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.

The process of drafting statewide food allergy rules and guidelines is under way. While SB611 and HB2749 were huge steps, those of us dealing with life-threatening allergies now have the golden opportunity to shape school policy at a state-wide level (not just individual school and district level).   What should this document say? Should it resemble the recent comprehensive CDC guidelines? The big concern is that busy school administrators may not actually read the guidelines if they are too long (~100 page document).  In contrast, should the document be concise (~5-10 pages) with the nitty-gritty details filled in by individual school districts based on individual district and student needs?  Concise will likely be read, but the disadvantage is that important details may be left out and the needs of at-risk children may not be fully met. Pros and cons exist with either strategy.

Make your voice heard.

The Oregon Food Allergy Network, spear-headed by Amy Weinheimer, is working to draft those rules and guidelines with a few individuals at the state level. While individuals at the statewide level are sensitive to the needs of food allergic children in schools, they do not live it. They aren’t necessarily aware of or even thinking about the food allergic child left out of counting with M & M’s. They may not realize the anxiety a food allergic child faces while sitting at a desk wondering whether a previous classmate washed their hands after a peanut butter and jelly lunch. Clearly this anxiety diminishes our children’s ability to learn.  It is OUR JOB to make this reality known to individuals setting state-wide policy.  

 

Amy Weinheimer, Jessica Martin, and Shannon Bekins

Break down mental barriers.

Monday was the first day I actively participated in advocacy at our state capitol. I’ve honestly been terrified of the process. There are so many departments that are cross-coordinating. It takes me hours to begin understanding the legal jargon of just one law. I don’t know appropriate etiquette to participate with state officials.  There must be people with more time, energy, and knowledge than I to make the best decisions, right? These are just a few of my personal excuses.  I learned today that it’s easy to make mountains out of mole hills. Just showing up is powerful enough.  For me at least, I now have a baseline to work from.  Something as small as knowing how to drive to Salem and where to park the car takes a little of that “fear of the unknown” away for next time. On top of this, I learned that a pharmacist and mother of a food allergic child, Jami Onchi, advocated for last year’s HB2749 allowing epinephrine to be kept in the classroom and also requiring that an appropriate number of school staff be trained to respond and administer epinephrine in the event of an allergic emergency. She had no prior advocacy experience prior to this bill. Talk about inspiration! Break down your own mental barriers and be an active participant if you can.

Monday’s meeting (Held 3/24/14).

The purpose of the meeting was a first step to adopting statewide rules (actual food allergy policy for schools is in the works, too!). Because epinephrine is an injectable prescription medication, the statewide Oregon Administrative Rule (OAR) on prescription and non-prescriptionmedications for students in schools, needs to be amended to make sure SB611 and HB2749 fit into the existing OAR. Amy Weinheimer, pharmacist Jami Onchi, and a few extra helpers (myself included) made some wonderful suggestions for language changes. 

A few of the additions advocated by OFAN on behalf of all allergy families in Oregon –

• A provision that administering medications extend beyond school hours to include transit time on buses, and before- or after-school sponsored activities.  

• A provision that students who self-carrying epinephrine may have another individual administer the epinephrine (current wording implies that students who self-carry will self-administer their epinephrine).

• A provision that ensures students who qualify for special education or have other disabilities have procedures in place to coordinate appropriate staff to ensure complete coverage for administering epinephrine throughout the school day/school sponsored activities.

Monday’s meeting was purely information collection for those state individuals who are modifying the OAR.  We sat around a table arranged in a circle with about 20 office chairs.  Six individuals, including myself, were there to support the food allergy community in Oregon. One other individual present was a lobbyist for Mylan, the maker of Epipen. Even though there were four other unrelated administrative rules with public comment that day, nobody else was there - just us and the transcriptionist! So proud of our community. It wasn’t nearly as intimidating as we all thought and the transcriptionist was very gracious and supportive.  She later said that she understands so much of what we were saying because one of her children deals with asthma!

Sitting around the table, making our voices heard!

What’s ahead – Put Thurs. April 10, 9AM on the calendar, Oregonians!

The final OAR language will go before the state board of education.  Public comment will be at 9:30am.

Really I can’t say how proud I am of overcoming my own mental barriers, but also how proud I am of everyone else in the room overcoming their own mental barriers. We’re a small group with very little experience or mentors in this process. Amy has volunteered a lot of time and effort into making this happen, and we need more food allergy families stepping up to help in any way possible.  This is a huge task for any one individual.  If we all use our talents to help, this voluntary task will be more manageable.  Let’s just say -  I sure as heck don’t want the only advocate for food allergies in Oregon being the lobbyist for Mylan!  We need to make our voices heard.  I encourage everyone to help in any way that you can. Be a presence in Salem, even if you don’t talk. Read the actual language and make comments by email or the OFAN private facebook group.  Let OFAN know frustrations you have had with dealing with food allergies in schools.  We are the best advocates for our families!  There are school nurses and other sympathetic individuals working for the state on this issue, yes, but they do not know what it is like to be a child/parent dealing with food allergies in schools.  In time, all of these efforts will eventually bear fruit just like those beautiful cherry blossoms lining the grounds of our state capitol.

Cherry trees as far as the eye can see!