National Congenital Heart Coalition Lobby Day 2009

Lobby Day Efforts Just the Beginning; Help Still Needed
- By Anne Gammon       

National Congenital Heart Lobby Day proved a successful kick off for the first joint undertaking by five of the seven National Congenital Heart Coalition (NCHC) groups. The mission of the day was securing co-sponsorship in the House and the Senate for the Congenital Heart Futures Act, which seeks increased research, surveillance and education regarding CHD. To read the bill in full, please click here.

On Lobby Day this year, a total of 122 legislators in the House and Senate were visited by the 198 participants, who represented 28 states. Of those that gathered in Washington, DC, on February, 10th, 173 were CHD patients or family members and 25 were healthcare providers. Participants represented national CHD groups from across the nation, including not only ACHA, but the Children’s Heart Foundation, Congenital Heart Information Network, It’s My Heart, Mended Little Hearts, as well as several local groups.

The CHD Lobby-ers were successful in gathering support of the legislators and The Congenital Heart Futures Act was introduced by Senators Richard Durbin and Thad Cochran in the Senate and by Representatives Zachary Space and Gus Bilirakis in the House of Representatives in March of this year. To follow the status of the proposed bill and its co-sponsors, please go to In the Senate, it is referred to as S. 621; in the House, it is H.R. 1570.

Your help is still needed!

Summer lobbying for the Congenital Heart Futures Act is coming, relying mostly upon e-mails and phone calls from individuals passionate about the need to improve the lives of those with CHD. If planning a trip to the Washington, D.C., area, consider scheduling brief meetings to discuss the bill with your representative and senators. Or, if you are staying home this summer, plan to visit your local legislators' offices to encourage their support of the Act. If you would like to join others in reaching out your legislators, email to get connected with the summer Lobby efforts!

A View of Lobby Day from Steve Catoe, ACHA member with Tricuspid Atresia

Lobby Day 2009 was, for the first time, not exclusively an ACHA event. ACHA was coordinating with other Congenital Heart Defect groups to press for introduction of the Congenital Heart Futures Act, a bill that would authorize a federal registry of CHD patients, increased funding of Heart Defect research on all levels, and a national level CHD educational program coordinated by the Centers for Disease Control. Our combined efforts brought more than 200 Heart Warriors, parents, and Cardiologists to DC to fight for our cause.

At first I was disappointed that something as simple as a hernia was going to keep me from participating in Lobby Day 2009, but it turned out to be for the best. Rather than lobbying my Senators and Representatives, I stayed at our "headquarters" and blogged the event.

That gave me the ability to see Lobby Day as a happening, not just from the limited view that I would have had if I had been out lobbying. By being in contact with our lobbying teams through my cell phone and by talking with them as they came back to the Capital Hill Club, I was able to see all the parts in motion, so to speak. It also gave me a better understanding of just how dedicated we can be. ACHA members may not have felt at their best, parents may have had a difficult time leaving their children, and the doctors certainly gave up a day's worth of work to take on Washington... but they did it anyway.

Visit Steve's two blog entries about this: From A Distance and Thoughts from 2,000 Feet.