Caroline Moassessi and Kacey Larsen (among many others in Nevada) drop everything and spring into action multiple times a month when the legislature is in session. Last minute hearings? They’re there and rallying everyone else behind the scenes.
The best part is that I’ve had the chance to see them blossom into seasoned agents of legislative change just between last legislative session (2013) and this one. They get to the point but manage to bring personality and passion into the mix.
Thanks to my colleague Marc Randazza, I’ve learned it is easy peasy to get video from legislative hearings downloaded and made readily available. As Marc says, it is “[n]ice sunshine,” a reference to the sunshine act (in Nevada it is known as the open meeting law):
@woodrumlaw You look on the specific bill agenda on the legislative website, they’re all videotaped. Nice sunshine.
I’ve done just that with Monday’s AB158 hearing regarding epinephrine in camps, restaurants, and other public non-school areas (since schools have already gotten the stock epi treatment in Nevada). I wasn’t able to watch it stream live since I was at an appointment with my son but it was posted online in about two days.
Senator Hardy gets things started and is followed by Marsheilah Lyons from the Legislative Counsel Bureau, Michael Hackett, who is so kind to continue donating his time to this cause, then Caroline Moassessi of Grateful Foodie, her daughter, RN Kacey Larsen, and Dr. Stuart Stoloff. The clip is not that long and gives some great talking points as well as showing “how it’s done” when it comes to legislative testimony. Keep it brief, clear, and informative but also give it a little heart.
Did you catch Dr. Stoloff’s point about reactions to medications? And the percentage of reactions that occur outside of the home? Very useful tidbits if you’re putting epinephrine access in a broader scope. People often pre-submit written testimony so their spoken testimony supplements the written remarks a lot of the time. I’ve linked to some of the testimony that was submitted for this particular hearing (and this is the news article Caroline shows briefly in her testimony):
Thank you to everyone working on this, including those who’ve submitted comments on the legislative website and who have written notes of thanks to their representatives in the Senate and Assembly. This enabling legislation will make such a difference. Go Nevada!
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).
“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”):
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.
Now, select AB158 from the drop-down menu like so…
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.
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).
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!
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.
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.
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.
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.
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) (This Post Updated 12/1/14 to include this post by Dr. Anne Ellis about Biphasic Reactions: “Biphasic Anaphylaxis: What You Should Know“)
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!).
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.
Today, thanks to a heads up from Caroline of GratefulFoodie.com, I was able to attend the Nevada Legislative Committee on Healthcare Interim Legislative Session hearing. In Nevada, we only have legislative sessions every other year. Last year was a great year for food allergy advocacy as Senator Debbie Smith championed Senate Bill 453 regarding Stock Epinephrine in Nevada Schools. The bill eventually passed with unanimous votes in both branches of the state legislature.
This was not my first time on the fourth floor of the Grant Sawyer Building near downtown Las Vegas but it certainly was my quickest visit as our contingent was called up right after the public comment section of the meeting. I was able to visit a bit with representatives from Mylan (makers of the “Epi-pen” epinephrine auto injector) and their Nevada lobbyist as well as the co-leader of our local Food Allergy Parent Education Group, Susanne Stark, Senator Debbie Smith, and Chef Keith Norman of the South Point (and most recently board director at FAACT).
Senator Smith began by letting the committee know about the success in the last year with stock epinephrine in Nevada. She poignantly told of how when the bill passed we did not know when it would be needed but now we did (Andrue Casado being one of the lives saved). The work is not yet done, she cautioned, because access can extend to restaurants. Colin Chiles of Mylan would next expand on this point by referencing other states where unique situations were covered like New York summer camps and Alaska hunting guides carrying stock epinephrine.
Susanne followed with her account of the uses of stock epinephrine in private schools that were open to acquiring it and how in Clark County, Nevada alone there had already been 20 uses of stock epinephrine since the bill passed last summer. Keith spoke about his experiences in food safety and the need for epinephrine in restaurants and the like.
Attention turned to Kacey in Carson City, brandishing the front page of the Reno Gazette Journal featuring Andrue Casado and how his life was saved when he had his first ever anaphylactic reaction at school in Reno. After some closing remarks by Senator Smith, the committee chimed in with their words of support and personal experiences with food allergy. Senator Jones and Senator Dondero Loop had direct family connections. Senator Jones’ wife recently had an anaphylactic reaction and Senator Dondero Loop’s family member navigated food allergy at a time when epinephrine autoinjectors were not prevalent or the norm.
We laughed at taking a “selfie” after the hearing but I think it is a great way to make sure everyone is in the photo. Thank you for sharing this photo, Susanne! I care deeply about each of these great individuals and get chills just thinking of the difference each of them is making in their work. Senator Smith for her work for Nevada, Susanne (and her co-leader Debbie Bornilla) for the parents and the community in Las Vegas as a support group leader, and Chef Keith for making so many happy and safe.
After the hearing Susanne raised the question to Mylan’s representatives about expiration dates on epinephrine (we were advised to feel free to return Epi-Pens with shorter than one year until expiration when issued as the pharmacy can readily exchange them for “fresher” stock).
Excitingly for me, Colin informed me the Mylan headquarters in Pennsylvania are a great space as I am traveling tomorrow to Pittsburgh to see it for myself at the invitation of Mylan. I was not sure if I could/should accept the opportunity when it was offered to me a few weeks ago but I think what I learn could be useful to the work we are doing in Nevada. Granted, this will require a lot of disclosure on my part as my plane trip, transportation, hotel, and meals are being covered and that does create the appearance of bias but hopefully longtime readers will know that I value my editorial independence. I look forward to sharing my experience especially since it will be my first time away from my children overnight (well, except for the night I was in the hospital in labor with my son and my daughter was home with my mother in law).
I will miss my kids tremendously and am very nervous about all the new social situations but there’s a sliver of excitement about the trip and getting to see the other attendees at the “Mylan Summit” April 10-11. Here we go!