Lobby Day is getting closer!

It’s getting closer!

National Congenital Heart Lobby Day 2009 is getting closer, the informational packet arrived this week. There are some forms that need to be faxed in (Special Assistance Request, Photographic Release, etc.) and the rest of it is directions and the schedule.  I’ll fax the forms, add the packet to my travel folder, and be that much closer to being ready.

I’m still not convinced I’m going to be able to liveblog or Twitter from Lobby Day so I’m working on an alternate plan. More information as that develops. (My Twitter name is funkyheart, feel free to follow me!)

On Lobby Day, members of various Heart Defect support groups plan to visit our representatives on Capitol Hill in support of a National Heart Defect Registry. At least 78 people have registered, and that information is a month old. There are certain to be more! When we did this the last time (2007) 30% (or more) of the attendees were Cardiologists! So this isn’t just some idea that a bunch of CHD folks are trying to get passed.

The National Registry would be a researchable database of patients with a Congenital Heart Defect, maintained by the National Institutes of Health. Obviously, the treatments with more positive results would quickly become apparent.  And the more patients that can be included, the better.

Imagine a computer with access to the treatment paths of  nearly two million Heart Defect Survivors. Your Cardiologist sits down with you and says “Your Left Atrium is still enlarged. The Heart Registry says 83% of patients get a relief of symptoms if we adjust their medication, so that’s the plan. But I will warn you, for the 17% of people that this doesn’t work for… most of them need surgery inside of a year.”

A sour look crosses your face as you think about the possibility of more heart surgery.

“Are you exercising?” The doctor asks. “The Registry also says that if you exercise three times a week, that 17% chance goes down even further. If I were you, I’d start looking for a good health club.”


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