The Crohn's & Colitis Foundation asked me a few questions about my experience talking to my legislature about the needs of IBD patients and step therapy reform. Here is our Q + A! I highly recommend getting involved. Send me a DM on Instagram if you need encouragement or have questions!
Q: How did the scheduling process go?
A: The scheduling process was simple. I didn’t expect to receive anything beyond an automated email reply much less a personal email and sit down meeting. I was shocked. The Senator’s staff assistant emailed me to set up the day/time of my meeting with the Chief of Staff. This process didn’t take long at all. The staff assistant was polite and professional. When I asked for the location details I was provided with a comprehensive explanation of how to find the office which worked out perfectly on the day of my meeting.
Q: Were the materials provided helpful/what other resources from the foundation did you use?
A: The materials provided by the Crohn’s & Colitis Foundation were instrumental in preparing for my legislative meeting. The foundations infographics and educational handouts helped me gain the confidence I needed to speak to step therapy reform and greater healthcare needs for IBD patients. I browsed several pages of the Crohn’s & Colitis Foundations website prior to my meeting, all of which was helpful and well organized. I talked to other IBD warriors on my social media platform and in my community to gain their insight on what they feel needs to be brought to the legislatures attention. From there I narrowed down talking points with the Crohn’s & Colitis Foundations Education Director a few days prior to my meeting. Having the support from the foundation propelled my excitement to another level, while helping to make my first legislative meeting a success.
Q: How was the meeting?
A: The meeting was totally awesome! To be completely transparent, I was initially extremely nervous and questioned my qualifications for calling this meeting in the first place. Then I remembered, there is no credential more powerful than experience. As an IBD warrior that is what I brought to the table. After the initial introductions we got into the groove of flowing conversation. I began to really enjoy the opportunity to share my story and represent the millions of American’s fighting IBD. I was able to connect with the Chief of Staff and appeal to some of the issues that actually face the senator himself. Making a personal connection really does matter and I was proud to have found a way to do that. We asked that the senator support step therapy reform so that insurance companies cannot tell patients and providers what medications they have to fail before they can take the right medicine for their disease. I asked for research funding to continue so scientists and doctors can discover a cure. I spoke to the rising cost of pharmaceuticals and the toll that takes on those of us living with a chronic illness.
The Chief of Staff said that he would bring the information we presented to the senator for his review and will inform him of our conversation.
Q: How did you feel afterwards and would you recommend other volunteers do the same?
A: My first legislative advocacy meeting left me feeling empowered. I felt stronger, smarter and powerful. I could not be more proud in the moments following this meeting. I kept thinking to myself, “wow I did it. I stood up for myself and the 3.1 million American’s living with IBD.” I continued to smile the entire drive home. I was so excited to tell my Instagram community along with my close friends and loved ones. Standing up for what I believe in and advocating for Crohn’s & Colitis patients across the nation filled my heart with joy. This experience inspired me to continue to stand up for what I know IBD warriors need and to not stop telling my story and the story of others. I want to see improvement in the healthcare system, I cannot sit on the sideline and wait for change to come, I must be the change I want to see.
I highly recommend setting up legislative meetings, advocating and storytelling. Every IBD fighters story is different, we all bring something unique to the table. If we can all share, together we can make a difference in the lives of others.