I’ve created a new Disclosures page to cover in greater detail what Mylan Specialty covered for the trip I’m about to discuss as well as other benefits I’ve received related to this blog. Their provided disclosure is as follows but I didn’t think it covered everything a reader might ask about so feel free to scroll to the bottom of the disclosures page for more detail (though there is a spoiler in there about the DC leg of my trip that I covered myself):
I disclose in any communication made by me about EpiPen® (epinephrine) Auto-Injector and/or the Mylan Specialty Blogger Summit that such communication is at my own discretion and based on my own opinion. I also disclose that my travel expenses were compensated by Mylan Specialty in exchange for evaluation and feedback on information presented during the meeting.
It is odd to say on the one hand my opinions are my own (they are) but in reality I do think I left the summit with a more favorable opinion of Mylan Specialty than before. I don’t think it was because I had my travel covered as much as the act of traveling there and meeting with people passionate about food allergy awareness and advocacy in conjunction with their product (the “EpiPen”) did impact me. I can see now why Jenny‘s story of starting the Food Allergy Bloggers Conference began with her experience gathering with other bloggers at a prior incarnation of the summit. When she approached me about helping her bring the conference to life, she even said that she wanted the experience of connection and education to be available to not just the invited few but a broader audience.
It was such a boost to visit with some wonderful advocates on April 10th and 11th. They say much of business is conducted before or after actual business hours in the form of relationship building but like true multi-tasking food allergy moms we made every minute together count. Studious notes were taken, suggestions were made, and there were more than a few laughs thrown in for good measure.
So! My husband points out to me that there’s the regular, concise way of saying things and then there is the “Homa” way. I’m going to go with the latter though never fear, I won’t be pasting my type-written notes from the summit for readers to get through. Thank heavens for small favors, right? I won’t overload any of my e-mail subscribers with this full post because it is l-o-n-g so here’s the debut of my first ever “read more” tag on the blog, something I really can’t stand on other sites but I’m hoping you will click through and I promise it isn’t a pageview grab or anything.
They (Mylan Speciality) arranged through Chandler Chicco Agency to have a car at my house at about 4am to take me to the airport for a flight to Denver as my connection on my way to Pittsburgh. Fancy, right? I loved not having to drag a family member out at that hour. It was hard leaving the children since I’ve never been away overnight from my son and the only time I was away overnight from my daughter was when I was in the hospital giving birth to my son. My mother in law was visiting and would be chaperoning a field trip that afternoon (I always get to be a chaperone on field trips so I can monitor E and the teacher need not worry about managing other children and my daughter’s food allergies). Did I mention the field trip was to the local dairy? She has outgrown her milk allergy but I anticipated that she could not have the ice cream they would be serving because of issues with nuts. Later I would ask her how she felt about the trip and she said, “I felt a little sad that I couldn’t have ice cream like the other little kids but grandma brought me and [a vegan girl in her class] safe treats and I knew it was for my safety.” Very proud that she maintained perspective about the whole thing though I’m sure there was a fair share of propaganda on the tour.
I got to Terminal 3 at McCarran International and oddly enough United checks in at that terminal but still takes off from a different terminal and was on my way after a quick breakfast and a flurry of texts to Jenny about being on my own in the world and eating a pretzel for breakfast. Living on the edge and whatnot! The flight to Denver was crowded and there was a gentleman next to me that kept falling asleep onto my shoulder. His wife didn’t want to switch seats with me (she was across the aisle) because she didn’t want to hear him snore. Seems to me she signed up for that when she got married, but I kid, they were very nice and being squished together is part and parcel of air travel.
(Lego) Abe did drop the Gettysburg Address under the seat but I retrieved it when we landed in Denver. I wish the layover had been long enough to see my mom but she had a meeting anyway, alas. The flight to Pittsburgh was pretty crowded as well, I sat next to a lady that had moved to Wyoming to be near her grandbabies but she was originally from Pennsylvania and was linking up with her siblings for a long visit. I love hearing people’s stories but I do make sure I’m not being annoying if they would rather be reading or resting on the plane. She was a teacher by trade and we had a chat about food allergies among other things. Recently I helped judge a competition through the Nevada Chapter of the American Immigration Lawyers Association (of which I’m a member) and I was bemoaning the prevalence of smiley emoticons in the essays submitted by the competing fifth graders. It must be so hard for teachers when much of the writing children are doing these days is on Facebook.
I did call the children in Denver, E had just been dropped off at school so R and I chatted for a while. I was able to talk to both kids that evening from Canonsburg, it was a long day of travel. I landed in Pittsburgh and their airport has pretty much a full size bevy of mall stores. Apparently they were a hub for a while so they invested money in their terminal only to have the hub move. I appreciated how nice it all was though! I had to wait for my baggage because they’d been too full to let me carry it on and after retrieving it I met up with the driver (he had a sign with my last name on it, I’ve always wanted to know what that was like!) and Kelley Lindberg from Utah. I had read her blog in advance of the trip when my itinerary indicated we’d be on the same flight out of Denver (though we weren’t seated together or anything) and could not wait to learn from her. She’s a writer by trade and mom of a teen boy with food allergies. She dealt with food allergies when all the support so many of us rely on just wasn’t there. Not only that, but she was a contributor to creating those resources in Utah. I first immigrated to the US via Salt Lake City so we had that connection going too. Oh, and she has this pink streak in her hair that I simply adore.
Our driver was pretty cool too, he had been a single dad for most of his children’s lives so when we opened our own doors and Kelley remarked we were used to doing things for ourselves as moms he shared his experiences as a dad. The scenery was unlike what I’m used to out west, being a history buff I tried to imagine what the landscape would have looked like to the early colonists and took it all in. So pretty! Kelley spoke about her son’s recent trip to Spain which I am in awe of because it gives me hope that E can see the world. Check out Kelley’s first post about the summit for her perspectives if you have a chance, her writing talent really comes through. I especially love this part of her post:
So if you’ve ever read one of our blogs, commented on it, or shared your food allergy story with any of us, you were right there in that conference room with us. And we were able to make suggestions for improving education and raising awareness, offer ideas for future research, and share ideas with each other for strengthening food allergy support in our own communities. (As a huge bonus, I was able to connect in a very real, very personal way with people I admire, forming friendships that I already treasure!)
It really felt like that! She hadn’t met anyone yet so we linked up with Jenny, Keeley, Kristen, Lisa, and Lindsey at the downstairs bar and said some hellos and made introductions (I’d never met Lisa, Kristen, or Lindsey in person before). By the way, I made a twitter list of all the attendees in case you’d like to follow some (or all) that were there.
I was ready to settle in my room so I got upstairs and started to prep for the dinner set for the evening with all the attendees and some of the presenters and representatives from Mylan. I am not good at social situations so I have to psyche myself up a little bit. Jenny and I got to talk some conference business before the dinner which was good. She had me try these tubers called “tiger nuts” (a most unfortunate name) that tasted like and had the texture of almonds. Very spooky. She’d received a bag to review and wanted to bring them to share with everyone because she was a big fan. I don’t know if I could get over the mental block of how similar they are to almonds but if someone makes marzipan out of them I’ll be first in line to try them! Of course, she had been working all day even in transit and had secured some sponsor okays that I needed to draft up into contracts but that could wait until after dinner.
Kelly Rudnicki was making sure she stuck to water at the gathering because she has four courses this semester for her master’s degree (on top of raising five children and being a talented food allergy cookbook author!) and she wanted to be focused for her writing. I loved talking with her about the research and interviews she was putting into her paper. It gave me a window into her process and I respect journalistic work so much more as a result. In the background of the above photo you can see Colette Martin (another fabulous food allergy cookbook author and a dear friend of mine) chatting with Tracy Bush who is coming to the Food Allergy Bloggers Conference but we had not met before. She was intrigued by all the other conferences out there like BlogHer food (where Jenny and Colette will be speaking this year) so Colette was filling her in.
It was actually 3:30pm Las Vegas time but I found a way to make room for dinner. I had all the vegetarian options of course. We had name cards on the table, and the agenda for the next day that was at each seat. I had the privilege of being seated between Bruce Lott of Mylan and Dr. Ruchi Gupta. I had never met either but it was a pleasure to chat with them. Across from me was Julie Knell of Mylan with Jenny on one side and Kelley on the other. Also at our table was Lindsey and Kimberley. We were separated in three areas but I tried to get a shot of everyone with my cellphone camera just to capture some of the energy of the gathering:
I wish we could have had a closing dinner as well because the conversations that started from the minute I arrived continued through dinner and into the next day. So much to think about regarding advocacy, disease management, and just the human elements of this journey we’re all on. Highlights included hearing from Bruce Lott about his parents being teachers in Mississippi, Dr. Gupta discussing how to approach getting children to eat former allergens after they’ve outgrown them or the like, Colette raving about American Idol, and only realizing it was time for bed when the exhausted east coasters started to say their good nights.
Poor Jenny had the start of a migraine but we still wanted to watch Elf (a running joke between us) so we did get the movie in. I debated splitting this into multiple posts but it was already the next day by the time I did go to sleep (I worked in my hotel room, I really should have slept more but I was pretty wound up by all the experiences). I also thought about blogging about the first day but instead wanted to have the whole experience before I started analyzing it.
I got to hang out in Jenny’s room as she got ready the night before but the next morning she came to visit me as I gathered my stuff for the day. I really feel like we are sisters so having her down the hall at the hotel was a fun experience. A mirror isn’t as informative as a friend to let you know which outfit is best for the day, right?
We waited in the lobby of the hotel for the bus to take us to the new Mylan headquarters in Canonsburg (the hotel was in Canonsburg but it was still a bit of a drive to the HQ). I had to laugh at Elizabeth reading the latest Allergic Living as we waited. I told her I had to get a picture so I was able to catch a smile:
Lauren Kashtan from Mylan got a picture of us on the bus, more smiling faces!
A majority of the people attending had to leave for the airport right after the last session at the summit so they brought their bags with them on the bus. When I was working on an itinerary it turned out that to make it home that day I would have to leave before the meeting ended and I was offered a morning flight instead. It meant another night at the hotel and it started my wheels turning about what I could do in the morning as I waited to leave for Vegas. I emailed back and forth with my friend Jessica from VegBooks.org and thought about renting a car so I could meet her halfway between Pittsburgh and DC to meet up or to meet up over at Falling Water which is near(ish) to Pittsburgh. I randomly decided to ask the agency arranging things if I could fly home from anywhere and they said yes, as long as I got myself there. So my idea to fly to DC was born and I bought a ticket (about $170) to Reagan National Airport. Jessica would pick me up and I had planned to find a hotel for the night before flying home Sunday morning. My friend Jennifer offered her couch in her and her husband’s studio apartment when she got wind of my plan so I was able to crash there instead. I have wanted to see the cherry blossoms bloom in DC pretty much ever since I heard of the trees that were a gift from Japan. I also wanted to see the Supreme Court! I was able to also make plans to see my friend Chris – he and I go back to Wasilla, Alaska when we were in AP Computer Science together. A friend from law school, Diann, also lived nearby and I was going to try to see her as well. So the day of the summit I kept telling people about my dream of seeing those blossoms and how excited I was. On the bus, Colette told me I had to see the hope diamond at the Smithsonian (I didn’t make it there, Colette, sorry!) and we agreed there was something cool about all things sparkly.
We pulled up to Mylan’s headquarters which had a vibe that modern environmentally friendly buildings all do – it had a beautiful atrium area with large screens welcoming the bloggers to their space. Security badges affixed, we made our way to the elevators. All very surreal at this point, by the way. I suffer from perpetual impostor syndrome and joked that I was only there because of the work I do for FABlogCon, not because this little space of the internet puts me in league with any of the fantastic bloggers I had the honor of accompanying.
I was able to be seated with Joanne LaSpina on one side and Alison Mae Rosen on the other. Allison would later be a presenter about communicating our stories, which was awesome but at the same time I violate a majority of her suggestions when I blog. Sorry Allison! Our name cards (my blog name was misspelled but it often is, considering it is a made up name in the first place) were by the breakfast offerings and we put them wherever we chose to set up shop.
Sidebar: Power outlets were plentiful but allergy friendly food choices were not. I debated mentioning it but I felt the ladies present that had restrictions of their own (as opposed to just their children) did not have equivalent options at the dinner the night before (fruit was the gluten free option instead of cake, for example) the night before or the breakfast and lunch the next day (the gluten free option contained soy, making it not an option for some). I appreciate the hospitality overall but this was my first experience attending a food allergy event not in a coordination capacity. I know from my recent experience with coordinating FABlogCon that people are more likely to advocate for their child’s or friend’s food allergy needs than their own. (So here I am advocating for my friends!) They’ll gently ask about an ingredient or even try not to be perceived an imposition and say nothing but that is why it behooves a host to take some affirmative steps to be the food allergy mom to that individual. I was with the staff at the South Point perpetually about questions and concerns last year (some ingredient lists weren’t displayed as we had planned due to a mis-communication) and most often the attendee asking the question would wave off the issue quickly. One attendee even neglected to tell us about an oral allergy and I felt terrible when they told me later. Or curry powder was used on some dishes at a station at FABlogCon and a sign helpfully let people know that the curry powder was not safe for those with a wheat allergy or celiac disease but there was no version without that ingredient. When I was a kid my parents would say that if I was hungry I would eat the choice offered to me (okay, I was doing the “but there’s nothing to eat in the kitchen!” dance) but at the same time food is social and inclusion benefits us all and we can mother one another as advocates. I know as an attorney sometimes I tell my clients that I’m going to be the squeaky wheel for them. Somehow the culture in the United States is that we are so afraid of being perceived as pushy or difficult that the folks that have no problem taking on that role get the benefit. Just something to think about!
Which sort of leads me to jump ahead a bit to the Red Cross representatives’ presentation later in the day. They were wonderful for coming and speaking and I felt tentative raising my hand to ask about the way they present their food allergy emergency preparedness plans. The response was that they consulted with doctors about those standards which is great, of course they should, but it is concerning that a national organization with the clout and industry recognition of the Red Cross depicts a seated individual being injected with epinephrine in their training videos when there is a risk of secondary injury from falling if they are standing or sitting (see, for example, #9 on this list: “It is important to lay an individual with anaphylaxis flat to improve blood flow to the heart. An upright position (standing) can lead to insufficient blood returning to the heart, a subsequent drop in blood pressure and increased risk of death. If breathing is difficult, allow the individual to sit, but not stand. If vomiting, lay the individual on their side in the recovery position.”). I actually learned about this issue from my dear friend Elizabeth Goldenberg of Onespot Allergy and felt it was a huge gap in allergy education that we don’t, as Elizabeth mentioned to me, discuss what happens after we’ve decided to inject epinephrine. We know where to inject (thigh) and depending on the brand of injector used we know how long to hold said injection (5 seconds for the Auvi-Q for example and 10 seconds for the EpiPen) but so much discussion is reserved for recognizing the signs of anaphylaxis in the first place that we may be missing valuable educational opportunities if we don’t just see the next step as the ER. Did you know, for example, that you may need to use the second injector in a two pack while you wait for assistance to arrive? (See Epipen.com) I used to assume the second dose was there in case the first was not properly administered. We can’t assume when it comes to these emergencies.
Other people in the room raised a concern that anaphylaxis training from the Red Cross was not bundled with their first aid or CPR courses. To us it of course seemed like a natural extension but an employer or other entity/individual would have to opt in to be trained and it might not be spreading the awareness needed in the “food allergy epidemic.” The representative was very helpful in getting the information to the Red Cross during her meeting with us, so she even was able to read aloud initial response e-mails near the close of the summit. Don’t you love the power of the internet? It even came up that the Red Cross training guidelines call for wearing gloves when administering epinephrine which is not something I’d come across before. I see the sanitary component but no one carries gloves and you wouldn’t want that to be a deterrent in providing assistance. Becky Fry, from the Red Cross in PA, was the training specialist representative present. I did go up to her after her presentation to connect and found her enthusiastic about the Red Cross’ ability to adapt as needed. She made a great point that training videos like those offered by them on their website are well and good but she finds out in the field that being present at an in-person training allows for discussion and nuance. She expressed that her friends and neighbors are a big source of her own awareness about food allergy. Thank you to Becky for her time and for dealing with all of us peppering her with questions!
This is where stream of consciousness blogging fails me, where was I…? Oh, still at breakfast and set-up. Julie Knell, Director of Communications at Mylan Specialty, kicked things off and highlighted a neat feature in the room which was a “tweet wall” that in real time updated with anything bearing the #mylansummit hashtag. Great incentive to use the hashtag, I may have to borrow the idea in September at FABlogCon so you’ll all know where I saw it first. Granted, any time you have a hashtag in heavy use (for those that don’t use twitter, a hashtag lets you categorize a message so it can be easily searchable) spammers will try to co-opt it and attach it to random posts so I think I will look into filtering mentions to just attendees if we do a similar tweet wall. Anyway, I swear Julie never stops smiling, she’s really sweet and outgoing (as you’d expect from a Director of Communications, I’m just always in awe of people that seem so effortless at it).
We were able to hear from Tony Mauro, Mylan North America’s President, who joked that he needed to figure out twitter before sharing some corporate background for Mylan Specialty. I jotted down this quip from Dr. Ruchi Gupta in response: “This group can show you how to tweet!” He also spoke of someone he loves carrying an Epipen before it even became part of Mylan’s portfolio after a first time reaction to shellfish as an adult. Everyone went around the room to introduce themselves at the start and I took copious notes because it is what I do and I also wanted to get a snapshot of the perspectives in the room:
Dr. Gupta – she is a physician and food allergy parent. I know I use the term “sweet” a lot but she is very sweet and generous with her time. I was starstruck by her but at the same time felt like we could have a great chat over a cup of tea.
Kelly Rudnicki (Food Allergy Mama) – Kelly shared that she is a former Chicagoan and started her journey in this arena when her son was 1 and he is now 11. She has 5 children and also writes her blog and has cookbooks and is in school for her Master’s degree right now. I got teary when she said “So many of these women are the women I turn to when I have nobody else to turn to so this is family.”
Jenny Sprague (Multiple Food Allergy Help) – Jenny spoke of FABlogCon and her status as the one in her family of four without food allergies because her sons and her husband have food allergies. Her son also has EoE.
Lisa Rutter (No Nuts Mom Group) – Lisa has two boys, ages five and six, and one of them is allergic to peanuts and tree nuts. She started the No Nuts Mom Group and there are now 50 groups in the US as well as Canada, the UK, and Australia. She is the co-leader of the local support group in Michigan.
Tracy Bush (Nutrimom) – Tracy remarked she was already going to go home with more energy and knowledge from this experience. She wrote a book called “Stepping Stones to Food Allergies” and she provides consulting services to doctors and others for outreach and awareness.
Kelley Lindberg (Food Allergy Feast) – Kelley has been dealing with food allergies with her son for 15 years so she was involved when there was not so much support out there. She helped start the Utah Food Allergy Network and is a writer (she’s even written a novel) and editor by trade. She even does medical writing and has been blogging since 2005.
Colette Martin (Learning to Eat Allergy Free) – Colette is a cookbook author and her youngest was 10 when he was diagnosed with EoE. I know Colette really well so I didn’t note what else she said in introduction but she’s a chemist in the kitchen, weighing and measuring and testing again and again to share her knowledge with readers. She was telling me about the look of her newest cookbook that should be out later this year and I can’t wait. It sounds awesome! It will be called “Allergy Free Pantry.” She’s also on the board of directors of Kids With Food Allergies which recently merged with AFAA. She avoids wheat, dairy, egg, soy, and peanut in her home and has 30 years of experience, including time at IBM.
Joanne LaSpina (Food Allergy Assistant) – Joanne’s youngest will be 14 next month and when they were 11 months old the diagnosis of food allergies to dairy, soy, wheat, and corn arose. She’s an independent college counselor so she has a lot of insight as to how food allergies are handled on college campuses (Joanne, expect a call from me in 13 years!).
Homa Woodrum (Oh Mah Deehness!) – Yes, I took notes to indicate this was when I did my intro. I said I was a professional pessimist but that food allergy advocacy is the more optimistic side of what I do when I’m not lawyering.
Allison Mae Rosen (3D Communications) – Allison introduced herself as being present with the team of presenters to talk about communication skills training. As an aside, as the day progressed she pointed me to a fantastic article in the Washington Post that I would love to expand on sometime. She came in from DC to speak so I got to tell her about my planned excursion the next day. I love that I got to sit next to an Allison because one of my best friends is named Alison and I couldn’t wait to tell her about everything when I got back.
Lauren Kashtan (Mylan) – Lauren spoke about being in a different role, I believe she was Julie Knell’s predecessor, and has been with Mylan four and a half years. She felt there was a commitment at Mylan to do the summit annually and referenced the company’s delivery of access to medicine to people worldwide.
Sherry Korczynski (Mylan) – Sherry works on marketing for “Anaphylaxis Solutions” and Epipen at Mylan and was enthusiastic about getting to show us all what Mylan was working on.
Christina Liotti (CCA – Chandler Chicco Agency) – Christina was from the agency that assisted with coordinating the event and reps from CCA were able to make it to FABlogCon last year on Mylan’s behalf so it was nice to connect with her.
Siobahn Cavanaugh (Mylan) – Siobahn mentioned that there were three prongs to Epipen at Mylan, “Awareness, Preparedness, and Access.”
Kristen Rutter (Nut Free Momma) – Kristen is related to Lisa Rutter by and has been in the food allergy community a year and a half. Her eldest was diagnosed after their first anaphylactic reaction to peanut butter while she was 8 months pregnant with her second daughter. She started her blog three days before she gave birth to her second daughter! I think that is a testament to the therapeutic power of blogging/reaching out.
Lindsey Steffensen (Frugal Food Allergies) – Lindsey really focuses on eating food allergy friendly without breaking the bank as she has three children and her oldest, age 9, has severe food allergies as well as EoE while her youngest is allergic to unbaked dairy.
Kimberly Pellicore (The Food Allergy Mom) – Kimberly’s 10 year old has allergies to peanut, tree nut, sesame, and chickpea. She spoke of her surprising journey and her goal to focus on the positive. She worried that if there was doom and gloom people who are dealing with that first diagnosis would be overwhelmed.
Ruth LovettSmith (Best Allergy Sites) – Ruth helms Best Allergy Sites, which is a free allergy directory and information guide. Her son is food allergic and is down to a tree nut allergy subsequent to peanut oral immunotherapy. She spoke in such a balanced way about how OIT helped her family.
Rachel Hayden (Mom vs. Food Allergy) – I love Rachel’s blog name, by the way, it really is “Mom vs. Food Allergy” for so many of us! Her own mother was one of the attendees, along with Rachel herself, at the Food Allergy Bloggers Conference last year and I recall her telling me of her experiences and worries as a mother and grandmother. Rachel has a 4 1/2 year old with food allergies and is incredibly down to earth.
Elizabeth DiBurro (EBL Food Allergies) – Elizabeth has two boys and her youngest has EoE and a long list of food allergies. Elizabeth and her husband love the outdoors by the way, he traveled to FABlogCon with her last year and was able to go biking with my husband and I am so glad they both made the effort to see the natural beauty of Southern Nevada while they were here. Maybe I can convince her to come early this year so she can go riding as well (Elizabeth, you are welcome to use my bike!). She remarked that she has the goal to “help moms feed their kids” and that so many parents don’t know how to cook so a food allergy diagnosis turns things upside down.
Keeley McGuire (Keeley McGuire Blog) – Keeley’s daughter is 8 and allergic to peanut, tree nut, and gluten. Keeley said she is in sales and project management – my notes have “pink construction hat” in parentheses so I don’t know if Keeley said she actually wears one or if she is one of the lone women in her field. She focuses on lunchbox packing so that kids with allergies can be “proud of the foods they pack.”
Mike Tringale (Asthma and Allergy Foundation of America / KFA) – Mike said that AAFA turned 60 years old last year, remarking that the “disease has gotten worse but the tools and advocates have gotten better, so we have a leg up in this fight.” His prose on the subject was spot on. He spoke of the intersection of asthma with food allergy and how much there was to learn from the asthma community’s success at gaining inroads to awareness (though “that fight’s not over yet”). He said that the public opinion for food allergy is like asthma 25 years ago, not to mention there is a higher anaphylaxis risk with comorbidity with individuals having both asthma and food allergies. (Speaking of which, we have a session planned on comorbidities at this year’s conference, I am really excited about what Jenny has put together as far as a panel to talk about the overlap with other immunological conditions.)
Bruce Lott (Mylan) – Bruce is the head of state government relations with Mylan. He’s had involvement with stock epinephrine issues for 6 years when Mylan first acquired Dey and “became involved in this space.” He is helping lead the charge for access expansion.
I knew Dey had previously held the rights to the Epipen but I did not know before Tony Mauro’s talk that Mylan’s “specialty” is in generic drugs. 80% of prescriptions in the US are generics. Mylan only has three brand names in their portfolio which is fascinating to me because Epipen is fast approaching some deadlines that will put it in more of a generic standing in the marketplace. For any brand there’s a challenge in your message when you want consumers to continue using your product and not some (usually) cheaper alternative. I mulled over this and was luckily able to chat outside the conference room with Bruce Lott (Mylan, Vice President, State Government Relations) to be reassured that when we are all out in the legislatures across the country advocating for stock epinephrine and there are Mylan representatives and lobbyists at our side, we are not furthering some corporate goal. Which is not to say “corporate” is shorthand for anything nefarious, but I know on the one hand “Epipen” is becoming a proprietary eponym and on the other I am cautious to say “epinephrine autoinjector” when I do talk to legislators in our state. When my daughter leaves the house we ask if she “has her epi” (sometimes I say “do you have your auvi?”) so I did have a thought that perhaps Mylan wanted to be involved in stock epinephrine to further their penetration in the market as a brand. Mainly because I’m a marketing nerd. What Bruce Lott was able to tell me was how keenly the CEO of Mylan, Heather Bresch, feels about the lives that can be saved with epinephrine. The stories he told me really did impact my view of Mylan’s corporate culture. For example, he said Ms. Bresch was having the front page of the Reno Gazette Journal framed so she could display it after Andrue Casado received an injection of stock epinephrine after the passage of SB453 in Nevada. A company that generally offers generic drugs is probably uniquely situated to taking advantage of the stage in their product life cycle when they’re still one of the only games in town while respecting that the market is about to change. While it is hard to pay around $200 to refill a single prescription for epinephrine for our family, if I try to think about it as an annual donation to advocacy efforts and access for those that can’t afford it, it helps a little. Kind of like how I pretend my tax dollars are paying my brother’s military salary, also known as “fuzzy math.”
The brand update with Julie Knell and Sherry Korczynski followed the overview of Mylan and the new campaign from Mylan was a huge improvement over the birthday party snafu (they had a previous ad that implied you could take risky behavior and “be prepared” for anaphylaxis in those situations, see Elizabeth Goldenberg’s overview and update here.) Interestingly enough, the new campaign still uses the “be prepared” language but the spin is that baseball games and other social events are inevitable so you need to carry your epinephrine. The ads are pretty fancy and show people of all ages and walks of life talking about carrying their Epipens but don’t show any of them carrying an Epipen. I can see how marketing-wise there’s such a larger market than those of us that use the product already so no one wants to actually see an injector on an ad and many people do carry an Epipen in a concealed fashion like with a leg holster or in a purse but one scene shows a boy at the beach and that is exactly the sort of instance where a family might forget to take theirs with them or store it appropriately to protect from a too hot day. The summit was a great setting to provide that kind of feedback to Mylan because food allergy is hopefully on track to become accepted and accommodated in the way asthma is now, and I know commercials do show people using their inhalers… I mean, what a great opportunity if you’re spending ad dollars already to get people’s attention about how to actually use the product?
Ms. Korczynski has been with Mylan 6 years and has experience with food allergies from meeting with advocates. She remarked “what you do that is so special… is you help give people a voice.” She spoke about feedback being welcome and also instructed us to include disclosure language in our posts about the event. The disclosure language is part of why I am doing one extra long post because I only wanted to include it once instead of across several posts. Mention was made of the smart phone app that includes the Epipen training video. I haven’t tried the app though I have used the online registration tool for an Epipen in the past. I think back then all it did was let me know when it was expiring based on the registered number I had. The app lets you keep an allergen profile that is kept on the phone and not shared with Mylan (great to know for privacy concerns).
The most shocking statistic she shared was from their market research that showed only 5% of people with life threatening allergies are getting refills in year 3. I hope I wrote that down correctly, because later there was a correction about one of the stats but I don’t think it was this one. If anyone’s notes are clearer, please let me know! Apparently, the further people get from an anaphylactic event, the less likely they are to feel the need to carry an injector. I met with people on my trip even that don’t carry their injector so I certainly see that. She spoke of “avoidance first,” then an anaphylaxis action plan, and then the Epipen. A new website will be launching with the campaign about preparedness with ads in print running in Women’s Day, Real Simple, and Parents magazine. I even saw the tv ad in my hotel room that evening which was interesting mainly because I don’t watch television at home (just movies). Are people out there seeing these ads trickle out as well?
The “zero copay card” came up and though it doesn’t work under our insurance (the card gives us a discount from the full price prescription because our copay is so high) it is a boon for so many families. People who can qualify seem to get multiple sets of injectors for home, school, etc. I value the school access to epinephrine so much partially because my daughter carries our only set of injectors (two Auvi-Qs) with her wherever she goes. At this point I brought up a hot button issue here in Nevada: pharmacies and expiration dates. Locally we have pharmacies dispensing injectors that are not 12 months from expiration so in theory you’d have to refill in as little as 2 months sometimes. Apparently this is ludicrous because they can just exchange their stock for “fresh” injectors without penalty or cost so pharmacy outreach was something I hoped Mylan could push for. Mylan needs to know which pharmacies are pushing EpiPens near expiration, so please let me know in the comments if you’ve had experience with this! I know of one person here in Las Vegas that got their pharmacy to give them a discount on an EpiPen with a short expiration window which was also something that shocked the Mylan representatives.
Jenny brought up another outreach opportunity which is to school nurses because parents are leaving one pen in the two pack with the nurse and keeping one at home. As I mentioned above, there are many reasons for carrying two injectors! Don’t split them up to save money, though I can understand the motivation. Jenny remarked that if nurses know of the copay program they could reach out to parents and say “don’t leave an injector with me and keep one at home, use this card to get a free set.”
Packaging came up and apparently new packages will have a QR code to download the training video and the like but I did ask about an issue I’ve had before where my daughter could not carry her EpiPen (this was before her Auvi-Q) to preschool without the box exhibiting the Rx sticker. Others chimed in that their pharmacy puts the label on the pen itself but I was hoping packaging could be different than the cardboard that deteriorates and is cumbersome to self-carry if there is such a requirement. The sticker idea was sensible, though I didn’t have the pharmacy sticker anymore at that point.
Under the Epi-Pen for Schools program, 35,000 schools out of 120,000 schools have EpiPens. A new program is rolling out called the EpiLocker so that schools can opt in to receive a box that makes epinephrine accessible and identifiable (in bright yellow). This lead well into the next session because Dr. Gupta raised the concerns people have with allowing non medical personnel to administer epinephrine (though even our children know how they should do it). Kelly spoke of efforts in California for legislation regarding access and that there’s a fear from the teacher’s union regarding the training required.
Bruce Lott gave an overview of the legislative inroads next, and spoke of broadening access beyond just schools to restaurants and other public spaces. I especially liked how there are unique set ups carved out in other states where people may be away from assistance. Bruce told us, when asked, that Mylan’s platform is for permissive legislative language but not mandatory language though the various states have been going further with mandates (like Nevada!) which Mylan does support of course but they understand the limitations to their message if they were the ones seeking a mandate considering it is a product they sell. Bruce had to leave early and I am sure I made him late by chatting with him but I truly appreciate his time, patience, and perspective. I was especially interested in what he called “liability pushback” because prescribers are worried about being sued so the legislative angle needs to include liability protection for the prescriber, dispenser, trainer, and entity training said trainer. His talk prompted me to write this post.
Dr. Ruchi Gupta gave us the latest on food allergy research as well as a project she’s involved with to really track the way food allergy manifests in day to day lives for families. I will certainly share the information when it rolls out but the idea is to do a long term study using online questions for participating families so that we can get insight into things like times people are using benadryl for reactions and the like. She also spoke of gaps in education and support for minority groups which is something I feel is an upcoming advocacy issue we should all consider. Even Mylan now has training materials in Spanish which is very encouraging.
Dr. Gupta also shared that 8% of US children have a food allergy (two kids per classroom, the numbers may have gone up since the last study), 30% with multiple food allergies. There’s a “hot off the press study/paper” about Emergency Department Visits and Hospitalizations for Food Induced Anaphylaxis in Illinois in 2008-2012 that looks at kids ages 0-19 and ER visits and hospitalizations using the Illinois hospital discharge data. This is tricky because often the doctor will put something other than “anaphylaxis,” like: “cardiovascular compromise,” “shock, ” or “respiratory distress.”
In looking at factors like race, income, and the like, it has been found that low income families had lower rate of FAs (food allergies) and lower rate of being diagnosed which is unlike asthma, eczema, and other comorbid conditions. The data only looks at private insurance an Medicaid and found that the rate of increase on public insurance was a 45% annual increase in incidence of FAs.
A new emergency action plan format from FARE categorizes differently how an when to use antihistamine (a hot button issue) as Dr. Gupta stated that “allergies don’t travel alone, they travel as a gang.” Even allergists take different positions on this front and Elizabeth pointed out that there’s a fear of the needle perhaps. Joanne offered a teen perspective on how they need instruction and guidance about when to administer epinephrine and they double guess themselves. Kelly added that teens are the most vulnerable age group for these emergencies, adding she feels so vulnerable as her children age instead of less vulnerable. As far as institutional change, Dr. Gupta suggested that restaurants should ask about allergies as a matter of course and not saddle the patron with the burden of asking.
Some new research from Dr. Gupta surveyed 459 parents in pediatricians’ offices. 2/3 of them had reported food allergies to their primary care provider, so 1/3 had not told their pediatrician about food allergies they were dealing with. The process recommended for diagnosis is identification (what foods?), then testing (specific IgE is recommended over panel testing so people don’t avoid foods they can actually tolerate, which is hard to hear because as a parent we want to keep kids safe), prescribe epinephrine, refer to an allergist, and counsel the patient (reading labels, etc.).
After surveying the respondents Dr. Gupta said they looked at the medical records and found only two of the five recommendations were being followed/done. Only half of children had been prescribed epinephrine and action plans were not being given. Doctors were claiming, to counter the concern raised by the records, that they were prescribing epinephrine but not charging it while others were saying they just didn’t know about the patients’ food allergies.
Mothers and fathers were surveyed separately! I found this fascinating because we all discussed that mothers tend to be the reporting party when it comes to food allergies but the study wanted to see the level of awareness of the parents apart from one another. The questions were the same and included how they felt about physicians, how they felt about the quality of their life, empowerment, etc.
At this point sibling allergies came up and Dr. Gupta said siblings will usually get a positive skin prick test result but may not actually be allergic. This is something of concern to me because I keep being told by the allergist that they won’t test my son unless he has a reaction or a positive blood test but do I want to do the test and find he’s sensitized to allergens he is tolerating? The plan is to actually get a panel done on the blood test after our plan year re-sets this summer so I can know what to do. Dr. Gupta didn’t see why a sibling couldn’t carry their own epinephrine without a diagnosis as a better safeguard over testing and then avoiding foods that are actually safe. It is a lot ot process as far as patient education goes.
At any rate, in the survey I mentioned, mothers were more empowered than fathers and had a lower quality of life. Fathers had less empowerment but better quality of life. I am not sure about the metric for “quality of life” but it could just be universal that moms worry and dads are more practical. I simply don’t know. Here I was at a summit about food allergy management and my husband had encourage and supported me in going on this adventure. He took the Thursday I left off from work and when I was late coming home Sunday he baked cupcakes so the kids could have safe treats at a birthday party that afternoon, took them to the party. . .the whole shebang. Saturday they went to a bike festival in Henderson and even went out to eat at Cafe Rio at one point. I would say that is really empowered – to have no hesitation to be out there in the world even with food allergies. Granted, we’re about 4 years into this food allergy parent thing so I wonder where in that cycle the survey respondents were. I will say my husband does have a lot more optimism than I do and is the check and balance to my tendency to panic. I have never felt he has any fear associated with E’s allergies and is practical about avoidance being key. He has attended many pediatrician and allergist appointments. I really wish food allergy dads could attend something like this but the few I’ve tried to encourage to attend FABlogCon, for example, just don’t have flexibility to travel. I know Justin Cunningham from YoDish (an iPhone app that lets people review specific meals with an eye toward allergy) came last year, for example, but there are great male advocates out there that should have a seat at the table, so to speak. We do have a good balance of male and female speakers for this year’s conference and an uptick in male attendees associated with that hopefully.
I missed some of Siobahn Cavanaugh’s talk about Mylan’s partnerships because I had accosted Bruce Lott to talk about legislative matters. I already noted the Red Cross talk above so I will continue on to the communication skills workshop. Allison Rosen said that there are three different “microphones,” or avenues for communication: the media environment, meeting environment, and advocacy space. Some of my favorite points included:
- A high stakes communications opportunity is the wrong time for an original thought – Essentially, you can have planned spontaneity, you want to be able to think on your feet in a communications situation but you don’t want to be scrambling. Prepare and practice your message.
- Anytime you speak, it matters – No matter the environment, one person or to one hundred people, you’ve made a choice to speak in a given communications environment because you have a lot to say, so make it count.
- We can control how we prepare, how we develop our content, and how we practice and deliver a message – A video example of an unprepared individual nominated for an ambassadorship to Norway. I didn’t find the clip she used but all of the ones on YouTube are pretty painful to watch. As an example of someone well prepared, a video clip of Maria Shriver speaking to a member of the press was offered. The difference of course was meant to be drastic but when you know your subject you really are that much better off! I know for me when I prepare for a court hearing I don’t just review my motion or petition, I review all my factual notes and jot down a cheat sheet of sorts so I can answer questions off the cuff about the parties involved or even know what objectors might show up at the last minute so I am not taken off guard.
- To be a complete communicator, analyze the situation you are going to be in, think about content, and test your approach (“ACT” – Analysis, Content, Testing)
- “If you can’t explain it simply, you just don’t understand it well enough” – Albert Einstein
- ABCS of Q&A are: Answer the question, Bridge to message point, and Conclude on positive point
- If you aren’t communicating effectively, very little content gets through
- Keep it simple, Keep it conversational, Keep it moving!
The summit wrapped up with Julie Knell asking for input on how to reach mothers of children that don’t have food allergies – what venues might there be for communication, etc. I didn’t really have any good ideas except to mention that we get immersed in our own knowledge of the subject so much that we’re sometimes not as kind in online communications as we ought to be. I’m not on facebook anymore but I recall the hostility in comments and the attacks on people instead of encouraging and educating in a patient way.
Kelly Rudnicki had to leave early so she’s not in the group photo below but we did gather for a photo and people that wanted to record interviews that would be videoed were able to do so. We didn’t know what the clips would be used for but I think a couple ladies did volunteer. The first round of folks went to the airport after we said our goodbyes. Jenny and I tried to convince people to come see us in Las Vegas in September – the welcoming and collaborative feeling is wonderful, promise! If you’re nervous at all about coming, you don’t have to have a blog or anything like that and I am very approachable.
The rest of us headed back to the hotel – I think the next wave that was going to the hotel would be picked up in about an hour so they went up to the room I still had for the night to change clothes and we grabbed a bite to eat downstairs. Ruth, Joanne, Elizabeth, and Rachel kept me company before they had to leave. It went by too quickly! I really appreciated getting to know them each even better. Ruth asked about whether OIT would be discussed in the research update portion of FABlogCon since we did have Dr. Li set to speak and in case anyone else was wondering, we are certainly covering the subject. Dr. Nadeau can’t make it but it will be addressed for certain, never fear.
And then I was alone. Sigh. I bought every variety of mini ice cream at the hotel concession area and watched HGTV while I worked away on my laptop. People really need to be more sensible when they house hunt! The next morning it was time to go to DC. It was a whirlwind day. I have even more photos, so here we go…
The above was a really timely thing for me to read. The trip had already turned into a very introspective one for me and Brené Brown’s (in The Gifts of Imperfection, amazon affiliate link) wording of “Yes, I am imperfect and vulnerable and sometimes afraid, but that doesn’t change the truth that I am also brave and worthy of love and belonging.” really resonated with me.
I have written about trying to embrace courage in my life and dusting myself off when I fail but here I was about to do something I’ve always wanted to do. I am not one for “self-help” books but this was something I needed to read. I started my own law firm in January and do have a sense of professional worth but I always though if I could just lose weight, etc. etc. then I would be a worthy person. I lost 30 pounds and then gained it all back in the last year – when I had lost the weight it seemed as if life had gotten worse, I had hoped I could accept myself but instead I was still me, just in a smaller clothing size. I am back to trying to be healthy of course (this was after my ice cream purchase referenced above!), it isn’t a good idea to embrace emotional eating for myriad reasons, but I certainly do tie my view of myself to how I think others perceive me. I stress about that a lot but also things have been bubbling up (what is it about starting my 30s?) that I always thought I managed just fine but maybe I didn’t. Maybe the bullying in school hurt more than I remember. Maybe being told as a child that there is no such thing as unconditional love is why I over accommodate. Brown’s book asks that we take ourselves as we are and go from there.
Anyway, getting out of Reagan National Airport and seeing blossoms on the trees felt transformational. Jessica picked me up in a ZipCar (so cool!) and we made our way through the weekend traffic to where her husband Jeff had prepared an amazing vegan brunch. The quiche alone was the best quiche I’ve ever had, vegan or vegetarian, ever. It even had capers! Their hospitality was wonderful and I felt very loved. There are so many cool people in the world! Between the folks at the conference and my friends on my DC trip and knowing my husband and mother in law were looking after the kids at home I felt very fortunate.
Jessica suggested we start from the Supreme Court and go from there. I had no clue about the layout of DC but we knew I had to be by the tidal basin later that afternoon to meet Diann as well as Chris. There weren’t any crowds so I didn’t consider that we would be essentially working our way to where all the people had congregated. Oops. At least this clears me to do a proper visit of all the monuments and museums next time since I’ll have seen the blossoms already.
I was able to get a neat panorama of the Capitol building on my phone:
Though the Supreme Court was not open Saturday, the Library of Congress was, they had Thomas Jefferson’s library but no pictures were allowed so I did get these:
It felt very fateful that an exhibit was there about Persian Books. Even moreso when I saw that a book was open to a page with a picture of a Phoenix (since my name refers to a bird of paradise not unlike a phoenix):
I had recently reviewed a book for VegBooks about the statue on top of the Capitol Building so I tried to zoom in on it and send it to E:
Here are a few more photos from walking about – my apologies to my friend Diann who was stuck in traffic trying to meet up with me. She had texted asking if I saw a yellow kite in the air (I was trying to find her in traffic and figure out where we were relative to one another – luckily Chris was with me at that point and knew the lay of the land) and I said no but now I look through my photos there is proof that at least my phone saw the kite:
I hadn’t seen Chris since high school (14 years ago!) and Jessica along with her husband and their kiddo waited with me until I found him in the crowd. Cell reception was pretty bad because of the crowds. He said I didn’t look any different than in high school which I will take as a compliment! As he and I sat on the grass waiting for Diann the breeze was blowing petals off of the cherry blossoms and it looked like snow. So perfect.
We were able to see a couple other things as we tried to find Diann. We eventually found her car and bailed on the tidal basin with her driving us to meet up with my friend Jennifer in Chinatown. She didn’t stay with us because she had two little ones at home but I so appreciate that she braved that traffic and said hi. Thank you Diann! The rest of the evening wrapped up with tapas, dessert, a ride on the metro with Jennifer and her husband over to Jessica’s place (she had kindly stashed my luggage at her home) and then on to Jennifer’s apartment in Maryland to sleep (we took a taxi as it was getting super late). The people I saw spanned so much of my life, from high school (Chris) to college (Jennifer) to law school (Diann) to the here and now (Jessica). Funny how those patterns crop up.
The next morning I made it to the airport (Dulles), misjudged the distance to my gate after a long security line, and arrived at my gate before the gate should have closed but after the printed boarding time.
The plane was there.
I was there.
The rep from United refused to let me board.
I ran to customer service and got the last ticket on a plane to Vegas that connected in Houston but that left from another airport (Reagan) so I got a spot on a van to take me over there and made all the subsequent flights I needed to make to get home. It felt very touch and go because when I went to check my bag at Reagan they told me Dulles had marked me as a no show for the initial flight which cancelled my replacement flight to Vegas through Houston and in theory my seat could have been sold, leaving me no way home that day. The rep at Reagan remarked “Dulles does it again” so I’ll take that as a tip to skip that airport entirely if I’m ever in the area again. Oh, and I’m skipping United from here on out. I called the car service set to take me home and told them I was going to be about 8 hours later than planned. My husband went into damage control mode and the kids didn’t know any of this was going on. I so very much appreciate his calm and compassion about the whole mess. I certainly feel my own portion of personal responsibility for my errors – fatigue certainly played a role. I made a lot of people feel better about their day when they heard about mine on the journey.
Thank yous are in order to all the people mentioned in this post (except that United gate agent, I’m still having missed plane nightmares). Thank you to the gentleman coming to DC from South Africa that rode the van on my way to Reagan National that told me of the flights he missed in his international adventures as an engineer. He didn’t let my sobbing scare him away from talking to me! Thank you also to the driver in Vegas that drove me to the birthday party my kids were at instead of to the house so I could keep the letter of my promise to be home in time for the party. I got there as everyone was leaving so I was able to ride home with my family. Thank you to my mother in law for taking E on her field trip to the dairy the day I left. Thank you to my husband for encouraging me to take the trip of a lifetime.
Thank you thank you thank you. I needed the reminder about my dreams of seeing all the things I’ve read about in books. I want to take my husband and kids back to DC someday and really explore some more. There is so much to look forward to!
Thank you, as always, for reading!