Section 425(C)

Here’s the text of the Congenital Heart Disease (CHD) provisions in the Patient Protection and Affordable Care Act (H.R. 3590). This link leads you to THOMAS, the website maintained by the Library of Congress that has the most current legislative information available. It is the actual text of the new law, not someone’s interpretation of What It All Means. The three sections that affect CHDers are Section 10411, Section 399-V2, and Section 425.

The new law will create a Congenital Heart Disease (I usually say “Defect”) Surveillance System – this is the “Registry” that the Adult Congenital Heart Association (ACHA) has campaigned for, including Lobby Day efforts in 2006 and 2007 before joining forces with seven other CHD groups as part of the National Congenital Heart Coalition for Lobby Day 2009. It also gives the Director of the National Institutes of Health (NIH) the power to “expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease…” including the causes of CHD, eliminating barriers to life long care,  and studying long-term outcomes of those with Congenital Heart Disease.

But the most important clause in the Congenital Heart Futures Act is Section 425 (C). Only 32 words long and making up less than two complete lines of text, everything hinges on 425(C):

Authorization of Appropriations- There are authorized to be appropriated to carry out the amendments made by this section such sums as may be necessary for each of fiscal years 2011 through 2015.

In other words, the Act is authorized but not yet funded. Why are we going to travel to Washington and hold yet another Lobby Day event when the bill has already been passed and is now law? Because of Section 425(C).

And that’s why we need you to join us in Washington on April 22, 2010 as we work to secure the funding that the Congenital Heart Futures Act needs to come to life. Right now, it’s just words on paper – you can help turn it into a reality! Register to attend Lobby Day 2010 and help to defeat Congenital Heart Defects! (ACHA is maintaining the registration link on their website; registering does not obligate you to join the group… but we would be happy to have you if you did!)

And we’ll have to go back next year. And the year after that. And we’ll have to come up with new legislation to take effect after 2015, when the Act expires and everything grinds to a halt.

But I’m not worried; we’ve all been here before. It takes a lot of patience and the ability to focus on the long term goal to live with a bad heart, or to be the parent of a Cardiac Kid.

We’ve got the stamina… and we’re in it to win it!

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2 Responses to “Section 425(C)”

  1. What is a Health Registry? « Adventures of a Funky Heart! Says:

    […] What is a Health Registry? By Steve Before Adventures of a Funky Heart! began I took part in Lobby Day 2007, sponsored by the Adult Congenital Heart Association (ACHA). This was my very first Congenital Heart Defect (CHD) Advocacy effort, traveling to Washington DC to meet with other adult CHD Survivors and to lobby Congress for the passage of an National Adult Congenital Heart Defect Registry. Now, three (almost four) years later, we have one – but it exists only on paper. […]

  2. Heart Defects and the 2010 Midterms « Adventures of a Funky Heart! Says:

    […] funded either. In an ironic twist, the sections dealing with Congenital Heart research and funding never were funded to start with. We wouldn’t have lost anything, because we never had anything to start with. Just words on a […]

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