By Michael Pernick
20 Feb

One Small Pebble

Friday, February 20, 2015

In what has become an annual tradition for me, once a year I travel down to Washington, D.C., to spend a day talking with my legislators on the Hill about why additional support for CHD is critically important. We all know the talking points—heart defects are the most common defects, one in 100 babies are born with a defect, yet we have no surveillance and tracking for children as they age, and the vast majority of adults don’t get the care they need.

And the government plays a critical role in helping to change that. With National Institutes of Health grants, Centers for Disease Control and Prevention surveillance programs, and national awareness programs, we can start to move in the right direction. But it is not easy.

That’s why I love my annual trek to D.C. for the Legislative Conference (or Advocacy Day or Lobby Day, as it has been called in the past). I don’t love it because I enjoy the experience (I do), and I don’t love it because it is a great chance to reunite with old friends (it is). I love it because it works.

Elected officials and their staffs are constantly bombarded with requests for money and support from lobbyists, wealthy donors, special interests, and other politicians. It is rare for them to meet with groups of doctors, patients, and caregivers all at the same time, who all tell them the same story.

One small pebble can start an avalanche. We’re not at an avalanche yet, but we’re starting to see a lot of pebbles making moves. It is because of the hard advocacy work of members of the CHD community that we have enjoyed our successes over the past few years, from the passage of the Congenital Heart Futures Act, to increased funding for surveillance, to a rapidly expanding congenital heart caucus.

For those of you traveling to D.C., I’m looking forward to seeing you next week. But the work doesn’t just take place there. Every member of Congress has district offices, and there is certainly one close to you. Here is some information we’ll be sharing on the Hill, and ACHA will be providing more info about how to go about participating and sharing in your own community next week.

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