Brief – Understanding the Amicus Brief of FARE and COPAA in T.F. vs. Fox Chapel Area School District

The Stories We Tell (or: Legalities in Labeling)

Stock Epinephrine in Schools in Nevada and Onward to Restaurants and More

“An Emerging Epidemic: Food Allergies in America” and NV SB 453

My Prepared Statement About Stock Epinephrine

As is probably apparent from my own forays, I’d love to do research on travel, labeling, and of course epinephrine access issues in addition to the obvious discrimination issues that come up.  We’ve even been discussing food allergy and prison populations behind the scenes so there’s no shortage of content.  In a way, these are things a lot of us research and take notes on, we’re just taking an extra step to make that effort into a service for others.  Thank you to Laurel for inviting me to be a part of this and letting me play webmaster/designer for the site to boot.  Which reminds me, I need to run accessibility tests on the site and get it prepared so that more people can access it (such as those that are blind).

I always say that most things I do bring me back to my webdesign roots and this is no exception.  I had fun tinkering with the logo idea as well and got invaluable feedback from my dear friend from all the way back when I was a student at Wasilla High School – Chris Swasey.  I also received early encouragement in this arena from Sharon Wong (who introduced me to Mary, actually!), Lisa Musician, Karen P., and Caroline Moassessi.

You can subscribe to the RSS feed for the site, follow on facebook or twitter, or if you comment here with topics you’d be keen on reading about I can certainly log those.  Comments on the site itself are closed.