Adult Congenital Heart Association & Federal Funding

"Congenital Heart Defects are very different from “regular” adult heart problems. Experts recommend that those with complex conditions should receive regular care at programs that specialize in adult congenital heart care. But most complex heart defect survivors are currently cared for at centers with no special training in congenital heart problems," according to ACHA (Adult Congenital Heart Association).

Those of us with CHD are living longer but there is a national shortage of ACHD programs. Many of you have children with CHD. As they grow older they'll need special care to keep them going as long as possible. Ultimately, we are all in God's hands. But until then we should fight to live and enjoy this beautiful world. He wants that for each of us.

For a listing of national ACHD programs, click here.

FEDERAL FUNDING for RESEARCH
Since 2005 ACHA has been advocating for national efforts to address the life-long needs of the congenital heart community. On March 17th, 2009 the Congenital Heart Futures Act was introduced in the Senate by Senator Richard Durbin [IL] and in the House by Representative Zach Space [OH]. This bill defines congenital heart disease as a life-long disorder and calls for federal investment in congenital heart disease research and education and the creation of a national congenital heart disease registry. You can read the full text of the Congenital Heart Futures Act here. This bill is the first-ever legislation introduced to address the life-long needs of congenital heart patients. In order to follow this bill, please go to www.thomas.loc.gov. In the Senate, it is referred to as S. 621; in the House, it is H.R. 1570.

So what’s next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed into law. You can help move this forward by emailing your members of congress and asking them to sign on as a sponsor of this legislation. A sample email text to get you started is here. To find your lawmakers' emails, visit the House of Representatives (www.house.gov) and the Senate (www.senate.gov).

ACHA has worked closely with a legistative team at Patton Boggs to identify key targets in Congress. We need these indiviudals to support the bill. Sen. Hagan (NC), Sen. Bill Nelson (FL), Sen. Whitehouse (RI), Sen. Kohl (WI), Sen Milkulski (MD), Sen. Sanders (VT) and Sen. Schumer (NY). If you live in one of these states and are interested in making sure your legislators support the Congential Heart Futures Act, get involoved with a Local Lobby Day effort with ACHA by emailing info@achaheart.org.

You can also join other congenital heart patients, family members, and health care providers in in-person lobby currently being planned for this summer. More information will be available shortly. Need more information? Visit here