A little over 21 years ago just after midnight my second daughter was born. During the night all I could do was look at her and think about how perfect she was. Later that morning, when our amazing pediatrician came to the hospital around 10 a.m. I learned that I had become part of rare disease community. My daughter’s condition causes life threatening adrenal insufficiency meaning that she doesn’t make enough Cortisol, and like many others with adrenal insufficiency is also missing Aldosterone, 2 of 4 hormones needed to maintain life.
The most frightening aspect of my daughter’s condition is what can occur in an emergency. An illness, injury, or even a severe emotional trauma can trigger an adrenal crisis. If that occurs an immediate injection of hydrocortisone is needed to save her life. Without that injection my daughter and others like her could die in as few as 30 minutes.
Even more terrifying was the knowledge that Oregon didn’t have protocols allowing EMS personnel to administration her life saving injection. That left it up to me alone, I carried the injection wherever I went but it never occurred to me that I could do something to change my reality.
That changed when I met other parents through FB. Kirsten Norgaard I connected, we both lived in Oregon and had kids with the same form of adrenal insufficiency. We were both terrified of what could happen if we weren’t with our kids when they needed an injection. We worked with other parents and started a nonprofit, Adrenal Insufficiency United, we spoke to Kiwanis groups, newspaper reporters, attended numerous EMS conferences around the country and a couple in Oregon, set up information booths at fairs, and were interviewed on TV and radio.
It was not enough and our efforts to enlist the help of EMS were taking too long, only Kirsten’s County (Clatsop) had changed their protocols. Everyday in our Facebook group we saw how dangerous a crisis could be. Members of our groups were dying or becoming permanently disabled. We were afraid for the lives of not only our children, but of those we had come to know and love through our FB group.
During a city fair where I had set up an awareness booth, state Sen Floyd Prozanski, rode by on his bicycle, my husband saw him and told me. I took off running and yelling his name, I caught up to him and told him my daughter’s life and the lives of other Oregonians were in danger and that we needed his help. He promised to help during the next session and in 2015 he had drafted not one bill but two! One bill would be for K-12 public schools and place the hydrocortisone injection in the same category as an epi-pen or glucagon injection, the other would address EMTs and ER nurses. Everything we needed was in those bills and Kirsten and I felt that soon our children and others with adrenal insufficiency would be safe, at least in Oregon.
As we started our legislative journey we realized that the draft was just a tiny step in the process. During the long session in Oregon over 3,000 bills are introduced. How in the world could two working mom’s make our bills stand out, how would we make them see and care about our bills? April 1st was our first hearing so we had to think fast.
Than It hit me…Cupcakes! Annie, who lost her life due to complications from adrenal insufficiency loved pink cupcakes and our groups had been using a campaign called Cupcakes for Annie as a way to create awareness so why not cupcakes for the legislators.
For the cupcakes I turned to social media as a member of the FB group “Eugene Foodies” I created a post about our bills and the risk an adrenal crisis posed to our kids and about my need for cupcakes. Soon offers to bake came pouring in, an owner of a cooking store offered her industrial sized refrigerators to keep the cupcakes cool and as a drop off zone for all the bakers. I had so many cupcakes pledged that there were enough for all the legislators and their assistants. We were ready!
On April 1st four adorable children who had come to attend the hearing went to each Legislator’s office and handed out the cupcakes, flyers about our bills, and awareness buttons. Adults and children alike wore matching adrenal insufficiency awareness T-shirts so we’d be visible as a group in the hearing.
The hearing was difficult, but those cupcakes made an impression. For days, and even months after the hearing, whenever I wanted to talk to a legislator they’d remember me as the cupcake lady and comment on the kids and how yummy the cupcakes were. Doors opened wide and we had so much support.
I came to know many of the legislators both Senators & Representatives and their legislative assistants by name. I listened to their advice and kept visible so they’d remember us when the time to vote came. I made reminder cards before each vote and dropped them off. I attended and testified for other bills, making sure to sit where I could be seen, anything to keep AI and our bills in their hearts and minds. Still it wasn’t easy, we did have opposition and especially on the hard days I kept a picture in my mind of Kirsten and I standing with the governor as she signed our bills.
At the end of the session the hard work and days of driving to Salem had paid off. Our school bill passed with overwhelming support! Now all children with adrenal insufficiency enrolled in Oregon K-12 public schools will have staff trained to help them in emergencies.
Our bill targeting the EMS and Emergency Departments bill passed as well, but an amendment lessened its impact, instead of the mandatory protocols we wanted The Oregon Health Authority was tasked to give information about adrenal insufficiency to all EMS and ER personnel. Even though it wasn’t all we wanted it is still a victory because information about adrenal insufficiency is now on the State of Oregon website and due to the awareness created by our bill several other counties have now enacted protocols
Even though it can be difficult, I’d encourage anyone to try to get legislation passed. Even if your legislation doesn’t pass you’ll have educated more people about rare disease and laid the ground work for future discussion and even new bills. In my opinion, that makes all the efforts worthwhile.
I’ve also learned that working on legislation can lead to collaborations with other groups and solutions that you may not have considered or thought possible. Adrenal Insufficiency United is now working with Danny’s Dose and its founder Darlene Shelton. Our AI family joined the bleeding disorder community in MO and helped to pass Danny’s Dose which will allow Paramedics to administer patient carried specialty medications. Now we’re working together to pass more Danny’s Dose legislation in other states.
We’ve also found a solution for our Emergency Room problems because as you all know living with a rare disease means that Emergency Department staff are often unfamiliar with the specialized treatments needed for your condition. So this year in Oregon we introduced a bill to create a physician data base where specialized instructions for individuals could be accessed immediately by emergency personnel.
Even though we weren’t sure how the platform would work, my connections and relationships with the legislators from two years ago helped push it through several committees as we brainstormed how to make it happen. This in turn lead to an unexpected non-legislative solution.
All hospitals in Oregon and Washington use a platform called EDIE the (Emergency Department Information Exchange). This platform allows physicians to upload specific care recommendations for their patients. The patient is then flagged so when they check into the Emergency Department the recommendations can be read immediately at any participating hospital. Although the system has not been used for rare disease it can be and I’ve been working with those who run EDIE as it’s called to get it ready. Today I’m happy to announce that all those living in Oregon and Washington can now use EDIE to get their care recommendations uploaded. EDIE is available in several other states as well and we hope that soon those states will start using EDIE for rare disease.
So the take a way I leave you with is this.Anyone can try to pass legislation. Remember that your state senators and representatives work for you. Visit them, call them, don’t be afraid to ask them to introduce a bill for you. Even if your bill doesn’t pass the fact that it’s been introduced will lead to discussion, greater awareness, relationships and collaboration. You may even find a non-legislative solution.
Adrenal Insufficiency United and Danny’s Dose have created a non-branded collaborative website called Rare Emergency Info. This will be a valuable resource for rare disease patients looking for information about emergency treatment protocols in their cities and states.
We are seeking both individuals and rare disease groups who’d like to join us and get involved.
Send us an email to learn how to join.
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