Advocating for Crohn’s Disease on Capitol Hill

At a health conference a few years back, I was fresh off the hill. Capitol Hill, that is. I was feeling pretty spiffy about my new-found change-making abilities. And then it happened — I met a party pooper. The party pooper and I had assigned seats. During an ice breaker exercise, the party pooper asks their question and I replied about how I participated in a lobbying effort.

This is when the party pooper flatly replied, “Oh, you went to a day on the hill thing.”

My happy bubble rapidly deflated.

The manner in which she said, “day on the hill thing,” made the effort feel less than. And in turn, I felt less than. Clearly, the statement made a lasting impact if I’m writing about it a few years later.

Here’s the thing, it was an incredibly hard day for me physically and emotionally. I collapsed in pain from swollen arthritic joints, two days into my trip. The fact that I was able to accomplish the agenda was a big deal to me. As someone who was only a couple of years into walking with unbearable swelling and pain in their feet, it was a big deal. But I digress.

Participating in "Day on the Hill" events

As I write this, I am yet again, fresh off the Hill. I have not let that person’s words deter me from participating in “Day on the Hill” events or other advocacy efforts with Congress.

In case you’re curious where I’m going with this whole thing, here comes the important part!

You too can advocate for Crohn’s disease and ulcerative colitis, and healthcare policy, and so much more.

Political advocacy for Crohn's and UC

A “Day on the Hill” trip is the perfect way to dip your toe in the political advocacy pond. Foundations involved in healthcare policy typically hold their “Day on the Hill” around the same time every year. This is also a great way to get familiar with a foundation or coalition (a group of foundations working together).

Sometimes it can cost you money. So, please keep that in mind. Upon selection, there will be times your hotel and airfare are pre-purchased for you. Other times, you will have to pay and get reimbursed. You may not get reimbursed fully, either. Sometimes, a stipend is involved. For example, one event I attended had a stipend. The stipend was small and only covered my airfare. I was responsible for food and hotel. So, I set up a campaign online to source funding for the hotel room, cab, and food. The hotel was almost $1000 for three nights. The money raised helped cover the hotel. We stretched every dollar as far as we could by having 3 people with Crohn’s disease and ulcerative colitis share one room.

We did survive and are still friends.

Expenses for food and cab fare can add up quickly while there. My best tip is to read travel reviews from people who have stayed at the hotel you’re going to stay at. I did that and found an inexpensive deli, which serves great food, coffee, and snacks. I’ve gone back there many times since discovering it.

Here’s what you can expect when attending a "Day on the Hill" event

Groups of attendees from the same region or state form teams. Then, as a team, you will travel throughout the buildings that house our Representatives and Senators. There will be a briefing and training session, where the organization hosting the Day will inform you more about why you are there. You will ask something of the Congress member, so it may be referred to as an "ask."

The “ask” may be about a new piece of legislation or one waiting for a vote.

Your group receives assigned time blocks to meet with the offices of Senators and Representatives. Don’t be discouraged if they are not there. Most often you are meeting with their aides who take the information back to their bosses and inform them of what they missed. Sometimes, the congressional member is there and they will take the meeting with your group or part of it. They will almost always ask for a photo op. Politicians love photos with constituents.

Your job is to relate the “ask” to your story and emphasize its importance. This past week, I was not there for a “Day on the Hill.” A foundation I volunteer for had a Senate bill for Step Therapy drop. Our meetings were to help get additional support for when the bill comes up for a vote. During our meetings, we met with two Representatives and their aides. The senators were not in their offices, so we met with their aides. During these meetings, we shared our stories and how Step Therapy had negatively impacted our lives. And we provided supportive information pertaining to a report that showed how Step Therapy can cost insurers more money in the long run.

After the meetings conclude, you will follow up with the aides via email. Opening this dialogue helps establish a relationship with the Congress member’s office. Should you have another opportunity to travel back for more advocacy or personal reasons, you now have an established relationship.

Lastly, there is a lot of walking when advocating on Capitol Hill. If you have mobility issues and think you might need a medical device to assist, there is help. Call the hotel you will be staying at and ask if they have a preferred mobile device vendor or suggestions. And when in doubt, ask the Internet.