Making a Difference Nationally and Locally

Advocacy Day 2013—formerly known as Lobby Day—in Washington, D.C., was simply amazing! As many people know, this annual event, co-hosted by the Adult Congenital Heart Association and Mended Little Hearts, brings volunteers from across the country to Capitol Hill to advocate for congenital heart disease awareness and funding at the federal level. Everyone who attends it comes away with his or her own story of excitement, accomplishment, and admiration. And I am no different.

But what was most impressive to me this year (only my second year attending the event) were the overall numbers:

• More than 100 volunteer advocates attended.
• More than 26 states were represented.
• More than 120 legislative office visits were held.
• At least 9 new House members joined the Congressional Congenital Heart Caucus.

Only a month ago, the Caucus had a total of four members. Our one-day visit to Capitol Hill more than tripled that number (and there may be even more Representatives signing on in the near future)! I personally have not seen such an immediate result of grassroots action like this before. The CHD community should be proud of its collective efforts, and I was so pleased to be a part of it!

Following last year’s Advocacy Day—at which I successfully got my own Congressman to join the Caucus—I received a number of questions from fellow advocates asking how I had done it. “What’s the trick?” many would ask. “How can I do it myself?” As a newbie last year, I really didn’t know what I was doing any more so than any of the other volunteers who attended. I simply followed the guidelines and suggestions provided by ACHA and MLH and told my story (no pun intended) straight from my heart. To my surprise, it worked! Fortunately, I have been able to continue cultivating the relationship with my Congressman over the last year in order to keep him engaged and aware of our efforts.

But the work doesn’t stop there. While we went to Washington, D.C., with a collective voice, there is still much on-the-ground work to do in each of our own backyards. The availability of and access to ACHD care is not universal, and many adult patients are either lost to specialized care or simply unaware of their options. In Chicago, a group of ACHD cardiologists have come together to create CATCH—the Chicago Adult Congenital Heart Network—a patient-centered, inter-institutional network established to ensure that all adults with CHD in the Chicago area are receiving the appropriate follow-up care.

As the patient representative for CATCH, I have the opportunity to work with some amazing doctors—recognized ACHD specialists who are not satisfied with the status quo. These medical professionals saw the data and realized that a great deal of work must be done to get more adult CHD patients into the proper care. Working in partnership with ACHA, CATCH envisions a day when the Chicago region—with its multiple leading hospitals and ACHD clinics—is providing all ACHD patients in the region with the care they need. Ambitious? Yes! Impossible? Only if we give up!

I have referenced this quote in the past, but I think it is completely appropriate to do so again here:

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” —Margaret Mead

At both the national and the local levels, the CHD community has proven Margaret Mead right multiple times. But in order to ensure our future success, doctors, parents, and patients must continue to work together to challenge and to change the status quo. We owe it to ourselves and to each other to do what we know is right in—and for—our hearts!