Why YOU should participate in a food allergy research study (Northwestern University currently seeking participants)

Research scientists must continually pitch their ideas.  Scientists “pitch” a funding agency when they write a grant – an elaborate document of their proposed studies, often including significant preliminary data to convince grant reviewers that their ideas are “going to work.” Writing grants is an essential part of a scientist’s job because without the money supplied by grants, research grinds to a halt (even for a university researcher!). And if that isn’t challenging enough, the scientists performing studies with human subjects must “pitch” their ideas to recruit a sufficient number of study participants to acquire enough data to draw trustworthy conclusions. It is true – the job of a scientist is part salesperson!

So here’s my pitch to all of you.

Share this post with as many people as you know because:

1. It will help a great group of food allergy researchers at Northwestern University recruit participants to better understand a concerning problem for food allergies – what makes adolescents/young adults (14-22 year olds) more at risk from their food allergic reactions.
2. Participating is easy – it is a short survey that can be accessed by internet (i.e. you don’t have to drive to Chicago to participate!).
3. Answering the study questions will undoubtedly spin off many more questions that will help fund future grants, thus driving our understanding of this problem forward and ultimately improving the lives of those affected by food allergies.

I am including the details of the study with appropriate links below. If you’re already “sold” on sharing this widely or even participating, great! Scroll down to the section - STUDY OVERVIEW - to read the details provided directly by Dr. Ruchi Gupta’s team at Northwestern. If you need a little more “evidence,” I’ve got that, too. Read on.

Dr. Ruchi Gupta and her team with Illinois state Attorney General Lisa Madigan this past July. Dr. Gupta and her team helped advocate for a new law to expand Illinois' existing stock epinephrine for schools law.

Why I strongly support Dr. Gupta’s research group:

Any food allergy researcher who “pitches” their work to a funding agency, whether it is the federal government, a non-profit organization, or private investors must convince reviewers that food allergies are in fact a significant problem. Dr. Gupta’s group is behind many very solid studies that other researchers cite in their grant proposals to do just that – convince reviewers that yes, food allergies are in fact a large problem. Her group recently defined how prevalent food allergies are among U.S. children (1 in 13 children under 18 years of age)¹ and just how enormous the economic burden of food allergies truly is on the U.S. economy (estimated at nearly $25 billion annually).²

I have no doubt that the outcome of the current study will serve as a research catalyst for herself and other researchers - a prominent citation in a grant proposal to justify further research funding to define why adolescents/young adults are more at risk of fatal anaphylaxis from their allergic reactions.^3,4,5 While this is tragically a recognized problem, researchers still don’t fully understand why. Is it part psychology (e.g. teenagers/young adults tend to take more risks in general)?  Is it part biology (e.g. something about the biology of this age group drives stronger reactions)? Or is it some combination of both? Her work just may start to tease out the evidence to address those very questions in the future. If we understand the problem, we can design strategies to mitigate them.

Dr. Gupta “gets it.” As a mother to a child with food allergies herself, her work is not only driven by her scientific integrity, but also a very personal drive to make a difference in the lives of all who are touched by food allergies. The scientific questions she asks truly come from a deep understanding of food allergies. In addition to her busy job, Dr. Gupta lends her voice as a prominent researcher to advocate for and support the larger allergy community as a whole. She has written a book, The Food Allergy Experience, and regularly updates her blog, chronicling the many events where she has given back to the allergy community in very powerful ways.

Please help Dr. Gupta’s research group help all of us! Participate. Make a difference.

STUDY OVERVIEW:

Researchers at Northwestern Medicine are conducting a research study entitled “Risk Taking Behavior among Adolescents with Food Allergy," which is currently enrolling participants.  The goal of this study is to learn more about the risk taking behaviors of food allergic adolescents – both in regard to general risk taking and risk taking as it relates to food allergy.  In order to participate in the study, adolescents between the ages of 14 and 22 years who currently have a food allergy are being asked to complete an entirely anonymous and confidential electronic survey.  No protected health or identifying information is being collected.  No compensation is being offered in exchange for study participation. All aspects of this research study have been approved by the Northwestern Institutional Review Board, IRB STU00097291.

If you are between the ages of 18 and 22 and are interested in participating in this study, please click on this secure link to access the anonymous and confidential survey [https://redcap.nubic.northwestern.edu/redcap/surveys/?s=TcT8XLeZeA].

If you are a parent with a food allergic child between the ages of 14 and 17 and have no objections to your adolescent child participating in this study, please forward him/her this link [https://redcap.nubic.northwestern.edu/redcap/surveys/?s=TcT8XLeZeA].  The link will take him/her to the completely anonymous and confidential survey.

If you would prefer for your child not to participate, no further action is required.

If you have any questions prior to making your decision, please feel free to contact me directly at jacqueline.pence@northwestern.edu, or Dr. Gupta at r-gupta@northwestern.edu.

References:

1.           Gupta RS, Springston EE, Warrier MR, et al. The prevalence, severity, and distribution of childhood food allergy in the United States. Pediatrics. 2011;128(1):e9-e17. doi:10.1542/peds.2011-0204.

2.           Gupta R, Holdford D, Bilaver L, Dyer A, Holl JL, Meltzer D. The economic impact of childhood food allergy in the United States. JAMA Pediatr. 2013;167(11):1026-1031. doi:10.1001/jamapediatrics.2013.2376.

3.           Bock SA, Muñoz-Furlong A, Sampson HA. Fatalities due to anaphylactic reactions to foods. J Allergy Clin Immunol. 2001;107(1):191-193. doi:10.1067/mai.2001.112031.

4.           Pumphrey R. Anaphylaxis: can we tell who is at risk of a fatal reaction? Curr Opin Allergy Clin Immunol. 2004;4(4):285-290. doi:10.1097/01.all.0000136762.89313.0b.

5.           Sampson HA, Mendelson L, Rosen JP. Fatal and near-fatal anaphylactic reactions to food in children and adolescents. N Engl J Med. 1992;327(6):380-384. doi:10.1056/NEJM199208063270603.

State advocacy - On the Oregon trail

Advocacy feels a bit like slogging the Oregon Trail, tracking slowly across the Great Plains by horse-drawn covered wagon.  A good day measures progress in double digit miles.  Long, slow haul is an apt description. Ironically, winning the Oregon Trail means you make it to the Willamette River Valley, which is technically where we are. Hrrumph.  

This post is a follow-up to last year’s post on advocacy for Oregon SB611 and HB2749. I hope this serves as a call to action for Oregonians, but also provides a glimpse into the advocacy process at the state level for people in other states.  I am happy to report that these bills unanimously passed state legislature last year, but it was clear more work needed to be done. Oregon SB611 established that schools in Oregon are permitted (not required) to carry unassigned life-saving epinephrine. The rules and guidelines surrounding epinephrine and more generally allergy management in schools were saved for another day for the State Board of Education to decide.

Oregon state capitol building - Salem, OR. Blooming cherry trees everywhere!

Another day is now.

Food Allergy Bloggers Conference Wrap-up: Genius Loves Company

It has been over 4 days since I returned from warm, sunny Las Vegas and the first ever Food Allergy Bloggers Conference, belovedly going by #FABlogCon on Twitter.  Last Friday, I assumed that I would publish a wrap-up post on the blog by Wednesday.  Boy was I wrong!  I've been grappling for days now, how to put this event into the words that even begins to give it the justice it deserves.

Allergy Advocacy - On the Oregon Trail

In this post, I'm taking a break from the science and jumping on the allergy advocacy band "wagon"  (any 80's children may recognize my attempts at pun, playing off the beloved game, Oregon Trail - ha!).  I, in no way, consider myself well-versed in this endeavor, but because it is THAT important to me, here is my attempt to get you on the allergy advocacy bandwagon, too (come on, I want to see all of us successfully reach the end of the Oregon Trail, which happens to be the good 'ole Willamette Valley)!  In all seriousness though, many states have passed or are currently in the midst of legislation for stock epinephrine and their associated guidelines in schools.  What this means is that all schools, by law, would have on hand, unassigned epinephrine auto-injectors in the event of a life-threatening, anaphylactic allergic reaction.  

Why is this important?

It will save lives.  Currently, the best medication capable of counteracting anaphylaxis is injectable epinephrine.  For those of us well-versed in living with the threat of life-threatening allergies, we carry epinephrine auto-injectors wherever we go.  A trip to the grocery store - yup, got our epinephrine.  Short walk in the neighborhood on a lovely spring day - epinephrine is along for a stroll.  Anaphylaxis can happen in minutes, and time is of the essence in order to stop anaphylaxis.  Full recovery from these reactions is associated with receiving epinephrine as soon as anaphylaxis is recognized.  Fatalities from anaphylaxis occur most often when epinephrine was not administered or it was administered too late.  What this means practically is that if a reaction happens at school, waiting for emergency responders to arrive in order to administer epinephrine may be too late to reverse the reaction.

For schools, it means that epinephrine must be readily available if and when a reaction occurs.  In addition, there must be several school staff capable of administering epinephrine (not just the school nurse, but teachers, cafeteria monitors, bus drivers, etc.).  Not only will this protect children with known food allergies, but it will protect children with unrealized allergies whether it is a bee sting on the playground or a food in the school cafeteria at lunch (yes, food allergies can develop at any time without warning, even to foods that have previously been consumed without incident!).

The thing is, just having unassigned epinephrine in schools does not go far enough.  There are so many considerations of how this actually gets implemented - the "guidelines" or rules and regulations, if you will.  Not only are the guidelines important for how schools handle stock epinephrine, but they are critical for those children who have prescribed epinephrine.  By many personal accounts, how prescribed epinephrine is handled in schools has often been left to the discretion of the schools.  On the ground, this means that often times, a child's auto-injector may be locked away in a drawer in the nurse's office, where other prescribed medications are located.  However, is this really the best place if a life threatening reaction happens on a playground?  What if the nurse is away and unfamiliar faculty/staff are left fumbling for keys to unlock a drawer?  Guidelines for where prescribed epinephrine is located (e.g. on the child or in his/her classroom) and who can administer without fear of repercussions (good samaritan laws) would eliminate confusion, angst, and worry for everyone - parents, teachers, nurses, principals, administrators, children ... 

What is happening in Oregon?

I'm happy to report that two bills are currently in the works.

SB611 - Allows access to unassigned epinephrine auto-injectors in schools and directs the State Board of Education (SBE) to establish rules and guidelines that schools must follow for using unassigned epinephrine.  It will also have the SBE establish rules and guidelines for students known to have life-threatening food allergies.
(As of 4/16/13 - passed the Senate.  House needs to vote yet)

HB2749 - Requires that school district boards allow certain medications, such as epinephrine auto-injectors, be kept in a student's classrooms if requested by a parent/guardian.  It also mandates that a certain number of individuals in a school must be trained to administer epinephrine.
(As of 4/16/13 - still in committee, has not been voted on yet).

If you live in Oregon, take action!

These bills are still in progress.  If you support these bills, contact your state representative and state senator as soon as possible (Link to find out who they are, if you do not know).  In addition, you may directly email/phone the members on the house education committee (HB2749, since it is still in committee and has not been up for vote yet).  Just as a note, I am super impressed with committee chair, Representative Sara Gesler!  She sent me a direct message within hours of my email, filling me in on the status of HB2749!  Thank you, Rep Gesler!

Our work is not done - questions remain

These bills are a step in the right direction.  Major questions/concerns that I have surround SB611.  Based on the wording, I interpret it to mean that schools may choose to get unassigned epinephrine, but it is not a required by law?  In addition, the guidelines surrounding epinephrine and how life-threatening food allergies are handled are not written into law per se, but are left up to the State Board of Education to decide.  If this bill passes, what will those rules be?  How can as many voices be heard when the SBE drafts these rules and guidelines?  Presumably if HB2749 passes, then that law would be integrated into the SBE guidelines?  Please feel free to comment below with your interpretations and what further action we, the allergy community can do to have our government work for us!  All-in-all, I'm very optimistic!

Further resources

I am grateful for The Grateful Foodie.  She currently is blogging about the in progress work to get stock epinephrine in Nevada schools.  I just love how she brings the mysterious governmental processes to life and makes it feel like any of us, no matter who we are, can be advocates!

Thank you AllergyHome for providing a map of where current laws exist!  These can be a model for states that do not currently have laws on stock epinephrine.

Allergy and Asthma Foundation of America.  Fantastic resources on advocacy by one of the oldest and well-respected non-profit organizations supporting our community.

Put it on the calendar (I am!!):  Kids with Food Allergies Foundation is putting on a free webinar (April 30 11-12 pm PST) on getting unassigned epinephrine in schools!  I can't wait to hear this because I have a feeling they are going to lay it all down on what should be in legislation and how we can go about making it happen!      

Finally:  Here is a link to the letter I drafted a few days ago.  Feel free to use it as a guide if you need help getting started with your own letter.  Please know that it does not need to be as detailed or long as mine, but let your personal story be heard and why you think the law should be a certain way.  Our state reps and senators will hear you.

Why should you contact congress today to save biomedical research?

Basic science research is near and dear to my heart for many reasons.  I spent nearly 7 years of my blood, sweat, and tears, in training to be a research scientist. For this reason, I wanted to share a little more of my experience, to put a face to this mysterious world of white lab coats (or so you think!), and provide tangible reasons why basic science research is so very important to things we care deeply about - solutions for allergic conditions among many others.