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A week and a half ago, I went to Washington, D.C., to participate in the Digestive Disease National Coalition’s Public Policy Forum. I had planned to follow up with a recap post right after, and I left the forum informed and energized and full of plans to take what I’d learned and done and keep those balls rolling forward.

And then I left the Senate building and ran for a train, then a bus, then a plane, then another plane, and got home at midnight, and nursed a baby at 3am, and went to work at 8am, and spent the next week trying to catch up, and now here we are….

Honestly, I probably would have shared something earlier, but as I think back on my whirlwind trip to D.C., it’s a little overwhelming just figuring out where to start. I spent all of Sunday afternoon hearing presentations from people who know an awful lot about obstacles to care that I have only barely scratched the surface on, or that I have experienced but didn’t really have the terminology to put in a broader context, and about other things that have to do with other diagnoses entirely but were eye-opening when it comes to important health issues that can impact all of us; and then I spent all of Monday having conversations and connecting dots and figuring out how to share our story in a way that matters and trying to sort out where my efforts go next; and I left wanting to share ALL the things all at once because it’s so important and people’s lives literally depend on it and WE can be the ones to make a difference!

But also, well, it’s a LOT to digest.

So I’m going to step back and hit pause on trying to regurgitate all the information I gobbled down and half-absorbed in a span of less than 36 hours. If I’ve learned anything over the last few years, I know that large quantities are easier to digest if they’re spaced out over time and appropriately chewed over….so I’ll give all that info some breathing room.  

What is useful right now, I think, is this: If you’re thinking about doing something like this, whether it involves traveling to D.C. or meeting with your lawmakers locally or even just picking up the phone for the first time, DO IT. Your story matters. Your voice can make a difference.

If you’re following along because you’ve considered participating in something similar, or you found this blog because it’s now January 2020 and you’re debating whether you should register for the DDNC Public Policy Forum and want to know more about what it’s all about, here’s how it went for me.

I got in to D.C. on Saturday evening, which turned out to be perfect timing for two reasons:

I had time on Saturday night to walk by the White House all lit up after dark, and – more importantly – to put this in my belly.

Yes, I did eat the entire thing. I regret nothing.

It also allowed me to spend all of Sunday morning doing a walking tour of the major monuments before the forum began. I mention this because it became an important part of my experience there: right before I participated in a concentrated effort to make our voices heard so that we might shape our nation for the better, I spent four hours immersing myself in monuments to people who gave literally everything to help shape our nation for the better, and to protect my right to make my voice heard. I’d never been to D.C. before, but even if I had, it was an incredibly poignant way to kick off the forum.

Sunday afternoon involved a series of presentations from physicians, patient access advocates, and industry representatives who spoke about things like current research and funding, obstacles to access like step therapy and non-medical switching, and the highlights of the DDNC’s legislative agenda (you can find more detail about their legislative agenda here).

I also met some other people who were there through the Oley Foundation, including a member of the Oley staff who was absolutely key in my attending the DDNC forum at all, as well as some parents who are among the very small group of people who can truly understand what we have been through with L. I was able to talk freely about our journey without stopping to explain anything, in a way that I have very rarely been able to do, and with people who don’t bat an eye at talking about some of the less pleasant facets of digestive disease – a whole group of people who think it’s perfectly acceptable to talk about vomit and poop while eating breakfast! My people.

And, on Sunday, I finally found out who I’d be meeting with on Monday.

This day was useful for helping me contextualize some of the obstacles we’ve run into and providing some language to use to help connect our experience with current policy issues, and it also provided an opportunity to connect with people and organizations that can provide resources for me as a caregiver and can help me continue and hopefully expand my advocacy efforts (for example: you can go here to share your story about obstacles you’ve faced regarding coverage for medical foods, like enteral formula).

On Monday, we reconvened for another brief overview of the highlights of the DDNC’s legislative agenda and got together with our teams to learn each other’s stories and talk strategy. My team was a pretty well-rounded group: me, an adult patient who relies on enteral feeds after a difficult battle with throat cancer, the president of the United Ostomy Associations of America, and a GI nurse whose job in part involves colorectal cancer screening. The DDNC tries to group people based on the state they live in so they can try to arrange meetings with the appropriate lawmakers, but there aren’t a lot of participants from the great state of Missouri, so our little group represented Maine and Delaware as well.

I was a little nervous leading up to Monday, partly because I didn’t know who we’d be meeting with until the day before, and mostly because I’d never done this before and didn’t know what to expect. But I felt much more equipped to steer these talks after the Sunday information sessions, and one of the members of our group had participated in similar forums many times (I think this is probably true of most of the groups there that day), so she led the way at first, and we had a really lovely conversation at the first office we visited. The aides we spoke with seemed genuinely moved by the stories we told, and after the first meeting my team kind of found a groove and the words flowed more and more easily as the day went on.

We met with a total of 8 offices – none of the actual Senators or Representatives, but with their aides and health care advisors, who on the whole seemed very engaged and well-informed about the issues we discussed. Our conversations were brief – anywhere from 10 to 25 minutes, which meant we needed to present our stories in a focused way that really got to the heart of the issues (I had practiced the night before, because, as you may have gathered, being concise is not my strong suit….). After the first couple of meetings, though, we had our elevator speeches down, and by the end of the day we were even talking about facets of each other’s stories, weaving a bigger narrative about the way these issues impact all of us.

One useful tidbit I’ll leave here is a piece of advice from another mom who’s had a lot more experience on the Hill than I have: Bring a simple handout you can leave with the legislator or aide. The DDNC provides a folder of information to leave behind, but it’s, again, a lot to digest, and it’s focused on the policies, not the patients. I brought with me a half-sheet handout with L’s picture, a very basic summary of his health journey, and a simple list naming specific legislation we’d like them to support, to help connect real people with the policies at hand. If you’d like to create something similar, mine looked like this:

And of course, I can’t post this without including the mantra of the weekend: Wear comfortable shoes. You’ll be doing a LOT of walking.

I came away feeling, like I said above, informed and inspired and energized, and I’m looking forward to the promised follow-up from the DDNC with advice about how to keep these conversations going. I took along photos of L to share in our meetings, but I’m hoping to go back next year and actually take L with me – I want to keep being an advocate, and equally as important, I want L to see me being an advocate, and know that he has a voice too.

Maybe we’ll see you there?