It was another busy weekend. On Saturday we had the opportunity to attend the “Do It for Dillon” hands-on anaphylaxis training course that was taught by Dillon’s parents at the YMCA in Port Washington. Angel and George Mueller lost Dillon eleven years ago at the age of eighteen after he was stung by a bee. They didn’t know that he had a bee allergy, and then when first responders arrived, they did not have epinephrine. Dillon passed away from this, but he had chosen to become an organ donor two years earlier, and this decision began the life-saving work of their family. After the unexpected loss of their son, the Muellers began to lead the way in trying to make epinephrine accessible to everyone. They partnered with Dr. Markman, the former president of the Wisconsin Association of Osteopathic Physicians and Surgeons (WAOPS), and together they were able to get Dillon’s Law passed in Wisconsin. It passed with 100% bipartisan support and was signed into law in 2017 in the same school gymnasium where three years earlier Dillon’s casket lay for his wake. Since then, it has been passed in Minnesota. Indiana, and Illinois. Hopefully someday soon it will also be adopted in Michigan and other surrounding states. This law allows any resident to take an approved training course, get their own personal use epinephrine delivery system (EpiPen, Neffy, or other device), and to be able to administer it to anyone who is believed to be suffering a severe anaphylactic reaction as a good Samaritan. Since this began, Angel Mueller says that they already know of over twenty times that Dillon’s Law has saved lives in our state. The first life saved was that of a young boy who was at a fair. He had a reaction to an unknown allergen, and his dad rushed him to the first aid station, but they didn’t have epinephrine. Then, over the p.a. system, they asked for anyone with epinephrine to come and help. A woman who had recently taken this course ran over, administered the epinephrine, and saved this boy’s life!
Dillon’s Law is a great step forward and we are glad that other states have adopted it too, but this process of promoting it state by state is very time consuming and lives are at stake. This is where another advocate for Dillon’s Law is helping out at the federal level. Congressman Glenn Grothman of Wisconsin has partnered with Debbie Dingell of Michigan and together they are working to get Dillon’s Law passed in Washington DC. (https://grothman.house.gov/news/documentsingle.aspx?DocumentID=4806 ) He and several members of his family attended our training session on Saturday. In fact, he sat next to me as the Muellers taught the class.
This event was not about “us” and Hannah so we were cautious about sharing our experience. (We are always careful “to not make things about us,” and it can be hard to know when to speak and when not to.) We did tell everyone how valuable this training is as it is teaching us things that we wish we had known sooner. Then after the training, we did have the opportunity to share Hannah’s Story with Congressman Grothman and the rest of the group. We were also excited to have our organ donation recipient, Abby, with us at this training, and we were able to share that unique relationship with the group too. It was a good time, and we were definitely able to talk about Hannah and share her Story Pamphlets without disrupting or distracting from Dillon’ Story and the work that his family is doing.
In talking with Congressman Grothman, I found him to be more quiet and a more thoughtful person than I expected. I guess I probably had the stereotypical image of a politician in a parade waving his arms, kissing babies, and making speeches. He was not that way at all. He did not make this training course “about him” in any way and he didn’t distract from anything that the Muellers were doing. He thoughtfully took the training course (and passed) just like everyone else. He learned about the signs of anaphylaxis and practiced giving himself epinephrine with an auto injector training device. Afterward he spoke with Dr. Markman, the Mullers, and us. He asked about the “roadblocks” that limit acceptance of this. He was disappointed to hear that cost is really the main obstacle. Everyone basically understands the need for the accessibility of these devices and organizations are willing to support this, until money gets involved… The congressman was very disappointed to hear that the cost of these devices rose from $60 in 2007 to $600 by 2016 and that the cost of producing a two pack is less than $30. Yes, personal health insurance will help an individual with these costs, but that doesn’t apply to organizations like businesses, churches, or schools. We are hearing that the lowest cost for a generic auto injector set, in our state, is about $300 for these organizations.
We are very thankful that Congressman Grothman has taken the big step of introducing Dillon’s Law in our nation’s capital. When he does this, it’s his name and reputation “on the line” so to speak. This is a very public, but yet personal thing to do as his name is attached to the legislation. After our meeting on Saturday, he will be working on getting the price down too! Colorado already capped the price at $60, and it would be great if he and his colleagues in Washington DC could lead the way in common sense accountability that would result in affordable epinephrine for everyone. This will save lives! We enjoyed our time speaking with the Congressman and we are very thankful for the work that he is doing. We offered to help him with his efforts in any way that we can with Hannah Helps. We are also thankful for the Mullers and Dr. Markman who have led the way in this area and also for allowing us to partner with them in these things. We don’t know where all this is leading, but we just keep moving forward little step by little step.
We are blessed
Hannah Helps 