Statements on Introduced Bills and Joint Resolutions

Floor Speech

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Mr President, every 15 minutes in America, a baby is born with a congenital heart defect. Many of these congenital heart defects are simple and can be easily corrected. Others are complex; some can require a lifetime of specialized medical care.

If you want to know what fear and powerlessness feels like, imagine being a young parent, listening to a doctor tell you that your new baby--who appears so perfect to you--has a threatening heart problem.

Fortunately, congenital heart defects aren't as deadly as they once were. In the 1950s, only 20 percent of American babies with congenital heart defects survived infancy. Today, 90 percent survive. Many children born with serious heart defects grow up to be adults with active, productive lives.

That progress didn't happen by accident. It happened because Americans made a decision in the 1960s to reduce these mortality numbers. We invested in research that led to better understanding and better treatments of the heart, from infancy to old age.

That investment in research has paid off in many ways. Some heart conditions that used to kill adults quickly often are managed now with medications and life style changes. The number of Americans with congenital heart disease living full, healthy lives increases by about 5 percent every year. About 2 million Americans are living with congenital heart disease today. We have come a long way--but there is more that we can do.

We know that the sooner a baby with a congenital heart defect is diagnosed and treated, the better the chances are to live a long and healthy life. But, the Centers for Disease Control and Prevention estimates that 30 percent of babies with critical congenital heart defects aren't diagnosed in the first few days, when treatment is most effective; 1 in 200 babies die from complications that might have been avoided if their heart disease had been detected.

In 2009, I introduced the Congenital Heart Futures Act to study people of all ages with congenital heart disease and coordinate research. That bill expired this year.

Today I am introducing the Congenital Heart Futures Reauthorization Act of 2015. This bill will save lives by allowing us to build on the knowledge we have gained about congenital heart defects and the best ways to treat them.

My bill directs the Centers for Disease Control and Prevention to study people of all ages with congenital heart disease. The CDC would make the results of its research available to congenital heart disease researchers and to Congress. We will enable some of the best scientific and medical minds in America to evaluate the best ways to diagnose and treat congenital heart disease.
Many adults living with congenital heart disease are not aware they need specialized care throughout their lives. And fewer than 10 percent of adults with complex congenital heart disease receive the care they need.

The Congenital Heart Futures Reauthorization Act directs the CDC to create a public awareness campaign to educate both patients and doctors about congenital heart disease and the need for lifelong specialized care for those living with congenital heart defects.

Finally, my bill directs the National Institutes of Health to conduct a review of ongoing research on congenital heart disease, identify areas of greatest need for research, and identify plans for future research.

We are not powerless when it comes to congenital heart challenges. We have made tremendous progress in my lifetime. Millions of Americans with congenital heart defects are living happy, healthy lives today because of that progress.

The Congenital Heart Futures Reauthorization Act bill will help us better understand what congenital heart disease looks like in the United States and what we can do to help those living with this disease live longer. This bill will save lives and ultimately it will save taxpayers money--a lifetime of specialized heart care is expensive.

I would like to thank Senator Casey for joining me in introducing this bill, and Representatives Bilirakis from Florida and Adam Schiff from California in the House for introducing the companion bill. I look forward to working with them on this issue that affects so many families.

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