FALL 2011 UPDATE

In their FY2012 recommendations, the Senate Appropriations Committee Subcommittee on Labor, Health and Human Services, Education, and Related Agencies provided $2 million to go towards rigorous epidemiological and longitudinal data on individuals of all ages with Congenital Heart Disease.

The following language is included in the Senate report (which will be included in S. 1599):

Congenital Heart Disease.—Approximately 800,000 children and 1,000,000 adults in the United States are now living with congenital heart disease [CHD], which requires life-long cardiac care. The Committee is concerned that there is a lack of rigorous epidemiological and longitudinal data on individuals of all ages with CHD and has included funding to begin to compile this information. The Committee is particularly interested in information on prevalence, barriers to effective care, survival outcomes and neurocognitive outcomes.

This crucial funding's inclusion should be heralded and was, in no doubt, due to the bill's champions, including Senator Durbin of Ohio and Senator Thad Cochran of Mississippi.

What to do now:

1. Call or email Senators Durbin and Cochran and thank them for their support and leadership (click on the Senator's name to reach their email page).
2. Email members of the House Labor, HHS Subcommittee and ask for them to support this vital funding.
3. Remember: if you are a constituent of these members of Congress, let them know!  

Fall 2010 Update:

We are grateful that elements of the Congenital Heart Futures Act were included in the Affordable Care Act. But now comes the hard part. Funding for increased research and surveillance will need to be appropriated annually.

Urge your Senators and Representatives to contact the Chairpersons of the Health and Human Services Appropriations Subcommittee to ensure that they include funds in the Fiscal Year 2011 Labor, Health and Human Services Appropriations bill to fund the congenital heart disease surveillance system at the Centers for Disease Control and Prevention.

These funds would:

• Increased Research: The Congenital Heart Futures Act urges the National Heart, Lung and Blood Institute to conduct or support research on diagnosis, treatment, prevention and long-term outcomes in congenital heart disease which addresses the needs of infants, children, teens, adults and the elderly living with congenital heart disorders.

• Increased Surveillance: The Congenital Heart Futures Act asks the CDC to create the National Congenital Heart Surveillance System, which will provide nationally representative population based epidemiological and longitudinal data on infants, children, and adults with congenital heart disease in order to better understand CHD incidence, prevalence, and disease burden and assess the public health impact of CHD.

Take Action and Support the Congenital Heart Futures Act Today!

March 2010 Update:

Thanks to the passage of the health reform bill, the Patient Protection and Affordable Care Act (HR 3590), the Congenital Heart Futures Act is a reality.  

Contact your Senator or Representative today.  If they voted for the bill, thank them for the inclusion of a congenital heart national registry and related research.  

Also, contact Senator Durbin and his colleagues and thank them for advocating for the Congenital Heart Futures Act and bringing us one step closer to providing the research and support needed!   

SENATE COSPONSORS
Richard Durbin (IL)*
202-224-2152
Email Senator Durbin

Thad Cochran (MS)*
202-224-5054
Email Senator Cochran

HOUSE COSPONSORS
Zachary Space (OH) *
202-225-6265
Email Representative Space

Gus Bilirakis (FL) *
202-225-5755
Email Representative Bilirakis

What is the Congenital Heart Futures Act?
The Congenital Heart Futures Act will increase funding for public education, a national registry, and research. Thanks to medical advances, the percentage of people living with congenital heart disease and disorders increases by 5 percent every year. The CHF Act will address life-long needs while improving diagnosis, treatment, and prevention.

The Congenital Heart Futures Act was introduced by in the Senate (S.621) by Senators Durbin and Cochran on March 17, 2009 and was referred to the Senate Health, Education, Labor, and Pensions (HELP) Committee. An identical bill with the same name was introduced in the House (H.R. 1570) on the same day by Congressmen Zachary Space of Ohio and Gus Bilirakus of Florida. It was referred to the House Energy and Commerce Committee.

January 2010 UPDATE:
Certain provisions of the act are included in the Senate's health reform bill, the "Patient Protection and Affordable Care Act." We urge you to contact your Senators and U.S. Representative and ask them to ensure that the congenital heart disease research and registry provisions are retained in any final health care reform legislation.

Take Action Today and Show your Support!
Below are four easy ways you can tell members of Congress that we support this act because we love the people it will support.

To contact your respresentatives, follow the links to email them. You will be brought to a C-SPAN website, which will allow for you to submit comments to them. For sample messages, see the bottom of this page. Thank you for taking the time to show your support.

Have 5 Minutes?
Ask your Senators and Representatives to support the Congenital Heart Futures Act. Click here and type in your zip code. If they are listed on the right as cosponsor - thank them. If they are not, ask them to cosponsor the Congenital Heart Futures Act.

Have 10 Minutes?
Ask the leadership of both the House and Senate Committees to move forward with the Congenital Heart Futures Act.

HOUSE ENERGY and COMMERCE COMMITTEE
Henry A. Waxman, CA, Chair
(202) 225-2927
Email Congressman Waxman

John D. Dingell, MI, Chair Emeritus
Email Congressman Dingell

Joe Barton, TX, Ranking Member
Email Congressman Barton

HEALTH, EDUCATION, LABOR, and PENSION COMMITTEE (HELP)
Sen. Tom Harkin, Chair
(202) 224-3254
Email Senator Harkin

Sen. Michael Enzi, Ranking Member
Email Senator Enzi

Have 15 Minutes?
Are you a constituent to a committee member? Click to see if a Senator or Congressmember from your state sits on one of these committees. Ask them to support the continued progress of the Congenital Heart Futures Act.

Have 30 Minutes?
Thank those who have stepped up to introduce and support this vital piece of legislation. To let them know that their support is appreciated, click on the link below their name. It will lead you to a letter submission page.

SENATE COSPONSORS
Richard Durbin (IL)*
202-224-2152
Email Senator Durbin

Thad Cochran (MS)*
202-224-5054
Email Senator Cochran

HOUSE COSPONSORS
Zachary Space (OH) *
202-225-6265
Email Representative Space

Sheila Jackson-Lee (TX)
202-225-3816
Email Representative Jackson-Lee

Gus Bilirakis (FL) *
202-225-5755
Email Representative Bilirakis

Bruce Braley (IA)
202-225-2911
Email Representative Braley

Charles Wilson (OH)
202-225-5705
Email Representative Wilson

Gerald Connolly (VA)
202-225-1492
Email Representative Connolly

Tammy Baldwin (WI)
202-225-2906
Email Representative Baldwin

Joe Sestak (PA)
202-225-2011
Email Representative Sestak

Carolyn Kilpatrick (MI)
202-225-2261
Email Representative Kilpatrick

Brad Sherman (CA)
202-225-5911
Email Representative Sherman

Betty Sutton (OH)
202-225-3401
Email Representative Sutton

Frederick Boucher (VA)
202-225-3861
Email Representative Boucher

John Lewis (GA)
202-225-3801
Email Representative Lewis

Todd Platts (PA)
202-225-5836
Email Representative Platts

* Introduced the bill

If you have any questions or problems, please leave a comment.

Cut and Paste

Feel free to cut and paste the messages below or to personalize your own. When using the C-SPAN contact page, you will be asked to fill in information. Don't forget, if you are a constituent, make sure to include say that in your message.

SUBJECT: Congenital Heart Futures Act

ISSUE: Health

Sample email asking, "Please consider cosponsoring."

Please consider cosponsoring The Congenital Heart Futures Act. This vital legislation will increase funding for public education, a national registry, and research. Thanks to medical advances, the percentage of people living with congenital heart disease and disorders increases by 5 percent every year. The Congenital Heart Futures Act will address life-long needs while improving diagnosis, treatment, and prevention. I appreciate your support and hope that the passage of this bill will bring about a brighter future for some 1.8 million Americans.

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer at Rep. Space’s office at (202) 225-6265 and Senators should contact Sara Singleton at Senator Durbin’s office at (202) 224-2152.

Sample email asking, "Please help move this forward."

The Congenital Heart Futures Act was referred to your committee. This vital legislation will increase funding for public education, a national registry, and research. Thanks to medical advances, the percentage of people living with congenital heart disease and disorders increases by 5 percent every year. The Congenital Heart Futures Act will address life-long needs while improving diagnosis, treatment, and prevention. I appreciate your support and hope that the passage of this bill will bring about a brighter future for some 1.8 million Americans.

Sample email saying, "Thank you for cosponsoring."

Thank you for cosponsoring The Congenital Heart Futures Act. This vital legislation will increase funding for public education, a national registry, and research. Thanks to medical advances, the percentage of people living with congenital heart disease and disorders increases by 5 percent every year. The Congenital Heart Futures Act will address life-long needs while improving diagnosis, treatment, and prevention. I appreciate your support and hope that the passage of this bill will bring about a brighter future for some 1.8 million Americans.

The Congenital Heart Futures Act
VIEW THE BILLS
To view the Senate bill, click here.
To view the House bill, click here.

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