Stand and be Counted

Well it is official – I am registered to participate in the Adult Congenital Heart Association’s (ACHA) Lobby Day 2009! During my first Lobby Day (2007), it was Just ACHA members (patients and health professionals) with assistance from the American College of Cardiology (ACC). The ACC sponsored the event and provided us guidance on how to approach a lobbying effort. The ACHA has no professional lobbyists; if we want something done, it’s up to us to do it!

There were 74 ACHA members from 19 states, and we were able to visit the offices of 83 of our legislators. The issue we pressed was the creation of a national registry of Adult Congenital Heart Defect (ACHD) patients. By gathering and studying information on adult survivors of CHD, better treatment options can be developed that will benefit everyone with a Heart Defect and allow all of us to live longer, healthier lives.

We won the battle, but lost the war. The Registry was inserted into the Federal Budget, but political moves delayed passing the budget until almost the last possible moment. When it was finally passed, the budget had been “stripped” – most of the extra spending (including ACHA’s request for the Registry) had been deleted.

That was two years ago – before ACHA helped create the National Congenital Heart Coalition. I don’t really know what to expect this time. Members from other groups in the Coalition will almost certainly join us, and I assume (and we all know what can happen when you assume things) that our focal point of our efforts will be passage of the Congenital Heart Futures Act. During our interview, ACHA President Amy Verstappen told me that the Act was still a work in progress. I have not seen a copy of the Act, and by the time it is ready to be submitted, that may not even be its title.

So what can you do? If you are an adult with a Congenital Heart Defect, join ACHA. Membership is free to patients and their families, and if possible prepare to join us in Washington. If you are a Heart Mom or Heart Dad, ask your local CHD support group if they are members of the National Congenital Heart Coalition and if they want their members to attend Lobby Day. If they say no, ask them why not? Ask your group leaders to get in touch with the ACHA main office (the phone number is on the website; go to the bottom of any page) and request information about joining the Coalition and attending Lobby Day 2009.

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