I Understand

One phrase has the power to diffuse situations, to make people feel heard, to recognize in them a hurt even though there may be nothing you can do to help.

“I understand.”

Ever since we launched the Allergy Law Project, there have been messages, emails, and phone calls from people who are struggling to forge their way in advocacy for themselves and those they care about.  A common thread seems to be that they want the dangers of exposure to allergens recognized.  Sometimes the desire comes from a place of fear – sometimes from a place of experience – and sometimes from a mixture of both.

As we head into Food Allergy Awareness Week in the United States on the tail end of both Teacher Appreciation Week and Nurse Appreciation Week, it makes me think of how much it has meant to me that the other people in my children’s lives like nurses and teachers understand the preciousness of their charges.  Teachers stay up late preparing lesson plans, grade papers on weekends, and support students in extracurricular activities when they probably could use a break instead.  School nurses manage medications, histories, and have to know students well enough to tell the difference between the flu and just having a bad day.

My mother is a nurse.  My sister in law and mother in law are teachers.  I may never have walked in their shoes but I can say to them that I understand the challenges caring brings.

I am able to tell clients that I understand the feelings of frustration that accompany the discovery of false friends, of soured deals, and broken promises.  Knowing how nervous I am watching my child eat a new food, or what its like to tell her she can’t have some amazing looking treat just like her peers, my first reaction is one of support when another  parent confides in me about their own trials.  Maybe they’re worried their child isn’t as tall as the other kids, or that their ADHD gets them into trouble, or any of the other worries we have for those we love.

Sometimes the tables turn and someone understands where I’m coming from and I’m reminded of how important compassion is.

On Sunday I got out on the bike again after a much too long hiatus.  I couldn’t keep up well enough with the group so I rode a ways back.  But I didn’t ride alone, because someone was willing to ride at my pace and keep me company.  When I turned around so as to not overdo my mileage, he volunteered to ride back with me.  We had a lovely chat and the 180 mile per week rider told me he understood getting into training all over again.  I was beaming, though sore, after the ride – how kind he had been!  He made me forget how ashamed I was about all the weight I’ve put on and about the way my fitness has diminished to nonexistence.  I promised him I’d come out and ride again and again until my goal race in October.

On another day, one of our librarians at our favorite local library pulled me aside and asked where I get all my cute dresses.  She didn’t know I’d been wearing dresses more and more because not much else fits, she didn’t see the “me” that I see in the mirror and it reminded me that we have to get out of our own heads once in a while and see ourselves as others do (unless they don’t have nice things to say, in that case ignore those people of course – I’m no stranger to cutting off contact with toxic relationships!).

Then a friend told me yesterday about a tradition in her home country of Japan for mother’s day – it is not a commercial holiday, but instead red carnations are given to mothers as tokens.  White carnations, however, are given to those who have lost their mother so that they might be remembered too.  How wonderful to both celebrate and remember at the same time.  I think the same should be true for something like Food Allergy Awareness – we can look at how far we’ve come in the food options we have, the awareness, the advocacy…but we also can’t forget the lives lost to anaphylaxis.

The long and short of it is that even when you don’t know what to say, just let someone know you hear them and hope things get better.  Life is too precious, depression is too invisible, and self care too absent from frantic days.  So my hope for all of you is that you feel heard, that you feel understood, and that you can channel the kindness you receive from others back into your community.

Just to prove how much I mean all this, here’s the very last picture I took with my camera before it was stolen last week.  It’s one of the Teal Aprons my mother in law made to help me thank allergy cookbook authors that have helped us make safe food for E.  If it feels like an odd juxtaposition, it is, because life is just like that.  Take the good with the bad and keep on swimming.

IMG_4974Happy Nurse’s/Teacher’s/Food Allergy/Mother’s Week/Day!

 

Blogging and Defamation in Nevada

Yesterday I gave a short statement to the Nevada Assembly Judiciary Committee regarding a bill making its way through the legislature, Senate Bill 444.  Before I include it here, I wanted to give some background information that I think would be useful to fellow bloggers.

Defamation

Generally, defamation is a term used to include publication of spoken (spoken) or written (libel) words that are false.  So, in theory, if you wrote something false about someone on your blog, they might have a cause of action in court against you for defamation.  There are specific rules beyond that but as a rule of thumb, as a blogger, you want to be writing things that are truthful (and, given FTC rules, not likely to cause confusion).  Easy enough, right?

Strategic Lawsuit Against Public Participation

There is a lot of nuance to a successful defamation claim, but I always caution people that just because you’re in the right at the end of the day, it doesn’t mean someone can’t drag you into court.  Because of the risk of plaintiffs with deep pockets (able to pay legal fees, etc. even though they may not actually have a chance at winning) filing suits (or threatening them) just to get content they don’t like removed, some states have made laws to protect against them.  These laws are called anti-SLAPP laws.

In Nevada, there has been a form of an anti-SLAPP law on the books since the late 1990s but in 2013 the law was made stronger.  Among other things, a defendant in a defamation suit can file an anti-SLAPP motion within 60 days of being served with a defamation complaint and challenge the plaintiff to show their case is legitimate.  This is a pretty neat framework because in Nevada if you wanted to write a review about a restaurant that hadn’t accommodated your allergies safely or perhaps refused service because of allergies, the restaurant would need to think twice before trying to make you remove the review or suing you.  If they did sue, you’d be able to have a remedy for having to hire an attorney to help you (if the anti-SLAPP motion was successful).

Nevada Senate Bill 444

The bill currently before the Assembly in Nevada would shorten the time a defendant has to bring an anti-SLAPP suit and also limit the types of speech protected.  It would also change the penalty framework that has been in place since 2013.  I read the following yesterday before the Assembly Judiciary Committee and I think it highlights how the food allergy community is impacted when it comes to being willing to share stories and concerns online.  The unique thing these days is that where you might have told a few friends about an experience in the past, now when you share information online it is going to make its way back to the company you’re talking about and they might not be happy.

As an example, a blogger who goes by the moniker “Gluten Dude” recently wrote a post about Udi’s Bread (a gluten free bread on which many with celiac disease and food allergies rely).  He used photos of bread that people have purchased that have holes in them and wrote about trying to reach out to the company about what people are reporting to him.  Like many bloggers, he is using the reach of his readership to magnify a message and get the attention of a large company.  This is the kind of grassroots coverage of an issue that bloggers try to offer that contributes positively to the community at large.

Looking further at the connection between free speech and online content, we have sites like AllergyEats and apps like YoDish specifically catering to the food allergy community.  They encourage honest feedback about dining experiences, so we know there’s an interest in getting good information.  And then there are mainstream review sites like Yelp that can make or break a reputation.

Remember, through all of this, that there is always a party to a lawsuit more prepared for the road ahead.  I recall in a mediation course in law school that this comes up even in the divorce context because one person has already come to terms with a decision even as the other may still be reeling and that changes the balance for negotiation.  In Nevada a plaintiff has two years to sue, but the defendant may not even be aware the suit is coming.  At any rate, all things to keep in mind when considering whether a potentially unjustified defamation suit is going to have a chilling effect on blogging, reviews, and even comments on facebook.

This is also relevant for journalists, as you can see in the picture below John L. Smith from the Las Vegas Review Journal offering his testimony against the bill.

In Las Vegas, NV on April 24, 2015
In Las Vegas, NV on April 24, 2015

I have been in the little teleconference room once before regarding a guardianship bill (you can read more about that here) – you can see to the left the committee members in Carson City.  Another time I offered testimony was when an interim committee was sitting in Las Vegas and I was in the audience for a similar interim committee in town last year.  I have to credit the stock epinephrine legislative process with giving me the courage to take on opportunities to offer my two cents in the legislative process.  Thank you, Caroline for the encouragement on all things legislative!  At any rate, here are my notes going into my testimony:

My Prepared Remarks

Good morning to the Chair and members of the committee.  My name is Homa Woodrum and I’m an attorney in Las Vegas.  I’ve lived in Nevada for 15 years in both Las Vegas, and (a point of pride having lived both north and south) in Winnemucca.  

Though my practice largely focuses on elder law and guardianship, I am also a food allergy blogger and co-founder of the Allergy Law Project – a blog with a focus on disability rights related to individuals with food allergies.  I mention this because the intersection of being an attorney and being a part of an online community results in contacts who reach out to me when they receive requests to remove content on personal blogs.  These individuals wonder about their rights but may opt to take down information rather than wrangle threatened, just threatened,  legal action.  

Other individuals contact me after anaphylactic reactions wondering what they can and can’t say about their experiences out of a desire to keep others in the specific food allergy community safe.  A mother whose son was served real milk instead of soy milk, a college student served his allergen by a barista, a visitor to Las Vegas for a convention served nuts and left to administer his own epinephrine by hotel staff…every single one of these individuals opted not to share their stories because of the commonly held notion that you can’t speak out about companies with big pockets without risking suit.  With SB 444 as written, I would have to advise them all that the risks are too high.

A suit can still be filed and the expense of a defense incurred even if you’ll ultimately prevail.  I am here to add my voice because I think this is an access to justice issue.  I imagine some attorneys would see SB444 as job security, but I for one would rather see continued protective measures available to those who would be crushed by the expense of defending litigation.

A plaintiff always has a choice and can do a cost-benefit analysis before initiating suit.  NRS 41.670 is, I submit, a necessity in the digital era.  As a Nevadan, and attorney, and, though I bristle at the term, a “mommy blogger,” I thank you for your time and urge you to reject SB444.

Final Thoughts

Have you ever decided not to write about something because you didn’t want to face someone else’s reaction?  Have you been asked to pull a blog post, or edit it, by someone else?

Remember, of course, that what I’ve discussed here is related to work that is original to you – if you’ve used a photo without credit or have copied and pasted someone else’s work, you’re treading into copyright issues (also, just don’t do that sort of thing!).  A request to remove content may be related to that content having been stolen but a truthful review of a product or experience may, depending on your state (Washington, for example, has anti-SLAPP laws on the books), have a little more protection than you thought before.

Hopefully Nevada can keep its reputation for strong anti-SLAPP protection!

The Teal Apron Awards

tealapronawards

I had this idea for Food Allergy Awareness Week (coming in May) but both of the people I wanted to honor have birthdays between now and then so in the spirit of not being able to wait on gifts one apron is already on its way and the other will be heading out in the mail in a week or two!

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Much like when I first began navigating food allergy friendly cooking and baking, the Teal Apron Awards are a joint effort between my mother in law and myself.  I’ve made this apron pattern myself before for a bridal shower gift but this time around I selected the fabric combination and my mother in law did the sewing.

It wasn’t until I had gotten to know some of my favorite allergy friendly cookbook authors that I learned the amount of time and expense that goes into recipe creation and cookbook writing.  We may complain about the expense of allergy friendly ingredients but these ladies buy those ingredients many times over as they test and re-test their recipes and tips.  It is part of what makes me trust it will be worth it if I have to go find a suggested ingredient.

That said, I’d like to honor the contributions of Cybele Pascal and Colette Martin to food allergy kitchens everywhere.  I know an apron is not much in the grand scheme of things but most of all I wanted to say “thank you.”

Cybele (www.cybelepascal.com) – I still remember the day you commented on my fledgling blog, I forwarded the email notification to more than one member of my family.  There were weekly recipe link ups and you visited all the contributors’ sites to offer them encouragement.  One of your recipes that became a staple in our home is from your first cookbook, vegan stuffed cabbages.  When you signed my cookbooks you were glad the pages were stained and crinkled because they had been used – they’re even more worn today!

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Colette (www.learningtoeatallergyfree.com) – thank you for not only answering my questions but the questions of those I send your way.  Even when people are just adapting a recipe in general I know I can tell them to reach out to you and you’ll brainstorm with them until they figure out how to adapt their recipes for their needs.  I love that you wrote a book focusing on food staples, fully understanding how non-top 8 allergens impact cooking for so many.  And getting to see Donny and Marie with you last year was a blast!

Through the magic that is the internet I am so proud to call both of these women my friends.  They are incredible human beings and inspirations as business women and mothers.  Happy April birthday, Cybele, and happy May birthday to Colette.  I hope you both enjoy your aprons!

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Food Find: Tree Hugger All Natural (Vegan, Gluten Free, and Nut Free) Bubble Gum

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I was at Sprouts (formerly Sunflower Farmer’s Market) the other day and spied a new (to me) label calling to me with its promises of being nut free and allergy friendly.  Tree Hugger All Natural Bubble Gum checked out ingredient-wise for our family and I’m happy to report it also passed some thorough taste testing by my 4 1/2 and 6 1/2 year old kids.

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Each flavor is unique and matches its naturally colored exterior quite well, though I couldn’t really tell you the difference between “tangerine” and “orange” but you’ll have fun trying to find one.

At $3 a bag direct from the company (amazon affiliate link – currently a higher per bag price), I’d say the price is reasonable compared to other specialty food allergy items and we’d definitely buy it again.  There is a warning about a possible shared facility with soy, so exercise caution and contact the company if you have questions or concerns in that regard.

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INGREDIENTS: Cane Sugar, Glucose, Gum Base (Contains Natural Chicle), Brown Rice Syrup, Gum Arabic, Natural Flavors (including Lemon ,Grapefruit, Watermelon, Pomegranate ), Sun Flower Lecithin, Natural Colors, (Including: Red Beet, Berry Extract, Paprika Extract, beta Carotene, Chlorophyllin) , Carnauba Wax.

The variety we tried was “Citrus Berry Mix” and 2 pieces comes in at 10 calories.  The colors, flavors, and texture remind me of gum ball machines when I was a kid – something my kiddos don’t get to experience because of cross contamination risk (and lack of labeling).  I’m going to be on the lookout for a gumball machine bank for my office.  I think it might be a fun feature especially for clients bringing kids along to meetings.

Hopefully this variety of gum is a safe option!

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Speaking of reviews, my latest at VegBooks.org are as follows:

Gordy and the Magic Diet (great pick for food allergy families)
Planet Kindergarten (a fantastic book)
Cinderella (2015 Live-Action Film)
Letters of the West: An ABC Book
A Penguin Named Patience: A Hurricane Katrina Rescue Story
Tracks Count: A Guide to Counting Animal Prints

Nevada Legislative Session 2015 – Making Your Voice Heard

It has been an interesting legislative session here in Nevada – every other year lawmakers get to their lawmaking and epinephrine is back on for discussion again!  (Posts about stock epinephrine in Nevada schools from last session are here, here, and here.)  The year between sessions is not without activity, as last April the subject of stock epinephrine was expanded upon and has progressed now to Assembly Bill 158.  We must not rest on our laurels as the resistance to AB158 feels greater than the initial stock epinephrine push (in my totally unscientific opinion).

Nevada Assembly Bill 158

The bill applies to:

“any public or private entity where allergens capable of causing anaphylaxis may be present on the premises of the entity or in connection with activities conducted by the entity. Such an entity may include, without limitation, a restaurant, recreation program, sports league, amusement park, stadium or arena. The term does not include a public or private school.”

Schools that are public and private aren’t included because of provisions for them elsewhere.  Just reading that passage gives me goosebumps because my pessimistic mind goes straight to thinking of people experiencing anaphylaxis in a restaurant or while playing sports after school.  And then I think of the lives that may be saved.  I think about vacationers in Las Vegas going out to eat and maybe leaving their epinephrine in their hotel room, something I tend to do when my routine is disrupted on vacations elsewhere, actually.

A lot of bases are covered in the bill – who may prescribe the epinephrine, protection from liability for those using the epinephrine in an allergic emergency, and more.

Submit a Comment (Nevada Residents Only, Please)

As you can see below, some folks have confused their bill numbers in making online comments as you can see by this remark “against” the bill that references the state retirement program (“PERS”):

PERS comment on the epinephrine legislation page

I am hoping the 20+ others in the graphic above are just confused, but wouldn’t it be great to have 20 “for” supporters for every “against” listed above?  The downside is the site won’t let me link you directly to the page for voicing support so I’ve got some screenshots to help you along so it is an easy process.

First!  Go to http://www.leg.state.nv.us/AppCF/Opinion/78th2015/vwComments.cfm or use this handy short link: http://goo.gl/dRezms and click “Submit an Opinion.”

howtocommentonanevadalegislativebill1

Now, select AB158 from the drop-down menu like so…

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And the summary of the bill will pop up – helping you make sure you’re offering commentary (or not, it is optional to write a comment) on the right bill (yes, that was a gentle jab at the PERS commenter above).  However, you’ll see that you need to select the variant of the bill you’re supporting.  Today, April 17th, an amended version was posted (viewable here) and it impacts provisions not only in the original bill but in last session’s school stock epinephrine bill.  Be sure to fill out the Constituent Information before submitting so they know you’re a, well, constituent.

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This bill has not been on my radar as much as it might have been had there not also been two guardianship bills winding their way around, (guardianship is a main area of my law practice).  I mention the guardianship bills because my involvement in the process for both has shown me just what a dream team Senator Debbie Smith had in her camp last time around, including Senator Smith herself.  Everyone was poised, on point, and respectful of legislators’ time during the whole process.  In contrast, I was boo-ed when I made my statement to a legislative committee about AB325 the other day (right about at the part in my talk around paragraph 3).

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Senator Smith speaking before a committee in April 2014

 

Senator Smith recently returned after a February 3, 2015 operable brain tumor diagnosis (read more on Grateful Foodie) and subsequent surgery and I think a great “welcome back” gift we could offer such a champion for individuals with food allergies would be support for AB158.

If you have submitted your vote of support for AB158, be sure to comment below.  Thank you for your help and thank you also to the team of food allergy advocates in both Northern and Southern Nevada for your continued hard work!

 

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.