Saturday, February 28, 2015

Humility on the Hill

Earlier this week, I spent two days with over 130 amazing CHD advocates from across the country who came to Washington, DC, for the Congenital Heart Legislative Conference (known previously as Lobby Day and Advocacy Day). Co-hosted by the Adult Congenital Heart Association, the Pediatric Congenital Heart Association, and The Children's Heart Foundation, the conference informed and prepared its participants to advocate for congenital heart disease awareness and funding on Capitol Hill.

Our specific request to Congress includes three key components:
  1. Provide $10 million in FY2016 to the Centers for Disease Control and Prevention's National Center on Birth Defects and Disabilities to support surveillance and public health research to build upon current activities to better understand the public health impact of congenital heart disease across the lifespan.
  2. Support the National Institutes of Health's efforts to develop innovative and cost effective treatment options for those living with congenital heart disease.
  3. Continue robust funding of the Department of Defense Peer Review Medical Program to help lessen the disparate research funding of the most common and costly birth defects.

As a veteran of this important annual event, I had the distinct privilege of speaking during the opening keynote presentation, specifically addressing the importance of advocacy from the adult patient perspective. Since becoming involved in the CHD community in 2011, I have shared my personal story—both privately and publicly—dozens of times. But having the chance to tell one's story on Capitol Hill is especially important.

I have been told by a number of people that my story has given them hope that they or their children might actually be able to grow up to live long and "healthy" lives with CHD. I am always so happy to hear this, and it's true that more and more babies born with CHD are living well into adulthood. Unfortunately, though, this is not universally true. Not only is CHD the most common birth defect, it is also the leading cause of birth defect-related infant mortality. And sitting in a Congressman's office with a young couple who tells their story about losing their baby to a congenital heart defect is an experience not easily put into words.

Being surrounded by so many other passionate advocates is simultaneously humbling and so empowering, and I love meeting people in the CHD community. Their passion is palpable, and their frequent willingness to share such personal details from their lives offers an immediate connection not typically seen in other social circles.

Yes, I clearly enjoy advocating for CHD and speaking publicly about this intensely-personal issue. And I am so grateful for, and humbled by, the amazing feedback I've received from others. But I hope you know that you, too, have inspired me just as much. It is only through our collective efforts that we will continue to bring about the important changes that are needed.

Our journey together very much continues.