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Please help support this new CHD Bill Just Introduced!

Please spread the word and prevent more families going through the worst possible situation ever, the death of their child. I don't want anyone to experience this pain.


Late yesterday the Congenital Heart Futures Act (Bill S. 621 in the Senate and HR 1570 in the House) was introduced to Congress! In the Senate, Senator *** Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support.


Durbin, Cochran, Space and Bilirakis Introduce Legislation to Expand Congenital Heart Disease Research

Tuesday, March 17, 2009

[WASHINGTON, D.C.] ? Assistant Senate Majority Leader *** Durbin (D-IL) today joined with Senator Thad Cochran (R-MS) and Representatives Zack Space (D-OH) and Gus Bilirakis (R-FL) to introduce bipartisan legislation that increases awareness, education and research into congenital heart disease ? a rapidly growing national health problem. The Congenital Heart Futures Act aims to prevent premature death and disability and increase the quality of life for the nearly 1.8 million people in the United States living with congenital heart disease.

?A child is born with a congenital heart defect every fifteen minutes,? said Durbin. ?Despite the prevalence of congenital heart disease, research, data collection, education and awareness are limited. This legislation will expand research and broaden its scope to help those currently living with congenital heart disease and perhaps, one day, find cures.?

?This legislation builds on recommendations by the National Heart Lung and Blood Institute to support and augment the research being done on congenital heart disease. The research will translate into better clinical treatments for Americans living with congenital heart disease,? said Cochran.

?For too long, we have allowed congenital heart defects to limit, alter, and end the lives of the Americans they afflict. Today, we take a significant step in the effort to end the horrible grip these conditions hold on far too many,? said Space.

?This legislation would help provide critical information to physicians and those living with congenital heart disease so they can make more informed decisions about their care,? said Bilirakis.

There are over 30 types of congenital heart defects, which occur when the structures of the heart are malformed, missing or in the wrong place during development. Heart defects are the most common and most deadly form of birth defects, affecting nearly 1% of births (approximately 36,000 a year). A child is born with a congenital heart defect every 15 minutes. These defects cause congenital heart disease?cardiovascular problems caused by the birth defect.

In 2004, the National Heart Lung and Blood Institute (NHLBI) convened a working group on congenital heart disease, which recommended developing a research network to conduct clinical research, establishing a national database of patients, and creating an outreach education program on the need for continued cardiac care. Today?s Congenital Heart Futures Act builds upon the NHLBI?s recommendations by:

Increasing public education and medical community awareness of congenital heart disease through a comprehensive public education and awareness campaign carried out by the Centers for Disease Control and Prevention (CDC);
Developing a National Congenital Heart Disease Registry at the CDC to track the epidemiology of congenital heart disease;
Creating an Advisory Committee on Congenital Heart Disease within CDC to provide expert information and recommendations regarding the development and operation of the Registry and other matters;
Promoting the coordination and expansion of the NHLBI?s congenital heart disease research, including a focus on causation; long term outcomes; diagnosis, treatment and prevention; longitudinal studies; and barriers to care.
While, there is currently no cure for congenital heart disease, modern medicine has made major advances in treating heart defects in newborns. In 1950, a child born with a congenital heart defect only had a 20% chance of surviving, but today that number has increased to 90%. Due to the increase in childhood survival rates, the population of people living with congenital heart disease increases by an estimated 5% every year.

Survivors of successful childhood intervention, however, face life-long risks including heart failure, rhythmic disorders, stroke, renal dysfunction, and neuro-cognitive dysfunction. The estimated life expectancy for those with congenital heart disease is significantly lower than for the general population ? age 55 for those with moderately complex heart defects and 35 to 40 for those with highly complex defects. Less than 10% of adults living with complex congenital heart disease currently receive recommended cardiac care, and many are unaware that they require life-long specialized health surveillance.


So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation. It just takes a minute - here's how you do it:

Go to https://www.senate.gov and https://www.house.gov to look up your representatives and their email address.

Draft your email - Here is a template to get you started.

Dear [Lawmaker name here]

I am writing as a member of the Adult Congenital Heart Association to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.

Congenital heart disease is this country?s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.

[Insert 2-3 sentences saying why you care ? some examples:

For a parent: My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.

From a health care provider: As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thank you in advance for your help in securing a future for all those living with congenital heart disease.


[full mailing address]

Make your letter personal to you. The template has a place to add two or three sentences (more is NOT better in this case!) about why this legislation matters to you personally, and offers some samples to help get you started.

Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.
That's all there is to it! After your done, take a moment to pass this news on to your friends, family and colleagues.

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