Today’s installment of Advocating for Epinephrine in Nevada builds upon last’s week posting about finding your champion forStock Free Images. Once we found our champion, our next natural step was defining our needs. This was the process where as parent advocates we had to step outside of our own personal needs and look at the whole community. We had arrived at the point of asking ourselves, what is the problem and what are some possible solutions. Before we could be honest about solutions, we needed to do a reality check to make sure we did not have any hidden agendas or self-serving ideas tucked away.
image courtesy of
Once we were mentally prepared, the next step was defining the problem, who is effected by it, what are the solutions and will the solutions make the positive impact that we hope for? Even though this seems so obvious, it is not. Let’s face it, as humans, we want it all sometimes and there are lines of meeting the needs of safety and asking for too much. There were points, where we had to step back and say, “boy, we would love that, but let’s work on what is front of us today and address that next session”. In Nevada, our Legislature meets every other year, so this was tough to say, but necessary.
We defined the problem that allergic reactions and anaphylaxis are deadly if not treated immediately. We realistically looked at solving this problem to find the most efficient and effective way to access for epinephrine. Nevada is spread out into several very large regions and emergency response time were sometimes high (think 8-10 minutes is some areas and even longer in rural areas). Clearly, the need for fast access to life saving epinephrine was defined. We then created a work group of various stakeholders, people who would be effected by stock epinephrine in schools. This work group was gold! There are more details out there than anyone could ever guess! Who knew that in my school district, a bus is considered a campus, so all campus rules apply on the bus? This work group helped everyone work as a team to try to find the correct way to write such a bill so that we would not break law to make law while meeting the needs of students.
image provided by Artist Tiffany and FoodAllergyFun. com
Check out Tiffany’s site for more images. She is just one of my favorites!
Therefore, my biggest lesson from this step was to honor the importance of defining the problem, understanding needs versus wants, who will be effected by this legislation and then working directly with those stakeholders.
One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..
I applaud you for your dedication and what you are working towards – fewer kids dying or suffering from an anaphylactic food reaction or possibly even a bee sting.
Hi Kathryn, I tell you, this stuff is not for the faint of heart, but what is amazing is that families across the US are all engaging in this type of legislation. Fourteen states already have some sort of rules, regulations or legislation and there are 24 states engaged like mine.
Very inspiring on all levels. Yesterday, my kids and I made heart shaped cakes and brought them to the staff of a Senator who wiped down the hearing rooms so that my kids could attend. Just love that!