Infusing Love: An Advocacy Choir

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.
Earlier this month, Jackson and I attended the Ohio Statehouse Days hosted by the Ohio Bleeding Disorder Council. This was a time for families and individuals with bleeding disorders to meet with their senators and representatives to talk about issues and legislation that is vital to our community. This is the third year that we have attended; each year it gets better and better.
After driving to Columbus, Ohio we attended a training dinner. This offered us time to meet other Ohioans with bleeding disorders, and to hear about the key talking points for our meetings the next day. Our 2015 talking points covered two House Bills. The first bill involved specialty tier pricing of factor products and the other bill focused on prior authorization issues. We also made sure to thank them for continuing flat funding. Many families with bleeding disorders use the flat funding as a secondary insurance.
Jen_MomsBlogAfter a good nights sleep we all met for breakfast in a conference room at the Riffe Center for Government and the Arts, which is where the House of Representatives resides. We recapped the talking points and off we went! Our first meeting was with Senator Uecker and we were lucky enough to meet with both the Senator and his aide. It was a great meeting, and we made sure to hit all the talking points, but more importantly we told OUR story. Jackson talked about living with hemophilia, infusion and the importance of factor. I also shared my personal experience in regards to insurance, expenses, and how hemophilia impacts our family unit. It was also important to share those fun family moments we’ve had as a family as a reminder that hemophilia doesn’t stop my son from living a productive life. Our fifteen-minute scheduled meeting turned into a forty-minute meeting, complete with photos and candy for the kids!
During lunch we shared our great experience with other attendees, and enjoyed hearing about their meetings. Many state representatives and staff attended our luncheon. We had three staff members from other districts at our table. This offered us an additional opportunity to share our story and educate them on hemophilia, the House Bills, and their support for continued funding. What a wonderful opportunity!
After lunch we had the pleasure of meeting with Representative Green. Again, we hit our talking points and then discussed our dogs, exercise, and kids. Now that Jackson and I have done a few of these, the one thing I have to remember is that the senators and representatives are people just like us… they have families, pets, and concerns too.
If attending an advocacy day sounds a little intimidating, let me tell you, it’s really not. Elected officials want to hear from us. They want to hear our stories. What better way for them to understand our community if it’s a community member telling it! If legislation comes across their desk for the bleeding disorder community they know they can vote in our favor because they remember our stories and us. In the end, we had thirty-nine families and seventy bleeding disorder advocates attend thirty-nine meetings, representing every Ohio region. Your voice matters, so get out there and share your story!

Get involved —  Go to the HFA website or click here: /advocacy/. Sign up to be an advocate. If your state doesn’t have a Statehouse Day, or you don’t feel comfortable meeting your local senator or representative in their home office you can email your concerns. It’s easy!! I’m only one voice but together we are a choir advocating for bleeding disorders.

Jen lives in Ohio with her husband, Joe, and their three children: Evelyn (20), Nora (14) and Jackson (7).

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.