Day: May 14, 2019

Guest Post: Claire Pegg on Being A DPAC Champion

I’m Claire Pegg and I’m a DPAC Champion.

I don’t quite know how to convey what that sentence means to me. I’ve had Type 1 diabetes for 22 years. I’ve helped diagnose friends and family with diabetes by recognizing familiar symptoms. I manage care for my dad who has Type 1 and is sinking deeper and deeper into dementia. I’ve spoken up when coworkers and podcasters and news reporters made diabetes jokes that perpetuate the stigma piled on top of a chronic disease that requires my attention most every minute of every day. I’ve grown more and more frustrated at the cost that I and so many others pay for medical care, devices, and prescriptions. 

But I’ve never had a goal on which to focus my passion and the expertise I’ve gained from managing my health for so long. I’ve written letters to my Representatives and Senators but without a specific action to request I felt like a little kid, banging on the door and asking, “Could…could you guys just make things a little easier for us…somehow?”

Enter the Diabetes Patient Advocacy Coalition. I honestly didn’t know anything about DPAC when I saw a social media post asking for people to apply to be DPAC Champions. I spent some time searching online, scrolling through Twitter feeds and inadvertently learning a lot about the Durham Performing Arts Center. I submitted my application and downloaded the DPAC app. Immediately, I found concrete actions I could take, like writing my Congressional Representative to ask for his support for a bill to improve access to diabetes training for Medicare patients. The specificity of this action thrilled me. No, it wasn’t a solution to every issue affecting people with diabetes, but it was a practical solution to a particular problem. That was right up my alley.

When the email came that let me know that I had been selected as a DPAC Champion, I was humbled and excited. It felt like maybe the missing piece that I had been looking for had fallen into place. Everything about this organization appealed to me. I watched as DPAC CEO Christel Marchand-Aprigliano discussed the rising cost of insulin on CSPAN and tuned in to the House and Senate hearings on insulin cost. This was a fight I could get behind wholeheartedly. While my insulin cost is moderately affordable at $500 per year, I was seeing people with diabetes on Facebook groups having to beg for insulin because they couldn’t afford the astronomical price they were being charged to stay alive.

I flew to Washington D.C. and began a fast-paced two day training session with 25 other DPAC Champions, some new and some who had attended the previous fall. I met people with diabetes and parents of people with diabetes. I met people who had lost family members to diabetes. I spent one session in a conference room listening to the music of Continuous Glucose Monitors going off after everyone’s trip through the hotel’s breakfast buffet. 

No judgmental heads turned at every beep or alarm, and my persistent low blood sugar alert resulted in a casual offering from everyone at my table of their emergency sugar on hand. I imagine it was like what kids who go to diabetes camp for the first time must experience. Having the thing about me that makes me different be shared with that large of a group was empowering and uplifting.

The training itself was a dream come true. My favorite new thing: specificity. We Champions were briefed on bills and actions we would be asking our Congressional Representatives and Senators to support. On a bill that would improve the Medicare Diabetes Self-Management Training (DSMT,) we learned what obstacles were keeping people from accessing this training and how the new bill would address those obstacles. We learned more about Rebate Reform and how it is a critical first step to solving soaring insulin prices. 

But most importantly, we learned that we were already experts. The daily, sometimes hourly attention I have paid to managing my health for the past 22 years, complete with mistakes and burnout and good care and bad care, has made me into an authority on living with diabetes. When someone wants to know why it’s important for a person with diabetes to have access to nutrition training or to a Continuous Glucose Monitor or why Walmart insulin is not a long-term solution to insulin prices, I am indeed an expert. My story and my experiences have made me into one. 

Knowing that the people we would be speaking to on Capitol Hill were not looking for a rehearsed presentation but instead wanted to hear our stories and understand what solutions would work for us was a freeing concept.

Once our training days were completed, we spent the third day on Capitol Hill. In groups of five or six, we visited the offices of our Representatives and Senators and asked for their support on the DSMT bill, Access to Affordable Insulin legislation, and for them to join or continue to support the Congressional Diabetes Caucus. Telling my story to my Representative’s Legislative Assistant and listening to him tell me of his parent and grandparent with diabetes and his and the Representative’s desire to be involved in supporting diabetes legislation was an amazing experience. 

I felt like I was making my voice heard, not only on my behalf but on behalf of all the people with diabetes who couldn’t be there with me. I’ve never felt so useful.

 

There was so much more to the DPAC Policy Training Meeting than what I’ve spoken about here. The amazing advocates I got to know, the goosebumps of walking down the marble corridors of Senate office buildings, and the feeling of finally having a chance to speak for change and for progress will stay with me for a very long time. My hope is to continue to grow in this advocacy, returning to it whenever I and my story are needed. If this sounds like that one thing that you have been looking for, keep an eye on the DPAC Twitter and Facebook accounts for the next call for DPAC Champion applications. Maybe I’ll see you in D.C. sometime soon.

 

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