Fight for your rights

An article abstract I found this morning seems to fit in with our previous post. This report notes that from 1998 to 2005, the number of adults with a Congenital Heart Defect (CHD) being hospitalized rose 67%. Thankfully, the inpatient mortality is going down, but the cost of care is going up – to an estimated total of 3.1 Billion dollars in 2005.

$3,100,000,000… I think it might be time to take up a collection!

Obviously, medical technology is working – heart defects are not the death sentence that they once were. We can almost be considered a Chronic Illness: with proper management, we can live full lives.

In a way, it’s a good problem to have: Even though we’re still fragile, more of us are leaving the hospital and going back to our lives. But Heart Defects have never been recognized as a Chronic Illness. Even though CHDs are the number one birth defect in the United States, it’s still seen as “one of those sad things that happen every now and then.”

If you want something done right, you need to do it yourself. That’s why it’s up to those of us with Heart Defects to get the Congenital Heart Futures Act out of committee and passed. It has been laid aside as the Health Care Reform debate rages; so it’s up to us to get it back to the forefront. We may have to wait until the Reform debate plays out, which means that the bill could die in committee. If that happens, we have to reset, reload, and try again. Make your plans – we could be heading back to Washington. But if that is what it takes, we’ve got to be willing to get back in there and fight for it.

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One Response to “Fight for your rights”

  1. Amy Says:

    Thanks for the update Steve! I agree – we all have to band together to get CHD recognized as a chronic disease. With the practice of medicine changing every day, it is important to stay on top of this stuff!

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