Navigating Advocacy on Capitol Hill: Jake’s Story

Jake Johnston, DPAC Board Member

This blog post comes to you fresh from participating in the 2023 DPAC Hill Day, where I met with Senate and House offices about some of the most pressing issues facing people living with diabetes. It was an amazing experience and one I encourage everyone to consider joining!

Advocacy is so important for everyone living with diabetes. Every major right we enjoy today – from guaranteed issuance of health insurance policies to employment protections to $35 insulin for Medicare patients – was made possible by advocates. People from all over America shared their stories with Members of Congress and demanded change. And we have so much more to do! From reducing the cost of insulin for everyone, to making sure our devices and prescriptions are covered and available, to increasing research spending… your voice is needed to keep our progress going.

Advocacy is a constant need because Congress is constantly changing. The champions of past legislative fights may have retired. Key staff have left. New Committee Chairs have different priorities. Different political parties have been in control. Throughout this ever-changing landscape, diabetes policy and funding needs constant work to stay a priority. And every win we get sets the foundation for the next one.

That’s where you come in. Working in common cause with other advocates through organizations like DPAC, we make sure that diabetes gets the attention and focus it demands. You are a critical part of that work. DPAC is an expert organization at defining what the policy goals and asks are for Congress. Advocates connect their story of living with diabetes to the larger policy goal – and hold elected officials accountable to our shared goals.

Advocating for diabetes on Capitol Hill can be an intimidating experience so this post is an attempt to demystify the process a bit and help you as you fight for change in Washington, D.C.

The DC Congressional Office

There are three House offices and three Senate offices on opposite sides of the Capitol Building. You’ll enter the congressional offices through a security screening and metal detector. This is the time to let the extra big belt buckles and jewelry stay at home. Finding your specific office is pretty easy and you can always ask a security guard for directions.

The House offices are fairly modest in size. Usually there are 3-4 rooms made up of a small reception area where the staff assistant and interns work, a larger room where the legislative staff work, a smaller room where the scheduler, press person and Chief of Staff work, and of course, the Member of Congress’ office. Everyone is dressed up. You haven’t seen this many neckties since the thrift store outside of a retirement community. Senate offices are much larger, reflecting the larger staff and people represented. There may even be conference rooms, to the envy of most House staff!

Besides the elected official, the key staff in a congressional office are the legislative staff in charge of your policy area, the media relations staff and the scheduler. The legislative staff liaise with the elected official, make recommendations about which bills to support and how to vote on key legislation. The media staff can help drive awareness about an issue or a cause through their social media presence and constituent communications. The scheduler can help make sure that you get the time you need to meet with the right people in the office, including the Congressperson or Senator, both at home in the state and in Washington, D.C. All of the staff will look younger than what you expected. Every time.

Legislative staff meet with dozens of people every week. That’s in addition to their responsibilities of briefing the Member of Congress about policies and votes, working to draft amendments or legislation, supporting congressional committee work and communicating with key people in the state or district about upcoming votes or bills. They work extremely hard and appreciate it when advocates come in prepared and with clear asks and compelling reasons to take action.

When It Goes Well

When your advocacy meeting goes well, you walk out of the office with an adrenaline rush. It feels like checking your Dexcom and seeing a flat line 100. The member of congress and their staff were engaged with you, you connected with them and they pledged to help. You built a connection with a powerful ally and made a difference for people living with diabetes.

When It Doesn’t

The Member of Congress never showed. The staffer was disinterested and not able to provide any feedback about the topic. You feel like your time was wasted and that this elected official doesn’t care about your issue. It’s a terrible feeling. It feels like you have 3 units of insulin left in your pump and need to make it last through a meeting and lunch before you can change it.

How To Set The Stage For Success

  • Be on time. Staffers take tons of meetings and in busy times of the year – often in 15 minute increments. Make sure you are on time and ready to meet.
  • Bring business cards or a single sheet with your contact information printed.
  • Email ahead of time your meeting agenda and any background information. This helps the staff prep for the meeting and be prepared to respond to your request. If they are hearing about your issue for the first time face to face, they may not be able to give you an instant commitment or feedback.
  • Take a picture and post to social media – especially if you meet with the Member of Congress! Ask the office to do the same.
  • Share your story, but pivot to your ask. In my time on Capitol Hill, I’ve seen diabetes advocates do everything from take insulin shots in front of me as an awareness strategy to collapse in tears from telling the story of their personal hardship. Congressional folks want to know what you want them to do. Make sure that your story sets up an ask and doesn’t take away from the request.
  • Send a thank you note after you get home and follow up on your asks within two weeks. This helps your request stay attended to.

It is important to remember that you are the single greatest expert in the entire world on one specific subject: you and your life with diabetes. To be a phenomenal advocate you don’t have to have an encyclopedic knowledge of specific policies or the detailed background on every elected official. You do have to know why you care about the issues you are discussing. And why the Member of Congress should too. That’s your story. And you are the subject matter expert.

Great advocacy meetings also have an ask involved. Simply sharing your story about life with diabetes has some educational value for sure. But the best meetings give the elected official a chance to DO something to support you. That could be signing onto a bill, supporting a funding increase for research, joining a letter with other Members of Congress, etc. DPAC helps organize advocates around the asks and advocates connect their specific story to the effort.

Being an advocate is so meaningful and rewarding. Being a part of enacting change and improving the lives of people impacted by diabetes is a powerful feeling. DPAC exists to change policy and improve things for people living with diabetes. Your story and involvement is an exponential help.

Back to blog page