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

What follows is a press release from Stein Vargas – I am so very privileged to be able to share this with all of you!  You can make a difference!  (See my prior post for more: Amtrak’s Unaccompanied Minor Policy Explicitly Excludes Food Allergic Youth and download the press release here).

Press Release

Press Release

PRESS RELEASE – 10/16/14

CONTACT: Mary Vargas, Stein & Vargas, LLP | 240-793-3185 | Mary.Vargas@steinvargas.com

Washington, D.C. – Noah Joseph, a Michigan teenager seeking the opportunity to visit his grandmother by train, filed suit today in the United States District Court for the District of Columbia against the National Railroad Passenger Corporation (“Amtrak”). In his Complaint, Joseph alleges that Amtrak’s policy prohibiting teens with food allergies from train travel discriminates on the basis of disability in violation of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

Joseph, who carries an epinephrine auto injector for his allergy, had been scheduled to travel by train with his older brother from Kalamazoo, Michigan to visit his grandmother in Dearborn, Michigan during his summer break in August of 2014. However, when Joseph’s mother attempted to make reservations, Amtrak refused to book travel for Joseph because of his food allergy regardless of his ability to travel safely.

The Americans with Disabilities Act specifically prohibits Amtrak from categorically excluding individuals with disabilities. Likewise, Section 504 prohibits recipients of federal financial assistance, like Amtrak, from refusing service on the basis of disability. While Amtrak allows teenagers without food allergies to travel by train, Amtrak’s policy of denying travel to teens with food allergies is stated explicitly on the company’s website at www.amtrak.com/unaccompanied-minors-policy.

Joseph hopes that in filing suit he will encourage other teens with disabilities to stand up for their rights and that he will win the right to travel by train to visit his grandmother.

Joseph is represented by Stein & Vargas, LLP. For more information, please contact Mary Vargas at Mary.Vargas@steinvargas.com or at (240)793-3185.

Stein & Vargas, LLP is a civil rights firm committed to the principle that all people have full and equal access to all parts of society.

When a School Tries to Split Up Epinephrine Auto Injectors

Source:  http://portal.nasn.org/media/SavingLivesatSchool_Handbook.pdf
Source: http://portal.nasn.org/media/SavingLivesatSchool_Handbook.pdf

Have you ever been in a situation where something comes out of nowhere and you are too surprised to react?  A parent recently shared an experience that had all of us in a private Facebook group for parents of children with food allergies up in arms.  I asked if I could share it here on their behalf to prepare others for questions that would otherwise catch them off guard.

To set the scene, imagine you are at your school’s “meet the teacher” night and dropping off medication, paperwork, and of course epinephrine auto-injectors:

“[They] promptly took out the [EpiPens] and split the two pack and handed one back to me. I kind of had a mini-meltdown [...] I said what are you doing? You’re not supposed to split a two-pack. She told me that was [District] policy. She then checked with the nurse who said she’d been doing this for 17 (?) years and that they don’t ever keep the second one because, according to [District] policy, only a nurse is allowed to administer the second dose and that a nurse will almost never be on campus. I was a little shocked and replied that I was told NEVER to split the two-pack. They told me they could keep the second one, if I insisted. They told me they had been splitting the two-packs all morning and I was the only one who said something. [...] This was new to me as last year they took the two-pack, no problem.”

The parent here, let’s call them Pat, is entirely correct.  Epinephrine auto-injectors come in packs of two for very specific reasons.  In researching for this post, I stumbled upon a 2008 post from “Our Story: The Good, the Bad, and the Food Allergies” by Janeen Zumerling where she discussed being faced with a pharmacy trying to fill one prescription for a 2 pack of EpiPens instead of more because they figured two pens came in one box.  So while this is the first time I’ve heard personally about this happening, it could happen at school, at the pharmacy, or elsewhere.

Suggestions as to How to Respond

(The following come with the overall caution to remain respectful, polite, and evidence based in your appeals to the decision maker in question – it may also not be a good idea to have these discussions in front of your child, depending on their age, if they are present when the attempt to split injectors occurs):

1) “This is how my doctor prescribed it.”

Sometimes people will back off if you tell them the instruction comes from someone other than yourself, like an allergist or physician.  My daughter’s allergist writes her prescription for a “two pack” – does yours?  In the story above, Pat was told that the school nurse had been doing it this way for years and that no one else had complained, so this response may not work.

2) Stock Epinephrine Laws

If your state has a stock epinephrine bill, as Nevada does, you can point to the bill’s language.  Nevada specifically references “two doses” of injectable epinephrine.  NRS 388.424 (I’m so used to calling it Senate Bill 453, I had to look up the final Nevada Revised Statutes citation, it makes me happy to see it nestled in the law on the legislature’s website!) reads (in part) as follows:

Each public school, including, without limitation, each charter school, shall obtain an order from a physician or osteopathic physician for auto-injectable epinephrine pursuant to NRS 630.374 or 633.707 and acquire at least two doses of the medication to be maintained at the school. If a dose of auto-injectable epinephrine maintained by the public school is used or expires, the public school shall ensure that at least two doses of the medication are available at the school and obtain additional doses to replace the used or expired doses if necessary. 

(emphasis added).

3) Clarify – EpiPen and Auvi-Q versus Twinject

If your injector is the Auvi-Q or EpiPen, that the Twinject is the only injector where the first dose of epinephrine is an autoinjector and the second is a traditional injection that might cause the concern regarding a nurse administering it.  (Source)  Even so, the doses should be kept together.

4) Look into self-carrying

If your child is responsible, they may be able to carry both doses on their person instead of having to wrangle a school when it comes to attempts to split doses.

5) Turn to your 504 Plan (or IEP)

Depending on the makeup of your school (public schools fall under this, for example, it is dependent largely on the receipt of federal money), you may qualify for a “504 Plan” for your student.  (Source, I discussed school accommodations in my overview of the Fox Chapel case FARE amicus brief as well.)  This is a shorthand reference to the accommodation to which you are entitled for your student.  Don’t have one?  Request a meeting.  Even if the person trying to split your injectors is a novice on the food allergy front, they should know what a 504 plan is (stay tuned for a post on what to do when you get blank stares after mentioning it, as happened to a friend of mine recently).  Does your plan reference both doses?  The plan we have for my daughter references a second dose after 10 minutes if emergency services have not yet arrived.  Some schools may not permit a 504 plan where an IEP (Individualized Education Plan) is in place to cover other accommodations, so your allergy procedures should be contained in that document instead.

6)  Go higher up

You can speak to someone in the school district that may be more informed than the individual you’re dealing with.  If the person you’re facing is a school nurse, use data from the National Association of School Nurses.  They have a great guide about anaphylaxis here (aptly titled “Saving Lives at School“) and I’ve isolated the page about two doses of epinephrine below (click the image for a larger version).

Second Dose of Epinephrine Referenced in School Nurse Guidelines

Second Dose of Epinephrine Referenced in School Nurse Guidelines

7) Research Response Times

This may take some google searching on your part but some areas may have response times for emergency services (ie, 9-1-1) that exceed 5-10 minutes.  If you’ve ever been in a traffic jam near your child’s school, you probably won’t be surprised when you do find the stats you need.  You’ll see that this is even more important when you see my notes on biphasic reactions below.

8) Know Some of the Reasons Why Epinephrine Autoinjectors Come With Two Doses

Not only could the first injector malfunction, there may be user error (or inexperience) at play in addition to the risk of biphasic (subsequent) reactions from the same exposure or the epinephrine wearing off before help can arrive.  I’ve broken this final suggestion down with supporting information I was able to find – sometimes just knowing why a protocol is in place will help you if someone down the line challenges you.

Background Research

Here is some additional information (background research that I did) that could come in handy if someone tries to force split your two pack of injectors:

A second Dose of epinephrine is required For At Least 1 in 10 patients

While the percentages vary, a second dose is required for 10%-35% of patients experiencing an allergic emergency to deal with the symptoms of the reaction.  (EpiPen says 20%, Auvi-Q says 10%-20%, and Twinject says 35%)  Remember, of course, I am not a physician and none of this is a substitute for medical advice.  I just want to arm people with information that they could use if they find themselves in Pat’s shoes.  A study spanning 2001-2006 records for two hospitals in Boston found that 12% of children required two doses of epinephrine as opposed to one per Susan Rudders, MD, of Children’s Hospital Boston. (Source:  “Kids With Food Allergies May Need 2 EpiPens” – WebMD Health News, March 26, 2010)  The article goes on to quote Dr. Rudders as saying, “The problem is, we really don’t have good ways of identifying who will and will not need an extra dose.”

The effects of one dose of epinephrine may wear off after 10-20 minutes

Epinephrine suppresses the progression of a reaction. (Source)  It may wear off after 10-20 minutes, however, which may not be enough time for emergency help to have arrived.  (Source)  Remember, use epinephrine by injecting it into the outer thigh, call 911, also remembering to keep the patient lying down with their feet elevated and be prepared to use that second dose.

User Error And Device Malfunction

 Not that anyone wants to consider making a mistake when the situation calls for epinephrine, but in a high stress situation the person using the product may not know how or may make a mistake.  I found an interesting article from 2010 that compared four injectors (it was funded by the makers of the Intelliject, later called the Allerject in Canada or Auvi-Q in the United States) entitled: “A comparison of 4 epinephrine autoinjector delivery systems: usability and patient preference” from the Annals of Allergy, Asthma & Immunology (by Stephanie Guerlain, PhDemail, Akilah Hugine, MS, Lu Wang, MS, in Volume 104, Issue 2, Pages 172–177, February 2010 – the manuscript version is here).

The manuscript mentions that when a device malfunctioned, the likelihood of failing to follow instructions was higher.  What I was searching for were stats on malfunction but the reference here admits it is a possibility in a test setting at least:  “Studies have shown that patients and caregivers do not always correctly administer epinephrine autoinjector devices. [...] There may also be a large time lapse (several years) between when a person is trained on an autoinjector and when it must be used during an allergic reaction. Finally, a patient or care provider may be under significant stress while attempting to provide the potentially life-saving dose of epinephrine when it is used.”  Id.

As an aside, I was surprised that the most common error for use of an epinephrine injector was not holding it for the correct amount of time.  In the study I looked at,  versions of what would become the Auvi-Q (INT02 and INT01 in the study)  were used as well as the EpiPen and the TwinJect.  “The INT02 device resulted in participants committing this [(not holding long enough)] error 11 times compared with 27 (INT01), 40 (EpiPen), and 42 (TwinJect) times.”  Training across devices was held to be crucial, with the manuscript indicating that “[t]he fact that less than 50% of participants across all devices could follow the labeled instructions without committing a single error provides confirmation that the need for training on the use of epinephrine autoinjectors is still important.”

I didn’t mean to get sidetracked but I found it interesting.  At any rate, someone administering the medicine could not hold it long enough, the device itself could malfunction, the person may not be adequately trained, or the stress of the situation could cause errors as well.  With these things in mind, a second device is a very important thing to have.

Biphasic Reactions

The first time I heard of biphasic reactions I was fairly shaken.  It isn’t enough to worry about accidental exposure to an allergen without now thinking that you could have the reaction, be stabilized, only to have it return like an aftershock even hours later.  A biphasic reaction is defined as “a worsening of symptoms requiring new therapy after resolution of anaphylaxis.”  (Source)

Final Notes

I hope some or all of the above is useful!  I also hope you don’t run into push back when you work with your school.  Pat was able to get the school to retain both EpiPens and I really appreciate the talking point the story provided (thank you!).

As I stated in my post regarding EpiPen and Auvi-Q expiration dates (people are reporting in the comments that they’re receiving their $400 Auvi-Q savings cards in the mail in about 2 weeks after reporting short dated injectors, check out Amazing & Atopic and Food Allergy Pharmacist for even more if you’re following the issue), I have connections at both Mylan and Sanofi (I am the co-founder of the Food Allergy Bloggers Conference and they are both sponsors and my travel, hotel, and some food was covered for my attendance at the Mylan Summit earlier this year) – see my disclosures page as always for more.

The opinions herein are my own, do not constitute legal advice or medical advice, and are provided merely as discussion points.  I am an attorney and parent of a child with food allergies living in Southern Nevada. 

More Graphics for Food Allergy Bloggers Conference 2014

50 Days until FABlogCon!
50 Days until FABlogCon!

It has been a month since I shared some of the graphics I put together to promote aspects of the Food Allergy Bloggers Conference and I have come up with some more I thought I’d collect here.  I hope they are helping people to see the value of what we’ll have at #FABlogCon.

In addition to the graphics, we recently shared a video from last year’s conference that may be useful if you are preparing for back to school – Dr. Mike Pistiner and Lynda Mitchell spoke about allergies and education in their presentation viewable here.

With contributions from friends and family I wrote out some ideas of things to do and see in Las Vegas as well!

Four Stages of a Food Allergy Mom

Four Stages of a Food Allergy Mom

Do you have a favorite graphic?

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As always, feel free to contact me with questions if you are considering attending as I’m a co-founder and co-organizer of the conference (FABlogCon.com) along with Jenny Sprague of Multiple Food Allergy Help).  We are offering single day tickets to Las Vegas locals in case that is an option that works better for you.  You can follow the conference on Twitter or Facebook (or both!) to see new graphics as they come out.  Register to attend today and remember this is not just a blogger event!  See the schedule here for more information.

Amtrak’s Unaccompanied Minor Policy Explicitly Excludes Food Allergic Youth

If you think I talk about Food Allergies all the time here, imagine how my friends feel!  A friend from law school, Ali, wrote to me that though her daughter doesn’t deal with food allergies, she saw this policy on Amtrak’s website and was disturbed that a food allergic minor would not be permitted to ride Amtrak alone while one without food allergies might be allowed to do so.

Their site simply states:

The unaccompanied child may not have any life-threatening food allergies.

I have written to Amtrak to inquire about this policy but have not yet received a response.  If I do, I will be sure to update this post.  The full policy, with the allergy reference highlighted, is below:

If I were to speculate, there’s a lot implied here.  My mind first goes to the thought that food allergic children have to be more responsible and aware versus non-allergic children (source).  On the other hand, the teen years are notorious for risk taking behavior (source).  I am not sure that Amtrak is weighing either of these considerations in their policy, however.  They could simply want to delegate responsibility for a minor with food allergies to the individual accompanying them.  Or, to take it a step further, from reading their other statements regarding food service and nuts (source), they are taking the approach many of us have experienced where a restaurant or other location just turns a food allergic individual away without attempting basic accommodation.  As I stated, though, this is speculation.  Their automated system kept kicking me back to their dining policy and customer service e-mail has gone unnoticed thus far.

Most of all, I was not sure how to respond to my friend.  She thought it was outrageous to have such a restriction.  Here in Las Vegas we don’t really have this sort of transportation – is it common for a teen to ride a train unaccompanied in the United States?  Does Amtrak require disclosure of allergies upon ticket purchase?  To buy an unaccompanied minor ticket it seems that one has to call in and not use the online system at the outset.  To interview a child at the station to determine the ability to ride alone (included in the above policy) but exclude from that determination whether they could adequately manage their own food allergies for the duration of travel seems to attach a strict liability concern for Amtrak.  That is to say, is the act of a teen with food allergies traveling alone patently risky to the point where Amtrak cannot allow it – or such that they would point to the policy as a defense if something did happen to a teen with food allergies traveling alone?  And what of allergies that present for the first time without prior warning?  There is a push in many states already to move stock epinephrine beyond schools and onto public transportation and in restaurants (read more about Nevada’s efforts here).

The American’s With Disabilities Act (ADA for short) of 1990 established that “[n]o individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation.” 42 U.S.C. § 12182(a) (2000).  A disability under the ADA “means, with respect to an individual– a physical or mental impairment that substantially limits one or more of the major life activities of such individual.” 42 U.S.C. § 12102(2).  Arguably, food allergies, though something that can be mitigated through avoidance, impact the major life activity of eating and are covered by the ADA.  Here, I’m sure the response by Amtrak would be that the person wanting to travel could do so, albeit accompanied.  They’d try to look at the age restriction as the reason for a limitation and not at an outright discrimination based on allergy.  It certainly bears more investigation/research into the current state of disability law in the United States.  And of course none of this is legal advice or anything, I’m just wondering if this is simply a policy that has gone unnoticed or unchallenged.  My area of practice as a Nevada attorney doesn’t run to this area of law, I deal largely with elder exploitation and guardianship day-to-day, but my interest is definitely piqued by issues such as these.  (See also: my post about labeling)

My knee-jerk reaction would be that if, say, a 14 year old meets all other requirements Amtrak has for unaccompanied travel and also happens to have food allergies, I can’t see why they should not be allowed to travel alone.   What are your thoughts?  Does this strike you as a discriminatory policy?  Is this a policy that protects the potential unaccompanied youth with food allergies or does the protection run to Amtrak alone?  At what age would you be comfortable with your child, food allergic or not, traveling alone?

Disney’s “Frozen” Party Favor Idea

If you enjoyed my lightsaber valentine idea (glow sticks and Star Wars valentines), I have another idea that my daughter helped me come up with as we have been planning her “Frozen” themed 6th birthday.  When it worked so well she asked me to share it here.  Who knew the day would come when she’d say “can we post this on your blog, Mom?”  She is writing her own cookbook right now and you may even see some of those recipes in this space.

Frozen Bubble Favors

This doesn’t work with all cupcake rings, the plastic needs to be a little bit pliable, but it did work with the “Frozen” cupcake toppers we’d purchased on Amazon (amazon affiliate link or ebay search link) and these mini bubble bottles from Oriental Trading (search: hexagon bubble bottles and choose your favorite color).  Just work the ring over the top of the bubbles and there you go.  Easy peasy way to give a theme to the bubbles but also works as a food-free idea for party favors.

(For R’s 4th birthday we’re doing Chinese paper yo-yos and Power Rangers rings – his were too sturdy to work with bubble bottles.  I love August birthday planning!)

Clark County School District Procedures/Guidelines for Managing Potentially Life-Threatening Allergies

ccsn2014guidelinesscreenshot

Thank you to Dana and Duane Gordin, Principal Paula Naegle, and other parties that put so much hard work into making the CCSD Guidelines for Potentially Life-Threatening Allergies a reality.  These guidelines were 2 years in the making and made possible with support from the Food Allergy Guidelines Committee Members, key leaders of CCSD including the Board of Trustees and Superintendent, Food Allergy Research & Education (FARE), and those who participated in the Nevada FAAN/FARE walk in previous years.  The guidelines I’ve linked to below are the product of a FAAN/FARE walk grant and with Dana’s permission, I wanted to make the resource available here for download:

2014 CCSD Food Allergy Manual (pdf download) “Clark County School District Procedures/Guidelines for Managing Potentially Life-Threatening Allergies”

A copy has been sent to schools in Clark County (the district was ranked the 5th largest in the nation in 2012) as well as to local allergists.  The guidelines are 79 pages and cover everything from classroom activities to food service and laws of note.

Some highlights as I look through the document and am encouraged about the guidance Southern Nevada teachers, nurses, and other school employees receive:

  • “The emotional, as well as the physical, needs of the child must be respected.” – pg. 7
  • “Avoidance is the key to preventing a reaction.” – pg. 9
  • “Remember, students with food allergies are children, first and foremost. Do not ask them if it is acceptable to deviate from any of their individual plans. Be aware of signs of anxiety or bullying.” – pg. 11
  • Avoidance Measures for Insect Venom/Stings Allergic Reactions – pg. 13 (tips new to me included avoiding wearing blue and yellow or floral clothing and ensuring garbage is properly covered and away from play areas)
  • CCSD Regulation 5150 covers self carrying medications while CCSD Regulation 5157 covers nutrition concerns.
  • Page 24 has a school nurse checklist that would be handy for any parent meeting with a school’s nurse at the start of the school year.
  • Page 32 has a parent checklist for a school nurse to provide to a parent
  • “Every single person plays an important role in preventing food-allergic reactions, including the child with the food allergies.” – pg. 34
  • Page 35 has a teacher checklist.
  • “The student must not be required to wipe down his/her own area prior to eating to avoid accidental exposure to or ingestion of allergens.” – pg. 37
  • Page 43 includes the recommendation that cleaning supplies be marked specifically so that, say, a mop bucket used when mopping up peanut butter is not later used to clean an area meant to be free of a given student’s allergen. (A great detail I would not have considered.)
peanutfreesanitizer

Photo taken at Principal Naegle’s school in Clark County and included in the Guideline packet

  • Page 57 includes a bus driver checklist.  CCSD guidelines also prohibit eating on the bus (with a diabetes exception of course).
  • Page 62 has a resource regarding reading food labels.
  • Page 63 discusses “Constructive Classroom Rewards” and begins: “Rewarding children in the classroom need not involve candy or other foods that can undermine children’s diets and health and reinforce unhealthful eating habits.”  It concludes with two pages of suggestions of alternative rewards, including everything from privileges to trinkets/tokens.  The recommendations are taken from the Healthy Schools Campaign and adapted from the Center for Science in the Public Interest.
  • Page 73 references epinephrine auto-injectors Adrenaclick, Auvi-Q, and Epi-Pen, which is helpful since school employees may be familiar with one and not others as they go through the process of assisting families and students.

Dana and Duane Gordin are Southern Nevada food allergy advocates that for 5 years worked to direct local food allergy walks (first through FAAN, the Food Allergy Anaphylaxis Network, and then through FARE, Food Allergy Research and Education) in addition to testifying regarding stock epinephrine in Nevada and more.  One thing I didn’t know until I met Dana was that money raised by the national FAAN/FARE organization didn’t just go to funding walk operations and research activities, a small portion is used for local walk grants.  The Gordin family saw the need for training and education here in Clark County and worked hours upon hours to help make it happen.  Their eldest son graduated high school last month and their younger son is in high school so the impact of these guidelines is a wonderful parting gift!

____

Updated July 15, 2014 – Debbie Bornilla, who first brought the then-FAAN walk to Las Vegas as a director and co-leader of our local Food Allergy Parent Education Group (FAPE) provided me with the full list of people that contributed to these guidelines.  Thank you all!

Cynthia Alamshaw, Principal
DeAnn Baker, Nurse
Virginia Beck, Director of Food Services
Abby Berhe, Operations Coordinator
Debbie Bornilla, Parent & FAPE Co-Leader
Gina Clowes, Director of Education FARE
Betsy Fuentes, Food Services Coordinator
Eleanor Garrow, VP Ed & Outreach FARE
Doug Geller, Director I of Transportation
Duane & Dana Gordin, Parents & FARE Walk Directors
Michael Harley, Chief Officer Compliance
Vicki Herman, Related Services Coordinator
Sally Jost, Director of Related Services (Committee Lead)
Rod Knowles, Principal
Connie Kratky, Eq. & Diversity Coordinator
Kimberly Krumland, Risk Management Coordinator
Gwen LaFond, Director of Guidance
June Likourinnou, Nurse
Karie Mulkowsky, FARE Grants
Paula Naegle, Principal
Daniel O’Brien, Attorney CCSD Legal
Greta Peay, Director of Eq. & Diversity
Irma Pumphrey, Health Services Coordinator
Roseanne Richards, Instruction Coordinator
Lynn Row, Director of Health Services
Bevelyn Smothers, Principal
Denise Thistlewaite, Director of Instruction
Linnea Westwood, Principal

Graphics for the Food Allergy Bloggers Conference 2014

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I’ve been having fun making some spotlight images for this year’s Food Allergy Bloggers Conference and thought I’d share what I’ve done so far here.   Just about 10 weeks until the event so I am hoping these build interest – previous attendees should know we’ve got a fresh mix of topics and speakers and new attendees should know they will be welcomed with open arms.  I saw someone online ask if this was the sort of event where they’d be staying in their room the whole time and to that I would offer a resounding “no!”

As a co-manager of the event, please feel free to contact me with questions if you are considering attending.  Be sure to follow the conference on Twitter or Facebook (or both!) to see new graphics as they come out.  I can also do another roundup in a couple of weeks.  Register to attend today!  If you’re local to Las Vegas, we can work out single day passes if those are a better fit, we also might still have volunteer slots open in exchange for passes.  Just let me know.

 

Alisa Fleming

Colette Martin

Dr. Ehrlich

Erica Dermer

Dr. Gupta

Henry Ehrlich

Keeley McGuire

Dr. Stukus

Susan Weissman

vitamix

Lynda Mitchell