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.

You're prepared for an allergy emergency, but is your child?

Be prepared. It’s a mantra in our house. I thought I was prepared, I thought my 6 year old son was prepared. He was not, and therefore, I was not. Let me explain…

There are “2 pillars” to managing food allergies – prevent reactions and prepare to respond to the emergency (see AllergyHome’s great educational materials). We’ve had a few years to “prepare” ourselves to respond to a food allergy emergency should it arise. I thought I was “prepared” for when to use the epinephrine autoinjector (e.g. EpiPen, Auvi-Q), and I would not hesitate to use it. As an allergy parent, you go through all the scenarios, you have nightmares about scenarios, you hear of other family’s scenarios, and every time, you think about how you would respond in that scenario.

Image used with permission by AllergyHome.org

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.

If food allergy deaths in food-allergic individuals are rare, do we change our ways?

This is a follow up post to 1 reason I despise science headlines.  It is in response to the recent press-coverage of Incidence of fatal food anaphylaxis in people with food allergy: a systematic review and meta-analysis  published in the journal Clinical and Experimental Allergy.

After a week of thought, I am content that a group of researchers attempted such a risk assessment given the existing literature, i.e. what is the risk to a population of food allergic individuals dying from an allergic reaction to food.  There is a real need for good, hard statistics to put things into perspective.  What I am unsure of is whether this study warranted the press coverage that it has received.  As discussed in my first post, there is a huge range of error surrounding their identified risk of death - 1.81 deaths per million food allergic individuals per year (with a statistical error that gives a 95% chance that the true value falls between 0.94 and 3.45 deaths per million assuming no bias).  However, there are real issues of possible bias, which includes but is not limited to possible medical coding errors surrounding death due to anaphylaxis and pinning down the true prevalence of food allergy.  This at least is a first attempt at systematic review/meta-analysis and certainly warrants more powerful studies to hone in on the true value with better accuracy and precision.  The bottom line is that even with obvious known flaws in their acquired value, it is very unlikely that the risk of food allergic individuals across the food allergic population dying from their food allergy will trump the risk we all face from accidental death.  The number of U.S. deaths due to accidental death is reported as 391 per million per year, according to the CDC.  The study authors certainly have noble intentions of this study reducing the anxiety faced by food allergic individuals or their caregivers.  Senior author, Dr. Robert J. Boyle, a pediatric allergy specialist at Imperial College London is quoted in a New York Times blog, “It’s a matter of not letting food allergy rule your or your child’s life.  The risk is surprisingly low. You still have to take precautions, but I think it’s important to see it in context.”
What I've been grappling with personally is - does this study reduce my anxiety level?  

1 reason I despise science headlines

For a week now, I've been pondering an article I came across in ScienceDaily - Dying from Food Allergy Less Likely Than Being Murdered.  As all good headlines should do, they grab the reader's attention and make you want to read more... MORE!  As a parent of a severely food allergic child, this headline certainly grabbed my attention and elicited a most visceral response - how dare they minimize our daily struggle and fear to prevent a life-threatening reaction (anaphylaxis) by comparing it to something completely unrelated (like murder?!)!  After an eye roll so large that I thought my eyeballs would permanently cramp at the top of their sockets, I opted to let the emotion settle a bit and break this down further.  Clearly, I'm biased, but I needed time to analyze this while recognizing my own biases to see if there is indeed merit to the article and the original peer-reviewed article it is based upon.

Bone marrow transplants to cure food allergies?

Let me get this out of the way from the get-go, bone marrow transplants (BMTs) to cure food allergies are not really a question up for debate - this is NOT a good treatment option for your typical food allergic individual. There I've said it - the disappointing part. More on WHY I say this further in the post where I will discuss exactly what a BMT is. Let's just say the potential life-threatening risks of a BMT (among a few other factors, such as cost) far outweigh the potential benefits of a food allergy cure - even for those of us dealing with the risk of life-threatening anaphylaxis.

So where did this business of BMTs curing food allergies even come from? This week, clinicians presented a case-study at the annual #ACAAI (American College of Asthma Allergy and Immunology) scientific meeting, that a 10-year-old boy with both leukemia and a life-threatening peanut allergy was likely cured of his peanut allergy following a BMT to treat his leukemia (Link to press coverage of the case study) [1]. First off, I cannot even imagine dealing with a life-threatening food allergy and then discovering cancer on top it. Needless to say, this family has endured a lot. The really good news is that as far as I can read in the scientific abstract from the meeting, the boy is cancer-free and peanut-allergy free! Below I am giving you the details that are given in the abstract, which inquiring minds may want to know (Meeting abstracts are published in the 2013 November Supplement to the Annals of Allergy, Asthma and Immunology).

 

Egg-cellent news

Thursday was a stressful day to say the least. It was food challenge day, and it marks the first time in living with food allergies that hope may indeed be reality.

So, when does this egg story begin?  December of 2009 marks the last time that JR, our handsome young 1 year old at the time, ate anything with eggs.  Before that point, JR regularly devoured scrambled eggs.  Like any parent, I enjoyed watching my growing boy enjoy such a wonderful source of protein.  But in December 2009, the immune "switch" was flipped and our joy quickly turned to terror as scrambled eggs suddenly evoked the scariest of immune system responses, anaphylaxis.  Vomiting, lip swelling, hives, coughing - all within 5-10 minutes.  The incredible, edible egg suddenly became not-so-incredible and definitely not edible.  For JR, eggs were poison.  (As a side note, a few weeks after the scrambled egg incident, we learned the hard way that "made on shared equipment" labels should be heeded.  Mac n Cheese made on shared equipment with egg-containing foods caused the same reaction.  We were novice food allergy parents, and absolutely heart-broken to have put JR through that terror.  JR was ridiculously sensitive to trace amounts of egg protein).

Fast forward to 2012.  Every year since 2009, JR has been tested through a blood test (RAST) for the presence of antibodies to egg protein.  You know, those same antibodies that protect us from disease?  Well for the food allergic, the immune system erroneously targets innocuous substances like eggs.  This year, the antibody level was at the threshold of being positive.

The antibody (dark green, Y-shaped structure) binding to antigen (light green circle).  In Ian's case that antigen is the "harmless" egg protein.  C'mon, immune system. Since when were eggs worse than the plague?!
Photo source:  http://www.nwfsc.noaa.gov/hab/habs_toxins/marine_biotoxins/detection/elisa.html

Hope, but not proof. 

If only it were as simple as measuring antibody levels in the blood.  Due to the unpredictable nature of the immune system when it comes to food allergies and the large error inherent to allergy testing methods, the definitive proof is the food challenge.  To put it more bluntly, this is the "test" where you go to the doctor's office and consume the offending food... and wait.  Will there be a reaction?

On a very rainy Thursday afternoon, JR and I headed into the doctor's office with 3 hard-boiled eggs and an i-Pad loaded up with Disney movies (for the waiting part).  JR was chipper.  I was terrified.  I remember what happened two and a half years ago.  I'm not sure that JR does. As a scientist, I know this "test" is necessary to confirm the egg allergy is gone (or not), but at that moment, I would have given anything to not have my son be a subject in this test.  But, hey, at least we were in the best place should a reaction occur, right?!

The egg-cellent news

Step 1 - scratch egg into the skin surface and wait (watch the Lion King)... no reaction.
Step 2 - rub egg on lips and wait (Simba just can't wait to be king)... no reaction.
Step 3 - eat a bite of egg and wait (Hakuna Matata)... no reaction.
Step 4 - eat more egg and wait (Lion King done, 4 year old takes over)... no reaction.
Step 5 - try and eat even more egg (4 year old loudly resists)... no reaction.
Step 6 - resort to every form of bribery known to parents to convince 4 year old he should eat more egg... no reaction.
Step 7 - half an egg finally goes down the gullet and Dr. agrees half an egg (instead of a whole egg) is sufficient for the test - no reaction.
Step 8 - relief and a dinner of ice cream and chocolate chips :).

It turns out, we're not quite out of the woods just yet.  Apparently, there is a small chance that the immune system could come back with a roaring vengeance to egg.  For one month, we will avoid eggs altogether.  At the end of the month, JR will be given a blood test to look for antibodies against egg.  If the antibody levels are still extremely low, JR is given the ok to eat egg!  And there will be cake, and cookies, and french toast aplenty.

Scientifically, the immune system is not my area of expertise, but I am in expert in what food allergy parents go through.  As a parent and a scientist, I can't help but wonder why in the world a medical community capable of successfully transplanting vital organs, doesn't have more reliable, indirect methods of allergy testing (e.g. any other test besides the direct food challenge test?!).  What is it that we lack in our understanding?  Finally, if JR has indeed outgrown his egg allergy, what has changed?  What has turned that immune system "switch" off?  If we can understand what turns that "switch" off, then we may just have a cure for food allergies.  I'm not an expert in the immune system scientifically, but I make it my goal everyday to try... for JR and for all of us that are walking on eggshells when it comes to food allergy.

Let's turn the food allergy switch off.