This year I attended the annual “Day on the Hill” with the Crohn’s and Colitis Foundation (the Foundation) in Washington, DC. It’s a two-day advocacy event where people who have been touched by inflammatory bowel disease (IBD), either as patients, caregivers, or healthcare professionals, meet with legislators and/or their staff.
That’s the postcard version: but let’s break this down so it makes more sense.
The Foundation has a list of advocacy efforts that it champions every year. These are usually certain bills that would protect care and treatment options for people with IBD and potentially other digestive diseases or chronic illnesses. In addition, there’s also usually a funding ask, so that more money is allocated to study IBD.
Want to get involved? I’d love for you to come to DC too but if you can’t, there’s plenty you can do from home. Get started with the Crohn’s and Colitis Foundation’s Advocacy Network. You can learn about the legislation, email your legislators, and do so much more.
We Tell Our Stories
What this means for attendees is that we go from office to office and meet either with healthcare policy or legislative policy staff members of congressional representatives and walk them through the bills. The way that we do this is by telling our stories of living with Crohn’s disease or ulcerative colitis. For instance, I might tell about how I was denied health insurance during the pre-Affordable Care Act days, or how long it took me to receive authorization for an MRE, or the months I went without treatment while my insurance company stalled and denied approval for my chosen therapy.
It’s not important that we, as patients and caregivers, are experts on the public policy. (Although I am learning.) We are there to tell our stories to the people that represent us in Congress. We are there as experts in how IBD affects us and how legislation can help.
Traveling Is Fun/Annoying
For me, this event means leaving my family for two days and taking an Amtrak train from my home in New England down to Washington DC. It’s not unpleasant: the train is more convenient than flying, for sure. However, it’s not without difficulties. This 2019 Day on the Hill is my third trip to DC since December 2018. So by now I know a bit about how to travel and where I’m going. I also know that the food on the train is not for me and unless I want to use the bathroom on a moving train more than a few times over the course of the 4 to 5 hour trip, I will need to limit food and drink. This trip meant missing work, of course, and trying to make up while on the train or later in my hotel room, but also the school art show and a field trip for my daughter.
When I got into Union Station in DC I had a quick bite to eat because I only do protein bars on the train (they got my order wrong, though, which is a thing that seems to happen to me a lot while traveling). With my luggage in tow, I hopped in a cab to head over to the hotel, which was not far in miles but still a half hour away. The meeting for the Day on the Hill attendees had already started: unless I wanted to be away for three nights, the timing meant I had to miss the morning sessions.
Once I found my team we could go over our strategy a bit in the afternoon and discuss how we would approach our meetings. We don’t know each other, by the way. We’re meeting for the first time the day before our meetings and thankfully, we get along swimmingly. Honestly, this is not always the case. I can find a way to get along with almost anyone, but I have had some personality clashes in the past that make the day a real struggle. My team this time, however, is astounding and we laugh a lot and take pictures for one another.
All About Our Day on the Hill
The next day we have a quick breakfast, get the folders that we will leave behind at the offices of the Senators and Congresspeople, and take an Uber to Capital Hill. Our first stop this year was the Hart Senate Building. I’ve been there before, so I’m able to lead my team to Senator Murphy’s office the first floor and then Senator Blumenthal’s office on the 7th floor. We have a meeting with a staff member, usually in a small conference room, and we do our best to tell them why their boss should support this legislation. And, honestly, these meetings are pretty easy, although that doesn’t mean that we aren’t nervous about them. We already know that Senators Murphy and Blumenthal are sympathetic to our requests, although they have not signed on in the past. We keep trying, however. We do our best to persuade.
My team next finds our way outside for a group photo on the Capital steps. Thankfully the rain that’s been plaguing the East Coast this spring holds off. We then head over to the House buildings where we meet with the staff of 3 different districts, because the folks on my team and I are from 3 different towns. First, though, we go down to the basement in the Rayburn building and find the cafeteria. It’s not too difficult to find, and I somewhat remember where it is from previous visits, but it still takes a few minutes to go in the right direction. The cafeteria is busy and for me, it’s a bit overwhelming to try to find some food and eat it quickly in a loud, bustling environment. All the bustle on the Hill is not really my cup of tea but it’s part of the process.
Once it’s time for our next meeting we fumble our way to the offices of Representatives Himes, Hayes, and Courtney. I say fumble because the office numbering is not as clear as it is in the Senate buildings. We get off the elevator on the wrong floor a few times before we find our way. By this time, my team has seen me lead three meetings and I push them to lead the last two.
It’s a Long Day
By 3:30, I am exhausted. It’s a lot of walking, but that’s not a problem for me: I walk, run, or cycle almost every day. It’s the meetings to tell my story and to ask, over and over, for our representatives to sign on to our requests or to become a member of the Crohn’s and Colitis Caucus. This is not something I have gotten used to doing, even though I’ve been to DC now more than half a dozen times. It’s not in my nature: I’d make the world’s worst lobbyist. I’m improving, though, and it does get easier every time. I practice my elevator speech and I also tailor it depending on who I’m talking with. Sometimes the health policy staffer may have a health-related degree and certain things I won’t need to explain, but then they may have more in-depth questions. Sometimes the staffer wants us to know the health policy legislation that their boss is working on, seemingly to get our buy-in. Every meeting is different, even when I’m talking with staff members that I’ve spoken to in the past.
On top of that, what’s going on that day or that week colors our meetings as well. On this day, Congress is meeting about the Protecting Americans with Preexisting Conditions Act. I hear, over and over again in meetings, how it’s going to be challenging to enact new legislation when what we have is still under attack. They just don’t have time to make change when they’re spending all their time putting out fires. It puts me a bit on edge because I’m already tired of fighting to keep the basic protections we have. I want more for myself and for those I love that live with IBD and their families.
And Now for Transparency
There’s obviously a lot more to the day and how it all works out. The Foundation puts in a significant amount of work to schedule all the meetings and help attendees with their needs. It should be noted that part of my travel expenses were covered, but not all of them. That means that some of this trip was at my own expense. I’m privileged to be in a position that I can do this but aside from leaving my family, traveling, and taking on work that I find challenging, I’m also funding part of it myself. This is not a complaint; I feel it’s important to be transparent about the realities of my activism. Yes, there’s a lot of selfies taken for the Instagrams, and I’m sure it looks like we are having fun and we do for some of the time, but it’s also real work that gets done and there’s a real cost to it.
The Ride Home
Traveling home is about the same as traveling to DC. There are the little annoyances that go along with any type of travel. I get an Uber to Union Station and have a bite to eat (my order is wrong again and I live with the heartburn that comes along after) and grab a cup of coffee and wait for my train. Union Station is beautiful but it’s challenging because there’s no place to sit while you wait for your train to be assigned a track and there’s a mad rush to get in line to board.
When I get home there’s lots of follow-up to be done. Part of these legislative visits includes getting the contact information for all of the people I met with and emailing them or connecting on LinkedIn. We want to know what our legislators are thinking about the bills and if they’re going to co-sponsor them. Building relationships is important and ongoing, especially as I go back to visit these offices in the future either about the same bills or about new ones.
I never expected to do this type of activism with healthcare but now that I’m in it, I plan to keep on attending Day on the Hill events. I’ve never written one of my visits up before but I felt that it was important to start doing so because I know these events seems like a complete mystery when you’ve never been to one. Going to DC and meeting with the staff for legislators is something everyone should have the experience of doing at least once. Don’t shy away from attending an event at DC either as a patient with IBD or for another reason, it’s well worth your time.