Diabetes Advocacy: A Non-Partisan Perspective

Let’s get d-political

November 8, 2016, USA election day, is just about here. Instead of taking a partisan approach to what has already been a chaotic and exhausting election season for everyone involved, I just want to take this moment in time to chat about affecting political change as it relates to opening the doors for life (medical care), liberty (access/choice), prosperity (affordability of chronic care), and happiness (quality of life) for people who live with type 1 diabetes.

We all have our deeply held thoughts and beliefs about what policies would best benefit the diabetes community, and who is best to enact it. With so many diverse groups of individuals falling under the wide, indiscriminate umbrella of T1D, how could we possibly all feel and believe the same way? That would likely be impossible.

Instead of simply wishing and armchair philosophizing (or Facebook philosophizing, as people are prone to do these days) about what I think should happen, I choose to prioritize action over ideology. I believe that voters need to do their due diligence by reading up on what they are weighing in on, that democracy is not a spectator sport, and as a result of these two beliefs, a third:

YOU MUST COMMUNICATE WITH YOUR ELECTED OFFICIALS.

Every time we vote for these men and women, we are actively participating in "hiring" these individuals to represent our interests at the state and federal levels. A multitude of topics come across their desk while in office. While I'm sure many congressmen/women and senators would, in earnest, like to be experts on each topic they must vote on, that simply isn't possible. Nobody can know everything there is to know about each of these things; that's why there are specialized committees and policy experts who advise based on subject.

But guess what? You too are an expert. Nobody knows what the diabetes community needs or wants (or what you/your family needs or wants in relation to diabetes) more than you do. 

What can you do to help your elected officials make an informed vote AND make sure that your interests are represented at the same time?

Write a letter/Make a call 

How is anyone supposed to know what you know or think how you think if you don't share your knowledge and thoughts with them? Writing a letter to people who can help you get what you need is a great step forward. Write more than one letter, or organize your friends and family to conduct a letter writing campaign in order to show how important it is for your official(s) to take notice of your powerful request(s).

Phone calls are a similarly effective method for making your voice heard to your elected officials. Dial your representatives in to the challenges of T1D so they can do what is within their power to help.

Sign a letter

Okay, so not everyone has the time or willingness to write their own letter asking their representative to vote one way or another. In the diabetes community, we have DPAC, JDRF Advocacy, and ADA Advocacy keeping tabs on hot topics that matter to us.

Get on the advocacy e-mail lists for these organizations and you will receive their form letters that can easily be sent to your representatives electronically with your personalization (optional) and signature, or visit their sites to find the letters and forms you need for this action.

Speak up

It can be as easy as being informed enough about your passionate opinions to be able to voice them to people in conversation when the opportunity arises. Maybe your neighbor's daughter's friend works in the office of someone who could use your influence and information before they head to Washington to cast their vote. When mentioning these things in conversation, you never know how the other party might be able to help further your efforts.

Set a meeting

Telling your story, face-to-face, is the ideal way to connect with someone over an important and sensitive topic. Whether you request a meeting as an individual or attend as part of a group, making the effort to get in front of someone and helping them to understand your point of view is an experience that is every bit as important for you as it is for the individual or team taking the meeting.

Why? Because you are literally taking action to share your perspective and/or information that is vital to your elected official's ability to make an informed vote that truly represents his/her constituency.

I have sent letters and made calls and even lobbied my representatives before, for various reasons. When I was in high school, I was very involved in a non-partisan student organization called JSA (Junior Statesmen of America), which taught me a great deal about the way our country works. Joining as a general member, then serving as secretary, vice president, then president of my chapter, I wrote mock legislation, helped to pass and quash certain bills, and experienced what it feels like to affect policy and represent others, during one of our country's most trying times (post-9/11, the financial crisis, etc.) 

Would I say that participating in this extracurricular activity prepared me to fight passionately for causes that are dear to me, here in the "real world"? Absolutely. Since I have been diagnosed with diabetes, I have learned about the implications of certain laws, as they stand, as well as laws that, in my personal opinion, need to stay or go, based on how they affect people living with this disease.

I'm signed up for those advocacy emails I mentioned above, so when a form letter comes through on an important topic, I can personalize and sign for my local officials, then forward the email on to anyone I think can or will also send to their officials. I speak to people about these issues, in social settings, when explaining how diabetes works (because policy and representation DO matter and are a major but hidden part of how we manage our disease), and especially when I find myself having the ear of someone who can pass my information or concerns forward to the people making the calls on this legislation going forward.

So when I was invited to join the JDRF OC Advocacy Committee for the "Promise to Remember Me" meeting in my district, I did everything I could to make sure I could be there. I know how important it is to have meetings like this, to tell your story, share your concerns, and look the powers that be in the eye, asking them to remember you, and other adults and children like you, when they go to cast their vote in DC.

It is easy to get hardened by politics, disconnect from your constituents, and not think about the things that keep us up at night, like access and research and affordability...but it is much harder to continue on that way when you have seen the faces of parents who don't sleep because they are always watching out for overnight lows, or adults approaching Medicare-age who are worried about losing access to CGM, or children who are asking for continued support of diabetes research so that they don't have to go through the trials of this disease for the rest of their lives. Those politicians have the ability to hear you and see you, so make them understand.

"Promise to Remember Me" (JDRF Advocacy Campaign) 2016

We had a lovely and productive meeting, and gave the congresswoman and her staff much to consider when preparing policy positions. Now she knows what symptoms doctors need to look for when diagnosing someone with T1D (and how to avoid deadly missed diagnoses), what it is like for students at school or workers in the workplace to live with diabetes, why we are passionate about research, and dedicated to making sure that once research provides improved therapies and technologies, that there is access and choice for people who need it. She promised to remember us, and across the country, meetings just like this have been taking place, where elected officials are promising to remember those of us affected by type one. Although that promise to remember may have faded for the congresswoman by the time the next vote comes around, we know that we did our part to educate and passionately advocate for our cause.

If you have been hesitant to participate in meetings like this before, I hope this encourages you to attend or maybe even set a meeting of your own at some point, especially as individual pieces of legislation begin to approach a vote.

Your voice should be heard, so let 'em hear it.