Heart Defects and the 2010 Midterms

With the recent victory by the Republican Party in the 2010 midterm elections, another, larger issue looms: The Republican Party ran on the promise to repeal the Affordable Care Act and replace it with other forms of health care reform. If they can’t do that (And most likely they can not), they will refuse to fund it. And with Republicans in control of House of Representatives – where all bills that allocate money originate – this is a threat they can make good on.

This is not good news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, there goes the Congenital Heart Futures Act. And if it is unfunded, the Congenital Heart provisions won’t be 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 piece of paper.

Tell George Washington that the Declaration of Independence is just words on a piece of paper, and let me know how that goes for you.

We can go to Washington, meet with our legislators, and request funding, but there is no guarantee. Every other worthy cause will also be in DC, trying to make sure that they get their money, too. And since we were never funded in the first place, that puts us way down on the list. After all, if we never received any money at all, there must not be much to these heart problems. If it were serious, we’d be throwing cash at it! (They don’t call it an invisible disability for nothing, folks!)

The new legislators won’t take office until January 20, 2011, so we have a little time to prepare. We can’t really prepare a strategy yet, but we can get set in our minds what we are working for.

This isn’t a party issue. It is not Republicans vs. Democrats. People of all political walks have heart defects – an unborn child’s heart begins to develop early, and often the heart is forming before the mother even knows she is pregnant. This doesn’t benefit this side or that side, it benefits people. Because a house divided cannot stand, and a house united cannot fall.

This isn’t for us. This is for our children and their children. This is for the parents who sit in the Intensive Care Unit and fear that their child’s next breath may be the last one. This is for those who have to live with medication, scars, blood draws, and the knowledge that they are different, outsiders, alone.

A lot of people believe that Conservatives and Progressives are so far apart that they can’t even order lunch together. I choose not to believe that. I think we can all work together to bring Congenital Heart Defects under control and eventually condemn them to the dustbin of history.

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3 Responses to “Heart Defects and the 2010 Midterms”

  1. Nathan Says:

    Dear Steve,

    I can’t believe there are no comments yet!!!

    You are an amazing activist. Anger and frustration can contribute to progress. But also a very clever and deft approach and understanding of the process of legislation. Obviously, the ACHA did not prepare adequately for the issues associated with their approach or rather, the possible outcomes.

    Given that the Congenital Heart Futures Act was initiated and drafted by Dick Durbin — a great Chicago Democrat and long-term friend of Obama whose daughter died at 42 of CHD just prior to Obama’s Presidency — I can’t believe that it was “buried” in the Affordable Health Care Act. Like so many legislative initiatives, the hope for CHD was buried with many all other health care as if it were “general” health care — like being a 25 year old daughter needing her leg fixed after a skiing mishap — and it being covered by “Obamacare”.

    Durbin should have known better — and he was the one who knew — not the folks at ACHA who were at the time still neophytes in Washington politics.

    Nonetheless Steve, you have illustrated the continued vagaries of health care funding and legislative dysfunction in America, and of the recent serious compromise to all of us and our families who endure the lifelong demands of congenital heart disease.

    Thank-you for being so frank with us. And god hope that those parents who are now struggling with their infants with CHD will grow to understand that it is a lifelong illness — not repaired, not solved, and not cured. And like Dick Durbin’s daughter, their children might die at 42. It’s still too young, right Steve? Durbin should have done more. And the ACHA should get up to speed.


  2. Nathan Says:

    Dear Steve,

    I hate so much to be so direct, but who pays for your care? It must cost so much for the docs in Atlanta, and I know who don’t have Obamacare, so who pays for all of this? It’s soooooooo, sooooo expensive.

    This note is meant to be posted anywhere. Just asking.


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