The Importance of Ongoing Advocacy

Much like the need for lifelong care for those of us with congenital heart disease, so too is the need for ongoing (lifelong, perhaps?) advocacy for our cause. As many of us “insiders” know, despite being the #1 birth defect, CHD is significantly underfunded; and the general public is often unaware of who we are and what our unique needs are.

When people hear about meeting with their elected officials on Capitol Hill (whether you call it lobbying, advocating, or whatever), it can, unfortunately, bring a variety of unsavory images to mind—big money lobbying firms, power brokering, political corruption, backhanded deals, House of Cards, etc.

But as a veteran of the Congenital Heart Legislative Conference and Advocacy Day, one of the things that sticks out most to me with this annual event is the truly genuine, grassroots-style, and (pardon the pun) heartfelt approach that it takes to use our collective efforts in order to influence the allocation of taxpayers’ dollars to a very real and pressing public health issue.

Like everyone who was there, I have my own story to tell, and I have shared it each time I’ve sat in meetings with elected officials or their staffers. But to paraphrase my fellow ACHA blogger Stephanie Hodgson, we must keep showing up! It is so important to continue building on the momentum and successes of this event each year.

Personally, I have made this annual event a priority. 2016 marks the fourth year that I have attended. I had the privilege this year of advocating alongside a parent and her teenage daughter, a fellow CHD survivor and a newcomer to the world of advocacy—but you’d never guess that by sitting next to her in a Congressman’s office. She was a natural!

The first year I attended (2012), I successfully got my own Representative to join the Congressional Congenital Heart Caucus. The second year (2013), I had a vacation planned right before the event, and I landed in D.C. directly from Dublin, Ireland, the night before the conference began (well, more like very early in the morning on Day 1). I “selfishly” took a break in 2014 as I was recovering from my PVR surgery (an excusable absence, perhaps). And in 2015, I had the honor of speaking during the opening presentation to share my story and the importance of advocacy from an adult patient’s perspective.

The week following this year’s Congenital Heart Legislative Conference was CHD Awareness Week, and it was quite exciting to see so many of my fellow CHD warriors, family members, and friends fill social media with personal stories, facts and figures, and information on how others could get involved in supporting the cause and raising awareness. While the conference and awareness week are absolutely necessary, we cannot simply limit our efforts to just these, or other, annual events. And just as our own personal CHD journeys are ongoing and continuous, so too must our advocacy efforts be.

Much like in philanthropic fundraising (my day job), the relationships built during a single congressional meeting or advocacy event must be cultivated over time to maximize the impact of those connections. And in both cases, it is not only to obtain the desired financial resources, but also for the increased awareness of our cause. While CHD is obviously a very personal issues for those of us directly affected, it is also a much larger public health issue with real economic impacts. So it’s definitely not just us “insiders” who are affected by our advocacy work.

To my fellow CHD warriors and friends who I have consistently seen at this event—and to those newly joining us—thank you for showing up! Our journey together continues.