She has a master’s degree and more than 20 years’ experience in public policy and philanthropy – but behind the professional demeanor, Jennifer Jobrack also knows the worrisome realities of life as a food allergy mom.
Jobrack first became involved in food allergy advocacy when she joined the Food Allergy Initiative (FAI) in 2010 as its Chicago-based Midwest director. Not long after she began, a Chicago 7th grader named Katelyn Carlson died of anaphylaxis from peanut in food at a class party. It was a galvanizing incident: the girl had no auto-injector at school.
Jobrack soon helped to lead a lobby for Illinois’s stock epinephrine bill, a law that allows schools to keep epinephrine auto-injectors available for students in case of an anaphylactic emergency. Then she was asked to help on similar bills in other states, and when FAI and the Food Allergy & Anaphylaxis Network merged to form FARE in 2012, she began to work on advocacy almost exclusively.
Allergic Living is proud to honor Jennifer Jobrack, who today is FARE’s Senior National Director of Advocacy, as its newest “Allergy Advocate”. Her efforts in helping to move forward stock epinephrine laws – in schools and public places – not to mention numerous other accommodations, are having a big impact in the lives of those with food allergies.
In the following conversation, Allergic Living’s Gwen Smith speaks to Jobrack about everything from epinephrine access in public venues and restaurants to labeling misconceptions, airline accommodations and sesame’s labeling status.
Jen, explain to us first: the Senior National Director of Advocacy at FARE – this sounds like a big job. What does it entail?
Jennifer Jobrack: Most of what it entails is representing FARE on public policy and issues that play out at the state and industry levels. I have some interaction with federal legislators and agencies that are relevant to the food allergy world, but when there’s an issue moving through a state legislature or a topic that’s governed at the state level, that’s really my primary responsibility.
A lot of what I do is to work with and support local advocates around the country. We help them to figure out which legislators to work with and how to present an issue. It’s appropriate, and frankly more effective, to have the people who live in these states be the drivers of their own state’s process.
FARE does help behind the scenes. Let’s say there’s a bill that’s coming up for a committee meeting or a vote in a state – perhaps on stock epinephrine. We can send out an action alert to anyone in FARE’s database who lives in that state, and then set up an easy way for those interested in getting involved to contact the appropriate legislator. We will also send our own letters of support. As well, I often help volunteers and advocates with the right messaging and advice.
Now there are those who don’t need FARE’s help. There are great advocates around the country who have been doing this work a long time. While they don’t need my counsel, it’s still nice to work with them.
Most of the time, we want to be asked to work with states. We will be involved if a legislator or advocate reaches out to us, or if we’re concerned that a bill may not be coming together. But we don’t parachute in and take over a process that’s already working.
When there are food allergies in the family, education, inclusion and safety are so important. What are you working on at FARE that will help on safety and inclusion?
JJ: Across all the topics, I think the dominant theme of the advocacy world that I’ve worked on at FARE, and with colleagues here and with volunteers, has been access to epinephrine. The overarching one is making it easy for people who need epinephrine in an emergency to get it.
Schools have been a huge part of the effort, and increasingly we’re working on it with other entities. Governor Scott Walker has just signed a bill in Wisconsin, making it the 15th state to do so.
We haven’t worked in every state on epinephrine, though we’ve worked on a fair number. When it’s appropriate, we provide knowledge about food allergies, statistics, data, medical and other content expertise, and people to show up and testify or to write letters. Plus, we help with publicizing the issue.
Most readers know about stock epinephrine for schools, but what is the aim of other stock epi bills, the ones you’re calling ‘entity laws’?
JJ: The aim is to permit entities that serve the public and where allergens may be present to get a standing order from a physician to keep auto-injectors on hand for an emergency. The definition of those entities generally includes day camps, daycare centers, restaurants, sports arenas and youth athletic programs.
At FARE, we’re happy to see the extension of epinephrine availability, particularly among entities that serve children. I say this because the stock epi laws for schools generally cover kindergarten through Grade 12 to the end of the day, so if a child’s in a daycare center or an after-school program, you may not have the same access. These laws may expand the continuum of where epinephrine is available. Having access to epinephrine is critically important – about 20 to 25 percent of administrations in schools involve people whose allergy was unknown at the time of the reaction.
Prescribing a medication to a school or a sports arena was not a familiar concept. What has been learned about this in lobbying for stock epinephrine laws?
JJ: We’re learning that there are a lot of people who are afraid of epinephrine; there are people who misunderstand the safety of this medicine and the importance of using it first in a severe reaction. There are school officials, medical professionals who work within the school system, as well as medical professionals outside the school system, and legislators who all express concern that epinephrine could be an ‚Äòunsafe drug’. When a school wants stock epinephrine, it gets a physician’s ‚Äòstanding order’ as opposed to a prescription. A lot of doctors worry: they’re writing this order and they don’t know who will get it, who will administer the auto-injector and under what circumstances. So they’re afraid that ‚Äòharm could be done’.
One of our messages at FARE is: ‚ÄòThe grave harm can be done if you wait to administer, if you hesitate’. I think it’s FARE’s job, along with other advocates and colleagues in the medical community, to emphasize that: it’s a safe and effective drug; using it promptly in anaphylaxis may halt a life-threatening reaction; it’s the first line of treatment for anaphylaxis; do not stop yourself if you think it’s needed.
What other lessons have you learned from this work?
JJ: A big one that we have to do more education on is that your reaction history is not a predictor of your future reactions. There are many adults who don’t carry epinephrine because ‚ÄòI’ve never needed it before’.
Another lesson learned around stock epinephrine laws is that we’re seeing training of school personnel taking many different forms and being taught by people who may or may not have the appropriate background. So as these laws are being updated, we’ve learned to be more specific about what constitutes robust training, and not leave that to chance.
Does FARE have a way to contribute to that?
JJ: Yes. We’re launching our FARE Education Network, which will equip volunteers to make presentations with FARE-approved, evidence-based materials on food allergies. And we’re looking at other methods of providing that information to school personnel. More information will be available soon on FARE’s website, FoodAllergy.org.
Do you see any big misconceptions in managing children’s food allergies?
JJ: Advisory labels is one area of concern. These are often misunderstood by staff at schools and other institutions that purchase food for kids. For instance, my non-allergic son recently had an end of year party at his daycare. The school has a nut-free policy and yet they were purchasing commercially made ice cream for the party. They decided that the product was not only ‚Äònut-free’ because it had no nuts in the ingredients, but also that it was ‚Äònut-safe’ because there was no advisory label. I think food allergy families are generally much better about this than institutional food services, but there’s still some misconception that if there’s no advisory label, then it’s OK to eat it.
FARE’s education staff is doing a lot of work with colleges and restaurants to improve how people understand the ingredients that they’re sourcing.
Next: Airlines, Sesame’s Allergen Status, and EoE