Advocacy in Action. What a great day spent with the Arthritis Foundation at the Tennessee State Capitol! On Tuesday, February 4th, my girls and I participated in our first Arthritis Advocacy event. We were there to talk about the TN Step Therapy Reform bills, HB 1866 and SB 1935. This was a great experience for me and I’m so glad I was able to share the experience with my kids. We are already looking forward to returning to the capitol in the future to continue educating and sharing the experiences of arthritis patients with our Representatives!
Before we arrived at the capitol, my girls were nervous. They’ve never had to deal with insurance companies – — I handle that for them. My girls were concerned about what they would have to offer to the conversations. Besides, they’re not currently going through step therapy. But they quickly learned that they were there representing their friends from Arthritis Camp and fellow JIA warriors. And they learned they had the power to tell not only their own story, but to share the greater story of our community!
What I didn’t fully realize until I spent time with these legislators is how little they knew about step therapy. This is certainly not a criticism, but it highlights the need for advocates to educate legislators about their experiences. Otherwise, legislators will never fully understand the difficulties we face. As a caregiver of three kids with JIA, I take for granted the amount of knowledge I’ve accumulated to navigate the healthcare system. 100% of the legislators and staff we spoke with had no prior knowledge of step therapy and only 1 person had general knowledge once we switched the vocabulary to “fail first”. It is so important to educate our legislators on the impact step therapy has on patients. If we don’t, we risk having the legislators only hearing from the insurers. As patients and caregivers, we have a great opportunity to put a human face to a spreadsheet output.
Another great lesson from the day was things will not change overnight. One meeting is not enough. If we want the message to stick, further education will need to take place. One Senator we spoke with said he would talk with the bill sponsor and “these things are complicated”. And he is right. But if he continues to seek knowledge on the subject, I feel like we’ve succeeded. As a constituent and advocate, I have the power to help him unravel the complications and see the argument from a patient’s point of view.
I owe a huge thank you to the Arthritis Foundation, for both for being our voice in creating policy changes, but also and helping to make our own participation so easy. If you are like me, seeing my kids suffer can make me feel so powerless at times. But at this legislative event, I was able to take back some of that power and give a little to my family as well.
– Jessi Lanuza, TN Advocate
Help us raise awareness for the importance of step therapy reform in Tennessee by asking your state legislators to cosponsor HB 1866 and SB 1935!
For more information about how to get involved with advocacy in Tennessee, please contact Kristen Crawford at [email protected]