I was diagnosed with type 1 diabetes in 2011 at age 12. After going to a doctor’s appointment where I was promised there would be no shots, I was ironically rushed to the hospital for a diagnosis of type 1 diabetes and shots for the rest of my life. Since then, I have had many ups and downs, but I have also found a community.
I have been incredibly blessed with a wonderful and supportive family. Friends stood by me during my diagnosis and many of them learned with me as to how to best take care of myself. Having this supportive network by my side, I have always had someone there to advocate for me, whether it be with insurance, at a doctor’s office, or at school.
Now that I am older and have taken a primary role regarding my care, I have realized that I can do more advocacy for both myself and the diabetes community as a whole. I have always seen advocacy as something unreachable to a college student like me, but I have come to realize advocacy comes in many forms. While I may not be advocating everyday on a federal or state level, anytime I educate others or demand the care I need in a school or healthcare setting, I am advocating for myself and others with diabetes.
I had the opportunity to attend the very first Diabetes Patient Advocacy Coalition (DPAC) Policy Training Meeting with 30+ advocates from across the country. When I first found out I had the chance to go, I was immediately intimidated, as many of the attendees have years of experience with advocacy in either their personal or professional life. Upon arrival, I quickly realized that age and experience did not matter and that I had my own unique story to share. What stuck with me the most over the weekend was learning how to develop “my story”. My story of living with diabetes is completely my own. No one can discount my own experience, which made me realize that I had no reason to be nervous.
Saturday and Sunday were spent learning about policy issues that impact the diabetes community, social media, public speaker training, the ins-and-outs of a congressional office, along with many other ways to advocate. We learned about affordable insulin and the DSMT bill (HR 5768 and S 3366), the two issues we would later be advocating for with Congress on that Monday.
In the past 15 years, the cost of insulin has nearly tripled. I have been fortunate to be able to afford insulin, but I know many are not and I often worry for when I have my own insurance.. Currently, a month’s worth of insulin for me costs $1,200! This is a staggering amount, which causes many to be unable to afford it. I was so happy to have the opportunity to speak about the importance of insulin affordability on The Hill, but we need others to join this effort. Insulin affordability is a problem that impacts everyone with T1D and it is up to all of us to share our story in order to make change happen. One thing I learned is that it only takes seven letters, emails, or phone calls for a ground swell! That means it only takes seven people to bring an issue to the attention of. All it takes is a simple letter or email to your local representative, sharing your story and concerns, and you’ll have helped advocate for the issues that people with diabetes care about. Don’t wait for others to make a change! The DPAC website is a great resource, and they even have an app with easy and quick steps to advocate for diabetes policy.
I have always been on the quiet side and never thought I would be interested in a career in advocacy, but after attending the policy training meeting, I have found something that I am extremely passionate about! I have had so many loving people advocate for me, and it is now time for me to stand up and share my story and be a voice for those who can’t.