Patient advocacy groups often take part in “Day on the Hill” events. This is when an organization sends a group of people to Washington DC to meet with the offices of federal representatives. I’ve attended several hill day events over the past several years with different patient advocacy groups. At this point, I’m ready to let you know some of my tips and tricks so that when you’re ready to get started and do this work, you’ll be prepared.
Your congressperson and your senators all have offices on Capital Hill. They have staff in those offices that will meet with you and listen to your story about your life with inflammatory bowel disease (IBD) and how the government can pass legislation that may help you and the 1.6 other Americans who live with these diseases. Hill day events are really a great way to get involved and to learn about your representatives and to let them (and their staff) get to know more about you too.
Hill day events are organized in such a way that it takes a lot of the heavy lifting off the volunteers (namely, you) because the meetings are already set up for you and you’re working with other volunteers so you don’t have to take meetings by yourself. You need to show up at the right office at the right time and tell your story and speak to the “asks” of the day. The advocacy group will give you some practical instructions on how to conduct these meetings and what to expect. They want you to do a good job! So you’ll get training beforehand.
Want to know even more? Listen to About IBD Podcast Episode 49 – Summer of Activism: Attending Day on the Hill for more information from me on how to get ready for Day on the Hill.
Are you ready to get started? Here’s how you can prepare yourself for those first meetings.
Tips for Your First Day on the Hill Meetings
1. Do some research ahead of time. Finding out a little about your representatives may help you to be prepared for your meetings. For instance: Is your congressperson a member of the Crohn’s and Colitis Caucus? If so, you can thank them for their support. If not, you can ask them to join. Go to the web site, Facebook page, Twitter account, and/or Instagram account for your representatives in order to learn more about them and how they’ve voted in the past.
2. Practice your elevator speech. You’ll want a few versions of your speech: a really short one and a slightly longer one. That way you’re ready if your meeting goes for 5 minutes or for 20 minutes. You may also have several other people on your team and you’ll want to make sure that everyone gets a chance to speak; it’s not quite fair to dominate the meeting, even if your story is exceptionally compelling.
3. Practice giving some information about IBD. This is probably something you’ve done before in explaining Crohn’s disease or ulcerative colitis to people in your life who have never heard of these diseases before. You’ll want to give some basics to set the tone for understanding the framework of how it affects your life and how Congress can help. You can have this written down if you like and refer to it during the meeting. For example:
I’m here representing [NAME OF ADVOCACY GROUP]. I live with [Crohn’s disease or ulcerative colitis], which is a form of inflammatory bowel disease, or IBD. There are 1.6 million Americans living with IBD, and these diseases can lead to not only a decreased quality of life but also severe disability. IBD is often called a family disease because it touches everyone who loves the person who is affected. Let me tell you how it has changed my life and how your boss can help.
4. Take a deep breath. It can be nerve-wracking to close that conference room door behind you and sit down with a staffer looking at you with an expectant expression on their face. But that’s fine: you’ve practiced!
5. Expect questions. The staffer may want to know more about IBD, the advocacy group, what an ostomy is, what kinds of treatments are needed, other types of surgery…the list goes on. You can’t really anticipate all those types of questions but having a good knowledge base about IBD can help. If you don’t know the answer: no problem. You can communicate by email or phone later.
6. Be flexible. We often have an idea of how we expect an event to unfold but the reality is often quite different. It might be necessary to pivot and change course because of a number of factors. In fact, it’s probably easier to expect changes in order to be better prepared for them.
7. Get contact information before you leave. Ask the staffer for their business card. That will have an email address and phone number so you can stay in touch about any of the items you discussed in the meeting.
8. Get a photo! In fact, get more than one! Take a photo of your team with and/or without staffers in the office or in the hallway in front of the name sign and the flag(s). This is good for the Instagram and it helps raise awareness about hill day events, the legislation that you’re discussing, as well as the advocacy group that you’re working with that day.
9. Is your boss here for a photo? This is perfectly acceptable question so don’t be worried about asking it. The answer is more than likely “no,” but you can ask anyway. Maybe the representative does have a minute for a photo but you won’t know unless you ask.
10. Jot down a few notes after the meeting. At the end of the day, remembering everything that went down for your report out is going to be a challenge. You will be tired. The meetings will run together in your head. Take a minute to make a note, whether on paper or even recorded into your phone as a voice memo to yourself, and 4PM you will be very thankful for it!
Have more questions? Hey, I might just have answers! Use this page to get in touch!